[This Transcript is Unedited]
J.D. Morgan Athletics Center
325 Westwood Plaza
Los Angeles, California
Agenda Item: Welcome and Introduction.
MS. MAYS: Good morning, everyone. Welcome to the second day of our hearings. I think I will do just a quick intro again, in terms of like what our process will be.
On behalf of UCLA, I welcome you here, and on behalf of the Subcommittee on Populations for the National Committee on Vital and Health Statistics, it is my honor to welcome you to the meeting and to thank all of you who are here, for being here.
I realize it is a holiday weekend. So, I bet you had some choices. That is what they say on the airlines. We are happy you came to be with us.
Anyway, as all of you know, the hearing today is dedicated to look at issues of the collection of data on race and ethnicity in Asian, Native Hawaiian, and other Pacific Islander populations.
In terms of why we are doing this, the goal has been, as part of the Subcommittee on Populations, the goal has been to really try to determine whether or not we are collecting the data that we need to determine if there are health disparities, to look at some of the methodological issues, to try and understand, for example, issues of misclassification, the role that language plays, geography, particular issues with small populations, to ensure that we have information on health status, health behaviors, and access to care, in order to ensure that the health of this population is the best that it can be, to use some of the government lingo here.
So, we have had a series of hearings. This is one of those, in which what we try and do is be in places where the population that we are interested in talking to is more likely to be able to attend the hearing and talk with us. That is part of the reason we are in Los Angeles.
On Saturday, Dr. Kagawa-Singer, who will be here a bit later, has a conference that she is sponsoring on the health of Asian and Pacific Islanders. Part of what we tried to do was to tag onto that meeting.
The process that we will follow throughout the hearing is that typically we will have advisors and experts who will be talking with us.
The committee will then ask a set of questions and then we open it up to he audience. We welcome participation by everyone. So, please do not hesitate at all to come to the mike if you have a question or comment.
What we also usually do when we start our hearings is, in addition to the committee introducing themselves, we will ask those of you who are here with us also to introduce yourselves. So, I will start.
I am Vickie Mays. I am the chair of the Subcommittee on Populations, and I am also a professor here at UCLA.
MR. HITCHCOCK: Good morning. My name is Dale Hitchcock. I am with the U.S. Department of Health and Human Services, and I am a staff person for the subcommittee.
MR. LENGERICH: Gene Lengerich. I am a member of the subcommittee, and I am from Penn State University.
MS. JACKSON: Debbie Jackson, the National Center on Health Statistics, and staff to the national committee.
MS. BREEN: Good morning. I am Nancy Breen. I am an economist at the National Cancer Institute. I work in the division of cancer control on population science. I have a special interest in cancer screening and healthy populations, and have always been upset that we don't have data on Asians and Pacific Islanders to analyze, outside of that other category, until CHIS.
MS. LI: My name is Susan Li(?). I am a program specialist at the Orange County Asian and Pacific Islander Community Alliance in Garden Grove.
MS. TRAN: Good morning. I am Jacqueline Tran(?). I am a program manager at the Orange County Asian Pacific Islander Community Alliance in Garden Grove.
MR. DO: Good morning, Julian Do, co-director of New California Media in Los Angeles. We actually assisted UCLA with the CHIS survey, a couple of years ago.
MS. TOSTA: Hi, I am Elan Tosta(?). I am with the South Asian Public Health Association.
MS. WHITE: I am Gracie White with NCVHS Subcommittee on Populations.
MR. CHHAY: Chanda Chhay. I am the transcriptionist for this committee.
GREG: My name is Greg, and I work for AVS.
MS. WILHEIT: Cheryl Wilheit(?), Magna Systems, contractor to NCVHS.
MR. CHANOSA: My name is Danny Chanosa(?). I am with the Asian Pacific American Legal Center. I direct our demographic research unit.
MR. MAYS: Good morning, and welcome. We were introducing ourselves. So, you just walked in at a perfect time.
Dr. Kagawa Singer is on her way. She actually has computer problems. So, we are going to actually get started, and then she will join us.
I am very happy to have you here today. One of the things that I had heard quite a bit about was what is being called the brown paper. I think that is a great idea that, instead of all these white papers, that we start talking about brown papers.
I had heard quite a bit about the brown paper. I think part of what we ought to know about this is that it was all done with volunteer labor. So, this is actually a labor of love.
For those of you -- she only had a few. What I told her we would do is, also make sure that, when things go up on the web site, we will put some information on the web site about it, because we can't put the whole report of.
It is called The Health of South Asians in the United States. Again, the theme for today really has been for us to look at those populations where we really do have information.
So, I really do want to say welcome to you and to say thank you to your group for all the efforts that they engaged in, to put the brown paper together. Thank you. Welcome.
Agenda Item: Status report on Brown Paper of the South Asian Public Health Association.
MS. GUPTA: Thank you so much. I want to say, on behalf of the South Asian Public Health Association and all our hard working volunteers, that we really appreciate the opportunity to share the information about this exciting report and our work.
So, just to give you an overview of the presentation, I just want to give you a little bit of background about SAPHA, and overview about the brown paper.
I will then talk a little bit more about the South Asian community, define who South Asians are and also present some of the data that is in this report about South Asians, classification issues, I will talk a little bit about the immigration history, overall numbers -- a lot of the data is from the census -- the geographic distribution and some other key demographic facts.
Then, to close out, I will talk about some of the recommendations that we were able to glean from putting together the brown paper.
SAPHA was actually established in spring of 1999. It began with about 10 committed individuals, actually on the east coast, a combination of students and professionals around the Baltimore area.
Since then, the list serv has really grown. That is what it primarily was. Thanks to e mail communication and this technology, we have been able to, just by word of mouth, at American Public Health Association meetings and other such venues, really spread the word about the existence of this list serv. Today, we have nearly 400 participants on the list serv.
SAPHA is actually in the process of becoming incorporated, as we have taken on this brown paper project, and are really trying to establish where we want to go in the future.
The mission of SAPHA is to promote the health and well being of South Asian communities, and the advancement of public health professionals.
We have a couple of goals, to provide a forum for mentorship, dialogue and resource sharing among public health professionals working with South Asian communities, advance the leadership, networking and professional development of South Asian public health professionals, to raise the awareness of health risks and encourage healthy behaviors among South Asians, increase the awareness of the value of culturally appropriate services for South Asians in the United States, and encourage and support research and academic communities interested in South Asian health issues.
I think one of the reasons that we were able to be so successful with the brown paper is because the list serv has such a variety of people, from researchers and academics to professionals, people who work in government settings, community advocates. So, it is really quite a range of people.
So, this is a little picture of our brown paper report, which we are really proud of and really excited about. It was published in the fall.
The purpose of it was to review the research and literature on South Asian health in the United States. Continually, we are running into the problem that there are no data about our communities.
So, we decided that it would be a useful exercise to try and actually put together a compendium which really summarized the state of South Asian health.
There is some data. There is some literature to be able to summarize that, in order to show where we are doing well, identify gaps in services and health disparities.
The project was initiated in July of 2000 and, as I mentioned, the paper was published in October of last year.
The methodology that we used in putting it together, through the list serv, we asked if people were interested in writing a chapter on a topic in which they had expertise.
As a result, we were able to include 13 different chapters in the paper on various health topics. In addition, as we were compiling all this great information, we also decided to put together a resource directory, so that people could have more information about various organizations that serve the South Asian community throughout the country, and that is the last section here in the brown paper.
We are hoping also to put that on line as a format that would be very easy to update and that would also be easy for people to access.
The methodology that I mentioned was the list serv participants came forward to review the current literature. Also, in addition, sometimes when literature and data wasn't available, key informant interviews were sometimes conducted with community-based organizations and other key leaders.
For example, on topics like substance abuse and mental health, there is a scarcity of data about Asian Americans in general, including South Asians.
So, that is how the information was gathered, and the 13 topics that are included in the brown paper are a sociodemographic profile, just to sort of give a context for the rest of the chapters, youth health, women's health, lesbian, gay, bisexual and transgender health, elderly health, cancer, cardiovascular disease, diabetes, HIV/AIDS, intimate partner violence, mental health, nutrition and substance abuse.
It doesn't mean that these are the only health issues in our community. There are some other ones that we would have loved to have chapters on but, again, this was a volunteer effort and people sort of came forward to do this. So, it was really exciting to have this all come together.
Just to tell you a little bit about who South Asians are, they are a diverse set of communities and cultures with family origins in seven countries.
The countries of origin include Bangladesh, Bhutan, India, the Maldives, Nepal, Pakistan and Sri Lanka. Broader definitions of the South Asia region sometimes include Afghanistan, Tibet, as well as Myanmar, which was formerly Burma.
It is also important to note that not everybody who is here in the United States came directly from these countries.
The influences of colonialism, as well as people pursuing economic opportunities meant that the diaspora includes communities that lived in other countries, perhaps, for one or several generations.
There are large South Asian communities in Trinidad and other parts of the Caribbean, as well as in Guyana and other parts of South America, in certain parts of Africa such as Kenya and Uganda.
There are also very large South Asian communities that have lived there for several generations, as well as Fiji and other parts of the Pacific Islands, as well as Canada and the United Kingdom.
To give you a little bit of information about South Asians here in the United States, South Asians actually have a very rich history here in the United States.
People think of this community as an emerging community. Even though the bulk of migration has happened in the last approximately 40 years, South Asians have been in the United States since the 1790s.
The first report of a South Asian man was in the 1790s, an unidentified man from Madras. From that time period to the early 1900s, South Asians came to the United States in small numbers, primarily Punjabis, Sikhs and Muslims. Punjab is a state in the northern part of India.
They primarily came and settled in the western and south western United States and worked in the agriculture and lumber industries.
Then, there was some legislation that took place that prevented Asian Americans from certain countries from coming here to the United States, which closed off further South Asian immigration.
The immigration act of 1917 established a barred zone of countries, including the South Asian region. Then secondly, the immigration law of 1924 prohibited recent immigrants from bringing family members, such as wives and children, over.
Then, it wasn't until 1946 the Loos-Seller(?) bill was enacted, which created citizenship for Indians and Filipinos, that the ban on South Asian immigration was lifted and allowed an annual quote of 100 immigrants.
Really, the second wave of immigration of South Asians was in 1965 through the immigration and naturalization act.
This is really what people think about when they think about South Asian Americans. It enabled large numbers of professionals, such as doctors, engineers and lawyers, to come into the United States, and it is also known as sort of a brain drain on the countries of origin.
Then, things started to shift a little bit in the 1980s to the present. A third wave of immigration started, and there are really two parts to that third wave.
The first is also what has received a lot of publicity. The growth of the high tech sector here in the United States brought in a large number of professionals, primarily on work visas, as contract laborers, engineers who worked in the computer industry in Silicon Valley or in other parts of the country.
Again, that has been seen a lot in the press. What I think is not as well known is the second part. The family reunification provisions of the 1965 immigration and naturalization act allowed people to bring over members of their family that were lower skill level, blue collar workers.
So, you see in certain areas of the country, such as New York, there are large populations of taxi drivers, people who work in convenience stores. So, this was a markedly different population compared to the previous wave, and also the other high tech sector workers.
MS. MAYS: Can I ask a question? Can you go back to this slide? What would be useful also is if you could tell me just a couple of things in terms of these three groups.
In terms of group two and three, where did they settle in the United States? Part of what we are also trying to learn is where clusters might be, and whether that would then facilitate our ability to do geographic kind of sampling.
The other is particularly, I guess, for three, if there are language issues at all, and then maybe you can tell us what those languages are.
MS. GUPTA: I will actually be getting into that information a little bit later, when I get into some of the data. So, if there are specific questions you have then that I don't cover, please feel free and let me know.
MS. BREEN: One more thing before you leave that slide. Were there particular reasons that people left their country of origin to come, that might have an effect on health or welfare that would help us understand this, too?
MS. GUPTA: Sure. In general, people tend to come for sort of the same reasons, for economic prosperity, also there might have been political instability in the countries that they were coming from. So, those would be important considerations as well.
MS. BREEN: But you don't have anything more specific than those general reasons, but those would be the reasons?
MS. GUPTA: Yes. I think especially the second part of the third wave, there were people coming especially related to political instability in their countries of origin.
I will just talk a little bit about identification of South Asians. The classification of South Asians is extremely complicated due to the diversity of this community.
I mean, it is a pretty significant geographic region. This subcontinent of South Asia probably parallels in diversity to that of Europe.
A very large number of languages. The country of India has 26 official languages, but unofficial languages are much higher, you know, in the hundreds.
Here in the United States, the most common languages are Bengali, Hindi, Punjabi, Gujarati and Urdu. Also, these are the languages in which there tends to also be the highest rates of limited English proficiency.
So, the community-based organizations that have been doing health advocacy and health education work have tended to try and translate materials into these languages.
Incredible diversity in terms of religion as well. The major religions are Hinduism, Islam, Christianity, Sikhism, Zoroastrian and Jainism.
For example, even though India is a country that is 80 percent Hindu, it has a very significant Muslin population. There are more Muslims in India, actually, than in the country of Pakistan or the country of Bangladesh, because the population is so large in India.
Then, in terms of culture, too, there is incredible variation in culture, depending on the region you are from.
So, people may identify according to the region they are from. They may identify as Punjabi, they may identify according to language or according to religion. So, this makes classification and self identification very complicated.
I think the term South Asian is something that has sort of come out of community activism, and seeing the commonalities of these groups and trying to collect data not only for the individual subgroups, but looking at South Asians as a whole, I don't think all community members would necessarily identify as South Asian.
They may identify more strongly as Muslim rather than Indian. There is a lot of complexity when you ask people to self identify.
I think also people may not be that educated. For example, with Indians, they may interpret if you are Indian, that might be American Indian.
I actually know somebody that works for the Children's Defense Fund in New York and they were doing a health survey, and they were finding a large number of American Indian responses, which they found very unusual. It turned out it was a lot of Asian Indian respondents. The people who are administering the survey just weren't knowledgeable about that group.
The other thing I would like to say about South Asian data, because Asian Indians are the largest subgroup, often data about Asian Indians is applied to South Asians as a whole.
You know, I am sure, as you have heard in testimony yesterday, and this is true for Asian Americans in general, this may mask important differences among the South Asian subgroups.
These are actually the objectives, I think, of the brown paper, which I am not going to go into right now. I am going to actually present now a couple of tables that have data that you were asking about, about the geographic distribution of South Asians.
They are taken from the 2000 census. I will just give you a brief summary of some of the data that is going to be presented in those tables.
There are almost two million South Asians in the United States. South Asians are actually the fastest growing API group, with a growth rate of 106 percent.
They also are the third largest API group, with Asian Indians comprising 16.4 percent of all Asian Pacific Islanders.
Eighty-six percent of South Asians reside in 15 states which, again, I will show you in an upcoming table, and 80 percent of South Asians reside in 30 metropolitan areas, with the largest concentrations in urban areas in the northeast, in California and in Chicago.
The 2000 census also shows that there are growing numbers in other parts of the country, such as the southern and midwestern United States.
So, this table line shows the detailed South Asian subgroups for which there is data available from the 1990 and 2000 census.
The 2000 census, this is the race alone data, because it is most comparable to the 1990 census data.
As you can see, Asian Indians had a pretty significant growth rate, and the same growth rate as South Asians as a whole have 106 percent, with almost 1.7 million in 2000.
For Bangladeshis, you can see they had a very, very marked growth rate of 249 percent. That would be a difference that would be masked if we didn't have the disaggregated data.
For Pakistanis, also, significant growth rate, a little bit lower, of 89 percent. For people from Sri Lanka, about 20,000 total throughout the United States, and about an 84 percent growth rate. Again, almost two million South Asians.
This next table shows the 15 states with the largest number of South Asians. California is the state with the largest, followed then by New York and New Jersey. Texas is next followed by Illinois, Florida, Pennsylvania, Michigan, Virginia, Maryland, Georgia, Massachusetts, Ohio, North Carolina and Washington.
You can see there are also some variations among where the subgroups live. For example, almost two thirds of the Bangladeshi population lives in the New York state. So, you know that a lot of the growth that occurred is most likely in that area.
As well as, then, for Pakistanis, a large majority of the community lives in California, New York, New Jersey, Texas and Illinois.
So, this gives you a little bit of sense of the distribution of South Asians throughout these 15 states and, again, 86 percent of all South Asians live in these 15 states.
Also, then, to give you a sense of how South Asians are distributed in metropolitan areas, the highest concentration is in the New York, northern New Jersey, Long Island, New Jersey, Connecticut, Pennsylvania area, with a little less than 500,000 South Asians living in that area.
That is followed, then, by the San Francisco are has about 150,000, Los Angeles also figures to have a large number, and about 120,000 total, and then Chicago, as well, has a significant population.
You can also see there are significant populations in other areas. I apologize, this is sort of a large table, so it is broken up into two slides.
Atlanta also has a pretty large population, Florida, the Miami Ft. Lauderdale area. Seattle also has a pretty large population, parts of the midwest like Minneapolis.
I won't read them all, but it gives you, again, a sense of the geographic distribution of South Asians, both according to state and according to place.
I am also going to then present a couple of figures that have additional key demographic information. Unfortunately, some of this data is from the 1990 census, and it is only for Asian Indians. Again, it is being applied to South Asians as a whole, and may mask some important differences.
The median age of Asian Indians, according to the 1990 census, is 29.4 years. There is a slightly higher male proportion, 54 percent men and 46 percent women.
The majority are foreign born, according to the 1990 census, but with a large growth rate, it could be a larger proportion of foreign born in 2000.
Even though it is an emerging, recently, group, it is important to keep in mind that there is a sizeable second generation population.
Asian Indians are also known for having the highest median family income, of $49,309, but as often happens for communities, it doesn't show what the distribution is of income.
Even though there is a group that is doing very well, it may sort of again mask a significant proportion that isn't doing very well.
Twenty-five percent of Asian Indians live in households with incomes less than $25,000. There is also, I think, a sense that Asian Indians are all English speaking, but a significant proportion is limited English proficient, at 25 percent.
Also, another important statistic is that 21 percent of South Asians lack health insurance. So, this table shows you the age distribution and, as you can see, it is a relatively younger population.
As well, this also shows you the family income distribution. You know, some of the lower income families may not have been captured in the census. I am sure there is a lot of debate and discussion about who gets captured in the census.
Definitely, there is a segment of Asian Indians who are doing very well, because of the 1965 act, which brought in a lot of professionals.
Also, this is the household income distribution of Asian Indians. As I mentioned, 25 percent are in households of $25,000 or less.
The brown paper actually has recommendations at the end of each of the chapters that are specific to the health topic that is presented.
We found, as we put all the chapters together in this one report, that there were four sort of cross cutting recommendations that kept appearing.
The first is really the need for reliable data. As I mentioned, some of this data was collected through innovative means, through key informant interviews.
It is needed for South Asians as a whole, as well as it is needed in a disaggregated manner, to understand what differences exist between the subgroups, so that programming and services may be rendered.
More funded research on the health status, needs and concerns of South Asians are needed. Even though this is an extensive report, it was difficult to find data, especially in certain areas.
Then, a focus on culturally appropriate outreach and education, working with existing community-based organizations, which again, I am sure, is something that is common for other Asian American and Pacific Islander communities.
Then, also, this does apply to other Asian Pacific Islander communities but, given changing immigration profiles, not all South Asians are well to do, healthy, wealthy and wise.
People also are coming from countries that do not have concepts of prevention. So, even though the income levels may be high, people may not be accessing important preventive care, such as pap smears, such as routine screenings.
Really, all of this information needs to be considered, and South Asians as a model minority, you know, we have to see where they are doing well, but we also have to look and see where they are not doing well, and see what are the groups in needs. So, thank you so much for this opportunity.
MS. MAYS: Thank you. That was exactly the kind of presentation that the committee has been wanting, because it helps us to get the information about a lot of the different issues that we will be struggling with. I am going to start with questions here.
MS. BREEN: I have two questions, please. Thank you very much for a nice presentation. It was very helpful. Just a couple of things.
You showed us, one of your slides had some data about low income and lack of English proficiency, and those were about 25 percent. I wondered if you had cross tabbed that to see if there was overlap between those groups.
MS. GUPTA: No, we haven't.
MS. BREEN: That might be helpful. That would certainly be useful for the committee to use. Even though this is a population that a lot of it is quite well off and may not be in need of a whole lot of intervention or attention, there is the possibility for rather intense problems of health disparities, I think as you pointed out so nicely in your talk.
Then, could you comment on the point you just made, where people may be coming from countries where prevention isn't a priority, or there isn't a lot of emphasis on prevention?
Are you in a position to talk about campaigns that are or aren't going on, or sort of give us a sense? Prevention is talked about very much in this culture, and just to give us a sense of some of those large countries that you mentioned, maybe India, Bangladesh, you don't have to go through every one, but some sense of that?
MS. GUPTA: Unfortunately, I can't say as much -- do you mean in India, specifically, what kind of prevention or health promotion campaigns are going on?
MS. BREEN: It may depend, by state, there is a possibility for a lot of variation in such a large country as India.
MS. GUPTA: Sure. I think some of it is done nationally and some of it is done on a state and local level.
I mean, like most countries, so many people in India and some of the other South Asian countries live in rural areas, and literacy rates are low in the country in general.
A lot of the education that is done is sort of tailored to the communities, is done more through outreach workers using people who are familiar with those communities.
Unfortunately, I am not an expert on what is going on, sort of, back there. So, unfortunately, I can't speak a lot about that.
MS. BREEN: And you wouldn't happen to know about the medical training, or in the course of medical training, is there an emphasis on prevention?
MS. GUPTA: Not as far as I know, but again, I am not that knowledgeable about that.
MR. LENGERICH: Just two questions to follow up a little bit on that, could you say anything about the communities' perspectives on prevention and their eagerness to adopt that, and not so much the medical system or the system in South Asia, but more about the communities, the individuals here, perspective?
MS. GUPTA: There are a lot of South Asians who work in the health sector. There are a lot of South Asian physicians. As you can see also from this report, there are a lot of South Asians who work in public health.
So, I think there is growing awareness, and I think the community-based organizations have increasingly been trying to develop health education materials, trying to develop culturally appropriate messages about prevention. Using also a lot of peer education as well, I think, is really important.
MR. LENGERICH: A second question is, could you talk a little bit about your organization here, and I guess particularly I am interested in its relationship to things like APHA, the American Public Health Association or the Society for Public Health Education, I think it is. How does your group interact with those, and could you make any recommendations in that area?
MS. GUPTA: Well, we try to have our annual meetings in conjunction with APHA, because the people who are part of our list serv and part of our organization are also members of APHA and will tend to go to that meeting.
We sort of, South Asians, since we are a subgroup of Asian Americans and Pacific Islanders, we try to feed in our information to the Asian Pacific Islander caucus. So, we did a very broad dissemination of the information, a lot of press releases went out. I know the APHA, Nations Health, carried an announcement about our brown paper.
I am not sure as much about the education society, though. I don't think we have made many connections with that, but we have really tried to use the networks that we have to get the information out and try to link with existing organizations.
MR. LENGERICH: Thank you. This is a nice report, very good.
MS. GUPTA: Thank you so much.
MS. MAYS: Let me ask a couple of other questions, some of which, as we think about recommendations, I think understanding a little bit about the questions I am going to raise would be helpful.
Do you have a sense of, if people call the homes of different groups that you have talked about, there is a willingness to participate in research, particularly if it is research that is being conducted by the government?
Do you have a sense of whether or not there are the resources out there, for example, to do the translations, if suddenly I was about to convince them to do all this? Help me understand whether or not I could find people and get interviewers and all of that.
MS. GUPTA: I know a lot of people participated in the census effort. I know SAPHA actually, I think within the Baltimore/DC area, sent out volunteers.
Our resource directory lists a lot of community-based organizations throughout the country, you know, that have developed health materials. So, there is definitely a capacity for doing translations.
I know also with a lot of the post-9-11 hate crimes backlash, the South Asian community was very affected. Some of the public interest legal networks also produced a lot of materials about knowing your rights and what to do in this new environment in different South Asian languages. That capacity definitely exists in terms of translation.
I know here also in Los Angeles the AMCART network is working with the South Asian community. So, we also are hoping on our web site to put up more information about existing research efforts, so that gets widely disseminated.
MS. MAYS: What I would like to do is turn to the audience, and if there is anyone who either wants to ask a question or make comments, please come to the mike and feel free to do that. If you will introduce yourself?
MR. DO: My name is Julian Do, with New California Media. Could you comment on some of these commons, health cares, issues in the South Asian communities?
For example, in the Asian communities, diabetes is one of the main health concerns. What are some of the characteristics in the South Asian communities?
MS. GUPTA: Sure. Actually, in the executive summary of the report, because it is a pretty extensive report, we talk about some of the data highlights.
One of the things that is mentioned in terms of the leading chronic health concerns, are high blood pressure, diabetes and obesity.
The primary cause of mortality in Asian Indians is cardiovascular disease. There is definitely a higher prevalence of this compared to other Asian groups, as well as non-Hispanic whites.
With relation to youth health, Asian American children are two to three times more likely to lack a usual source of health care, and continuity of care, as compared to white children. There is a lot of this information and data within the report.
MS. MAYS: I think we have one copy in the back. Maybe what might be useful is, let's pass it around and let people look at it as we move along.
Gracie, do we have one in the back, an extra report? Why don't you pass it around. Do you have any other questions, comments?
I want to thank you very much. This has been very useful for the committee and we really appreciate your sharing these with us.
Again, I think they have -- you will be going into publication again?
MS. GUPTA: Yes, we are doing a reprint. We had a very enthusiastic response, so we are just in the process of doing that.
MS. MAYS: Okay, thank you. Let me take about a one-minute break, because I want to consult with Dr. Kagawa Singer, and then we will start again.
[Brief recess.]
MS. MAYS: Okay, folks, I think we are going to get started again.
MS. THEA: Hi, My name is Jo Thea(?). I am actually from the South Asian Network. I am a program assistant for the anti-violence project.
MR. KURAMOTO: I am Jack Kuramoto. I am with Magna Systems, and I am the NCVHS web master.
MS. PARIK: Hi, I am Puna Parik(?). I am from the South Asian Network. I am an intern and I just finished my MPH.
Agenda Item: Report of South Asian Network.
MS. UPADHYAH: Good morning, everybody. My name is Perdita Upadhyah, and I am the director of programs with the South Asian Network.
The South Asian Network is a non-profit organization which is based in Cerritos Artesia, and we are working with the South Asian community in Southern California.
As I proceed with my presentation, I will just kind of run everybody through the different programs that we have.
We do a lot of work in working with the uninsured South Asian community and the undocumented South Asian population, helping them access health care services.
We do a lot of work around domestic violence within the South Asian community. We are working on anti-discrimination and hate crime issues, especially after September 11.
It is the only non-profit organization right now in Southern California that is working with the South Asian community.
So, basically we are addressing the needs of the community, which is very fluid. It is, at times, very challenging, because there are no other organizations right now, and we try to work with the community and try to solve, I would say, as many problems as we can.
It is a very fast, emerging population and I am sure when Lelam had her presentation, she must have kind of given the census data that we saw.
It is right now the third largest growing population in America. I would just kind of talk about -- I will be focusing my presentation on experiences that we have had in working with this community, especially in accessing health care services, and when we are designing programs for funding, the problems that we run through because of the lack of data, to substantiate the problems that we see.
We face a huge problem when we try to substantiate the issues we want to kind of express in the proposals and grants, because we don't have enough data to support the problems that we actually see that are happening in the community.
I think I just want to introduce the South Asian countries, and what are the countries that we are looking at when we say South Asia.
We look at seven countries, and they consist of Bangladesh, Bhutan, India, Maldives, Nepal, Pakistan and Sri Lanka.
So, these are the seven countries that make up South Asia. At the South Asian network, the board has eight on the board of directors. They come from all these different countries.
They are all first generation immigrants. The staff has people from all these countries except Sri Lanka. The community organizers that we have, who we use to do outreach and who help us to organize the community, come from all seven countries.
So, that is basically how the South Asian Network has expressed its diversity as far as the seven South Asian countries are concerned.
MS. BREEN: Excuse me, when you say countries of origin, are they all immigrants?
MS. UPADHYAH: Yes, they are all immigrants. So, even on the board level, the board members are all first generation immigrants from all these different countries. The staff as well, we are all immigrants, and we are working with the South Asian immigrant community.
Amongst the many health programs that we have for the South Asian population, we do a lot of work around trying to help the uninsured and the undocumented community get access to health care services.
We try to get them enrolled into the MediCal program, the healthy families program. We do a lot of work around education and prevention of breast cancer for the South Asian women.
Again, for the uninsured women who are not able to have mammograms and cannot do it because either they have problems in accessing services, or just basically because they are not insured.
We do some amount of work around HIV/AIDS for South Asian youth, and Judy is organizing that program. We have presentations and workshops at different schools and different South Asian associations for the South Asian community.
We do a lot of work also around domestic violence, which we do look upon as a health issue, and we try to get children that do not have insurance and come from low income homes enrolled into the healthy family program.
Some of the problems we have seen in our scope of work, and working with the community is barriers to accessing health care services.
We find ourselves sometimes in a situation where we say, how can we help the community that has so many issues in accessing health care services.
The prominent points that I think we kind of keep discussing all the time would be language barriers, because there is this myth that the South Asian communities is made up of doctors, lawyers, engineers and computer technicians and computer masters, which I think is a very wrong myth.
The group that we are working with, we don't see them coming from any of these classifications. They are all new immigrants. A very large population doesn't speak English. They just speak only their native language.
So, we see that language is a huge barrier for these groups to be accessing health care services. The other problem that we have seen is that not many hospitals and not many clinics seem to be having services of language interpretation.
So, we get calls from a lot of hospitals and clinics asking us to be interpreters for the clients. You know, many times when we tell the clients to kind of seek services, their response is, but we don't speak English and we don't find people in hospitals and clinics that could help us.
The other problem we have seen is transportation.
MS. MAYS: Can I ask you a language question before you move on? You showed us all the different -- I think it was like 10 different areas -- Nepal, Pakistan -- now when you have to translate, I don't know how similar or different the languages are for all those groups. Can you try to give us an idea of, can a person who is from Pakistan, then, translate for somebody who is from Nepal or Bangladesh? How difficult is this? Tell us about translation needs.
MS. UPADHYAH: If you look at all of South Asia, it is only in India, we are looking at almost, I think, about 100 to 150 dialects, just in India.
So, in the office, the way we have done it is, we have selected seven major South Asian languages. So, when we say seven major South Asian languages, we are looking at each language from the seven countries.
If we do get calls inside the office for assistance, for interpretation, in any one of those seven languages, we have staff that speak all the languages.
If we happen to get services for any of the languages that are not available in house, we try to get volunteers or board members who speak that language.
So, we look at seven major languages and, amongst the South Asian community, Hindi cuts across the borders. Everybody understands Hindi.
So, that is a common language, Hindi and Urdu. Urdu is spoken more by people from Pakistan, and Hindi, of course, is the dialect in India. So, Hindi cuts across all South Asian countries, and that is a very common language which people can understand.
The other major problem that we have seen is transportation, because not all women drive. They are very intimidated in taking the bus services. They are new immigrants who don't know their way out in the city, especially in a city like Los Angeles, which is so huge. They are just scared to take any kind of public transport, go for medical check ups.
The husbands are working two to three jobs a day. They can't afford to take time off to take their wives to the hospital. So, transportation, again, is a major problem.
Lack of regular health care providers, fear of results. This is a very interesting thing that we have seen. People are generally scared to go in for a medical check up.
It might, again, go back, when we look at the cultural nuances in South Asia. Normally, you really don't go for physical check ups unless you are really sick. So, there is a lack of preventive orientation, which the immigrant community seems to be carrying over here as well, especially for the woman, who is considered the care taker of the family.
She often is so busy taking care of the house and her family and children that she doesn't realize that she needs to have a medical check up, and that is where we are trying to orient the women, trying to make them understand that they should be careful about their own health, if they want a healthy family, or if they want their children and the whole family's well being to be take care of, it is very, very crucial that women start taking care of their own health.
Problems of navigating the health care system, it is just way too difficult for them to comprehend. How do they navigate the health system?
If they get sick, even worse, if they don't have insurance or, even still worse, if they are undocumented, what happens? Where do they go? How do they navigate the health care system? Who provides services that they require?
Lack of language information. Sometimes it does really kind of shock us because we are told that all hospitals and clinics should be having interpreters to help clients with different interpretation services.
In reality, that doesn't seem to be the case. We have had families where children have helped as interpreters, trying to interpret what is happening with the mother or with the father to the medical care providers.
If it happens to be a situation where they don't have children that are grown, who speak English, these people have nobody to interpret for them.
This is, again, another issue that I think is a serious problem and I hope we can do something about it.
MS. BREEN: Could I ask you a question about that? You said you were told that there would be interpreters. Is there a state law in California? Is there an understanding that hospitals should provide those services? What did you mean by that?
MS. UPADHYAH: Well, what we have been told, and also when we have had discussions with other non-profit organizations that are working around health issues, it seems that there is a law, that you need to have interpreters that can help you get services in different languages.
We have seen this not only in the hospitals, but we have seen it also in the court system, when we have had victims of domestic violence go to court.
They haven't been able to receive services in the languages that they are looking for. So, we in the office find ourselves driving clients to court, helping them with the interpretation with the judges and everybody, trying to interpret languages for the clients with hospitals and with clinics, and it is a project by itself, you know. So, that is one problem that we have seen.
Very few culturally competent providers. There have been cases where clients have been sick and have been hospitalized, but we are always trying to figure out if there are South Asian doctors or South Asian nurses that are present in the hospitals that could kind of explain the situation of the clients in a more culturally appropriate way. That is, again, where we see problems, when clients actually go to seek health care services.
MS. MAYS: Before you leave that point, can you tell us, give us some examples of what you mean by that? Does it mean that -- I don't know, if it was a woman, if her husband should be there?
Kind of frame it so that we understand in the sense of, if we were to make recommendations, what some of those culturally competent needs are either in the client physician health care provider interaction, or in a hospitalization setting?
MS. UPADHYAH: When we say culturally competent, I think first and foremost we are talking about the language, of course.
The second thing, what we are looking at is, you know, just trying to explain to the client what is actually happening with him or her in a way whereby he or she can understand it.
What we have is seen is, because we do get calls from hospitals where we have doctors on a three-way call, or sometimes even social workers and even nurses with staff in the South Asian network and the client on a three-way call, trying to explain the client situation and make her understand better that this is what is happening and this is what she has to do, and the process of her medication and everything. So, just a way of, I think, trying to figure out how best you can work with the client.
Another thing we have started doing very recently is having cultural competency training, especially in the field of domestic violence.
We saw a big problem even when women were being beaten up and they were calling 911, and they were getting assistance from the law enforcement. There were issues that were coming out.
I mean, we are talking about a whole new culture that is very different. So, I think it is important to start having some cultural trainings around cultural nuances which will help the client as well as the providers, be it the health or be it the law enforcement, just any services, keeping in mind the growth of the South Asian population.
Of course, a really big problem, which I did mention in the very beginning, that we see is, looking at all these issues that we face on a daily basis, the feedback that keeps coming from the community, we do a lot of extensive outreach into the South Asian community.
We have a group of about eight community organizers. The outreach is focused basically in places of worship. We do a lot of outreach in mosques, temples, community and religious events.
So, when we look at the feedback that we get about the problems that the community is having around health issues, the lack of awareness around issues related to cardiovascular issues, diabetes -- which is killing a lot of South Asians right now -- just all kinds of health issues and accessing health care services.
The basic line, what we feel we are lacking, is data. We just don't seem to be having enough research done on this population that can actually substantiate the work that needs to be done for the well being of the South Asian community.
Even in the office, many times when I am sitting down to write grants, I have a problem, because it is all statistics, and we have nothing to claim.
I think the only thing we have to claim right now is the brown paper, that Lelam was involved in. That is the first research of any kind that has been done on the South Asian community.
It is still very limited. If you look at the population of the South Asians right now in America, the brown paper, I think, is just the first step.
There are still many issues that need to be considered, and we always find ourselves struggling, when you are trying to convince funding agencies, or even when you are trying to convince health care providers, of what the community is actually experiencing.
For example, when the budgets were kind of cut and the county decided to close down 12 of the PPP clinics, we are at a loss right now, because we have all this uninsured population that we were referring to all these county clinics.
Now that these 12 clinics have closed, we don't know where to send them. The picture that we see again is, you know, South Asians are very well educated, they don't need these services, they are doing very well. They are all doctors and lawyers and engineers. That is not the case.
I think we need more data and more research into these populations that we are talking about, which are definitely underserved, have no access to health care services.
Even if they do have access, they could be insured. A certain population does have insurance from their companies or they got insurance on their own, but then they have these other problems of language. They have problems of transportation. They have problems of trying to get the issues explained to them in a more culturally and linguistically appropriate way.
So, it is not only the underserved that need these kinds of services. It is just everybody across the spectrum that requires these services.
Going back to the work of the South Asian Network, on the small scale that we are able to work and help the community, some successful factors that we have seen over the last couple of years, through the health programs that we have conducted is, we have seen a really interesting change in the community when we have been able to provide interpreters. Those cases have really been kind of taken care of very well.
Also, involving community and South Asian health experts in planning initiatives, if anybody is planning an initiative for the South Asian community, we have seen that it has worked very well when certain community or health experts have been involved.
Here, again, we are bringing some issues that are related to the community which the planning people may not know.
So, what are those nuances that we have to take care of? What are those issues that need to be addressed to make that particular program successful?
It calls for the involvement of more South Asian people, experts and planners, when developing any program.
Use research data to inform program development. I would again go back to the lack of data and the necessity to have more research conducted on the South Asian community which would, again eventually lead to informing the policy planners and developing people about the kinds of programs that would be important and the kinds of programs that would be a success, because then we are backing it up with a lot of research information.
In short, providers are culturally competent. We have seen this as a success because we are doing it through the office right now, in all areas related to hate crimes.
I just want to kind of back track a little bit here, because we were working on hate crimes prior to September 11, but after September 11, when the backlash was particularly on the South Asian community, we scaled up our activities against hate crimes.
It was interesting to see the effects of hate crimes and what it did to the community in affecting their health.
One area that we saw, it was amazing to see that the outreach that we were doing so well for the community, which was such a success, suffered a huge set back.
The community was very hesitant to talk to the outreach community organizers. They were not willing to divulge too much information.
They were very concerned about giving their home numbers or even their addresses, and we were even asked with questions like, with all that the INS is doing, why do you need all this information. We would rather not give you the information at all.
So, we saw ourselves, September, October, November, December, our outreach was absolutely zero. The community just wanted to have nothing where you would have to give some kind of information.
It took us a long time to kind of go back to them and make them understand that, even though there is the situation of being traumatized, there is the scare that is taking place right now, they still need to exercise their rights and look for health care access.
If you are a victim of domestic violence, don't hesitate in calling the law enforcement people. Nothing is going to happen to you. You need to seek services that are out there.
We built it up pretty well. Then, again, we had the situation where certain countries were made to register. Amongst those countries, two were countries from South Asia, Pakistan and Bangladesh.
So, all Pakistani and Bangladeshi males above the age of 16 had to be at the INS to register. If they didn't, they were detained or deported.
Again, we saw the backlash on the community and what was taking the back seat was, again, the health. They were not going to be accessing health care services, because it was just a situation where they were way too traumatized to be seeking any services, even though a lot of them happened to be green card holders, permanent residents. Even they were afraid to seek services.
The other area where we saw people really scared were the senior citizens. We have senior citizens who are American citizens who were afraid to say, we need these services, because they said, you know, what is going to happen. Who do we give our information to. Will this information used against us.
It has been pretty difficult. The last six or seven months in the office have been really tough, but I presume there will come a time when we see a better situation.
The other thing that I think we wanted to recommend was provide extensive support services. So, what the South Asian Network has done is, because we have our capacity -- you know, we work with very limited staff, only nine of us right now, we don't have the resources for a big office or to be hiring more staff. A lot of work that we do is also voluntary.
So, what we have done is, we have teamed up with other mainstream organizations, API organizations, so that we can build up our network in providing services, because we don't have the kind of capacity that we need, looking at the growth of the South Asian population.
So, we do a lot of work with OCAPICA(?), we do a lot of work with the Asian Pacific American Legal Center, if they need lawyers, if they need attorneys for their cases.
We don't have any attorneys or doctors on board or on staff. We are all just community activists. So, the way we build up the office is, we do a lot of referrals with other mainstream organizations and assure that the clients get services, even though we don't have the capacity in house.
So, when I see extensive support services, I think it would be important for everybody who is interested in working with the South Asian group to be providing those support services. That is just one of my recommendations.
If we go back to this issue of, what is happening to the community right now, as far as health is concerned, definitely the budget cuts have been a huge disaster, especially with the closure of the clinics.
We are still seeing difficulty in conducting outreach, as a backlash of 911, and then again with the new rules that have come up as far as the registration issues are concerned.
We have seen limited access for information regarding health care services to the community being kind of hit again.
We knew that there was very little information for the community, especially when we talked about even education materials. We see nothing in South Asian languages.
What we are doing right now is, we are picking up materials from other organizations and translating it in house, so that the community gets more access to information.
We have developed brochures on breast cancer education and awareness in I think about seven South Asian languages. We have developed brochures and information materials on domestic violence in all seven languages.
We have materials in relation to hate crimes, basically all the programs and whatever we feel is important to get out to the community, looking at the language barrier that exists. We translate all those materials into South Asian languages.
It does kind of take a lot from us because we don't have resources. We do it with the budget that we have or on a limited basis, but I think when putting a program in place, and especially for organizations like universities and funding agencies, when they are looking at the whole spectrum of the community that we are working with, it does seem important to develop materials in different South Asian languages, too, to ensure access to information, because of the language barriers that we are talking about.
Right now, we do see a lot of fear and suspicion in seeking any kind of services, where personal information is required.
This could be a problem if we do decide to have research at any given point in time, because it might call for getting the community together, getting more information out of them, having to spend time with them and talking to them about their personal issues, especially in relation to health.
So, we might also have to try building bridges to the community, if we do decide to have some kind of a survey or research or a need assessment done.
How do we build the confidence that that information is going to be used for their betterment, and the objective, of course, is definitely to develop programs that could be helpful to the South Asian community.
In the given climate right now, this could be a problem, and I think we need to find ways of working around it.
I did mention earlier there is hesitancy and unwillingness to divulge any kind of personal information. There is also lack of information regarding registration affecting even documented South Asians.
I would again go back to this climate of fear and suspicion, where it is not only the undocumented group that is feeling insecure right now. Even documented people are feeling insecure.
So, how do we bridge this gap and kind of convince them that we are here to make a difference in their lives and to help them, rather than have them look upon us as people they do not trust.
I think when we talk about the whole gamut of having surveys and conducting research, we need to kind of take this into consideration.
It might change if we see the political climate change, but if it turns out to be even more difficult than we are seeing right now, that would be a major challenge to conduct any kind of research within the community.
I think basically I just kind of summed up the problems that we see, and some of the successes. If there are any questions?
MS. MAYS: Thank you very much. What we will do is, we will start with questions from the panel here, and then we will move to the audience. Any of my colleagues?
MR. LENGERICH: Thank you, a very nice presentation and very informative. You had mentioned specifically a breast screening program, and I guess I thought of the CDC program that is available to low income women.
I guess I would like to just broaden that and ask you a question about that and that is, what is your interaction, then, or what recommendations would you make in terms of your interaction with the national programs that are there and available to provide health services, such as a breast cancer program for the women of South Asian descent.
MS. UPADHYAH: What we are doing right now with the breast education program is, we are working very closely with BCDP, the Breast Cancer Early Detection Program.
We have referral services for the South Asian women who do show an interest to have a mammogram done, especially uninsured women 40 and above. That is the group that we are working with.
We call up the BCDP office and try to get them free mammogram screening if they come from really low income families.
Otherwise, the situation is it will have to be a very nominal amount to get the mammograms done, and the follow up is done in house by the office. We keep calling them up to ask what is happening, do they need any kind of services.
What we have seen in the area of beast cancer is there is a complete lack of awareness. Also, we need to look at it from the cultural issues in South Asia. In South Asia, having a mammogram every year is not considered important. They don't do it. They just don't do it.
So, when they move here and we are trying to make them understand the reason to do it, it is already a challenge for them to understand why do they need to have a mammogram once a year.
The other thing we have seen, it is again cultural issues where there is fear of the report, and there is also a lot of shyness, because they don't want to be exposing themselves, especially to male doctors.
This has become an issue where we have kind of insisted with the women that they need to go for a mammogram and the first question is, is it going to be a woman who is going to do it. If it is going to be a man, no, they will not go.
So, these are the cultural issues that I am talking about. So, I think it is just the awareness, and we might not be able to have women providers all the time, but just the basic importance of making them aware that they need to have a mammogram. They have to go back once a year, especially if they are above 40.
It is something we need to start with and, what I can see is, there is a lack of education materials. There are no materials for us to put out for them and say, read this, or call up these numbers, or these are agencies that can help you, these are organizations that can help you whether you are uninsured or you are undocumented.
Right now, what has happened is we have been able to kind of, you know, build up relations with a lot of organizations that are willing to take even undocumented people, which I think is extremely important for us.
I think it is just basically trying to educate the South Asian community from the very beginning about the importance, and this, I feel, can be done only when we have appropriate materials that are translated for them to see.
You know, even though there are ads on the television and there are ads on the radio, we are talking about families that might not even be having a TV, to be frank with everybody in the room. That is the group that we are working with.
They don't have time and they might not even be owning a television. Even if they do, they don't understand the language.
If we are looking at interpretation being provided by children of family members, that could not be convincing enough for them. They need education that is coming to them from more convincing groups or more convincing people.
I would suggest just going back and trying to get more materials and some programs to educate the women.
MR. LENGERICH: Thank you. I would like to ask a second question, if I could, and that relates to the data part that you had mentioned, and actually, this has two parts.
One is, you mentioned that you need more data. Can you give us a sense of what sort of data would be most useful, and I guess two broad categories would be the national data, census data, that the national government would collect, which probably wouldn't be very specific about your local communities, or is it local community data that you would be in most need of.
Then this follow up question is, so if you have that data, do you have people who are trained and could use it, or is part of what would be beneficial also be training programs for the use of health data?
MS. UPADHYAH: I think I would look at it both ways. Definitely, the data will help us plan better programs, and also help to know the need of the community.
I think right now the work that we are doing, I wouldn't say we are assuming the programs that we are developing. It is information that is coming from the community and our work with them on a daily basis, and our interaction with the groups that we are working with, which is making us understand that these particular programs are important.
If you have a community event of about 100 women and you throw in a question about mammogram, and you have about 70 hands that go up saying that we don't know what a mammogram is, or the importance of why we need to have one, but then you don't have data to substantiate that when you kind of put it in front of policy planners, or even in front of funding agencies that are looking for statistics all the time, how do you get your word across to them and make them understand that it is a problem?
That is where I think I see that the communities needs would be better addressed if we had some mechanisms to get the research in place, and it would definitely help a lot of agencies, South Asian agencies as well as funding agencies, as well as program planners and developers, to develop programs actually addressing the needs of the community, rather than just assume and say this could be a problem.
MR. LENGERICH: The second part of that question had to do with the users of the data. So, do you have people that are trained and experts at using the data, or is it also the training programs that you are using?
MS. UPADHYAH: I think we need a lot of training. Going back again, I would say the only data we have seen right now, which is very specific, is the brown paper that has come out by a group of South Asian individuals who thought it was time that we did something about it.
We do need training programs. I think this would be across the board for all South Asian organizations, as well as other organizations that are hoping to work with this community. It calls for a lot of training programs on how to use the data.
MS. MAYS: Questions from the audience? Julian, can I ask you just to comment quickly on the project that New California is involved in, that is attempting to bring this information about the right to translators? Maybe you can share just a little bit about it.
MR. DO: A pleasure. New California Media is just a network of ethnic medias in the state, and we are actually going national this year.
We were fortunate to have a generous grant from the California Endowment to do a campaign on language access. This is a two-year campaign.
On top of that, we also do a survey in 12 different languages of the health care status of the different communities, and the South Asian community is one of the focuses.
One of the things in this campaign that we are doing is to raise the awareness that there is actually a federal and also state laws that would allow patients rights, that you can visit any medical institutions and you can actually ask for an interpreter, because it is your right.
Whether that service or services are available yet or not, it is sort of a chicken and egg situation. If you don't ask for it, then people won't know about it and the state policy makers will not take that into consideration to allocate resources for this.
So, we are launching this campaign in June, and we will have a survey done and, once that is done, we would like to make that available to everyone.
Actually, I have one question, if I may. You have a breakdown of different communities in the South Asian group, India, Pakistan, Sri Lanka, and so on. Could you comment on if there is a breakdown as to the severity of health care disparities in these groups?
MS. UPADHYAH: I think when we look at the South Asian community, one group that we have seen the disparity, I would say, because of the language, also because of socioeconomic reasons, would be the Bangladeshi community.
There are communities that don't speak any other language but Bangla. We don't have the exact figures, but we are told that there are something like about 10,000 Bangladeshis that live in Koreatown, a very large population in Koreatown.
There is a significant population, again, toward the Hawthorne Inglewood area, but the larger population is in Koreatown.
This is one group within the South Asian communities that we see, economically as well, and with language barriers, truly need.
If we talk about the disparity, I think we would want to see much more with the Bangladesh community also, as opposed to the other communities.
MS. MAYS: Great. On behalf of the committee, I really want to thank you.
MS. FOONG: Good morning. My name is Hiang Foong(?). I work with a program known as Pals for Health(?). We have been, for the past 10 years, actually working to improve language access issues in the Los Angeles and Orange County area. Good morning, Perdita. I have several questions for you, if I may.
When you were referring to health care providers as well as health care facilities that were required by particular laws to offer interpreters to limited English proficient South Asians, or anyone else, for that matter, that are LEP, were you referring to Title VI of the 1964 Civil Rights Act, that requires that providers that receive federal funding offer meaningful access to patients who do not speak English very well? Is that what you were referring to?
MS. UPADHYAH: I was just kind of referring to the issues that we have had these discussions before. I mean, when a hospital like Cedars Sinai calls us and says, we want your services for interpretation, then we are wondering, don't they have interpreters?
Those clients that have gone and asked for interpreters are calling back and saying, there is nobody that speaks the language.
I am not very aware of the rights that you are talking about, but is it clear?
MS. FOONG: Yes, I guess that probably would apply in terms of the civil rights act, that providers or researchers, or anyone that receives federal funds are required to offer meaningful access to health care services, and that has been deciphered by the office for civil rights to mean the provision of health care interpreters, and also materials that are translated for individuals that are in the service area of the health care system.
Now, the two other questions I have for Perdita, if I may are, do you think that limited English proficient South Asians are aware that there are federal as well as state guidelines, in the state of California, that actually allow them to ask for interpreters from their health care providers?
MS. UPADHYAH: They are aware about that. In fact, we keep telling them this, too. We don't only get calls from hospitals but even from social workers because they say, we can't understand what the client is trying to say and what do we do.
So, the community is aware that it is their right, but they don't get the services when they ask for it.
MS. FOONG: I guess my last question to you is, what do you recommend could and should be done to increase the awareness of health care providers about federal as well as state guidelines around the provision of health care interpreters?
MS. UPADHYAH: I think we just need to be having more advocacy programs, trying to make them understand that this is a client's right, and there have to be provisions made in hospitals and clinics and all social service providing agencies that, if it is a right of a client, they need to make provisions to meet those rights, and how they make the provisions would be for them to kind of come up with, strategies.
I think it calls for a lot of advocacy campaign, because we are not seeing it only in the health sector. We are seeing it even in the court system.
I mentioned previously, victims of domestic violence have been told to appear in court, but they have nobody to help them with the interpretation.
We have very limited court interpreters in the South Asian language. They are driving from one court to the other and you can't get them when this particular client has been called.
So, staff from the office are providing interpretation in court for the domestic victim clients. So, I think we are seeing it more and more.
We may be also seeing it because, again, I would see the population as increasing. It is growing really fast, and maybe the service providing agencies are not able to comprehend what strategies they need to come up with such a fast emerging population to ensure those services are met.
MS. FOONG: I guess to sum it up, you are recommending that more advocacy and training for health care providers and administrators?
MS. UPADHYAH: Yes.
MS. MAYS: Any other questions before we move on? In terms of the Civil Rights Act, can you say specifically which one it is?
MS. FOONG: It is the Title VI of the 1964 Civil Rights Act. Also, I think back in I believe the year 2000, the Executive Order was issued by then-President Clinton, EO13166, that also requested that federal agencies provide a plan of how they are approaching the needs of residents in this country in a culturally and linguistically appropriate manner.
The Civil Rights Act, 1964, Title IV of the Civil Rights Act, deciphered by the Office of Civil Rights, to mean that, under the clause of national origin, individuals who are limited English proficient are allowed to ask for interpreters to be able to have meaningful communication with their health care providers.
MS. MAYS: Great, thank you very much. Could I just ask one more question in regards to that? Is mental health included under health?
MS. FOONG: Actually, it covers any -- when they refer to federal fund recipient, either you are a researcher, if you are conducting a clinical trial, if you are a lab that is doing blood, if you receive any kind of federal funding from MediCal, Medicare on down, it covers.
So, it follows the trail of money. So, if you get a dollar from the feds, you are required to offer meaningful access to all individuals to the services that you offer funded by the federal government. So, that includes mental health if they do receive funds from the federal government.
MS. MAYS: Perfect. Okay, any others? Okay, we thank you because your presentation has not only provided us with information, but I think provided us with food for thought about what the recommendations need to be.
So, we are very appreciative of both what you presented and the discussion that it sparked. So, it has been very helpful.
MS. UPADHYAH: Thank you so much for giving the South Asian Network this opportunity, and we would be only happy to help you in the future.
MS. MAYS: Great, thank you. Our next presenter is going to be Dr. Kagawa Singer. We kind of changed things around a little bit, but we know she is here and I think has a power point presentation there, and we will get a little help.
Before she begins, one of the things I would like to do is, on behalf of the committee, to officially in the record make sure that we thank her.
Part of the organizing of -- if you haven't noticed, she is hugging everybody out here. That should tell you something about the connections that she has, and she has been very generous, working back and forth on this.
Both in terms of our ability to be able to distribute information as well as our ability to be able to reach out to some of the communities that we reached out to, it has only happened because of my colleague.
So, we really do want to thank you, because the quality of our hearing has been tremendous. What individuals have brought to us, I mean, we are honored to have received.
I feel as if we didn't get just a fact, but what we have gotten is their experience. I think what that is going to do is to help us to translate that into recommendations that we hope then will be translated into something that can make a difference.
So, I want to thank you very much for the time out of your life of work to help us to pull this hearing together. So, thank you very much.
Let me introduce you. While we are having a love fest, let me make sure everybody else does know officially who you are, and that it is also in the record.
Dr. Kagawa-Singer is an associate professor here in the school of public health, in the community health sciences department.
In addition, she is the principal investigator for the Southern California region of the Minority Training -- I am trying to get all the letters --
MS. KAGAWA-SINGER: Minority Cancer Control Research and Training Program.
MS. MAYS: Thank you. For those of you who don't know about that, I suggest that you catch her and talk with her about it.
Part of it is really dedicated to training young professionals to work in this area. She is also a member of AMCART, which you have heard referred to before. I could go on with all the different things that she is involved in.
I think she doesn't get sleep because of these involvements, but we are very happy to have her here, because part of what she is going to help us do is talk about some of the populations who, either because of size or geography, experience this lack of data. Thank you.
Agenda Item: Presentation by Dr. Kagawa-Singer.
MS. KAGAWA-SINGER: Thank you, and good morning, Madam Chair and members of the committee. It really is a very exciting opportunity for all of us to be here, and yes, I do know I think everybody here.
That is part of the issue, is because we don't have a very large body of researchers and community workers because of lack of funds, and the lack of funds have to do with the lack of data, so that we can't advocate as strongly as our needs warrant.
I apologize for being late this morning for multiple reasons, one of which was a technical difficulty. So, I have given you what is supposed to be one of the slides, and it has the Asian and Pacific Islander classification.
To the right of Asian you can write 32, which is what is listed there, and for Pacific Islanders, 22 groups. The ones that are supposed to be in red, but you will see it in a more faded type there, are Chinese, Filipino, Japanese, Korean, Vietnamese and Cambodian.
Asian Indians, as you have heard, are one of the largest API groups. However, I don't have it shaded because of the sampling issues and the lack of data that occurs in that community.
So, the six shaded ones on Asian -- Chinese, Filipino, Japanese, Korean, Vietnamese, Cambodian, and then Pacific Islanders, Hawaiian and Samoan -- are about the only ones that we have any data on.
So, what I will be reporting on primarily today are the about 28 other groups.
MS. BREEN: Now, what is the difference between the red and the green?
MS. KAGAWA-SINGER: Oh, you have the red and the green? Well, the red are the ones that we usually have data on. The greens are sometimes, and beginning to emerge.
MS. BREEN: Does that correspond to the size of the population?
MS. KAGAWA-SINGER: Not always, but usually. Like Samoans aren't really large, but because they have been able to advocate and they have some mechanisms to get some data, and there have been two funded studies on them, we have some data.
So, amongst those -- there are 54 in this group, and this came from the Census when people write in what their ethnicity is.
There are more than these, as we go into the subgroups within. For example, within the Laotian, there will be Hmong, Myan, there are about 12 different groups within Laotian, each with a different language.
So, within these groups, we have over 100 languages. This creates multiple problems, as you have heard over the last day and a half.
Probably the one blow that the API population took was the 1985 Heckler report on black and minority health. In there it states, the Asian Pacific Islander minority, in aggregate -- and this is the critical statement, in aggregate -- is healthier than all racial ethnic groups in the United States, including whites.
That was our death knell for any research in data collection, because the feeling was at that point, when the ethnic identifiers came out, it was to track disparities, either in health, social welfare, any of the areas.
Because what was seen in aggregate for Asian Pacific Islanders, they felt there was no problem, and therefore, we didn't need any attention and, therefore, we won't collect any data on us, which is what happened.
You can also see this was 1985. Now, they were using data from the 1970s, in which the only data that they collected at that time were Chinese, Japanese and I think Korean, maybe.
In the intervening time -- this also came up in a recent publication from the National Cancer Institute, in which they were talking about using Census data to try to calculate rates, and Nancy, perhaps you might be able to shed some light on this, but they were using for everyone, because of the problems with the 2000 census data and multiple races and all of that, that could be checked off, and the comparability, they were going to use 1975 census data.
Considering the Asian Pacific Islander population, as everyone sitting here is well aware, we have grown over about 400 percent since then.
So, anything that could have been calculated on populations at that point in time are useless to us at this point in time.
The other was that, well, there weren't enough numbers in 1975, population-wise, to figure out rates. . Therefore, we get left out of tables all the time. There is insufficient data. This becomes the mantra, unfortunately, for all of us who do research in API, or try to advocate for services.
This is a word that I have come up with in this class that I teach on API health, and it is my own language. What it stands for is the opening sentence in every article that you will read on API health.
So, we start out with, there is a lack of data but we are going to do the best we can. This is from the 2000 census web site of where APIs live, and this, then, addresses the sampling issues.
When we do population-based sampling on any of the national data bases, you can see that, unless you concentrate on particular geographic areas, you are going to get cell sizes of one, two, and they are going to then drop out of any data analyses, or Asians overall, because nationwide, then, the cells become too small to do anything with.
Then, the phrase at the bottom of most is, data insufficient for analyses, over and over and over again. I will go into that in just a moment for recommendations.
So, at this point in time, I am sure you heard yesterday, we have almost 12 million individuals. What I have broken down, the two or more Asian groups, or two or more API groups, is where we are getting mixed populations because of the intermarriages that are occurring.
That is creating a lot of havoc as well. I am on one study now in which we are looking at ethnic minority populations, and if a person is of mixed heritage -- for instance, Japanese and white, Japanese and black -- they will say, which one do you most identify with.
Some people say, I refuse to declare only one because I am both. They get dropped. They are not eligible for the sample. If they then say white, they are dropped from the sample because we are trying to get Japanese. So, this creates problems as well.
I will start out with my recommendations, and then I will try to back them up. So, the data collection of the small populations -- I will take for example the SEER data base as an example of one that has the possibility of a model for collecting small samples in sufficient numbers that we might be able to utilize them.
The other is in language. Over two thirds of our population, if you look at that list of 54 that you have in front of you, over two thirds of them are non-English speaking, and over a third of them are what are called linguistically isolated. So, there is no one over the age of 14 who speaks English.
We also run into the problem of children, as has been indicated, translating. How many of us who aren't health practitioners can translate medicalese when it is in English?
Then you ask a child to be translating words for medical treatments, or even anatomic sites, in which they don't even know the word for. So, literally, they make it up to try to help their parent out, and it has had some quite disastrous results.
Potentially, using community-based clinic utilization and outcome information for monolingual, low income populations, this is who they serve. They do extremely well with very little funds, and they could be a model of what could be done or how to access those populations. There are networks of them around the country addressing API groups specifically.
Use of community groups with language capacity for more sophisticated sampling procedures in high concentration areas.
There are a couple of surveys going on now in which they are trying to do, in language, nationally representative sampled groups. This might be a way in which those who are skilled and trained, from our community-based organizations, to be hired on as interviewers, to be able to administer these.
Then, addition of questions to assess acculturation and economic status which we know, especially on the health data bases, the economic aspect is missing, and we lose a lot in being able to look at problems and potential interventions.
As I mentioned, the increase of the API population since 1990, and then if we go back to 1975, as I indicated, the problems there, the growth has been, we are the largest in rate -- not the largest in size, that is the Hispanic Latino population -- but in rate, the API group is still the fastest growing.
In California, besides Hawaii, we were the first state to become a minority majority, so that only 45 percent of our population is now white in California. In Los Angeles, it is even more stark. It is predicted that we will have a 50 percent Latino population here in California by 2050.
So, how we count our minority groups and disaggregating them becomes extremely important for services and health status.
Now, a project that I am involved with -- and Susan Li and Jackie Tran are here, who are the project directors from that project, and we are looking at seven populations here in Los Angeles and Orange County that, except for two of them, have never been in any study or data base.
So, we have had to try to look at how to sample these groups in a way that will have some representativeness of the populations here in California.
I think Paul Ong may have mentioned yesterday how the API populations in California aren't representative of the national API groups, just because we have longer residents here, that we have an older population than the rest of the country.
So, some of those changes will be there, as well as the newer immigrants. Because we are Pacific Rim, we get many more new immigrants.
I purposely put down the single race versus the inclusive, because you can see, even with these very new groups, that there is a significant proportion of them now who are out-marrying, and that we are going to need to be able to capture the differences that are occurring in these populations.
In addition, if you will look at the Thai on the right, the star there, it is because the census data say that there are about 20,000 Thai in Los Angeles Orange, but the community folks say there are closer to 90,000.
So, we know that this occurs in all the populations because of undocumented individuals. In addition, there is still the suspicion, as Perdita indicated, on government folks.
These are primarily refugee countries, in which their relationship with their government is not a positive one. So, if you come as a government official, they look very wary on you, and then welfare reform hit, and 9-11, and all of these, in which the climate for new immigrants to this country is not a friendly one.
So, we get people who then refuse to answer the census, and then don't get counted, even though there has been a lot of outreach to the communities, to educate them about the need for it. There is still that very high level of suspicion.
MS. MAYS: If I can ask you a question, do you know if, when Census was done, the extent to which they participated with community groups to try and get people to participate?
MS. KAGAWA-SINGER: There was extensive outreach, but I said, even in spite of that. The behavioral risk factor survey in California of 2002, we just got the information from the office here in California.
So, there were only 331 respondents who were APIs. Then, again, the proviso at the very end, the director said, but there are not enough observations to do much analysis, when you get for Indonesians a cell of one.
The most, Japanese and Chinese, 78 and 48, so we might be able to do a little bit with that, and those are the ones in red, where there are at least four groups in which we might be able to do something, as long as we don't make it gender specific.
MR. HITCHCOCK: Are those inclusive, the categories with principal race?
MS. KAGAWA-SINGER: These are phone interviews and they self identify. So, I guess it is up to the respondent.
MR. HITCHCOCK: Are these the only guidelines that are allowed?
MS. KAGAWA-SINGER: That I don't know, whether they can pick more than one.
MS. BREEN: It is a federally funded survey.
MS. KAGAWA-SINGER: What is also notable for the behavioral risk factor survey is that, when it is sent back to, is it Washington where it is aggregated -- Atlanta -- when it is sent to Atlanta, it is aggregated as API total.
The only way that I could get, when I have tried to get behavioral risk factor survey by state -- because some of the states do break it out, but CDC and behavioral risk factor survey are only reported as an aggregate number.
When I have asked how do I get a disaggregated number, I thought I could get it from their tapes when they aggregate them. They said, no, you have to call every single state.
So, if we could get data that is at least centralized there, they have it on their tapes. If they could please ask for it in its form like this, and then aggregate it at the central office, that would be of great help to us.
MS. BREEN: Do you want CDC to request the disaggregated data as it is collected from the states, and aggregate it at CDC?
MS. KAGAWA-SINGER: Correct. The other, within Pacific Islanders, Pacific Islanders make up less than five percent of the Asian American Pacific Islander group which is why, on the 2000 census, they are two separate groups now, to begin to look at the within-group variation within Pacific Islanders.
Native Hawaiians make up almost 60 percent of the total Pacific Islander group, but I am sure, as you heard from most every presenter here, we have a bimodal distribution, and this is where the aggregation becomes so detrimental.
We are over-represented at the high and the low end. So, when you aggregate them, these high risk populations become invisible.
We have, for example, within the U.S. total population, 12.5 percent poverty, within the API overall, it is 13 percent, for Japanese it is seven percent, for Laotian it is 51, for Hmong it is 64, and for Cambodians, it is 47 percent poverty rates. You don't see those when you average everyone together.
The leading causes of death are no different than the general population, although Asian American Pacific Islander females are the only ethnic group where breast cancer, or cancer, is the number one cause of death.
So, what do we know about APIs and the smaller groups in general? I am from Berkeley, and this was the view of San Francisco that I would often have, but we have no clue. It is under a fog because there is no data.
We do know, when we do find data that is disaggregated, if you look at the far right, well, white and blacks are on the left, with the black African American group the red, but if you look to the far right, we have Laotians, Guamanians, which are primarily Chamorro, Samoans, and other islanders as high or higher than African Americans.
So, the problems within these populations are really significant, but it is very hard to address these without the data to back up a proposal.
The smoking rates within the API group are also the highest in the country. There are efforts through APCHO and APITAN to try to target these populations, but these numbers are not population based, because we don't have any population based data on these groups.
So do know, from the small studies that have been done, that these are the rates that we are dealing with, and the lung cancer rates are increasing and cardiovascular as well.
I was told, because there are no statistics on APIs and STDs that are easily available, that APIs don't have problems because they don't have sex, but considering that we are probably four fifths of the world -- see, we can be a model.
The down side of that, the reality is that we are what, four fifths of the population of the world, so that might have some indication.
I had very mixed reactions when I saw this drug company ad for sexually transmitted diseases, that there were Asians in the picture. Wow, we made it. Well, maybe not, but at least there is the recognition.
Birth rates, again, look very low, in APIs in California. However, the within group variation, these are the aggregated numbers again, note that. The same with STD rates.
They look very low compared to the other ethnic populations, but we have such variation. For example, going back to the family sizes, for Chinese and Japanese, it tends to be a little over two. For Hmong, it tends to be around 12. So, those kinds of variations aren't visible.
Eating disorders, we really don't know because of the lack of information. Hiang Foong is our resident ex-community expert on translation issues, and it is more than language. It is more than translation. It is the interpretation that we are most in need of for non-English speaking or limited English speaking populations.
Concepts don't translate. Very often I will see in the literature that Asians aren't prevention oriented. It is prevention with the technology that we offer in our medical care system, not prevention for protection of health.
If you think about Asian Pacific Islander health, indigenous health belief structures, it is the yin and the yang, or other types of balance issues, and that you live your life to be in harmony so that you maintain your health.
So, the food you eat, the activities you do, your entire life style is built around prevention illness. So, it is not prevention. So, the linguistic aspect, it is not prevention that they are against, it is unfamiliarity and ignorance at this point in time about the technology.
In Vietnam, about five years ago, perhaps -- Julian Do can correct me -- but I think the expenditure for the health of each individual in Vietnam about 10 years ago was one dollar per person per year.
Prevention doesn't fit into that kind of a framework. All you can do is treat the most emergent illness. I think very similar in India.
I know they are using the acidic acid as one of the tests they are trying throughout the country for cervical cancer screening. So, it is the technology that is the barrier at this point, or knowledge about it.
I had mentioned on my recommendations about acculturation. This slide, I think, is just an example of what we do know that acculturation does.
If you will look at the Japanese on the left, the major portion of the cancer load in Japan is stomach cancer. It is only nine percent in the United States. Colon cancer is much larger. Prostate cancer is the number one for U.S. Japanese males. It doesn't even show up in Japan.
So, the genetic basis doesn't change in that short a time. What does change is acculturation and life style issues. So, we know that five percent of diseases are genetically based, 95 percent is life style.
So, we know that with the new immigrant Asian Pacific Islanders in this country, the disease burden is going to increase dramatically, unless we begin intervening now on education and outreach for prevention services, but that requires we have numbers, and at this point, we don't have any.
MS. MAYS: I am trying to understand why there is not prostate cancer in Japan.
MS. KAGAWA-SINGER: As far as the top five. There will be cancer, but what emerges is that this change in patterns of cancer changed dramatically after one generation in this country.
MS. MAYS: After one generation?
MS. KAGAWA-SINGER: One generation.
MS. MAYS: And it is all like acculturation life style?
MS. KAGAWA-SINGER: Japanese Americans, in Japan, the breast cancer rates are one fourth the rates they are for the United States, for total ethnic. Japanese Americans, in a 2002 report by Deepan(?) and colleagues from USC --
MS. MAYS: And they are first generation; is that what you are saying?
MS. KAGAWA-SINGER: No, I am saying in Japan the rates are one fourth the rates here.
MS. MAYS: No, I meant the ones here.
MS. KAGAWA-SINGER: No, just say the Japanese population overall, which tends to be second and third generation overall, have now -- they predicted in 2000, with 1998 data, that by the year 2000, if the rates continued, that Japanese Americans would have rates higher than white American females, who have the highest rates in the world.
So, in two generations, genetically nothing has changed, but this is what we are predicting, this huge epidemic within the API population for many of these diseases within a short period of time, unless we begin intervening now. Since we don't have numbers, we can't get the money to do the programs to do the outreach.
Similarly, in China, Hong Kong and the United States Chinese, you will notice, again, differences, where colon cancer doesn't show up in China and the relationship, the numbers, change significantly. So, looking at the impact of life style.
The same for Filipinos. What you can't see down there is prostate as well and non-Hodgkins lymphoma is what is up on top, and it doesn't show up in the Philippines.
When we look at outcomes, what is interesting is looking at differences by ethnic group and what impact it may have on treatment outcomes. I just use cancer. That is my particular area, but this happens as well for cardiovascular and diabetes treatment.
For lumpectomy, which is considered breast conserving therapy, the choice of treatment, if the woman is eligible for this choice, for Anglo women, 80 percent choose reconstruction and about the same for lumpectomy, whereas, for the Japanese and Chinese, it is much, much lower. So, does a mastectomy have better outcomes perhaps than lumpectomy, and some of the recent data is kind of controversial on that, but it is showing that there might be a slight advantage to have a mastectomy.
So, could this be one of the reasons? There appear to be cultural reasons for the choices in treatment, and primarily it sort of echoes that Perdito was saying, that these women know that, if they were to have a lumpectomy, then they have to have radiation therapy with it.
Radiation therapy is every day for six weeks, which means that somebody is going to have to drive them in, if they can't drive themselves, or they are going to be, with radiation or with adjuvant chemotherapy, they are just not going to feel as well and they won't be up to par and fulfill their role responsibilities.
So, they say, just do the mastectomy, get it over with and I don't have to go through anything else. I don't have to bother anyone else.
Then we have the issue here in Los Angeles of, when you ask about ethnic group -- and this will be my plug for acculturation -- it is what are they acculturating to.
Then we have the blending that occurs when you have mixed ethnicities, and how does that affect life style choices, and do the categories mean everything that we think they mean if we take all Japanese or all Chinese or all Chamorro.
So, again, my recommendations, then, are for data collection on small populations, the use of community-based clinics, the use of those with language capacity for more sophisticated sampling.
One of the recommendations we had made here in California was for outreach messages and perhaps to contract with the CBOs who specialize in those communities and have 800 numbers that could be directed toward those communities to do information outreach.
They felt that was too expensive. They weren't going to do that. So, instead, I will just put my plug in and my opinion that then the communities are once again without services.
Some examples, this is again from the PATH(?) program and perhaps Susan or Jackie can answer any questions about this, but what we did was to try to figure out how in the world we were going to do outreach to these groups -- this was a CDC Reach(?) 2010 funded grant -- and how we were going to sample on the baseline and follow up surveys.
So, we worked with Paul Ong's center in getting GIS mapping done for each of the communities, so they only represent those over five percent of that particular ethnic population.
As you can see, there are two centers for the Thai community, and those are the seven that I mentioned we were working with.
So, they are in different, somewhat overlapping, areas for the Laotian, Cambodian and Samoan populations, but unique unto themselves as well.
What I would recommend -- let me just go back. On the sampling frame, what we then did was to work with the groups in health and asking them to identify for us where the would most likely get as representative a sample of their populations as possible.
So, for example, the Cambodian group, we asked them to sample by socioeconomic status, by language ability, and by outreach sites for all the groups, and then by age categories.
So, they were to do quota sampling within each of the cells for us, with high, medium and low incomes, monolingual, bilingual, English only, and then outreach sites was up to each community group to identify, where they would most likely get women that represented these various groups.
So, within the Cambodian community, it was generally different temples and markets. For the Laotian community, again, it was temples and also home to home. This community does not have any media. Therefore, they said their outreach had to be done home to home and, due to the nature of the community, that they didn't trust people, that they wouldn't aggregate to do things as a community function. So, you had to go to them individually, and this would only be by people who already were trusted community workers.
For the Tongan, it was, again, in churches, but they also had to look at different ones. For example, the Cambodian, they were primarily Buddhist temples, and for the Tongan, it was Church of Tonga, Methodist, Mormon and Seventh Day Adventists, because they have different populations within the Tongan community, depending on which church you belong to.
So, those were the kinds of within-group variation that we wanted to capture on our sampling plan within each of these areas, and then ask them to map out the area and also select disparate groups, so we could get a mapping of the entire community.
This was another project that I was working on. What I often get from people, when I am working on survey development, is give me two questions on ethnicity.
I would just argue, no, you can't do that, and kind of drop it at that. They will say, give me one acculturation question and I say, well, I can't do that either.
I felt, well, if I keep saying I can't, then they will do what they think is needed, and then it won't get done, one, either at all, or it won't be done in a way that I think is usable.
So, what I came up with are some questions that I think might be able to capture that. This was working with a cancer data set.
So, what I recommend is that you use your usual demographics but then ask, how do you identify your ethnic background or heritage by the OMB categories, plus the cancer tumor registry categories are slightly different. Then, ask them, other than that, to specify.
For place of birth, if not the United States, your age at immigration. For a lot of the health status indicators, your length of time in the United States is a major factor.
Degree of value, pride or identification of your ethnic heritage, specify, and then I put as many as needed, from not at all to completely, and then how much do you identify with the dominant U.S. modern culture, again, on a one to ten, not at all, to completely.
Then it becomes health question specific. Do you know where you can get health care. Do you have a regular doctor for regular check ups, which is one question which is often on, for example, the National Health Interview Survey.
The other question is, when you are sick -- or do you have regular care? They may say no, but when you are sick they may say yes, because they have a care taker that they could go to, or it is the emergency room.
So, how confident do you feel using the health care system, which is often the major barrier. We don't have a logical system. They have to go to multiple places. We separate mental health and physical health which, in Asian and Pacific Islander cultures, doesn't make any sense. You know, you are one person. Why do you have to go to two different practitioners.
How confident do you feel finding the appropriate health care people to talk to. Then, if you don't understand what the provider is recommending, do you feel you can ask questions. Lastly, are you satisfied with the answers.
Many times they will nod that they heard, not that they understood, but that they heard, and then they walk away and they go, I have no clue what he just told me, and then they give me pamphlets to read and it is in English and I can't read it, so they just toss them.
So, if we can address some of those things, maybe we can clear the fog away a little bit and have more opportunities to serve the populations in need. Thank you.
MS. MAYS: Thank you very much. Let me start with the panel. Any questions?
MR. LENGERICH: Thank you very much. First of all, a request. Could we get a copy of your slides? I think that would be very helpful, because they have a lot of good information in there that I wasn't able to capture all that I wanted to in notes. So, if we could get a copy of those, that would be very helpful.
Then, another question had to do with the issue of those changing cancer incidence rates, I assume, after immigration.
I guess I am wondering if we have additional data to show the utilization of health care services after immigration, or the variety of experiences in the health care system after immigration.
I guess I was struck by the prostate cancer as well, and given that prostate cancer occurs late in life, and is present in a large percentage, if not a majority of men, over 70, 75 years of age, I am just wondering how much of this is detection that is coming up on our data now, because it is being detected here, whereas it wasn't being detected in their home country.
I would also like to have some information on the utilization of services, particularly the screening services. Do we have any of that kind of information?
MS. KAGAWA-SINGER: Very little. As I said, it will usually be on only four or five of the multiple groups. The prostate cancer is Japanese, or at least the major shift that has occurred, and that was the largest percentage for Japanese American men.
You will also note that comparable data in Japan does not show prostate cancer. So, we know there is something else going on.
For the other groups, we don't have the information yet, but we definitely know, just like other groups, men underutilize health care.
What we have done with the PATH program and another one I did with the Hmong was to include the men on the breast and cervical cancer screening education, so that they understood why.
What the focus groups we had on that initially said over and over again, when we had the men's focus groups, they said, what about us, what about diabetes, what about hypertension. So, they want to know, but we just don't have the people power to be able to go out and do that kind of education.
You also have a flyer for a conference tomorrow that we are having on API health, and they will go into more detail, if any of you are able to stay for that, on each of the disease categories.
Now, one thing that Perdito, and I think Lelam might have mentioned with the brown paper, that the South Asian population, even though they do have a segment, like Japanese Americans or some of the Asian groups are over-represented at the higher education, the South Asians, as yet, inexplicably, have the highest rates of cardiovascular disease and diabetes, I think equal to African Americans.
Such a large percentage of them are vegetarian. It just doesn't kind of compute. Those of us in the API population are interested in studying that, but there is nothing yet in the literature to explain why. It is documented that it exists, but as to why, it hasn't been addressed yet.
MR. LENGERICH: Just finally, a comment, I share your concern about the BRFSS data. I am involved with a project that is attempting to look at the BRFSS data on a county specific basis.
Those data, I am not sure, but to get county specific data, they have to be requested from each of the individual states. So, we are about to go to each of the states.
I understand the other side of that, that this is a federally supported, but a state-based survey. So, when we get to the issue of small numbers, there is also the proprietariness of that data and how it might get used. So, we are forced to go to each of the states to get their data, so that we can get that county specific data as well.
MS. KAGAWA-SINGER: I guess one more addition on the data is that another major barrier is at NIH, it is institute specific, whether Asian Pacific Islanders are included in minority populations.
Except for ANCART, which was the first Asian American one, and then there is also one in Philadelphia with Grace Maa, but those were the first ones funded.
Within NIH, within NCI, Asian Americans are not eligible for any of the minority training or supplement grants, because we are not a minority. I talked to Dr.Von Eschenbach who told me to write to him about that, which I will do.
There was also another federal project that had asked for definitions of health by ethnic populations. I called up the project officer on it and she said, oh, great, we wanted anthropologists to answer this call, and I am an anthropologist.
I said, but you have African American and Hispanic listed here and I work with the Asian American population, Pacific Islanders.
She said, oh, I am sorry, according to the federal government, you are not a minority. I said, oh, thank you, my whole life I thought I was. You just cleared that up for me.
That was just another door that was closed to us because of that 1985 report, I think. At least, that is where I trace it back to, to the inability.
MS. MAYS: Can I ask you to go back a couple of slides? Yes, right there. I want to make sure I understand for number three, where it says degree of value, pride or identification as.
Walk me through what you are trying to accomplish with this one, just so I can understand. You then say, your ethnicity and heritage and then the person says what they are, and then after that it is -- what is the one to ten, so I understand?
MS. KAGAWA-SINGER: For example, how much is it a part of your personal identity. So, if you are -- well, say, my husband is Viennese and German. The Viennese he doesn't identify with, the Austrian he doesn't, the German he does. If a person is Japanese and Chinese, they may be equally with both.
The dominant U.S. modern culture could also be very high. This goes back to some of the acculturation scales that are bidimensional. So, you can be truly bicultural, where you have high identification -- for example, with me.
I would be highly identified and able to function, I hope, in the dominant society as well as the Japanese American community, and I have very strong identities there.
So, it is not that I have given up my Japanese identity and taken on that, which is called assimilation, but it is being able to be bicultural or multicultural, depending on a person's background.
In Hawaii, my rule is, in Hawaii, it is a minimum of four and then you sort of go from there. So, which one is their identity, of those four. It depends on which day it is and which family member they are with.
How, then, does that -- using that as a proxy, then, of how does that affect perhaps the foods they eat. That goes like here, what I often ask is, how many times have you, in the last seven days, eaten food from the same ethnic group for the last seven days.
If you are from Los Angeles, nobody will raise their hand. You eat Mexican one day, Thai another, Chinese, French. So, those are the kinds of indicators that seem to affect health outcomes.
We know from mental health, the more you have a strong positive identity if you are non-white, then the better your mental health is, depending upon a lot of other indicators, but just as one strong element, that that may be significant.
MS. BREEN: Can I follow up on that? Do you know how this is administered, or are you going to do that? Let me ask about administration first.
So, if somebody had three different ethnic backgrounds in number one, then is that the basis for specifying one through 10? You would go through and do that for four different times, or how does this question get administered?
MS. KAGAWA-SINGER: Yes.
MR. LENGERICH: Then administration, before we get to analysis, then, what about 3B, then? How do you use 3B, then, in the example that you just gave here, that people in Los Angeles wouldn't eat the same food more than once a week, so how would they answer that kind of question?
MS. KAGAWA-SINGER: I wouldn't use food. To me, food is not a good indicator. How much do I identify as an individual with the dominant -- you know, am I able to function comfortably. I would put myself fairly high.
So, your question, then, is how does food affect it or what indicator would that be?
MR. LENGERICH: I guess I was just thinking it seems like there are a lot of local perception of the culture -- the perception of the culture is going to be fairly localized, I think.
So, I am wondering how a person, for instance, who is multi-cultural is going to perceive the U.S. modern culture, particularly in a place like Los Angeles, for example.
MS. BREEN: Isn't that the question? Are you asking people their degree of value, pride and identification in the dominant U.S. modern culture?
MS. KAGAWA-SINGER: Yes.
MS. BREEN: So, as a member of?
MR. LENGERICH: So, what is your interpretation.
MS. BREEN: What do you think the dominant is.
MR. LENGERICH: Yes, what is your interpretation of the dominant U.S. culture.
MS. KAGAWA-SINGER: It is interesting. I have this other acculturation scale, and we had to change it, because there are six minority ethnic groups of color, and then the seven sites also address -- all of them address white American women or European -- Euro American -- women.
All the groups of color had no problem filling out the questionnaire, because one of the first questions was like this one, your ethnic background.
Then the questionnaire went on. The only group that had problems with it were the Euro American women because they said, well, i don't have an ethnicity. So, we had to change that.
That just brought me up to the Hawaiian health survey. They have six groups that they aggregate their data into, but they ask the questions in 31 different ethnic groups, including European, German, Irish, Italian, English as six of the groups.
This is what they are doing in Canada as well. They require people to state their ethnicity. If they are Irish, if they are Scottish, if they are Welsh, they want that put down.
So, we made a similar kind of explanation for that questionnaire, and then people had no problem filling it out.
What they would say in that instance, for 3-A, they would say Irish and Scottish. Then they might put not at all with either of those and 10 on the dominant. You were going to ask a question on analysis?
MR. HITCHCOCK: I was just wondering if there was a scale or if you developed an index, or if you just used these questions.
MS. KAGAWA-SINGER: Not yet, because I have not actually administered it, other than kind of piloting it with people to see if it makes sense.
What I think would be more -- my own personal take on it, which is what I would like to do some work on, as far as research is, for the health acculturation is, how well can you navigate the system.
I think what you have heard in the testimony thus far, that is where the breakdown is. It is not their ethnicity, it is not their language per se, but it is their ability -- our system is so confusing.
In Taiwan, which is a developed country, they don't have appointments. You just go. So, the idea that you make an appointment becomes a barrier, because it is an unfamiliar step in their health care.
So, those kinds of differences, I think, make a difference in ability to utilize our system, or lack thereof.
MS. BREEN: I had a different question. First, I wanted to thank you very much for clarifying the prevention model.
I thought that was very important for us to understand, that it is built into the Asian life style, it is not a high tech thing that comes and you get your screening. It is a very different concept. So, thanks for clarifying that.
I won't say much about it, but just to let you know, the National Cancer Institute is currently struggling with how to measure cancer incidence and mortality using the new 2000 census data and all the bridging issues.
I have been working on a background paper for health disparities, and we have changed that table several times as new data have come in and new techniques have been developed.
I think there are people you could talk to, if you would like to pursue this a little bit more at NCI, because it is not a done deal yet, by any means. They are still working on --
MS. KAGAWA-SINGER: Yes, I talked with Brenda and until we get the 2000 census straightened out -- maybe that would be another recommendation, is in the meantime, always put that caveat in when presenting anything on Asian Pacific Islander data.
MS. BREEN: That would probably make sense. As you know, and probably everyone in this room knows, the populations that are affected most by these movements around with the census data are Asian, Pacific Islanders, Native Americans, Alaska Natives. It is the smaller groups that it creates the biggest apparent change in rates.
So, it is extremely important. I know Brenda is very aware of that and very concerned about it.
MS. BREEN: She has been very supportive.
MS. KAGAWA-SINGER: I am simply delighted that you are talking with her about it.
MS. BREEN: I was interested, and I know you have got two of your data managers, your project managers, here from the new program, the PATH Study, in Los Angeles and Orange County.
I was wondering, it came up yesterday as well, the idea of using administrative data more, which I think is what you meant by the community based clinic, the utilization and outcome information.
I know NCI has had the experience of merging the SEER data with Medicare data, which is a very large administrative data source.
Typically, administrative data bases are not constructed for analysts, and don't necessarily ask the questions that analysts want answered.
I just wanted to know more about your experience with that, and how well it worked out, and sort of how you shaped the data as you needed to, or how you dealt with the costs of merging the data, using the data, a little bit more about your experience, because that might be helpful as a model for thinking about how to use this rich source of data.
It is not population based. I mean, it has a number of random statistical problems down the line, but nevertheless, it may be useful, because we certainly need at least some beginning data on these populations.
MS. KAGAWA-SINGER: On that, I would refer you to, I think, a paper that Jeff Caballero forwarded to the committee.
He is the executive director for APCHO in Oakland, and they have an actually funded project to try and have a common data base amongst their 15 clinics across the country.
Hawaii also has a common data base, but it is more, as you said, administrative and doesn't ask the health questions.
So, they are struggling also with how to incorporate some of their clinical information with the administrative data base. As far as answers, there aren't any yet. Those projects are actually currently going on.
As far as costs and things, we don't have administrative data. It is the populations that we are working with, the communities per se, at this point, and Jackie or Susan, do you want to add anything on that?
MS. BREEN: How about cost?
MS. TRAN: The cost is expensive for a variety of different reasons, from the labor intensiveness of the actual gathering of the data from the community members to the actual data analysis, as well as the cost of creating everything. It can be very simple.
Actually, a lot of the rich data that we have is very qualitative, and it comes in the stories that our community health workers tell us about, and isn't necessarily a survey based information questionnaire.
In taking that data and doing focus groups, and in doing other types of surveys, we are able to get the rich data that we get, but it is also very time intensive because of the translation process, for all of the communities that we work with, and then back translating.
So, it is a whole entire process, in developing the materials and creating the appropriate ways to ask the questions, and then taking that finally into English, to analyze that and to see what impact it has.
A lot of times, it is such small numbers that, like Dr. Kagawa-Singer mentioned, it isn't statistically significant, and then what to do with that data to find more data to support that kind of resource. It is possible. It is just quite an intensive process and it is very costly.
MS. BREEN: Can I just understand your process a little more? It kind of sounded like maybe you worked with the community workers to get some qualitative sense of what was going on in the community, and then did you develop a survey which you consequently or subsequently administered in the community?
MS. TRAN: Yes, we did focus groups and we spoke specifically with the community health workers and then, from that, developed a nice, short survey of 92 questions that was translated, which makes it even longer, to apply within the communities.
Most of our sample sizes are, a majority of them is 180 surveys, which is rather small, but suits the communities, and then the largest is the Hmong, the Vietnamese and Thai, which is 360 surveys.
So, that information then was taken and was inputted into SPSS in access data base form, to be analyzed by the evaluation team.
MS. KAGAWA-SINGER: It is actually double that with our seven groups, because we have a comparison community in Northern California of four of the groups.
MS. BREEN: Would it be possible for us to see a copy of that questionnaire?
MS. TRAN: Most definitely, I can have that sent via e mail. If you are interested in the language ones, we would have to send hard copies, but that is available.
MS. BREEN: I think we don't necessarily want copies of all the different languages now, but I think that if we were to do this in a cost effective way and in an efficient way, it really makes sense to start sharing these questionnaires and make people aware throughout the country that these questionnaires are available, they are available in various languages.
You, for example, might be interested in -- I don't know if these communities overlap with the communities in Orange County that you were talking about or any of the health clinics that you were talking about, but that kind of sharing and interchange would seem like it would be very rich and important and might help solve some of the data paucity problems that we have been hearing about so consistently in these populations.
MS. TRAN: We would be more than happy to share and we are actually working with the South Asian Network, and they have developed a survey as well, in five of the languages that they have referred to, to gather data in their communities.
So, collaboration amongst the small groups, you know, builds the number doing the good work that is going on in the communities.
MS. BREEN: I am glad to hear you are way ahead of the game.
MS. KAGAWA-SINGER: One of the things, just to add, so it is part of the record on the translation issue, it would be very easy just to sit down with bilingual folks and translate it.
What we also have is the interpretation, to make sure it is appropriate, to make sure it is worded in a way that is respectful.
The other is, then, we had to make sure that we had comparability amongst the seven different groups.
For example, some of the words didn't exist in a particular language. So, then they would translate it into something that was close but, since that word doesn't exist, then it would have to do.
Then they have to check with the other six to make sure that their translation, when it is back translated, actually has a similar enough meaning that the question is going to be equivalent.
MS. BREEN: Actually, that leads right into my next question, which was the process that you had for translating the same survey, or a comparable survey, into all these different languages.
You had recommended use of community groups with language capacity for more sophisticated sampling procedures in high concentration areas.
I think you also referred to translation as well, as part of that. Anyway, could we hear more about how you did the translation? Ninez has talked about the translation process with the CHIS, for example.
MS. KAGAWA-SINGER: Probably quite similar to Ninez' because I worked on that committee as well, but the process often doesn't get into the cost and the time line for most studies. So, they end up truncated considerably.
When it is done correctly, just to do it in one language, the Seattle ANCART group did it in Cambodian, and it took them eight months, with a team of six, working full time.
MS. BREEN: Is it more cost effective to do it simultaneously, to do multiple languages simultaneously?
MS. KAGAWA-SINGER: More cost effective? Well, in a way, because you want to make sure that everybody is talking to each other, and there are two other individuals here from the Chamorro group, who participated in that as well.
I think it helps to hear everybody else's reactions to the questions. Whether it is cost effective, that I can't answer. I know it is effective. I don't know about the cost part.
MS. BREEN: I was just thinking that otherwise you would have to do it again and start at the beginning again, and start at the beginning again. This way, there would be an interchange right up front.
MS. KAGAWA-SINGER: I think the interchange is extremely helpful. Just like a focus group, it produces different interactions than a one-to-one interview will, the same in the translation process.
We know, for example, in doing it in Spanish as well, even though there is only one language, there are so many different dialects, and some words in one would be the appropriate one, and it turns out to be quite insulting in another one, the same word.
That is the process I think we have to do in any of the languages, to make sure that the interpretation is correct.
MS. MAYS: Let me just check and see if there are questions -- if there are questions in the audience, please come to the mike, because we have one more presenter that we want to make sure that we have in.
MS. THEA: My name is Jo Thea(?), again, and I am from the South Asia Network. I was wondering if the scale that you have to measure acculturation assesses for socioeconomic status, gender as well as sexual orientation?
MS. KAGAWA-SINGER: Yes, that is where I was saying that what would precede this is the usual demographic questions that we would ask.
MS. THEA: And you do also assess for sexual orientation?
MS. KAGAWA-SINGER: Yes, and you mentioned income on there. One of the things that we have tried to institute on ours is not income.
These are new immigrant populations and many of them, the income is going to be very misleading, because they send so much home, so much money home, that you need to ask more like, do you have enough money to pay for health care at the end of the month, or something like that, something that has more to do with a wealth indicator than income.
For many of these people, it is a downward mobility in coming to the United States. There is one gentleman that I met who works with the health department in San Jose.
He was a French literature professor in Vietnam, and actually now he is working on an assembly line in Silicon Valley. So, those are the kinds of disjointed information you get on a survey, unless you knew the community well enough to understand why that would be a correct answer.
MS. MAYS: Other questions in the audience? Okay. I will let you do the last one. You have something you wanted to say.
MS. BREEN: Well, I did. If this is off the wall, you can just tell me. I was reading something from the UCLA Center for Health Policy on food insecurity.
I was wondering if those questions are useful in these populations? I think you might be familiar with them. There is a battery of questions that USDA has come up with which are on the California health interview survey and are increasingly used, to see whether people go hungry.
It is just asked of people who are maybe within 250 percent of poverty, similar to the population that you are talking about, who are eligible for screening under the CDC program. Are those questions of use here in terms of getting at SES status?
MS. KAGAWA-SINGER: I will ask the community folks. They are much closer to it.
MS. GUENTHER: Ny name is Mae and I am with the Guam(?) Communication Network, just recently came on. So, I have been getting quite an education lately. In regard to your question as to food insecurities --
MS. BREEN: Yes, measurement of food insecurities with these questions.
MS. GUENTHER: In our community, and I have found since I have come to work with Guam Communication and we have other partners, in our community, our people won't necessarily answer that question, because they feel it is an invasion of their privacy. They don't necessarily -- pride has a lot to do with it.
I went to a seminar yesterday and somebody brought up something about Samoans and homeless. This was a person who works apparently with this community thing, but there was a Samoan next to her, who didn't cut her off. She gave her a chance to have her say, but she came on and made the point that in the Samoan community, in the Tongan and in the Chamorro community, and in a lot of the other communities, we don't have homeless people.
If someone needs a place to stay, we take them in. So, in regard to -- that is like I was saying with food. We also try to make sure we feed -- our community is our family.
So, depending on the kind of question you were asking, a lot of people feel that that is not something that they want to disclose because, again, if I was asking the question, sure, they would let me know because they know me, but if someone like you just came over and asked that, they would not answer that.
MS. BREEN: That confirms other things we have heard.
MS. KAGAWA-SINGER: One of the other items, I think especially for the Pacific Islander groups, is that there are often, for several of the populations, there are more of that population here on the mainland than there are back on the islands, and there is a lot of back and forth going as well.
That is one of the things I don't know if they have spoken about mortality data and some of the problems that we have, the salmon effect. Has that come up?
MR. HITCHCOCK: Yes, I know what you mean. I don't think it came up.
MR. LENGERICH: I wasn't here yesterday. I would be delighted to hear.
MS. KAGAWA-SINGER: It is just that our mortality data, for two reasons, may look low. One is that there are those elders who, when they get old enough or sick enough, they will go home to die. So, they don't show up in our mortality statistics here.
The other is one thing that I do want to say, is the error rate. Robert Han at CDC has done some studies looking at the accuracy of ethnic indicators.
For Asian American Pacific Islanders, there is like a 37 percent error rate between what the person says and what gets recorded.
In California, we know, for Native Americans, it is more like 80 percent, at least in the cancer registry, an error rate. So, that is one of the other issues that we have to deal with on the recordings.
Obviously, for mortality, it is often the funeral home director, and they don't really ask that carefully.
MS. BREEN: Thank you. Thank you very much.
MS. MAYS: Okay, let me thank you. Obviously, your presentation not only gave us information but, again, like the previous one, sparked a lot of discussion that is very useful.
Thank you for your patience with the committee in the sense that we are wanting to get it right in terms of our recommendations. That is why there are a lot of questions.
Okay, one thing that is also important for us to consider is the issue of policy. Our policy colleagues are quite often involved in advocating and pushing policies that surround issues of data collection on race and ethnicity.
We are very fortunate today to have Ignatius Bau with us. Some of you will know him from his work at the Forum before, and if you have been on the Forum's list serv, part of what you know is that he is on top of a lot of issues.
He is now with the California Endowment, which we are very happy to have him there, but I am happy to have him at the hearing. It is a real special treat in terms of, again, for us to be able to talk about the policy issues.
A lot of times, as soon as we talk about data collection, everybody is like, well the researchers are the only ones at the table.
I am a big believer that, you know, it is like we can do articles until we are blue in the face. We are not the ones that then go out and try to make a difference with them, except at conferences.
I wanted to make sure that we have people who have real strong policy backgrounds here. I appreciate, because I know you were in D.C. I appreciate that you were able to, before you have to go home, to actually come and spend some time with us. So, thank you very much and welcome.
Agenda Item: Presentation by Ignatius Bau.
MR. BAU: Thank you for the invitation. I am now a program officer at the California Endowment, and I just want to briefly say a few words.
The endowment is a private statewide foundation that is committed to expanding access to affordable quality health care for underserved individuals and communities, and to promote fundamental improvements in the health status of Californians.
The approach that we take is that of a multi-cultural approach that wants to make sure that individuals are served and communities are served, regardless of financial status, racial origin, cultural beliefs, gender, age, sexual orientation, geographic location, immigration status and physical and mental abilities.
Obviously, the kinds of issues that this subcommittee and committee is addressing in terms of Asian American, Native Hawaiian and Pacific Islander populations are ones that are very, very critical and important in the work that we do.
As Dr. Mays mentioned, prior to my being at the endowment, I worked at the Asian and Pacific Islander American Health Forum.
At the health forum, we were part of successful community advocacy to create a White House initiative on Asian Americans and Pacific Islanders in 1999.
I was honored to be asked by the President's Advisory Commission on Asian Americans and Pacific Islanders, which was created by that initiative, to be the lead author of their first report, which was released in January 2001, and I will talk a little bit about some of the findings from that report in my testimony.
Just to give you a little more background about myself as well, I have also served on the President's Advisory Council on HIV and AIDS, and on numerous advisory bodies for the U.S. Department of Health and Human Services. So, I am very familiar with some of the issues that I will be trying to highlight in my testimony.
Closer to home here in California, I have also had the privilege of serving on the Department of Health Services' task force on multicultural health, as well as on several technical advisory committees for the California Health Interview Survey.
So, let me return to the President's Advisory Commission on Asian Americans and Pacific Islanders. One of the things that they found was, they looked at the compliance with the 1997 Office of Management and Budget standards for the classification of race and ethnicity in federal data.
What they found was that, as of fall of the year 2000, only 12 of 32 federal departments and agencies actually collected aggregated or disaggregated data on Asian Americans and Pacific Islanders.
So, only 12 of 32 federal departments or agencies routinely collected data on Asian Americans and Pacific Islanders. Obviously, the Department of Health and Human Services is one of those departments.
Perhaps more disturbing is that, as of fall 2000, only 18 of the 32 departments and agencies -- this is across the federal government -- had actually implemented those 1997 standards and had a process in place.
While I don't have more updated information on that, the current White House initiative staff has actually collected more recent inventories and information from the 32 departments and agencies, but has not released that information yet to the public.
I would hazard to guess that those departments or agencies have not all come into compliance at this point. I think, as I will highlight later on in my testimony, I think even parts of the department of health and human services are having challenges reaching compliance as well.
However, even if we reached full compliance with the 1997 OMB standards, I believe that it would still be inadequate to meet the needs, and the health data needs in particular, of Asian American and Pacific Islander populations.
The President's Advisory Commission concluded that the specific needs of particular Asian American and Pacific Islander subgroups are even obscured with aggregation, and that the 1997 OMB standards should be strengthened to require additional disaggregation.
Right now, there are no uniform or comprehensive federal laws, regulations or policies that require that kind of disaggregation of Asian and Pacific Islander data.
However, I would suggest that one starting point that we could look to is the Healthy People 2010 initiative. What Healthy People 2010 did was, for the first time, followed the 1997 OMB standards, and disaggregates the available data for each of its 467 objectives by a separate Asian category that is distinct from a Native Hawaiian and other Pacific Islander category.
Moreover, what Healthy People 2010 does is, for each of those objectives, when data is not available, it specifies whether the data is either not collected, number one, or, number two, has been collected but has simply not been analyzed or, number three, has been collected and analyzed, but is not statistically reliable because it hasn't reached statistical significance or statistical power.
I believe that this actually presents a great template to look at the data needs and, obviously, to focus on where we might close some of the data gaps most easily.
Obviously, the places where data simply needs to be analyzed, where it is already collected, would be a good starting point, and certainly where data has been collected and has been analyzed, but is not statistically significant or reliable, may be good points to look at some of the sampling issues of aggregating multiple years of data, or using other sampling and analytical techniques to try to reach statistical significance.
I also think we have some examples in existing federal data sets that can also be good templates in how we can close some of these data gaps.
For example, the National Center for Health Statistics has routinely collected disaggregated data on Chinese, Filipino, Asian Indian, Japanese and Vietnamese populations.
However, the last time that they actually looked at that data by those disaggregated populations was in 1998, looking at 1992 to 1994 data.
Since that time, they have not had any systematic analysis of the disaggregated data that they already have in their current data sets.
Similarly, if you look at birth and death data, in 1984, there was the first study looking at Asian births, looking at disaggregated data among Chinese, Japanese, Hawaiian, Filipino and then a general other Asian and Pacific Islander category.
That was followed up by a more recent study in 1995, which looked at 1992 data, on those groups, plus additional other groups of Koreans, Samoans, Guamanians.
Again, since those two reports which were published in Monthly Vital Statistics, there has been no further analysis of the birth data that is available currently.
Similarly, in terms of death certificate data and mortality data, there was a report and analysis looking at 1992 mortality data, but there has been no effort since then to look at that data set.
Again, I think the fact that these prior studies and analyses have been done would obviously reinforce what you have heard throughout these days of testimony, that when you look at those disaggregated populations that oftentimes it is the Southeast Asian populations and Pacific Islander populations that have much more serious and worse health status that is often masked when you aggregate them with other populations like Japanese or Chinese populations.
Again, those would be good starting points, to use existing data sets. Oftentimes, the issue obviously resource allocation and prioritization of what kind of analysis gets done with those existing data sets.
Here in California we have similar challenges. The last time the California Department of Health Services published any major report or did any analysis of disaggregated data for Asian and Pacific Islander populations was in 1994 using 1990 vital statistics and census data.
Once again, here in California, what that report showed was that, for Southeast Asian and Pacific Islander groups, the first time they were sort of pulled out from the broader aggregated groups, they had much higher death rates and much more serious health issues than what might have been masked, again, by simply looking at the data in an aggregated manner.
Again, that hasn't been repeated with existing data that is available readily here in California since 1994 and, again, using 1990 data.
Fortunately, parts of the California Department of Health Services has been more responsive, and I wanted to highlight some of the work that the Office of AIDS here in California has done to consistently make disaggregated data by Asian and Pacific Islander populations available. It is collected routinely from local jurisdictions and then aggregated at the state level and reported out.
Unfortunately, though, what happens here is a disconnect between the state and the Centers for Disease Control. When that data is transmitted, usually electronically, to the Centers for Disease Control, CDC collapses all the data and loses all the subpopulation characteristics.
It is only now, I think, with an instruction that came out from the CDC in December of last year, in their rush to comply with the January 1, 2003 deadline for compliance with the OMB standards, that they are finally looking at ways in which they are going to change the Centers for Disease Control surveillance software to actually capture more detail and population specific data that has already routinely been collected here in the state of California and in other states like Hawaii, that had always been lost when they were transmitted to the federal government.
I also wanted to talk beyond morbidity and mortality data. You may or may not heard prior testimony about the importance of disaggregated data for other kinds of health policy planning and health services planning, specifically, when we are looking at participation, for example, in public health insurance programs.
A lot of the work that has been done down the street here by the UCLA center for research on health policy, has highlighted that when you disaggregate health insurance numbers, for example, for Asian and Pacific Islander populations, you can suddenly discover, for example, that Korean Americans have one of the highest rates of uninsurance among all racial and ethnic populations.
That, again, is masked if you only look at the aggregated insurance coverage rates for Asians and Pacific Islanders together.
Similarly, when you look at statistics -- again, we are going to be getting more and more of this kind of data from the California Health Interview Survey, of who has usual sources of care, who has not had regular doctor visits, who has had delays in treatment.
Again, when you look at the aggregated numbers, they don't look so bad, but when you disaggregate, again, Korean populations, other populations of Asian Americans and Pacific Islanders, you begin to see those differences emerge.
In the area of health work force, which is another use of, I think, this kind of data, we often look at, for example, physician population ratios.
Repeatedly, we are told that Asian Americans and Pacific Islanders, as a whole, are over-represented and shouldn't be considered minorities.
Certainly, the American Association of Medical Colleges does not consider Asian Americans or Pacific Islanders to be under-represented minorities and not included in their outreach programs to minority populations. Native Hawaiians are considered under-represented minorities.
Some analysis that my former colleagues at the Asian American and Pacific Islander health forum did of 1990 data in California and in certain other selected states, again, showed what we might intuit, which is, while there were significant proportions of Japanese, Chinese, Filipino and Asian Indians serving their populations, there really was a dearth of Southeast Asian physicians, Pacific Islander physicians here in this state and nationally.
Again, I think that kind of analysis needs to be repeated, given census 2000 data that will be coming out later on this summer, and really demonstrating not what the figures in terms of physician to population or nurse to population or any other health profession to population ratio might be for Pacific Islanders as a whole, but for those particular populations.
Finally, I know I was asked to address the upcoming initiative here in California, right now slated for the March 2004 ballot.
The initiative would prohibit the collection and use of any data regarding race, ethnicity, color or national origin by any state or local government agency, including public universities and colleges, like UCLA.
There are exemptions in the initiative for law enforcement purposes, as well as to comply with any federal laws, or to establish or maintain eligibility for federal programs or funding, as well as an exemption for medical research subjects and patients.
A field poll that was just released last month of likely voters here in California showed that voters favored the initiative 48 percent to 33 percent, with 19 percent undecided.
Those numbers were essentially unchanged from an earlier field poll conducted a year earlier in April 2000. The one interesting and important variable, though, is that only 11 percent of likely voters in April 2003 actually knew about the initiative, or were familiar with the initiative, prior to being polled about what their position might be.
Many health and other organizations have taken positions against the initiative, including the California Medical Association, the American Public Health Association, and the California Conference of Local Health Officers.
Most recently, the University of California Board of Regents also took a public position opposing the initiative.
In its resolution opposing the initiative, the California Medical Association had this to say. Data on race, ethnicity and national origin is necessary for tracking and preventing disease, planning for necessary services, and distribution of scarce resources.
Data on race help health officials tailor immunization screening, prenatal and other prevention services for areas in greatest need.
Without necessary data, research on the distribution and cause of disease will be negatively impacted. Without critical information on race and national origin, health planners and researchers will not be able to understand and eliminate differences in health among racial groups.
Having less information will result in health and prevention programs which are more costly and less effective.
Again, this is from the California Medical Association resolution opposing the initiative.
I believe that we need to continue to do some very careful both legal analysis and programmatic analysis, especially around the exemptions for this committee, and for all the federal programs and funding streams that might be impacted if the initiative passes.
Obviously, the implications for health research, health programs, health planning and health services are enormous if the initiative passes here in this state.
Let me say one final note, and I know that you have probably had other individuals talk about this issue. As we look at where we need to go in the future in terms of the Office of Management and Budget standards, not only the need for further disaggregation by specific populations, but also the difficult challenges posed by the multi-race response, as has probably been highlighted, especially for Native Hawaiians and Pacific Islanders here in this state, the number of persons who identified themselves as Native Hawaiian and Pacific Islanders are only 35 percent of those who identified themselves as either single race or multiple race Native Hawaiian or Pacific Islander.
Put another way, if you only looked at the single race responses in any particular data, you would be missing potentially 65 percent of folks who might identify as Native Hawaiian or Pacific Islander.
As difficult as the bridging issues are going to be, and as difficult as the methodology issues are going to be, and the analytical issues, I would certainly urge that we look at tackling those issues with the best of our thinking and our analytical and statistical power that we have, because there is very complex and rich data to be mined by those multiple responses.
Again, I believe it is not accurate to only look at the single race data. We need to be clear, whenever we are looking at data from here on out, from the census in 2000, whether or not people are giving us the single race responses, or whether they are giving us the multiple race responses, and even to give us the range between the single race and the upper bounds of the multiple race responses.
If health analysis, health data analysis and any resulting health planning and policies are to be truly responsive to the heterogeneity of the health status and the health needs of Asian American and Pacific Islander populations, then I believe some of the laws, regulations and policies that I have touched upon could be further changed and adapted and strengthened, could ensure the collection, analysis and reporting of disaggregated health data that benefits and truly meets the needs of these diverse populations. Thank you.
MS. MAYS: Thank you very much for a very good presentation. I will start with my colleagues. Questions?
MR. LENGERICH: Just a clarification. Back at the beginning you said that 18 out of the 32 departments or agencies were not collecting data on Asian Pacific Islanders; is that correct?
MR. BAU: It was that 18 of the 32 had not, as of fall of 2000, had not implemented the 1997 OMB guidance. Twelve of the 32, so whatever the math is, 20 departments actually did not collect any programmatic data on Asian Americans and Pacific Islanders.
MS. MAYS: I had a follow up to that. Did you indicate that some of those are in HHS?
MR. BAU: No, obviously HHS is one of the 32 departments and agencies that does routinely collect lots and lots of data on Asian Americans and Pacific Islanders. These included other departments. I don't specifically have a list of which they are.
MS. MAYS: Then let me ask it a different way. In terms of looking at HHS, is it your sense, from the work that was done in that report, that HHS is in compliance?
MR. BAU: Again, I think given the example that I gave regarding HIV and AIDS surveillance data, I think HHS is trying to come into compliance, but it is going through every single surveillance system, every single data collection system, every single survey, and I think -- I don't have the most recent information. Hopefully some of that information is contained in the inventory that is from HHS sitting at the White House initiative.
I think that there are going to be significant challenges in trying to reach compliance on every single data set.
MR. HITCHCOCK: January 2003, I guess, was the compliance date. I think most surveys that have gone out of the field and went back in compliant. I think we have probably some multi-year studies that may still be out there that may need to be brought into compliance when they go into the field again.
MR. BAU: Yes, and then I think the confluence of the fact that the census 2000 happened, that the kind of bridging challenges actually made it a lot more complicated for a lot of agencies to come into compliance because then they realize that they can have a stable denominator to be working with as well.
MS. MAYS: Let me follow up on something. Dr.Kagawa-Singer kind of brought it up a little bit, and you really have, I think, also now put it on our radar screen, and that is about the work force, and this whole issue of who is qualifying and not qualifying, I guess, for some of the programs.
Can you tell me if there are any -- that you know of, any further activities going on to explore this any further?
Can you tell me if there is any recommendation? I thought it was different than what I am hearing today. I am realizing that the ones that I am somewhat aware of must be sometimes the exception to the rules.
I know in psychology there was a big fight that took place to make sure that, in the training of psychologists -- they actually had to go and present data and all this other stuff.
I think in that tiny instance, that grew to be my universe, but obviously this must not be the case. I think it is important for the committee to have a sense of this and to get a sense of what kind of recommendations to make.
That is where we need to disaggregate, that it doesn't just say Asian Americans, but that we try to get in these training programs groups that don't have numbers in the work force. Could you discuss that a bit more?
MR. BAU: Sure. Let me start with a lot of minority, either training programs, educational programs, fellowship programs that then branch out and move on into minority research stipends and supplements, all the way to minority faculty, fellowship programs and other support for junior faculty all the way through senior faculty.
In all of those programs, sometimes the definition of who is a minority who is eligible is in the statute. Sometimes it is in practice. Sometimes nobody knows where the definition came from.
So, there is no single statute, definition, across the federal government or across the Department of Health and Human Services, for that matter, or across the National Institute of Health, for example, that is consistently applied.
So, part of, I think, unraveling this question is, should there be a uniform definition. The approach that the American Association of Medical Colleges is now considering is revising their definition of who an underrepresented minority is rather than just saying underrepresented minorities, which I think has both strengths and weaknesses.
One, it opens it up to groups to make the case with data, assuming that the data is available. So, you are, somewhat, in a catch 22 that, if the data were available, then it would be much easier to make the case to the AAMC that Pacific Islanders and Southeast Asians, for example, are under-represented, whereas we might not be able to make the case that Asian Indian physicians or Chinese American physicians are under-represented.
The down side of that is, that you then have to make the case in every instance. Are you going to have to make the case with every single medical school? Are you going to have to make the case with every single association that considers that question?
I think somewhere between imposing a single uniform definition across the board, as well as having the flexibility, again, to make the case because, again, given the change in demographics, certainly not a static issues.
Populations will become much more prevalent here in the United States and, as they emerge and as their needs emerge, we need to have that kind of flexibility as well, as well as recognizing the historically under-represented populations, especially the African American populations, as well.
I think there are difficult policy questions, but certainly starting from good data of where the sources of authority and definitions for a variety of programs and whether or not some of them at least should come into greater alignment, I think, would be a good starting point.
Then, to follow this discussion that currently AAMC is particularly having around medical school enrollment, which is obviously focused on physicians, and where that discussion goes, I think, is a fruitful conversation.
Obviously, the other political overlay on all of this is what happens with the Supreme Court decision in the University of Michigan affirmative action case, in which case race and ethnicity may or may not be more explicit of a factor in terms of admission policies, as well as the administration of many of these kinds of programs, even by HHS.
MS. MAYS: Do you know if this is on the agenda, for example, of the President's group?
MR. BAU: It is very much on the agenda. I am glad to say one of the meetings I was in, in Washington, D.C. last week, was a meeting of the Federation of the Associations of the Schools of the Health Professions, which is not only the AAMC, but the nursing schools, the pharmacy schools, the physician assistant schools.
They are very much interested in watching what happens with the Supreme Court case, as well as continuing their collective commitment to a diverse work force, and strategies of potentially collaborating more with each other on how to support a diverse work force.
MS. MAYS: Okay, thank you very much. Now we ask the audience. We open this up. Everybody is a participant. Other questions, comments from those i the audience?
MS. KAGAWA-SINGER: I wondered if you had any further information on other organizations that are discussing the initiative coming up, and what the ramifications would be?
That may be data on housing, on bank loans, on many other kinds of data bases that we, in health, are interested in, in looking at contextual issues for particular populations. So, how might that be addressed?
MR. BAU: As of now, I think there are beginning to be, for example, local governments that are looking at what their public position is going to be on the initiative, and I think certainly in each of the sectors, whether it is school districts and education institutions, or those interested in education or, as you mentioned, in housing, and community and economic development, those sectors are all looking at the initiative and its implications.
I think sometimes the connection, especially regarding the exemptions, are less clear because of the mix of federal and state funding for a lot of those programs, whereas a lot of the health programs are driven by HHS priorities and HHS programs.
Even though they come through the state, they are often, if you look behind them, are coming from the federal government.
So, I think other sectors are engaging in the issue and obviously March 2004 still seems a long time away for a lot of folks.
MS. MAYS: Any other questions or comments? Please, come to the mike.
MR. CHOW: Danny Chow(?) with the Asian Pacific American Legal Center. I have a related question about the medical exemption.
It is not really defined in the initiative, and I was wondering if there was any kind of assessment as to what exactly that means.
Some people are taking it to mean we are talking about the more formal medical research with experimental designs. Proponents of the initiative would say, this is something that applies across the board.
I am just wondering what the status is in terms of interpretation of that particular exemption.
MR. BAU: I think different people will have different interpretations and will continue to do so, and that that is not going to be resolved, unless the initiative actually passes, and then it will be subject to legal challenge, to try to test what the extent of the scope of those kinds of exceptions might be.
MS. MAYS: Do we have any other questions or comments? Okay, thank you very much. Your presentation has been very insightful.
I think that it has put something on our agenda that we have not actually thought about. So, we are very appreciative of that.
I want to say thank you very much for taking the time. We want applause for everybody. So, let us thank all of our speakers this morning for a wonderful morning that we have had.
Okay, let me just make a comment,how to tell you to get to lunch. Unfortunately, because we are really having a committee meeting, we can't feed you because, as you know, as a person of color, I would not have people coming and not feeding you.
So, we all know how to act right in terms of our culture, but this is one of those federal things where I can't feed you and we can't feed you.
I can tell you, on behalf of UCLA, where you can get food, which is right across the way in what is known as Kirkoff. It is our eating facility. Ackerman Union is kind of the name. [Luncheon discussed.] We will reconvene at 1:30.
[Whereupon, at 12:26 p.m., the meeting was recessed, to reconvene at 1:30 p.m., that same day.]
A F T E R N O O N S E S S I O N (1:37 p.m.)
MS. MAYS: We are going to reconvene again this afternoon. I want to welcome those of you who are just joining us. What I would like to do is to be able to introduce those who are just joining us.
MS. POUESI: Jane Pouesi.
MS. MAYS: Could you say where you are from, just so everybody knows?
MS. POUESI: I am with the Office of Solomon Affairs.
MS. LUCE: Pat Luce. I am with the Pacific Island Council of Leaders.
MR. KERMOTO: I am Ford Kermoto(?) and I wear several hats. One of the hats is the National Asian and Pacific American Families Against Substance Abuse, and another hat is with Magna System.
MS. KERMOTO: Frances Kermoto with Magna Systems.
MR. DAVIS: Good afternoon, everybody. I am Brad Davis, your audio visual tech for UCLA.
MS. MAYS: Okay, today has been a day in which, for those of you who are just joining us and those of you who have been here earlier, as you know, today has been a day when we have tried to spend some time looking at those populations in particular that don't have data.
I mean, for some populations, we sit and try to talk about, in terms of the huge samples, sampling and what the issues are.
Today, part of what we have heard is more about the fact of not having data, and what not having data leads to in terms of difficulties with ensuring a healthy population.
So, it is within that context that we welcome our next group of individuals who are going to be speaking with us.
Some of them you have heard from this morning. I feel like we have kind of started already, which is good. Mae Cruz Guenther is a nurse, and she has recently begun working with the Guam Communications Network. She is going to talk a bit about experiences for the Chamorro.
June Cruz Milligan, who is also with Mae, is going to also be talking about some of these issues.
We are also expecting a couple of other people. So, as they come in, don't be surprised if they just join you at the table.
So, first, on behalf of -- I get to do this because we are here -- on behalf of UCLA, I welcome you and then secondly, on behalf of the Subcommittee on Populations of the National Committee on Vital and Health Statistics, we are very pleased that you have taken your time to be with us today. So, welcome, and whoever wants to start.
Agenda Item: Remarks by Mae Cruz Guenther.
MS. GUENTHER: I will give you a little history on Guam and the people from Guam. It will kind of help you understand a little bit more why we are at the point of where we are, and why there is little or no data in regard to our specific needs, in regard to health and insurance.
Guam is located in the Pacific Islands. It is part of Micronesia -- no, wait a minute, Marinas Islands.
Guam is the largest island. It is a U.S. trust territory. The other three islands are Saipan, Tinian and Rhoda, which are commonwealths.
MS. MAYS: Can we ask you, because I think it would actually be helpful for us, can you tell us what it means to be a commonwealth and to be a U.S. trust island?
MS. GUENTHER: I have no idea.
MS. MAYS: We will ask that also of everyone.
MS. GUENTHER: I just know that, because Guam was a strategic military installation during the war, that is how we came about to become a U.S. trust territory. The people after the war were naturalized citizens, to that point.
Anyway, the original Chamorros were known as Totomonas. Then the Spanish came and took over and intermarried, and the Spanish and the local island language was combined.
Then the Americans came and took over Guam. Then we had Spanish, Chamorro, and then we learned English. Then we had the advent of World War II, where we were overtaken by the Japanese and Japanese was added to our language skills, and Chamorro was submersed and English wasn't spoken. It was Japanese.
Then the Americans came back and took us over again and, once again, English became the language. There was a law passed that we were not allowed to speak Chamorro, and that law is still on the books, as far as I know. It has never been taken off, but we speak Chamorro. We don't teach it in the school system.
The majority of the Chamorros, at that time, joined the service. At that time, they were not citizens. So, the Filipinos and the Chamorros that joined the service were only allowed to become either bosun's mates or stewards.
After the war, then they became naturalized citizens. So, the concentration of Chamorros in California is the largest all over.
After the last 2000 census, it was noted that there was a Chamorro in every state in the union. I think there was one in New Hampshire, but we had a Chamorro in every state of the union.
Considering our population, we had the highest concentration in California, and in San Diego County, there are over 10,000 Chamorros.
Now, you wonder how come there has never been any data? Well, we have been assimilated. Our people, even though they maintain their traditions, we have assimilated into the American culture, almost too well.
I guess the thing -- I can use my history. We will go for that. That is a lot easier for me. Being raised -- both my parents are Chamorro, so I am Chamorro. Because my dad was in the service, and his station was in the United States, they did not want it to be a barrier for us.
They felt at that time, if we were to try to learn Chamorro and English, that it would slow us down and cause problems for us, to fit into the system.
So, we were raised speaking English, even though our parents, we still did a lot of Chamorro traditions. Up until I got older, until I got married, I never really questioned that I was on my own little Chamorro way, because I had no problems going to school. I fit in with everybody and I didn't think there were any problems.
When, however, the census came about, when I became aware of the census, it struck me as funny because I always had to put down other.
For years I was other, until the last few years, they added Pacific Islander, and I thought, oh, okay, they are getting close.
Then the last couple of years they actually put in Guamanian or Chamorro. I thought, dang, I finally made it.
My husband, who is Hali(?), he is the one who, when the census was coming out, he said, honey -- because we have three children -- he said, honey, you put down the kids as Chamorro.
He said, there are lots of us white guys around. He says, but you Chamorros aren't going to be counted if you don't put it down and the only way you guys are going to get noticed is if you put down on the census that you are chamorro.
At that time, they didn't give you choices to put down whether you were half and half. So, my family, under Guenther, was Chamorro.
Still, I didn't really think there was a problem until I went to nursing school. I was the only Chamorro student, of Chamorro descent.
My dad, who had been diabetic for years, but I never really questioned any problem with his diabetes -- because, in the navy, when he came in, he was a chief steward. He was a cook.
He knew about food. So, he could take his knowledge of the food and convert it. Even though he was able to eat his own foods, he knew how to portion, he knew what he needed to do.
When I was diagnosed with diabetes, I went to the diabetes class and I thought, this is really neat and this is really interesting, but they don't have my food down here.
They are not addressing -- they weren't addressing my needs. I had to try to kind of figure it out and I later realized that I went the way that most Chamorros do, yeah, yeah, yeah, that is fine, and did whatever it is that I thought I was going to do anyway.
So, I had a really hard time. Then, working as an RN, I worked at night. There is nothing written for diabetics who work nights, much less a diabetic who is a Chamorro who works nights.
Diabetics are supposed to sleep during the night and work during the day. Again, I thought, wow, isn't this interesting.
Again, I went on my merry little way, not really thinking of the impact until my data became really ill, and then I became really ill.
I think one of the reasons I became really ill was I had a hard time with my life style. I was living the American dream and still trying to be Chamorro, and it didn't work.
I was trying to be super mom. There is no such thing as super mom. You have systems break down.
Anyway, eventually for my diabetes, I developed heart problems. My dad, who has been going to his doctor, his doctor mentioned, you have bad genes. I thought, why does everybody tell us we have bad genes. They don't really know our genetic make up. We are Chamorros, but the genes don't really have anything to do with it. It is our life style.
We are just told, you need to make all these changes, and it is hard to tell someone to make changes and expect them to do it, when they don't really understand what changes they have to make.
Most of our people in the Chamorro culture, they all have insurance. They go to the doctors, but they don't let the doctors know that they have problems with anything.
They agree with the doctors. They take any medications the doctors give them, and then they go home and do whatever it is they figure is best for them.
We have never really had data. Nobody has ever come up and asked me, well, Mae, you are Chamorro. What do you think about how it impacts.
This is the first time that I have ever heard about data being collected for a population of minorities. The only time I was never considered a minority -- that was according to my father -- was when he was working at Cal State Long Beach.
My husband went to get a job and my husband couldn't get in because my dad said he was not a minority. He made the point that at Cal State Long Beach at that time, which is over 20-some years ago, my husband was a minority, because Cal State Long Beach mostly employed, in the custodial and all that, Chamorros. That was the one time weren't a minority.
Any other time we were invisible. We have assimilated into the American culture and we have just kind of tried to survive.
One of the scary things that I have noticed is diabetes and cardiovascular is rampant in our race. It wasn't that before, years before, but our life styles have caused all these problems that we have, and we have never -- there have never really been any programs to help us correct those.
There has never been any education or awareness made that we, as Chamorros, as Pacific Islanders, we need to take our life styles and change them.
It has never been explained in a way that we can understand, especially our older people, and it is carried down to our younger generations, in that they have been so well assimilated the problems that they have they have never really questioned.
I think you need to ask me some questions, because I am not sure I said everything I was supposed to.
MS. MAYS: There is one more thing you can talk about, the food pyramid, but we will let you and then I want to have you comment about the food pyramid again.
MS. MILLIGAN: I think getting back, and backing up what -- we are sisters, we both have the same middle name, Cruz -- you know, going back and following the issues that we have been, I guess, an invisible race.
We are just now, both of us have just -- we have been active within our community as far as our social, and coming together and trying to maintain, and it is just recently she has taken on an RN profession.
She noticed a lot more of the medical urgencies that our community needs. I was more on the social and I was helping in other ways, and it wasn't until I joined the Guam Communication Network and getting involved with the Reach 2010, and the PATH project, which deals with breast and cervical cancer, that I took a step up, in trying to bring more awareness to my community, to my fellow Chamorro people.
It was interesting because we are educated, we have got a lot of western influence with us. At the same time, there is a lot of culture, our Chamorro culture, that we do maintain.
We know where we are from and we know how to prepare different foods, and the social activity that we have together is very strong, but the health issues are not addressed, and we are not quite sure how to address it.
I have been working with trying to get the knowledge and working with the BCRP with the northern and southern parts of California, and trying to collect that data hasn't been done, I should say.
So, trying to do it within our community has been very difficult, because what is it for. Why do we need this stuff.
Yes, they do us the same way as the western medical thing, and it was very difficult to break up the social atmosphere that we have and then trying to become the educators or just bringing more awareness and outreach within our community.
Through the help of Reach 2010 and PATH, we have been trying to develop, and it is a slow process, but there is so much other areas that we need to address.
One of the parts that we would need to address is, we have a lot of Guam referral patients coming from Guam, and they are citizens.
The problem that we are having with them is that they are being air vacced from Guam because, first of all, they do not have the medical facility or the capability to help the people on the island.
Then they come over here to the States and their referred to, depending on the area and the illness, to Good Samaritan out here in Los Angeles, Anaheim Memorial out in Orange County, and Loma Linda. Those are just three of them. If you happen to be in the military, you can go down to Balboa, down toward your San Diego area.
The problem that we are having is that they are coming out here. These people have been, again, assimilated with the western, but trying to maintain their culture and blending in with the western, and we are colliding. Our culture, our eating habits, are colliding drastically.
We are having a lot of health issues and we don't know how to address them. No one knows about our community. Nobody knows about our group because there is no data.
Why is there no data? We have been either -- like my sister has been saying, it is either Asian or Pacific Islander, depending upon which one you feel like.
Well, let me see here, well, I think I will go Asian this time and then, the next time I will fill it out, I will put it down in Pacific Islander. If there is an other, then I can write it in, but who takes the time to read what that other is?
I don't think so. I don't think, unless it is printed out and everything is computer, you shove it in -- they don't take that time. It is like the Florida thing, that little thing. Nobody pays attention to it.
Nobody has paid attention to us, and we are here because we feel the importance. We are active within a lot of our communities, that we do have little pockets where there is community. There is social activity, and that is how we stay together with figuring out what is going on.
Back east, Hawaii, California, all over, wherever there are a little bit of Chamorros, we seek each other out. That is how we keep together, you know.
We try to -- if somebody is sick, then there is this hot line that goes out and we try to help each other. Sometimes we are not able to. Sometimes we don't have the facilities that we can.
For example, like our referral patients that are coming out here that have a lot of needs and they aren't able to be addressed.
We have people who are stranded out here, it seems like. They are medical referral patients. Just the breakdown between the medical referral doctors back in Guam and out here in the States has been so broken down that they are coming out here for -- being diagnosed back in Guam for one illness.
They are coming out here to the States and they have a second opinion and they don't have that problem. They have got a worse problem.
A prime example was a woman who came out here for, what was it -- the one we were talking about -- she was not diagnosed. She said that they didn't have cancer back in Guam.
She came here to the States, and she has cancer. . She has had cancer for a while and nobody realized it. Nobody noticed it. It did not show up back on Guam.
It is not like we are -- we are not -- we are part of the system. We just have no idea what part of the system we are.
I think a lot of trying to educate our people and trying to get the myths broken down, again, this is dealing with the cancer.
One of our Chamorro community members passed away and she had breast cancer. She had a lump. She was semi-aware of self breast exam, going through, but what she chose to do -- and this woman was semi-educated, but what happened was, she has insurance, but instead of going through the western medical doctors, she chose to go to our Sarana(?), which is our medicine doctors that treat with herbs and other ways of healings.
She kept going back and forth from Guam to visit her medicine doctors. Unfortunately, when it was diagnosed, she passed away two weeks later, because she chose to ignore the systems.
It is like that, and it was a coming together as a community and us outreaching and just saying, this is a sign. Something is wrong. Yes, some of our herbs work, but where is that fine line? We need more education. We need more awareness.
MS. MAYS: I am going to ask you to just give me the example about the food pyramid but, as we do that, I am going to ask Salla if she will actually come up and join us. So, as she gets your name tag and you join us at the table, she is going to tell us, there was a story about the food pyramid that I wanted her to share with people.
MS. GUENTHER: Yes, part of Guam Communications, they are a multi-service organization and it is all through grant funding.
They are actually the first organization that is Chamorro based that is actually trying to outreach to the people.
One of their programs is called HOPIS and the other one is called Cares. In HOPIS, the director is Dr.Eileen Moon, who is out of UCLA, and HOPIS is a program that is lasting -- we have got funding from the CDC and is lasting until 2007.
The first part of HOPIS is immunization and the second part is coming up, it is going to be diabetes, and the third cardiovascular.
In the diabetes phase, what our biggest problem was, was that, again, we have the food pyramid as presented by the American Diabetes Association, but we needed to modify it to fit each of the communities that is in HOPIS.
The Samoan Nurses Association has this food pyramid. They took this food pyramid and they converted it for the Samoan people. It is really neat, but they are the only ones that have it. The Filipinos don't have one, the Tongans don't have one, the Cambodians and Laotians, they don't have one.
Part of HOPIS is also they are doing surveys. This is the first time where I feel that they were actually trying to reach out and find out how many Chamorros, how many Tongans, how many Samoans are we reaching out in regard to awareness and education, in regard to immunization, diabetes and cardiovascular.
This is the first program that I have heard of where we are actually trying to get counted for something, but that is one of the barriers that we have, besides the fact that our people -- you have to be accepted by your people before you can conduct any of these things.
Because of my parents and the involvement I have had in my Chamorro community, and because I am a nurse, that goes a long way in acceptance for the people for me.
The fact that I don't speak the language is a barrier in my case, but I make sure that I take somebody with me who speaks the language. Then, again, we have that interpretation, the problem with interpretation.
Margie made some outstanding points, and a lot of our people, even though they speak the language, they don't necessarily read it and, in reading it, it is a matter of interpreting, what is that that is written, and what are we saying and how are they interpreting it.
In our immunization survey, in fact, we have one in language, in Chamorro, and we have one in English. I, of course, because I don't speak the language, I am using the one in English.
Well, I thought, oh, we have got somebody to help me who speaks Chamorro, Joe. Joe is reading the Chamorro version and he is going, this isn't right. This doesn't match the English.
So, now what he is doing in the survey is, he is taking the English version and reading it in Chamorro and people are going, oh, that is what you mean, but they have a lot of complaints, in that they feel, why are you asking all these questions. Why do you need to know this. What difference is it going to make to us, to me or to my family.
We really need more data in regard to not just Pacific Islanders, but each little specific group under there.
MS. MAYS: I thought that would be a nice welcome. I knew when she told the food pyramid story, that she was actually going to talk about it relative to the Samoan Nurses Association. So, I thought that would be a nice welcome to you, to the table.
Salla Mataalii is with the Samoan Nurses Associations. So, welcome, and please share with us your comments.
Agenda Item: Remarks by Salla Mataalii.
MS. MATAALII: I would like to ask June Pouesi if she can join us here, because she is very -- she has been a part of our community, and they have supported our community for quite some time. She is here, and I didn't think I was going to make it here, but I tried my best to be here. So, I ask June if she can join with us.
My name is Salla Mataalii. I am the chairman and the president of Samoan National Nurses Association. I just want to share a minute or two about our organization.
We have been around since 1996. We actually established the organization in 1996. We didn't really do anything until 1998, and from 1998 until now, we have been outreaching our community.
If I may share this story with you, how I started out, I have been here in California, lived in Southern California, for 29 years.
I have been educated here. I graduated from UCLA. I have been a nurse for 28, 29 years. It was very difficult to put together an organization.
As you know, in our Samoan community, we have very few organizations that are serving our community. One example is the Office of Samoan Affairs. They have been around for quite some time. So, we had some more federation. The only other is the Samoan Nurses Association.
When we started out, it was very difficult. My introduction to this whole thing was through one of the very good friends of mine who is from the Chamorro community, Lola Saplan Santos(?).
I remember when I first met her. She was telling me what she was doing for her community. I asked her, you know, I have been trying to do something for our community. I have helped a lot of our Samoan community through the hospitals, coming in as an interpreter, as someone who is helping them medically.
So, I started hanging around with her. I attended a conference with her. She helped pay some of my fares to go with her, and from there, I learned. I picked up a lot from her, from just attending conferences.
I started to organize this nurses association. I remember the first amount of money that we had was given to us as a subcontractor, through the Chamorro, the Guam Community Network, was $600.
We went to the community. I get very emotional when I share this story, because the $600 went a long way for me and my nurses.
We went to four different churches. We helped them show how to do breast self examination. We educated them about breast cancer. We are trying to get free mammography programs for them.
Through that, the $600, we found four women total with abnormal mammograms, and we were able to help them. Three of them survive today. One passed away. From then on, I started networking with other organizations.
Right now, we are a 501(c)(3) organization. It is a non-profit. We have worked with Margie Kagawa-Singer for the last three or four years.
We have outreached our community. We have gone out. We had a health fair that we provided free mammograms. We have had some programs to work together with the Office of Samoan Affairs, to outreach our community on cervical and breast cancers.
It has been a long way for us. I think what they have shared with you are very similar problems to the ones that we have in our community.
We have no data. Of course, our communities are very small in numbers. Therefore, it is very difficult for us to get funding.
For my organization alone, we have tried. For so many years, funding was given out as Asian Pacific Islanders. We finally have our own category, as Native Hawaiians and Pacific Islanders.
It is mandated by law that we must be recognized. I really feel that data should be collected on Native Hawaiians and Pacific Islanders, so that something can be done for our community.
We share the same problems. The Chamorro, the Tongan, the Samoans, the Hawaiians. We have the same problem. We have no data to base anything.
The small data that we have, it is either very limited, the number of people who have this data. I just completed two years with the Little Company of Mary Hospital.
We were funded for a diabetes project. I was the RN manager. I worked with the only Samoan doctor in Southern California, and he is on the staff at Little Company of Mary.
We have outreached 33 churches from Orange County to the Valley to the South Bay area. We have collected data. They are working on those data. They should be coming out. Little Company of Mary and some of the people that worked with putting the data together with Dr. Mao(?).
It was very difficult to outreach the community. There is lack of awareness of diabetes in the community, and it is one of the predominant diseases affecting our community.
Nutrition, obesity, to weight problem to diabetes, to high blood pressure, high cholesterol, stroke, heart diseases, these are all diseases that, when I grew up in Samoa, even coming here for the first time, you hardly heard of these things affecting our community. Now, it is like one member of every family that I know is affected by high blood pressure or diabetes.
Through this program, we outreach our community. We have gone out to our community with health education classes.
I have taught with Dr. Mao the nutrition part of the program, the education about diabetes, how to maintain your blood pressure, how to maintain your blood sugar level. I mean, we have gone out to the communities and done this.
We have seen the tremendous changes in our community. Some of them never knew anything about diabetes, or were afraid to go to the doctor because they had no insurance.
This program was able to help us, to provide care, to provide treatment for some of them who have no insurance, and that is one of the biggest problems that we have, an uninsured population.
So many of them, they are afraid to see the doctor. They don't know what to say. They don't understand the language. They depend on their grandchildren and the children to take them to the hospital.
We don't have any materials that are translated in the Samoan language, let alone a lot of Pacific Islanders languages, to help our community.
These are the things that we are trying to help our community. Earlier I mentioned that we have been working with Dr. Margie Kagawa-Singer, and we have done -- I mean, I am so grateful.
I am very grateful for Dr. Solon Park(?) and Margie for their help with us in our fight to help our community of women on breast cancer and cervical cancer. June, let me ask you to step up here.
MS. POUESI: June Pouesi, American Samoan, and with the Office of Samoan Affairs. It just makes me very proud to see my Chamorro sisters here and Salla.
It was from the Chamorro group that we found out about this hearing. It was from Lola, and I want to thank Lola for that.
Again, I am going to reiterate what Salla has stated. There is a federal mandated category called NHOPI, Native Hawaiian and other Pacific Islanders.
Continuously, I am seeing AAPI. There is no such group at this point in time. We will be moving at the national level.
I would hope that this hearing here would allow for that message to come from below going up, where we will be coming from the top going down.
It is critical for us to have our own category for data, and the history of that is that, in 1995, when OMB opened up hearings to deal with the race categories, Pacific Islanders had gotten together from the national level and including also Hawaii.
I mean, including Salla Mataalii, Segundo Bingo(?) from the Chamorro group and some of the Hawaiian groups -- Page Barber, there were several of us had been involved in it.
The whole purpose that we have heard from our community is, we are invisible. We were invisible in the Asian Pacific Islander category.
We had moved to separate us, to allow us, basically for what you are doing here, data collection. Data collection.
Please do not go backwards on this. There is no issue about this AAPI. The federal government has made the decision. The question is, as of January 2003, the federal government was mandated to put that into place.
We have found that that has not taken place, and we are appalled by that. Even the fact that we are coming here, you have combined the group together, but it would have been nice if you had Asian one day, Pacific Islander one day, get the community out here and talk.
If that is what you want to know about us, let us talk. Let us tell you what is happening in the grass roots, and then teach us.
We work with our counterparts on the Asian side to learn about stats and so forth, if that is necessary. Like the group that Salla is talking about, they are beginning to learn. They are working, along with GMC, with SSG, that has provided good training for them.
You know, we can't do everything, but I am saying to you, give us the decency of being who we are, because I will tell you one thing. If you combined two of the other categories together, if it was the African American and the Asian together, no way we are going to allow this type of thing to go.
We have worked hard for this category. We want our own data and we want our own stats, and that is the message that I bring from the Pacific Islander community. Thank you.
MS. MAYS: What I would like to do at this point is, first of all, to say, for this committee, we are honored to have you here in terms of in order to receive your stories.
Our responsibility will be to try to be honorable in receiving those stories, to see what we can do with that. I do think we have an honorable committee. So, we will move ahead with that.
I would like to now open it up for questions from the panel, and then open it up to the audience. Questions here in terms of my colleagues?
MR. LENGERICH: Sure. I also want to express my thanks to you all for coming here to enlighten us, really. It is very enlightening for me. It is really helpful.
I want to pick up a little bit on the issue of Guam, and also a comment we heard earlier this morning and that is about the movement back and forth between California, the mainland, and Guam, then. How frequently does that happen for individuals?
You were talking about being diagnosed there and then coming over here for care.
MS. GUENTHER: That is just basically in reference to the Guam referrals. We have a large community who live here, who retired here, and the one thing -- June and I are representing actually Lola, and we are a very poor substitute for this woman who has done so much.
She is the reason I am here. She is amazing and she has been more like a one woman show who has really tried to get the Chamorro people together. I am just not as articulate.
MS. MAYS: I think everyone up here will tell you, you are doing fine, and we all acknowledge how much we are learning from you.
MS. GUENTHER: There is so much that is in my head that I can't get out. The Guam referrals that have been coming over, that is because in Guam the health system is almost nonexistent, and most of the -- from my understanding, there are over 100,000 people on the Island of Guam.
It is only 42 by 12 miles long but, of that 100,000 people, there is barely a third who are Chamorro. The majority of them have left, have gone off island.
Like I said, the highest concentration is here in California. My dad was transferred here in 1960. So, my family has been here since October of 1960, we have lived in California.
Salla was talking about how every family has at least one person that is diabetic. In our family of five, including my mom and dad, June and my mother are the only ones who don't have diabetes.
At this point in time, my other sister, my two brothers and my dad, who died eight years ago, we have diabetes.
Both of my parents had heart problem and had bypass surgery. I had a bypass surgery three years ago. I am diabetic. My two younger brothers have diabetes really bad.
The youngest boy, he had his first open heart surgery when he was 40. He had a five or six bypass. Diabetes, just within the community, within Los Angeles, Long Beach, San Diego area, it is like asking somebody if you have somebody in the service, diabetes and heart.
There is no data saying that. It is just that, by going out and just being in the community that this has all come up.
When I used to ask questions, you know, how come we are not -- how come nobody is taking care of this, why isn't this being addressed, am I the only one that sees that it is a problem, it is not so much that I am the only one but unfortunately, because of our assimilation into the American culture, most of our young people, when they become the doctor, the nurses, they are no longer Chamorro. So, they don't come back to the community to help with the awareness and the education.
Since meeting Lola, she has given me that passion, that I need to get out there and bring awareness to my people about my people's plight, about the Samoans, the Tongans.
When I first came to GCN, I was just supposed to be working with HOPIS. I love that group of people so much that, when they switched me to CARES -- well, they found out I was a nurse, so I also am resident nurse for GCN -- I went, okay, whatever -- but I just admire like the Samoan Nurses Association.
There are a lot of Chamorro nurses but can we make an association? No, not at this point in time.
MS. MATAALII: Believe me, it is not easy. It took me a year and a half, almost two years, just to call the nurses around.
Even when I put this organization together, there was a lot of saying, you are not getting nowhere. Like she said, to share the same problem, people have been here for long, there is very little that is done -- I am talking about medically, in the health field. Nothing has been done.
So, when they heard we were putting this together, it was very difficult just to make the people aware that we had an organization that we are coming out to help the community.
Back to when she is talking about diabetes, like I said earlier, it is the most predominant illness that is affecting our people.
It affects the heart, cholesterol, nutrition. You are not just tackling diabetes alone. You are going and teaching them about nutrition.
The young ones who are growing here in the United States, they love the fast food, but that is where we see a lot of our people are getting in trouble.
A lot of them are coming from back home which they didn't have the disease, and they are affected by diabetes over here.
With Dr. Mao, with the number of patients he has treated, this is the number one cause of death in his patient, are either stroke, heart disease or diabetes, so many of them are on dialysis.
They know so little about this is one of the causes of dialysis. You have diabetes, and they know so little about it.
So, you get people to try to put together and go out into the community, but making our community understand our concern and we are going out to help them, it is very, very difficult.
You know, we have so many other community organizations that are coming in, influx our community and say, we are here to serve your community.
It is very, very difficult for a non-Samoan to serve the community of Samoans. I am speaking for Samoans only.
Our people are very sensitive. If you don't trust them, they will not listen to you, they will not. It is very difficult to get them around.
So, if you have your own people to serve your own community, it is much easier, because people can understand the language, and they are comfortable with you.
MS. MAYS: Let me ask a question based on exactly what you are saying. One of the ways that some of the data is gotten is that somebody in another place will call a household.
When they call the household, they will talk to somebody in the household and they might ask you a few questions. Then, if you qualify, then they want to ask you a lot more questions.
So, the question I have is, for example, in your communities, if I called and I said, I am with the American Community Survey, and this is a survey designed to -- I have to make it up, I don't know all the words -- designed to find out a little bit about you and your family, would you participate?
MS. GUENTHER: No.
MS. MAYS: I have a follow up question, because I really wanted to ask you this. If I handed your kids a survey, what would your kids say they were?
Remember, you say your husband told you to count the kids, but this is just an issue of identify, to some extent, because you are talking about even in your own community, individuals who try to get them to work with you.
For some people, it is the assimilation. So, the other question is, we may be getting data -- I don't know this but I have to think about all the efforts that are going on, and I am really trying to figure it out.
If someone called some of the households that you know, what would people say they were?
MS. MATAALII: Our people get very suspicious, because there are so many surveys, there are so many -- different things are coming into the community and we are doing this, we are doing.
People are so afraid, there is so much suspicion, well, what is this for. When you call, you don't care who you talk to.
If you talk to somebody, a grandson or a granddaughter who understands English, yes, they may understand what you are saying, but telling it to the parents, to the uncles and aunts who hardly speak any English or don't understand English, they say, what are you talking about.
It takes trust for people to even, given all the information, like I said, they are so suspicious about giving our information.
With the census, we found this out with the census, because I know there are a lot of families that aren't counted for, a lot of them.
Sometimes they say, there are 13, 14, 15 people in one household. I know during the census time, we had the hardest time and I know they were helping with the census, too, going out to Samoan families.
Like I say, they always say, what is this, again, what is this for. It is making them understand the importance of what you are doing.
It is important for everybody to be accounted for, because this is the only way that they know how many Samoans are living here.
Again, we go back to going back and forth, the families, back and forth here. There is a lot of moving around in our community, staying with the uncles here, staying with the aunts here.
So, a lot of time they are either miscounting them at the census time. I know for a fact that a lot of families were not accounted for.
MS. GUENTHER: There is a big fear that even though it is supposedly anonymous and it is just a census, there is still the fear that, well, if I put this down, they are going to come back and get me, there is something going to happen.
MS. MAYS: What do they think will happen?
MS. GUENTHER: Chamorros are citizens, but for some reason they still have this fear that, if I put this information down, it is going to come back to bite me.
MS. MILLIGAN: I know, when we were trying to inform our community about the census coming up, after it was done, we worked really hard, okay, fill this out, make sure you fill out the census when the 2000 came out.
After the fact, we came back and we found out, just through casual conversation, that they filled out what they wanted to fill out on certain parts of it, and on certain parts of it -- like the income portion, why was that important?
Well, I didn't fill it out. Well, they were asking me this. I didn't fill that part out either. So, part of the data was collected, but it was incomplete. So, how much was that worth?
If the data is incomplete in one portion, does it hold weight for other portions as well?
MS. MATAALII: For their community, at least a lot of them are citizens. In our community, we have two Samoans. We have western Samoans and we have American Samoans.
American Samoans, we are nationals, U.S. nationals, and we have the freedom of going back and forth. We don't require visas and all.
Western Samoa, which makes up the biggest population of us Samoans out here, a lot of them are here no on visa. They came in a group and some of them stayed over. Some of them are here just like other aliens or non-residents. These make up the biggest part of our population here.
So, when we counted the census, we found it very difficult to account for because they are so afraid -- like they said, I am so afraid to put my name down because they are going to go to the immigration office. They are going to report me.
These are people we are finding that are so underserved. We have so much problem with them with the diabetes that we have just finished, the two years that we have done these diabetes studies, we have gone out to the communities, do blood culture, find out who is diabetic.
We find out from Dr. Mao that you are diabetic and you are not diabetic and controlled by diet or something like that.
We found out that a lot of them are diabetic, about half the people I work with, I go around and ask them, make them feel comfortable. Tell them we are not reporting anything to anybody. This is confidential. Then they start to come out, are you sure.
Every Sunday we have gone to different churches to tell them about the diabetes project, tell them what we are doing, what we are helping them, giving them treatment, and they say, are you sure.
This is the question, are you sure you are not going to report anybody. I say, we are not here to report anybody. We are not. We have nothing to do with immigration.
We do not care if you are here legally or illegally. What we care about is your health. We are concerned about you. And these are the people that we are having problems to reach out, the biggest population of Samoans.
MS. MAYS: Nancy, I know you have a question.
MS. BREEN: Yes, I don't know if you will be able to answer this question, Salla, but you mentioned that you had actually collected some data, it sounded like, through the church population that you and Dr. Mao had outreached into.
I wondered -- you said it is under analysis now. Is that something that --
MS. MATAALII: It should be really coming out. It is under Little Company of Mary Hospital. The funding was under them, and we have collected. We have gone out and screened over 1,000 people and break it down into diabetes and diabetic patients, and provided the care for them, free medications, four times the doctor would visit, get them medications.
At the same time, we have done the big studies. We had a big questionnaire survey and those are data that they are collecting and, from that diabetes project alone, we have collected a lot of data, and those are being analyzed right now. I was told it should be coming out soon.
MS. BREEN: Is that something you could make available to the committee, to at least provide some preliminary information on Samoans?
MS. MATAALII: That should be made available, because that will be very, very helpful.
MS. BREEN: Did we see data on the proportion of Samoans living in California? Do most Samoans who are not in Samoa live in California; do you know?
MS. MATAALII: The biggest population of Samoans outside Samoa is here in California, right here in California, besides Hawaii.
MS. BREEN: So, that would be a helpful sample, I think.
MS. MAYS: Thank you. What we are going to do is introduce two other speakers. The traffic today -- first of all, what I have to say is, their stories I know but I have to let people tell their own stories. I am learning about that.
Many of the people who are sitting here today with us really went out of their way to be here, so I really want to acknowledge that.
I mean, when I joked and teased about traffic, it is beyond just traffic. I think Dr. Kagawa-Singer was talking earlier about the fact that, you know, the community, people are very active.
What they try to do is make sure that when things happen that they are able to be there. and people have done that at personal sacrifice relative to things in their lives and things they have to take care of.
Some have even felt like, well, you know, they are not the speaker to be here, but I think from all of us sitting here, the people sitting here were the speakers, because it is very clear, in terms of the committee, that we are learning a tremendous amount.
I am just hoping that our ability will be to translate this into something that will be very useful. So, I also welcome you.
Again, you were here yesterday and I welcome you back today, and I really appreciate your also coming back to take the time to speak with us.
I don't know who wants to start first or how you want to do it.
Agenda Item: Remarks by Jane Pang.
MS. J. PANG: My name is Jane Carla Pang. I am a retired nurse from L.A. County with 37 years experience in what we call continuity of care, discharge planner.
I am also a retired case manager. So, I will speak for one entity regarding health disparities, and specific to the major categories of chronic disease, they are cancers, all sites, including breast cancer, cervical cancer, diabetes, heart disease, strokes, horrible strokes. I just got news last night that one of our members had a severe massive stroke.
I guess we are here to really -- we are the invisible community, the cell that is too small to be counted, the cell that needs to be over-sampled.
All of my sisters here, and cousins, are facing the same dilemma. We get our community out and those who participate in the census, we get our numbers in, but we sort of feel that it is sort of futile because, when you start adding up and analyzing it, we don't make the threshold.
Especially Native Hawaiians. We are so well disseminated throughout L.A. County and the nation, in every state including Alaska, but I am sure if you looked at one county or one city or maybe even one target zone area, that we still are below, because we are so disseminated.
We have a particular concern -- and you probably brought forth the issue of multi-race identification. I am Hawaii born. I am Chinese Japanese extraction, and this is my husband.
MR. V. PANG: I am a Native Hawaiian, and I also have Chinese extraction, but I am real proud of being a Native Hawaiian.
For the past almost 20 years I have bene working with other Pacific Islanders who have the same health disparities.
Some of them are even more so because they only understand one language, and that is their native language. So, a lot of times they depend on their children to tell them about the documents they are reading in English.
So, the child is describing it in childlike nouns and verbs, constructing the sentences. If you have a government document to read, it is very hard for even people with a college education to really read and comprehend and understanding.
Here you are having a child with maybe a fourth and sixth grade education to translate it. So, that was part of the dilemma when a lot of our enumerators, when they went out to the communities that only spoke mono-language, so their native language.
That was real hard and, like Salla was saying, the mistrust, because they may have 15 in the family, but yet, they remember signing a contract in the apartment code that says no more than three families, no more than two families, and here they have 15. So, they are very wary about that. So, they are always asking questions, what is this for.
I know the census people, they were real good in coming out, none of this information will be used against you and it is all confidential, but you know, they know this is the big government that has access to all the computers, and they are just wary about it.
Also, none of the data is shared back with the community. You may see all of the data appearing on the newspaper one day and you say, well, I thought the community was going to be first to get the data and chew on the data to see how it affects them.
We do not have any social services that advocate for Native Hawaiians or for other Pacific Islanders. If not, they are very few or nil.
In Hawaii, they are real good, in that they have one agency that takes care of all the Native Hawaiians, and that is good for them, but all the funding just goes to Hawaii.
For a lot of Pacific Islanders, like the Marshallese, all the funding goes back to the Marshall Islands. So, none of it gets here and they have a lot of needs up here in Arkansas.
During the census, they were approximately almost 10,000 of them in Springdale, Arkansas, and they wanted the census document translated.
So, we had to send some Marshallese that work on our council to go back there and to give them a workshop. They gladly went out, but it was on our nickel, and we couldn't find any funding so we said, well, we had to do this.
So, we sent them to Arkansas. We also sent them to the state of Washington. Otherwise, they would be completely invisible, but these are real small cells. You are talking about 10,000 here, 6,000 in another area.
Hawaiians, there may be 40,000 in one particular area that comprises three or four counties, and Samoans, they may be, on the paper, about 15,000 situated in three or four counties in the Southern California area.
So, you are talking about people who don't even make the threshold of what the census says, you know, we are going to sample in that area.
When you say, well, we would like to have over-sampling, they sort of say, well, that is not in the game plan right now, but we will take that under consideration.
MS. PANG: We would like to speak on behalf of the other communities. We speak on behalf of, as you well know, Polynesian, Micronesian, Melanesians.
Within the council, we were blessed with the initiation of the Office of Samoan Affairs and the 1980 census brought our community together. We knew not that we were even there.
We met each other and, as a result of that, we went on in 1991 and organized a formal group. It is just a volunteer coalition, absolutely not funded. It is all of us pulling together when we felt we needed to do something.
Until the government or other agencies realize we are there and can partner with us, we are missing the 32 year old who had multisite cancers, surgerized at L.A. County Medical Center, follow up care was given in Pasadena, California, which was about five to eight miles from L.A. County in Central L.A. The family resides in Costa Mesa, California, Orange County. I am a county employee, so I take some responsibility with that.
Two years later the father calls me, who is a deacon, the minister, for their church and says, my daughter is bleeding from a tumor on her neck. I said, well, she had an abdominal tumor. Now what is happening?
In the two years, she spouted two more tumors, was emergency admitted to Orange County, subsequently died two-and-a-half years later. It is cases like this ongoing.
They are Marshallese, they don't speak the native language. They must have an interpreter and, as of today, there is no health interpreter for them.
So, I am trying to organize, with the Marshallese community, and facilitate a language workshop in which they can be certified and trained through PALS, a Pacific Asian Language Services, to train them, so they can be certified in health.
Incidents go on and on. They are anecdotal. They don't have the funders with numbers, because we don't have the numbers, but I think there is a volume of individual calls we get.
Three generations of breast cancer in Native Hawaiians who, for some reason, despite our active campaign, get in too late and are devastated with metastasis and face a life term at 30 of five years or less. It goes on and on.
Vic is a cancer survivor, and this is why we took up the cause without any funding, because we felt that someone had to do it.
There are many grass roots organizations that we have networked who are doing it, because it has to be done. We can't wait.
I think the census came out this year saying that we were probably the youngest population in the United States. One has to wonder why. I know the reason why. We don't survive.
Until we address the small subpopulations, we are going to continue to be the youngest population in the United States.
So, I guess we are here in desperation saying, we are not the experts. You need to help us. You are the scholars, the scientists. How can you help us volunteers with our project, because our community is dying. There is no other answer.
As a health practitioner, like Salla and me, we are nurses. We know what services are there. We can't do it alone. We need some help.
MS. MAYS: Thank you. Let me also open it up, again, for my colleagues and then to the audience. Are there any questions here?
MR. HITCHCOCK: I have one question. It is a little bit off the topics we have discussed, but I think, Mae, you alluded to it, that the population of Guam on the island is not necessarily the population that it used to be.
I was just wondering about the effects of immigration from other areas in the Pacific, mostly, I guess, to Guam and to American Samoa and then, in turn, how those folks may be integrating further into the mainland United States, or looking for services as well.
MS. GUENTHER: Most of the Chamorrans, yes, do relocate here. The major reason is health issues, medical insurance. They can come over here, get a job and get some form of insurance.
If they can't get a job right away, they are still able to get some medical assistance.
MR. HITCHCOCK: What about non-Chimorrans. What about people from other Pacific groups?
MS. GUENTHER: There is a large Filipino, Vietnamese. The military left, but then they came back.
MS. BREEN: I was involved in a conversation at I think it was the ICC in a cultural cancer conference maybe last year, with Dr. Friedman, who runs the NCI Center for Cancer Health Disparities. I work at the National Cancer Institute, in the Division of Cancer Control and Population Sciences. I am an economist there.
There has been some concern expressed to Dr.Friedman, and they thought maybe he could help, about I think it was the Marshall Islands in particular.
So, we found an expert, somebody who knew something about the health care in the Marshall Islands. I wonder if you could confirm this or provide a little bit more detail and light on that.
Basically -- and I think Guam and the Marshall Islands were in the same situation, the way that he described it.
Other than the traditional health care that is available to people who live outside the American bases, there is basically no health system there. There aren't hospitals, there aren't clinics. The only hospitals are on the base and the people who are not affiliated directly with the base can't use those facilities. So, in other words, there is no health care.
Is that true, and is that underlying what you are talking about people coming to the United States for health care?
MS. GUENTHER: With my understanding, there is one hospital in Guam. The other hospital is a military hospital. The belief of most of the Chamorro people on Guam is, if you end up going to the hospital, you are not going to leave.
MS. BREEN: That is what they believe?
MS. GUENTHER: That is what they believe. Because of the nursing shortage over here, there has been -- the incentives that are offered over here, a lot of nurses have left Guam to come over here to work. So, they are very short staffed.
MS. J. PANG: Could I just add a comment? I think it was interesting. Your question was the access to health care on islands.
I think we from California are impressed with the fact there is no access to health care in the United States for Marshallese.
I think if you look at the number of Marshallese, which is a very small community located in about four major states -- Hawaii, Arkansas and California and Washington -- if they speak the native language, have no interpretive services or no access to services, they are not going to access the services.
I am working on a weekly basis with 15 Marshallese women. The entire program is translated. I have learned a new skill, to pause, take a breath, so they can translate, taking them through a year's course on general health 101, talking about healthy diets.
The major problem -- this is a group of women. Two are employed, who are currently unemployed because our tracheostomy producers went to South America. So, these two women are unemployed. So, I thought, great, I will use them, and they are my interpreters.
Well, out of the 15 women -- and this is just the kind of numbers I work with -- 65 percent of the group are diabetics, and these are generational diseases.
I don't want to know any more, as much as we need those numbers, but that is what my women are telling me. None of them coming from the islands, exposed to nuclear exposure during World War II, none of them have had a mammography.
We are talking about breast cancer, and that was the condition that I would volunteer to work with them, that all women would have a full physical, cervical, mammography, the whole exam, including dental and vision screening during the 12-month period.
Two thirds of them need MediCal and right now, because of immigration restrictions, they are not sure whether they qualify or not, because no one can understand the pact.
So, we are facing, I am doing the best I can, but I keep getting these huge governmental barriers that I cannot even go there because I don't have the expertise or the resources to address them, but I am taking these 15 women shopping, learning to cook differently, learning about the health things related to diet management.
All of us are obese. So, we share something in common. So, we know our goal is to lose, if we can, during the year period. So, we are all working together as a group.
These Marshallese women feel at this point they have no access to current California resources for health care. So, as we talk about the islands, I just want to insert, don't forget, we have a group here and they really are having such difficulties.
MS. MATAALII: If I may add to what she was saying earlier, in the island, in Guam, it is a very similar situation with us in American Samoa.
We have one major hospital, just one main hospital on the island. We have a chronic shortage of nurses. The retired nurses, who have been retired for how many years, they are asking them to come back and work. There is a shortage of nurses, a shortage of doctors.
We don't have specialists back home. That is why there is a big influx of people coming from back home over here, looking for medical help. When they come here, it is even worse here, because a lot of them -- I shared with you earlier, the biggest populations are from Western Samoa, who are non-resident, who a lot of them are so scared, you know, they are looking for relatives to come here, and are looking for medical help.
So, a lot of them are not qualified for any kind of medical help. I mean, the immigration issue is a different story.
Even we have some ones who are U.S. nationals, they are coming here, they don't understand the whole process of how you can qualify for MediCal or Medicare. A lot of them are depending on their families here, their grandchildren, to help interpret for them.
The whole process, the system, how to go about getting Medicare and MediCal, it is very difficult for these people.
I have worked as part of HOPIS program with the Guam Communication Network, we have worked on translating these forms. We have held a focus group, how to help our community understand how to be qualified for MediCal so they can get some kind of medical help. It is very difficult.
You try to tackle one thing and something else -- it is unbelievable. With no funding, it is very difficult for us to do any kind of work.
The small funding we had, the subcontract, this is the only funding we used, and we used it for everything, to help pay for women to find a doctor.
You know, a mother has an abnormal mammogram, we have to find a doctor. We have to find a doctor who can provide free medical care, and then we have to pick them up, transportation wise, pick them up and interpret for them.
It is a component of so many problems medically, and us in the medical field, in 28 years, I have seen it all, in my own community.
Yes, I have met a lot of the Marshallese through Chang Pang(?). My heart goes out to them. I have met them at some of the conferences. They shared his story. They had a difficult time accessing any care.
MS. GUENTHER: If I can add to that, I recently met a woman. She was Chamorro. She was diagnosed with breast cancer. Because she was under 40, the insurance company said they wouldn't treat her, because you only get breast cancer if you are 40 or older. She was in her early 30s.
Her husband had to go and fight the insurance company. So, one of the things, who determines that if you are over 40 years old you get breast cancer but, if you are under 40, you can't. I mean, it was a struggle, because that was his biggest fight.
They said, well, she can't have breast cancer. She is under 40. Well, excuse me. It is not your breast.
MS. BREEN: I was just wondering, we on this committee don't have the option of helping to fill in the gaps that you have so eloquently told us about today.
Our mission is to try to document these issues. Clearly, there is a huge gap right there in the community, which that is the part that we would like to help to fill.
There was a group here yesterday, the Special Service for Groups. Are you involved in that? Have they been able to help with some of the data needs?
It strikes me that all of you who are health care providers are in a position to collect, maybe not a population-based survey, but to use the data that you have at your disposal to begin to document some of the very chronic health issues that you are aware of, just by observing it.
I wonder if an organization like this or some -- you could be linked to some other groups that could help you with that documentation process.
MS. J. PANG: Again, the reality is, if they did study our populations using the census data, when they go to their smallest threshold, many of our communities don't meet that threshold. So, we are not even in the mix. We don't even make it to the gate, because our numbers are so small.
Most of the SSG information that I have gotten, there was very little specifically Pacific Islanders, but our ambition is to have them do strictly Native Hawaiian Pacific Islander training.
Jerry Wong for the census did that, and he opened our eyes to a lot of numbers that we are still ruminating about, but the reality is, when we get into health care and health disparities, are there sufficient data, because I fear that our threshold is below that, so we will never have an opportunity.
MS. MATAALII: We have been involved with SSG for a couple of years now. They still have very limited data on our community. We are subcontractors with them, but we are just about going out and do this, and college the status.
MS. J. PANG: SSG is restricted.
MS. MATAALII: Very restricted, and they have been around for a long time and they don't provide the data for us. We are still trying to collect this data and submit it, whatever is required for the activities that we are sending in. So, ask them about the data they have? We are already subcontractors.
MS. GUENTHER: There is the privacy act, because all of our clients -- from my understanding, having just taken over care, we were informed, because I had several Guam referrals and I thought, how can I help these people, because they don't live here necessarily permanently.
Some of them are having to choose to live here permanently, but now they are having the problem of now they need to find a place to live.
So, recently, between David and Lola, David going back to AAA, he found out that, yes, we could help them out, but then, again, this is just new. So, any data that we have in numbers, again, we are just starting. That doesn't count for all the people that went through.
MS. MATAALII: And limited funding. The programs that -- our subcontract to them is just tobacco, and it has to do with tobacco and managed care, but all the other issues that we shared earlier, diabetes, cholesterol, I mean, heart disease, stroke, they haven't been able to collect anything.
Now I know why, because we don't have any programs under them on those conditions.
MS. MAYS: I want to make sure that we also allow people who are in the audience to come up. If you have a question or comment, please come up to the mike.
MS. LUCE: Pat Luce. In reference to data, this is one of the reasons why we have been so adamant that we have got to have Native Hawaiian and other Pacific in, across the board.
When we look at the cancer registry, the SEER information, when we look at the hospital when the clients go in, they begin to identify at that level who they are and where they are and so forth.
Even clinical trials, when you go there to try to abstract and identify how many patients reflect this group and that group, we don't exist.
We have, in the past, fallen in the larger category of Asian Pacific Islander, and when we try to extract Pacific Islanders from that, it is a very difficult process.
So, what you are finding here, we are, on a daily basis, addressing the needs in our community. Because of the smallness of numbers, or what is known as an insignificant number, this is what we are faced with.
We are also asking those who work with the smaller populations, see how you are addressing them, and look at how you can fold us into that same process.
I know that, with the SEER registry, that there is a special effort right now addressing American Indians. We are hoping that you take the same kind of approach in looking into our populations. Otherwise, we will continue on being left out.
It is very difficult for us to address treatment, and to know how to deal with intervention and prevention, if we don't know what we are dealing with. Thank you.
MS. MAYS: Any other comments? Anyone else in the audience that wants to make a comment? June, would you like to make any other comments?
MS. POUESI: Thank you very much, Madam Chair. All I wanted to add, also, is for information. If you are looking for information, specifically, the only Pacific Islander research that was done recently, we are using that to model for the other Pacific Islander, is the one that was done through the National Office of Samoan Affairs, known as the Native American Samoan Cancer Control research, which was done in collaboration with the University of California Irvine.
That is the so-called model that is going through the circles of those who are addressing it, and this is funded by NCI.
Presently, also, we have the Pacific Islander cancer control network, again, funded by NCI. It is 18 special population groups under, I believe. Dr. Jackson that has a focus on -- unfortunately, we don't have the Native Hawaiians in this component. It is the Tongan, the Chamorro and the Samoans, and it takes into consider two of each group, one in Utah, one in San Mateo, which are the Tongan component. The other is the U.S. Territory of Guam, and San Diego under the Sons and Daughters of Guam, and the Samoan component is the Native American Samoan Advisory Council, led by Paramount Chief Naliai(?) in American Samoa, and I am the other PI for the office of Samoan Affairs.
Those are the models that you can look at. Now, for the Native Hawaiian component, it is coming under Imihali(?). That is specifically a very interesting model which utilizes a CBO.
They themselves take it and they contract different universities, and that is the model that we are looking at for future for all of the other Pacific Islanders.
In that PICCN, there is an infrastructure set up. What that infrastructure set up is that we are taking the same model for the American Samoan research that ties the community people with what is available in their health resources in the region.
For instance, here for my region, we have the Harbor General, UCLA. The systems administrator sits on that advisory.
From the American Cancer Society we have Rosa Cosa(?) from the Long Beach area. From the YWCA Encore, which provides the mammogram and pap smear, we have Sylvia. I forget what the last name is. We also have Dr. Mao sitting on that, and from the nurses group, we have Salla Mataalii.
These are the things that we are trying to do, is to build it and then move it over to share. So, wherever in the United States that the Pacific Islanders are, the model can be taken and moved there, because it is culturally and linguistically sensitive to those populations, developed by the population itself.
Focus groups were done in the population and evaluated, based on that, through the NCI and through the universities. That is just a comment that you may want to look at.
MS. J. PANG: With such great models -- and I commend you for taking the step -- I am in Orange County and I have a small grant through Susan J. Coleman, and with that, one of our projects with the Wanda J. Cobb Cancer Survivors Network.
I think as we build these great networks, we need to build, as islanders, a safety net. A young native Samoan, who came to the United States in November to take care of her husband, who was under lung treatment with UCI, discovered inadvertently that she had breast cancer, had some major interventions.
She brought her young children to the United States where she then entered the therapeutic chemotherapy radiation period, came up to us in March and said, you know, I have bene here.
She is an American Samoan here in Orange County living in a motel, with her mother brought out with children, trying to manage without that link.
I was surprised, only because I knew that they were doing some partnerships with UCI. I said, haven't you networked with your community? Hasn't anyone at UCI connected you with the Samoan Affairs or SANA or any of the Pacific Islander groups?
So, as of November she existed in the community without any of the supports and, as soon as I found that out, I started making calls and, thanks to Salla's network, we got help to her.
Here, we build these great models and we forget, in their own institutions, why isn't there that network? Although we make good as a model, we have to be careful. The community still falls through the cracks and we have to prevent that, and we have to cover ourselves with some type of netting, because those young couples are falling through and families are being devastated as a result of it, but mahala for taking on her cause.
MS. POUESI: If I may respond to what you are stating, thank you for referring the gal, and we were able to address it and we were able to identify who her family was here.
I was just in American Samoa last week for one of the networks that was headed by Paramount Chief Naliai. The president of the community college was there, and I had presented that issue of that particular case they had.
What they are looking at is a network between American Samoa and here, to find out what resources we have here, tie it together, and I think we need to use that with the other Pacific Islander groups.
MS. BREEN: I am sorry, this shows my ignorance, but the Paramount Chief, is that the person who is like a mayor?
MS. POUESI: He is the district governor for the Manoa Islands. American Samoa is -- the two main islands are Tutuela, there is Ono and there is Manoa, and there is a Rose Island and Swain's Island.
He heads one of the main island groups, and his chief title is a very high title, meaning that he has a lot of say in terms of what happens there.
What Salla was stating, you really have to have a navigator. If you don't know anybody in the community, you are not going anywhere. The best thing to do is go to the chief or go to someone who is identified as a respected person in that particular community, and then that person serves as your navigator in your research that you need to do.
A lot of your research has to be done on a one-to-one person kind of situation. Don't use the phone. The phone is always disconnected. Don't use that.
It is better for you to go in on the one to one, sitting face to face. If a navigator takes you in, you have got your foot in the community.
If you go in by yourself, the door will always be closed to you. These are just things that, when I talk to other entities -- being education, social services and so forth -- those are the main things the keys have to be put in.
In reference to American Samoa, the migration, the main migration came out in 1952 with the USS Jackson. A thousand families came out under the movement from the Department of the Navy and it was moved over to the Department of Interior.
The people had to decide, who were in the navy, are they going to leave or are they going to stay. That gives you an idea why the people moved. There was also a famine at that time.
So, with 1,000 of the people going in, they met the same type of things the refugees met. These people are taking our jobs, they are taking all the housing. There are problems.
So, it was not indigenous to only us as American Samoans, but it was things you see as new emerging migrations coming in to the United States.
Some of the patterns I would recommend that you look at and you see some you can use. Others you have to adjust according to the culture, and the manner that it has evolved, just for your information.
MS. MATAALII: Just to add what to what June is saying, you need a navigator. This is exactly why we were so successful in outreaching the community through this diabetes program. The core of our community is churches here, for the Samoan community and I am sure with the other Pacific island community.
We don't have like villages, but here, the core of the community is churches. So, in order for us to be successful to outreach our community, you have to go through the ministers.
That is the only reason why we were successful in outreaching a lot of our Samoan community, is that we contacted the ministers.
I have often shared, at different conferences I attended, they often asked me to share why we were successful in some of the outreach we have done.
This is the reason why. You have to know the community. You outreach through the chiefs. Like Chief Laliai, he has got so much authority back home, that he has a lot of say so. He carries a lot of clout in the community.
So, here we go through our ministers and, through our ministers, we penetrate the churches, the members, and that is how we were successful, teaching them, holding different classes.
The education classes were in their halls, in their community. Make them part of our effort, of our programs. That is the most successful program I have ever worked with, but it was only supposed to be a year. It was funded by L.A. Care.
We were able to stretch the money to be able to do it for a year and eight months. Unfortunately, there is no more funding, and we stopped the program just like that, but we met our target.
We screened over 1,000 people. We held different education classes for them and completed a lot of our medical care.
If we provide the money for diabetes, to teach them how to do your own screening, how to monitor your blood sugar, what to watch for in terms of nutrition, it is important.
This is the biggest part of our community. They love to eat. Therefore, it was very difficult to even touch on nutrition.
You know, Dr Mao and I would be standing there and they are laughing. What are you talking about, you know. I mean, you are talking about how important the portion -- you know, eating a meal each day, if you are diabetic, to this day, it is very difficult for me to think about, how do we penetrate the community.
We have seen so many of them that have made a change in their lives, that changed their lives. They know about diabetes, what to watch for, the symptoms, the risk factors.
I mean, these are the things that we are hoping that we can take out to our community and teach them, increase their awareness of the illnesses and the diseases that are affecting our own people.
MS. MAYS: Thank you. Before we end this session, I just want to see if Dr. Kagawa-Singer has any comments she wants to make, because she has been kind of the navigator for us, to make sure that we got such great people here.
MS. KAGAWA-SINGER: [Comments off microphone].
MS. MAYS: I want to echo what she has just said, which is, for us, part of what is important is, we can only speak in the sense of understanding.
I mean, we can read a lot of facts. We can find all the facts that tell us you don't have data. So, that is why I kept telling you, that part we knew, but I think it is the passion that you brought and the experience that you have with you, that helps us to be able to translate this.
Part of what we often talk about, when we try and make the case is, well, we need to make a business case, we sometimes say, meaning that we need to convince them that you are going to spend more money if you don't do this, or there is a problem if you don't do this.
So, what you have done today is translated things for us in a way in which it makes it easier for us to sit and try and think about presenting things and making a compelling case.
For those of you who are worried today about what to say, you did wonderful, as far as I am concerned. I can tell from my colleagues, who have been sitting here paying great attention.
So, I really want to thank you for the time that we have spent today. Some of you we got at the last hour. So, I know that you have many other things in your life going on. So, I am honored on behalf of the committee that you made the time.
As I know from my colleague, Dr. Kagawa-Singer, your phone probably rings all the time. People are probably knocking on your door, finding you in all kinds of ways, because you have many pressures, you are needed in so many places.
So, on behalf of the committee, we appreciate that you recognize that we want to do the best that we can do, and the only way that we can do the best we can do is really to have had you here today.
So, I appreciate your taking the time, and I am honored to have had your story as the chair of this group, but I also know my colleagues. We will take the integrity that goes with that being honored, and try to do the best that we can do, and translate this into something where we will try and make a difference.
We can't guarantee that we are going to change the world, but we can guarantee you that we will make the best attempt that we can, given how much we have learned.
I will say personally that I have learned a lot, and I thought Marjorie had already taught me a lot, but I have learned even more today.
So, really, from the bottom of my heart, I want to welcome you here, but I want to thank you also for sharing with us.
MR. V. PANG: I would like to thank you very much for being so patient in accommodating us, and for listening to the style that we give. It is just talk story type, rather than having a big agenda and power point and everything. Thank you very much. We are not high tech. Maybe the next time.
MS. J. PANG: Or maybe never.
MS. MAYS: I was going to say, you don't need to come to us that way.
MS. J. PANG: At least, mahala you, for the respect and to the attention to this and to our story. Can I say, on behalf of my community, that we would like to reciprocate, and your next visit to California, can we hold it in Carson where our community it, and let us host you?
So, your next meeting, if you would like to convene, come meet the Native Hawaiians and Pacific Islanders in their back yard.
MS. MAYS: Wait a minute, Marjorie is laughing. You missed one thing. I live here, so I will come and visit you, and I am all about being fed, so don't even worry about it.
MR. V. PANG: I now yesterday they were saying, where is the taro?
MS. MAYS: I love taro burgers.
MS. MATAALII: Madam Chairman, I can't help but sitting here thinking, it was just two years ago, or a year and a half ago, we had almost the same panel.
I don't remember any of you sitting there, but we had it at the Guam Communications Network office. As I am sitting here, these are the same concerns, not the same people, but there were representatives from our Pacific Island community.
I know there were representatives from Secretary Thompson's office. I mean, we shared the same concerns, the same issues.
I can't help it but going back and thinking, a year and a half ago, two years ago, I am thinking, what ever happened to that? Where did it go?
I hope that something will come after that. You know, we have poured out our hearts before. I am sorry, I have to share this, but I can't help sitting here thinking, we talked the same thing, shared the same stories and the same issues, and nothing has been done. Nothing has been done. I just want to share that feeling with you, that thought with you.
I don't mean to put you on the spot, but with all these issues, they have been shared many times, and I remember speaking for my community. Some of the chiefs of the community were there, from Chamorro, from Tongan, from -- you know, they were there. I just wanted to echo that.
MS. BREEN: It sounds like Secretary Thompson could use a reminder.
MS. MAYS: I am willing to be held accountable. Now, what I can do for the federal government, that is very different, but one of the things I will say is, I actually live here. I am a professor here at UCLA.
I think, as Marjorie knows, we will see what difference we can make. I can't promise you in terms of the federal government. Marjorie kind of knows some of the things that we are underway of trying to do.
I think there are some other things at another level, at the level of the university that we can actually work with you on.
MS. KAGAWA-SINGER: I just wanted to thank all of you for coming. The group here are my teachers, and I appreciate your making the effort. I know what sacrifices you have made and I deeply appreciate them.
MS. MAYS: Okay, this is the point at which we are supposed to have a wrap up, so that we can talk just a little bit about what the two days have been like.
I think we should also maybe say a little bit about what the process will be, so we can just share that with people. Do I have any comments, questions, anything like that from my colleagues, before I go any further?
Okay, we are going to take a bit of a break, so that we can have just a bit of a break. Can we take about five minutes and then come back, and then we will do this? Okay, thank you very much.
[Brief recess.]
MS. MAYS: One of the things that is useful to do at the end of the meeting, I am told, is to plan the report. Rather than us walking away, it is now to talk about what are some of the things that we heard that we think are significant themes in this and what do we think would be a good way to pull this together to present this information.
So, I want to spend some time talking and having each of us say either an area of recommendation that you think we should try and highlight.
What I want to do is try and think about how we want to do a report on this particular population. So, let me just outline -- I will just do this, tell you what my ideas are, and then we can go from there.
First, I think that we should say, have we heard from everyone, or should we be concerned?
MS. BREEN: Can I ask a question? Is this a report on this particular hearing, or on the series of hearings?
MS. MAYS: This will be a report that is in the series of reports, and this particular report would be looking at race and ethnicity in Asian, Native Hawaiian and other Pacific Islander populations.
What we would do is probably draw on our territories report. So, that would be one part of this. I want you to take notes on this. So, we would want our territories report to be a part of this.
It should be somewhat self contained, but the one piece is that, if Paul has designated Hawaiians, then we would also lift from that the Native Hawaiians and put it in this.
Let me talk a little bit about this, because it is a way to think about this report, and it did come up again at the end.
Marjorie and now when Salla was talking it came up, and that was the notion of these small populations or indigenous populations, and that there are more similarities than differences.
So, there are similarities in what happens with the American Indian Alaska Natives to some of the small populations here, in terms of what their issues, and also maybe in terms of what recommendations and solutions there are.
Remember, part of what we often face is, do we write things where it is all about one group, or do we try to make broader recommendations that many groups can fall under.
So, probably a decision making point right now would be, would it make more sense for us to think about this as a report that is the small group indigenous populations, which means that, if we get Paul to do some work, that we build on Paul's work and have it be -- it would be American Indian, Alaska Native, Pacific Islanders, and Native Hawaiians, and then Asians kind of get taken out.
MS. BREEN: I think it would make a lot of sense to do that. I think the way to do it -- because we talked about this a little bit today and then I was talking to some of the Hawaiians, just informally after the hearing today, and asked that question again about, you were talking, on the one hand commended the government and the OMB regs for regrouping the Native Hawaiian and other Pacific Islanders on their own outside of the Asian groups, because they were being swamped by Asians and you couldn't see the health disparities that existed in those populations.
I said, what do you think about grouping, re-grouping -- but at the same time there is a threshold problem. There are not enough numbers to do anything with the data that is being collected.
So, I said, you know, what about the idea of regrouping. Would it be more appropriate to regroup with American Indians and Alaska Natives.
They were kind of mixed about it. On the one hand, it would help the numbers. On the other, it is also a more similar population to themselves.
I said, I was thinking more in terms of -- they had mentioned that American Indians have a special treaty relationship with the U.S. government, which they don't have.
I said, well, that is true and you probably wouldn't want to emulate the Indian Health Service. Well, it is not just the Indian Health Service. It is the problems with health care within the Native American community.
I said, what I was thinking was more along the lines of internationally, even Canada, you often see indigenous people as the grouping, and would it make sense to have an indigenous people grouping.
They said, well, yes, with that caveat. So, there are yeses and nos. So, if we were to do a report that talked about indigenous people and had one section, maybe a general introduction, then one section that looked specifically at American Indians and Alaska Natives, and then a second section that looked at Native Hawaiians and other Pacific Islanders, and then some general conclusions about indigenous people, again, with whatever we found that was not similar. I don't know what we will say in the end.
MR.HITCHCOCK: The populations we heard from today, though, are really not indigenous populations, are they? We heard very little about the Guamanians or Chamorros on Guam. We heard mostly about Guamanians and Chamorros in Los Angeles. To me, those are not indigenous groups.
MS. BREEN: That is the other big factor that is different. They are indigenous people but they have migrated to this country.
In terms of sort of thinking about it anthropologically, they are groups that rely much more on --
MR. HITCHCOCK: A lot of their problems seem to be reliant upon their immigration.
MS. BREEN: No.
MR. HITCHCOCK: Their dietary habits haven't changed since they migrated?
MS. BREEN: Yes, that was true, but part of the reason they came here was because they didn't have the infrastructure, including the health care infrastructure, there to keep them there, and that there was a brain drain from their areas to this area, and they were just following the brain drain in order to get the services that they needed.
So, they are indigenous people from the point of view of looking at the world, but they have migrated, whereas Native Americans and Alaska Natives are indigenous people who are located where they are indigenous to.
That is another big difference and a reason we could put them in the same report, but we would definitely want to separate them into two groups within the report.
MS. MAYS: Maybe part of what we are kind of going back and forth on, which we can do, is that maybe the title of the report isn't indigenous people. Then that doesn't raise either way.
Conceptually, it really is that concept of what happens. I think that that seems to be a factor, but it may not be the only factor.
If we put it in the title of the report, people may start looking for that and they really lose what we want to say by fighting with us about the title.
I think we will use that as -- we are going to do a Hollywood thing. That is going to be a working title and all that kind of stuff. That is what the script will be called, but when you see it up in the movie theaters, it is a totally different title. We will do the same thing.
MR. HITCHCOCK: Statistically, it is kind of like what old-time statisticians would call the rare, elusive populations, those small rare populations and how to capture them.
MS. BREEN: I like that as a Hollywood title, rare and elusive populations. That would catch my attention.
MR. HITCHCOCK: I will tell you, it is almost like any other group of people.
MS. MAYS: That is interesting, because being on the committee on violence health statistics, you take the statistician title, and they are all, ooh, what kind of thing is in it.
I think we should float this as maybe to think about the structure. What I would like to do is to make sure we ask within these groups, so that we don't do something politically that would blow up. So, I will run this by some of the groups and figure out kind of what is what.
The other question would be, though, have we heard from enough of this group to ensure that we are okay? I am going to tell you, I think the answer is we haven't.
I think we should try and make an effort to hear from the Tongans, since there was no one here. Just because you are not here, then it is like nobody is going to say anything about you.
We can either do that in the sense of -- there are a couple of ways to do this, and I think we have to think about when do we want to do this report.
If we said we want to present this report in November, then the suggestion I would make doesn't work. If we say we want to do the report at another time, then that is a possibility.
If we say we want to hear from some other people, then what you could do is continue to get anybody that we didn't hear from in November, when APHA is meeting in San Francisco.
MS. BREEN: Carry on with this because when would that mean the report would be due? I don't know when people are winding off the committee. We need to make sure that people who are on the committee now are still around to write the report and all that stuff.
MS. MAYS: You do have to think about that relative to me, for example.
MS. BREEN: In theory, I think your idea is good.
MS. MAYS: I am a 2004 person.
MS. BREEN: What month?
MS. MAYS: June.
MR. HITCHCOCK: Don't put it on your calendar.
MS. BREEN: Can time be extended?
MR. HITCHCOCK: It usually is.
MS. BREEN: Would you be willing to have it extended?
MS. MAYS: I don't think it is me. I think it is the administration. It is like, you look at my CV, and I am not like of this administration.
Let me put it this way. We should have that work that I am trying to do that I try to wrap up, for the simple fact that I don't think we can be guaranteed that I would necessarily be automatically -- in the past, I think people have been more automatic. I just want to be cautious about not leaving a whole lot of work hanging out there.
MS. BREEN: Would it be possible to be writing up the report and finish up the last chapter after the APHA meeting, and then we could sort of do both?
I believe we probably -- I think we have probably done the work we need to do. I don't think we are going to find out a lot more by talking to people by the other island groups we didn't hear from today.
MS. MAYS: I am not sure about that.
MS. BREEN: I suspect they are going to emphasize some of the points and maybe make a few new points, but I think we could add in those points and still carry on with writing the report in the meantime.
MR. HITCHCOCK: We can't really write the report. If we write the report as though we have heard from this group and that group, then we could be in trouble.
If we just sort of address commonalities among these smaller groups, without dwelling on --
MS. MAYS: This is what this group said, this is what that group said. Here is what I am concerned about, and I wouldn't have said this yesterday, but today, I am concerned that we may not have heard enough from people from the islands.
I don't know that everything is exactly the same, and I really didn't understand this concept of -- what were the two words she used that I asked her about -- when she first started talking about -- there was a territory and there was a trust. I don't know what difference that makes.
MR. HITCHCOCK: It is in our earlier report. We could go back and read it.
MS. MAYS: So, we have the trusts and the territories.
MS. BREEN: Could you get copies of that report to us? I think that would be very helpful, and that might help us understand a little bit more to what extent we need to carry on with other small populations.
MS. MAYS: It is on the web site, because I have actually printed it out before. Gracie, can you just print it?
MS. BREEN: Or just send us the URL, find it and send us the URL.
MR. LENGERICH: Actually, if you have copies of it around, I would like to have a hard copy of it.
MS. BREEN: Do you have copies of it, Gracie?
MS. WHITE: If I don't, I can print it.
MR. LENGERICH: If you are just going to print it, I can print it, but it is nice to get a hard copy of it.
MS. MAYS: Oh, we don't, because that is one of the ones -- it reminds me what we didn't talk to Paul about. That is one of the ones where we were going to try to get it as a publication.
Anyway, maybe before we fully say it, it probably would be helpful, because it has been a while since I read it. If we read it, maybe the things that I think are missing about that perspective would really be taken into account, and then we can figure out that we only need to update that a little bit as opposed to needing to have, you know, lots of people come in. Then I think your point is well taken.
MR. LENGERICH: What other groups do you think we haven't heard from?
MS. MAYS: We haven't heard from the Tongans. We haven't heard from the Marshallese, I guess, as they call themselves. See, these are all the ones that I was still trying to see if I could get.
MR. HITCHCOCK: Commonwealth of the Northern Marinas, Pilau, there are six of them altogether. Three are really associated states and three are territories, as I remember.
MS. MAYS: We actually were trying to get some people to come for this, but you kind of get caught in this catch-22 about that.
That, I think, is what we haven't heard, and I just want to make sure that we do okay with this, and not get criticized for not having those voices.
I agree with Dale. I think we shouldn't write the report where, this is the section on the Tongans, this is the section about -- instead, we should write about them more conceptually. Then we will be okay.
I don't know enough to know if they have anything else to tell us that would change our minds. That is why I am trying to be somewhat on the cautious side and say, well, the next easy way to do this without it being, you know, super expensive, would be I think some of us will go to APHA. If not, I think some of you might be okay about coming to San Francisco right before APHA, and we could have the rest of the hearing.
MS. BREEN: Why don't we plan on that, pending investigation, as to whether it is necessary, and then carry on with the report, because I don't think we want that to languish.
MS. MAYS: All right. We will then, if you would help -- since you know this territory stuff much better than I do, if you could give me a list of those groups -- I have some of them.
I will then sit down with our experts around here to ask them to kind of help me think about it, and then we will come up with what we think we should do in terms of a few people coming in. This should only be about one day. I don't think we need more than that.
That should cover everybody and then that is it, and we will plan on that. We now know well enough in advance that, if we are flying those people over, that we can now tell them, and we will try to take advantage of the case -- like we will try to get Neal Halifax. He is the Marshallese person, but he couldn't leave. So, we will check and see. If he is coming to APHA, then we don't pay. We just do the hotel and move on.
MS. BREEN: One question, though, I would ask. I usually get pretty pumped up after these hearings because they are very exciting, and the things that we hear.
Would it make sense to stay an extra day to finish up the report or do some writing on the report, or do some work on the report. So, that it would be two days, but one day would be the hearing and the other would be some report writing or something.
MS. MAYS: I agree. See, I am learning now from the other chairs, that it is probably more productive that, when you have a hearing, like we are doing right now, to plan it and then at your next one you know what you need to do. So, why don't we plan that we will do that. I think that is a good suggestion. So, we will find out the dates, Gracie, and you can even get started.
The thing that I will put on the table, particularly since Debbie is sitting here, that will cost us in terms of bringing people in. So, I am putting this on the table now. I don't want grief later, that we may need five people that are all going to come from --
MS. JACKSON: Give us a list of the people and we will be fine.
MS. BREEN: Can we justify more?
MS. MAYS: What we are saying is, we may have to bring, say, five people from islands.
MS. JACKSON: That is significant.
MR. HITCHCOCK: Not on these different things, whether you are a territory or whether you are a --
MS. MAYS: I don't have the terms right. I was being pretty good until the hearings.
MR. LENGERICH: Let me just throw this out. We are going to make a different effort for this second group? We are going to bring people from islands, whereas here we heard from groups that are on the mainland here, the L.A. group. So, is that going to be problematic?
MS. BREEN: You mean we ought to hear from Native Hawaiians living in Hawaii, as well as Hawaiians living in Carson City?
MS. MAYS: We did. Yesterday we have Noland Malone here, who actually came from Hawaii to be with us, and kind of represented that.
MS. BREEN: We didn't have anybody who was from Guam. The two sisters were from here. They immigrated when they were young.
MS. MAYS: It is a point.
MS. BREEN: I think if we do it, we should investigate that possibility. I also think that we may luck out and the APHA may attract -- Debbie, I think you should alert Marjorie to the possibility of having to fund people, but if anything is going to attract people, it would be the APHA. So, we may be lucky.
MS. MAYS: And it is going to be in San Francisco. So, it is more likely for the Pacific rim to come.
MR. HITCHCOCK: What we learned from Philadelphia, though, is that these people sometimes look at us as their funding source to come to APHA.
They are planning to come to APHA and then all of a sudden they hear the NCVHS is doing a hearing.
MS. BREEN: We can talk to the folks here and ask if them through their networks if they know of people coming anyway, and link in with them, rather than inviting people.
MR. HITCHCOCK: We can do additional expenses.
MS. MAYS: Again, it is like one of the ways to maybe do this is I will talk with the various contacts that I have, because as you can see, they are very useful, in terms of, okay, does so and so usually go to this meeting. So, you have a sense that they typically come, they are coming.
At the same time, I think we have to kind of decide that we are doing it or we are not doing it type thing. I think we just need to tell Marjorie and we need to move on kind of thing in terms of this, in the sense that, we have to decide that we are going to do it or not do it, and I think we are not going to have a gravy train in the sense of 100 people.
MS. HITCHCOCK: She may say that we have already done that with the earlier report but there is a different focus there. That was more or less on the infrastructure. Now we are talking disparities, and it is a little different.
MS. BREEN: When was that other report done?
MR. HITCHCOCK: It is outdated, probably, because the compacts have recently changed. 1998, I think.
MS. BREEN: It is not that old, and of course, it was pre-OMB changes in the categorization.
MS. MAYS: That is part of what you also want to check into. I think we need to ask the questions of the people we know. They will know their experience better, to the extent that we really need somebody from each one of those.
The big ones I think we probably should, but I don't know that we need to do it for each group. So, let's try to figure that out, because I definitely need help in figuring this out.
MR. JACKSON: It would be nice if Joel Steinwachs could be there.
MS. MAYS: I think, then, what you are looking at is focusing then mainly on the people that we need for the hearing.
MS. BREEN: Gracie maybe could just send out a note telling people, this is what we are thinking, we are not absolutely sure.
I sometimes go to APHA and sometimes don't. If this was happening, I would make a point of it. I would put it on my travel calendar, and we are all doing that, I think, now.
MS. MAYS: All right, it sounds like we are going to do that. I think what we should try for, in terms of finishing this report, is this is 2003, the February 2004 meeting.
MS. BREEN: The full committee meeting?
MS. MAYS: Yes, as in it is finished to turn in to try and get through. What that means --
MS. BREEN: That is the report of recommendations from all the hearings now?
MS. MAYS: No, just for this particular one.
MS. BREEN: Will we do that parallel with the other one?
MS. MAYS: We are going to try to do the other one before that. I am projecting for this one.
MR. LENGERICH: The other one?
MS. MAYS: The population-based one. We talked about that the other night. I am sorry. So, if what we try and do is to have a report -- if we try to have a presentation -- we meet in November. Do you all have the dates?
MS. BREEN: Oh, I just had a thought. Of the APHA?
MR. LENGERICH: That is almost Thanksgiving.
MS. MAYS: No, I mean for our meeting.
MS. WHITE: Last year the APHA was like the 8th of November, or something like that.
MS. MAYS: We have the internet here.
MS. WHITE: Last year, the meeting in Philadelphia, that was on the 8th of November, and APHA followed behind that.
MR. LENGERICH: The full committee was the 17th or 18th.
MS. WHITE: Yes, something like that.
MS. MAYS: Are we scheduled already for November? Do you know the dates? Okay, it is November 5 and 6. That won't work because I bet the APHA is the 7th, 8th and 9th. The annual meeting for the APHA is the 15th through the 19th.
So, what that means is that our committee will meet before we go to this meeting. I think we would have enough done that maybe we can have a discussion at this meeting at least, with an outline or something like that.
So, it is November 15-19, and our committee meeting is November 5 and 6. So, it works.
MS. BREEN: That is the subcommittee meeting?
MS. MAYS: The full committee.
MS. BREEN: Are we meeting, too?
MS. MAYS: Yes, we usually meet the first day and we definitely already will beg for three hours on the first day of our time so that we can work.
What do you think were some of the themes that emerged from this meeting that are the recommendations? Some of this will require, I think, a little bit more work.
The reason I am pushing now to ask about this is that, if we go ahead and work with Paul, part of what we can do is put these down as things for him to think about developing as part of his report. So, I think it is useful to talk about it.
MS. BREEN: In the interest of starting with the positive, I think we should start out by saying that Native Hawaiians and other Pacific Islanders are delighted to be a separate group, and that this OMB recommendation was passed.
It sounds like they lobbied for it. I don't know how it came about.
MS. MAYS: I think that is why the other groups want to do it, because the Native Hawaiians did lobby and it was an effective lobby. Now the other groups, I think, want to use the same mechanism.
MS. BREEN: So, that is the good thing. Then I think everything else sort of flows from the other, which is, however, the threshold for this group is not large enough to be able to collect robust estimates in any national survey that we do in this country.
So, everything else falls from that, our recommendations. CHIS, I think, collects enough Native Hawaiians and other Pacific Islanders to do some analyses, but I think there are 500 or 600 or something. It is a biennial survey.
MR. LENGERICH: They won't collect it after March 2004 if this proposition goes through.
MS. BREEN: There are exemptions for medical, and this is a federally funded survey.
MS. MAYS: Not exemption. That is money that is --
MS. BREEN: You mean it won't allow exemptions?
MS. MAYS: We have to realize that it will have to go through the state of California. Part of the money comes from - a big chunk of the money comes from the state of California. You might have a piece that is federal money.
MR. HITCHCOCK: If it is federally required --
MS. BREEN: We don't know. We haven't run this by a lawyer, but that is the talk that we have had between the entities, in terms of what is going to trump what. Usually, federal law trumps state law. I don't think we really need to talk about it here.
MS. MAYS: Let's back up, because I think that is just California and they were very clear. So, I think that it is CHIS responsibility, but we need to get to what the federal level would be.
MS. BREEN: But that is the only data we have. To me, one of the main themes that I kept hearing again and again was that we have got all these problems. Here are the problems we have seen on the ground as nurses, as practitioners, as people working in the field, as people working in the community, as members of the community, and they gave us a lot of examples.
They said, we don't have any data. So, when we go to get a grant or we want to get funding or we want to move forward with some agenda related to the health problems we see every day in the community, we don't have data to make the case.
MS. MAYS: Here is what I am saying. Our responsibility is to deal with this at a federal level, changing the federal structure. CHIS could disappear after 2003.
MS. BREEN: I think it is important to say, there is one example of data, and we can analyze that data to show that, in fact, if it can document some of these problems, then at least that is a case for the need for the United States government to get national data which is broader than CHIS, because we have already seen health disparities in these populations.
Therefore, we really should make an effort, even on small populations, if it is a population with lots of disparities, and therefore, the government should make an extra effort to collect data in these populations, even if they are very small.
MR. HITCHCOCK: They will never do it on a national basis, I don't think.
MS. MAYS: I think to some extent I am not sure that is the recommendation we should make, and maybe it is more that family of studies or slate like thing.
The thing I am just trying to get away from is hanging our hat on something that could disappear, hanging our hat on something where we have no control.
MS. BREEN: You mean like CHIS?
MS. MAYS: Yes.
MS. BREEN: I am not suggesting we hang anything on CHIS, except to say, but we do have one source of data.
MS. MAYS: I thought you were saying to have them analyze the data to make a business case.
MS. BREEN: I am confused now. I am talking about our big report. Are you talking about the policy report?
MS. MAYS: No, I am talking about the big report here.
MS. BREEN: I thought we were just talking about what we heard today and what we might want to --
MS. MAYS: Okay.
MS. BREEN: I think CHIS is -- we have some population based data for Native Hawaiians and other Pacific Islanders. It is CHIS. Nothing more about statute funded or anything more like that, nothing like that.
MS. MAYS: Okay, then I misunderstood. I thought you wanted it analyzed.
MS. BREEN: We have the data. It can be collected, it was collected. We have one example.
MR. HITCHCOCK: It can be exploited.
MS. MAYS: I get it. That is the business case. I thought you wanted us to analyze it, but the business case is, it has been done, it can be done, and it is a model for you to think about, that there can be a questionnaire translated, there can be all that kind of stuff.
MS. BREEN: I would do one other thing with those data, and that is, if there is adequate data to show health disparities in those communities along the lines that they described to us today, I would take advantage of that.
MS. MAYS: See, that is the only thing I am against.
MS. BREEN: Why? I will do the analysis.
MS. MAYS: I guess I am a little concerned, because we know there are problems with CHIS, in the sense of, those populations come from a list. They don't come from any kind of RDD.
MS. BREEN: Not for Native Hawaiians and other Pacific Islanders. They are not over-sampled. They are all RDD.
MR. HITCHCOCK: That doesn't bother me that much.
MS. BREEN: It was only some Asian populations that were over-sampled.
MS. MAYS: Then my objection is removed.
MS. BREEN: It would just be to illustrate that, you know, data can be collected, health disparities do exist, federal government should pay more attention, these people were right.
We only have anecdotes. I mean, we heard a lot of compelling testimony today, but that was their whole point, all we have are anecdotes to bring to you today. We can talk stories.
MS. MAYS: Then I am all for it. I was thinking it was the other. I think it actually would be very good to be able to show what the disparities are. If it comes from an RDD sample, then I am okay with it.
I want to go back to some recommendations that we have in that whole 60 that we have, because this may be where it goes.
We had a recommendation about NCHS or somebody needs to develop, for example, work in the area of better statistics for small groups.
This may be a place to highlight that. We keep saying that the threshold for this group is not large enough. Let's move that out and talk in here about the fact that someone -- again, it doesn't have to be just NCHS but someone needs to put more work into that, so that we can figure out --
MR. HITCHCOCK: That is consistent with a lot of recommendations from other groups, that NCHS should have an organizational unit like that, that works on small populations.
MR. LENGERICH: They said something about Healthy People 2010.
MR. HITCHCOCK: I advise not hanging our hats on either.
MS. MAYS: I know, I was so shocked when he said that, because everyone is trashing that.
MR. LENGERICH: I am not trashing that.
MS. BREEN: It isn't trashed where I work. I am not at as high a level than you are. I am not downtown.
MR. HITCHCOCK: You don't use the same men's room that I am.
MS. BREEN: Have you heard that, Debbie? What is your impression of that? Do you think Healthy People 2010 is not popular with this administration?
MS. JACKSON: I may not be at that same high level that Dale is either.
MS. MAYS: They just had this meeting called Healthier U.S. and they are trying to move away from -- this is what I understand.
MS. BREEN: I think those are just programs. They want publicity and they are talking about guidelines they want to emphasize. It is maybe a move away from the language.
MS. MAYS: You don't think that that is a move away from racial ethnic diversity? That is what is going around on the e mails and stuff.
MS. BREEN: Do you know why I don't?
MS. MAYS: Why?
MS. BREEN: Because NCI, Dr. Von Eschenbach, who is very close with the Bush Administration, has been asked to do a health disparities progress review group. So, we are doing one at NCI.
MR. HITCHCOCK: Health disparities, that concept is here. The office that runs Healthy People is in disarray. I mean, all sorts of key people have left that office. Claude Allen was deputy secretary of HHS and he is going to be a judge someplace.
MS. MAYS: Let's take your point of what we heard from Ignatius and try to figure out. It may not be that we exactly want to do Healthy People 2010, but the concept of what he was talking about, let's try and figure it out around this issue of data gaps.
Any other -- do you have any others? You have sure raised some great ones.
MS. BREEN: I think statistical methods for capturing small populations -- there must be a better term than that statistical one, but for collecting data on small populations, I think, is a good idea, but I also heard here some creative ways for collecting data.
Margie Kagawa-Singer, she used geocoding methods to figure out where there were thresholds of at least five percent of small populations in specific areas.
MS. MAYS: Asset mapping.
MS. BREEN: Then, from that you do, quota sampling? What was the kind of sampling? There is a whole little step-by-step methodology that I have seen used before. One of my colleagues did it in Detroit.
MS. MAYS: You pick these categories and you quota sample into the categories. I only know a little bit about it, but is partially what you do is -- because I wrote part of this in something else -- you try and map the community and you map the community in terms of its assets.
So, here is where all the clinics are, here is where all the people live. Then what you do is, you decide to hear from the people about the asset that you are concerned about which is how many service providers are there.
Then you come up with the different people that you want to hear from about that, once you have what the assets look like, and then they tell you, I don't go to that provider, even though he speaks Tongan. I go over here.
They were able then to determine who uses what services, what services -- even though on a map it would tell you, there are six people who speak Spanish, you find out, well, people only go to one person.
So, they quota sampled within what they think is the diversity of the group that they are trying to hear from, and then they do something else after that. That is as far as I know they are. I don't know the next part.
MS. BREEN: Then they survey. They survey them.
MS. MAYS: There are focus groups.
MS. BREEN: They sent out community health workers. They came back. They interviewed them. Then they had focus groups. Then they developed a survey. Then they administered the survey. I don't know if they did an intervention or what. We would probably be involved with that part.
I don't know if we could sort of like strip the data collection part out of that, or we could talk about that those kinds of programs can be used to also collect data on these populations which could then be used, you know, fed into systems, more than they are not, into like a federal surveillance system.
MR. HITCHCOCK: I think there is a need for technical assistance, too. I see a disconnect between the whiz kids we heard from on the first day and the people who are my age that we heard from today, the stories.
The way that these kids can manipulate the data, can gather and manipulate data, is very important.
MS. BREEN: In fact, there was a moment where that disconnect was apparent, it was shown to us. I had asked them if they were familiar with that group and they said, well, yes, but we don't have any census data, so they can't do anything with it.
It sounded like the whiz kids were limited to census data and some data sets that they were familiar with, and they could do anything with it, but given less stellar data --
MR. HITCHCOCK: I don't know if that is the case or not, but that was the impression that I got, too.
MS. MAYS: I think SSG only does -- that was why I was kind of whispering -- they only do the census data, and that is kind of their mandate.
That is why I was asking yesterday, if we give you other things, could you do it. I think, in a sense, they were going to go too far beyond that.
I think, to some extent, once you know how to do some of the files, you don't have to have -- it doesn't take rocket science to do cross tabs and all this other stuff. It is like having that Ask CHIS query system.
MR. HITCHCOCK: Who was it -- it was Margie who showed us the little geocoding example this morning about the Thai population.
MS. BREEN: That is what I was talking about, exactly that program, where you start out with the mapping. Then Vickie said it is asset mapping, because you are looking at the resources that are available to the community, and then you send the community health workers out, and then you interview them, and then you do focus groups, and then you send out people to do the survey.
MR. HITCHCOCK: I wonder whether these people are as data poor as they think they are and whether there are actually data sources.
MS. MAYS: In reality, so that you know, what it is that Marjorie did, it had to be done by Paul Ong's center. Paul Ong has collected lots of different data sets and he pulls them all together to be able to do it.
I don't think that what Paul did, that the kids would be able to do that, in some extent. I think it takes a center.
That is why I was trying to make some distinctions like, maybe there is a level where this person pulls this all together and then you go give it to the kids and then the kids do yet something else, and then they give it to some other group.
MR. HITCHCOCK: I am all in favor of that, because it seems like nationally it is going to be a hard time getting an effort like this off the ground for any population.
To the extent that we can bring groups together to facilitate collaboration between groups --
MS. MAYS: See, that would be a fascinating thing, would be to have a meeting where what you did was, you invited all the people. You have the consumers and then you have like the kids in the middle who are data crunchers -- but that is all they do, you give them a data set and they crunch it -- and then the people who do the creation, who design some of the software, who design and conceptualize how to do some of this.
It would be great to have these at these different levels. So, that may be a recommendation that we want to make, that somebody does this.
To me, that would be a great NIH -- the only reason I don't say NCHS is, they only are going to do it a certain way. We are talking about innovation. We will invite them.
MR. LENGERICH: You have the health statistics centers, or the excellence centers around the country, of the NCHS.
MS. BREEN: There is an idea.
MS. MAYS: What are those?
MS. BREEN: You mean like the University of Michigan or the University of Maryland?
MR. LENGERICH: I don't know, but they support centers of excellence for health statistics around the country.
MS. MAYS: They do?
MR. LENGERICH: Yes.
MS. MAYS: Oh, that is the minority --
MR. LENGERICH: No, not just minority. It is for health statistics. Health statistics excellence center.
MS. BREEN: Gene, can we find out where those are? I think leveraging existing resources is a very good way to go.
MS. MAYS: It sounds cool. I never knew they had those.
MS. JACKSON: They submit proposals for what they are doing in the centers.
MS. MAYS: They are funded by NCHS?
MS. JACKSON: Yes, by NCHS. I can get you information.
MS. MAYS: Okay, I thought it was the one started under the minority grants program by Lloyd Edwards, but this is obviously something else.
MS. BREEN: I wonder if there are any in California. Are there any in California? That is where the Asian and Pacific Islander populations are.
MR. LENGERICH: I think the commonality in what you are talking about is the developing methods for combining data collection from community groups with statistical mechanisms.
I saw that as kind of where we were heading with that. There are people on the ground who are jazzed about doing these kinds of things, and they could do that. That is a strength.
Us researchers would have concerns about the quality and the reliability. That needs to be addressed. So, I see it as a marriage of bringing together the people on the ground with the people who are disconnected, but can do jazzy things.
MS. MAYS: I agree, and what is nice is some of those are community groups that are building that capacity to do it. So, you know they are going to constantly disseminate. I think that is great.
MR. LENGERICH; I think the NCI SPNs, the special population networks, as far as at least in this case, are doing a fair job at bringing those kinds of things together.
MS. BREEN: In fact, the number of the women that were here the last talk, it turns out that there is Pacific Islander one that they didn't realize.
MS. MAYS: Pacific Islander one what?
MS. BREEN: Special population network. I knew there was one for Asians that Moon Chan runs and Margie is involved in, but June and some of the others were involved in one for Pacific Islanders.
MS. MAYS: As a matter of fact, I guess the other group that wants to have a connection with us is the Census Bureau has a group called the something on race and ethnicity. It is a working group, I guess, on work and ethnicity.
MS. BREEN: The one that Paul is on?
MS. MAYS: Yes, the one that Paul is on.
MS. BREEN: Good.
MS. MAYS: They have an Asian and then they separated it out also. So, they have the same thing where they have separated the Asian and the other group out.
In pulling this hearing together, I have talked to, as you can see, some of the past people who were here.
They just had a meeting in which they made several recommendations about the Native Hawaiian and other Pacific Islander populations that they want to share with us, and they want us to share things with them.
So, they are interested in trying to move this agenda forward, and they have, of course, very specific comments about census, but they also --
MS. BREEN: We were talking about census and possibilities with the census, and would it be possible to put any health-related questions on the census. I think we should be talking to people from the census, especially the American community survey.
MS. MAYS: They asked if it was possible to meet with us and I didn't know.
MS. BREEN: I think we should set that up.
MS. MAYS: We should try, maybe, when they are having their meeting to see if we could meet with them.
MR. HITCHCOCK: You know, another thing that came from today is the desire to really get good community-based data because of distrust that you would encounter if you were to try to survey a community.
I think that again tells me that it needs to be a local effort, that the federal government just cannot undertake surveys that are going to continually run into distrust in every little pocket that it goes in to survey. I don't know how you get around that, the politics.
What you were hearing today was, even with that outreach --
MS. MAYS: That was the first time, though. I think if the census continued to do that, and what you had was the local, that over time it would help the federal data collection in terms of NHIS and NHANES and everyone else, when they come in those communities.
I think it would be great if we recommend that the census do this major campaign every 10 years or whatever.
MR. HITCHCOCK: Ten years is a long time.
MS. MAYS: What I was thinking about also is the American Community Survey, if they did it relative to that, you would also have another time when they were doing something.
Then the community groups on this local level, the federal government does it on a local level, that they also do it. I mean, it was what, a million dollars?
MR. HITCHCOCK: I think it was more than that.
MS. MAYS: How much it cost for the campaign for the census.
MS. BREEN: I thought it was $2 billion.
MS. MAYS: $1 million, that is nothing.
MS. BREEN: This is a country they are targeting 380 million people now? I was thinking hard about that, because I was very struck by that, too, that on the one hand they wanted data. On the other, there was a sense of a need for people from within the community with whom they already had a trust relationship, to collect these data because they didn't want to tell it to other people.
Then, there was another bit of information that I thought was very helpful, and that was that they wanted to know why the data were being collected and they wanted to know what the purpose of the data was, and they wanted to know if the data would be fed back into the community.
MR. HITCHCOCK: Yes, they wanted the results.
MS. BREEN: So, if those things are made apparent or those things are part of the process, so that it is not just data collection, but it is data collection and return of those data, dissemination of those data back into the community, then it might be a friendlier effort.
I think particularly if people from the community were part of the data collection process, so you have native speakers, or you have people who are from the community, with an accent of that community, with the culture of that community, just having more of that, I think, would help to overcome some of the trust issues that they emphasized.
MR. HITCHCOCK: You could encounter privacy and confidentiality issues that way, potentially. I mean, you could have a neighbor asking another neighbor, how much was their income last year.
MS. BREEN: You are right, that is true. You don't want that.
MS. MAYS: I think you can get around it. I have done telephone as well as face to face interviews in L.A. County.
For instance, I have done them where we have done it specifically in South Central in the African American community.
We went and we got people from the Urban League, for example. We trained them. Some of them still now continue to be interviewers, but we trained them.
What we said was, if you encounter someone who -- I mean, we really talked to them about that. They were really good about pulling themselves out.
It was kind of like one of these things where, once they realized how important the data was, that they agreed.
What they did -- which really helped -- is that they went home and talked about it to everybody. So, we did great in terms of even the response, because they said, oh, i know somebody that works on that.
I think it really is very useful to think about maybe making a recommendation that, as surveys are done, that some percentage of the interviewers be from the community of the survey.
Depending upon how you do it, it is possible, especially if there are these centers of excellence -- if there are centers of excellence and they say, but we are doing it such and such, and say, well, can't you get two or three people from there to help to make calls or something, there are some ways to do it, but it has to be thought about, I think, creatively. Do you want to make that as a recommendation?
MS. BREEN: Yes.
MR. HITCHCOCK: How about getting information back to the community? I think that is important, too. Our Data Council working group on regionalizing data is starting to look into that a bit. We are just sort of mulling it over.
MS. BREEN: Have you had any ideas?
MR. HITCHCOCK: No, not really. They were talking about looking at it across the department, data collection efforts that do involve participation with community and feedback to the community.
I don't know. I am thinking of some of the NHLBI ones, for instance, like Jackson, Framingham.
MS. BREEN: Yes, they did some of that. The five cities, I think, did a lot.
MS. MAYS: Do you think that would be a good time to bring up the Ask CHIS query system where kind of as quick as possible data goes up and people can even go on line and get it?
MS. BREEN: I think so, and I think we shouldn't limit ourselves to that, but I think that is a good idea. That is kind of an intermediate. You know, the data should be available to researchers. It should be easily available --
MS. MAYS: See, the community groups and the kind of query system where data goes up and what you basically do is get cross tabs -- I can't remember how complicated it is.
MS. BREEN: You can ask questions, which is what they like about it, and then the data comes up. You sort of ask questions and fill in some blanks and then some tables come up that answer your questions. That is the idea.
As far as I know -- this is from feedback I have gotten from Jeff Luck, who runs that -- CDC was asking them to help them to develop a more user friendly version of their data system. So, I think it is state of the art.
Then the other thing that I think needs to happen -- maybe two other things -- getting the information back into the community through organizations in the community, and also getting the --
MS. MAYS: Yes, I remember you said the census, they got an embargo copy. I thought that was so cool. I was so jealous.
MS. BREEN: That, and of course, the way they got that information was by being part of the census network, being one of the data centers.
Then also, getting the information to providers, since this is health, or the infrastructure that serves or has to do, can promote health within the community.
MR. HITCHCOCK: Research into practice sort of thing. The sort of overriding point was this notion of disaggregating data. Everyone needs to be encouraged to collect it in a disaggregated form, so that it could be reported that way. It could be looked at over years that way.
MS. MAYS: Do we want to make a specific recommendation? I think it was BHRSS that this came up, that it is collected at the disaggregated level, but it is --
MS. BREEN: Aggregated before it goes to the fed.
MR. LENGERICH: I think we have to verify her statement to that effect, because I understand BRFSS is collected by the states, shipped exactly as it is to CDC, and the CDC is the one that is doing all the manipulation and aggregation and other things to it, and then it comes back. So, I don't think that that happens at the state level.
So, to get the disaggregated level, you have to go to individual states, to get that, I think, or to get their approval at least.
MS. MAYS: Do you know anybody at CDC you can ask?
MR. LENGERICH: Sure, but I think it is a prime example.
MS. BREEN: Lloyd Blackman?
MR. HITCHCOCK: I am thinking of Lloyd Cobe, or the woman who does the school -- Laura Kahn. I will call around and find out.
MS. JACKSON: I think yesterday they were talking about some kind of software program they were trying to update, so that it could come back. They were trying to update the program so it didn't have to smash it all into one.
MS. BREEN: Yes, they said that in the context of the new categories, and that they hadn't updated it yet, CDC hadn't done that. That was how it came up.
MR. LENGERICH: There are data on the web, but there are some additional variables on there, that you don't get county level information. You don't get data that has too few observations in the cell. You don't get state added questions. If your state is adding questions, then you don't get that. Then you have to go to the state to get it.
MS. MAYS: What other big areas?
MS. BREEN: I think that recommendation is really important, that the information should always come in a disaggregated form.
Then, as Dale said, you can pool it over years and at least you get five and 10 year reliable estimates. That is better than nothing.
MR. LENGERICH: I guess I would frame the -- what about framing the recommendation more that -- maybe we are nit picking here, but just that CDC, particularly, in this case, needs to make the data available in a disaggregate -- they need to facilitate the utilization of data for small cells as much as possible.
I guess I am always coming back to seeing us make recommendations to the feds, and that is the role they can play.
MS. MAYS: Okay, any other big ones that you all heard that you think we should think about?
MS. BREEN: Let me just review what Paul said. He and Margie really had big pictures on this.
MS. MAYS: Oh, can I ask you a question? The SEER data, do you all just decide, for example, where you are going to do SEER? Why is it that you have some places where -- I mean, cancer is the only place -- this happened with the Native Americans, you all should really feel proud, but your SEER data is really what is giving them a lot of data.
MS. BREEN: Well, all the data, even the ACS data for the different states, is based on SEER. What they do is, they take the SEER estimate and then, depending on the race, gender and age composition of the state, they estimate what the state's mortality and survival and incidence rates for cancer must be. So, all of it comes from SEER, actually. Mortality is not estimated, I take that back, but the rest is.
MR. LENGERICH: What about NPCR?
MS. BREEN: Those data are now available. Thank you for reminding me. CDC and NCI are beating their swords about that one.
CDC does all the places that SEER doesn't have, and SEER had an expansion a couple of years ago, where they had the Bay area and Los Angeles of California and, at that point, they expanded it to all of California.
MS. MAYS: I didn't realize that.
MS. BREEN: The other place that they expanded.
MR. LENGERICH: New Jersey and Kentucky and I think they are doing a special library in Alaska to pick up Alaska Natives.
MS. BREEN: They are. They are doing a special effort among Cherokee. They have a Native American Alaska Native network, research network.
The Asian Pacific Islanders, we are suggesting there should be that kind of thing with them. I asked afterwards if they were in touch with Brenda, and they said they are.
The reason SEER ended up being in some places, it evolved out of being a single registry which was in Connecticut. I don't know who started that Connecticut registry. It may have been that famous statistician who worked at NCI for a long time.
MR. LENGERICH: SEER now covers about 25 percent of the population of the country, and almost all the rest of the population is covered by state registries, which are coordinated through the NPCR.
MS. MAYS: What I was trying to figure out was whether or not there is any place for any of these groups of people, that there needs to be a recommendation for SEER. Is there any area in which --
MS. BREEN: Well, I think it wouldn't hurt to make a recommendation that SEER expand its registry capacity for Native Hawaiians and other Pacific Islanders, similar to what it has done for Alaska Natives.
MS. MAYS: Okay, so we don't have to say a place, just about people.
MR. LENGERICH: I guess the other advantage or the other area is that, particularly with NPCR now, the other thing that SEER does is, it collects follow up data. So, it follows cancer patients forever, whereas the NPCR data is just incidence.
MS. BREEN: Oh, it doesn't follow up?
MR. LENGERICH: No. I think the other piece that this NPCR program brings is that it is very close to 100 percent of all cancer patients.
MS. BREEN: Together they are.
MR. LENGERICH: No, each state has that. Each state is covered 100 percent.
MS. BREEN: A registry, by law, has to cover 100 percent of all cancer patients.
MR. LENGERICH: So, then, collecting data on every person with cancer in their state. So, that person is being recorded, the race, ethnicity, the residence is being recorded. It is not survey data. So, it has all of the advantages that mortality data has.
MR. HITCHCOCK: You can't over sample it.
MR. LENGERICH: It is a census. So, I guess the recommendation is to encourage NCPR states to utilize their cancer registries in ways to represent these small populations that will capture and report data on these small populations.
MS. BREEN: The other thing is, about that, is that they also need to be very careful that they are appropriately collecting data. The racial and ethnic data is good because that is one of the things, for example, in the SEER registry, New Mexico was really, really hard to figure out how to collect information on Latinos.
As a result, they have been a leader and have provided a lot of technical assistance to other SEERS on how to collect data on Hispanics and Latino.
Ditto, Hawaii, which has huge racial ethnic diversity in their population. So, they have worked real hard to figure out how to collect the different Asian groups. So, technical assistance has been used, based on those models.
MR. LENGERICH: That is a good point and, again, if we could frame this as a recommendation that CDC or HHS fund states to develop those methods to capture the quality data on their populations. Hawaii is a SEER state, as well. So, we need to be a little careful. People can come back and say, we are capturing it, at least, in the Native Hawaiians.
MS. MAYS: What I will do -- because this is really out of my area, you all are going to have to shape that -- is I have the gist of the recommendation. Any other?
MR. HITCHCOCK: Language translation. What do we say to that?
MS. BREEN: I think one of the other things we learned today and yesterday is how important it is for immigrant groups to have whatever it is, however you are trying to survey them or whatever, in their own language. So, translation is really important.
I don't know if we got a lot of tips on how to do that, but that it needs to be done should be a recommendation.
MS. MAYS: I was going to say, maybe what we ought to talk about is that small populations require translation and there shouldn't be this threshold.
The problem is they won't do it because of the threshold. So, then you just don't get them. I don't understand, with the technology that we have now, it should be that once it is done, you at least have a basic questionnaire to be able to use and improve upon. So, it shouldn't cost as much each time, unless there is no sharing.
MR. HITCHCOCk: You have got to change the English to accommodate the language that you are translating. We didn't really talk about that. You find as you go along that English just does not translate into a certain language.
MS. MAYS: No, what I was saying is, once -- say I do that in cancer. Is there not a way that that, to some extent -- I think we were talking about stuff on the web, you were talking about somebody's stuff and you said, we don't want all the copies, but maybe the federal government needs to think about -- at NIH there is a new data sharing initiative.
MS. BREEN: You mentioned that you are on this Data Council, isn't it, within the federal government to make sure that there isn't as much overlap and what not within HHS.
It has always struck me that, in sociodemographic questions, they are on all the surveys. They are on the CPS, they are on the NHIS, or on the NHANES or on the census. You know, you could translate them once and use them on all of them.
MS. MAYS: That is what I meant.
MS. BREEN: It is very cost effective.
MR. HITCHCOCK: A common core, yes.
MS. MAYS: The only difference would be that there are regional differences in how you ask some things, but I think in the demographics it shouldn't be that bad.
It would mean that you only have a little bit of translation cost, as opposed to starting from scratch each time.
MR. HITCHCOCK: That reminds me of something that Paul said here, talking about Paul's recommendations. He actually said he wanted more research on racial and ethnic identification.
He talked about encouraging the use of the ACS. He talked about improving the administrative collection of data, using administrative data, developing better sampling tools, better surname lists.
MS. MAYS: It is like clip and send that to me and we will put it in as recommendations.
MS. BREEN: I was going to say, I think that all of the recommendations that Margie gave, the recommendations that Paul gave, and other recommendations that people gave, I think we should sort of start with those as a list.
MS. MAYS: Do you have all of the presentations? I think she has everybody's.
MR. LENGERICH: There is a place for translation but isn't there also a place for the sharing, the posting, of variations to these surveys?
For example, we heard about the variations in socioeconomic status. It is not just how much income is coming in, but there is money that is going out and going home, and that it is inappropriate.
So, I think that if you had those kinds of things centrally located, that people who are dealing with immigrant populations who may be doing that sort of thing, then I think it would be a great benefit. Maybe that already exists in HHS or elsewhere.
MS. BREEN: I don't think it does.
MR. LENGERICH: I mean these extensions of survey information, of data information, questionnaires, through our traditional things that we all know how to do and have done 100 times, would be a great benefit. That is an example of that.
MS. MAYS: So, that is something we would ask NCHS to do?
MS. BREEN: I don't know who we would ask to do it. It is the kind of thing, it is a little too innovative for NCHS, I think.
MR. HITCHCOCK: Reynard has that workshop a couple of years back on measuring wealth. He is no longer there.
MR. BREEN: Maybe NIH could do it. Reynard is there now.
MR. HITCHCOCK: He was at NIH when he did this, I think, too.
MS. MAYS: As an investigator, you give me an RO1 and you tell me I have to put my stuff up and I haven't even had time to do my work?
MS. BREEN: No, what I was thinking was that NIH could just house this extensive web site which is sort of tips on collecting data on small populations.
MS. MAYS: Where are they going to get it?
MS. BREEN: That is not our problem, to figure that out.
MS. MAYS: Oh, okay.
MS. BREEN: I am just trying to think about what agency. I think about NIH, it does keep up more because it has got all these grantees.
MR. HITCHCOCK: Sort of survey tools.
MS. MAYS: That would be interesting, because they actually have tons of reports and stuff, and I don't think you can find it.
MS. BREEN: I think it would be a great idea, because the other thing that happens is that so much data is collected under grants from NIH, and it is like these one time pissy little -- excuse me, I know you are a big grant getter -- but one time pissy little questionnaires that never get repeated, nobody else repeats them, they don't get repeated over time because they are associated with a single grant.
You guys get money for being unique and different. Of course, you don't say, and I want to do it again next year.
MR. HITCHCOCK: Or they are associated with a small population that nobody else is interested in.
MS. BREEN: So, it is the opposite of NCHS in a certain sense. I don't think the requirement should be there, but the opportunity to standardize and get sort of the latest thinking from a whole pool of people would be excellent. Good idea, Eugene.
MR. LENGERICH: It may be you commission white papers or something like that.
MS. MAYS: I was just going to say, I have a suggestion that what you do is tell NIH to have an electronic journal. That is all anybody wants. They can have an electronic journal and then these things get put in there. It is very easy.
MS. BREEN: That is not a bad recommendation.
MS. MAYS: Then the researchers would be a lot better about putting it up there and it counts for what you all want us to make it count for, which is that it is published. It has some copyright to it, is actually what it is, too.
MR. LENGERICH: When we get into this NCI CDC issue, does NIH recognize as good enough the data that these community based groups are going to be involved in, and their research methods? Do we need to work more closely with NIH and their grant reviewing process?
MS. MAYS: It depends upon what part. For example, if you were to go to NIEHS right now, or NCI or Heart, Lung and Blood, they would be okay.
If you go to NIAID, they are going to run you crazy and say how you have to do venue sampling in those community groups. So, it is an institute --
MS. BREEN: No, it depends on the study section, is what it depends on, the decisions about who gets funded.
MS. MAYS: No, where you recognize it as being valuable. I think they vary. NIEHS has a mandate where they are pushing everybody to do community based, participatory research. So, I think they do, which is different than if you were to ask, I don't know, NICHD or NIAID.
MR. LENGERICH: I guess my question then is, if you are going to encourage communities to work with researchers to collect this data and support it, NIH particularly needs to appreciate the difficulties, the vagaries, the issues around all of that.
MS. MAYS: That is a study section issue, yes, I am sorry, I thought you meant, did they value it.
[Whereupon, at 5:10 p.m., the meeting was adjourned.]