August 23, 2004
Washington, D.C.
Good morning, everyone. It’s so great to see all of you here, and I’m just so pleased. It doesn’t feel like it’s been two years since we were here in this room, 2,100 of you. Thank you Steve, for that introduction, and thank you, Dr. Duke for taking the time to be with us this morning. The staff at the HIV/AIDS Bureau and the Ryan White community at large are grateful for your wise counsel on how to better serve underserved and vulnerable people who are living with HIV/AIDS disease. And we’re also glad that you delayed your vacation in order to be with us today, so thank you for that. All of you, the Ryan White CARE Act grantees and providers, thank you for coming to the bi-annual, all-titles grantee meeting.
And now I have the privilege of introducing a very special person. She has been with us before, and she is always a great support to this program. I’d like to introduce Ms. Jeanne White-Ginder. She’s the mother of Ryan White. I think the response of the audience shows the affection with which we hold you, and also the recognition that we are so grateful for the sacrifice that Ryan made, and we continue his legacy.
I’d now like to pause and recognize the people who put this meeting together, those people on the Executive Planning Committee, and the subcommittee members. It took a big group to put together a big meeting. Please join me in giving them a round of applause.
And now I certainly thank all of you for coming to Washington. Coming to Washington helps us to keep the costs down. That’s why we hold the meeting here, and it assures that many of our federal staff at HRSA and other federal agencies can attend. In this room today is almost the entire staff of the HIV/AIDS Bureau. We are here because we at HRSA are committed to strengthening our partnership with you, and we are here because it is vital for those of us working at the federal level to learn from you about what AIDS continues to do in communities across this country. I’m very proud to say that some of my colleagues at HRSA continue to volunteer in clinics and community-based organizations a few days each month. Their efforts bring a sense of what we are really working to achieve back to the Parklawn Building in Rockville. But this week is not about us, it’s about you. It’s about those of you who are in the community day in and day out, you who are doing the front-line work of caring for people who would not otherwise get the care that they need. My colleagues and I at HRSA honor your commitment and we honor you.
In the next four days, I think we all hope to hear a lot about what we must all do together to build a more productive and responsive CARE Act community. I think we all hope for real, honest, and un-sugarcoated discussion about the big issues that we face. You know what they are. Increasing AIDS prevalence, increasing costs, an ever-increasing change in environment and few new resources, all of which threaten our capacity to fulfill our mission. I want to talk about some of those challenges this morning. But before I move further into today, I wonder if we could do what we always do at this meeting, and what we must continue to do as long as AIDS is with us. I invite those of you who can to stand for a moment of silence to remember those who have died of AIDS, many of whom are honored on the panels in this hall and throughout the hotel.
You know, even when we do the work that you and I do, loss is a difficult subject, and it’s often difficult to discuss or even think about. It just never stops, and so we do what we can do to cope, but we must never allow ourselves and we must never allow our country to grow inured to what has been taken away from us by AIDS, and what continues to be taken -- someone’s mother, brother or sister, someone’s colleague or baby, someone’s father, and the love of someone’s life, more than 500,000 people in the United States alone. All of this loss, and today people tell us that much of the country has turned its attention to other problems. You’ve seen it in your own communities. It has affected your fundraising and your capacity to retain staff and volunteers. Many people seem to have moved on, not because they are mean or insensitive, but maybe because they suffer from a bad case of HIV-epidemic fatigue, maybe because they are focused on other frightening problems facing America. There is no doubt that some have moved on because they are misinformed. I wonder how many of us have had the experience of encountering someone who is under the false impression that we’ve pretty much beaten AIDS in the United States. We know that’s not true. In communities across this country like the one in which you serve, we need to be more aware of where we’ve been with AIDS and where we are today. We need to know about the 16,300 people who died from AIDS, not in 1996, or in 1994, but in 2002, six years after the introduction of HAART. We need to teach those who have been seduced by the theory that it certainly won’t happen to me. Yet more than 40,000 people continue to become infected with HIV every year. And when you and I think about this, and perhaps become daunted by it, we need to stop for a moment, look at our collective selves in the mirror and remind ourselves of the marvelous power that lies in doing what’s right. Because the nation did what is right when it enacted the Ryan White CARE Act, we’ve come a very, very long way. Think of all the primary care visits we’ve provided, and all the treatments we’ve given. Think of the case managers and social workers and counselors and volunteers. Think of the technicians and the nurses and the doctors. Think of all the communities that have forged the collaborative response to AIDS. And then think of the results.
AIDS mortality has declined steeply. People are living longer, healthier lives. And because of Ryan White, these benefits have come not just to the rich, but also to people who are economically disadvantaged.
When someone asks you about the accomplishments of the Ryan White CARE Act, tell it like it is. Tell them this: Had it not been for Ryan White funds, there wouldn’t have been anyone to write prescriptions for many of the nation’s uninsured. There would have been no one to provide counseling or link clients with the possibility of a decent meal. There would have been no CARE Act, and there would be very little comprehensive primary care for people living with HIV. There are those who’ve said, and still say we can’t build comprehensive systems of care, but we have. There are some who’ve said and who still say that consumers can’t be true partners in their own care, but we know that they are. There are others who say that medicine has to be driven by profits. They say that we can’t address unmet need in underserved communities. But we have, we are, and we will continue to do so, thanks in large part to you. By tackling the challenge of unmet needs, the Ryan White community has found communities and populations who weren’t being served, and now we’re serving them. Through implementing a practical and quality improvement program, we are insuring that even the poor get the high-quality care that they deserve. By continuing to build capacity in minority communities, we are giving people a place to go for care in the communities where they live.
When you think about what has been accomplished in fighting AIDS in America, the real miracle is not that the nation has brought the power of science and caring to the privately insured, it is that through the Ryan White CARE Act, it has brought comprehensive HIV/AIDS care to people who would not otherwise have been able to get it. Look at the numbers. We are reaching those that no one else reaches. Fifty percent of our clients live below the federal poverty line. More than 90 percent have no private health insurance. Almost two-thirds are racial and ethnic minorities. And though some continue to castigate the CARE Act for being essentially a social program, more than anything else, we’re providing primary health care. Yes, we proudly provide the support services that make health care possible, and we wish that we could provide more. But get this, we estimate that Ryan White clients are almost four times more likely to come to us for medical than for any other service, except case management.
Now let me take a moment to tell you why we can finally make that estimate. You know what I’m going to say. It’s because of a project called the CARE Act Data Report, also known as CADR. Remember, CADR, all those pesky little forms that we bug you about? Well, we really do something with those data that you submit. The numbers we received from you are helping to create an accurate picture of the clients and services today, rather than one based on supposition. All of you know, I realize, that on the federal level we are living in a data-driven environment. And as a community, we are still not where we should be, especially in terms of being able to measure outcomes. But while you are here this week, I hope you will pick up one of our publications on CADR, and I think you will be pleased to see how far we’ve come. I also hope you will pick up a copy of our progress report which includes some of the CADR data, and discusses the program and where we need to go. I hope you will take the report and use it to educate your colleagues, your funders, and your community.
This week you will have the opportunity to learn what’s going on with the reauthorization process. That’s coming up next year. There will also be presentations about improving quality and planning. There will be sessions that can help you improve your efficiency and your productivity. And there will be formal and spirited discussions in the halls and over coffee, and all of this will allow us to form more meaningful partnerships on behalf of people living with HIV and AIDS. All of us must take every opportunity we encounter this week to learn from each other and with each other, because the fact is, in the 15th year of the Ryan White CARE Act, we still face a challenging HIV and AIDS prevention and care landscape, and we must all equip ourselves to the greatest extent possible with the knowledge and skills necessary for dealing with the challenges it poses.
For example, HIV prevalence is growing and has now probably reached over one million in the United States. Today there aren’t fewer people living with HIV and AIDS in the U.S. than there were five years ago, there are more. In fact, more people are living with HIV disease in the United States than ever before. How are we going to reach them? Despite measures taken to improve access to treatment there continues to be enormous pressure on the AIDS Drug Assistance Program. How are we going to cope with skyrocketing costs in a climate of growing demand and level funding for care? Hundreds of thousands of people living with HIV disease aren’t receiving appropriate care, many of them for the simple reason that they do not know that they are walking around with this communicable, deadly disease. What can we do differently to address this problem, which has been with us now for a very long time? The aging of the HIV-infected population is increasing demand for primary care services. We have been addressing HIV/AIDS and co-morbidities commonly associated with AIDS for a long time. How can we prepare ourselves to address conditions associated with this aging process? To assume that the government will provide an abundance of new resources in support of AIDS care is optimistic. But how can we ensure that every dollar we have goes as far as it possibly can? If you take all of these issues together and others I didn’t even mention here, you can summarize the AIDS care landscape this way. There is increasing demand for CARE Act services in a climate of health care inflation and level funding for care.
So having said that, what are we going to do about it? Well, I don’t think it would be of much help to you to stand up here this morning and say that all we have to do is be optimistic and work hard. We’re already doing that. It is true that we have never had more to offer people living with HIV disease, but it is also true that the need and the costs are rising. Moreover, we may be standing at the threshold of an increase in need for these services. Consider, for example, the implications of fulfilling our goal of reaching all of those who are not yet in care. Each one of us needs to hope, pray, and then roll up our sleeves and do everything in our power to make sure that the Advancing HIV Prevention Initiative works. If you don’t know what that is, there’s a session on that later in this conference. But what if it does work? What if we successfully reach even half of the 300,000 people believed to be HIV-positive but unaware of their serostatus? Evidence suggests that many of them are uninsured and economically disadvantaged. Are we positioned to provide the healthcare that they will need? Where will we find the resources to do so?
I would like to take this opportunity to outline some of the key principles that can help give us a framework for moving into the future and providing services in the context of increasing need. None of these is a panacea for the inter-related challenges that lie on the horizon, but they represent opportunities for becoming a more productive, efficient and effective community.
First, we must become more effective at connecting with populations in underserved communities. Today the CARE Act client base generally reflects the demographics of the epidemic, but that didn’t just happen. It happened because of the needs assessments that you conducted. It happened because of your cultural competency and it happened because of your outreach efforts. It happened because of your linkages with key points of entry into the medical system. Even so, we continue to miss people. If the statistics are correct, we’re missing lots of people. We have to do better. We need more churches, mosques and synagogues involved. We need more schools involved, more community groups and volunteers, more community-based organizations. The core of AIDS-prevention and care communities has made much progress in building partnerships in the community. But we need more partners, many more partners if we are going to reach the underserved populations.
Second, the “E” in the acronym of CARE does not stand for entitlement. It stands for emergency. Let me repeat that. In the Ryan White CARE Act, the E stands for emergency, not entitlement. Unlike Social Security or Medicaid, the money is not automatically there simply because we meet a particular set of criteria. The CARE Act is a discretionary funding program. That means there is positively nothing in the legislation that obligates funds for the program. Therefore we have to make sure that we link people with non-CARE Act programs when they are eligible and use our limited resources to help those who have nowhere else to turn. That’s what we mean when we say the Ryan White CARE Act is the payer of last resort.
Third, we must strongly urge other providers that are not funded through the Ryan White CARE Act program to do their fair share about AIDS. We need a nation of shared responsibility. We need a nation where AIDS is clearly on the radar screen at the federal, state and local levels. In a world of skyrocketing healthcare costs and growing need, we must broaden the coalition of organizations addressing AIDS in the
United States. The CARE Act community is committed to shouldering the responsibility for caring for people living with HIV and AIDS. Indeed, we are honored to do so, but we cannot shoulder the responsibility of other health care providers. Yet, too often, organizations like yours are called on to deliver care that could be and should be provided by others in the community. Only by building a broad coalition can the nation reach everyone not in care and ensure access to services. It’s often not a question of not enough resources; it’s a question of not enough partners, not enough players.
Fourth, we must continue to prioritize delivery of primary care services and ensure access to medications at the best possible price. Now you and I know that access to some support services is associated with increased utilization of primary care. We must continue to provide those services, for they are absolutely essential. But it is primary care itself that harnesses the power of today’s AIDS science. Without primary care that provides access to the best available treatment, we would not have seen the dramatic reductions in perinatal transmission and the reductions in AIDS mortality.
Fifth, the CARE Act community must do everything we can to prevent new infections. You in the community have been telling the federal government that the disconnect between prevention and care does not make sense. We get it. We agree with you. For far too long, HIV care and HIV prevention have been seen as two distinct sets of services. We must finally see the integration of HIV prevention services into primary care. And I don’t mean just primary care paid for with Ryan White dollars. I mean all primary care. Certainly the public health community has always known that primary care includes a disease prevention component. Lack of access to this kind of primary care is, for our society, our nation and our world a lost opportunity to prevent all kinds of diseases and adverse conditions, including HIV infection. As a community of individuals working to address AIDS we must become active, vociferous advocates for the integration of prevention into primary care. If we are successful, we will reduce the number of undiagnosed infections, and prevent untold new ones.
When we think of all the challenges we face, I think that we can all agree here this morning that there is perhaps one challenge greater than any other. We’ve been working on it; we’ve allocated a large portion of our total resources to addressing it. We’ve made some progress, but we haven’t made nearly enough. I’m talking about the devastation of AIDS among minorities in this country. Yes, 65 percent of CARE Act clients are minorities, and with help from programs like the Minority AIDS Initiative, we’ve been able to expand capacity in minority communities and fund minority-serving providers that otherwise would have received less funding or none at all. But we cannot rest. National data and voices from the community tell us that we have miles and miles to go.
More than 40 percent of the people living with AIDS in the
United States were African American in 2002, although African Americans accounted for just 12 percent of the
U.S. population. In the same year, approximately 20 percent of the people living with AIDS in the
U.S. were Hispanic. All told, more than two thirds of the people living with HIV, living with AIDS in the
United States were racial and ethnic minorities. That’s up from 61 percent in 1998. In 2002, seven of every ten people who died from AIDS were racial or ethnic minorities, as were seven of every ten people diagnosed with the disease. We are never going to reduce these numbers and the toll of AIDS among minorities until we have acknowledged and successfully dealt with the range of interrelated social problems that fuel the epidemic, problems like poverty, and lack of economic and educational opportunities, problems that themselves fuel substance abuse, addiction and crime. These are problems that are too big for the Ryan White system alone, but we must do what we can do.
I’ve been working at the federal level to provide services to people living with HIV and AIDS for more than 10 years now. During that time, I’ve learned a lot from people like you in the community, as well as from my colleagues. I’ve also learned a lot about HIV disease itself, and about why those of us who have been blessed to be called to this work are here. We’re here because HIV/AIDS is a disease that is always indifferent to personal struggle. We’re here because HIV/AIDS shows no mercy to the vulnerable and no pity to the disadvantaged. We are here because HIV/AIDS shows no compassion to those least able to fight it and because it provides no pass to those who don’t know about it. Let our colleagues, our communities and our country know that we are here because providing health care to people living with HIV disease who don’t happen to have any money is the moral thing to do, and because our hearts demand of us that we do it. And finally, to quote the phrase that was coined by AIDS Action some years ago
-- Let those whom we serve know and those who we hope to serve in the future know that we are here standing with them until it’s over. Thank you.