<DOC>
[109th Congress House Hearings]
[From the U.S. Government Printing Office via GPO Access]
[DOCID: f:28656.wais]
REAUTHORIZING THE RYAN WHITE
CARE ACT: HOW TO IMPROVE
THE PROGRAM TO ENSURE
ACCESS TO CARE
HEARING
BEFORE THE
SUBCOMMITTEE ON HEALTH
OF THE
COMMITTEE ON ENERGY AND
COMMERCE
HOUSE OF REPRESENTATIVES
ONE HUNDRED NINTH CONGRESS
SECOND SESSION
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APRIL 27, 2006
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Serial No. 109-88
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Printed for the use of the Committee on Energy and Commerce
Available via the World Wide Web: http://www.access.gpo.gov/congress/house
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U.S. GOVERNMENT PRINTING OFFICE
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COMMITTEE ON ENERGY AND COMMERCE
JOE BARTON, Texas, Chairman
RALPH M. HALL, Texas JOHN D. DINGELL, Michigan
MICHAEL BILIRAKIS, Florida Ranking Member
Vice Chairman HENRY A. WAXMAN, California
FRED UPTON, Michigan EDWARD J. MARKEY, Massachusetts
CLIFF STEARNS, Florida RICK BOUCHER, Virginia
PAUL E. GILLMOR, Ohio EDOLPHUS TOWNS, New York
NATHAN DEAL, Georgia FRANK PALLONE, JR., New Jersey
ED WHITFIELD, Kentucky SHERROD BROWN, Ohio
CHARLIE NORWOOD, Georgia BART GORDON, Tennessee
BARBARA CUBIN, Wyoming BOBBY L. RUSH, Illinois
JOHN SHIMKUS, Illinois ANNA G. ESHOO, California
HEATHER WILSON, New Mexico BART STUPAK, Michigan
JOHN B. SHADEGG, Arizona ELIOT L. ENGEL, New York
CHARLES W. "CHIP" PICKERING, Mississippi ALBERT R. WYNN, Maryland
Vice Chairman GENE GREEN, Texas
VITO FOSSELLA, New York TED STRICKLAND, Ohio
ROY BLUNT, Missouri DIANA DEGETTE, Colorado
STEVE BUYER, Indiana LOIS CAPPS, California
GEORGE RADANOVICH, California MIKE DOYLE, Pennsylvania
CHARLES F. BASS, New Hampshire TOM ALLEN, Maine
JOSEPH R. PITTS, Pennsylvania JIM DAVIS, Florida
MARY BONO, California JAN SCHAKOWSKY, Illinois
GREG WALDEN, Oregon HILDA L. SOLIS, California
LEE TERRY, Nebraska CHARLES A. GONZALEZ, Texas
MIKE FERGUSON, New Jersey JAY INSLEE, Washington
MIKE ROGERS, Michigan TAMMY BALDWIN, Wisconsin
C.L. "BUTCH" OTTER, Idaho MIKE ROSS, Arkansas
SUE MYRICK, North Carolina
JOHN SULLIVAN, Oklahoma
TIM MURPHY, Pennsylvania
MICHAEL C. BURGESS, Texas
MARSHA BLACKBURN, Tennessee
BUD ALBRIGHT, Staff Director
DAVID CAVICKE, General Counsel
REID P. F. STUNTZ, Minority Staff Director and Chief Counsel
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SUBCOMMITTEE ON HEALTH
NATHAN DEAL, Georgia, Chairman
RALPH M. HALL, Texas SHERROD BROWN, Ohio
MICHAEL BILIRAKIS, Florida Ranking Member
FRED UPTON, Michigan HENRY A. WAXMAN, California
PAUL E. GILLMOR, Ohio EDOLPHUS TOWNS, New York
CHARLIE NORWOOD, Georgia FRANK PALLONE, JR., New Jersey
BARBARA CUBIN, Wyoming BART GORDON, Tennessee
JOHN SHIMKUS, Illinois BOBBY L. RUSH, Illinois
JOHN B. SHADEGG, Arizona ANNA G. ESHOO, California
CHARLES W. "CHIP" PICKERING, Mississippi GENE GREEN, Texas
STEVE BUYER, Indiana TED STRICKLAND, Ohio
JOSEPH R. PITTS, Pennsylvania DIANA DEGETTE, Colorado
MARY BONO, California LOIS CAPPS, California
MIKE FERGUSON, New Jersey TOM ALLEN, Maine
MIKE ROGERS, Michigan JIM DAVIS, Florida
SUE MYRICK, North Carolina TAMMY BALDWIN, Wisconsin
MICHAEL C. BURGESS, Texas JOHN D. DINGELL, Michigan
JOE BARTON, Texas (EX OFFICIO)
(EX OFFICIO)
CONTENTS
Page
Testimony of:
Duke, Dr. Elizabeth M., Administrator, Health Resources and Services
Administration, U.S. Department of Health and Human Services 17
Fenton, Dr. Kevin, Director, National Center for HIV, STD, and TB
Prevention, Centers for Disease Control and Prevention, U.S.
Department of Health and Human Services 22
Crosse, Marcia, Director, Health Care, U.S. General Accountability
Office 29
Additional material submitted for the record:
Duke, Dr. Elizabeth M., Administrator, Health Resources and Services
Administration, U.S. Department of Health and Human Services,
response for the record 90
Fenton, Dr. Kevin, Director, National Center for HIV, STD, and TB
Prevention, Centers for Disease Control and Prevention, U.S.
Department of Health and Human Services, response for the record 94
REAUTHORIZING THE RYAN WHITE
CARE ACT: HOW TO IMPROVE
THE PROGRAM TO ENSURE
ACCESS TO CARE
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THURSDAY, APRIL 27, 2006
HOUSE OF REPRESENTATIVES,
COMMITTEE ON ENERGY AND COMMERCE,
SUBCOMMITTEE ON HEALTH,
Washington, DC.
The subcommittee met, pursuant to notice, at 9:05 a.m., in Room
2123 of the Rayburn House Office Building, Hon. Nathan Deal
(chairman) presiding.
Members present: Representatives Upton, Norwood, Shimkus, Pitts,
Bono, Ferguson, Burgess, Barton (ex-officio), Brown, Waxman, Towns,
Pallone, Rush, Eshoo, Strickland, Capps, Baldwin and Deal.
Staff present: David Rosenfeld, Acting Chief Health Counsel;
Katherine Martin, Professional Staff Member; Melissa Bartlett, Counsel;
Brandon Clark, Policy Coordinator; Chad Grant, Legislative Clerk; John
Ford, Minority Counsel; and Jessica McNiece, Minority Research
Assistant.
MR. DEAL. I will call the subcommittee to order and recognize
myself for an opening statement.
I am proud to say that once again, in the tradition of this
subcommittee, we have an outstanding and distinguished expert panel of
witnesses to testify today and to help us explore and examine the current
implementation of the Ryan White program, and how to best improve the
program as the committee considers the issue of reauthorization. While
this panel consists of expert witnesses from within the Federal
government, I would say to other stakeholders that we intend to have a
roundtable discussion at a later time where members of the committee
and other stakeholders will be invited to attend, because I believe that it
is important for us to hear from as many interested parties as possible.
The Ryan White CARE Act was first authorized in 1990 and was
reauthorized in 1996 and in 2000. Although the legislative authority
expired on September the 30th of last year, the program continues to
operate at its current funding level. The outcomes and treatments for
HIV and AIDS have changed over the years, and so have the needs of
those who suffer from the disease. For example, persons with HIV, of
course, now live longer due to advances in drug therapies.
The President's fiscal year 2007 budget requests $2.2 billion for
Ryan White activities, which is $95 million above last year's budget
request. There are a number of additional Federal programs that also
assist with the care and support for persons with HIV/AIDS. However,
the Ryan White program is the only major Federal disease-specific
comprehensive treatment program. Additionally, Ryan White providers
currently use Federal funds without any limitation to provide non-
treatment services for persons with HIV and AIDS. These include
services not covered for Medicare or Medicaid beneficiaries, including
buddy and companion services, health education, treatment adherence
and counseling, and housing assistance.
During both the 2005 and 2006 State of the Union addresses,
President Bush called for the reauthorization of the Ryan White CARE
Act. Last summer, the President set forth a series of reauthorization
principles for this program. These principles retain the basic funding
structure, but called for altering the titles to reflect the overarching
principle that Ryan White funds be used for prevention and to provide
care and treatment to persons with HIV/AIDS. Specifically, the
President's principles include: one, serve the neediest first; two, focus on
lifesaving and life-extending services; three, increase prevention efforts;
four, increase accountability; and five, increase flexibility. It is my
sincere hope that we can improve the Ryan White program with this
reauthorization opportunity, and ultimately improve outcomes for those
who are suffering from this disease.
Again, I welcome our witnesses that I will introduce in a few
minutes, and thank them for their participation.
[The prepared statement of Hon. Nathan Deal follows:]
PREPARED STATEMENT OF THE HON. NATHAN DEAL, CHAIRMAN, SUBCOMMITTEE ON
HEALTH
The Committee will come to order, and the Chair recognizes himself
for an opening statement.
I am proud to say that we have a distinguished and expert panel of
witnesses appearing before us today that will help us examine the current
implementation of the Ryan White program and how to best improve the program
as the Committee considers reauthorization. While this panel consists of
expert witnesses from within the Federal Government, this Subcommittee
intends to have a roundtable discussion at a later date where Members and
stakeholders will be invited to attend because we believe it is important to
hear from as many interested parties as possible.
The Ryan White CARE Act was first authorized in 1990 and was
reauthorized in 1996 and 2000. Although the legislative authority expired
on September 30, 2005, the program continues to operate at its current
funding level. The outcomes and treatments for HIV and AIDS have changed
over the years and so have the needs of those with the disease. For
example, persons with HIV now live longer due to advances in drug
therapies.
The President's Fiscal Year 2007 Budget requests $2.2 billion for
Ryan White activities, which is $95 million above last year's budget request.
There are a number of additional Federal programs that also assist with the
care and support for persons with HIV/AIDS. However, the Ryan White program
is the only major federal disease-specific comprehensive treatment program.
Additionally, Ryan White providers currently use Federal funds without any
limitation to provide non-treatment services for persons with HIV and AIDS.
These include services not covered for Medicare or Medicaid beneficiaries,
including:
o Buddy and companion services
o Health education
o Treatment adherence and counseling
o Housing assistance
During both the 2005 and 2006 State of the Union Addresses,
President Bush called for the reauthorization of the Ryan White CARE Act,
and last summer, the President set forth a series of reauthorization
principles for this program. These principles retain the basic funding
structure, but call for altering the titles to reflect the overarching
principle that Ryan White funds be used for prevention and to provide care
and treatment to persons with HIV/AIDS. Specifically, the President's
principles include:
1. Serve the neediest first
2. Focus on life-saving and life-extending services
3. Increase prevention efforts
4. Increase accountability
5. Increase flexibility
It is my sincere hope that we can improve the Ryan White program
with this reauthorization opportunity and ultimately improve outcomes for
those who are suffering from this disease.
Again, I welcome our witnesses and thank them for their
participation.
I now recognize the Ranking Member of the Subcommittee, Mr. Brown
from Ohio, for five minutes for his opening statement.
MR. DEAL. It is now my pleasure to recognize my friend, the
Ranking Member of the subcommittee, Mr. Brown from Ohio for his
opening statement.
MR. BROWN. Thank you, Mr. Chairman, and thank you for holding
this hearing. I would just like to offer special thanks to my friend Mr.
Waxman for all he has done over the years on all kinds of issues, but
especially what he has done on Ryan White.
I was a bit frustrated to hear that our guest list today does not
include any individuals who actually rely on the CARE Act or any patient
advocates. I am pleased that the Chairman has agreed to a follow-up
roundtable where we can hear from these individuals, but their absence at
this hearing, I believe, compromises its value. I urge the Chairman to
convene the roundtable right away. These advocates deserve the same
forum as the Administration and the same opportunity to have their
voices heard as we move forward with efforts to reauthorize the CARE
Act.
We made great progress in the last decade to educate the public
about HIV and AIDS, to increase testing levels, to chip away at the
stigma associated with infection, and to develop better treatment and
standards of care, but clearly, much more needs to be done. Tens of
thousands of Americans are newly infected with HIV every year. An
estimated half of those infected are not receiving the treatment they need.
We know there are at least 14,000 people in my State alone with
HIV/AIDS. The State estimates that there are thousands more who are
infected but who are unaware of their status.
In just a single year, Ohio medical providers diagnosed almost 1,000
new cases. Many of them would have no source of care were it not for
the Ryan White CARE Act. More than 15 years after its enactment,
Ryan White continues to be a vital tool in our Nation's arsenal to stop the
spread of HIV. The Act honors Ryan White, as we know, a courageous
young man who did so much to spark the fight against HIV/AIDS before
it took his life.
The CARE Act provides funding and access to quality medical
treatment and services without which thousands of Americans would be
unable to manage this disease. The Act serves the neediest among us,
over 570,000 Americans who have nowhere else to turn for the
treatments that can change AIDS from a death sentence to a manageable
condition.
I represent a Congressional district that is part of the only Title I
eligible metropolitan area in Ohio. I have seen firsthand how
indispensable the CARE Act is. We have an opportunity to reauthorize
the program and renew our commitment to its future. We also have an
opportunity to improve it, to figure out what is working and what is not
working. We should consider whether there are inequities in the system,
but we should not take needed care away from one population in order to
give it to another. It is in our Nation's best interest and it is within our
Nation's capabilities to help all those in need, whether they live in an
urban area or rural area, or somewhere in between. Beneficiaries should
continue to have access to the mutually reinforcing comprehensive set of
services, both medical and support services, that they need to treat their
conditions and to live long and productive lives. States should have
flexibility in determining what services are needed most in their
communities.
Let us make sure, Mr. Chairman, that the Act gets adequately funded
and that we fix administrative loopholes that have allowed unused funds
to revert back to the Treasury at the same time that States have been
forced to create waiting lists for care. I am encouraged by the
communication between Members on both sides of the aisle to
reauthorize the CARE Act. I hope this communication continues to
move us towards developing a bipartisan proposal we can all support.
Our Nation has lost too many talented young men and women to this
epidemic we have been battling, HIV/AIDS, for more than a quarter
century. We have made progress, but this fight is far from over. Let us
make the CARE Act stronger and better so that we can continue to
provide opportunity and hope for thousands of Americans living with
HIV/AIDS.
Mr. Chairman, thank you.
MR. DEAL. I thank the gentleman. I am pleased to recognize my
colleague from Georgia, Dr. Norwood, for an opening statement.
MR. NORWOOD. Thank you very much, Mr. Chairman.
The Ryan White CARE Act probably isn't on the minds of most
Americans this morning. However, this reauthorization, in my opinion,
could be one of the most important pieces of legislation this committee is
going to look at this year.
Not many people know what the CARE Act is, and I can probably
count most of my colleagues amongst that group. But for the HIV/AIDS
patients, it helps, and the cost it takes off of our State's Medicaid
programs is essential.
Ryan White was a 13-year-old hemophiliac who was infected with
HIV through a blood transfusion. While Ryan lost his battle many years
ago, we must not forget how far we have come over the years.
Mr. Chairman, the face of AIDS has changed and the CARE Act
must change with it. This change will not be easy, but we have to face
the uncomfortable fact that we simply don't have unlimited funds. That
means as drug therapies become even more important, we will be locked
in a battle over limited resources. The CARE Act does not currently
cover important medical care and where it does provide care, for
example, like dental, it falls far short of where it needs to be. Personally,
I do not believe in these titles, that they are holy and can't be changed,
but I understand many folks want to protect those States that have
succeeded. What about the States that have not succeeded under this
Act? HIV infections are increasing in the South. One of the major
infection strains is right up the I-95 corridor, right through the heart of
my State. Congress has the opportunity to provide a better healthcare
delivery system moving from a palliative care model to a blended
chronic care model that recognizes HIV as an increasingly manageable
disease.
We also should put the focus on HIV and AIDS cases equally.
States and communities receive funding based on AIDS patients. That is
wrong and creates the worst of incentives. The money needs to follow
the infections. The days of defending Title I cities, protecting them in
statute must end, and the money needs to go to the patients. This issue is
essential in my home State of Georgia, among minorities, and in those in
rural areas. No one should receive the short end of the stick because of
where they live. If we really care about this population, we are going to
have to focus on patients and make sure the CARE Act we create today
will meet the challenges of tomorrow.
Thank you very much, Mr. Chairman, for having this hearing.
MR. DEAL. I thank the gentleman. I am now pleased to recognize
the gentlelady from California, Ms. Capps, for an opening statement.
MS. CAPPS. I hesitate because Ms. Bono was here before me.
MR. DEAL. I will be pleased to recognize Ms. Bono because she was
here first, but I was told to recognize you first since you had a time
constraint.
MS. CAPPS. Thank you very much. Mr. Chairman, I am pleased that
this subcommittee is meeting on this subject. I thank our panelists for
being here today. There are a number of very important and very timely
issues about which we need to make decisions very quickly, and we need
your guidance and your expertise.
The reauthorization of the Ryan White CARE Act is a very critical
condition and a very critical issue for this committee, the HIV/AIDS
community, and indeed, our entire country. Today, I hope we can focus
on how we can strengthen the CARE Act so it continues to meet the
health needs of persons living with HIV disease and their families.
This issue is especially important in the State that Mr. Waxman, Ms.
Eshoo, and I represent, California, which has the second largest disease
burden in the United States with 14 percent of AIDS cases. I am
particularly concerned that the current CARE Act law states that by
October 1 of this year, all States, territories, and jurisdictions must
submit names-based HIV data to the CDC. The CDC has stated that in
order to accept HIV data by October 1, they need to certify that a State
had a mature system by January 2006. However, the California
Governor signed the HIV names-based data collection system into law
just last week, and California's system will not be certified in time. The
October 1 deadline does not allow our State adequate transition time.
According to the February 2006 GAO report, this would penalize almost
20 jurisdictions who do not fall under CDC's definition of an accurate
and reliable names-based reporting system.
I am interested to hear from the panelists today about how we can
work together to ensure that the approximately 42,000 members of
California's HIV community continue to receive healthcare and support
services. I look forward to hearing your testimony, and I yield back the
balance of my time.
MR. DEAL. I thank the gentlelady. I recognize my friend from
Illinois, Mr. Shimkus, for an opening statement.
MR. SHIMKUS. Thank you, Mr. Chairman. I will just reserve my
time for questions.
MR. DEAL. I recognize Mr. Upton for an opening statement.
MR. UPTON. Well, thank you. I have an opening statement and I
will just insert it in the record. I support the reauthorization of this
important bill and I look forward to the testimony this morning.
[The prepared statement of Hon. Fred Upton follows:]
PREPARED STATEMENT OF THE HON. FRED UPTON, A REPRESENTATIVE IN CONGRESS FROM
THE STATE OF MICHIGAN
Mr. Chairman, thank you for holding today's hearing, an important
step in moving forward with the reauthorization of the Ryan White CARE Act.
For the estimated 16,200 people in Michigan who are HIV positive, the 11,320
people known to be living with HIV and AIDS, and the 5,774 who are known to
be living with full-blown AIDS, this program is a vital source of health
care, prescription assistance, and community support services.
The HIV/AIDS epidemic has changed greatly since it emerged in the
early 80s. Infection was once a death sentence. Today, HIV for many has
become a chronic disease, kept in check through access to quality health
care, supportive services, and life-saving medications. The face and
geography of the epidemic have changed as well. Today, it is rising most
rapidly in our minority communities, and particularly among African-American
women, and in our Southern states. We need to ensure that the Ryan White
CARE Act has the flexibility to respond to the changing nature of the
HIV/AIDS epidemic, and I look forward to working with you and with my
colleagues on both sides of the aisle to reauthorize and update this
program.
MR. DEAL. I would recognize Ms. Baldwin for an opening
statement.
MS. BALDWIN. Thank you, Mr. Chairman. Thank you to the
witnesses, also, who are joining us here today.
I am glad that the committee is taking up the reauthorization of the
Ryan White CARE Act. This program is clearly vitally important; in
fact, it is lifesaving for the estimated 1.1 million Americans who are
living with HIV and AIDS.
It has been nearly 25 years since the first case of AIDS was
identified, and in this past 25 years, we have seen the epidemic change.
An HIV-positive diagnosis does not carry with it the expectation of
rapidly deteriorating health as it once did. Advances in science and
improved treatment are allowing people with HIV and AIDS to live
longer than ever before. But as the HIV/AIDS epidemic changes, and as
we learn more about it, we need to also ensure that we are adequately
funding important parts of this program. Funding for the AIDS Drug
Assistance Program, or ADAP, is inexcusably inadequate, and the
waiting list that many States currently have is unacceptable.
I am heartened by the Administration's proposed budget that
includes a $70 million increase for ADAP funding, and I look forward to
the House eventually passing a budget that includes that significant
increase. But I am concerned by some of the proposed changes to the
Ryan White CARE Act, and I regret that I won't be able to stay for the
full hearing today to discuss my concern with the witnesses. But I feel
that the President's reauthorization principles propose some fairly drastic
changes to Ryan White, and at the same time, they are strangely vague.
For example, the Administration's principles include changes based on
phrases like "severity of need" or "core medical services," yet there is no
accompanying explanation or definition of what these terms mean, let
alone how the implementation of these changes would impact people
who rely on the Ryan White CARE Act funding for needed care.
Along those lines, I too have to express my disappointment that this
hearing's witness list does not include any stakeholder groups, but I am
heartened to hear, Mr. Chairman, that there will be a future roundtable
where stakeholders will be invited, and I do look forward to that future
opportunity.
Lastly, I would like to point out that we have underfunded this
epidemic in a number of ways, including the underfunding of prevention
efforts. And while prevention is not a significant part of the Ryan White
CARE Act, I think it is a serious issue that also deserves our attention
and discussion.
Thank you, Mr. Chairman.
MR. DEAL. I thank the gentlelady. I recognize Dr. Burgess from
Texas for an opening statement.
MR. BURGESS. Thank you, Mr. Chairman, and thank you for
holding this hearing today. I will submit my statement for the record as
well, but I do want to associate myself with the remarks of Dr. Norwood.
It is critically important these funds follow the patient and further just
note that in my district back in Texas, we have a portion of the district
where African American women are one of the largest growing
demographic groups that are having to deal with this disease. It is
critically important that we focus on keeping the money with the disease,
keeping the money with the patient. I am anxious to hear the testimony
of our witnesses today.
With that, I will yield back.
MR. DEAL. I am pleased to recognize the gentlelady from
California, Ms. Eshoo, for an opening statement.
MS. ESHOO. Thank you and good morning, Mr. Chairman and
members, and to our guest witnesses here today. This is an important
reauthorization. It always has been, and it remains so.
As my colleague from California stated, California has the second
highest AIDS incidence of any State in the Nation. Of course, we are a
Nation State, the largest and most populous State in the country, and so
the meaning of this statistic is not a surprise. The Ryan White CARE
Act plays, therefore, an essential role in the ability of my State and
localities to meet the healthcare needs of persons living with HIV/AIDS.
That is why the reauthorization of this Act is critical to the HIV/AIDS
community in California, and of course, across our Nation.
Last July, the White House and HHS released its recommended
principles for reauthorization of the Ryan White CARE Act.
Unfortunately, many of the proposals, if enacted, would do serious and
substantial harm to San Francisco's HIV infrastructure and would also
have a very negative impact on California's HIV funding levels. One of
my friends and colleagues just said that the money needs to follow the
patient. Of course it does, but there has to be an infrastructure.
Wherever we go for our healthcare, there is infrastructure there in order
to provide care to patients. Patients just don't show up at a tollbooth;
there has to be infrastructure. And so the dollars that support that in
order to care for patients is absolutely essential, and I think that is what
our debate is going to be about as we reauthorize the Act. In particular,
the principles called for the elimination of the hold harmless provision
that protects cities from experiencing rapid declines in resources that
could dismantle systems of care. This kind of change could mean a $7
million cut, for example, to San Francisco's direct HIV funding. This
represents a 25 percent reduction. That has an effect on patients. People
should just disabuse themselves of thinking that if you don't fund
infrastructure that you really are going to be taking care of people. It
doesn't work that way. So this represents a 25 percent reduction from
the $28 million San Francisco currently receives.
There are other proposals that could harm California overall,
including the proposal that calls for not counting AIDS cases from
metropolitan areas in determining the allocation of care funds to the
States. Why anyone would make that kind of proposal, I really can't
figure out. It is baffling to me, unless you just want to cut out whole
swaths of areas where the caseload is higher. This change could result in
the reduction of nearly $20 million in HIV funding to California, where
the vast majority of people living with AIDS reside in metropolitan
areas. That is what it is, I mean, you are going to target a place, target
metropolitan areas. You can get rid of a lot. But the Ryan White CARE
Act, I think, was designed to do something else. So I think that there is a
departure from some of the real core principles of the Act. And
abandoning these principles, in my view, and I think in many other
persons' views, would do irreparable harm, especially at a time when the
CARE Act is actually working. I think that that should be a source of
pride to Members of Congress. Those that helped establish it, certainly
Mr. Waxman from the beginning, the colleagues of ours whose shoulders
we stand on who are not in the Congress any longer.
The OMB and the GAO found that the CARE Act has contributed to
the decline of HIV/AIDS cases and deaths and reached underserved
groups, including the uninsured and the poor. Lack of access to care and
disparities are the results of flat funding and recessions, and not problems
with the legislation.
So I look forward to hearing from the witnesses today, and also
addressing, Mr. Chairman, the key areas where I think the legislation is
lacking and go back to and appreciate what has worked and why it has
worked. So I look forward to it and thank you for holding this important
hearing. I look forward to working with all members of the committee
on this. This Ryan White CARE Act has always had strong bipartisan
support, and I think that is why it has been successful. I don't think we
want to depart from that tradition as we reauthorize the Act.
Thank you.
MR. DEAL. I recognize the gentlelady from California, Ms. Bono,
for an opening statement.
MS. BONO. Thank you, Mr. Chairman. I have a written statement I
will submit, but I also want to just associate myself with my colleagues
from California and express my concern also, and state that I plan to be
fighting on this side as much as I can for California in some of these
changes. I just want to welcome the panelists and thank you very much,
Mr. Chairman, and Chairman Barton as well for moving this legislation
that I have been hoping would move for quite some time.
So thank you, and I yield back.
[The prepared statement of Hon. Mary Bono follows:]
PREPARED STATEMENT OF THE HON. MARY BONO, A REPRESENTATIVE IN CONGRESS FROM
THE STATE OF CALIFORNIA
Good morning Chairman Deal and Ranking Member Brown. Thank you
for holding this important hearing today. I would like to extend particular
thanks to Chairman Deal and Chairman Barton for their tireless efforts and
continued support in moving this critical legislation forward. I would
also to thank each of our panelists for taking the time to speak to us today.
The Ryan White CARE Act has transformed the way that we provide care
to those suffering from HIV and AIDS. Since its inception in 1990, this
program has undergone multiple reauthorizations in an effort to meet this
growing and frequently evolving epidemic.
As a representative from California, I have had the opportunity to
work closely with many groups and individuals who benefit directly from this
program. I have had the opportunity to see firsthand the impact of this
legislation within my own district as organizations such as the Desert AIDS
Project work tirelessly to provide those in need with access to care. I
look forward to a continued dialogue with each of you to ensure the future
viability of this program.
Currently, eleven states and two territories are home to 75% of the
population living with AIDS. In accordance with that, these thirteen
jurisdictions receive 75% of the funds distributed by the CARE Act. Funds
are going to the epidemic.
I know that many proposals have included provisions that would
eliminate basic tenets of the Ryan White funding structure and could have a
devastating impact. Many of the proposed changes focus on the restructuring
of Title I and Title II funds which provide funding for eligible metropolitan
areas (EMAs). In my own state of California there are currently 9 EMAs,
approximately 90% of the AIDS community within my state is estimated to live
within those areas.
Restructuring of Title I and especially Title II funds could have
potentially disastrous effects for my state and many other states who have
their AIDS population concentrated in these metropolitan areas.
If we are to accurately address the impact of CARE Act funding, a
selective analysis of only certain components is simply not adequate. We
must take into account all Titles and components of the CARE Act.
It is my hope that we can continue to move forward in the
reauthorization of this critical legislation in a timely manner. The
efforts of this committee and the Senate HELP committee have been
commendable. I would like to thank the respective staffs for their hard
work and dedication. I look forward to hearing from each of our panelists
today.
Thank you and I yield back the remainder of my time.
MR. DEAL. I thank the gentlelady. Mr. Waxman is recognized for
an opening statement.
MR. WAXMAN. Thank you, Mr. Chairman.
The reauthorization of the Ryan White Act may be one of the most
important actions by our subcommittee this year. This program has
literally been a lifesaver for people living with HIV and AIDS. It has
provided a critical support to cities which have been the center of the
epidemic, and to States funding critical drug programs to treat the
disease. I am distressed that the hearing is so limited in the witnesses
that are providing views to us today. We should have the benefit of the
views of stakeholders in this process: States, localities, caregivers, and
people who are living with HIV and AIDS, and I hope as we move
forward with the reauthorization we will hear from those parties on the
record and they will have the opportunity to examine the legislative
proposals this committee will vote on and to inform our actions with
their views.
We know the Administration has proposed some principles that
would result in dramatic changes in the Act, what it funds and who gets
support. These principles are highly controversial, and today we are
hearing their point of view. We know the GAO has done a study looking
at funding disparities under the Act, and there is much that is worthwhile
to consider in their work, but they provided only one part of the picture.
I want to state clearly one thing that is really important. In my
view, this Act has been extremely effective. It is an important piece of
legislation, and throughout its history it has been dealt with in a
bipartisan manner and has had broad bipartisan support. Changes that
have been made have been made at the margin, adjusting the bill to deal
with emerging problems and developments, but without disrupting the
program that was working. We all know this job has been made more
difficult because we have not had an option throughout many of these
years to add the necessary additional funds to the program. So when new
epicenters of the disease have appeared, we have been forced to
reallocate the limited part of funds available, rather than add the critical
new dollars that would be needed.
In my view, we found ourselves in this position because the
Administration and the Republicans who control the Congress have the
wrong fiscal policies and priorities, but we will leave that aside for the
moment. Even given these constraints, if we reauthorize this program
with continued broad support, we must approach the issue with full
attention to the need to be sure that we don't wreck what is working.
In that regard, I want to speak specifically to the issue of
California, but I am pleased to note that we have many Californians on the
subcommittee today who have expressed the view that we all strongly
hold--we have always been one of the earliest centers of the disease, and
we remain a State with more persons living with AIDS and with HIV
than only one other State, New York, and we have the second largest
number of minorities with AIDS reflecting the subject of the trend. It is
one of the five States with the most cases outside of EMAs. Yet
somehow, there is a perception that California gets too much money, that
it doesn't have a problem that requires this level of funding anymore. In
fact, when one looks at the funding provided under all the titles of the
Ryan White Act, California's payment per person with AIDS is actually
under the national average. I do not put into the record these statements
because I am only concerned about the people in California. I
understand and support helping people struggling with AIDS all over the
country, but I can't accept the taking of necessary funds away from
people with AIDS simply because there is a mistaken impression that
California's programs are overfunded. Nothing could be further from the
truth.
I look forward to working with all our colleagues on this
subcommittee, and fashioning a strong bipartisan consensus.
Thank you.
MR. DEAL. Thank you. Mr. Pallone is recognized for an opening
statement.
MR. PALLONE. Thank you, Mr. Chairman.
Since the very first cases of AIDS were reported in the early 1980s,
our Nation's response to the epidemic has made tremendous strides,
thanks in large part to services funded by the Ryan White CARE Act.
But in spite of our efforts, 45,000 new infections are reported each year.
Since the beginning of this epidemic, an estimated 530,000 Americans
with AIDS have died. That number has been growing at a rate of
approximately 14,000 new deaths per year, and racial and ethnic
minorities continue to be disproportionately effected by HIV/AIDS,
especially African Americans, Latinos, and Native Americans.
Similarly, women and young people appear to be at increased risk and
account for a growing proportion of diagnoses.
In my home State of New Jersey, we have the highest proportion of
cumulative AIDS cases in women, and we rank third in cumulative
pediatric AIDS cases and fifth in overall cumulative AIDS cases. In
response, New Jersey has worked to develop a comprehensive array of
medical care and treatment services, which are funded in part by private
organizations, State revenues, and CARE Act funds. For example, I am
proud to say that New Jersey has one of the most generous ADAP
programs in the country. We have an open formulary and no waiting list.
People infected with HIV/AIDS living in New Jersey have access to a
host of other services, including primary medical care, mental health
services, substance abuse services, oral health, case management,
nutritional services, and transportation services. But I am concerned that
some of the proposals put forth by the Bush Administration could
severely harm New Jersey's ability to maintain these services, which I
will discuss later during the question period.
Mr. Chairman, I would like to note that since it was signed into law,
the CARE Act has always enjoyed strong bipartisan support from
members of this committee because we all realize the importance of
providing medical care to people living with HIV/AIDS, as well as their
families. Along those lines, I am concerned that no one from any of the
stakeholder groups was invited to testify before the committee today, in
spite of Democratic requests. I was not here, Mr. Chairman, at the
beginning, and I know that you did mention or make a commitment to
have some kind of input from stakeholder groups. I hope that means a
subsequent hearing. I am not sure what exactly it means, but I still
believe that those people should have been here today for this public
hearing.
My point is that we have to work together in a bipartisan fashion on
this bill to reauthorize the CARE Act because it is a crucial bill and
certainly, this is the type of thing where I think we can work on a
bipartisan basis. And so every effort should be made to accomplish that
goal.
I yield back.
MR. DEAL. I thank the gentleman. Mr. Strickland is recognized for
an opening statement.
MR. STRICKLAND. Thank you, Mr. Chairman. I will be very brief.
I just want to point out something that I think we all realize, that
there are few opportunities that we have on this committee and in this
body to pass legislation that has a direct connection between whether or
not some people survive or do not survive. I have a very close family
member who has benefited from this Act, perhaps would not be living
today were it not for this legislation. I am pleased, as has been expressed
here, that this is something that both Democrats and Republicans have
supported in the past, and I look forward to this effort for the future.
Thank you. I yield back.
MR. DEAL. I thank the gentleman, and recognize Mr. Towns for an
opening statement.
MR. TOWNS. Thank you very much, Mr. Chairman. I also would
like to thank the representatives of the Administration who have come
here to talk to Congress about these critical issues. We welcome Dr.
Duke and Dr. Fenton to discuss the Administration's principles for
ensuring fair and equitable access to care for people in our Nation
currently living with AIDS and HIV. I applaud the Administration for its
initial positive response concerning reauthorization of Ryan White.
The President said in his State of the Union "A hopeful society acts
boldly to fight disease like HIV/AIDS, which can be prevented and
treated and defeated." The President then asked Congress to reform and
reauthorize the Ryan White Act, and provide new funding to States so
we end the waiting list for AIDS medicine in America.
I urge all of us to tackle these issues in a positive spirit that the
President began with this year. Let us make that statement a reality.
However, in our endeavors I am concerned that we not target
particular localities that have born the historic brunt of the HIV/AIDS
epidemic. Instead, let us celebrate the new treatments that extend life for
those persons living with AIDS by making sure that they are available to
all, especially to those least able to afford them. The tragedy is even
more heightened in minority communities. Of those people living with
AIDS, 75 percent are minorities and 25 percent are women. I am also
very concerned with the rate of HIV/AIDS among prison inmates. The
AIDS rate among inmates in our Nation's prisons is four times higher
than in the general population. AIDS is also the second leading cause of
death in our prisons. Infected prisoners, particularly in urban areas like
New York, may be released into the general population without receiving
treatment for their condition. This forces an increased burden for care
already overburdened local health facility.
I urge the Administration to take a fair approach to those States and
localities that have already born the brunt of the AIDS epidemic, and if
we do that, I think that we can really begin to change the situation that
we now find ourselves in. I think that this is a great opportunity for this
committee and a great opportunity for the Nation.
Thank you so much, Mr. Chairman. I yield back.
MR. DEAL. I thank the gentleman. I believe we have heard from all
the Members who are present on opening statements, so we will proceed
to the witnesses themselves. I am pleased to introduce them to the
subcommittee and to the audience.
MR. DEAL. First of all, Dr. Elizabeth Duke, who is the
Administrator of Health Resources and Services Administration of the
U.S. Department of Health and Human Services; Dr. Kevin Fenton, who
is the Director of the National Center for HIV, STD, and TB Prevention
of the Centers for Disease Control and Prevention; and Ms. Marcia
Crosse, the Director of Health Care of the U.S. Government
Accountability Office.
Ladies and gentleman, we are pleased to have you here. I will tell
you at the outset that your written testimony has been made a part of the
record, and we would, of course, welcome your summarization of that in
your oral testimony. We will follow the completion of your opening
statements with questions from the subcommittee itself.
Dr. Duke, we will begin with you.
STATEMENTS OF ELIZABETH M. DUKE, ADMINISTRATOR,
HEALTH RESOURCES AND SERVICES
ADMINISTRATION, U.S. DEPARTMENT OF HEALTH AND
HUMAN SERVICES; KEVIN FENTON, DIRECTOR,
NATIONAL CENTER FOR HIV, STD, AND TB
PREVENTION, CENTERS FOR DISEASE CONTROL AND
PREVENTION, U.S. DEPARTMENT OF HEALTH AND
HUMAN SERVICES; AND MARCIA CROSSE, DIRECTOR,
HEALTH CARE, U.S. GOVERNMENT ACCOUNTABILITY
OFFICE
DR. DUKE. Thank you, sir. Mr. Chairman and members of the
subcommittee, I am thankful for this opportunity to meet with you today
on behalf of the Department of Health and Human Services to discuss the
reauthorization of the Ryan White CARE Act. We thank you very much
for making reauthorization of the CARE Act an important part of your
agenda. It is an important Act which has long had bipartisan support,
and we are here to work with you all. I do appreciate the opportunity to
summarize and submit for the record my longer testimony.
The Ryan White CARE Act is a comprehensive approach to the
provision of medical care and treatment and support services to
individuals living with HIV/AIDS who have no other way to obtain such
care. The program is administered through the Health Resources and
Services Administration within the Department of Health and Human
Services. President Bush, in his 2006 State of the Union stressed the
importance of this program and he asked the Congress to "reform and
reauthorize the Ryan White CARE Act, and provide new funding to
States so we can end the waiting list for AIDS medication in America."
Since its last reauthorization, we have been able to provide anti-retroviral
treatment, primary care, and support services to over a half million
people annually in the United States, Puerto Rico, Guam, the Virgin
Islands, and eligible U.S. territories.
In 2004, an estimated 65 percent of the individuals were racial
minorities, 33 percent were women, and 87 percent were either uninsured
or received public health benefits. The Ryan White CARE Act programs
have provided important benefits to these populations. Overall, AIDS
mortality is down and lives have been extended with medications
purchased through the AIDS Drug Assistance Program, the ADAP
program. Pregnant women have been provided with care that has
allowed them to give birth to children free from HIV infection, and
thousands have received support services that have allowed them to
access healthcare and to remain in care.
The structure of the Ryan White CARE Act allows for local
flexibility and responsiveness in meeting the diverse needs in different
regions of the country. It fosters collaboration among Federal, State, and
local governments, and public and private entities to create a continuum
of care for people living with HIV/AIDS.
Last July, the Administration emphasized five key principles for
reauthorization of the Ryan White CARE Act. First, to serve the
neediest first. Second, to focus on lifesaving, life-extending services.
Third, to increase prevention efforts. Fourth, to increase accountability,
and fifth, to increase flexibility. The President has made fighting the
spread of HIV/AIDS a top priority of his Administration, and he will
continue to work with Congress to encourage prevention and the
provision of appropriate care and treatment for those suffering from this
disease. The President requested $2.08 billion in '06, and the Congress
appropriated $2.06 billion for the program. The President's 2007 budget
request for the CARE Act is $2.16 billion, an increase of $95 million for
several elements of a new HIV/AIDS initiative. Further elements of this
domestic initiative focusing on testing in the areas of greatest need are
requested outside of the CARE Act.
The CARE Act request will support a comprehensive approach to
address the health needs of persons living with HIV/AIDS consistent
with the reauthorization principles. The budget also includes a new
authority to increase program flexibility by allowing the Secretary to
transfer up to five percent of the funding provided for each part of the
Ryan White CARE Act to any other part of the Act. Of the new $95
million requested, $70 million will address the ongoing problem of State
waiting lists and provide care and lifesaving medications to those newly
diagnosed as a result of increased testing efforts. The remaining $25
million will be used to expand outreach efforts by providing new HIV
community action grants to intermediaries, including faith and
community based organizations, and to provide technical assistance and
sub-awards to grassroots organizations.
We can be proud of the accomplishments of the Ryan White CARE
Act and the dedication of the people who make it work. The program
has reached over 571,000 uninsured and underinsured persons affected
by HIV/AIDS annually. Medication has been provided to almost
139,000 persons living with HIV/AIDS in 2004. The program strives to
reach those individuals who are most in need of services. Today, people
with HIV/AIDS are living longer, healthier lives in part because of this
Act. To make this legislation more responsive in the future, the
Administration urges Congress to take into account the stated principles
it has offered for reauthorization of the CARE Act. We look forward to
working with the Congress throughout this reauthorization process.
I thank you for having us here this morning.
[The prepared statement of Dr. Elizabeth M. Duke follows:]
PREPARED STATEMENT OF DR. ELIZABETH M. DUKE, ADMINISTRATOR, HEALTH
RESOURCES AND SERVICES ADMINISTRATION, U.S. DEPARTMENT OF HEALTH AND HUMAN
SERVICES
Mr. Chairman, Members of the Subcommittee, I am thankful for the
opportunity to meet with you today on behalf of the Department of Health
and Human Services (HHS) to discuss the reauthorization of the Ryan White
Comprehensive AIDS Resources Emergency (CARE) Act.
Background
The Ryan White CARE Act is a comprehensive approach to the
provision of medical care, treatment, and support services to individuals
living with HIV/AIDS who have no other means with which to obtain such care.
The program is administered through the HIV/AIDS Bureau of the Health
Resources and Services Administration (HRSA) within the Department of Health
and Human Services (HHS). The Federal Ryan White CARE Act was enacted in
1990; it was amended and reauthorized in 1996 and again in 2000. The
authorization of appropriations expired on September 30, 2005. President
Bush in his 2006 State of the Union Address stressed the importance of this
program and asked Congress to, "reform and reauthorize the Ryan White Act and
provide new funding to states so we end the waiting lists for AIDS medicines
in America."
Since its last reauthorization, we have been able to provide
antiretroviral treatment, primary care, and support services to over half a
million people annually in the United States, Puerto Rico, Guam, the U.S.
Virgin Islands, and eligible U.S. territories. In 2004, an estimated 65
percent of these individuals were racial minorities, 33 percent were women,
and 87 percent were either uninsured or received public health benefits.
The Ryan White CARE Act programs have provided important benefits to these
populations. Overall, AIDS mortality is down and lives have been extended
with HIV/AIDS medications purchased through the AIDS Drug Assistance Program
(ADAP). Pregnant women have been provided with care that has allowed them
to give birth to children free from HIV infection, and thousands have
received support services that have allowed them to access and remain in
health care.
The structure of the Ryan White CARE Act allows for local
flexibility and responsiveness in meeting diverse needs in different
regions. It fosters collaboration among Federal, State, and local
governments, and public and private entities to create a continuum of care
for people living with HIV/AIDS.
The Ryan White CARE Act is organized into distinct program
components. Title I provides emergency assistance to Eligible Metropolitan
Areas (EMAs) that are most severely affected by the HIV/AIDS epidemic. To
be eligible for Title I funding, an area must have reported at least 2,000
AIDS cases during the previous 5 years and have a population of at least
500,000.
Title II of the CARE Act provides grants to all 50 States, the
District of Columbia, Puerto Rico, Guam, the U.S. Virgin Islands, and
eligible U.S. territories. Title II grants support a wide range of care
and support services. Title II also provides grants to States for Emerging
Communities - that is, localities reporting between 500 and 1,999 AIDS
cases over the most recent 5 years. Additionally, Title II funds the
AIDS Drug Assistance Program (ADAP), which provides medications for the
treatment of HIV disease.
Title III, Early Intervention Services (EIS), supports
comprehensive primary health care and certain services for individuals
who have been diagnosed with HIV. Services include education to prevent
transmission of HIV and case management to assure continuity of care.
Title III grants expand the capacity of organizations providing primary
care to indigent HIV-positive individuals. One third of all Title III
grantees are community health centers.
Title IV provides community-based, family-centered services to
women, children, and youth living with HIV and their families. Services
include: primary and specialty medical care, psychosocial services,
logistical support, outreach and case management.
The Ryan White CARE Act includes Part F - the Special Projects
of National Significance (SPNS), the AIDS Education and Training Centers
(AETCs), and the HIV/AIDS Dental Reimbursement Program. SPNS grants
support innovative programs that hold promise for improving health outcomes.
The AETCs provide education and training on a variety of topics for
clinicians who treat people living with HIV/AIDS, with a focus on primary
HIV care for underserved populations. The Dental Reimbursement Program
assists accredited dental schools and postdoctoral programs with
uncompensated costs incurred in providing dental treatment to patients
with HIV infection. The Community Based Dental Partnership Program funds
eligible entities in their efforts to increase access to oral health care
and to support oral health service delivery and provider training in
community settings.
Principles of Reauthorization
Last July, the Administration emphasized five key principles for
reauthorization of the Ryan White CARE Act: (1) serve the neediest first;
(2) focus on life-saving and life-extending services; (3) increase
prevention efforts; (4) increase accountability; and (5) increase
flexibility. The President has made fighting the spread of HIV/AIDS a top
priority of his Administration, and he will continue to work with Congress
to encourage prevention, and the provision of appropriate care and
treatment to those suffering from the disease. The President requested
$2.08 billion for FY2006 and Congress appropriated $2.06 billion for the
program. The President's FY2007 budget request for the CARE Act HIV/AIDS
activities is $2.16 billion, an increase of $95 million for several
elements of a new Domestic HIV/AIDS initiative (further elements of that
initiative, focusing on testing in the areas of greatest need, are
requested outside the CARE Act). The request will support a comprehensive
approach to address the health needs of persons living with HIV/AIDS,
consistent with the reauthorization principles. The budget also includes a
new authority to increase program flexibility by allowing the Secretary to
transfer up to five percent of funding provided for each Part of the Ryan
White CARE Act to any other Part. Of the new $95 million requested, $70
million will address the on-going problem of State waiting lists and provide
care and life-saving medications to those newly diagnosed as a result of
increased testing efforts. The remaining $25 million will be used to expand
outreach efforts by providing new HIV community action grants to
intermediaries including faith and community-based organizations, and to
provide technical assistance and sub-awards to grassroots organizations.
In order to serve the neediest first, objective indicators must be
established to determine the severity of need for funding core medical
services. The Secretary of Health and Human Services (HHS) would develop a
severity of need for core services index (SNCSI). This index would be based
upon objective criteria and be focused on core services. It would take into
account variables such as HIV incidence and prevalence, levels of poverty,
and availability of other resources.
The Administration proposes focusing on life-saving and
life-extending services by: establishing a set of core medical services;
requiring that 75 percent of funds for Titles I, II, III and IV be spent on
these core services; and maintaining a Federal list of core medications for
the AIDS Drug Assistance Program (ADAP).
Requiring States to implement routine voluntary HIV testing in
public facilities and working with private health care providers to
implement testing will increase disease detection and further prevention
efforts. With an estimated 250,000 HIV-positive individuals unaware of
their HIV-positive status, testing is a key element in the Administration's
prevention efforts. States will be encouraged to adopt important
prevention strategies upon receipt of their Ryan White allocations.
Grantees are more likely to be held accountable if: States are
required to submit HIV data; grantees are required to report on system and
client -level data and progress; the payor-of-last-resort provision is
strengthened; States coordinate HIV care and treatment with other federally
funded programs to maximize efficiency and effectiveness; double counting
of AIDS cases between eligible metropolitan areas (EMAs) and States is
eliminated; and the "hold harmless" provisions are deleted.
Today, because of the way AIDS cases are counted, that is by
including cases spanning the last 10 years, metropolitan areas with newer
epidemics receive disproportionately less than those with more longstanding
problems. In order to more accurately reflect the current status of the
epidemic, the provisions that entitle cities to be "held harmless" from
funding reductions should be eliminated.
Allowing the Secretary of HHS to redistribute unallocated balances
based on the severity of need and allowing planning councils to serve as
voluntary and advisory bodies to mayors will increase flexibility in the
program. To maximize all CARE Act funding, unspent funds from Titles I and
II would revert to the Secretary of HHS and the Secretary would extend those
funds to ADAP programs or areas with the greatest need.
We can all be proud of the accomplishments of the Ryan White CARE
Act and the dedicated people who make it work. The program has reached
over 571,000 uninsured or underinsured persons affected by HIV/AIDS annually.
Medication was provided to an estimated 138,834 persons living with HIV/AIDS
in 2004. The program strives to reach those individuals who are the most in
need of its services. Today, people with HIV/AIDS are living longer and
healthier lives in part because of this Act. In order to make the
legislation more responsive in the future, the Administration urges Congress
to take into account the above stated principles in the reauthorization of
the Ryan White CARE Act.
Thank you for the opportunity to discuss the Administration's
principles for the reauthorization of the Ryan White CARE Act. We look
forward to working with Congress throughout the reauthorization process.
MR. DEAL. Thank you. Dr. Fenton.
DR. FENTON. Good morning, Mr. Chairman and members of the
subcommittee. Thank you for the opportunity to discuss current trends in
HIV/AIDS in the United States, and the status of State HIV surveillance
systems.
Twenty-five years ago, the first cases of AIDS were reported in the
United States. Although the struggle to prevent HIV infections is not
over, we have made substantial progress and achieved major successes.
For instance, the dramatic decrease in mother-to-child HIV transmission
is one of the great success stories of HIV prevention. We have also seen
declines in the number of HIV/AIDS cases attributed to injecting drug
use. The number of new infections annually has declined from more
than 150,000 in the late 1980s to an estimated 40,000 per year today.
However, the HIV/AIDS epidemic has changed in other important ways.
In the early days of the epidemic, the greatest number of new infections
was found among white men who have sex with men, and among
injecting drug users. Today, the epidemic has a growing impact on racial
and ethnic minority, particularly African Americans and on women.
CDC is responsible for ensuring the integrity of our national
HIV/AIDS surveillance system. As with other diseases, individual State
governments have authority for statutory and regulatory issues for
HIV/AIDS reporting and data protection, including the decision
regarding what type of system will be used for disease reporting. Except
for HIV, all the reported infectious diseases, including AIDS, are
routinely reported to States using name-based reporting systems. It is
important to note for confidentiality purposes that the CDC does not
receive the names of individuals.
Currently, 43 States use confidential name-based HIV case reporting,
as shown in the chart to my right. The remaining seven States and the
District of Columbia use code or name-to-code reporting. Among those
eight areas, there are seven different codes. Several of the remaining
States have notified CDC that they intend to implement name-based HIV
surveillance in 2006. Only last week, the Governor of California enacted
legislation which moves this State from a code-based to an integrated
name-based reporting system.
There are three primary uses of surveillance data. First, epidemic
monitoring; second, prevention planning to target prevention
interventions; and third, allocation of local, State, and Federal funds for
prevention, care, and treatment services, including the Ryan White
Comprehensive AIDS Resource Emergency Act. CDC strongly supports
the requirement in the Ryan White CARE Act for States to implement
HIV reporting by 2007. CDC's policy is to accept HIV infection and
AIDS case surveillance data only from areas conducting confidential
name-based reporting, because this reporting has been shown to routinely
achieve high levels of accuracy and reliability. HIV surveillance that is
conducted using coded patient identifiers has not been shown to routinely
produce equally accurate, timely, or complete data compared to that
conducted using confidential name-based surveillance methods.
Currently, only confidential name-based HIV reporting integrated with
AIDS surveillance data can be used by States to identify and remove
cases that are counted in more than one State before they are reported to
CDC's national surveillance database. States that have implemented
code-based systems consistently inform CDC that these systems are
more complex, more expensive, and burdensome than name-based
reporting systems. CDC is aware of one systematic quantitative
evaluation which compared the relative costs of name-based systems to
systems using codes and named codes. This evaluation found that a
name-to-code reporting system was 15 percent more expensive than
name-based reporting, and reporting based exclusively on codes was 50
percent more expensive than name-based reporting. CDC is and
continues to provide technical assistance to States transitioning from
code to name-based systems to ensure that their data can be integrated
into the National HIV Data System as quickly as possible. CDC
continues to provide funding and technical assistance to States that use
code-based methods for identifying patients in their HIV surveillance
system.
In summary, CDC is responsible for ensuring the integrity of the
National HIV and AIDS Surveillance System to accurately monitor the
epidemic in the United States. CDC continues to work closely with the
States to help them adopt and implement high quality HIV surveillance
systems. Having all States collect HIV information in the same manner
will ensure that the Nation has reliable and valid data to monitor the
scope of the epidemic, to plan for and evaluate prevention, care, and
treatment programs, and to focus these programs on persons most at risk.
Thank you again for this opportunity, and I will pleased to answer
any questions.
[The prepared statement of Dr. Kevin Fenton follows:]
PREPARED STATEMENT OF DR. KEVIN FENTON, DIRECTOR, NATIONAL CENTER FOR HIV,
STD, AND TB PREVENTION, CENTERS FOR DISEASE CONTROL AND PREVENTION, U.S.
DEPARTMENT OF HEALTH AND HUMAN SERVICES
Introduction
Good morning Mr. Chairman and Members of the Subcommittee. My name
is Kevin Fenton and I am Director of the National Center for HIV, STD, and
TB Prevention at the Centers for Disease Control and Prevention (CDC). I am
accompanied by Matt McKenna, Chief of the Center's HIV Incidence & Case
Surveillance Branch. Thank you for the opportunity to discuss current trends
in HIV/AIDS in the United States and the status of state HIV surveillance
systems.
Twenty-five years ago, the first cases of AIDS were reported in the
United States. HIV and AIDS remains one of the greatest public health
challenges today. To date, HIV has claimed the lives of more than 22 million
people worldwide, and in the United States, more than 500,000 people have
died of AIDS. The number of new HIV infections annually has declined from
more than 150,000 in the late 1980s to an estimated 40,000 per year today.
An estimated 1 - 1.2 million people currently are living with HIV/AIDS
in the United States. Due to more effective treatment, people are living
longer and healthier lives after a diagnosis of HIV. Despite the growing
pool of persons capable of transmitting the virus, the number of persons
becoming newly infected each year has remained constant over the last 10
years, at approximately 40,000 new infections per year.
While the struggle to prevent new HIV infections is not over,
there have been some major successes. For instance, the dramatic decrease
in mother to child (perinatal) HIV transmission is one of the great success
stories of HIV prevention. Since the beginning of the epidemic, the number
of infants infected with HIV through mother-to-child transmission has
decreased by almost 90%, from an estimated peak of 1,750 HIV-infected
infants born each year during the early to mid-1990s to between 140 and 230
infants in 2002. These declines are due to multiple interventions,
including routine voluntary HIV testing of pregnant women, the use of rapid
HIV tests at delivery for women of unknown HIV status, and the use of
antiretroviral therapy by HIV-infected women during pregnancy and infants
after birth.
We have also seen declines in the number of HIV and AIDS cases
attributed to injection drug use. For example, the number of AIDS cases
attributed to injection drug use has declined by about 15% from 2000 to
2004.
In addition to the dramatic decline in the occurrence of new cases
since the beginning of the epidemic, the HIV/AIDS epidemic has changed in
other important ways. In the early days of the epidemic, the greatest number
of new infections was found among white men who have sex with men (MSM) and
among injection drug users. Today, while men who have sex with men overall
still account for the largest percentage of new HIV infections, the epidemic
has expanded to have a growing impact on racial and ethnic minorities
(particularly African Americans). During 2001-2004 in 35 areas with HIV
case reporting, 51% of all new HIV/AIDS diagnoses were in African Americans.
The epidemic is also affecting more women. Early in the epidemic, HIV
infection and AIDS were diagnosed for relatively few women and female
adolescents. Today, women account for more than one quarter of all new
HIV/AIDS diagnoses. Women of color are especially affected by HIV infection
and AIDS, and in 2002 (the most recent year available) HIV infection was the
leading cause of death for African American women aged 25-34 years.
Of great concern to us is the approximately 25 percent of persons
with HIV who do not know they are infected. We believe that infections
transmitted from this group account for more than half of new HIV infections
each year, underscoring the rationale for our substantially increased efforts
to reach at-risk communities with HIV testing services. When people know
their status they are more likely to protect their partners from infection.
Knowledge of one's HIV infection can help prevent the spread of HIV to
others.
HIV surveillance in the United States
A robust surveillance system provides a strong foundation for good
public health programs. Surveillance data are crucial to informing and
guiding effective and evidence-based prevention efforts. Surveillance for
HIV/AIDS has evolved over time in response to changes in the epidemic,
development in diagnostics, technologies and treatments. Initial
surveillance was for AIDS cases, but as new diagnostic tools have become
available, and our understanding of the disease pathogenesis has evolved,
so too have our methods for surveillance. Today, surveillance of HIV/AIDS
is among the most complex for any infectious disease-relying upon multiple
methods, data sources and analytic techniques. Having accurate information
about the HIV epidemic requires obtaining information about several important
events over the life of a case, from initial infection, through diagnosis,
to clinical and laboratory markers of illness, through death.
CDC is responsible for ensuring the integrity of the national
HIV/AIDS surveillance system to accurately monitor the epidemic in the
United States. CDC provides funding, technical assistance, and coordinates
activities with states to aggregate data that constitute the national
system. CDC also issues recommended security and confidentiality policies
and procedures to state and local surveillance programs that are consistent
with the agency standards for the security of surveillance data. CDC
requires that recipients of federal funds for HIV/AIDS surveillance
establish the minimum security standards and include their security policy
in applications for surveillance funds. As with other diseases, individual
state governments have authority for statutory and regulatory issues for
HIV/AIDS reporting and data protection, including the decision regarding
what type of system will be used for disease reporting, such as name-based
or code-based. Except for HIV, all other reported infectious diseases,
including AIDS, are routinely reported to states using name-based reporting
systems. It is important to note, for confidentiality purposes, that the CDC
does not receive the names of individuals. This information resides with
public health authorities at the state level.
Since the beginning of the epidemic, AIDS surveillance has been a
cornerstone of national, state, and local efforts to monitor the scope and
impact of the HIV epidemic. AIDS surveillance data, however, no longer
accurately describe the full extent of the epidemic, as effective therapies
have slowed the progression of HIV disease. Since 1999, CDC has advised
states to conduct HIV reporting using the same name-based approach currently
used for AIDS surveillance nationwide. Currently, 43 states use
confidential name-based HIV case reporting. The remaining seven states and
the District of Columbia use code or name-to-code reporting. Among those
eight areas there are seven different codes. Several of the remaining states
have notified CDC that they intend to implement name-based HIV surveillance
in 2006. In fact, on April 17, 2006, the Governor of California signed
into law SB 669 which has moved the state from a code-based to an integrated
name-based reporting system.
Use of HIV/AIDS Data
CDC's HIV/AIDS surveillance system is the nation's key source of
information used to track the epidemic. Surveillance activities provide
demographic, laboratory, clinical and behavioral risk data that are used to
identify populations at greatest risk for HIV infection. There are three
primary uses of surveillance data: 1) epidemic monitoring, including
estimates of incidence and prevalence of HIV and AIDS in the population,
estimates of incidence of HIV infection, and changes and trends in HIV and
AIDS in populations at risk; 2) prevention planning to target prevention
interventions, evaluate their effectiveness, and facilitate access to health,
social and prevention services; and 3) allocation of local, state, and
federal funds for prevention, care and treatment services, including the
Ryan White Comprehensive AIDS Resources Emergency Act (RWCA).
CDC surveillance data for AIDS and HIV disease are used by the
Health Resources and Services Administration (HRSA) to determine funding
levels under the RWCA. Each year, CDC provides to HRSA all AIDS case counts
for states and eligible metropolitan areas (EMAs) based on reports from state
health departments for the previous 10, 12-month periods, as required by law.
These data are not adjusted in any way and constitute crude, counts of
reported cases as prescribed in the current RWCA legislation. CDC also
provides HRSA with bi-annual survival weights to calculate the estimated
living cases for computation of the Title I and II grant awards. HRSA uses
CDC's surveillance data to determine Title I and II allotments as well as to
identify areas that qualify as EMAs and emerging communities.
History of HIV/AIDS Reporting
At the beginning of the HIV epidemic, before we even knew that HIV
causes AIDS, surveillance of this public health problem could only be
conducted by tracking AIDS cases and deaths. In the early 1980s when all
states implemented mandatory reporting for this condition, they implemented
the same system used for all other reportable conditions where the name of
the affected person served as the patient identifier.
In 1985, when the first diagnostic test for HIV became available,
Minnesota and Colorado were the first states to begin conducting surveillance
for persons diagnosed with HIV but who were not yet sick with AIDS. These
states extended their existing systems and used name-based reporting for HIV
diagnosis. By the end of 1994, when CDC began to support national
aggregation of surveillance data on non-AIDS HIV, 25 states collecting this
information were using name-based systems. Four other states (Maryland,
Texas, Connecticut, and Oregon) were using codes.
Numerous formal evaluations of name-based reporting for AIDS were
conducted during the late 1980s and early 1990s. These evaluations
demonstrated that this was a highly accurate and reliable method for
conducting surveillance for AIDS and non-AIDS HIV. Because the vast majority
of states were using name-based systems for non-AIDS HIV, the fact that
name-based HIV and AIDS case surveillance had been shown to be highly
accurate and reliable, and no formal evaluations of code-based systems had
been conducted, CDC determined that only name-based reports would be accepted
into the data collection system for the national database.
In 1995, CDC convened a meeting of states conducting non-AIDS HIV
surveillance (code and name-based) to review the operational, technical, and
scientific challenges associated with surveillance using coded identifiers.
The states recommended that CDC evaluate additional coded identifiers and
assist them in documenting and disseminating the results of their findings.
With CDC collaboration and support, Texas and Maryland conducted an
evaluation of their code-based systems based on reports submitted during
1994-1996. This research documented nearly 50 percent incomplete reporting
and other deficiencies in the accuracy and reliability of these systems.
Texas subsequently switched to name-based reporting; Maryland continued to
execute and evaluate its code-based system.
The other major outcome of this 1995 meeting was a request from the
states that research be done to determine whether name-based reporting
discouraged HIV testing. CDC and the University of California-San Francisco
did several evaluations, all of which showed no impact of reporting laws on
testing behavior. The two main reasons people reported for not testing for
HIV were not perceiving themselves at risk and being afraid to find out that
they were positive.
In 1997, the Council of State and Territorial Epidemiologists
promulgated a position statement recommending the addition of non-AIDS HIV
to the national public health surveillance system. In 1999, CDC published
formal guidelines for the conduct of non-AIDS HIV surveillance. These
recommendations provided performance standards for evaluating HIV
surveillance systems (name or code); reviewed the existing evidence for
the reliability and accuracy of varying methods for reporting this
condition; and based on the existing evidence at that time, "advised" that
states use name-based systems. However, CDC also stated that it would
continue to work with states to develop and implement standardized methods
for evaluating surveillance systems using name and code-based data.
Throughout all subsequent national meetings, as well as in discussions
with states, CDC reiterated that it "advised" states to use name-based
reporting, and the agency's commitment to develop standardized evaluation
methods.
In 2001, CDC funded 10 states (3 code-based and 7 name-based) to
pilot methods for evaluating these systems. Two of the code-based
states--Illinois and Washington--have subsequently switched to name-based
reporting. Also in 2001, CDC launched a national evaluation of interstate
duplicate reports (i.e. multiple reports from multiple states that provide
information about the same person.) This was necessary because the great
success of HIV treatments meant that persons with HIV and AIDS were living
longer, healthier lives, and were more likely to move across and within
states. From the outset of this evaluation, it was clear that technical
problems made it impossible to efficiently include code-based reports.
These problems included: 1) the variety of codes used by different states
conducting this type of surveillance; 2) the lack of a central, standardized,
national database with code-based reports; and 3) the inability of states
using codes to adequately communicate with states using names regarding
potential duplicate records. Therefore, only name-based reports could be
included in this interstate de-duplication effort. The results of this
assessment indicated that the number of duplicate reports for non-AIDS HIV
cases varied a great deal from state to state, and exceeded the proportion
of duplicate case reports for AIDS cases.
Following completion of the interstate duplication study, CDC did
three things: 1) identified and eliminated all identified records
attributable to duplicate reporting in the national database; 2) implemented
a formal system for coordinating the ongoing identification and removal of
duplicate reports in the national database; 3) published and disseminated a
"Dear Colleague" letter signed by the CDC Director in July 2005 stating
that the agency was upgrading the guidance for states to implement
name-based HIV reporting from "advising" to "recommending." The letter
also indicated that CDC would provide technical assistance to states
transitioning from code to name-based systems to assure that their data
could be integrated into the national HIV (non-AIDS and AIDS) data system
as quickly as possible.
Additionally, the RWCA Amendments of 2000 called for an Institute
of Medicine (IOM) study of states' HIV surveillance systems and their
adequacy and reliability for the purpose of using such data as the basis
for CARE Act formula grant allocation. The IOM issued its report, Measuring
What Matters, on allocation, planning and quality assessment for the RWCA.
The IOM did not evaluate the accuracy or effectiveness of code-based systems.
The IOM Committee noted in the Report that it was beyond its capacity to
evaluate the HIV case-reporting system of each state and territory. The IOM
Committee determined that it was "unclear if name-based reporting is
intrinsically superior to code-based reporting for eliminating duplicate
reports." This Report made clear that technical problems made it impossible
to efficiently include code-based reports. The Committee did not have
available the final results of the interstate duplication evaluation project
when it made these recommendations.
Current Status
CDC strongly supports the requirement in the RWCA for states to
implement HIV reporting by 2007. CDC's policy is to accept HIV infection and
AIDS case surveillance data only from areas conducting confidential
name-based reporting because this reporting has been shown to routinely
achieve high levels of accuracy and reliability. Personal identifiers are
removed before data are provided to CDC. CDC provides recommended security
and confidentiality policies and procedures of state and local surveillance
programs that are consistent with the agency standards for the security of
HIV/AIDS surveillance data. CDC also requires that recipients of federal
funds for HIV/AIDS surveillance establish the minimum security standards and
include their security policy in applications for surveillance funds.
HIV surveillance that is conducted using coded patient identifiers
has not been shown to routinely produce equally accurate, timely, or complete
data compared to that conducted using confidential, name-based surveillance
methods. Currently, only confidential, name-based HIV reporting, integrated
with AIDS surveillance data, can be used by states to identify and remove
cases that are counted in more than one state before they are reported to
CDC's national surveillance database.
States that have implemented code-based systems consistently inform
CDC that these systems are more complex, expensive and burdensome than
name-based reporting systems. Since states have extensive experience with
name-based systems for persons with HIV who have progressed to AIDS, CDC has
accepted that these assertions are valid. However, few formal economic
evaluations have been conducted. CDC is only aware of one such systematic
quantitative evaluation comparing the relative costs of name-based systems
to systems using codes and name-to-code. This evaluation found that a
name-to-code reporting system was 15 percent more expensive than name-based
reporting, and reporting based exclusively on codes was 50 percent more
expensive than name-based reporting.
CDC is providing technical assistance to states transitioning from
code- to name-based systems to assure that their data can be integrated into
the national HIV (non-AIDS and AIDS) data system as quickly as possible.
CDC continues to provide assistance to the seven states that have made the
transition to name-based systems since the IOM report was published in 2004.
As previously noted, as of April 2006, 43 states have adopted use of
name-based systems of HIV reporting.
CDC continues to provide funding and technical assistance to states
that use code-based methods for identifying patients in their HIV
surveillance system. CDC is implementing and disseminating methods for
conducting evaluations of the accuracy and reliability of reporting systems
within states, regardless of reporting method. CDC is deploying data
management software that integrates functions that will allow areas to use
standardized methods to evaluate their systems based on recently completed
pilot studies. In addition, CDC regularly offers technical assistance to
areas using code-based systems that have not received this software. This
assistance includes the software, and relevant documentation, that was used
in the pilots.
Closing
In summary, CDC is responsible for ensuring the integrity of the
national HIV/AIDS surveillance system to accurately monitor the epidemic in
the United States. CDC continues to work closely with all states to help
them adopt and implement high-quality HIV surveillance systems. Having all
states collect HIV information in the same manner will ensure that the
nation has reliable and valid data to monitor the scope of the epidemic;
plan for and evaluate prevention, care, and treatment programs; and focus
those programs on persons most at risk.
Thank you again for this opportunity. I will be pleased to answer
any questions.
Figure 1. Current Status of HIV Infection Surveillance, April 2006.
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MR. DEAL. Thank you. Ms. Crosse.
MS. CROSSE. Mr. Chairman and members of the subcommittee, I am
pleased to be here today to discuss the Ryan White CARE Act.
In fiscal year 2004, over $2 billion in funding was provided through
the CARE Act, the majority of which was distributed through Title I
grants to eligible metropolitan areas, EMAs, and Title II grants to States,
the District of Columbia, and territories. Metropolitan areas qualify as
EMAs if they have a total of 2,000 reported AIDS cases in the previous
five years. Titles I and II use formulas to distribute grants according to a
jurisdiction's reported count of AIDS cases.
My testimony today is based on our February 2006 report on CARE
Act funding. I will focus on issues related to the formula-based funding
under Titles I and II that account for about 80 percent of total CARE Act
funding. We did not examine funding under other smaller provisions of
the CARE Act, where the distribution under competitive grants may
currently be different.
Specifically, today I will discuss the extent of funding differences
among CARE Act grantees and how specific CARE Act funding formula
provisions contribute to these differences, and what distribution
differences could result from using HIV cases in CARE Act funding
formulas.
In brief, multiple provisions in the CARE Act funding formulas
result in funding not being comparable per AIDS case across grantees.
First, the CARE Act uses measures of AIDS cases that do not accurately
reflect the number of persons living with AIDS. For example, the
statutory funding formulas require the use of cumulative AIDS case
counts, which could include deceased cases.
Second, CARE Act provisions related to metropolitan areas result in
variability of the amount of funding per AIDS case among grantees. For
example, AIDS cases within EMAs are counted once for determining
funding under Title I of the CARE Act, and again under Title II for
determining funding for the States and territories in which those EMAs
are located. As a result, States with EMAs receive more total funding
per AIDS case than States without EMAs.
Third, CARE Act hold harmless provisions under Titles I and II and
the grandfather clause for EMAs under Title I sustain funding and
eligibility of CARE Act grantees on the basis of a previous year's
measurements of the number of AIDS cases in these jurisdictions. For
example, the CARE Act Title I hold harmless provision results in one
EMA continuing to have deceased AIDS cases factored into its allocation
because its hold harmless funding dates back to the mid-1990s when
formula funding was based on a count of AIDS cases from the beginning
of the epidemic.
The most recent reauthorization of the CARE Act in 2000 specified
that HIV cases should be used in funding formulas no later than 2007. If
HIV case counts had been incorporated in allocating fiscal year 2004
CARE Act grants, funding would have shifted among jurisdictions.
Grantees in the South and the Midwest generally would have received
more funding if HIV cases were used in the funding formulas, but there
would have been grantees with increased funding and grantees with
decreased funding in every region of the country.
Although CARE Act grantees have established HIV case reporting
systems, differences between these systems in their maturity and
reporting methods, for instance, would have affected the distribution of
CARE Act funds based on estimated living AIDS cases and HIV case
counts. Grantees with more mature HIV reporting systems would tend to
receive more funds. Further, CDC has not accepted data for use in the
formulas from systems that use code-based rather than name-based HIV
reporting, and as we have just heard from Dr. Fenton, there are a number
of jurisdictions still using code-based systems.
We reported in February, 2006, that if Congress wishes CARE Act
funding to more closely reflect the distribution of the current epidemic, it
should consider taking actions that lead to more comparable funding per
case by revising the funding formulas. In accordance with achieving
more comparable funding per case, we raised a number of matters for
consideration when Congress reviews the CARE Act.
Mr. Chairman, this completes my prepared statement. I would be
happy to respond to any questions you or other members of the
subcommittee may have. Thank you.
[The prepared statement of Marcia Crosse follows:]
PREPARED STATEMENT OF MARCIA CROSSE, DIRECTOR, HEALTH CARE, U.S. GENERAL
ACCOUNTABILITY OFFICE
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MR. DEAL. Well, thank you. Very interesting comments from all of
you. There appear to be some issues that will probably divide our
members of our subcommittee. Not necessarily along political lines, but
maybe along geographical lines. So let me just jump in to some of those.
I assume, Ms. Crosse, that what you are recommending is that we go
to a more equitable counting system that would eliminate some of the
things that you have talked about, such as counting deceased cases in the
cumulative totals. Would that perhaps equalize more appropriately in
States that do not have DMAs? As I understand it, that gets you a double
count on your statistical numbers. Am I generally correct on what you
are recommending?
MS. CROSSE. Yes, Mr. Chairman, in general, we are suggesting that
more appropriate recognition of the current epidemic's pattern should be
considered in the distribution of funds and that some of the current
provisions do not reflect where the current epidemic is spread across the
country, and that while there needs to be consideration given to how to
balance the needs of different jurisdictions, that jurisdictions with more
recent spread of the disease currently receive substantially less funding
per case than some of the jurisdictions that were the early focus of the
disease.
MR. DEAL. Dr. Fenton, in that regard, is there any shortfall or any
legitimate criticism from using the CDC surveillance data for making
these kinds of determinations? What criticism, if any, would there be
from using your surveillance data?
DR. FENTON. Thank you very much. The surveillance data that we
have at the Centers for Disease Control and Prevention is specifically
designed to assist us in tracking the evolution of the HIV and AIDS
epidemic in the United States. This is a dynamic epidemic, and certainly
as has been mentioned by Ms. Crosse, more recent changes in the
epidemic have indicated that individuals of minority status and more
women are affected by HIV. Therefore, it is very difficult for us to
specifically state that our surveillance systems are going to be
appropriate necessarily for informing formulas, per se, for the funding
formulas.
MR. DEAL. Okay. Dr. Duke, very quickly, is there any concern on
your part about using the CDC surveillance data as a basis for
determining allocation of funding?
DR. DUKE. One of the principles that we put forth in looking at
opportunities to serve the neediest first is the opportunity to develop a
severity of need index, which would be a nationwide quantitative
approach, which would allow us to inform our decisions about where the
need is greatest in a way that we don't have now. So the severity of need
index I think is an important element of getting to serving the neediest
first.
MR. DEAL. Thank you. Mr. Waxman. I was just going to go down
the line.
MR. WAXMAN. Okay. Thank you very much, Mr. Chairman.
Dr. Duke, would you agree that in this reauthorization, although we
certainly need to address the demands brought about by more recent
changes in the epidemic, it is critical that we not destabilize the currently
existing systems of care by shifting funds away from those systems?
DR. DUKE. I think that we have been very fortunate in this country
that the Act has provided for the development of systems of care that are
very important. One of the things that I think is critical in this
reauthorization is that we all need to work together to recognize the need
for both stability on the one hand, but also the need for equity for the
patients on the other. I believe that in a deliberative process working
together we can find that balance.
MR. WAXMAN. The Administration has proposed the establishment
of a new set of core medical services. Under this proposal, grantees
would be required to spend 75 percent of all their Ryan White funds on
these core services. It has been difficult for stakeholders and Members
of Congress to react to this principle with anything other than concern
because the Administration has failed to provide any guidance on one,
what exactly a core medical service might be, and two, why we might
need a new definition under the Act. The Administration suggested only
that a core medical service include basic primary medical care and
medication needs of individuals with HIV/AIDS. It is a service that is
clearly life-prolonging and essential to maintaining physical and mental
health.
Based on the Administration's limited statements, I think we can
safely assume that certain medical services would be included in the
definition of core medical services. For instance, it is clear ADAP
medications would be covered. It is less clear where the Administration
stands on numerous services that we could all agree are life-prolonging
and essential to maintaining physical and mental health. For example,
would you agree that the following services that are undoubtedly life-
prolonging and essential for many individuals should be considered core
medical services: medical nutritional services, substance abuse treatment
services, mental health services, and case management services?
DR. DUKE. As we look at the definitions of core medical services,
we are aware that there are many definitions when you look at different
articles across the list of publications. But you do find that there are
certain common elements that arise in most lists. For example, you do
find case management in most lists, you find support for substance abuse
and mental health in most lists. What we are looking for as we work
together to define this concept of core medical services is to try to find
where the best balance is, and that is why--
MR. WAXMAN. Well, let me ask you specifically, would the concept
of core medical services include medical nutritional services? Yes or no.
DR. DUKE. I, at this point, don't know the final answer on that. I
think that is what we are in the process of deliberating.
MR. WAXMAN. How about substance abuse treatment services?
DR. DUKE. Many of the definitions include substance abuse and
mental health services along with case management and medications and
so forth. That is, I think, the process of deliberation that we are trying to
come to a conclusion on that definition.
MR. WAXMAN. Thank you.
Mr. Chairman, my time is expired. I will have more on a second
round.
MR. DEAL. I thank the gentleman. Dr. Burgess.
MR. BURGESS. Thank you, Mr. Chairman.
Dr. Fenton, if I could ask you, what would you estimate to be the
number of people who are infected with HIV who are unaware of that
infection?
DR. FENTON. It is currently estimated that there are between a
million to 1.2 million individuals living with HIV in the United States,
and approximately a quarter of these individuals, between 250,000 to
312,000 who are unaware of their HIV status.
MR. BURGESS. That obviously underscores the importance of
testing.
Do you have any thoughts on the availability of a rapid test for HIV?
DR. FENTON. Yes, we are very much aware that rapid tests are
actually available for HIV testing and we are, in fact, delighted with the
President's initiative in the next financial year, which is seeking to invest
additional funding to promote rapid testing in the United States. In fact,
there are plans for an investment of $93 million into promoting rapid
testing for HIV, with the explicit objective of ensuring that more
individuals are aware of their HIV status. In this initiative, we are
looking at promoting rapid testing, not only in community settings, but
also in jails, as well as among injecting drug users.
MR. BURGESS. So it is the CDC's opinion that this would be a
positive effect on controlling the spread of disease?
DR. FENTON. Absolutely. We estimate that a substantial portion of
new HIV diagnoses are actually transmitted by individuals who are
unaware of their HIV status. We also know from published literature
that individuals who are aware of their HIV status are more likely to
adopt safer sexual behaviors, thereby reducing the risk of HIV
transmission. Therefore, any efforts to increase HIV diagnosis among
the undiagnosed are welcomed.
MR. BURGESS. You mentioned some of them, but do you think there
is a role for this rapid testing in settings such as emergency rooms, labor
and delivery rooms, maternity clinics?
DR. FENTON. Absolutely. I think that all medical settings that we
can avail ourselves of promoting HIV testing should be taken advantage
of, and indeed, CDC is proposing new recommendations to advance HIV
testing in both clinical as well as non-clinical settings. Later this year,
we should be publishing revised recommendations for HIV testing in
clinical settings in which we actively encourage a range of clinical
settings to offer HIV testing.
MR. BURGESS. How does the testing itself fit into the overall Ryan
White Act as you understand it?
DR. FENTON. To the best of my knowledge, I am not able to
comment on the direct link between testing and the Ryan White CARE
Act; however, clearly any initiative to increase HIV testing will have an
impact on the number of individuals who are diagnosed with HIV and
subsequent individuals who will be seeking care for their HIV disease.
MR. BURGESS. Thank you, Mr. Chairman. My time has expired.
Are we going to have a second round?
MR. DEAL. If time permits, yes we probably will have a second
round.
Mr. Pallone, you are recognized.
MR. PALLONE. Mr. Chairman, as I mentioned in my opening
statement, I am very concerned about some of the recommendations that
the Administration has proposed for reauthorization of the CARE Act,
and specifically of concern is the recommendation of eliminating the
double counting. My concern comes from the fact that the
Administration has been very vague in talking about their principles and
has not really provided any level of detail about their recommendations,
so that is why I am glad that Dr. Duke is here today.
Correct me if I am wrong, but is the Administration proposing to
eliminate the double counting in Ryan White by allocating all Title II
base funds solely on the estimated living AIDS cases in the State that are
located outside of Title I EMAs? That is my basic question, because if
that is true, you know, I would like you to follow up with the impact that
that proposal would have on States that are likely to have the highest
prevalence of HIV/AIDS. And if you want to, I could explain what I am
concerned about with regard to New Jersey if you like, Dr. Duke.
DR. DUKE. Thank you. That would be helpful.
MR. PALLONE. Well, in New Jersey, we have five EMAs according
to the GAO report that was put out several months ago. Nearly 85
percent of estimated living AIDS cases in New Jersey reside in an EMA.
Now, I have a chart that was developed by a group of our State's AIDS
directors, and they say that New Jersey would stand to lose 24 percent of
its Title II based grant. It could probably even be more than that. So my
concern is the Administration's intention. Are they going to, because of
this double counting elimination, would they eliminate 24 percent of the
funding from New Jersey which is fifth in terms of reported HIV/AIDS
cases.
DR. DUKE. As a native of New Jersey, I am aware of the superb job
that New Jersey has done.
I think that another way of addressing this is to look at the approach
that we have taken to try and address the neediest first and to ensure that
we provide lifesaving and life-extending services. And that is linked to
this concept of a severity of need index to replace the kind of approach
we have taken in allocating funds in Titles I and II. The severity of need
index that would be geared toward the provision of core medical services
would provide a nationwide quantitative approach to the allocation of
funds, and would then allow us to allocate the funds in both Titles I and
II in a way that I think would be fair to the patients in the States across
the Nation. I think that is what we are trying to do is to work with the
Congress to find that way of providing a focus on the patients but gets
the funding to those patients, wherever they are.
So I don't see it in terms of punishing one jurisdiction or favoring a
jurisdiction--
MR. PALLONE. Well, let me ask you this. Have you estimated the
impact on States with EMAs? In other words, I mean I have no
information. No information has been shared with Congress about that.
I mean, could you provide that kind of analysis to us about what this
eliminating double counting, what the impact would be on States with
EMAs?
DR. DUKE. Well, at this point to develop the severity of need index
would be our first order of business, which would then be crucial to that
concept. We aren't there yet in the sense of developing a nationwide
quantitative approach to severity of need. So we are in a transition phase
from the existing approach to the really complex formulas in Titles I and
II and the complex interactions that Ms. Crosse outlined in the GAO
report. It is an incredibly complex set of interactions that have happened
as a result of the way that the Act has grown up.
MR. PALLONE. But how are you proposing to eliminate the double
counting? I mean, how are you proposing to do that?
DR. DUKE. Well, one of the ways would be first to get to the
severity of needs index, and then to work on the idea that we would
provide that as the crucial element which would be the key to awarding
funds in Title I and also in Title II.
MR. PALLONE. I just want you to understand, I mean, I am just
concerned about the impact on States that have the highest prevalence,
and it is still not clear to me, you know, what this is all going to mean.
DR. DUKE. My sense is that when you have high prevalence and
high incidence, the need to get to a standard that recognizes both the
incidence in the sense of new cases, plus the existing cases is where we
need to go, while we are also in the process recognizing poverty and
other elements to produce this--an approach that allows us to recognize
cases regardless of where they are.
MR. PALLONE. Thank you.
MR. DEAL. Ms. Bono, you are recognized for questions.
MS. BONO. Thank you, Mr. Chairman. I am happy to follow after
my colleague, Mr. Pallone, because I think we are on the same line of
questioning, and for me, that means some confusion already as to the
funding formulas.
Double counting, is that the same thing that we are talking about
with 80/20 provision, or is this entirely separate?
DR. DUKE. The double counting, as Ms. Crosse indicated in her
opening statement, gets at the issue of States that have EMAs get funding
from the amount of money that is provided in Title I. So that $604
million gets allocated to the existing 51 EMAs. Then in Title II, the
allocation to the States then is allocated to the States based on the 80/20.
MS. BONO. Okay. So based on the GAO report on Title I and II
funds, there was in year 14 an overall allocation of $4,783 per estimated
living AIDS case with a range from $3,338 to on the high end, $7,275
per estimated living AIDS case. My staff has taken a State and projected
the impact of eliminating the 80/20 provision, and based upon that data
given in the GAO report for Title I and Title II, eliminating that
provision actually increases the disparities in funding. The overall
allocation remains at $4,783 per estimated living AIDS case or ELC, but
the range increases dramatically from a minimum of $3,511 to a
maximum of $13,780. Is my staff the only one who is getting this sort of
math?
DR. DUKE. If I might, I could defer that question to Ms. Crosse who
has that report with her.
MS. BONO. Okay, thank you.
DR. DUKE. Thank you.
MS. CROSSE. I am afraid we don't have the particulars of the kind of
analysis that you are looking at. When we did our analysis, we examined
the funding that was provided to those States that do have EMAs. We
did not do an analysis that eliminated the current provisions of the CARE
Act to examine what occurred if any double counting was completely
eliminated. That was not part of the analysis that we carried out. We
examined, for example, the States that had relatively comparable
numbers of cases could receive, under the current provisions, quite
different funding levels if they had an EMA or if they did not. So for
example, Connecticut and South Carolina that have relatively equal
numbers of cases used in the formulas do not receive equal levels of
funding, because Connecticut has EMAs and South Carolina does not.
But we did not carry out an examination of what would happen if double
counting were eliminated.
MS. BONO. But you are proposing that?
MS. CROSSE. We are suggesting that the Congress needs to review
the impact of that double counting as it revises the CARE Act. We did
not specifically recommend that it be totally eliminated.
MS. BONO. Okay. So we definitely have our battles ahead of us
from California.
Turning really fast to ADAP, and Dr. Duke, again, how many
ADAPs currently have waiting lists for drugs?
DR. DUKE. The last report I saw was toward the end of March, and I
believe it was 13 States.
MS. BONO. And do those waiting lists represent all individuals not
being treated?
DR. DUKE. They represent the individuals who have not been able to
access the formulary that the State provides.
MS. BONO. So is the President in his principle for development of a
Federal list of core medication, does that address the ADAP waiting list
issue?
DR. DUKE. There are several features that address the waiting list
issue. One is in the current '07 budget. There is a $70 million request
for an increase that would address the waiting list and would address the
possibility that more testing would bring more people into care, and
therefore the $70 million is designed to help address those new cases as
well.
MS. BONO. Terrific. Thank you, Mr. Chairman.
MR. DEAL. Thank you. Ms. Capps, you are recognized for
questions.
MS. CAPPS. Thank you, Mr. Chairman.
In my opening remarks, in mentioning those of us who are from
California, Mr. Waxman, Ms. Eshoo, and myself, I hadn't seen Ms. Bono
come in, and I think it is very important that you recognize that there is
tremendous bipartisan interest and support for the reauthorization of the
CARE Act. And to underscore the fact our staff has been looking at
numbers in a bipartisan way, we estimate that if this change in
numbering should go into effect, and you did put the burden, and it is our
responsibility on us that 62 percent of reduced funds would come to
California. That is a cut and is a huge change in the kind of support that
we have come to depend upon from the Ryan Act.
I want to turn my time to you, Dr. Fenton. According to current law,
by October 1, 2006, all data accepted by CDC has to be accurate and
reliable. CDC has stated that an accurate and reliable system is a name-
based data collection; however, some jurisdictions like California that do
not have a mature name-based system will be caught here. They may
face the loss of Ryan White CARE Act funds for their HIV and AIDS
communities. Is the CDC going to work with State AIDS offices to
develop a proxy for States to submit HIV/AIDS counts so that their Ryan
White programs are not drastically hindered?
DR. FENTON. Thank you very much.
May I just begin by saying that we are delighted and indeed very,
very pleased that California has, in fact, shifted and now has begun
progress towards name-based reporting. And yes, your concerns are
absolutely on target.
One of the key issues that CDC has been doing is working with
States which have recently transitioned to ensure that this transition
process to name-based reporting goes as quickly and as efficiently as
possible.
MS. CAPPS. Let me get real specific. Have you had discussions with
the almost 20 State AIDS offices in this situation to discuss possible
solutions? Can I go to them and see that they have a plan that you are
working out with them for this interim basis?
DR. FENTON. I have been reassured that yes, you can. All these
States have a comprehensive transition plan.
MS. CAPPS. Thank you.
If the current formula uses estimated rather than actual living AIDS
cases, according to discussions with the California State Office of AIDS,
using estimated cases undercounts my home State's true disease burden
by approximately 30 percent. Has CDC considered using actual living
AIDS cases in a proxy formula?
DR. FENTON. Unfortunately, it is the best data that we have using
reported HIV cases. It is not within our purview to look at formulary for
proxy cases.
MS. CAPPS. So then if you are going to continue using this system,
we will estimate that there are 30 percent more cases actually in
California than you are counting in this way. Is there some other proxy
system that you would be willing to consider in the goal of getting an
accurate count?
DR. FENTON. I am once again very guided by the law on this, and
the regulations which have been stated regarding how the funding
formulas are actually enacted. I would like to reiterate that we are
committed to working with California to ensure that the transition to
name-based HIV reporting is done as quickly and as efficiently as
possible.
MS. CAPPS. So if there is no law, then does that mean that you are
looking to us for guidance in this interim state, to develop a proxy
counting method that we can use until we have the mature name-based
system in place, which we hope we can do, that will accurately reflect
the actual number of people living with HIV and AIDS in our State?
I have 20 seconds left, and Ms. Crosse, I just wanted to ask, for
example, California, which is ranked 18th on the list of RWCA
allocations per ELC, receives less money per ELC than States like South
Dakota, Alaska, Montana, and Wyoming. Have you completed an
analysis of funding in all parts of the Act that provide core medical
services to people with AIDS?
MS. CROSSE. Ma'am, our review focused on the Title I and the Title
II funding. The ranking that you referred to, I just became aware of
yesterday. Those States, the top of the list that you mentioned, are those
that qualified for minimum grant funding to be able to mount any sort of
a program at all. So for example, Montana receives a minimum grant
amount of $500,000 even though it has an estimated living AIDS cases
of fewer than 150. And so its relative ranking in the per case funding is
quite high because it has that minimum grant amount provided to it. We
have not looked at the non-formula based funding amounts that are
awarded through competitive grants. Some of those funding amounts are
not for services to HIV/AIDS patients and their families. They are for
research or for training of healthcare workers, which are very important
functions, but are not part of the services that are provided to patients.
Some of them are for services, some of the Title III and Title IV funds,
for example, but those funds are on the basis of competitive grants, not to
States and jurisdictions to control the distribution, but are based on
successful grant writing by different entities throughout the country.
MS. CAPPS. Thank you. I hope we will conclude all of this data as
we look at our reauthorization. Thank you.
MR. DEAL. Mr. Pitts, you are recognized for questions.
MR. PITTS. Thank you, Mr. Chairman.
Dr. Duke, are there any caps on administrative costs for grantees
under current law?
DR. DUKE. Yes, sir, there are. There are a variety of caps as you go
across the Titles, there are different caps in Titles I, II, and III. There is
no cap in Title IV, and those vary from generally 5 percent to 15 percent.
MR. PITTS. You testified that States will be encouraged to adopt
prevention strategies upon receipt of their Ryan White allocations. Do
you have the current authority to require States to demonstrate this as a
condition of their grant approval?
DR. DUKE. We encourage prevention as a matter of the work we do
today. We believe that part of our role is to ensure that we take steps to
limit the spread of the epidemic. So we take prevention steps now, we
are very consistent with our sister agency's prevention initiative, and so
prevention is part of what we do now. What we hope to accomplish in
the future is more use of rapid testing to identify those persons who do
not know their status now or who know their status and who aren't in
care to get them into care, not only for their own longevity and quality of
life, but also to prevent the spread of disease in the community.
MR. PITTS. Isn't it true that while there are eligibility requirements
to receive EMA funding, 29 of the 51 EMAs do not actually meet this
criteria today?
DR. DUKE. At this point, 29 of the 51 do not.
MR. PITTS. How do the Title IV grantees receive funds from HRSA,
and how is that different from other grantees under the other Titles?
DR. DUKE. Titles III and IV are grants to community-based
organizations, and they are competitive grants, that is to say, we provide
guidance about what we are hoping to do in prevention, early
intervention, capacity building, or services to families of those with
AIDS, and we provide that guidance as a way of opening competition to
serve the needs that we identify in that guidance, those competitive
applications come in to us. They are reviewed by an objective review
committee, and those funds then are awarded for services to the
community by community groups.
MR. PITTS. Ms. Crosse, the hold harmless provisions were added in
the 1996 reauthorization of the CARE Act, and you testified that they
were added to accommodate the large shifts of funding from jurisdictions
with a longer history of the disease than other jurisdictions that would
have occurred. Can you tell us which EMAs and States would have
otherwise experienced a large shift of funds from their jurisdictions at
that time?
MS. CROSSE. Yes, sir. In 1996, the way in which cases were
counted was changed from a cumulative count from the beginning of the
epidemic to an estimated living cases, and that had the potential to
impact jurisdictions. At that time, only one jurisdiction, San Francisco,
was held harmless for its funding from under the Title I provision. At
the current time, there are larger number of jurisdictions that are
protected by the hold harmless provision, however, the bulk of that
funding is still for San Francisco. Kansas City is the next largest
jurisdiction EMA that receives hold harmless funding. But about 94
percent of the hold harmless funding goes to San Francisco under Title I.
MR. PITTS. And you stated that HHS generally agreed with GAO's
identification of issues in the funding formulas. Did HHS disagree with
any issues?
MS. CROSSE. No, sir, they did not disagree with any of the matters
that we raised for consideration by the Congress as it considers the
reauthorization of Ryan White.
MR. PITTS. Thank you, Mr. Chairman.
MR. DEAL. Thank you. Mr. Towns, you are recognized for
questions.
MR. TOWNS. Thank you very much, Mr. Chairman.
Let me just also join some of my colleagues who have indicated
about the possible loss. New York State would probably lose 60 percent
of its funding, probably a little more than $23 million, which is
something that we are extremely concerned about. I just want to make
that point. But also again, Mr. Chairman, I really think it is important
that we have this kind of discussion to be able to move forward.
Let me ask you, Dr. Duke. I notice that the Secretary has the ability
to change five percent of the funding, and of course, at any point in time.
What would precipitate this action, changing from one category to
another? What would precipitate it?
DR. DUKE. Sir, the current structure of the Act, because it is based
on a series of formulas, can produce some inflexibilities that make
administration of the Act by the requirements of the law go where
perhaps the Congress didn't intend it to go in the sense that because of
the various provisions, some States can't actually use the money that we
provide, either because they can't make the match or because their
caseload is significantly lower. But we have at this point no authority to
take that money and reallocate it to other jurisdictions that might need
that money, so indeed, it returns to the treasury.
MR. TOWNS. I am not quite sure. If you discovered that there was a
crisis in a given area, could you do it, for instance, that all of a sudden
you discover that something is going on that you had no knowledge of,
then could you, in turn, allocate it for that?
DR. DUKE. No, sir. The requirements of the law require us to
allocate money based on the formulas, and so we have some
inflexibilities which we are attempting to, in our principles and also in
the budget request, to get the kind of flexibility that would allow us to
respond to some unforeseen situation. The example I might use is a few
years ago, we became aware of the rise of waiting lists in States, and the
President announced a desire to meet those emergencies with the waiting
lists, and that required a very complex set of reprogrammings and
Congressional action, and took quite some time to do. And so that really
was one of the things that triggered us to think that perhaps we needed to
build in some flexibilities or request some flexibilities in this
reauthorization that might allow us to respond to situations in the future.
MR. TOWNS. What about supplemental grants?
DR. DUKE. The supplemental grants operate on the basis of a
formula also in Title II, so we don't, again, have the flexibility to move
those monies to a particular area of new concern or to a crisis. We don't
have that flexibility. The law requires us to allocate funds based on the
formula.
MR. TOWNS. Would you like to have that flexibility?
DR. DUKE. Yes, sir, we would. We would like to have flexibility
that would allow us to respond, and that is the request to allow the
Secretary to shift funds across the Titles, five percent of the funds from
any one Title to any other Title to respond to emergencies.
MR. TOWNS. Thank you.
Ms. Crosse, why hasn't there been a full GAO report on Ryan White
including Titles III, IV, and Part F?
MS. CROSSE. We were guided by the requests that we received from
Members of Congress who specifically asked for us to review the
funding formulas in Title I and Title II, but in addition, that accounts for
the bulk of the funding. That is the funding that is linked to specific
counts of AIDS cases. The funding under other Titles, while it can be
based on that in a grant application, is not linked to the prevalence of the
disease in a particular community, but rather is based on the types of
services that the grantee is proposing that they would provide and their
successful competitive grant application. So it is only the Title I and
Title II funding that automatically goes to jurisdictions based on the
prevalence of the disease as encoded in those formulas. So we felt and
were requested specifically to look at those components that account for
about 80 percent of the Ryan White monies.
MR. TOWNS. All right, thank you.
Dr. Duke again, we know the statistics demonstrate that racial
minorities are more likely to be victims of the AIDS epidemic. How
effective has the minority AIDS initiative been in increasing access to
prevention and care for racial minorities with HIV?
DR. DUKE. The opportunity to use those funds in a targeted way has
been very useful to us. If we look at the populations we serve, we note
that we serve about two-thirds of our patients are minorities. A third of
them are women. And so we have been able to use those funds very
well, and we appreciate having those funds.
MR. TOWNS. Do you think it needs to be strengthened?
DR. DUKE. We have been very pleased with the allocations we have.
MR. TOWNS. So you don't think it needs to be strengthened?
DR. DUKE. We believe they are very strong and we are grateful for
them. We recognize the wisdom of the Congress in the allocation of
those funds.
MR. TOWNS. Let me put it this way. We have a problem, as you
know. What can we do to assist you in bringing about a solution to this
problem?
DR. DUKE. We believe that the principles we proposed for the
reauthorization will help us address those problems because we believe
that the changes we propose will allow us to target our resources more to
where the AIDS epidemic has gone, and therefore, we can address the
needs of minority populations all across the country.
MR. TOWNS. Let me--I gather this morning--I mean, this is sort of a
dialogue we had in here this morning. There are some people that are
dying every day. I think we need to do everything that we can to prevent
that, and that is the reason why we don't want to have a very open
discussion here, because I think that we can do a lot better than what we
are doing, and in order to get there, we have to have an open discussion
about it and you know, I am not challenging you in any kind of way. I
am on your team, and I want you to know that, but I think you have to be
open and honest with each other in order to get to where we need to go,
and that is the point I am going to make, Mr. Chairman.
DR. DUKE. Bless your heart. I couldn't agree with you more, sir.
That is what we hope to have is a dialogue with you so that we come to a
reauthorization that we know we all want that will advance the needs of
our patients, and I appreciate being here to work with you and to have
that dialogue.
MR. DEAL. The gentleman's time has expired.
Ms. Eshoo, you are recognized for questions.
MS. ESHOO. Thank you, Mr. Chairman, and thank you to the
witnesses for their responses.
I want to walk through this--maybe this is a Ryan White CARE Act
101. I think that when we go through these hearings, it is in many ways
a refresher course for the members as well.
When you go through the Titles, it is important to remember that
Titles I and II deal with the EMAs, the eligible metropolitan areas. Titles
III and IV pertain to States that don't have the EMAs. They work off of,
as I understand it, the ELCs, the estimated living cases. Now, the GAO
report, in my view, looked narrowly at the funding mechanisms for only
Title I and II, which seems to be the heart of the discussion here and the
responses Members have made, both in terms of their opening statements
and their lines of questioning. The GAO report did not consider funding
for Titles III and IV, so they have left out much of the picture. I mean, it
was targeted, it was narrow, and it is interesting what they have done, but
I think it is skewed because when you look at what is left out, the GAO
looked at, obviously, the major cities. And that is where the heavy
caseload is. That is where most of the AIDS cases are.
Now, as far as I am concerned, I don't want any area of the country
left out. I mean, whether someone lives in South Dakota or in Georgia or
in San Francisco, we have a collective obligation to take care of our
people. But it is very interesting to look at the ranking in descending
order by total award per estimated living AIDS case and the monies that
flow. Those States that don't have, again, the EMAs but are funded
through the ELCs, at the top of the list is South Dakota. Mr. Chairman,
your State, Georgia, the total award is $66,540,052. The minimum
award, $11,226.
So I think what I would like to do is to enter this report by the
Communities Advocating Emergency AIDS Relief into the record,
because this repot tells the other half of the story. In fact, if we are only
going to consider Titles I and II and dismantle funding that is contained
in that, which I think picks on the larger areas in the country and really
causes the upset that several Members from both sides of the aisle have
spoken about, we really have to take a look at and appreciate what other
States are getting through another set of dollars that flow through what
are known as the ELCs, and they are not insignificant funds, which I am
pleased to highlight.
I don't think I have a question. I think it is important to get this into
the record, and now, for members that represent these States, South
Dakota, Alaska, Montana, these are the ones that are at the top. South
Dakota, Alaska, Montana, Idaho, Wyoming, Vermont, Massachusetts,
North Dakota, Colorado, Missouri, Pennsylvania, Washington, Maine,
Rhode Island, Illinois, New Mexico, California, Iowa, Minnesota, I
mean, these are the States that are, when you look at the funding, it really
tells the other part of the story. So my point is, why are we picking on
the larger cities that have the kind of funding that we have examined here
in Titles I and II, with the suggestion that it is needed because other
places in the country are really suffering as a result of the funding that
they get? It is not the story, it is not the complete picture.
We need to enlarge on this and I think broaden the discussion, Mr.
Chairman. We need to be talking about funding of the Titles across the
board. I, again, appreciate the fact of what GAO did, but understand that
what GAO did, it was directed by some Members of Congress to only
examine those two Titles and the funding that flows from them. So it is
not the complete picture. And I think that if we only limit ourselves to
that, that we are going to be doing damage. We are going to do severe
damage, and I don't think that that is the intention of the committee at
all.
Now, if anyone on the panel wants to comment on what I have just
said, I would welcome it, but you have your constraints from where you
come from. I can tell by the answers. And I appreciate your
professionalism, but so if anybody wants to weigh in on this, do, but I
think all the members of the committee need to broaden their thinking on
this thing.
MS. CROSSE. Ma'am, I will respond. We examined Title I, which is
all of the funding for the eligible metropolitan areas--
MS. ESHOO. Right.
MS. CROSSE. --Title II, which is the funding for the States and
territories.
MS. ESHOO. Right.
MS. CROSSE. But those are the funds that are distributed through the
formulas using the ELCs. All of the funding that is distributed on the
basis of ELCs is distributed under Titles I and II that we examined.
MS. ESHOO. I understand that.
MS. CROSSE. Titles III, IV, and other special provisions do not use
case-based distributions of funding.
MS. ESHOO. Yes, but I want to reclaim my time. My point here is
that there seems to be, at least in my view, it may just be me, that there is
a suggestion here that if you don't come under these funding formulas
and if there is a grab, so to speak, by larger cities in other areas, that
other places in our country are suffering from it.
When you look at the funding here, that is not the case. There is
excellent, which I am pleased to point out, funding for these other areas.
So, this I think goes directly to this whole issue of the principles and how
we need to shift the money around. I don't think we do, because it seems
to me that there is excellent funding for other States, and the Chairman's
State is kind of right in the middle here, but boy, when they get these
grants, it is taking good care of people.
So, Mr. Chairman, I think we need to talk about the other Titles as
well, and I would like to ask unanimous consent that this report be placed
in the record.
MR. DEAL. Without objection.
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MR. DEAL. The gentlelady's time has expired.
Mr. Shimkus is recognized for questions.
MR. SHIMKUS. Thank you, Mr. Chairman.
Ms. Crosse, can you just go over those Titles one more time? You
were unable to finish and I would like to hear the rest. Just start with
Title I again.
MS. CROSSE. Yes. Title I is the grants to the eligible metropolitan
areas, the cities that have had a cumulative AIDS case count of over
2,000 in the past five years or who are grandfathered in because at one
time they met the criteria. Title II is grants to the States and territories.
Those include the funds for State programs for areas outside of the
eligible metropolitan areas, and for the AIDS Drug Assistance Programs.
Title III is a competitive grant program, early intervention services,
capacity, development, and planning grants, and those go to primary care
providers, including health centers, city and county health departments,
and outpatient medical centers. Title IV is services for women, infants,
children, youth, and their affected family members. That also is a
competitive grant process. Those grants are awarded to healthcare
facilities, public health agencies, and community-based organizations
that serve the target populations. In addition, there are funds that I
believe are included in the figures that Representative Eshoo refers to
under special projects of national significance that are awarded
competitively to university and community clinics, evaluation centers,
local and State health departments, community-based organizations, and
nonprofit agencies to carry out the development of innovative models of
delivery of care. And there are 15 national and regional centers for
AIDS education and training of healthcare workers; those funds are also
included in her accounting. That is to educate healthcare workers on
how best to treat patients with HIV and AIDS. And there are dental
programs that are provided, both for education of dental care providers,
and for the provision of services to HIV and AIDS patients.
MR. SHIMKUS. And we just had the dentists here in town this week
talking about some of those provisions, and I appreciate that.
I am going to turn to Dr. Duke, but before I do that, I want to
relate a story. I have been focusing a lot this month on Medicare D issues,
and there are 19 days left for signup, but I have an HIV constituent who is
now saving $15,000 a year by being able to access the prescription drug
benefit. It has changed his ability to survive in the world today and he is
very grateful. That came on the heels of--and an elderly lady who now,
for the first time in years, is able to afford automobile insurance and she
is back driving where she had to stop paying automobile insurance
because of her prescription drug costs. So I know it is not your area, but
it does talk about the ability to access prescription drugs, and not a
perfect situation, but those people are accessing it. And it is just
important for me to use the bully pulpit at this time to encourage people
to make sure that they sign up on time to access this if they can.
Dr. Duke, I have got a question. I represent southern Illinois, a large
rural district, but I actually border three States. I border the State of
Missouri, I border the State of Indiana, I border the State of Kentucky.
And on the AIDS Drug Assistance Program, how many AIDS Drug
Assistance Programs currently have waiting lists for drugs?
DR. DUKE. The most recent report I saw was right around the end of
March, and I believe there were 13 States on that list at that time.
MR. SHIMKUS. Do these waiting lists represent all individuals not
being treated?
DR. DUKE. They represent those who are not able to get drug
assistance from the States.
MR. SHIMKUS. So they may be getting treated, but they are just not
getting the drug--that is my question. Are they getting treatment?
DR. DUKE. There is treatment available, but the treatment that is
preferred is medication, and the medications are quite expensive.
MR. SHIMKUS. Is it true that an individual eligible for ADAP
services in one State may not be eligible for it in another State?
DR. DUKE. The ADAP programs are set up differently in the
different States.
MR. SHIMKUS. And why?
DR. DUKE. The Nation--
MR. SHIMKUS. Nice grin.
DR. DUKE. The Nation--
MR. SHIMKUS. This is a policy debate here.
DR. DUKE. The Nation is a Federal system, and we have, through
the Ryan White CARE Act, a Federal system which says different States
operate differently and we try to reflect the Federal system in the way
that legislation is passed, and we implement that legislation as it is
passed.
MR. SHIMKUS. And I am a supporter of federalism, but again, when
you have an individual constituent or consumer, and again, you border
three States, it really could be, you know, the metropolitan St. Louis
community, but it is a metropolitan statistical area in essence, although
Missouri sometimes doesn't want to accept us, many of us that live 15
minutes from Busch Stadium feel that we are as much a part of the St.
Louis community as anybody else. If there is a differential and treatment
options for an HIV citizen in St. Louis versus, you know, in Granite City,
Illinois, then it is problematic for many of us policymakers.
DR. DUKE. One of the principles that we have worked on with the
Congress in the concepts of reauthorization is to try to find some way to
equalize treatment as you go across the country so that patients in any
one of the three States you have mentioned would in essence be eligible
for equal treatment under the provisions of the Ryan White CARE Act.
So the principle you have asserted is one that we obviously agree with in
our approach to this reauthorization.
MR. SHIMKUS. Great. I appreciate your testimony and look forward
as we move the process forward.
Mr. Chairman, I yield back my time.
DR. DUKE. Thank you.
MR. DEAL. I thank the gentleman.
Mr. Rush is recognized for questions.
MR. RUSH. Thank you, Mr. Chairman. Mr. Chairman, I don't know
whether or not you have already provided this, but I would ask for
unanimous consent to insert my opening statement into the record.
MR. DEAL. Yes. I would, at this point, say that I would ask the
same unanimous consent for both those people who are here or those
who are absent, and without objection, that will be so ordered.
[Additional statements submitted for the record follows:]
PREPARED STATEMENT OF THE HON. BOBBY RUSH, A REPRESENTATIVE IN CONGRESS FROM
THE STATE OF ILLINOIS
Mr. Chairman:
I want to thank you for holding this hearing to give the Members of
the Subcommittee the opportunity to examine the Administration's principals
for reauthorizing the Ryan White Care Act, which were unveiled in July of
last year (2005).
The Ryan White CARE Act is the nation's largest, most successful and
most important source of discretionary federal funding for HIV/AIDS related
services. The CARE Act funds primary health care and support services for
people with HIV/AIDS who lack health insurance and financial resources for
their care. Congress first enacted the CARE Act in 1990: the ACT was
reauthorized in 1996 and again in 2000.
Each year, the CARE Act programs reach more than 500,000 individuals
with or at risk for HIV in all 50 states, the District of Columbia, Puerto
Rico, and the U.S. territories.
In Illinois, there are more than 35,000 people living with HIV/AIDS
and our communities rely on nearly $75 million a year in CARE Act funds to
provide the necessary medical and support services to low-income and
under/uninsured individuals living with the disease. Chicago ranks sixth in
the country for urban areas most impacted by the HIV/AIDS epidemic, with
approximately 28,000 people living with HIV disease in the Chicago Eligible
Metropolitan Area (EMA).
Despite the improvements in the health outcomes of AIDS patients in
the general population, in communities of color AIDS is the leading cause of
death of African American women between the ages of 25 and 34 and the third
leading cause of death among Hispanics between the ages of 35 and 44.
It is in this reality, and in the absence of new funding to expand
the provisions of the CARE Act to meet the increasing need, that this
Committee is challenged to design a reauthorization bill that equitably and
effectively maintains the quality of care for those who are suffering from
HIV and AIDS.
I am not convinced that adoption of the set of principles outlined
by the Administration will help us achieve that objective.
For example, the President's principles for CARE Act reauthorization
call for no-less than 75% of all CARE Act funding to be directed to "core
medical services." The debate that has ensued in my district in Chicago and
the south suburbs centers on what the appropriate mix of services is and what
services constitute "core medical services."
The President's principles also call for the development of a
"severity of need index" that would factor new HIV cases, rates of poverty
and other public and private resources available for HIV/AIDS as part of CARE
Act funding-distribution formulas. For my state - Illinois - that has made
significant investments of state tax dollars to expand Medicaid eligibility,
keep the Aids Drug Assistance Program (ADAP) strong, and increase the
availability of prevention services, a "severity of need index" would seem to
penalize these investments.
These are just a few of the questions that I, and my constituent have
about the administration's principles for reauthorizing the Ryan White Care
Act. I look forward to the testimony of the panel before us in answering some
of those questions.
PREPARED STATEMENT OF THE HON. JOE BARTON, CHAIRMAN, COMMITTEE ON ENERGY
AND COMMERCE
Good morning. Mr. Chairman, I commend you for holding this hearing.
I look forward to working with you and the rest of the Subcommittee as we
consider how to improve the Ryan White CARE Act to ensure persons with HIV
and AIDS will continue to have access to services necessary to address their
health care needs.
The Ryan White CARE Act expired last year. This hearing provides an
opportunity-actually the imperative-to strengthen and improve it. As
Chairman, I have not supported the creation of disease-specific prevention
and treatment programs. This law is the only major federal disease-specific
comprehensive treatment program in existence. In fact, this demonstrates
some inconsistencies that come with disease-specific programs. The act funds
non-medical services that even Medicaid or Medicare will not support,
including companion services and housing. A measure of caution and oversight
is warranted, therefore, in how we spend Ryan White dollars as we move
forward. To put it simply, Ryan White dollars should go to prevent the
spread of HIV and AIDS and for their treatment. Let me be clear: every
person with HIV or AIDS should have access to core medical services. To
accomplish this goal, we need to carefully examine how Ryan White funds are
being used at every level-by cities, by states, by providers, and by
HRSA.
We should also be mindful of other inequities created under current
law. Why it is that some localities, called Eligible Metropolitan Areas or
"EMAs," receive direct federal funding although they no longer meet
eligibility thresholds? Why it is that certain EMAs receive a
disproportionate share of Ryan White funds due to outdated funding
mechanisms? Why it is that considerably more funds go to certain areas even
though they have similar numbers of cases? And why it is that the estimated
funding per AIDS case is around $5,500 for persons living in Texas, around
$6,700 for persons living in Colorado, and over $11,000 for persons living in
South Dakota? This wide variation requires some reasonable justification.
Mr. Chairman and members of this Subcommittee, these are the
fundamental questions we should address as we consider reauthorizing this
program. If we do not reauthorize this bill, the shortcomings and inherent
inequities of this program will persist. Reauthorization must be approached
responsibly, however. We have a responsibility to those who need treatment
and to American taxpayers whose dollars fund this program. In order to
guarantee that tax dollars are being properly spent, a reauthorized Ryan White
program must be more accountable, more transparent, and more equitable.
I look forward to hearing from our two witnesses from the Department of
Health and Human Services about how this program is administered and what
reforms are recommended for improvement. I also look forward to hearing the
findings and recommendation of the GAO with regards to improving this
program. Thank you Chairman Deal for calling this hearing today and I
welcome the panel of witnesses.
MR. RUSH. Thank you, Mr. Chairman.
Mr. Chairman, I want to ask Dr. Duke. I want to continue a line of
questioning that Congressman Waxman initiated, because I, too, have
concerns that Title IV would be severely damaged if funds were set aside
for core medical services which are articulated in the President's
principles as basic primary care and medications needs. Title IV is
successful because it offers a broad arrangement of family-centered
services that are essential to getting mothers to take care of their own
health, to keep children in care, to give the mom the support she needs,
like childcare and transportation, to get her kids and herself to doctor's
appointments and the pharmacy, and to reaching out to the HIV infected
youth and keeping them in care also.
So the question I have for you, Dr. Duke, is what changes would the
Administration like to see for Title IV, and more specifically, I would
like to ask, do you want this Congress to apply or set aside a provision
for Title IV funds for core medical services?
DR. DUKE. The principles that we brought to this dialogue about
reauthorization did not envision the dismantling of the Title structure of
the Act at all. Title IV, which has been very successful, would be an
important part of the Act as it is reauthorized, and as we work with the
committee around the provision of services, we would see that as part of
the dialogue what would be included in Title IV.
MR. RUSH. In another sense, there was a time in past discussions
about reauthorization of the Ryan Act I have heard from some
constituent organizations about disparity in terms of funding going to
organizations that were primarily based out of minority communities. Is
that an ongoing problem or is that problem been pretty well eliminated
now? Have there been any causes that you have recently heard of of
where there have been some problems with Ryan White CARE funds
going to, say, organizations that are located in minority communities as
opposed to some of the older, more experienced, more mature
community-based organizations and health clinics?
DR. DUKE. Sir, I haven't heard any criticism along those lines.
Indeed, we have tried to elicit engagement of all communities in assisting
with making their members aware of their own health interests in being
tested that early diagnosis is a good thing. So we have actually
encouraged outreach into communities and in the additional $25 million
that we have requested for Title III for '07, one of the themes of that
money is that we need to engage all communities in reaching out to their
members to help their members become aware of their HIV status so that
we can bring them into care.
So I am unaware of the concern you have raised.
MR. RUSH. Let me ask you this. Newer CVOs, health clinics, are
they treated any differently than more established health clinics in terms
of applications for Ryan CARE funds, Ryan White CARE funds?
DR. DUKE. Title III capacity building planning grants, all of those
are competitive and when those applications come in, they are reviewed
by an objective review committee relative to the guidance we have put
out, and there is no discrimination as to whether they are newer or older
clinics. The issue is can they meet the need of the population which we
recognize needs their services.
MR. RUSH. Are there any particular handicaps to newer
organizations that might prevent them from quickly getting into the
funding stream?
DR. DUKE. I think there are always challenges to new grantees in the
sense that they need to perhaps physically get up and running in different
space. They may need some time to set up appropriate business
apparatus or to hire needed personnel, particularly the medical personnel
who are in short supply.
MR. RUSH. Dr. Levine, I believe it is, the Secretary of HHS--
DR. DUKE. Secretary Mike Leavitt.
MR. RUSH. Yeah. He came and testified before the committee based
on the budget, okay, and he indicated that there would be 70 new
community-based health clinics, FQHCs, that would be authorized in the
budget for this year. Are you aware of that?
DR. DUKE. We are bringing up 88 new health clinics that have
competed and are up and running in '07--'06, and we have requested
from the Congress $181 million additional, bringing our primary care
health center request up to almost $2 billion. Of that, $181 million is a
request to provide new health centers in 2007 so that we would reach the
culmination of the President's expansion initiative to award 1,200 new
health centers over this five to six-year period. Within that request is a
request to provide 80 of those health centers as focused on high poverty
areas, either in urban areas or in rural areas. So we are anxious to have
more health centers, and many of our health centers are also providers of
Ryan White CARE Act as well, even--
MR. DEAL. The gentleman's time has expired.
MR. RUSH. Thank you, Mr. Chairman.
MR. DEAL. We are pleased to have the Chairman of the full
committee, Mr. Barton from Texas with us, and he is recognized for
questions at this time.
CHAIRMAN BARTON. Thank you, Mr. Chairman. I apologize for not
being here for the entire hearing. I have another hearing going on, a
press conference, and several private meetings. That is why I was not
here at the beginning. This is a very important hearing. I have some
statements to make, more than really questions. I want to let our
audience know and our witnesses know that we are going to reauthorize
this Act. There are some rumors that we wouldn't reauthorize it, but we
are. Having said that, it is not my intent to do a straight reauthorization.
I do think we need to take into account the President's priorities as have
been enunciated in the GAO study that has been put out. I think it is a
given that we want to do everything humanly possible for those
individuals that have contracted AIDS. If we can save their life or
extend their life, that is a good thing, but we do need to look at these
formulas. We do need to look at some of the non-medical services and
see if there is a way that we can make the formulas more fair and make
sure as many dollars as possible go to healthcare and prevention, and not
to some of the extraneous things that have generated some of the
negative headlines.
I guess I would ask our HHS witness, do you generally support the
findings or the recommendations of the GAO study in terms of formulas
and things like that?
DR. DUKE. Yes, sir. We find that the inflexibilities in the formula
create some inequities so that patients in one area of the country have
less access to healthcare as a result of the formulas, and so our principles
ask that we treat the neediest first, and that we extend life and save lives.
And the way to do that, I think, is to increase the flexibility and also the
accountability in the Act, and we greatly appreciate your support in
looking to reauthorize this bill.
CHAIRMAN BARTON. A general question to Dr. Fenton. Would you
say that the number of cases of AIDS has stabilized in this country and
do we seem to have a pretty good handle on the disease now? Or is it
still a disease that is growing in its impact on our population?
DR. FENTON. Thank you for your question. Although we believe
the number of new cases of HIV has remained relatively stable over the
past 5 to 10 years, we are continuing to see evolutions in the epidemic.
So indeed, more individuals who are communities of color are being
affected by HIV. We are having increasing concerns about young MSM,
manual sex with men, especially manual sex with men of color. So the
epidemic is, in fact, a dynamic epidemic. Although we may be seeing
some of the numbers of new infections occurring each year, we are
seeing changes in the character of the epidemic and the individuals who
are affected by HIV.
CHAIRMAN BARTON. Thank you, Doctor, and thank you, Mr.
Chairman. I yield back.
MR. DEAL. I thank the gentleman.
I had an error on our timing in the first go around, and I intend to
equalize the timing on Mr. Waxman, Dr. Burgess, and myself. We got
shortchanged on the first go around. With both of your indulgence, since
you are here, I have had a request from Mr. Markey. He is a member of
the full committee, and I would ask unanimous consent that he be
allowed to question the panel at this time.
Without objection, you may proceed.
MR. MARKEY. Thank you, Mr. Chairman.
First of all, it just seems to me that if we are now going to debate
whether or not we should be shifting money over from States with big
cities over to States without big cities, but keeping the money relatively
level-funded, that that then gets to be part of the debate about how big
should the tax cuts be? And otherwise, we wouldn't be having this
discussion because we would have more money to help the States
without big cities. And so you get into a fight over limited resources,
when we know that the problem is actually mushrooming as each year
goes by, as we identify an additional 30 or 40,000 people who have been
infected. So I think that is, you know, something that everyone should
understand. The President should just stop his plan to continue to
increase these tax cuts until we have enough money to take care of these
problems instead of having States fight amongst each other.
Now, Massachusetts has, under pressure, agreed to change from
having a code-based system over to a name-based system. And my
question for you, Dr. Fenton, is it is going to take 3 to 4 years in order to
complete this process. What is the status as a result of Massachusetts
beginning this October in terms of receiving the $15 million or so that
the State of Massachusetts fears it is going to lose because it will not
have completed the conversion?
DR. FENTON. Thank you very much for the question.
We are aware that Massachusetts has recently made the decision to
shift to name-based reporting, and CDC remains committed to
supporting Massachusetts to ensure that this occurs as quickly and as
efficiently as possible. We are very much committed to promoting
name-based reporting because we do believe it is--
MR. MARKEY. I know that, I'm talking just about the funding. Will
we receive the funding this October, even though we will not have had
enough time logistically to convert over from code-based to name-based
identification?
DR. FENTON. Again, I cannot comment on the amount of
appropriations that you receive; however, I can say that we will follow
the law as--
MR. MARKEY. Under the existing law, will Massachusetts be
eligible for that $15 million beginning in October, or will it not be
eligible?
DR. FENTON. I would like to defer to my colleague.
DR. DUKE. We are in the process right now of trying to sort it out.
We strongly endorse reauthorization and we are in the process right now
of trying to sort out with the lawyers what our options are in terms of
funding the States in transition. And so we will have to get back to you
for the record.
MR. MARKEY. In other words, if we do not reauthorize Ryan White
and change the law, under existing law, can you continue to give that $15
million, which is about 30 percent of all the money spent in
Massachusetts on AIDS and HIV patients?
DR. DUKE. We are in the process of trying to sort out exactly that
question. The law requires us in '07 to go to HIV reporting and to do
HIV reporting, we have to have a CDC certification that the State system
meets CDC standards. If we don't have that CDC certification, that is
what the lawyers and my staff are trying to sort out right now.
MR. MARKEY. Well, let me go back over to Dr. Fenton then. Dr.
Fenton, can you certify that Massachusetts, having made the
commitment to make the switch, knowing that logistically it is
impossible to complete it before October, won't have all of these
thousands of people victimized by having a cutoff of funding, even
though the State has indicated its intention to comply?
DR. FENTON. Again, we are committed to ensuring that the process
of transition occurs as quickly as possible.
MR. MARKEY. And so we are going to, in fact, do it and change the
system. The question is do we lose the funding while the process is
ongoing as we make the transition?
DR. FENTON. Thank you for your question. We will have to get
back to you on that question for the record.
MR. MARKEY. What is your inclination, though, from your heart,
Doctor, in terms of how these people in Massachusetts should be treated?
I know it is going to take three or four years to get all the names.
DR. FENTON. I truly empathize with the situation, the difficulties
that the transition causes all of us at the moment. I can honestly say that
we are working as hard as we can to ensure that it does occur as quickly
as possible.
MR. MARKEY. I hope that you find a way of ensuring that the
interpretation of the law takes into account the impact it will have on
thousands of HIV and AIDS victims.
Thank you.
MR. DEAL. I am going to go back and, as I said, three of us got
shortchanged on the first go around on the time. We set it at three
minutes instead of five minutes. We should have had five minutes for
questioning. Since we are going back and forth, I am going to reserve
mine until the end and I will recognize Dr. Burgess at this time for an
additional two minutes of questioning.
MR. BURGESS. Thank you, Mr. Chairman. I did think the time went
by rather rapidly, but I wasn't going to question the Chairman.
Ms. Crosse, really the only other thing I would like to ask at this
point is in your testimony, you said that Health and Human Services
generally agreed with your identification of issues and funding formulas.
Was there any area where you and the Department of Health and Human
Services differed over that opinion?
MS. CROSSE. Not as they expressed to us in their written comments
on the report. I believe that there may be details as you negotiate with
the Department in working out exactly how this should be structured that
might be more specific or vary to some extent from what we have
recommended, but in principle I believe that they--and in their comments
indicated that they were supportive of the concept of revising the funding
formulas to better reflect the current distribution of the epidemic.
MR. BURGESS. And what about as asked by Mr. Markey, was there
any heartburn with the timeline that was devised?
MS. CROSSE. Well, we were not indicating at what point this needed
to be incorporated. We do believe that it is important that HIV case
counts begin to be incorporated in order to better reflect the distribution
of the epidemic, because many individuals now who are HIV-positive do
not progress to AIDS or do not rapidly progress to AIDS, and under the
current structure of the formulas, they are not considered in the allocation
of funding because it is based on an estimate of living AIDS cases.
However, we do acknowledge in our report that there is a period of time
of transition before a system that switches to a name-based reporting
system has comparable data to a system that is fully mature, and we
recognize that that could take as much as three years for that to occur.
And so how that is incorporated and what consideration that the
Congress gives to States that do not have mature reporting systems I
think is something that warrants consideration as you reauthorize this
Act. As I understand the current statute, if you do not reauthorize,
beginning in October, those States that do not have accepted case
counting systems will have their allocation based solely on the AIDS
cases as currently exist. They will likely lose funding, however, because
that will be balanced against States where both AIDS and HIV cases are
counted. So if the pool remains the same, funds will shift to those States
that have larger case counts because the HIV cases are included. And so
how you would want to structure any period of transition is certainly
something that you have to wrestle with, I believe, as you consider
reauthorization of the Act.
MR. BURGESS. Thank you. Mr. Chairman, I would also just like to
take a second to point out, I think they have all left now, but we had a
number of students from the University of North Texas Health Science
Center here with us this morning to hear part of this discussion. I always
want to encourage those in medical school to be part of the formation of
public policy.
With that, I will yield back.
MR. DEAL. I thank the gentleman.
I recognize Mr. Waxman.
MR. WAXMAN. Thank you, Mr. Chairman.
Let me, first of all, ask Dr. Fenton and Dr. Duke, you indicated you
are going to get back to Mr. Markey to answer the question of if we do
not reauthorize the Ryan White CARE Act, how you are going to
distribute the funds regarding States that are moving to a name-based
system. When will you get back to him?
DR. DUKE. The process of discussion is ongoing, as you can see
from Ms. Crosse's response. There is one thought that talks in terms of--
MR. WAXMAN. I don't want the alternatives. I just want to know if
you are going to make a recommendation and you are going to have to
make that decision, would you tell us what the decision is going to be
and how fast are you going to make that decision so we can know it? I
am just asking the timing.
DR. DUKE. I don't exactly know a date certain that I can give you. I
am working with staff and the lawyers, and I will give you a call later
this afternoon to give you a much more precise date after I have
discussion with the lawyers.
MR. WAXMAN. I would appreciate that.
Dr. Fenton, certainly CDC should be able to give us some estimates
what the situation would be in those States that are in the process of
changing to a name-based area. How fast can you give us your estimates
that might be helpful? What we want is the appropriate proxy so that we
can figure out the numbers to do this in a fair way.
DR. FENTON. We will do this in as timely a manner as possible, but
we do have to follow the law on this issue.
MR. WAXMAN. I am not asking you to follow the law, I am asking
you to follow the science. That is what CDC is all about. If you can't
give us an estimate for proxies, who do we rely on, other than the
Centers for Disease Control?
Mr. Chairman, I am just very frustrated because it sounds like the
Administration sent its proposal but they haven't thought it through.
They want to work with us, but we don't know what they are proposing.
The CDC is not willing to give us their expertise. So this makes it more
difficult.
And along those lines, Dr. Duke, I guess the biggest problem is that
the Administration has proposed distributing Title II funds only on the
basis of people living outside of EMAs, and since most States that have
EMAs have a large proportion of their population inside EMAs--in
California, it is nearly 90 percent, for example. This would mean a
radical shift in funds. According to the CARE Coalition, Dr. Duke, your
proposal would mean Missouri would lose 78 percent of its Title II
funds. Does the Administration support that? The District of Columbia
would lose all of its Title II funds. Is that what the Administration
supports? New York would lose 56 percent. Is that what the
Administration supports? Illinois and Massachusetts would lose half of
their Title II funds, and of course, California would lose 62 percent of its
Title II funds. Is that what the Administration really proposes?
DR. DUKE. The proposal is to move to a new way of allocating Title
I and Title II funds, which is based on the national scientific quantitative
severity of need index, which moves away from some of the current--
MR. WAXMAN. But the consequences, from what we have seen of
the Administration's proposal, would have those kinds of cuts. Is that
the policy the Administration would support in your new formulas that
you are proposing?
DR. DUKE. The approach that we have tried to take is to reach some
kind of balance that would take into account both prevalence and
incidence of new cases that would identify the significant elements such
as poverty--
MR. WAXMAN. But if it resulted in those kinds of cuts, do you think
that would be reasonable?
DR. DUKE. I think that is the kind of discussion around the
relationship of stability, which is very important, which we talked about
earlier, stability, and at the same time, trying to move with the epidemic
and serve the needs of individuals or patients.
MR. WAXMAN. Part of the problem we have with the
Administration's proposal is to try to understand certain concepts, and I
didn't get a clear answer on what these concepts are of these core
medical services. And so it is difficult for us to determine what that
means. That has, of course, a big impact on funds. How can you justify
asking us to make such a significant change in this program without
sharing all this critical information with us? Can you provide us with
your list of grantees that are not currently spending 75 percent of their
funds on the basis of the Administration's definition of core medical
services? That's first, and what portion of their funds are spent on core
services, in your view, and how dramatic a shift in funding are you
proposing, and then lastly, has HRSA conducted in the analysis to
estimate the impact of the shift of funding that would occur if 75 percent
of all Ryan White funds are spent on core medical services?
I don't expect you to answer that now, but that is information we
ought to have before we make some of these decisions.
DR. DUKE. We will provide as much information as we possibly can
for the record.
MR. WAXMAN. And how soon would we get that information?
DR. DUKE. We will have it for you within the week.
MR. WAXMAN. Okay, thank you.
And let me ask you about Medicaid coverage, because one way to
deal with the press of funding that we have, a very sensible way would
be to allow the States to provide Medicaid coverage to persons with HIV
who are not now covered. They have to have full-blown AIDS and be
disabled. But if we allow Medicaid to provide HIV coverage, this would
take a lot of pressure off the Ryan White funds.
I wonder if you could tell me if the Administration would support
legislation to do that?
DR. DUKE. I don't have a position on that, sir.
MR. WAXMAN. Do you have a recommendation that you would
make to Secretary Leavitt to consider?
DR. DUKE. I will take that back for discussion.
MR. WAXMAN. On Medicare, we have a very strange situation
because we have many States that are on waiting lists for coverage of the
AIDS drugs under the ADAP program, and similarly, there is a concern
that not every State covers the appropriate array of drugs, so we need
more money in that area. One way to get more money is that when
people who are covered under Medicare and are age-eligible for the
Medicare drug program, they get into that donut hole, and then the
ADAP program continues to pay for their drugs, which means they never
get out of the donut hole, so the catastrophic coverage comes into effect.
That is the catch, that ADAP is paying for their drugs, and under the
Medicare rules, they never incur the necessary out-of-pocket costs to
trigger the catastrophic. That makes no sense. Shouldn't we be making
it clear that although ADAP is paying for the drugs that it should qualify
as an out-of-pocket expenditure, and would the Administration support
that change?
DR. DUKE. Sir, the interaction of different pieces of legislation is a
concern, and we will have to take it under consideration to answer that
for the record.
MR. WAXMAN. Well, you are responsible for ADAP and making the
best use of those funds. Don't you think that would be the best use of
those funds, if we counted them so that Medicare comes in and picks up
the catastrophic costs?
DR. DUKE. I will have to get a position back to you, sir.
MR. WAXMAN. Have you raised the issue with Secretary Leavitt?
DR. DUKE. There have been many discussions of interactions of
laws, sir.
MR. WAXMAN. Have you raised it with Secretary Leavitt?
DR. DUKE. We've had many discussions.
MR. WAXMAN. Now, I would like clarification--Ms. Capps asked
the question. Dr. Fenton, CDC uses statistics on actual living AIDS
cases, does it not?
DR. FENTON. That is correct.
MR. WAXMAN. And when you are looking at the epidemic, you
don't use the formula written in the Ryan White Act that only looks back
10 years. For example, you use actual living AIDS, is that right?
DR. FENTON. We provide data on a variety of indicators to our
colleagues at HRSA, including HIV reports as well as 10-year, 12-month
AIDS case reports for consideration.
MR. WAXMAN. Well, I think Ms. Capps' point was two-fold. One,
actual living AIDS is a more accurate count of persons with AIDS than
the Ryan White estimate, and two, using data on actual living AIDS
cases provides the best data for use for any proxy to estimate persons
living with HIV until the name-based system is mature. Don't you
agree?
DR. FENTON. I would like to consider that with colleagues and get
back to you for the record.
MR. WAXMAN. Well, Mr. Chairman, I appreciate your generosity in
letting me pursue these questions, but I must express my frustration. We
want to work with the Administration, but if they give us a proposal, they
ought to be able to back up the proposal. They ought to tell us what it
means, and if they can't figure that out, it makes it difficult.
And if you will let me have just one point with Ms. Crosse. This
may have been beaten to death, but I guess the question is you have been
criticized for using only Title I and Title II. Would you agree that
another valid way to understand the complete picture of funding under
the CARE Act would be to look at the distribution of funds under all the
Titles, and would you also agree that GAO's conclusions and
recommendations might have been very different had the funding across
all Titles been taken into account?
MS. CROSSE. Sir, I cannot go so far as to say that our conclusions
and recommendations would have been different absent any examination
of those other factors. I would have concerns about linking the non-
formula based distributions that rely upon competitive grants and that
could change from year to year--
MR. WAXMAN. Well, you obviously decided you didn't want to do
it that way. Could you see someone else doing it that way, since we are
talking about massive redistribution of money if we don't take those
other Titles into consideration? You may not agree with that
formulation, but don't you think that is another valid way to do it, or do
you think it is completely invalid?
MS. CROSSE. I would be concerned about including some portions
of those other fundings. Some parts of it, I think, could validly be
included.
MR. WAXMAN. Okay, thank you.
Thank you, Mr. Chairman.
MR. DEAL. Thank you. I will use my time that I didn't give myself
at the beginning, to sort of wind this whole thing up.
First of all, with regard to Ms. Crosse, the survey, and the report that
you did, do you know what percentage of overall funding in this Ryan
White program is included in Titles I and II?
MS. CROSSE. I believe it is approximately 80 percent of the funding,
or at least in the fiscal year that we examined it was about 80 percent.
MR. DEAL. So that is where the bulk of the money is going?
MS. CROSSE. That is where the bulk of the money is going, and that
is the funding that is linked to the cases.
MR. DEAL. Are the others linked to grant programs based on the
justifications of the applications that are submitted?
MS. CROSSE. That is correct.
MR. DEAL. Am I correct that those communities, cities, and States
that are eligible under Title I and II are also eligible for the grant
programs? Is that correct?
MS. CROSSE. That is correct.
MR. DEAL. So they are not discriminated against in the other Titles?
MS. CROSSE. No, those funds go to successful grant applicants,
including some local health departments, State health departments,
depending upon what funding they have applied for.
MR. DEAL. Okay. Dr. Fenton, how long have the States known that
they needed to go to a name-based reporting system? How long has that
been out there?
DR. FENTON. CDC included the shift to name-based reporting in its
1999 guidelines.
MR. DEAL. So that is quite a while that States have known it. I
mean, it is not something that is the fault of the CDC or anyone else to
say that they didn't know it. That is my judgment, based on those kind
of timelines, and most everybody has complied, is that right?
DR. FENTON. Well, currently, as I have said in my testimony, 43
States have currently shifted over to name-based reporting and we are
anticipating that more will do so by the end of the year.
MR. DEAL. Right. There have been several things talked about, and
I think we go back to the idea under Title I and Title II. How is the most
equitable way to determine who needs the services? I think that Dr.
Duke's suggestion that one of the things, even within the numbers, that
needs to be considered is the severity of need. Even though you may be
counted in the numbers, the need on a case-by-case basis varies
significantly. Is that the general gist of the severity of need criteria, Dr.
Duke?
DR. DUKE. The severity of need criteria is designed to try to
understand how we could distribute funds, you know, in a way that
would be consistent with a picture of what the epidemic looks like today.
In here, we are talking about the prevalence of the disease, the incidence
of the disease, the new cases coming in, the level of poverty, and other
factors that would help us understand on a nationwide basis how to
distribute it so that the patient, the individual patient is treated fairly
across the United States.
MR. DEAL. Of course, you know, in a simplistic world, it would
seem to me that the idea of letting us just come up with an actual count
and I guess one of the things that disturbs me, and I will spare you the
full extent of my political story. It is one that is prevalent in my State for
a long time about the fellow out on Election Day walking through the
cemetery with absentee ballots writing the names down off the
headstones. He was asked about it and he said well, they deserve to vote
just like everybody else. It bothers me that we are allowing a system that
counts deceased individuals, and as I understand it, with the EMAs, you
actually may count those individuals twice. Am I correct, Ms. Crosse?
MS. CROSSE. That is correct in one jurisdiction.
MR. DEAL. Okay. Is that San Francisco?
MS. CROSSE. Yes, sir.
MR. DEAL. Okay. So we have got things built in to what we have
done over the past that have distorted getting to the same treatment for
individuals, regardless of where they might live in this country. One of
the phrases that was used was the hold harmless communities. How
many of those are now built in to the law?
MS. CROSSE. For the EMAs, there are 29 of the 51--I am sorry. I
am not speaking to hold harmless, I am speaking to the grandfather
clause. I am sorry, I don't have that figure at my fingertips. There are, I
believe, about 15 that are held harmless under Title I. Only two of those
receive significant funding, the remainder receive very, very minimal
funding under the hold harmless provision.
MR. DEAL. So we have got the hold harmless, which really distorts
the counting individuals. We have got the grandfather clause, which also
distorts the way you count individuals. Is the name-based reporting
system, Dr. Fenton, designed to eliminate some of those inconsistencies
in the way we count who is eligible for assistance, or does it have
another purpose?
DR. FENTON. Well, name-based reporting really is the gold standard
of reporting, and all of infectious diseases in the United States are
reported using this mechanism. The beauty of the name-based reporting
is that it enables States to de-duplicate their numbers much more
effectively. It is also a much more cost-effective system, and it is a much
more cost-efficient system as well. So the key benefit is the ability to de-
duplicate at the State level, and also to de-duplicate between States as
well.
MR. DEAL. All right. Well, I have exhausted my time, too.
This has been a very good panel. As I said at the outset, we will
expect to have a roundtable discussion from others who are in the
community of providers and those who may be affected by the disease,
and we will try to have that in the very near future so that the concerns
that Mr. Pallone has addressed will be able to be heard by the committee
at that time.
I would also add that any questions that committee members would
like to submit may be allowed to be submitted to you in writing, and I
think you have heard some today that probably will ask for follow-up on
that.
Thank you all for your attendance today, and with that, the hearing
adjourned.
[Whereupon, at 11:35 a.m., the subcommittee was adjourned.]
RESPONSE FOR THE RECORD BY DR. ELIZABETH DUKE, ADMINISTRATOR, HEALTH
RESOURCES AND SERVICES ADMINISTRATION, U.S. DEPARTMENT OF HEALTH AND HUMAN
SERVICES
Rep. Bobby Rush (D-IL)
1. Do you support the recommendation that reauthorization legislation
specify the amount of funding that should be dedicated to core medical
services, and if so, what rationale do you use to justify the percentage of
funding - 75 percent - that you recommend?
Under current law, providers funded under the Ryan White CARE Act may offer
a broad range of services to their patient, but only some can be considered
life-saving and life-extending. In addition, the services offered to CARE
Act clients vary across geographic regions. The proposed change is intended
to foster health among HIV infected individuals and uniformity of services
across the country by designating a basic set of core health care services
for all CARE Act clients. The components of core services would, at a
minimum, include health care services and medications for which 71% of
CARE Act funding was directed in 2004. An additional 9% of CARE Act
funding in 2004 supported case management services, a health-related service
key in helping persons gain and maintain access to treatment. Thus the 75%
minimum is in line with program expectations and supported by program data. Both Title I and Title II program guidance describe the elements of a
continuum of care and utilize the term "core services." In the 2005 Title I
guidance, grantees were asked to prioritize essential core services, describe
the priority setting and allocations processes, and how data was used in this
process to increase access to core services. The guidance also asks grantees
to justify other sources of core services if funds are not allocated to these
services. For the top services, including core services, grantees are asked
to develop one or more service goals for each priority with time-limited and
measurable program objectives.
2. What services do you believe constitute "core medical services" and what
is your rationale?
Various groups have developed lists of "core medical services" for people
living with HIV and AIDS. In particular, the Institute of Medicine (IOM)
study, "Public Financing and Delivery of HIV/AIDS Care," published in 2004,
defined eight broad areas that capture the critical components of HIV care
as listed below.
Outpatient primary care medical services
Medications, including highly active antiretroviral therapy (HAART)
Other drug therapies
Laboratory and radiological services
Oral health care
Obstetrics and reproductive health services of HIV-infected women
Outpatient mental health and substance abuse services
Home health and hospice care
Medical case management
HIV prevention services
We will continue to work with Congress during the reauthorization process
to evaluate what services should be included.
3. In its 2004 recommendations to Congress on maximizing Federal funding for
HIV/AIDS care, the Institute of Medicine (IOM) defined core medical services
as including primary care services, medications, mental health and substance
abuse treatments (in-patient and out-patient), case management, prevention
education, and obstetric/reproductive health services.
Please comment on this recommendation and your rationale if you propose a
different mix of "core medical services"?
The Administration is still working closely with Congress on the final
definition of "core medical services," and recommendations from the IOM
study that defined a list of eight broad areas as "core medical services"
have been incorporated into the discussions.
4. The President's principles also call for the development of a "severity
of need index." Why would Congress create disincentives for State and
municipal governments to invest in Medicaid, the AIDS Drug Assistance
Program (ADAP), and prevention, especially at a time when Federal dollars
are not keeping pace with the epidemic?
Please comment on the "severity of need index" idea and your specific
recommendations to leverage more State, municipal, and private investment in
AIDS-related services?
The President's Principles call for more equitable distribution of CARE Act
funds. Important provisions in the law, such as maintenance of effort and
the matching fund requirement, will continue to safeguard against the
diversion or reduction of State and local funds away from critical HIV/AIDS
services. A severity of need index, as proposed in the President's
reauthorization principles, calls for the establishment of objective
indicators in determining severity of need for funding core medical services
and proposes that such an index take into account HIV incidence, level of
poverty, availability of resources including local, State and Federal
programs and support, and private resources. Such index will allow for
better targeting of CARE Act dollars while assuring that State, municipal,
and other investments in HIV/AIDS related services continue to support
Federal efforts in HIV care and treatment.
5. Title IV of the CARE Act provides an important link to care, services and
research for women, children, youth and families affected by HIV/AIDS and
have led the way in reducing mother-to-child transmission from more than
2,000 babies born HIV-positive each year to fewer than 200. Title IV
programs bring HIV-infected pregnant women into care and help them adhere
to their treatment regimens for the duration of their pregnancy and delivery.
Following delivery, Title IV nurses and case managers follow up to ensure
the mother is administering the required six-week treatment regimen to the
newborn.
Given these successes, performed each and every day by Title IV projects
across the country, do you agree that the Title IV model of care should be
continued, strengthened and expanded in reauthorization?
We continue to work with Congress during the reauthorization process to
ascertain the appropriate services and activities under Title IV of the CARE
Act.
6. I have concerns that Title IV would be severely damaged if funds were
set aside for "core medical services," which are articulated in the
President's principles as "basic, primary care and medication needs." Title
IV is successful because it offers a broad range of family-centered services
that are essential to getting mothers to take care of their own health, to
keep children in care, to give mom the support she needs - like child care
and transportation - to get her kids and herself to doctor appointments and
the pharmacy, and to reaching out to HIV-infected youth and keeping them in
care.
My question is what changes would the Administration like to see made to
Title IV? Specifically, do you want Congress to apply a set-aside of Title
IV funds for "core, medical services"?
Although the Title IV program of the CARE Act is structured differently than
the other Titles, in essence the main goal is to assure that its clients
receive core medical services, including primary medical care and medications.
Because there is no final definition of core medical services as yet, it is
difficult to predict which, if any, of the Title IV-funded services may face
a possible reduction in funding. It is anticipated that many CARE Act
programs may have to make modifications to their programs based on the
application of the requirement to spend 75% of their funds on "core medical
services". However, the change is intended to assure quality health care
for HIV-infected individuals and uniformity of services for CARE Act clients
across the country.
7. Given the rise in HIV and AIDS infections in African American women, we
need to look at ways to reach this population more effectively. The
President spoke about this in his State of the Union Address, yet the
Administration's principles were virtually silent on the fact that 88% of
people serviced by Title IV are people of color.
What plans does HRSA have for making sure that the Title IV family-centered
care model, which has been a lifeline for women of color and their families
since 1988, is able to serve more families of color?
The Title IV program will continue to reach out to communities of color
through its programs, as well as through the use of the Minority AIDS
Initiative funding, to identify, enroll in services and retain in services
women of color and their families. The program has utilized many unique
approaches to outreach in these communities, including through faith-based
and community-based non-clinical programs that provide HIV prevention and
education services and make referrals for counseling and testing. Utilizing
these approaches reaches people in settings that are non-threatening and
conducive to open and honest exchange of information about issues such as
HIV.
8. My city and State have and will continue to contribute to the care of
our residents living with HIV/AIDS. We are also committed to ensuring that
every American living with this disease has adequate health care and
understand the need for a more equitable funding distribution. Yet, in the
absence of new funding to adequately address the epidemic in all areas, the
Administration has proposed changes to funding formulas that would shift
funding from needy individuals in urban areas to needy individuals in rural
areas.
Shifting funding from hard hit urban areas like Chicago where more than 80
percent of those living with HIV/AIDS reside would not address existing
disparities across the country, but would instead do double harm: it would
destabilize the existing health care networks in large cities, and it would
put funding for health care where no health infrastructure exists to deliver
these services.
How does the Administration propose to address these concerns?
The President's principles call for more equitable distribution of CARE Act
funds, which is paramount in the reauthorization. Proposed changes in the
CARE Act are not intended to destabilize services, but are designed to assure
that persons in need of HIV services and unable to pay for them will be able
to receive those services. By maintaining important provisions in current
law, such as maintenance of effort and matching fund requirements, the
Administration will ensure that states continue to contribute state and
local funds to critical HIV/AIDS services.
RESPONSE FOR THE RECORD BY DR. KEVIN FENTON, DIRECTOR, CENTERS FOR DISEASE
CONTROL AND PREVENTION, U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES
Question for the Record from Representative Rush.
1. In January of this year, the Illinois Department of Public Health began
to implement the transition from code-based to name-based HIV surveillance
data. Even with this change, our State may lose millions of CARE Act dollars
because its name-based database will not be as complete as other states when
funding distributions area made.
Will CDC support provisions in the CARE Act reauthorization to allow
code-to-name based states to phase in their name based reporting programs
without funding penalties?
CDC will implement the provisions contained in the law as enacted for the
reauthorization of the Ryan White CARE Act. CDC is committed to assisting
states to move from code-based to name-based surveillance systems as quickly
as possible.