[House Hearing, 106 Congress]
[From the U.S. Government Publishing Office]






               THE RYAN WHITE CARE ACT AMENDMENTS OF 2000

=======================================================================

                                HEARING

                               before the

                            SUBCOMMITTEE ON
                         HEALTH AND ENVIRONMENT

                                 of the

                         COMMITTEE ON COMMERCE
                        HOUSE OF REPRESENTATIVES

                       ONE HUNDRED SIXTH CONGRESS

                             SECOND SESSION

                                   on

                               H.R. 4807

                               __________

                             JULY 11, 2000

                               __________

                           Serial No. 106-140

                               __________

            Printed for the use of the Committee on Commerce


                    U.S. GOVERNMENT PRINTING OFFICE
65-914CC                    WASHINGTON : 2000




                         COMMITTEE ON COMMERCE

                     TOM BLILEY, Virginia, Chairman
W.J. ``BILLY'' TAUZIN, Louisiana     JOHN D. DINGELL, Michigan
MICHAEL G. OXLEY, Ohio               HENRY A. WAXMAN, California
MICHAEL BILIRAKIS, Florida           EDWARD J. MARKEY, Massachusetts
JOE BARTON, Texas                    RALPH M. HALL, Texas
FRED UPTON, Michigan                 RICK BOUCHER, Virginia
CLIFF STEARNS, Florida               EDOLPHUS TOWNS, New York
PAUL E. GILLMOR, Ohio                FRANK PALLONE, Jr., New Jersey
  Vice Chairman                      SHERROD BROWN, Ohio
JAMES C. GREENWOOD, Pennsylvania     BART GORDON, Tennessee
CHRISTOPHER COX, California          PETER DEUTSCH, Florida
NATHAN DEAL, Georgia                 BOBBY L. RUSH, Illinois
STEVE LARGENT, Oklahoma              ANNA G. ESHOO, California
RICHARD BURR, North Carolina         RON KLINK, Pennsylvania
BRIAN P. BILBRAY, California         BART STUPAK, Michigan
ED WHITFIELD, Kentucky               ELIOT L. ENGEL, New York
GREG GANSKE, Iowa                    TOM SAWYER, Ohio
CHARLIE NORWOOD, Georgia             ALBERT R. WYNN, Maryland
TOM A. COBURN, Oklahoma              GENE GREEN, Texas
RICK LAZIO, New York                 KAREN McCARTHY, Missouri
BARBARA CUBIN, Wyoming               TED STRICKLAND, Ohio
JAMES E. ROGAN, California           DIANA DeGETTE, Colorado
JOHN SHIMKUS, Illinois               THOMAS M. BARRETT, Wisconsin
HEATHER WILSON, New Mexico           BILL LUTHER, Minnesota
JOHN B. SHADEGG, Arizona             LOIS CAPPS, California
CHARLES W. ``CHIP'' PICKERING, 
    Mississippi
VITO FOSSELLA, New York
ROY BLUNT, Missouri
ED BRYANT, Tennessee
ROBERT L. EHRLICH, Jr., Maryland
                   James E. Derderian, Chief of Staff
                   James D. Barnette, General Counsel
      Reid P.F. Stuntz, Minority Staff Director and Chief Counsel
                                 ------                                

                 Subcommittee on Health and Environment

                  MICHAEL BILIRAKIS, Florida, Chairman
FRED UPTON, Michigan                 SHERROD BROWN, Ohio
CLIFF STEARNS, Florida               HENRY A. WAXMAN, California
JAMES C. GREENWOOD, Pennsylvania     FRANK PALLONE, Jr., New Jersey
NATHAN DEAL, Georgia                 PETER DEUTSCH, Florida
RICHARD BURR, North Carolina         BART STUPAK, Michigan
BRIAN P. BILBRAY, California         GENE GREEN, Texas
ED WHITFIELD, Kentucky               TED STRICKLAND, Ohio
GREG GANSKE, Iowa                    DIANA DeGETTE, Colorado
CHARLIE NORWOOD, Georgia             THOMAS M. BARRETT, Wisconsin
TOM A. COBURN, Oklahoma              LOIS CAPPS, California
  Vice Chairman                      RALPH M. HALL, Texas
RICK LAZIO, New York                 EDOLPHUS TOWNS, New York
BARBARA CUBIN, Wyoming               ANNA G. ESHOO, California
JOHN B. SHADEGG, Arizona             JOHN D. DINGELL, Michigan,
CHARLES W. ``CHIP'' PICKERING,         (Ex Officio)
    Mississippi
ED BRYANT, Tennessee
TOM BLILEY, Virginia,
  (Ex Officio)

                                  (ii)





                            C O N T E N T S

                               __________
                                                                   Page

Testimony of:
    Birkhead, Guthrie S., Director, AIDS Institute, New York 
      State Department of Health.................................    74
    Colon, Jose F., Coordinator, Pacientes de SIDA pro Politica 
      Sana.......................................................    89
    Davy, Joseph, Policy Advocate, Columbus AIDS Task Force......    80
    Fox, Claude Earl, Administrator, Health Resources and 
      Services Administration, accompanied by Joseph O'Neill, 
      Associate Administrator, Bureau Of HIV/AIDS, Health 
      Resources and Services Administration......................    17
    Heinrich, Janet, Associate Director, accompanied by Jerry 
      Fastrup, Assistant Director, U.S. General Accounting Office    56
    Jackson, Eugene, Deputy Executive Director for Policy, 
      National Association of People with AIDS...................    94
    Liberti, Thomas M., Chief, Bureau of HIV/AIDS, Florida 
      Department of Health.......................................    69
    Mann, Dorothy, Board Member, AIDS Alliance for Children, 
      Youth & Families...........................................    84
    White, Jeanne, National Spokesperson, AIDS Action............    64
Material submitted for the record by:
    Henry, Charles S., Director, Los Angeles County Office of 
      AIDS Programs and Policy, prepared statement of............   109
    Herman, Amy, President, New York AIDS Coalition, letter dated 
      July 10, 2000, enclosing material for the record...........   115
    Smith, W. Shepherd, President, Americans for a Sound AIDS/HIV 
      Policy, prepared statement of..............................   112

                                 (iii)

  

 
               THE RYAN WHITE CARE ACT AMENDMENTS OF 2000

                              ----------                              


                         TUESDAY, JULY 11, 2000

                  House of Representatives,
                             Committee on Commerce,
                    Subcommittee on Health and Environment,
                                                    Washington, DC.
    The committee met, pursuant to notice, at 10:07 a.m. in 
room 2123, Rayburn House Office Building, Hon. Michael 
Bilirakis (chairman) presiding.
    Members present: Representatives Bilirakis, Deal, Burr, 
Coburn, Cubin, Bryant, Brown, Waxman, Green, Strickland, 
DeGette, Barrett, Capps, Towns, and Eshoo.
    Staff present: Marc Wheat, majority counsel; Brent 
DelMonte, majority counsel; Kristi Gillis, legislative clerk; 
and John Ford, minority counsel.
    Mr. Bilirakis. Good morning. This hearing will come to 
order.
    This morning the subcommittee is holding a hearing on H.R. 
4807, the Ryan White CARE Act Amendments of 2000. This 
bipartisan legislation was introduced by two members of this 
subcommittee, Congressman Tom Coburn and Congressman Henry 
Waxman.
    I really want to take this opportunity to sincerely commend 
them both for their hard work on this important issue. Henry is 
not here at this moment, but I have extended that to him, 
previously.
    I was pleased to be an original co-sponsor of the bill, 
which demonstrates what can be accomplished when parties and 
differences are set aside.
    The Ryan White Emergency Comprehensive Aides Resources 
Emergency, CARE, Act was enacted in 1990. During the 104th 
Congress, this subcommittee approved bipartisan legislation to 
reauthorize the act.
    The Ryan White CARE Act provides critical funding for 
health and social services to the estimated 1 million Americans 
living with HIV and AIDS. The Reauthorization Bill before us 
will ensure that these patients continue to receive the care 
and medications they need to enhance and prolong their lives.
    H.R. 4807 recognizes that women and minorities increasingly 
comprise a larger percentage of new cases of HIV in the United 
States. This demographic shift has not been addressed under 
existing law, since funds are currently targeted toward areas 
with high numbers of AIDS patients.
    The current formula does not accurately reflect the number 
of individuals who are infected with HIV, but have not 
contracted AIDS. As a result, Federal resources are not going 
to the areas hardest hit by the disease today.
    H.R. 4807 will begin to shift funding toward communities 
with a large population of HIV positive individuals. By 
targeting resources to the front line of the epidemic, we will 
be able to reduce transmission rates, and ensure the necessary 
infrastructure is in place to provide care to HIV positive 
individuals as soon as possible. This change will allow the 
Federal Government to be proactive instead of reactive in the 
fight against HIV and AIDS.
    This shift will only occur, however, when reliable data on 
HIV prevalence is available. The bill will also include a hold 
harmless provision to ensure that no metropolitan area will 
suffer a drastic reduction in CARE Act funds.
    H.R. 4807 also increases the focus on prevention. States 
with effective partner notification and HIV surveillance 
programs will be eligible for additional Federal funds. Partner 
notification programs have been proven particularly effective 
in finding individuals from traditionally under-served 
communities, and getting them into care.
    This emphasis on prevention services is part of our 
comprehensive effort under the legislation to eliminate 
barriers for access to care.
    I would like to thank all of our witnesses for taking the 
time to join us. I am sure that their knowledge and insight 
will prove valuable as we discuss this important legislation.
    It is always a pleasure to welcome a Floridian before the 
subcommittee. Today, we will hear from Mr. Thomas Liberti, 
Chief of the Bureau of HIV/AIDS for the Florida Department of 
Health.
    Florida's population is racially and ethnically diverse. 
This diversity has complicated effective disease prevention 
efforts. As Mr. Liberti will explain, minority populations in 
Florida have been disproportionately affected by HIV and AIDS.
    I look forward, as I know we all do, to learning more about 
the State's efforts to address this serious problem, and how 
the Federal Government can help.
    I am also particularly pleased to welcome, on behalf of all 
of us, Jeanne White, today. Since her son, Ryan's, tragic death 
over 10 years ago, she has served as an eloquent spokesperson 
and tireless crusader for individuals stricken with HIV and 
AIDS. With your help, Jeanne, we can pass legislation that 
would make Ryan proud.
    The Chair now yields to Mr. Brown, the Ranking Member.
    Mr. Brown. Thank you, Mr. Chairman. I would like to thank 
Administrator Fox and our other distinguished witnesses, 
including Joe Davy, from the Columbus, Ohio, AIDS Task Force, 
and Jeanne White. Thank you for joining us, today.
    I would like to commend Mr. Coburn and Mr. Waxman, as well 
as their staff members, Roland Foster and Paul Kim, for their 
exceptional work on the Ryan White CARE Act Amendments of 2000.
    The Ryan White CARE Act has been and continues to be the 
Nation's most effective weapon against HIV/AIDS. The U.S. has 
been well served by the act in two critical areas: one, it 
combats the illness, itself; and second, it combats the fear of 
prejudice and alienation that HIV/AIDS has engendered in this 
country.
    The act was created in the memory of Ryan White, the young 
Kokomo, Indiana teenager, who became a hero in the fight 
against HIV/AIDS. All he wanted was something most kids take 
for granted; the right to attend school. Ryan was a 
hemophiliac, and contracted HIV through a bad blood 
transfusion. His goal was to change the misconceptions 
surrounding AIDS.
    While fighting to get his education, he in fact served as 
an educator for the millions of Americans who tried to stand in 
his way. Ryan died at age 18, in April 1990.
    Now, 10 years later, it is clear the Ryan White CARE Act 
has made a tremendous difference in the lives of people living 
with HIV/AIDS. I know that because much of the Congressional 
District I represent in Northeast Ohio is included in Ohio's 
only Title I eligible metropolitan area.
    Title I funds have provided health care and support 
services, and medications that have literally brought people 
back to life. Whether they live in the more rural areas of my 
district, like Medina County, or in the more urban O'Leary or 
Lorraine, the Ryan White CARE Act is there to help with medical 
care, dental services, medications, alcohol and drug treatment, 
mental health services, and nutrition.
    It is appropriate for the House Health and Environment 
Subcommittee to be considering the reauthorization of the Ryan 
White CARE Act at the same time that thousands of miles away, 
scientists, activities, and people living with HIV/AIDS are 
meeting in Durban, South Africa, as part of the Thirteenth 
International AIDS Conference.
    AIDS is set to kill more people worldwide than World War I, 
World War II, the Korean War, and Vietnam War, combined. Those 
individuals committed to fighting AIDS on a global scale face 
the same kinds of obstacles Ryan White faced two decades ago: 
ignorance, fear, apathy, and the urgent need for more 
resources.
    Ryan White was on this earth only for 18 years, but in that 
time, he taught Americans that we need to fight AIDS; not fear 
it, not ignore it, not use it to perpetuate harmful prejudices. 
His lessons live on in the Ryan White CARE Act. Let us keep his 
lessons alive and reauthorize this bill.
    Thank you, Mr. Chairman.
    Mr. Bilirakis. And I thank the gentleman for his eloquent 
statement.
    I now yield to the gentleman, the co-writer, if you will, 
of the legislation, Dr. Coburn.
    Mr. Coburn. Thank you, Mr. Chairman. I appreciate you 
having this hearing today.
    I want to take this time to thank Mr. Waxman and Paul Kim 
and Karen Nelson of their staff. Our staffs worked hard to make 
sure that we came up with a bill that addresses the needs that 
are out there. Over the past year, we have worked with almost 
every interest group in this area, as has Mr. Waxman, to try to 
address the needs.
    Besides reauthorizing the important parts of this act, we 
are changing direction in the House-passed bill for a very 
important reason. Those with HIV are too often not figured in, 
in the components for care. No. 2, this is a disease that is 
preventable. It is preventable. It need not go further. The act 
will be changed to emphasize prevention, as it should be.
    The best and most efficient use of our dollars in this 
country for treating HIV/AIDS is to prevent the next person 
from getting it. So the act will have an emphasis on 
prevention.
    It also will change the manner in which we fund HIV 
treatment, by including those infected with HIV in the 
calculations for grants.
    We all know that tremendous strides have been made in 
preventing the progress from HIV infection to full-blown AIDS. 
We have 300,000 to 400,000 people in this country who have HIV 
today, and know it, and do not have AIDS. We have another 
300,000 to 400,000 people in this country that have HIV, that 
do not know it.
    That is a tremendous number of people that we need to be 
helping; let alone the other 10 million people that are 
exposed, at this time in this country, through behaviors that 
put them at risk for this. So the emphasis has been moved from 
where the epidemic is, which is in HIV inflection, and not 
necessarily full-blown AIDS.
    So we do not drop any of our attention to AIDS, but we 
increase our attention and directed purpose toward those with 
HIV, and preventing the next person from getting it.
    The other thing that is addressed in this is our battle 
against perinatal HIV infection. As most of you know, great 
strides have been made. We have been very successful in 
lessening perinatal transmission.
    But we have not gone far enough. As New York State's 
experience shows, we can do much better in the country. It is 
the position of the American Medical Association that perinatal 
testing ought to take place; that newborn testing ought to take 
place, if the status of the mother is unknown.
    We now know that with that information, we can eliminate a 
large portion of HIV infection in neonates, and we ought to be 
about doing that.
    Then finally, this bill addresses those that have not been 
served appropriately; especially minorities, especially women, 
especially rural areas, that have not had access to equal 
treatment.
    HIV does not care who you are. It does not care where you 
live. It does not care about your sexual orientation, and 
neither should we. We should make sure that everybody who has 
this disease has full and equal access to treatment. I feel 
confident that we are going to accomplish that with this bill.
    Then, finally, this bill assures accountability of Federal 
dollars. As we have seen from the GAO audit, there are some 
significant problems with the large amounts of money that have 
been misspent or misused in this fight.
    When people in Oklahoma can not get ADAT money, and yet 
people are stealing millions of dollars from Ryan White funds, 
I think that the Congress has to address that. I believe that 
we have, effectively, in this bill.
    With that, I yield back to the chairman, in the hope that 
we can move to a fast markup on this, and to the full 
committee.
    Mr. Bilirakis. I thank the gentleman.
    Ms. Eshoo, for an opening statement.
    Ms. Eshoo. Thank you, Mr. Chairman, for having this 
hearing, and good morning to you, and to the witnesses that 
have joined us today. I want to recognize and thank Congressmen 
Waxman and Coburn for their work on the bill, as well as the 
work of their staffs.
    The Ryan White programs are vitally important to people 
living with HIV and AIDS. Reauthorization will ensure that 
lifesaving and life enhancing medical and social services will 
continue to be available to people fighting this disease.
    Reliability and stability are really the goals of the 
legislation, yet there is an important section of the bill that 
runs contradictory to these principles, the hold harmless 
provision.
    Under existing law, an eligible metropolitan area, known as 
EMAs, receiving Title I funds, can lose no more than 5 percent 
of its funding over a 5-year period. This hold harmless 
provision was specifically designed to prevent the rapid de-
stabilization of existing systems of care, when changes in the 
Title I formula were adopted by Congress in 1996.
    H.R. 4807 changes this dramatically, allowing an EMA to 
lose 25 percent of its funding, over the same time period. The 
result will be a rapid decline among systems of care, and 
reduced access to critical AIDS services.
    The negative impact will be disproportionately felt in the 
Bay area. My Congressional District is part of the Bay area. 
The Bay area continues to be among the hardest hit by the HIV 
epidemic, and our epidemic is growing.
    According to the CDC, San Francisco has the third highest 
number of AIDS cases among metropolitan areas. Last week, the 
San Francisco Department of Public Health reported that the new 
HIV infections in the Bay area nearly doubled in 1999.
    These statistics reinforce what we have known since the 
CARE Act was enacted in 1990. Bay area communities have an 
unusually high number of AIDS cases, relative to their 
populations. Yet, the current formula does not account for this 
increased public health burden.
    While the original CARE Act based part of the Title I 
formula grant on the rate of AIDS cases per 100,000 people, the 
density factor was removed when the act was reauthorized in 
1996. Knowing the potentially devastating impact that removal 
of the density factor could have on San Francisco and other 
cities with a large number of AIDS cases, relative to the 
overall population, Congress included the 5 percent hold 
harmless specifically to minimize the negative impact of this 
change.
    The current funding formula also fails to reflect those 
living with HIV. In the Bay area, there are a significant 
number of people with HIV, who have not progressed to an AIDS 
diagnosis in part, due to their ability to access CARE Act 
services. As a result, San Francisco and other EMAs are 
penalized for keeping people healthy under the existing 
formula.
    We still do not recognize density or living HIV cases in 
the Title I formula; two factors which have resulted in 
significant funding cuts for the Bay area. Yet, H.R. 4807 takes 
away the safety net. A 25 percent hold harmless is effectively 
a harm clause now.
    I think that the Senate has it right. By doubling the hold 
harmless reduction to 10 percent, they have continued an 
aggressive phase-out of the hold harmless, without pulling the 
rug out from under any given EMA.
    I look forward to working with the bill's sponsors, both in 
the House and the Senate, to fashion a responsible hold 
harmless provision that will not leave the Bay area without its 
safety net.
    Mr. Chairman, I would like unanimous consent to submit for 
the record an article that appeared in the San Francisco 
Chronicle on Friday, June 30, that is entitled, ``San Francisco 
HIV Rate Surges; Alarming Incidence of New Infections Raise 
Fears of Scourge to Come.''
    Mr. Bilirakis. Without objection, that will be the case.
    [The information referred to follows:]

            [Friday, June 30, 2000--San Francisco Chronicle]

                          S.F. HIV Rate Surges
  alarming incidence of new infections raises fears of scourge to come
                 Sabin Russell, Chronicle Staff Writer
    San Francisco--San Francisco's long-feared and often predicted new 
wave of infection is here.
    After years of stability--wrought by strong prevention programs, a 
safer-sex ethic and powerful drugs--city health experts now estimate 
that the number of new infections by the virus that causes AIDS nearly 
doubled, to 900, in the past year.
    ``This is a harbinger of what is going to happen all over the 
country,'' warned Tom Coates, director of the University of California 
at San Francisco AIDS Research Institute. ``What happens in the HIV 
epidemic usually happens here first.''
    The estimate is based on a dozen indicators monitored by city 
health authorities. The newest and most worrisome data come from a 
string of city clinics that perform anonymous HIV testing. The centers 
serve a higher-risk clientele than in the general population, so they 
serve as an early warning system.

                        EPIDEMIOLOGISTS WORRIED
    From 1997 to 1999, the percentage of HIV positive cases turning up 
at these centers nearly tripled, to 3.7 percent from 1.3 percent. The 
numbers may seem small, but they are frightening to epidemiologists, 
who note that infection rates can grow like money with compound 
interest.
    ``We are very concerned, and we are very worried,'' said San 
Francisco Department of Public Health epidemiologist Dr. Willi 
McFarland. ``These are sub-Saharan African levels of transmission.''
    The city epidemiologist has spent time in Zimbabwe researching 
AIDS. One study in that country found a 2.5 percent annual infection 
rate among factory workers. In Zimbabwe today, UNAIDS estimates that 1 
in 4 adults is HIV positive.
    As world attention shifts to the catastrophic spread of AIDS in 
Africa, troubling signs of a rekindled epidemic are turning up in this 
American gay mecca, where it all seemed to have started nearly 20 years 
ago.
    During the early 1980s, as many as half of the city's homosexual 
men were infected with the AIDS virus. Since 1981, more than 18,000 San 
Francisco residents have died of AIDS.
    ``The rise that we see at the anonymous test sites is only one 
piece of the picture,'' said McFarland. ``We have 11 different 
indicators, and they are all pointing in the wrong direction.''
    Among the troubling trends:

--Rates of rectal gonorrhea, while far below levels in the 1980s, grew 
        from 20 per 100,000 in 1994 to 45 per 100,000 in 1999.
--The proportion of gay men reporting that they always use a condom 
        fell from 70 percent in 1994 to 54 percent in 1999.
--The proportion of gay men having unprotected anal sex with more than 
        one partner grew from 23 percent in 1994 to 43 percent in 1999.
    San Francisco Department of Public Health director Dr. Mitchell 
Katz said that McFarland's data are the first in the country to link 
increased incidence of HIV infection to the well-recognized warning 
signals that had been tracked for the past five years.

                        LATEST TESTING EQUIPMENT
    ``Until this report, there were no data to say there are more 
infections,'' he said. ``This is the first report of its kind in the 
country.''
    The data have additional scientific credibility because they are 
based on the use of new testing technology that allows scientists to 
separate new HIV infections from well-established ones. Using stored 
samples, the study found a 2 percent infection rate at clinics in 1996; 
a low of 1.3 percent in 1997, then the disturbing increase: 2.6 percent 
in 1998, 3.7 percent in 1999.
    The reasons for the shift are many and complex. One factor is that 
with the use of powerful antiviral drugs that have slashed death rates, 
there are simply more people in San Francisco living with AIDS. ``The 
citywide pool of potential infection is wider than it has ever been,'' 
said McFarland.

                    PATIENTS TAKE ``DRUG HOLIDAYS''
    Another factor may be the weariness some AIDS patients have with 
the lifelong regime of taking the drugs, which are unpleasant, 
inconvenient and toxic. Patients are taking ``drug holidays'' by 
choice, as part of clinical trials and by necessity. But when the drugs 
are not taken, evidence shows that the virus comes back, and with that, 
presumably, a greater ability to infect someone else.
    Data also clearly show that the safer-sex ethic--condom use and a 
switch to oral instead of anal sex in the gay community--has been 
losing favor. Widely credited with halting the spread of HIV in San 
Francisco in the mid-1980s, safer sex practices are mocked by a 
skeptical younger generation and are openly flouted in the condom-free 
practice known as ``barebacking.''
    ``There is a responsibility issue here,'' said UC San Francisco's 
Coates, a gay man living with HIV. ``The solution needs to come from 
within the community, and especially from within the community of HIV-
infected people. It is up to us, the HIV-infected, to take charge of 
this issue as we have taken charge of our disease, and let the 
infection stop with us.''

                           LETTING DOWN GUARD
    AIDS prevention educators said the changing portrait of the 
epidemic has caused many gay men to let down their guard. ``We don't 
have the visual reminders of what it can be like to have HIV,'' said 
Steven Gibson, program director for the Stop AIDS project. ``We don't 
see the wasting syndrome. When was the last time you saw someone with 
KS lesions in the Castro?'' Kaposi's sarcoma lesions were among the 
first opportunistic infections seen in gay men during the early years 
of the epidemic.
    City AIDS surveillance experts recently convened a meeting to sift 
through the various reports from monitoring stations. Because 
California does not report the names of those who test positive for 
HIV--a step public health experts here fear would steer people away 
from testing and treatment--the city relies on a system of 
``consensus'' forecasts to determine the HIV infection rate.
    Throughout the 1990s, that rate is believed to have held steady at 
about 500 new infections a year. The estimate for 2000 has been revised 
upward to between 800 and 900, 575 of them gay men.
    The worst year for new infections was 1982, when an estimated 6,000 
were infected before the disease had a known cause. By 1984, San 
Francisco's gay community achieved an astonishing change in sexual 
behavior, and the infection rate was cut to 1,000 a year.
    Given the drumbeat of studies suggesting that the prevention 
messages of the past are losing their power, experts said the discovery 
of a resurgence in infections is more sad than surprising.
    ``We may have squandered an opportunity to extinguish this 
epidemic,'' said McFarland.

    Mr. Bilirakis. I might add, at this point, that the opening 
statements of all members of the subcommittee will be made a 
part of the record.
    Ms. Eshoo. Thank you, Mr. Chairman.
    Mr. Bilirakis. I thank the gentlelady.
    Mr. Waxman, the other co-writer of the bill.
    Mr. Waxman. Thank you very much, Mr. Chairman.
    I am pleased that the subcommittee is moving quickly in its 
consideration of the Coburn/Waxman Bill, H.R. 4807, the Ryan 
White CARE Act Amendments of 2000. I want to thank you, Mr. 
Chairman, and Mr. Coburn, and our staffs: Roland Foster for Mr. 
Coburn, and Mr. Kim, on our side, and all the community 
organizations that participated in developing this legislation.
    People with HIV/AIDS depend on Ryan White programs to stay 
healthy and to stay alive. Those programs must be reauthorized 
and should be refined to better combat the epidemic. That is 
why this legislation is so important, and why it must be 
enacted into law.
    As the original author of the Ryan White Act, I know that 
bridging our differences is the only way we can defeat the AIDS 
epidemic. The legislation reflects many compromises. It is not 
perfect. It is not how either Dr. Coburn or I would have 
written it, left to our own devices. We both made significant 
concessions on issues of great importance.
    But we cooperated out of our common commitment to fighting 
the epidemic and to reauthorizing Ryan White this year. Today, 
I am pleased that our bipartisan consensus bill promises a 
stronger, more decisive response to the epidemic than is 
possible today.
    We will hear from witnesses about the terrible threat HIV/
AIDS poses to our communities of color, to women, and to 
adolescents. We will hear that the epidemic is reaching into 
every community and every State in America.
    Our bill responds to these changes in the epidemic. 
Services and care will be focused more than ever on reaching 
HIV positive individuals who are not in care, eliminating 
disparities in services, and access in helping historically 
under-served communities.
    The legislation also begins to shift Ryan White funding and 
services toward the HIV infected population, not just 
individuals with AIDS. This is an important transition, and it 
will occur when reliable data on HIV prevalence is available.
    The legislation makes other important reforms. It 
authorizes new funding. It enhances program quality and 
accountability. It calls for greater coordination of HIV care 
and HIV prevention efforts.
    These are the reasons that most of the members of the 
committee are co-sponsors. It is the reason that I hope this 
support will lead to the speedy consideration of the bill and 
make passage this year possible. The Senate has already passed 
its bill by unanimous consent. So now it is up to us.
    We cannot delay passage of this legislation. Today, as we 
speak, the world's experts are meeting the Durban, South 
Africa, to find new ways to fight an epidemic which has killed 
18 million people, orphaned millions of children, and 
devastated entire countries.
    The virus never rests, and nor should we, until this 
legislation is enacted into law, and this terrible disease is 
eradicated from the face of the earth.
    Thank you, Mr. Chairman.
    Mr. Bilirakis. I thank the gentleman.
    I recognize Ms. Cubin, for an opening statement.
    Ms. Cubin. Thank you, Mr. Chairman.
    Over the course of the last 10 years, we have seen the face 
of HIV and AIDS change dramatically, both in terms of its 
ability to resist our drug fighting measures and our ability to 
sustain human life.
    In a relatively short period of time, we have managed to 
make great strides in the fight against AIDS; progress that 
perhaps was inconceivable, 10 years ago.
    This is naturally very encouraging to all of us. We can 
attribute much of this success to the Ryan White CARE Act, and 
to the many groups and individuals, who have fought tirelessly 
for this cause, many of whom are here with us today.
    Thanks to powerful drugs and powerful drug therapies like 
the cocktail, people with HIV and AIDS are now living longer. 
While this is good news, and we all agree with that, I fear 
that many in this country now see AIDS as a chronic disease; 
one that has effectively been contained. I hope we are not all 
foolish enough to believe that.
    Africa, as has been stated, is a prime example. Last 
December, I traveled through six different countries in sub-
Saharan Africa, and I saw first-hand how unmerciful this 
disease is, and how uncontrollably it is spreading over there.
    One in four people in that country, in that continent, or 
in that area, anyway, will die from the disease. Citizens there 
can not afford these expensive drugs, and they also lack the 
education, and have cultural obstacles to overcome, as well, in 
learning how to deal with this disease.
    So let us not forget the toll that AIDS has taken, both in 
this country, and across the globe. We can not afford to become 
complacent in how we view this disease. That is why it is so 
vital that we reauthorize the Ryan White CARE Act, and more 
importantly, that we continue to improve upon it.
    Ms. Cubin. Thank you, Mr. Chairman, and I yield the balance 
of my time to Mr. Coburn.
    Mr. Coburn. Thank you. Mr. Chairman, I would just ask 
unanimous consent to enter into the record an article from July 
6, from the Bay Area Reporter, which lists exactly the raw data 
on the number of new HIV infection cases, and the fact that the 
``900'' number is not an official Department of Health number.
    Mr. Bilirakis. Without objection, that will be the case.
    [The information referred to follows:]

               [Tuesday, June 6, 2000--Bay Area Reporter]

              DPH bungles on HIV infection rate projections
                            by Terry Beswick
    Sensational headlines circled the globe last Friday, June 30.
    ``S.F. HIV Rate Surges; alarming incidence of new infections raises 
fears of scourge to come,'' exclaimed the San Francisco Chronicle.
    ``New HIV infections soar in San Francisco,'' declared the Reuters 
new service.
    ``The percentage of new HIV cases in The City almost tripled from 
1997 to 1999,'' said the Examiner.
    Epidemiology oftentimes seems to be more of an art form than a 
science, at least in this town. And when it comes to the human 
immunodeficiency virus, San Francisco can seem like ground zero in the 
art of going out on a limb with disease forecasting.
    San Francisco health officials were working overtime feeding juicy 
quotes and leaking unpublished data to the media last week--timed in 
advance of media frenzy surrounding next week's International AIDS 
Conference in Durban, South Africa, and also in the midst of heated 
negotiations in Washington, D.C. where Congress is poised to cut Ryan 
White CARE Act funding to San Francisco due to a dropped AIDS caseload.
    The crux of the stories was that DPH had reviewed a dozen or so 
indicators of the HIV infection rate in the city's gay community--in 
particular looking at the number of men who took the HIV antibody test 
at anonymous test sites--and found that the rate of new infections had 
doubled, or even tripled, in the last few years.
    DPH officials were quoted saying that the estimated number of new 
infections among gay and bisexual men in San Francisco had gone up from 
500 to almost 900.
    Now, the same officials are singing a different tune.
    ``The 900 number is not an official DPH number . . . The comparison 
to sub-Saharan Africa is unfortunate,'' Dr. Willi McFarland, an 
epidemiologist with DPH told the Bay Area Reporter, referring to a 
quote he gave to the Chronicle: ``These are sub-Saharan African levels 
of transmission.''
    While all the media reports quoted local officials stating that a 
chief factor feeding the higher infection rate was the fact that people 
with AIDS are living longer, creating a large pool of infected people, 
who in turn are infecting others, McFarland and DPH director Mitch Katz 
were later both instead emphasizing other factors, including the size 
of the gay population itself.
    ``The reason why the [900] number of new infections is a less 
reliable data point is that it's very sensitive to estimates in the 
size of the population,'' Katz told the B.A.R. ``And while I have not 
yet reviewed the documentation that supports the 900 new infections a 
year, what I do know is that part of the increase from 500 is due to a 
better estimate in the size of the gay male population which increases 
its size, and also it may be that the community itself is growing in 
size. Obviously the more gay men or the more people at risk in general 
that you have, the higher the number of new infections.''
    No vote was taken at a closed May 24 meeting of AIDS prevention 
experts in San Francisco organized by DPH and the Center for AIDS 
Prevention Studies of the University of California at San Francisco. 
The meeting was convened in preparation for a ``community consensus'' 
meeting to be held this fall.
    The stated purpose of the meeting was to consider revising the 
estimated number of new HIV infections taking place in San Francisco 
each year, based on data collected from a variety of sources.
    It is no secret among prevention experts in San Francisco that 
there has been an increase in new infections in the gay and bisexual 
community, and a number of factors are feeding into this, chiefly 
``barebacking,'' or unprotected anal sex, behavior likely compounded by 
a concurrent epidemic of ``party drugs'' including crystal 
methamphetamine in the gay community. Prevention experts also point to 
a perception that new combination antiviral therapies have made the 
disease less threatening.
    Using the new detuned ELISA HIV antibody test, which helps 
researchers determine whether an HIV infection has occurred before or 
after 129 days prior to the drawing of the sample of blood, researchers 
applied a complicated formula to come up with their estimates of the 
number of new infections that were leaked to the media sources and led 
to last week's headlines.
    In an unreferenced abstract, among thousands to be published in 
conjunction with the Durban conference next week, McFarland reported a 
2.1 percent infection rate at anonymous test sites in 1996; a low of 
1.3 percent in 1997; 2.3 percent in 1998; 3.4 percent in 1999.
    None of the media reports provided the raw numbers used to come up 
with these annualized percentages.
    In 1996, McFarland told the B.A.R., of 3,505 gay and bisexual men 
taking the test, there were 25 recent infections.
    In 1997, of 3,114 gay and bisexual men, 14 were recently infected.
    In 1998--and here's the big jump leading to all the headlines--of 
3,291 taking the test, 30 were recently infected.
    In 1999, there was an unexplained drop in the number of gay and 
bisexual men taking the test at anonymous test sites, but according to 
McFarland, there were 1,995 who took the test, and of these, 26 had 
been infected within the last 129 days.
    Yet Jim Dilley, executive director of the UCSF AIDS Health Project, 
which operates the anonymous test sites in San Francisco under contract 
with DPH, noted about 9,000 people took the HIV tests in 1999. Of 
those, 127 tested positive, Dilley said, though some of these may have 
been older infections, as the detuned ELISA test was not used.
    At press time, DPH researchers had failed to explain why their 
numbers are apparently a subset of the total number taking the test at 
anonymous test sites.
    ``It's unfortunate that it got out before we were able to say as a 
group that this is our best estimate of the number of new infections,'' 
said Steven Tierney, director of HIV prevention at DPH. ``I do think 
that the number has clearly gone up.''
    ``Obviously we feel very strongly that there is evidence that there 
is increased HIV incidence in San Francisco which parallels the reports 
of increased unsafe sex behavior which we've made previously,'' agreed 
Katz.
    Some of DPH's usual critics were quick to jump on the apparently 
sloppy, incomplete data leaked from DPH to the major media outlets last 
week.
    ``Instead of telling the public how many HIV tests have been 
administered in San Francisco and the consequent number of positive, 
negative and indeterminate results, UCSF and the DPH have concocted an 
elaborate mathematical method using numerous `indicators' and employing 
novel detuned ELISA tests unapproved by the Food and Drug 
Administration to concoct HIV increases on paper,'' said David 
Pasquarelli of ACT UP/San Francisco.
    ``These increases are not real and the study's methods, indicators, 
and testing technology have never before been employed for this purpose 
nor verified by researchers unaffiliated with the AIDS industry,'' he 
added.

    Mr. Bilirakis. I now recognize Ms. Capps for an opening 
statement.
    Ms. Capps. Mr. Chairman, I commend you for holding this 
important hearing this morning, as we seek to reauthorize the 
Ryan White CARE Act.
    Of course, today's topic is one of the most important 
public health issues facing our Nation. The Centers For Disease 
Control and Prevention estimates nearly 1 million Americans are 
living with HIV and AIDS.
    While deaths from AIDS have declined in recent years, new 
infections have remained steady at 40,000 per year. Recent data 
suggests the infection rate is increasing again among 
traditional groups, but also especially among groups that have 
not heretofore registered much infection, and the dramatic drop 
that we saw for a time in the rate of deaths from AIDS has 
slowed down. All of these are matters of concern.
    Clearly, the time is right for Congress to reauthorize the 
Ryan White CARE Act. I really appreciate the speediness with 
which this bill was crafted.
    The CARE Act, of course, as has been mentioned, was passed 
in 1990, after the death of Ryan White, the young Indiana 
activist, who fought for an end to discrimination against 
people with HIV and AIDS. It is hard to believe that was 10 
years ago.
    It was reauthorized once in 1996, with overwhelming 
bipartisan support. The Senate, earlier this month as we know, 
unanimously passed legislation reauthorizing the CARE Act. Now 
it is time for the House to act.
    I am a co-sponsor of H.R. 4807, crafted by my colleagues, 
Henry Waxman and Tom Coburn. I do have some concerns about the 
bill, but I support it for these reasons. It builds on the 
Senate-passed version by adding improvements to Ryan White 
programs, focusing on eliminating disparities, assisting 
historically under-served communities, and bringing those 
individuals with HIV/AIDS who are not receiving treatment into 
systems of care and support.
    It also enhances public participation, and ensures that 
planning councils conduct their business meetings consistent 
with the Sunshine Policies of the Federal Advisory Committee 
Act. H.R. 4807 requires administrative simplification and 
increases funding overall in the Ryan White programs.
    Finally, the bill begins to shift Ryan White funding and 
services, as we have heard, toward the HIV-infected population, 
and not just individuals with AIDS. This is an important 
transition, and an example of how a funding stream needs to 
keep pace with changing demographics, a model which I believe 
you give to the wider health community.
    Mr. Chairman, just yesterday, I heard from Jane Breckward, 
from Santa Barbara Health Care Services, and this is in my 
district. I have worked with her for many years. She works, on 
a daily basis, with members of the community who benefit 
greatly from Ryan White funding.
    She spoke in especially strong support of Title II and 
Title III funding. Title II funding allows for food services 
for people in the community, living with HIV and AIDS; programs 
such as Meals on Wheels and food banks. It also provides for 
housing, counseling, help with emergency housing, first month 
rent, utilities, transportation; basic expenses that can 
determine if someone will be able to afford a place to live.
    Title III funds are used for early intervention, helping 
those who have been diagnosed navigate the options available to 
them during this most terrifying time in their lives. These 
funds can help with medical care, education, dental care. They 
also help those diagnosed understand their insurance options.
    In Jane's words, Ryan White funding is really about local 
control. This program requires that we do a needs assessment 
every year, so that we have a very targeted, specific idea of 
how the population we serve is changing, and how the funding is 
being utilized.
    I believe that Ryan White is the Federal Government at its 
best, really, referring to local expertise, but providing that 
needed helping hand with targeted Federal funding.
    So, Mr. Chairman, although not perfect, as has been 
mentioned, even by the co-authors, I support this legislation, 
and hope that the subcommittee will schedule a speedy markup, 
so that we can move it to the floor for a vote.
    Thank you and I yield back the balance of my time.
    Mr. Bilirakis. I thank the gentlelady.
    Mr. Deal, for an opening statement.
    Mr. Deal. Thank you, Mr. Chairman.
    Certainly, the issue of AIDS continues to be a plague on 
mankind; not only in this country, but across the globe. This 
past week, I met with a constituent of mine who had lost three 
family members. They are victims of a portion of the AIDS 
epidemic that has not been adequately addressed by Congress.
    The mother was given tainted blood back in the 1980's. As a 
result of that and the fact that she was never informed of 
this, she and two of her minor children died of AIDS, as a 
result of that.
    So there are many facets to this issue of AIDS and the 
problems associated with it. I will expect to be introducing 
other legislation very soon that will address those innocent 
victims who were never informed that they were given tainted 
blood back in the 1980's, in order to try to compensate them, 
in part, for some of the problems that have been associated 
with this.
    But I thank you for holding the hearing on this facet of 
the AIDS problem today. I yield back.
    Mr. Bilirakis. I thank the gentleman.
    Mr. Green, for an opening statement.
    Mr. Green. Thank you, Mr. Chairman, for calling the hearing 
today. I want to thank both Representative Waxman and 
Representative Coburn for their work on this important issue. 
As a strong supporter of the Ryan White CARE Act, I hope that 
we will reauthorize this program this summer.
    As you know, Texas has the fourth highest number of AIDS 
cases in the United States, after New York, California, and 
Florida. In the Houston metropolitan area, it is estimated 
through 1998, there were 7,580 persons living with AIDS; 
cumulative cases through 1997 were 16,955.
    The epidemic is changing dramatically in the Houston area. 
According to a needs assessment conducted last year, well over 
80 percent of the persons living with AIDS are male. From 1992 
to 1997, the number of newly diagnosed cases among females 
increased 94 percent, while the number of males decreased 23 
percent. However, in 1997, there were over three times more men 
who progressed to an AIDS diagnosis than women.
    Newly diagnosed AIDS cases in the Anglo community have 
decreased. African Americans have surpassed Anglos in the 
number of newly diagnosed AIDS cases each year, and data 
suggests growing needs within the African American community.
    Heterosexuals represented between 14 and 16 percent of the 
cases in 1998, which is an increase of about 20 percent since 
1994. A majority, 55 percent, are female; and a majority of 
those females are African American.
    The Ryan White CARE Act addresses the urgent concerns of my 
constituents and helps bridge the gaps so that this epidemic 
can be slowed and ultimately stopped.
    Since its enactment in 1990, the CARE Act has directly 
benefited hundreds of thousands of individual clients who have 
HIV. Over the years, the program has helped build an 
infrastructure that enables many people with HIV to assess a 
comprehensive continuum of care.
    In recent years, the development of new treatments has 
resulted in reduction in the AIDS death rate. This increased 
longevity among people with HIV has contributed to an increased 
demand for the HIV care infrastructure.
    In my district, Ryan White providers have experienced from 
30 to 40 percent increases in the number of new patients. This 
increase is understandable, given the success of new 
treatments, when coupled with support services.
    If the United States is to continue to meet the challenges 
represented by this complex epidemic, it is essential that we 
support innovative and flexible solutions to solve our Nation's 
AIDS' problem.
    In closing, I hope to also co-sponsor a bill when the 
impact on the Houston area is available, especially from GAO 
projections. The Ryan White CARE Act, itself, was created in 
this spirit, and is an essential component in our Nation's 
fight against HIV and AIDS. Hopefully, it will be reauthorized 
immediately.
    Thank you, Mr. Chairman. I yield back my time.
    Mr. Bilirakis. I thank the gentleman.
    Mr. Burr, for an opening statement.
    Mr. Burr. Thank you, Mr. Chairman. I will be very brief.
    As an original co-sponsor of this bill, I want to applaud 
the work of Dr. Coburn and Mr. Waxman, in working out the 
differences, with the real belief that we can move forward and 
pass this bill as quickly as we possibly can.
    I yield back the balance of my time.
    Mr. Bilirakis. I thank the gentleman. That certainly is our 
intent.
    Mr. Towns, for an opening statement.
    Mr. Towns. Thank you very much, Mr. Chairman.
    Let me also commend my colleagues, Congressman Waxman and 
Congressman Coburn, for this outstanding job that they have 
done.
    However, as I look and I see in terms of some of the 
problems that we are having with the formula, and also the hold 
harmless provision, I really feel that you might have an 
opportunity here to fight for some additional funds.
    There is a surplus that we talk about, from time to time. I 
think that if we have a surplus, I do not know of a better 
place to use it than here. We are talking about life and death. 
We are talking about people that are dying.
    We have many people that can not get the therapies that are 
available. They can not afford it. In some instances, there is 
no access.
    When you look at all of this, and we think about the fact 
that yes, it is changing, and we know that, I do not feel that 
we are actually doing the kind of things that we need to do in 
order to make certain that we are doing the best job.
    I want to applaud my colleagues for their creative 
thinking. I think they have done a great job in this area. But 
I do believe that this is the time and the opportunity for us 
to fight for additional dollars, because the surplus is out 
there. I can not even call it a surplus until we put more money 
in programs like this.
    So, Mr. Chairman, I want you to know that I stand ready to 
fight for additional funds, along with this legislation. I 
think that if we do that, then with the hold harmless 
provision, the people will not be so frightened by it, because 
what we are talking about here is targeting resources.
    Even though the problem is great, and even if we targeted 
resources, we are still leaving a lot of people out. I do not 
think we should leave anybody out.
    So, Mr. Chairman, let me yield back. I would like to ask 
for permission to put my entire statement in the record.
    Mr. Bilirakis. Without objection, that will be the case.
    [The prepared statement of Hon. Edolphus Towns follows:]
Prepared Statement of Hon. Edolphus Towns, a Representative in Congress 
                       from the State of New York
    Chairman Bilirakis and Ranking Member Brown, and my fellow 
colleagues, today's hearing is of the utmost importance to many in 
America. When most of us first learned of Ryan White HIV/AIDS was a 
very different disease than we know it to be today. Years ago when 
individuals were diagnosed with HIV infection it was an automatic death 
sentence. People once diagnosed marched on a straight course from being 
positive, to developing full blown AIDS, then dying. Today, with the 
development of new treatments such as combination therapy and better 
understanding of the disease, people are living longer, fuller lives 
and are not moving into full blown AIDS as readily. These are the 
wonderful developments that are happening, but there are still some 
very troubling problems that we must deal with.
    Let me illustrate by telling you what the HIV epidemic in New York 
State looks like. Approximately 141,000 AIDS cases have been reported 
and approximately 56,000 New Yorkers are living with AIDS--almost 19 
percent of the national total. There are 8,200 living AIDS cases in 
Brooklyn alone. Of those living with AIDS three quarters of them are 
minorities, and 25% are women. This is just the beginning of the 
picture of HIV disease in New York. The estimate of the number of 
people living with HIV, beyond those with AIDS is 75,000-115,000. These 
numbers are truly frightening to those of us who have been continuously 
working hard to slowdown and stop this epidemic.
    This five-year reauthorization period allows us to take a look at 
where we are in the epidemic and make vital, but careful changes to the 
Ryan White Care Act. I want to acknowledge the work that my colleagues 
Congressmen Waxman and Coburn have done on this bill. But I have a few 
concerns that I want to make sure are fully discussed about this 
important piece of legislation. There has been ample discussion, 
sometimes not always civil, about the ``hold harmless'' provision in 
title one of the bill. The provision is meant to do just what it says 
and help areas be held harmless should there be a shift in funding so 
that patients who need these vital services can continue to be cared 
for.
    Concerns have been expressed to me about targetting provisions 
meant to decrease funding to particular localities. I think we all need 
more money, but the hold harmless provision is there to help us all. 
Admittedly New York City has been assisted by this provision in the 
past. As our cases of living AIDS decrease and we do an even better job 
of keeping people alive with HIV without them moving into full blown 
AIDS we could possibly need the hold harmless provision. I think we 
should take another look and develop one that more closely mirrors the 
Senate version. None of us wants to be in a position of drastically 
decreasing funding for any locality.
    $1.6 billion were appropriated for FY 2000 for the Ryan White 
Program. We should be talking about raising all the EMAs to the per 
patient level of San Fransisco, not redistributing $8 million dollars 
between 51 EMAs.
    Let's move cautiously with some of the changes we are intending for 
the better which may give us unintended consequences.
    I look forward to some enlightening testimony from our invited 
witnesses.
    Thank You.

    Mr. Bilirakis. Ms. DeGette, for an opening statement.
    Ms. DeGette. Thank you, Mr. Chairman.
    I want to add my congratulations for having this hearing. I 
apologize that I will be running in and out, because I have 
another hearing going on at the same time.
    I look at this reauthorization as both good and bad news. 
The good news is, of course, thanks to improvement in the care 
and introduction of the new drug therapies, there has been a 
dramatic decline in AIDS death rates over the last few years.
    Also, due to prevention efforts and, again, the drug 
therapies, the number of pediatric AIDS cases resulting from 
mother to child transmission fell by 78 percent between 1994 
and 1999.
    However, as we all know, the success of these drugs has led 
people to a sense of complacency, particularly among our 
Nation's youth. Some believe that the epidemic has peaked, and 
so that makes it harder than ever to reinforce the message of 
prevention. According to the Centers for Disease Control, there 
are 40,000 new infections each year in the U.S., and half of 
those cases are among young adults and adolescents.
    I hope to hear today what efforts we will be taking to 
address, as Jeanne White, who is Ryan White's mother, said, ``. 
. . the threat HIV poses to the future of our young people.'' 
In addition to pursuing a more focused strategy on the Nation's 
youth, I also would hope that the witnesses today would address 
the issue of maternal and child health.
    I have noted the inclusion of language in this bill that 
targets funding to States that have imposed mandatory HIV 
testing of all newborn infants, or have required testing of all 
newborn infants under which the attending obstetrician for the 
birth does not know the HIV status of the mother or the infant.
    I think that this mandatory testing may be essential in 
some States. However, in States like Colorado, my own State, we 
have been part of the successful national trend, through 
prevention and voluntary testing, to dramatically reduce the 
transmission of HIV from pregnant mothers to infants.
    Last year, there was not a single child born in Colorado 
that had HIV. So as a result, and having come out of the 
Colorado legislature, I can say I think it is highly unlikely 
that a legislature like Colorado's would ever pass legislation 
to require mandatory testing of all new infants.
    Yet, by not doing so, under this legislation, Colorado, 
because of its great success, would be ineligible to apply for 
75 percent of the set-aside funding in this legislation for 
prevention efforts.
    I know a lot of people do not expect me, as a fairly 
liberal Democrat, to be such a Federalist. But I really 
question whether it is the best use of our resources to require 
all States to have mandatory HIV testing, when maybe it is not 
appropriate in some States like my own State, where it might be 
more appropriate in some other States.
    Often, at the Federal level, we pass policies that have an 
unintended consequence. In the CHIP program, for example, we 
have separated pregnant women from infants, as only children 
are eligible for the program. This may be the first time that 
pregnant women have been separated in such a manner, and it 
makes little public policy sense particularly when, as a 
Nation, we need to be concerned about other issues.
    So I would like to ask the witnesses today to talk about 
whether we should provide additional resources to all States, 
without preference, to implement outreach and education to at-
risk pregnant women about the need to know their HIV status, to 
provide safe and confidential testing, and then provide them 
with comprehensive and accessible perinatal care to address the 
issue of perinatal transmission of HIV. That is what Eugene 
Jackson, who is going to testify today, says.
    I would like to know whether Federal policy should be 
changed to allow pregnant women to receive coverage under the 
CHIP program, so they can have access to care that can further 
reduce mother to infant HIV transmission, a prevention measure, 
and other important health care issues like infant mortality.
    I have other issues, as well, Mr. Chairman, but in the 
interests of time, I would just like to again say thank you for 
holding this hearing. I know there are a lot of important 
issues that we are going to discuss. I yield back the balance 
of my time.
    Mr. Bilirakis. I thank the gentlelady.
    [Additional statement submitted for the record follows:]
 Prepared Statement of Hon. Tom Bliley, Chairman, Committee on Commerce
    Mr. Chairman, thank you for having this hearing today. I would also 
like to salute Dr. Coburn and Mr. Waxman for their work.
    The Ryan White CARE Act should address the health care necessities 
of all Americans living with HIV/AIDS equally, without prejudice to 
their race, sex, or place of diagnosis. But, some Americans living with 
HIV/AIDS are treated more equally than others.
     Clearly, the funding allocation of the Ryan White CARE Act needs 
to get a dose of common sense. Our public health system needs to needs 
to be brought up to date in light of the latest scientific 
understanding of the epidemic.
    But in the year 2000, advances in HIV treatment have slowed the 
progression of HIV disease for infected persons on treatment and 
contributed to a decline in AIDS incidence. These advances in 
treatment, as well as factors like the rapid spread of HIV among 
populations not well served by AIDS prevention efforts, have rendered 
AIDS surveillance data significantly less valuable in identifying 
trends in the incidence of HIV infection or the impact of the epidemic 
on the health-care system.
     I note that both the Commonwealth of Virginia and the State of 
Michigan began mandatory confidential reporting of HIV back in 1989. 
According to Loretta Davis-Satterla, the Director of the Division of 
HIV/AIDS-STD with the Michigan Department of Community Health who 
testified before the Subcommittee on Health and Environment on May 11, 
2000, ``Confidential HIV reporting has greatly enhanced Michigan's 
ability to rapidly and effectively respond to the dynamics of this 
epidemic . . . In contrast to AIDS case surveillance, HIV case 
surveillance provides data to better characterize populations in which 
HIV infection has been newly diagnosed, including persons with evidence 
of recent HIV infection. Compared with persons living with AIDS, those 
reported living with HIV infection in Michigan are more likely to be 
women and African Americans.''
    It is imperative that the Ryan White CARE Act be reauthorized to 
provide the incentives to move public health in the right direction so 
that the HIV/AIDS epidemic can be tracked more accurately, and 
appropriate funding and information about this disease be better 
directed.
    Mr. Chairman, I thank you again and I look forward to the testimony 
this morning.

    Mr. Bilirakis. I believe that completes all the opening 
statements, so we will call on Dr. Fox to come forward at this 
point. Claude Earl Fox, M.D., M.P.H., is Administrator of the 
Health Resources and Services Administration.
    Dr. Fox, your written statement, as per usual, is a part of 
the record. We will turn the clock, since you are representing 
the administration, to 10 minutes. Do the best that you can in 
that regard. We appreciate your coming forward, sir. Please 
proceed.

 STATEMENT OF CLAUDE EARL FOX, ADMINISTRATOR, HEALTH RESOURCES 
  AND SERVICES ADMINISTRATION, ACCOMPANIED BY JOSEPH O'NEILL, 
 ASSOCIATE ADMINISTRATOR, BUREAU OF HIV/AIDS, HEALTH RESOURCES 
                  AND SERVICES ADMINISTRATION

    Mr. Fox. Thank you, Mr. Chairman. If it is permissible with 
the Chair, I would like to ask Dr. Joe O'Neill, who is head of 
the HIV/AIDS Bureau, to join me at the table.
    Mr. Bilirakis. By all means, without objection, that will 
be the case.
    Mr. Fox. I want to thank both Congressmen Coburn and Waxman 
for putting this bill together, and the committee, for this 
hearing. The CARE Act certainly literally and figuratively has 
been a lifesaver for millions of people in this country with 
HIV and with AIDS.
    As you have already heard, the epidemic is changing over 
time. We are seeing an increased number of minorities, an 
increased number of women, an increased number of youth, and an 
increased number of uninsured, as have the treatments, that 
have changed drastically, even since the last passage of this 
act.
    The administration is, as I said, very appreciative of this 
bill. There are a number of areas in the bill that we think go 
a long way toward enhancing the care to people with AIDS.
    I would like to run through quickly some of those areas. I 
will keep my comments brief, because I know the committee wants 
to leave time for questions.
    The first is that we are very supportive of the use of 
epidemiological data and the collection and use of the sero-
prevalence data in determining how we appropriate funds, as 
well as how services are provided.
    We agree with the drafters of this bill that it certainly 
gives us a much more current reflection of where the epidemic 
is headed. We think, again, it is very appropriate to use, in a 
variety of areas, looking at unmet needs, allocation of funds, 
et cetera.
    We appreciate the emphasis on the early intervention 
activities. We would very much like, as this bill suggests, to 
be able to target early intervention activities, both in Title 
I and Title II testing, counseling, and referral, like we do in 
Title III, presently.
    On the new supplemental Title II awards, again, we are very 
supportive of these. We do have some concerns about how they 
are constructed, but we are supportive of the concept. I, 
personally, come from a very rural State, and I understand the 
issues that are of concern to the committee here.
    On the new Title III Capacity Grant Program, we know that 
as the epidemic moves into minority communities more than it 
has in the past and into under-served communities, we have to 
look at ways for getting services where they are not there now. 
We think the Capacity Grants will help do that.
    The issue around partner notification, we are supportive 
of, to provide additional resources for the Centers For Disease 
Control, in making that available to States. I was the State 
Health Commissioner in one of the first States to implement 
partner notification.
    We are supportive of the emphasis on quality assurance and 
outcomes and, again, agree with the committee that we need to 
do more in this area. We need to look at process. We need to 
look at outcomes, as well. I also compliment the committee on 
proposing additional resources to make that available.
    The expanded authority for making sure that we translate 
science to practice through our AIDS education training centers 
and with providers, again, we think is very appropriate.
    The issues of accountability have been raised. The GAO has 
looked at fraud and abuse in this program and has, for the most 
part, given the program a clean bill of health. There have been 
some areas where there have been problems, but they said, 
overall, we had adequate controls. We do support the audit 
requirements that are in this bill. I think they help to assure 
accountability.
    The relationship that this bill establishes between support 
services and medical services, we think, is very appropriate 
and very essential. We look on this as medical services being 
the hub and the support services being the spoke. Again, we 
think that it will improve access to care. Then, finally, the 
increased resources to CDC for both surveillance and for 
evaluation, we think is very appropriate.
    There are some areas of concern on the part of the 
administration. I would like to run through these quickly, as 
well.
    The first is the use of Ryan White funds in the area of 
community prevention, broad-based prevention. Let me hasten to 
say, we are very supportive about prevention and very 
supportive of coordination between prevention and care.
    However, we would like to make sure that whatever bill 
passes Congress that the prevention issues are tied, at least 
as far as Ryan White grants are concerned, to the provision of 
primary care.
    The expertise in my agency is in care. It is not in 
surveillance and prevention. We have a number of things that we 
are doing right now with CDC that I would be glad to elucidate 
to this committee. But, again, we support the issue of 
prevention. I think we would like to see, at least as far as 
Ryan White is concerned, that it be tied to primary care.
    The second area of concern is the requirement for mandatory 
testing of newborns. The administration has a very high 
priority on the prevention of mother to child transmission. We 
think this is something, obviously, that needs to receive a 
great deal of attention. But we agree with the OIM that testing 
should be universal and routine, but not mandatory.
    We are supportive of grants to States to increase 
prevention activities to reduce transmission, but we think 
funding should not be dependent on States having to enact 
mandatory testing laws.
    The next area that we have a concern about is the 
administrative requirements around the competitive Title II 
supplemental grants. We, again, agree in concept around the 
supplemental grants.
    Having, again, spent the majority of my career at the State 
and local level, we feel that there probably is another way to 
get this done that would be less administratively burdensome to 
the States, allow us to use some of the existing information 
that States provide in their Title II applications, and 
accomplish the ability to get money out there, but in a way 
that is administratively least burdensome.
    Then the final area of concern is around the FTE issue. Let 
me say, to begin with, that HRSA has placed an extremely high 
priority on additional FTEs for this program. We only have 
about 175 FTEs running a $1.6 billion program. We think we are 
pretty administratively lean in this area.
    However, the requirement to mandate a 20 percent increase 
in FTEs, particularly when there is not a guarantee for 
increased funding, we have some concern about.
    We have placed, for the Agency, a priority in the AIDS area 
for any new FTEs that we are able to get funding for, from 
Congress, for the HIV/AIDS Bureau. I have been very public 
about this.
    We also, during the last year, have allocated some existing 
FTEs from our current programs into the HIV/AIDS program. So I 
think we have made good on trying to make this a priority.
    But we are very concerned that this really removes the 
discretion on the part of the Agency, and mandates an increase 
in the level of funding that we think there may or may not be 
funding there to enact. If that is the case, then we will have 
to take further FTEs from some of our other programs. So we 
have concerns about that.
    Let me say in closing that, again, we think that in general 
this bill goes a long way to improve the care for people with 
AIDS, and the appropriate allocation and utilization of Ryan 
White funding. Again, we appreciate your having us, and to have 
the opportunity to discuss this bill.
    [The prepared statement of Claud Earl Fox follows:]
   Prepared Statement of Hon. Claude Earl Fox, Administrator, Health 
 Resources and Services Administration, U.S. Department of Health and 
                             Human Services
                              INTRODUCTION
    Good morning, Chairman Bilirakis and Congressman Brown and 
distinguished members of the Committee, thank you for inviting me to 
discuss H.R. 4807--``the Ryan White CARE Act Amendments''. It is my 
pleasure to be here today. As you know, the Ryan White CARE Act has 
played an important role since its enactment in 1990 in providing 
health care to hundreds of thousands of individuals living with HIV/
AIDS in the United States.
    I also want to thank you, Chairman Bilirakis, for convening this 
hearing today on this important piece of legislation, and I want to 
express our gratitude to Congressmen Coburn and Waxman and others for 
their leadership on this very important bill.
    The Ryan White CARE Act is more important now than ever. The HIV/
AIDS epidemic is much more complex in 2000 than it was in 1990. The 
volume of cases has increased and the affected population has changed. 
We estimate that between 800,000 and 900,000 Americans are now living 
with HIV/AIDS. Of these cases, about a third of the individuals have 
been diagnosed and are in care; another third have been diagnosed but 
may not be receiving ongoing care for their HIV disease; and the final 
third have not been diagnosed and, therefore, are not in care.
    We must continue to make available quality primary health care and 
services needed to adhere to difficult treatment regimens if we are to 
continue our progress against this relentless disease. While our 
prevention efforts are geared towards reducing new infections, those 
living with the disease must be able to access care and services that 
have proven to be life-saving and cost-effective. To ensure this, the 
reauthorization of the Ryan White CARE Act is one of the 
Administration's top legislative priorities. The Administration is very 
committed to carrying on the tradition of care and treatment of 
individuals with HIV/AIDS through the continuation of this program. We 
look forward to working with your subcommittee as the bill moves 
through the House.
    This morning, I would like to offer you an overview of the HIV/AIDS 
epidemic in the United States, and highlight the importance of the CARE 
Act in providing treatment and services to individuals living with HIV/
AIDS.
                          OVERVIEW OF EPIDEMIC
    The HIV/AIDS epidemic has taken a heavy toll in the United States 
since it was first identified in 1981. Over 733,000 Americans have been 
reported to have AIDS, and more than 430,000 men, women and children 
have lost their lives to the disease. The total number of Americans 
with HIV infection is not available; however, that number is expected 
to be greater than the current number of individuals diagnosed with 
AIDS. Though it began as a disease of gay white males, African-
Americans and Hispanics now have AIDS infection rates several times 
higher than that of whites.
    In 1998, white Americans were about 72% of the total U.S. 
population, but represented just 34% of newly reported AIDS cases. 
African Americans--almost 13% of the U.S. population in 1998--were 45% 
of new AIDS cases that year. New AIDS cases among Hispanics, who were 
just over 11% of the population in 1998, accounted for 20% of the U.S. 
total that year.
    Women represented 23% of all new AIDS cases in 1998; 60% of these 
newly infected women were African American, 20% Hispanic. Two of every 
three women living with HIV are believed to be mothers of at least one 
minor child. These women are, on average, poorer than HIV-positive men 
and are more likely to be unemployed and more poorly educated than 
their male counterparts.
    Youth are increasingly at-risk for HIV infection. About a quarter 
of all people now living with HIV were infected as teenagers. As many 
as half of all new HIV infections occur in people under the age of 25, 
and a quarter of these new infections occur in youth under age 22.
                   ADMINISTRATION COMMENTS ON HR 4807
    The Administration supports the efforts made in developing 
legislation that addresses the many complex issues in delivering 
services to low-income, uninsured, and underinsured persons with HIV/
AIDS. We believe that many provisions in the bill improve upon the 
existing Ryan White CARE Act and offer expanded opportunities to 
develop new ways of ensuring access to life-saving, quality HIV health 
care services. The bill authorizes communities to reduce the number of 
new infections and improve the health and well-being of all Americans 
impacted by this disease, regardless of race, gender, income, 
geographic location, and availability of health insurance coverage. 
Many of the changes in the bill address concerns raised by the House 
minority caucuses.
    Overall, the House bill refines the focus of the Ryan White CARE 
Act by:

 improving access to care for persons who know their status but 
        are not in care;
 improving the quality of health and ancillary services 
        delivered by Ryan White providers; and
 increasing accountability of federal funds.
    The Administration supports efforts in H.R. 4807 to improve access 
to HIV care services. The legislation establishes an important 
precedent in the use of epidemiological data and evaluation studies to 
improve the understanding of HIV's impact in local communities. It also 
allows grantees to assess the demands for services for persons not in 
the care system and establishes comprehensive planning strategies to 
address their complex medical and social service needs. H.R. 4807 also 
recognizes the importance of early intervention services--such as 
testing, counseling, and referrals--as a means to identify, educate, 
and provide services to persons currently outside of the health care 
system.
    Through the establishment of new Title II supplemental awards and a 
new Title III capacity grant program, H.R. 4807 authorizes federal 
resources in rural and historically underserved communities in an 
effort to resolve inequities in the capacity and infrastructure of 
critical HIV-related services. Furthermore, a new partner notification 
program provides additional resources to public health agencies 
currently conducting partner nonfiction programs. These efforts, 
building on the current CARE Act, will significantly improve access to 
important health services for low-income, underinsured, and uninsured 
persons with HIV.
    Quality improvement activities help ensure access to appropriate 
health care services. Ryan White providers should also assess the 
effectiveness of their programs in delivering care to all persons with 
HIV. This bill provides direction in establishing quality programs and 
allows additional resources to be used to meet this challenge. In 
addition, the bill expands the authority of the program to develop and 
implement new medical consultation activities to ensure timely and 
appropriate dissemination of HIV clinical practice standards.
    The Administration has been active in making sure grantees receive 
ample training and technical assistance to improve their ability to 
account for federal funds. The Administration supports the audit 
requirements included in H.R. 4807. Additionally, the bill establishes 
an appropriate relationship between social and health services to give 
all clients adequate access to the benefits of medical care. It 
authorizes funds for the Centers of Disease Control and Prevention 
(CDC) to work with State health departments in establishing 
surveillance and evaluation systems to monitor program goals. Overall, 
these provisions make effective use of federal, state, and local 
investments for providing essential HIV services in the most cost-
effective and appropriate manner.
    While the Administration supports the provisions I just discussed, 
we have concerns with the following key issues:

 the use of Ryan White funds for community-based prevention 
        programs;
 State grants for newborn testing and mandatory testing laws; 
        and
 extensive additional administrative requirements.
    The proposed expansion of Ryan White CARE Act funds to include 
broad community-based prevention activities duplicates existing 
programs and may comprise existing prevention efforts. Activities such 
as case finding, surveillance, social marketing campaigns, and partner 
notification programs--have been funded and administered by the CDC. 
Among Federal agencies, the CDC has the greatest knowledge of the 
administrative and fiscal requirements needed to manage community-based 
prevention activities. HRSA's HIV/AIDS Bureau, which administers the 
Ryan White CARE Act, has neither the expertise nor the administrative 
capacity to oversee the appropriate use of prevention activities in 
communities. Allowing CARE Act funds in Titles I and II to support 
community-based prevention planning and resource allocation would 
realign the CARE Act's fundamental purpose. This realignment could 
result in an increasingly disorganized prevention system, with few 
checks and balances to ensure compliance with established guidelines, 
procedures, or monitoring activities. It may also redirect resources 
away from valuable Ryan White Care and treatment activities.
    The Administration sets a high priority on activities that reduce 
the transmission of HIV from mother to child. Since publication of the 
ACTG 076 findings in 1994, a concerted national effort has brought the 
benefits of HIV testing and appropriate treatment to as many women and 
children as possible. As reported to the CDC, the numbers of pediatric 
AIDS cases peaked in 1992 at 947 cases. By 1998, the number had 
declined by over 70% to just 228 cases.
    Last year the National Academy of Sciences/Institute of Medicine 
(IOM) released its study on preventing perinatal transmission in the 
United States. One of the study's recommendations urged the adoption of 
a national policy of universal HIV testing. As part of this policy, the 
IOM supported HIV screening as ``routine with notification'' and the 
right of refusal; the education of prenatal care providers; improved 
provider practices; performance measures and contract language to 
ensure available health services; improving coordination of care with 
HIV providers; and increasing utilization of prenatal services. The 
IOM, however, did not support mandatory testing laws. Instead, they 
warned that:
        ``The logic of this approach is unclear; newborn testing may 
        confer benefits for HIV-infected newborns, but cannot prevent 
        perinatal transmission. If the national goal is to prevent HIV 
        transmission from mothers to children, the federal government 
        should support, not undermine, prenatal testing and other 
        State-based prevention efforts. The Ryan White CARE Act 
        Amendments of 1996, paradoxically, could have the opposite 
        effect.''
    The Administration supports continued funding for Section 2625 to 
provide grants to States for State-based prevention efforts directed at 
reducing transmission and to providing health services to those who are 
infected. But funding should not be dependent on a State's enactment of 
``mandatory testing'' laws or as a condition of the Ryan White grant 
award. This most important issue must be met with sound policy and a 
long-term commitment.
    The inclusion of staffing requirements is prescriptive. Funding and 
staffing levels for program management activities are appropriately set 
through the Executive Branch budget formulation and Congressional 
appropriation processes. The Administration does not support the use of 
Congressional statute to supplant this decision-making process.
    Other requirements included in H.R. 4807 create an unprecedented 
administrative burden. Although the Administration supports the concept 
of establishing supplemental grant programs within the existing Title 
II base and ADAP programs, administrative requirements in the 
legislation establish a separate and burdensome process for HRSA's HIV/
AIDS Bureau and for State health department officials. State agencies 
currently submit extensive information for annual awards. The 
Administration supports a streamlined process that allows for the 
allocation of resources based on standardized measures and a minimal 
application process based on currently available State data.
    Once again, we welcome the opportunity to work with you as H.R. 
4807 moves forward. I thank you for holding this hearing, and I am 
happy to answer any questions.

    Mr. Bilirakis. Thank you very much, Doctor.
    By the way, certainly I would not ask you personally to 
stay after your testimony, but I think it would be great if 
your office had a representative here, to pay attention to the 
other panelists.
    Mr. Fox. I plan to stay for the full hearing, Mr. Chairman.
    Mr. Bilirakis. We find that that is usually very helpful.
    Sir, your testimony singled out increased resources for 
partner notification as an important prevention tool for the 
program. I would ask you how important of a tool is it to 
identify at-risk individuals, and get them into prevention and 
care programs?
    Mr. Fox. Well, we use this tool in other areas, and it has 
worked. The State I was State Health Commissioner of, the State 
of Alabama, has had partner notification in place. Actually, we 
started sero-prevalence reporting in, I think, 1987.
    They are currently, I think, finding about two partner 
contacts per HIV case that is reported. I talked to the State 
epidemiologist there, yesterday, in fact. I think they feel it 
is quite effective, and is helpful in trying to reduce 
instances of AIDS.
    Mr. Bilirakis. Well, thank you for that, because I am sure 
that we all agree that the best care is prevention; is it not?
    Mr. Fox. Right.
    Mr. Bilirakis. To address the challenge of insufficient 
value being derived from AIDS data alone, the CDC and the 
Council of State and Territorial Epidemiologists, CSTE, have 
recommended that all States and territories include name 
surveillance for HIV infection as an extension of their AIDS 
surveillance activities.
    On May 11 of this year, Surgeon General Satcher testified 
before this subcommittee that he agreed with CDC and CSTE.
    Do you agree with the Surgeon General, CDC, and CSTE?
    Mr. Fox. Yes, sir, the Department supports the sero-
prevalence reporting. We think, again, it gives us a better 
idea of where the epidemic is going.
    I would say, however, that we would need to have 
appropriate confidentiality provisions. In fact, in Alabama, 
when we implemented the sero-prevalence reporting, we actually 
deferred it for a year, until we could get a bill passed 
through the State legislature that gave us some additional 
confidentiality protection around that reporting. But, in 
general, yes, we are supportive of that.
    Mr. Bilirakis. Are you suggesting that in the process of 
supporting it that you feel that there should be either 
additional legislation or some sort of language included in 
this legislation?
    Mr. Fox. I think that States should look at what their own 
State laws provides. There may be some model legislation around 
confidentiality that States could look at and consider.
    I suspect there is some variability around the levels of 
confidentiality protection around this information. I think, as 
any public health surveillance system, the long-term quality 
really depends on the ability to protect the confidentiality of 
the clients involved.
    Mr. Bilirakis. Well, I certainly would agree. I know we all 
would agree with that.
    Well, I would like to invite you to coordinate with this 
committee, in terms of any suggested legislation additions or 
revisions.
    That is very significant, because if we all agree that name 
surveillance for HIV infection should be an extension of the 
AIDS surveillance activities then we ought to be working toward 
that end, altogether.
    Mr. Fox. We look forward to working with you, Mr. Chairman.
    I do think the CDC recommendation, or at least I know what 
was discussion in the Department, did allow a provision for 
States that wanted to have a unique identifier, to do so.
    There are some States, I think, that are providing their 
sero-prevalence data in that fashion, although certainly, some 
States will do it one way, and some are doing another.
    Mr. Bilirakis. All right, I would yield to Mr. Brown at 
this time.
    Mr. Brown. Thank you.
    Dr. Fox, you stated in your testimony that you had some 
concern that community prevention was not sufficiently tied 
into primary care. Could you elaborate on that, and suggest 
what kinds of changes you would like to see us make?
    Mr. Fox. Well, I think some of the changes in this bill 
will increase the prevention efforts. One, the ability for us 
in Titles I and II to do testing, counseling, or referral, will 
help improve our prevention efforts.
    We also want to link, and there are some provisions in this 
bill that allow Ryan White grantees to link with a number of 
other outside providers like emergency rooms, primary care 
clinics, bother HRSA grantees and otherwise, for referral into 
the program.
    But I think my main concern is that HRSA's general emphasis 
for the Department is in access to care. CDC's emphasis is in 
surveillance and prevention.
    What we would like to see is the ability to expand the 
provisions of Ryan White to include those activities around 
prevention, testing, and counseling, that help tie and bring 
people into care, and will hopefully help prevent some cases, 
as well.
    But the primary emphasis on the part of Ryan White has been 
care. I think we want to make sure that the emphasis continues 
to be care, primarily, in the four Titles of Ryan White.
    On CDC's activities and expertise in prevention and 
surveillance, again, we worked with them. We have a number of 
examples that we are working with them on both looking at 
development of data instruments, technical assistance, 
evaluation, joint planning.
    But I think that the primary activities around prevention 
probably should be funded through CDC, and the primary 
activities around care should be funded through HRSA, although 
there is some local overlap.
    We are just speaking to make sure that the continued 
emphasis of this act is care, with some expansion around 
prevention, mainly with it tied to the issues of primary care 
and access to primary care for people with AIDS.
    Mr. Brown. Thank you. I have one last question. We will 
hear later from a witness concerning the case of fraud in 
Puerto Rico. Should we be concerned about a wide-spread or 
systemic problem in care programs?
    Mr. Fox. Absolutely not. There were a number of unfortunate 
incidents. The GAO has looked at them. They can comment for 
themselves. But the GAO report that has been provided to 
Congress basically said there is no wide-spread fraud and abuse 
within the Ryan White program.
    The Inspector General, within the last couple of years, has 
looked at specifically the Title I and Title II programs. In 
those reports, they did state that they felt that there were 
adequate controls in place. So we do not feel there is 
widespread fraud and abuse.
    Having said that, I do not think it is in anybody's 
interest to not have appropriate accountability and controls 
within this program. So we are very supportive of the audit 
provisions in this bill.
    Mr. Brown. Thank you, Mr. Chairman.
    Mr. Bilirakis. Dr. Coburn, to inquire.
    Mr. Coburn. Welcome, Dr. Fox.
    Mr. Fox. Thank you.
    Mr. Coburn. And Dr. O'Neill, it is good to see you both.
    You know, I am somewhat perplexed, Dr. Fox. Is prevention 
not the best care we can give these folks?
    Mr. Fox. Mr. Coburn, this is a somewhat grey area.
    Mr. Coburn. It is not grey to me. Obviously, it is grey to 
you, but it is not grey to me.
    Mr. Fox. I am not implying that prevention is grey. I am 
talking about the issue that I am trying to raise with this 
committee around prevention, and the issue in the Ryan White 
Act.
    As I said earlier, we are very supportive of prevention. We 
think that for prevention there needs to be a significant 
emphasis on the part of the administration and the Congress. 
The Ryan White CARE Act, however, has been primarily about 
care.
    Mr. Coburn. I understand that. My question to you is, the 
people who are treating people with HIV, who have their 
confidence, can impact prevention more than anybody else in 
this country.
    To say that we have a concern about spending prevention 
dollars as we interface with people that are infected, and I am 
not talking about behaviors that are truly under the CDC's 
prerogatives; I am talking about where people are interfacing 
care, that is where we make the impact, in terms of behavior 
change, condom use, and the other things.
    I am extremely concerned that you are concerned that we 
should not be having a strong emphasis on prevention, as we 
interact to help those people.
    Mr. Fox. Mr. Coburn, we support and agree with you on 
having a strong emphasis on prevention. I think the thing we 
want to ensure is that the prevention activities are tied to 
the issues of care. We think there are a lot of opportunities, 
whether somebody is HIV positive or negative, and hopefully, if 
they are negative, to intervene and prevent them from becoming 
positive, in the course of all the things we do around the 
Titles of Ryan White.
    Mr. Coburn. But the other side of that, if somebody is 
positive, to make sure they do not give it to somebody else. 
That is called prevention.
    Mr. Fox. Exactly, and we are in agreement.
    Mr. Coburn. Okay, the other question I have, you know, 
there is a lot of controversy on this grant process for funding 
for perinatal transmission.
    New York State has debunked all the negatives that 
everybody was screaming about, when they said we should not do 
the Baby AIDS that we did. In fact, they passed what we tried 
to pass in 1996. They have seen a marked, marked reduction. As 
a matter of fact, that is where the majority of perinatal 
decrease has come, from the State of New York.
    If I read your testimony correctly, it is the Clinton 
Administration's position that New York should not have access 
to somewhere between $2 million to $4 million a year, in terms 
of perinatal transmission funds under our grant program.
    You know, they have been successful. I would like to 
introduce for the record, if I might, with unanimous consent, a 
report from the State Department of Health in the State of New 
York, where there has been no decrease in people accessing 
perinatal care. There has been no decrease in those coming 
forward to care, because they have mandatory testing, if the 
mother's status is not known.
    The point is, we had one of the members of our committee 
who said Colorado had not had one perinatal. They do not know, 
because they do not test. They have no knowledge of how many 
babies were born in Colorado with HIV. They know the ones they 
tested were not. But they do not know the ones that were not 
tested were not.
    The point is, there is no reason, with what we know today, 
for babies, we can prevent all transmission to babies, through 
somebody who delivers in a facility. I mean, the drug therapies 
are there. So I guess the question is, why would you not want a 
State, which has done the most to reduce perinatal 
transmission, not to get an extra $2 million to $4 million 
through this program?
    Mr. Fox. Mr. Coburn, without speaking specifically to the 
money going to New York State, let me just say that I think we 
would like to see this issue addressed with the least amount of 
Governmental intervention possible, to get the job done.
    We believe that routine universal testing will do that. The 
IOM has recommended that. The two societies that provide the 
primary care for mothers and children, AAP, the American 
Academy of Pediatrics, and the American College of Obstetrics 
and Gynecology, have recommended it. We agree with that.
    We also believe that there are a couple of other examples 
where universal routine screening, in a de facto sense, results 
in virtually everybody being screened. One is the issue of 
newborn screening.
    I think, for the most part, a number of States have 
different programs. But we have the ability, in some States, to 
opt out of that; parents do. We believe that, for the most 
part, 99.999 percent of infants get screened.
    We believe that if this administration, this Congress, this 
country, moves toward routine universal screening for HIV, and 
it indeed becomes routine, which we believe it can, that with 
informed decent, that people have the ability to opt out, that 
the practical effect will be very few will. Again, we think 
that we can accomplish that with probably less Governmental 
intervention than a mandatory bill.
    Mr. Coburn. I would remind you, Dr. Fox, this is not 
mandatory. This is optional for the States. It just says, if 
you are going to do what is best for babies, then we are going 
to help you do it. If you are going to stop all perinatal 
transmission, we want to help you do that, and it is optional.
    Mr. Fox. Excuse me, my understanding, Mr. Coburn, is if you 
tie the funding, at some point, to whether or not a State has a 
provision, it is like the highway funds. I mean, States are 
going to have to do that to get the money.
    I think, again, we feel that there should be informed 
consent. It should be routine. It should be universal. But we 
also agree with the IOM report, that it should be mandatory.
    Mr. Bilirakis. I would suggest that it may be a good idea 
to maybe have a quick second round with Dr. Fox, because I know 
this is a very complex issue.
    But without objection, the letter that Dr. Coburn referred 
to of February 3, from the State of New York to him, will be 
made a part of the record.
    [The information referred to follows:]
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    Mr. Bilirakis. Ms. Eshoo, to inquire.
    Ms. Eshoo. Thank you, Mr. Chairman, and thank you, Dr. Fox. 
How does it feel to have your surname in the news, every day, 
with a President with that same surname?
    You probably noticed that in my opening statement, I asked 
unanimous consent, and it was granted, that the San Francisco 
Chronicle article be made part of the record.
    That article outlines that after years of declining or 
stable levels, the number of new HIV infections almost doubled 
between 1998 and 1999.
    Over the weekend, at the International Aids Conference in 
Durbin, South Africa, Helene Gail of the CDC expressed her 
profound disappointment that this upswing in HIV infection in 
the United States could be a nationwide trend.
    I have a couple of questions to pose to you about that, and 
then a second question. First, does this not suggest that 
communities like those in the Bay area will be facing more 
challenges in caring for people with HIV disease during the 
next 5 years, rather than fewer challenges; and does a loss of 
up to 25 percent of care funds make sense, given this trend?
    My second question is, over the last 5 years, we have 
witnessed a dramatic drop in AIDS deaths, while this news is 
tempered with the estimated 40,000 new infections each year, 
and the growing number of people living with HIV and AIDS. 
Based on your viewpoint, do you believe that any metropolitan 
area or State has sufficient resources to meet the needs of the 
growing number of people living with HIV and AIDS?
    So could you address here your answer to my questions?
    Mr. Fox. Thank you. I am in a terrible position, because my 
mother told me never to get in the middle of family squabbles.
    Ms. Eshoo. Well, with all due respect, I do not think that 
this should be diminished as a family squabble.
    Mr. Fox. No.
    Ms. Eshoo. We are having a hearing on legislation that 
contains provisions that the State of California, which is the 
Nation's State, suffers significant cuts. Then it is 
accelerated in the area that I point to.
    Mr. Fox. We have supported, and continue to support, the 
issue of looking at the formula. One, let me say that we 
support having a hold harmless. The administration has not 
taken a position on the amount of hold harmless. Again, we have 
not said whether it is 2 percent, 10 percent, or 25 percent. So 
I think on that issue, we do not have a position on what the 
amount of the hold harmless should be.
    We do believe that communities should be protected from 
huge funding shifts. I would agree with you on that.
    The whole issue of the epidemic, where the epidemic is 
going, and the new AIDS cases, I think one of the issues that I 
would like to raise is, we have not, in this country, done a 
good job of figuring out how to do behavioral modification.
    I think we have done an excellent job in education. But we 
do not know how to modify behavior. I think this is one of the 
dilemmas with the whole epidemic.
    The second is that we have, as you know, continual new 
waves of people becoming sexually active. I think the education 
process is one that as people grow into adulthood, we have new 
waves of generations that we have to educate.
    I do not think we know how to do this very well. I think, 
again, we are supportive of appropriate prevention services. We 
are supportive of trying to do everything we can to reduce the 
number of people who become HIV positive.
    But, again, I think that the issue of the funding, and how 
that plays out within the cities, the States, the communities, 
other than taking a position that we support hold harmless 
clauses and we do not want to see huge disruptions in funding, 
we have taken no position beyond that.
    Ms. Eshoo. Well, if you do not want to see huge disruption, 
relative to funding, then a 25 percent cut, I think, would fall 
into that category of a huge disruption.
    That is why I said in my opening statement that I think 
that the Senate has it right. Because it does not do the harm 
that a 25 percent hold harmless would do.
    Is there anything else that you want to add about the 
upswing, in terms of cases?
    Mr. Fox. I think, again, this whole epidemic is changing. I 
think the issue of whether it is HIV fatigue; whether it is the 
fact that we have people, because of the new treatments, and 
because of the improved therapies, thinking that they are 
somehow immune to contracting HIV; but I think it is probably a 
combination of all of those.
    Ms. Eshoo. All right, thank you, Mr. Chairman. I yield 
back.
    Mr. Bilirakis. I thank the gentlelady.
    Mr. Bryant, to inquire.
    Mr. Bryant. Thank you, Mr. Chairman.
    I want to be as quick as I can here. I have three 
questions, Dr. Fox, that I will ask you. I would ask, if you 
would, get copies of these questions, and answer these in 
writing, and submit these as a late filed exhibit to your 
testimony today.
    The first one is, as you know, women and minorities are 
represented in higher proportions in HIV cases reported, than 
in AIDS case reports. Do you believe that changing the Ryan 
White CARE Act funding formulas to take into account HIV cases, 
rather than just AIDS cases, would be a more effective way to 
better target funding and address some of the health 
disparities that exist for minorities?
    No. 2, what are the challenges of HIV care in rural 
America, and what is your administration doing to expand 
services to rural areas?
    No. 3, in the GAO testimony, they indicate that ``the 
distribution of discretionary grants has generally mirrored the 
pattern of the formula grants.'' I want to know, how can that 
be, if the discretionary grants reviewed and awarded by your 
administration are on merit and degree of need?
    The last question I would like to ask you, and I would like 
a short answer, if I could, in your testimony, you indicate, 
and I agree with Dr. Coburn, about the prevention aspects of 
this. But you indicate that the CARE Act funds, by allowing 
these funds to provide early intervention and prevention 
services, that would re-direct resources away from the valuable 
Ryan White care and treatment activities.
    Yet, last month, your administration used funds from this 
Ryan White CARE Act to pay for over 100 individuals to fly to 
the Virgin Islands for a meeting.
    Another example, the San Francisco AIDS Foundation has over 
$5 million in salaries alone, last year. This year, it has 
spent some $55,000 in an unsuccessful effort to defeat a ballot 
initiative, which had absolutely nothing to do with HIV and 
AIDS.
    Do you view such expenses as this trip to the Virgin 
Islands and this ballot initiative as appropriate use of these 
very valuable funds?
    Mr. Fox. Mr. Bryant, I do not have enough information on 
the ballot initiative to comment on it. We obviously do not 
support money being spent for that.
    The meeting that you allude to in the Virgin Islands was a 
meeting of 150 Ryan White providers. These were physicians. As 
you know, the Virgin Islands and Puerto Rico have three of the 
six highest AIDS incidents areas in this country. We rotate the 
meetings that we provide for the providers.
    This meeting was held in the summer. It was held at a time 
when the hotel rates were about comparable to hotel rates 
within the U.S.
    We also used it as a mechanism to raise visibility for the 
AIDS issue in Puerto Rico and the Virgin Islands. If the Virgin 
Islands were a State, it would have a higher Medicaid match 
than Mississippi. The amount of poverty and the incidents of 
disease there is tremendous.
    So, again, this was not 100 to 150 bureaucrats. This was a 
group of physicians who were there, learning about AIDS 
therapies. There were visits to the clinics there in the Virgin 
Islands. Again, we think that with those types of meetings, we 
try to rotate those meetings in high incidents areas.
    Mr. Bryant. Let me cut you off here, because I want to 
yield some time. But very quickly, you might want to expand on 
your answer on that question, too, if you feel like you need 
to. Also, if you could reference the salaries in the San 
Francisco office, being at $5 million last year.
    At this point, I yield the balance of my time to Dr. 
Coburn.
    Mr. Coburn. Dr. Fox, I think the San Francisco AIDS 
Foundation really does a pretty good job. I am not out to get 
them in the hold harmless.
    You know, we have seen an almost 14 percent to 15 percent 
annual increase in HIV funds, through the Ryan White CARE Act. 
Mr. Porter, who chairs the Appropriations Committee, is 
dedicated to make sure that we are funding an increased amount, 
and then we have done supplemental money on ADENT.
    I guess the thing is, even under our hold harmless, the San 
Francisco AIDS Foundation will probably not see an actual 
dollar decline. Plus, they have a reserve, right now, of $7 
million in the bank.
    So do you think it is a legitimate concern that the hold 
harmless, as we have outlined, is too aggressive? In your 
opinion, is it too much?
    Mr. Fox. Mr. Coburn, if I were to comment on that, it would 
be strictly my personal opinion.
    Mr. Coburn. Well, I would like to have your personal 
opinion.
    Mr. Fox. I would rather not give it.
    Because I am here representing the administration. I am not 
here representing myself.
    Mr. Coburn. Well, let me ask you another question. If we 
could have the posters put up. I think this will show it for 
everybody.
    Mr. Bilirakis. The time has expired. Now we are going to 
have a second round.
    Mr. Coburn. All right, then I will withdraw that. We will 
just leave the posters up.
    Mr. Bilirakis. Thank you.
    Mr. Waxman, to inquire.
    Mr. Waxman. Thank you, Mr. Chairman.
    Mr. Fox, we are pleased to have you here today.
    I do want to correct the record. The bill does not mandate 
testing of newborns. It does provide funding for those States 
that do chose to mandate those tests. It gives them some 
priority over some of the funds.
    We tried, in this legislation, to build on HRSA's efforts 
by focusing the CARE Act on eliminating disparities in services 
and access, and on helping historically under-served 
communities. Would you say the bill is successful on this 
score?
    Mr. Fox. Yes, sir, very much so, and we think this will 
give us the ability to better target the resources.
    Mr. Waxman. I know we have a broad agreement with you on 
virtually the entire bill, but I want to discuss the remaining 
concerns that you have raised.
    First, I share your concern with duplicating prevention and 
surveillance activities between CDC's programs and Ryan White. 
For example, at one point, there was a proposal to authorize 
surveillance activities through Titles I and II. But we decided 
against creating competing funding streams for precisely the 
reasons you have mentioned.
    In fact, the intent of the House bill is two-fold: to fund 
outreach activities, consistent with early intervention 
services, and to promote greater coordination of HIV prevention 
and treatment services at the local, State, and Federal levels.
    I know you strongly support these policies. I think it is 
very important that we make clear that this is the intent of 
the House bill. Would your staff be willing to join us in 
clarifying through report language the policies underlying the 
House provision?
    Mr. Fox. Absolutely, Congressman.
    Mr. Waxman. I also appreciate your concerns about the Title 
II supplement. I know it will be difficult for HRSA to 
administer these programs efficiently. But as we will hear 
today, the States and the community groups feel strongly that 
awarding the supplemental grants, based on ``severe need'' is a 
very important goal.
    We want you to be able to use as much existing data as 
possible in this process, but also push forward the process of 
developing standard, quantitative criteria. We asked you to do 
this in 1996, and we want you to try again. It is very 
important, and it would create a more equitable grant program. 
Can we count on your agency to help us accomplish these goals?
    Mr. Fox. Mr. Congressman, we will work with you on this in 
any way we can.
    Let me just state that we are administratively extremely 
thin in the AIDS Bureau. We have a small number of FTEs for the 
amount of work that we are doing. On the planning grants, we 
have 60 new planning grants, based on last year, working with 
the CDC.
    We support the issue of supplemental grants. I think we 
want to do it, though, in the least administratively burdensome 
way possible, both for us and for the States. But we look 
forward to working with this committee and the House on that.
    Mr. Waxman. You expressed concern about the perinatal HIV 
program. I share your beliefs that voluntary outreach 
counseling and testing of pregnant mothers does more to prevent 
perinatal transmission than mandatory newborn testing.
    But the provision expands funding for the existing 
Perinatal HIV Grant Program from an existing $10 million to $15 
million. There is a set-aside for mandatory newborn testing 
States. But unexpended set-aside funds are also rolled over, 
back into this $15 million. Most importantly, all of the $30 
million can be used for voluntary outreach counseling and 
testing of pregnant mothers.
    Given that and the support of the Title IV community 
groups, would you not agree that this provision goes a long way 
toward providing additional resources for voluntary counseling, 
testing, and outreach of pregnant mothers?
    Mr. Fox. Yes, sir, we would agree.
    Mr. Waxman. We will hear later today from a witness 
concerning the case of fraud in Puerto Rico. You have already 
indicated that we have these kinds of situations. But do you 
think we ought to be concerned about widespread or a systemic 
problem in the CARE Act programs?
    Mr. Fox. Mr. Waxman, the GAO has looked at it and said 
there is not a widespread problem. We, again, agree with the 
provisions in this bill. We want to do everything that we can 
do within reason to make sure that these funds are well spent. 
But we do not believe that it is a widespread problem.
    Mr. Waxman. You have had the opportunity to review the 
House and the Senate bills. We take a different approach to the 
new Title II supplement, making it broadly available, instead 
of limiting it to a small number of cities.
    Is it not possible that States will want to use the funds 
in rural areas or towns, which are too small to qualify, under 
the Senate's definition of emerging communities?
    Mr. Fox. Well, I think, actually, that is one of our 
concerns about the competitive process of the Title II 
supplemental awards, that some of the largest cities, who have 
the ability to put together a really shiny grant application, 
are going to be able to do that. If it is competitive, they may 
still end up with a big chunk of the money.
    If the intent here is to get those funds out to rural 
communities, to under-served communities, those are often the 
communities that have the least ability to put together a 
competitive award. We just think there are some other ways to 
get at it.
    We support getting the money out there. There are a lot of 
communities in need. But I think we have concerns that a 
competitive process may actually keep us more where we are than 
where this committee wants to go.
    Mr. Waxman. Thank you very much.
    Thank you, Mr. Chairman.
    Mr. Bilirakis. I thank the gentleman.
    Ms. Capps, to inquire.
    Ms. Capps. Thank you, Mr. Chairman.
    I want to thank you, Dr. Fox, for your cooperation, your 
testimony, and for the impressive work that HRSA has done, 
working with this subcommittee in developing a bill.
    This is my first opportunity, being in Congress, to be a 
part of a hearing on AIDS in this subcommittee. I spent a lot 
of years as a public health nurse in my community. I am very 
aware, when the Ryan White Act was first enacted, from the 
community's perspective. I would like to use my time to explore 
two areas and learn from you.
    One is on the relationship between two Governmental 
agencies, in the area of prevention, if you would just get into 
the nuances of that a little bit more.
    Your agency knows a lot about AIDS transmission and, of 
course, is part of the prevention activity. Yet, the 
responsibility of prevention belongs to CDC, as their mandate. 
But you do, certainly, cooperate in that area.
    That is part of the ever-changing picture. It is 
challenging for me to get a grasp on how this population and 
the demographics have moved around in this brief 10 year period 
of Ryan White.
    Then the second part is equally challenging, with the 
different disease entities, in terms of life lengthening, life 
span, and how that care gets translated into what kind of 
support does the AIDS patient need in our community, and to 
remind you of the compliment that Ryan White received from my 
local people, about it being a local partnership.
    They feel immensely thankful that they can be part of the 
process of deciding where the dollars will go. So, again, it is 
a congratulations, but also a seeking to learn from you.
    Mr. Fox. Thanks. As you alluded earlier, this is a local 
program. Two-thirds of the funding decisions are made locally, 
in Ryan White.
    Let me just say quickly, and Dr. O'Neill may want to 
elaborate, we have a number of interactions with CDC. Since I 
have been HRSA Administrator, we have worked hard to try to 
make sure we had appropriate interface with both that agency 
and with the prevention services.
    The first is, we have a number of activities that we have 
been working jointly on, looking at development of surveillance 
and data instruments across the two agencies. We are working on 
the joint evaluation projects. We are working on some joint 
best practices models, looking at the interface between 
prevention and services, and how to better do that.
    Then, finally, we have been working on issues of locally 
how to get the services; in other words, how to have the two 
planning counsels work together and plan together in a way that 
brings together prevention and care.
    Finally, we have an ongoing series of routine calls between 
our staff and CDC's staff, to talk about issues that we are 
working on. Dr. O'Neill may want to elaborate further, but we 
do have a lot of activities going on with CDC. We are going to 
continue to try to improve that, but in all areas, data, 
technical assistance, evaluation, local planning. We are 
working jointly with them.
    Ms. Capps. Thank you. I guess in light of all of this, too, 
I will await to hear from your friend. With all the effort that 
has gone on in the last 10 years, it is really important that 
we stay on top of this now. We are concerned about our 
communities becoming complacent, and certain populations 
relaxing in their behaviors. That is, to me, a real challenge 
and a real message that I hear today, in the questions to you.
    Mr. Fox. Let me just say, again, we want this to be a CARE 
Act with a strong prevention component, linked to what we do 
around AIDS.
    Mr. O'Neill. I would just add that we are really treading 
in an area that this linkage between prevention and care is not 
one that I think there is any clear-cut, right answer to, at 
this point.
    By that, I mean that from the point of view of a practicing 
physician, I absolutely agree with Dr. Coburn in that very 
effective prevention occurs and can occur in that one-on-one 
clinical setting. We very much feel that that is actually an 
area that HRSA has great expertise in.
    When you think about what we do, most everything of what we 
do is about supporting one-on-one interventions between 
provider and patient. We are very committed and very interested 
in continuing to expand the ability in doing prevention in that 
area.
    I think way on the other end, it is very clear that we do 
not do population-based, broad surveillance and large programs. 
But there is this area in the middle that I think, quite 
frankly, we are all trying to grapple with, as health 
professionals and as legislators, and everyone to try to figure 
out what is the optimal way, both to accomplish this, and what 
is the optimal structure between the different agencies that 
are going to do the best and most efficient job of 
accomplishing this goal.
    These are areas where people of, I think, very good will, 
could have some disagreement. But the overall point is, I 
think, very clear, that we have got to do a better job in 
prevention, and that there is a tremendous area in this one-on-
one clinician to patient setting, as you know, as a public 
health nurse, that you can really accomplish a tremendous 
amount, that you are not going to get with broad-based efforts.
    Ms. Capps. I appreciate that, and I yield back.
    Mr. Bilirakis. Thank you.
    Ms. DeGette.
    Ms. DeGette. Thank you, Mr. Chairman.
    First of all, Dr. Fox, thank you for coming out to my 
district to see the Fitzsimmons Campus. I know they were very 
excited to have you there.
    As a pediatrician, I think you have got a unique 
perspective on prevention strategies for youth. As you know, in 
my opening statement, I talked a little bit about the sense of 
complacency among our Nation's youth about the threat of HIV 
and AIDS.
    I am wondering if you can talk briefly about what 
additional steps you think that we can take, as we talk about 
the future of the CARE Act.
    Mr. Fox. Well, let me say first, we serve youth through all 
of the Titles of Ryan White, currently. We have a specific 
emphasis in Title IV on youth. We have just funded five new 
projects, trying to look at ways to get youth into care. We 
have some activities, a reach project with NIH, that we are 
working on, as well.
    As I said, I think the bill to expand testing, counseling, 
and referral in Titles I and II will offer some opportunities 
to intervene with youth, as well as with others.
    Then, finally, we have had some internal discussion. As you 
may or may not be aware, the Agency administers one of the 
Abstinence Programs within the Department. We have had some 
internal discussions about ways to link perhaps some of what we 
are doing in Ryan White with what we are doing in some of our 
abstinence sites. Obviously, if we are discussing abstinence 
with kids, we ought to be talking about the risk of HIV/AIDS.
    So I think there are some opportunities there that we can 
take advantage of, with other grantees that we have. I think 
those are the things that we currently can do. Obviously, this 
is a huge area. You know the number of 50 percent of the new 
infections are among individuals under age 25. So this is a 
huge area of concern for us.
    Ms. DeGette. Thank you, and let me follow up on another 
area that I am concerned about. That is the role of Medicaid in 
the CHIP programs, in providing increased access for people 
with HIV/AIDS.
    I am wondering if you can talk about whether you think that 
role can be expanded, such as expanding coverage to pregnant 
women in CHIP, just as we have in Medicaid?
    Mr. Fox. Yes, the administration is very supportive of 
looking for ways to work with States on ways to try to expand 
and get into family coverage, and to broaden the coverage. 
Certainly, we want to cover all the kids. But I think we are 
interested in going beyond that, in any way we can. So there 
are some things that are evolving within the Department right 
now that hopefully will impact that.
    The second thing is, I would like to use this opportunity 
to say that one of the issues around ADAP in the Title II Ryan 
White funding, and one of the reasons that we have problems 
with significant waiting lists, limitations on medications, and 
others within the States, is the Medicaid policy.
    In some States, it is very, very restrictive around 
services to people with AIDS. When that happens, it throws more 
demand on the ADAP Program.
    So one of the things that we have not been able to mandate, 
because obviously, Medicaid is a State program, is to try to 
jawbone and encourage States to really look at what they are 
doing with their Medicaid programs, and to not limit the 
prescriptions to try to maximize services to people with AIDS. 
Then we can use Ryan White, the ADAP funds, for those people 
that do not have Medicaid.
    Ms. DeGette. Right.
    Mr. Fox. So it is an important issue. It dramatically 
impacts the waiting list and the provision of services through 
the Ryan White CARE Act.
    Ms. DeGette. Just to follow-up, it would seem to me that 
you really need that continuum of care for pregnant women. So 
if you are going to cover them, if they are eligible for 
Medicaid, similarly, if their child who is born may be covered 
by CHIP, it might be more effective to cover that pregnant 
woman under CHIP, as well.
    Mr. Fox. Exactly, and let me tell you one other thing that 
we are exploring. That is the issue of trying to look at the 
interface, at the State and community level, between Ryan White 
funding, between Medicaid, and between Medicare.
    Ms. DeGette. Good.
    Mr. Fox. I think our goal ought to be to develop as 
seamless a system as possible, at the community level, for 
people with AIDS with the least amount of eligibility 
requirements. That is something where, again, I think that we 
have a lot of work to do in the Federal Government.
    Ms. DeGette. Let me just interrupt for 1 second and say, do 
not forget CHIP in that equation, because what we are trying to 
do with that program is cover more and more kids who are 
slightly above the Medicaid eligibility limit. Part of the 
problem we have had in implementing that program is that it 
does not interface well with the existing issues.
    Mr. Fox. Exactly, and there are huge opportunities under 
CHIP, as I am sure you are aware, to expand coverage for mental 
health services, for adolescents, and other types of services 
that are generally lacking for other parts of the population.
    I think the ability to intervene there, in both HIV issues 
as well as other issues, is tremendous. Some States are taking 
advantage of it, and others are not.
    Let me just mention one other thing that Joe just reminded 
me of. We have just put together the first text ever on the 
guide to clinical care for women with AIDS. We think this is 
going to be a resource to States, to communities, to grantees, 
in issues around maternal and child health in the issue of 
AIDS.
    There has not been a textbook like this done. We are going 
to be publishing it in Spanish. Again, it is just one example 
of some things we are trying to do to help communities deal 
with this issue.
    Ms. DeGette. Thank you.
    Thank you, Mr. Chairman.
    Mr. Bilirakis. Mr. Towns, to inquire.
    Mr. Towns. Thank you, Mr. Chairman.
    Let me begin by saying, are you pleased with these planning 
councils?
    Was this asked before I arrived?
    Mr. Fox. No, no.
    Mr. Towns. Okay.
    Mr. Fox. You know, I think that the planning councils 
fulfill a very important function with local input into how 
services are provided. What this bill and what this committee 
is going to do in the next iteration of Ryan White, we think, 
will continue to improve what the planning councils do.
    The planning councils will be asked in this bill to tie the 
provision of care to the issue of unmet need. I think that we 
are very supportive in trying to define who is not being served 
in the community. We think that the planning council 
recommendations around care should be based on what the needs 
are in that community, and they are going to vary in every 
community.
    We think that, again, there should be an emphasis on 
finding who is not in care, trying to get them in care, and 
then providing that ray of support services to keep them in 
care.
    So I think that we feel the planning councils have 
fulfilled an important function. We support the provisions in 
this act that we think will empower planning councils to do an 
even better job in the appropriate allocation of resources 
within the communities.
    Mr. Towns. How does this bill that we are discussing today 
address the concerns of the Congressional Black Caucus? As you 
know, they were concerned about access. They were concerned 
about community organizations. They were concerned about 
continuity.
    To be specific, you know, one of the things that we saw 
with programs and we saw with funding is that you would 
sometimes spend a great deal of money, setting up a kitchen 
that would provide nutrition for clients, patients.
    Then the next cycle around, they would not be funded. But 
in the meantime, you would put all this modern equipment in 
there to provide food services, and now they are not even 
funded. This becomes a waste of money, in the sense of the 
word. Because if they are not funded, and therefore the program 
does not operate. What happens to the equipment? It is just 
there.
    So how does this address some of the concerns that the 
Congressional Black Caucus had?
    Mr. Fox. Mr. Towns, I think it does address some of those 
concerns. The first is, I think the use of HIV prevalence data 
is going to push the services in the CARE Act more toward 
services to minorities. It is going to push the services more 
toward services to women. I think it is going to help us better 
target resources to where the epidemic actually is now.
    The second thing is, this bill provides for a series of 
capacity grants that we can not currently do, that are going to 
allow us to be able to go into a minority community and work 
with the minority group, who perhaps wants to provide services, 
but does not have the capacity to do that now.
    We can help them set up systems. We can go in and help them 
add another site to provide dental services in an African 
American community.
    We do not have that capacity to do that in all the Titles 
of Ryan White. We think that this bill is going to give us the 
ability to do that. We are going to be better able to target 
funds.
    Then, finally, the provisions that think around looking at 
quality and looking at outcomes is something that we are very 
supportive of, to make sure that every dollar we spent helps 
improve care in some way.
    Then, finally, there is the issue of tying, making sure 
that all of the services that are provided in your community 
are tied to enhancing somebody's care, and making sure that 
they get in care, stay in care, or get better.
    This bill, again, supports that. We think it will help very 
much to make sure that resources are more appropriately 
targeted and will follow the epidemic.
    Mr. Towns. Let me close by saying this. I have two more 
questions, but if I do it this way, maybe I can get it without 
asking those two other questions. Is there anything more that 
we should do? I am talking about this committee.
    Mr. Fox. I do not know that I have a suggestion to say that 
the majority of the provisions of this bill, we are very 
supportive of. We think this bill really does reflect what we 
need to do with next iteration of Ryan White. We look forward 
to working with the committee on the provisions of this bill.
    But I think, for the most part, this bill moves in very 
appropriate directions, as far as what we ought to be doing to 
make sure that these dollars are well spent.
    Mr. Towns. Mr. Chairman, let me just indicate that I plan 
to send two questions in. I would hope that I could get an 
answer for them in writing.
    Mr. Bilirakis. Oh, yes, without objection, that is always 
the case with our witnesses, anyhow.
    Mr. Towns. Then let me yield back.
    Mr. Bilirakis. I thank you.
    Well, we are going to go into a very brief second round.
    Let me ask you, Dr. Fox, your opening paragraph said the 
epidemic is changing. Ms. Eshoo and others have emphasized 
that. Ms. Eshoo has referred to the additional challenges that 
we are faced with now, because the epidemic is changing. Why is 
the epidemic changing?
    Mr. Fox. Well, the epidemic is changing for a lot of 
reasons, Mr. Chairman. I think one is we have pattern of 
substance abuse in this country, that is providing for 
infection, in many instances, through heterosexual sex, that 
has taken the epidemic to the realm of women. We have, again, 
minority communities, for a variety of reasons that do not have 
access to care. So there are a number of reasons why the 
epidemic is changing.
    But I think that we certainly feel that the CARE Act, and I 
think the GAO supports this, is providing funding to the 
populations that reflect where the epidemic is going.
    Forty-five percent, I think, of all new infections are in 
African Americans. Twenty percent are in Hispanics. About two-
thirds of all the care provided in the CARE Act, overall, is to 
minorities. We do a good job of that.
    Mr. Bilirakis. All right, but I think that is the point. I 
mean, I have co-sponsored the CARE Act and am highly supportive 
of it. We all are. It is going to do an awful lot of good. So 
we are not talking either/or here.
    But, you know, I have the feeling, based on your testimony, 
that we are not emphasizing enough the prevention. Forgive me, 
Ms. White, but I think she would rather have Ryan here with her 
now, rather than being here testifying for the Ryan White CARE 
Act. So the Ryan White CARE Act is very helpful to Ms. White, 
and that is what it was intended to do.
    You know, my personal opinion, honestly, is that we are not 
emphasizing prevention adequately.
    Mr. Fox. Mr. Chairman, I think Dr. O'Neill may be able to 
elucidate it a little bit better than I did. But let me just 
say that we are strongly supportive of a CARE Act that has a 
strong emphasis on prevention.
    But this is a CARE Act, and we want to keep the primary 
function on care, with a strong link to prevention, and to 
provide prevention. As Joe said, it is an issue that, again, we 
want there not to be any new AIDS cases.
    Mr. Bilirakis. Yes.
    Mr. Fox. But I think we want to make sure that we continue 
to provide the care and the resources to people that have AIDS, 
as we do that, and we have to do both.
    But all we are saying is, our primary emphasis and our 
primary expertise within HRSA is care. We are not the experts 
in surveillance and data. We need to make sure that prevention 
is part of what we do, but this act is about care.
    Mr. Bilirakis. Of course.
    Mr. Fox. And, again, I do not think we are disagreeing. I 
am having difficulty clarifying my point.
    Mr. Bilirakis. All right, I am going to yield the balance 
of my time to Dr. Coburn.
    Mr. Coburn. Well, I want to go back to my charts there, for 
a minute. This information was supplied by GAO. It depends on 
which side of the Bay you are on, whether or not you get 
adequately funded. Because you can look at San Jose and you can 
look at Oakland, and then you can look at San Francisco.
    What I would like for you do is defend for me the funding 
for San Francisco at twice the rate of everybody else in this 
country per AIDS case. I would like for you to defend the 
administration's position that that is an adequate 
representation of what we ought to be doing.
    Mr. Fox. Mr. Coburn, again, we agree that there is a need 
to look at the distribution of the funds. We do not take issue 
with that. There are a lot of inequities that exist within this 
country around how AIDS funding is provided.
    But I want to say that when the GAO makes their report 
later, that there are even more issues beyond those elucidated 
in the GAO report. It includes the issue of local support. It 
includes the issue of Medicaid funding. It includes the issue 
of where we are putting our Title III grants. It is very 
complex.
    I think, without trying to defend or take up any particular 
allocation here, we agree that it needs to be looked at, and we 
want to work with this Congress to do that. But we do not have 
a specific position on how the funding ought to be changed.
    Mr. Coburn. Except the supplemental funds mirror that, in 
distribution, in every case. So the supplemental funds will be 
inordinately high in those areas that are inordinately high.
    I guess the answer is, you can not defend that. Nobody 
really can defend it. The fact is that Ryan White funds have 
been going up, on an average, of 29 percent. The first year, in 
terms of hold harmless, is 2.5 percent, or 2.4 percent. This 
year, I believe, we have increased it 14 percent. So a net 
effect is, San Francisco will still see a net increase in 
dollars.
    So, you know, what we need to do is to make sure that the 
black teenager in my district, who is HIV positive, has access 
to just as much, in terms of treatment, care, and longitudinal 
insight, as somebody living in the middle of San Francisco.
    Mr. Fox. But that is what we are trying to do.
    Mr. Bilirakis. The gentleman's 5 minutes is yielded to him 
now, as per the suggestion of Mr. Brown.
    Mr. Coburn. Okay.
    Mr. Bilirakis. So please continue for another 5 minutes.
    Mr. Fox. We would agree with you, Mr. Coburn. I think we 
feel like you should not be disadvantaged by where you live, as 
to what kind of care you get. We agree with that.
    Mr. Coburn. I want to just enter a couple of other things 
in the record. One is, I agree with the GAO. There is not tons 
of fraud in this.
    I also want to compliment your agency. We have worked with 
them, and they have been fantastic, cooperative, giving us good 
insight, not afraid to tell us where we are wrong, and doing so 
in a manner that allows us to come to a conclusion. I think 
HRSA is one of the reasons we were able to work with such a 
good agreement with Mr. Waxman. I want to compliment your 
people for that.
    But I would like unanimous consent to put this in, because 
this is just in Dallas. There were hundreds of thousands of 
dollars that one clinic wasted, that did not go to treat inner 
city blacks for HIV.
    Mr. Bilirakis. Would the gentleman identify that?
    Mr. Coburn. This is an article from the Dallas Morning 
News, dated June 16, 2000.
    Mr. Bilirakis. Without objection, that will be made a part 
of the record.
    [The article follows:]
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    Mr. Coburn. We talked about the IOM recommendations. I have 
them here. What has the administration done to implement these 
recommendations?
    Mr. Fox. Mr. Coburn, the Ryan White CARE Act, as you know, 
particularly through Title III, has had a fairly significant 
involvement in looking at perinatal transmission. There has 
been a lot of effort toward trying to make sure that women are 
both identified and started on appropriate therapy. We have had 
a lot of activities in that area.
    Mr. Coburn. But since this report has come out, what have 
been the steps that the administration has taken, since they 
came out and said that we ought to have universal testing, with 
an opt-out for all pregnant females?
    Mr. Fox. I am going to defer that to Dr. O'Neill, because I 
think he can better answer that.
    Mr. O'Neill. There are a number of things. One I would call 
particular attention to is even actually in anticipation of the 
direction the report is going.
    We instituted a specific program within our AIDS education 
training centers, and actually worked out a contract or an 
agreement between the AIDS Bureau, and the Bureau of Primary 
Care, at the community health centers. We did very aggressive 
training across the Nation, to all of our health centers, non-
Ryan White or Ryan White, around this issue.
    We have obviously done a lot of work, particularly through 
our Title IV program, and I think you are going to be hearing 
more about that from Dorothy Mann, when she speaks. But we take 
it very seriously. We, again, would want to work with you all 
on any additional ideas that would be helpful.
    Mr. Coburn. I would like to ask an additional question. 
From the experience of New York and their testing program, do 
you believe that the data now shows that the claims that women 
will not seek perinatal care, if in fact they are asked to be 
tested, are untrue?
    Mr. O'Neill. I, embarrassingly, am not familiar enough with 
the New York data to give you an exact answer.
    Mr. Coburn. Well, we have actually had an increase in the 
number of women seeking perinatal care, since that was passed. 
So, in fact, the claim against us doing that nationally, and 
against New York doing it, the actual opposite of that has been 
the effect. We should all recognize that. A woman cares for her 
child. If they have something that is going to hurt their 
child, they want to know about it.
    You know, part of the politicization of the AIDS virus has 
hurt us deeply in this country, in handling it properly. The 
last thing I would like to see, before I leave Congress, is for 
us to treat this like the disease it is.
    Dr. O'Neill has been great to work with. He recognizes all 
these issues. I can not be complimentary enough of his service 
to us in helping to put this bill together.
    But, you know, we have to look at what we are taught, as 
physicians, and know that we can be caring and we can be 
compassionate, but we have to recognize the truths of science, 
in terms of this disease. The reason prevention is such an 
important part of this bill, trying to move back toward that, 
is because that is the best care.
    I have to say, I know Dr. O'Neill agrees with that, in 
terms of his interface with his patients. I know that he does 
that. But I would beg HRSA to not let one opportunity go past, 
that does not allow an interface and an emphasis on prevention. 
I believe history is going to judge us very, very poorly, when 
it comes to this epidemic in this country.
    I will relate to you, I met with 27 African AIDS directors, 
less than a year ago. I believe that one of the reasons that 
Africa is in the trouble that it is today is because they 
followed our policies, initially. Consequently, they have an 
uncontrolled epidemic over there.
    So just in closing, my question for you, I would just beg 
you that as you administer these funds, now and in the future, 
that you recognize the important nature, and the other personal 
accountability nature, that if you have this disease, you 
obviously have a responsibility not to ever give it to anybody, 
in any way.
    So where we hear the data of what is happening in San 
Francisco now, we all know what is happening. I mean, the news 
reports are there. The interviews are there, and the public 
health data. We know why there is a rise, because people are 
ignoring prevention, and are having exposed contact.
    It is okay to talk about that. That is what is really going 
on, and that is why it is rising, again. Because it is now 
being seen as a chronic disease, rather than a life-threatening 
disease. I just think that the emphasis has to be there.
    I am sorry I went on so long. I would yield back.
    Mr. Bilirakis. Mr. Brown.
    Mr. Brown. Mr. Chairman, I yield my 5 minutes to the 
gentlelady from California, Ms. Eshoo.
    Ms. Eshoo. I thank the gentleman.
    Mr. Bilirakis. I would suggest that maybe the gentlelady 
take your 5 minutes and her 5 minutes.
    Mr. Brown. If she needs mine and hers, she can do so.
    Ms. Eshoo. I appreciate that very much.
    There are several things that have been cast out here that 
I really think need to be corrected. First of all, we have 
charts up there, which I am glad that one of the staff people 
gave me a copy of, because I think it is an eye test that we 
would all fail.
    But let me just get into some of these funding issues that 
Dr. Coburn has suggested are totally unfair, by this bar graph 
down at the bottom.
    When Dr. Coburn talks about San Francisco funding, he is 
talking about the Bay area funding, No. 1. He stated a little 
while ago something about the San Francisco AIDS Foundation. 
Let the record show that the majority of the funds of the San 
Francisco AIDS Foundation are private funds. I think everyone 
on the committee should appreciate that.
    Now I have here a graph that demonstrates the flat funding. 
This is actually the case today; not what is up there, but what 
is the case today. This flat funding demonstrates over the last 
5 years that the Bay area and San Francisco's actual dollars 
have shrunk.
    So this is a debate between those who argue for per capita 
funding. But they fail to acknowledge that Title I funding in 
San Francisco, over the last 5 years, since fiscal year 1996, 
has essentially remained flat, while Title I funding in the 
rest of the Nation has increased nearly 50 percent.
    Now the formula that has been placed in the House bill, 
which is very different than the Senate, does not recognize 
that services will be de-stabilized. If there was anything in 
this story of Ryan White funding, it was to stabilize funding, 
thereby stabilizing care. That is one of the pillars that holds 
the act up. What the House bill does is to de-stabilize that.
    I agree with something that the gentleman said--that no 
geographic area should be de-stabilized or be penalized. But 
that is essentially where it is with the Bay area, today.
    So I think that we do a real disservice, in terms of this 
entire debate, to somehow suggest that the Bay area gets more 
funding. They do not.
    Now what the Senate recognizes, in their language, is that 
they double the hold harmless clause. I think that that is a 
very important aspect for us to appreciate here because, again, 
they recognized what de-stabilization can do. So they 
gradually, over a period of time, bring the funding down.
    Now in the State of California, there is overall a $3.5 
million loss to the State. What the House language does is a 
$4.5 million loss, on top of that, to the Bay area.
    That is why I raised my voice in opposition to this. I 
think it is very important for the record to show that this per 
capita analysis of the CARE Act funding is really misleading, 
very misleading. Because as I said, from 1996 through the year 
2000, Title I funding in San Francisco has gone down.
    Now I do not know if there is any other member that wants 
to lean in on this. But again, those who argue for per capita 
funding are failing to acknowledge what the actual funding has 
been, over the last 5 years.
    Again, the Ryan White care funds and the act were all about 
not leaving any area in a harmful way. The de-stabilization of 
funds is going to directly affect the care of people, the 
services for individuals, and the continuum of care, as we 
heard Dr. Fox testify to.
    I might add that the Bay area and San Francisco have been a 
beacon of light across our Nation of how to bring together 
services that other areas would model themselves after. We are 
very, very proud of that. We have not only been the hardest 
hit, but we have also offered, I think, a real model and 
example for the rest of the country, of how to care for people.
    Mr. Towns. Would the gentlelady yield?
    Ms. Eshoo. I would be happy to.
    Mr. Towns. It is interesting when you look at this chart, 
the kind of things that you see. What I see, you know, when I 
heard your comments, it seemed to me that we are arguing in the 
wrong direction.
    I think we should be arguing that every EMA be brought up 
to San Francisco. I mean, I think that is what we should be 
arguing.
    I am having difficulty with this. If we are serious about 
what we are doing, why do we not make that argument? We are 
still talking about a surplus. It seems to me that that is the 
kind of way that we should go.
    Even if you take the $8 million that we are talking about 
from San Francisco, and use you spread it across the 31 EMAs, 
what are you really doing?
    I mean, I think, Mr. Chairman, that we should seize this 
moment, and take advantage of this opportunity. Let us deal 
with this issue, once and for all, because I think that this 
opportunity is here. Let us take advantage of it now. I think 
that we know the services are needed, all over this country, 
and we need to provide them.
    I yield back.
    Ms. Eshoo. I thank the gentleman. I think that he has made 
an eloquent statement about some of the innards of the language 
of the bill. Instead of expanding on what we know needs to be 
done, we are delving into one EMA, and disrupting the dollars, 
and hurting the services there.
    I really do not understand why this is being done. Some 
people are grinning, like they have a corner on the market of 
why this is being done.
    Mr. Waxman's work in this area is legend, across the 
country. I think that this is a real unfairness. I will keep 
speaking to it.
    I do believe that the Senate has the right language on 
this, because they recognize that if, in fact, you continue to 
extract funds, that you are going to de-stabilize. That is not 
what Ryan White is about. To do this, I think, is really 
causing harm.
    In the medical profession, there is a saying that says, 
``First do no harm.'' This hold harmless clause is being turned 
on its head. I think it is unfortunate that somehow this 
language has made its way into the House bill.
    This is all part of the record here. I do not know what the 
full committee is going to do with this in the authorization. I 
know that I will keep raising my voice on it.
    So I am going to yield back the balance of the time that 
was given to me. I thank my colleague, the Ranking Member, and 
I thank the chairman, as well.
    Mr. Coburn [presiding]. I thank the gentlelady.
    There are a couple of things that need to be noted, if I 
might add. No. 1, there is no limitation on funding in this 
authorization, whatsoever. So if we can appropriate it, we 
certainly could do it, Mr. Towns.
    Mr. Towns. Would the gentleman yield?
    Mr. Coburn. I would be happy to yield.
    Mr. Towns. Will you join me in that effort and fight for 
it?
    Mr. Coburn. Absolutely.
    Mr. Towns. Thank you.
    Mr. Coburn. Second, I would like unanimous consent to enter 
into the record what was entered into the record when we had 
this discussion 5 years ago, the testimony of Mr. Shepherd 
Smith, who is with Americans for a Sound HIV Policy. We had the 
same thing there.
    The agreement was that when we did Ryan White 5 years ago, 
we all agreed that we were going to come to this point. To act 
like we are not going to do that now, to me, is somewhat 
disingenuous.
    Ms. Eshoo. Would the gentleman yield?
    Mr. Coburn. Let me finish.
    Ms. Eshoo. Would you just clarify that, when you said 5 
years ago we knew we would come to this point; what does that 
mean? You were not here 5 year ago. I was. Maybe you could just 
clarify that.
    Mr. Coburn. I was here 5 years ago, as well. In the Ryan 
White CARE Act, we had an agreement. If you will read the Ryan 
White CARE Act, and I will be happy to pull that out for you 
and let you see it, we were moving in this direction then. We 
agreed that we were going to move in this direction.
    Ms. Eshoo. On what; on the hold harmless?
    Mr. Coburn. The second point I would make is that the GAO's 
testimony, on page nine and also on page two, shows that we are 
talking about EMAs, not the Bay area. There are three EMAs in 
the Bay area. We are talking about one of them that is markedly 
disproportionate to the other.
    The other point that I would make, and then we will move on 
to the next panel, if the gentlelady would like or if the other 
members would like to have time, is the fact that there will be 
probably no cut in dollars for any EMA, especially on the rate 
at which we have increased the funding.
    So although we are talking about a hold harmless, and it is 
2.5 percent in the first year, the likelihood, based on what we 
have appropriated this year, is that the San Francisco EMA will 
receive no decrease in funding.
    With that, I would close my comments. Mr. Green is 
recognized for 5 minutes.
    Mr. Green. Thank you, Mr. Speaker. Again, I apologize, 
because our other committee is going on, plus there are bills 
on the House floor, and I could not be here.
    Dr. Fox, one of my concerns is, I represent a district that 
my only problem with Ryan White in the last four terms, and it 
was really a local problem when we found out, was the services 
not being provided to the growth populations.
    One of my concerns is the increasing number of HIV positive 
or AIDS victims in my district who are women, who also are 
Hispanic women. Do you think the Coburn and Waxman bill can 
address the need for serving these higher growth in 
populations, along with African American woman?
    Mr. Fox. Mr. Green, I think the ability to use HIV 
prevalence data will allow us to better target the resources. 
It will put us more appropriately and more accurately where the 
epidemic is going.
    The other thing we have done is, we have actually used the 
Title III planning grants, and we have 60 new planning grants 
out there now, to help target those resources to the minority 
communities where the epidemic is happening. We have primarily 
targeted the Title III grants, the early intervention grants, 
to non-EMA areas. So the answer is yes, we think this bill will 
help us more appropriately target resources.
    Mr. Green. I know that in the Houston area, we are 
expanding with our EMA, where some of the growth is in East 
Texas or the rural area. There is an effort to expand in that 
area.
    I have one last question. One of the concerns that I was 
announcing was more and more mothers with young children, who 
are infected with the disease. Are the existing programs, 
including housing and family counseling issues, adequate for 
that; and what can be done to ensure that the needs of the 
families are met, also, for these women and the families?
    Mr. Fox. One of the things that we support in this bill 
that is currently in there is the ability to expand the 
activities of Ryan White to work with referral points like 
emergency rooms, where a lot of people go for care, and 
obviously to family planning clinics.
    I know that because we also over see the TITLE X family 
planning budget, there have been increased appropriations there 
to help counsel women coming in for contraceptive services, 
around the issue of AIDS and STDs. So I think there are, again, 
some things in this bill that will help us get out a little bit 
further into the community and, hopefully, both do some 
prevention and some referral for care.
    Mr. Green. Thank you, Mr. Chairman. I yield back my time.
    Mr. Coburn. I thank the gentleman.
    Mr. Barrett.
    Mr. Barrett. Thank you, Mr. Chairman. I appreciate the fact 
that we are holding this hearing. I certainly am proud to be a 
co-sponsor of this legislation. I think that it can improve on 
a law that I consider to be a very good law.
    Obviously, as Mr. Towns and Ms. Eshoo and Mr. Coburn have 
indicated, one of the priorities that we have is providing the 
resources necessary. So my hope is that we do not allow this to 
die over a funding squabble. Dr. Fox, I do not know if you have 
any comments, in response to the funding issue that was raised 
here.
    Mr. Fox. Well, obviously, it is a complex and controversial 
issue. I think the Department has recommended that we look to 
the IOM to do a study and assist this.
    As I have said earlier, there are a lot of factors. The GAO 
will elucidate some of those. But there are other factors where 
the Title III grants are going, and what is happening with 
Medicaid, that impact on the resources within a community.
    We have recommended that IOM give a thorough study to this. 
We have not recommended any particular approach to change, but 
do understand that there are a lot of concerns and inequities. 
We think this is one way to go about it, to try to get a set of 
recommendations that we could bring back to Congress, and then 
move forward from there.
    Mr. Barrett. In the GAO report, on page nine, it does show 
that San Francisco has taken, it looks like, about a $500 hit, 
and the other EMAs have taken between a $100 and $200 hit. Is 
that consistent with what you are planning?
    Mr. Fox. We do not take issue with any of the accuracy of 
the GAO report. I think there are additional factors that 
impact on resources in the communities that are perhaps not in 
there. But we do not take issue with what they have in that 
report.
    Mr. Barrett. Thank you. Again, I think for those of us who 
do not come from areas that receive a great deal of funding, it 
is important that whatever changes we make do not have a 
negative impact on us.
    Again, I do not think anybody likes to fight over money in 
an area like this. So for those of us who would see any changes 
to this bill as a negative impact on our areas, it is something 
that we would obviously have some concerns with.
    So I would yield back the balance of my time.
    Mr. Coburn. Thank you.
    The gentleman from Ohio is recognized for 5 minutes.
    Mr. Strickland. I have no questions, Mr. Chairman, but I am 
looking forward to hearing our later witnesses. Thank you.
    Mr. Coburn. I would like to thank Dr. Fox and Dr. O'Neill 
for being here, and their work, and your testimony, and your 
patience.
    Again, as the chairman of this committee, Mr. Bilirakis, 
has suggested, I think it is very important that some of your 
staff is here for the rest of the testimony, so that that input 
can be considered by you.
    Mr. Fox. Mr. Coburn, we are going to all stay here, 
including myself. So we will be here throughout the balance of 
the hearing.
    Mr. Coburn. We will break for these sets of votes. Then we 
will come back right after the last vote.
    [Whereupon, at 12:07 p.m., the committee recessed for a 
vote, to reconvene at 12:47 p.m., the same day.]
    Mr. Bilirakis. Our thanks to this second panel, not only 
for the knowledge that you are going to impart to us, but also 
for your patience in waiting as long as you have. Actually, it 
is not as long as usually the second panel has to wait around 
here.
    Well, the second panel consists of Ms. Janet Heinrich, 
Associate Director of the U.S. General Accounting Office, 
accompanied by Mr. Jerry Fastrup, Assistant Director; Ms. 
Jeanne White, National Spokesperson for the AIDS Action; Mr. 
Tom Liberti, Chief, Bureau of HIV/AIDS, Florida Department of 
Health, Dr. Guthrie S. Birkhead, Director, AIDS Institute, New 
York State Department of Health; Mr. Joe Davy, Policy Advocate, 
Columbus AIDS Task Force; Ms. Dorothy Mann, Board Member, AIDS 
Alliance for children, Youth & Families, out of Philadelphia; 
Mr. Jose R. Colon, Coordinator, Pacientes de SIDA Pro Politica 
Sana, from San Juan, Puerto Rico; and Mr. Eugene Jackson, 
Deputy Executive Director for Policy, National Association of 
People with AIDS.
    Again, ladies and gentlemen, thank you for being here. Your 
written statement is a part of the record. I will turn this 
timer on for 5 minutes. Hopefully you can stay around that 
period of time. We will not cut you off if there is a point 
that you are trying to make. We will start off with Ms. 
Heinrich.

 STATEMENTS OF JANET HEINRICH, ASSOCIATE DIRECTOR; ACCOMPANIED 
 BY JERRY FASTRUP, ASSISTANT DIRECTOR, U.S. GENERAL ACCOUNTING 
   OFFICE; JEANNE WHITE, NATIONAL SPOKESPERSON, AIDS ACTION; 
     THOMAS M. LIBERTI, CHIEF, BUREAU OF HIV/AIDS, FLORIDA 
   DEPARTMENT OF HEALTH; GUTHRIE S. BIRKHEAD, DIRECTOR, AIDS 
 INSTITUTE, NEW YORK STATE DEPARTMENT OF HEALTH; JOSEPH DAVY, 
POLICY ADVOCATE, COLUMBUS AIDS TASK FORCE; DOROTHY MANN, BOARD 
 MEMBER, AIDS ALLIANCE FOR CHILDREN, YOUTH & FAMILIES; JOSE F. 
 COLON, COORDINATOR, PACIENTES DE SIDA PRO POLITICA SANA; AND 
EUGENE JACKSON, DEPUTY EXECUTIVE DIRECTOR FOR POLICY, NATIONAL 
                ASSOCIATION OF PEOPLE WITH AIDS

    Ms. Heinrich. I am pleased to be here today, as you discuss 
ways to improve the distribution of Ryan White Act funds to 
States and localities. The program faces new challenges as the 
epidemic of HIV changes and new treatments extend the life 
expectancy of infected persons.
    At the request of the subcommittee, I will focus on three 
issues: the potential for distributing funds on the basis of 
counts of persons with HIV infection, rather than on counts of 
only persons diagnosed with AIDS; the differences in per capita 
funding for States within an eligible metropolitan area, which 
receive grants under both Title I and Title II of the act, as 
opposed to States which receive only Title II grants; and the 
current effect of the hold harmless provision, adopted in the 
1996 reauthorization.
    Seventy percent of Ryan White funds are distributed by 
formulas under Titles I and II of the act. Title I has provided 
$527 million in assistance in fiscal 2000 to a consortia of 
local service providers in eligible metropolitan areas.
    Title II provides funding for State agencies. In fiscal 
year 2000, $528 million was distributed for the AIDS Drug 
Assistance Program, and $266 million to provide health and 
support services. Almost all Title II funding growth has 
resulted from increases in the Drug Assistance Program.
    With the current rate of new infections remaining at 
approximately 40,000 cases per year, with AIDS deaths 
declining, and continuing progress and treatments for people 
who are HIV positive, resulting in delayed development of AIDS, 
it would be reasonable to distribute funds on the basis of the 
total number of persons living with HIV infection.
    We know that there are differences among the States in 
their policies related to HIV reporting. CDC officials indicate 
that they expect all States to be reporting newly diagnosed HIV 
cases by 2003, and that an additional one to 2 years, or one to 
3 years may be needed to get information on previously 
diagnosed HIV cases, entered into these new surveillance 
systems.
    The potential for incomplete reporting of older cases, at 
least initially, was clear when we compared the experience of 
States that had been reporting HIV cases, for different lengths 
of time. States with long reporting histories had many more HIV 
cases, compared with the number of AIDS cases, than did newly 
reporting States.
    In chart one, which we have here on the left, this is 
illustrated by comparing Texas and Colorado. Texas just began 
reporting HIV cases in 1999, but Colorado has been reporting 
since 1985. Reported HIV cases in Texas are about one-eighth 
the number of AIDS cases. In Colorado, the number of reported 
HIV cases exceeded reported AIDS cases by a factor of two to 
one.
    It seems prudent to delay any switch from using AIDS cases 
to HIV cases in the grant formulas, until we can be assured 
that the data is reasonably complete.
    Regarding the second issue that you asked us to address, 
States with eligible metropolitan areas receive considerably 
more funding, per case, than States without. The current 
formulas result in AIDS cases in designated metropolitan areas 
essentially being counted once in distributing Title I funding 
to a metropolitan area, and counted a second time, in 
distributing Title II funding to the States.
    The magnitude of the resulting funding differences is 
illustrated in this next chart. In fiscal year 2000, States 
that have no metropolitan area have received approximately 
$3,340 per case. States with less than 50 percent of their 
cases within a metropolitan area have received $3,600. States 
with more than 75 percent of their cases within a metropolitan 
area have received nearly 50 percent greater funding than 
States with no metropolitan area, or about $4,955 per case.
    Finally, I would like to discuss the hold harmless 
provision, added to Title I in the 1995 reauthorization. Before 
then, funding was distributed among the eligible metropolitan 
areas on the basis of the cumulative count of diagnosed AIDS 
cases. Many of the people diagnosed with the disease in the 
1980's had died, yet were still counted in the formula.
    The reauthorization changed this practice, shifting funding 
away from metropolitan areas with high proportions of deceased 
cases, and toward those with higher proportions of newly 
diagnosed cases. Under the transition rules adopted at the 
time, these metropolitan areas that would otherwise have lost 
funding were guaranteed a gradual decrease.
    Four metropolitan areas benefited from the hold harmless 
provision: Houston, Jersey City, New York, and San Francisco. 
But by 1999, San Francisco was the only metropolitan area that 
continued to benefit.
    In chart three, you can see that San Francisco receives 80 
percent more Title I funding than other metropolitan areas: 
approximately $2,360 per case, compared to $1,290, in fiscal 
year 2000. The benefit that San Francisco derives from this 
hold harmless provision has declined somewhat, but continues to 
be sizable.
    In conclusion, as the HIV epidemic continues to evolve, it 
becomes increasingly important that Federal resources match the 
distribution of persons who suffer from this dreaded disease. 
When data on all living HIV positive cases becomes available in 
the next few years, their inclusion in funding formulas would 
improve the ability of the Ryan White Act to effectively 
deliver funding for services to those in need.
    As we recommended in the past, improvements could also be 
achieved with this reauthorization, if double counting of 
metropolitan area cases was phased out.
    This concludes my statement, Mr. Chairman. I would be happy 
to answer any questions that you or members may have. We also 
are prepared to provide you additional information that you may 
need, as you continue your deliberations.
    [The prepared statement of Janet Heinrich follows:]
   Prepared Statement of Janet Heinrich, Associate Director, Health 
   Financing and Public Health Issues, Health, Education, and Human 
           Services, United States General Accounting Office
    Mr. Chairman and Members of the Subcommittee: I am pleased to be 
here today as you discuss ways to distribute Ryan White CARE Act funds 
to states and localities. As you know, the program is facing new 
challenges as the epidemic of the human immunodeficiency virus (HIV) 
changes and spreads to new segments of the American population. At the 
same time, new medicines and treatments have lengthened the life 
expectancy of infected persons. This, in turn, emphasizes the need to 
insure that program funding reflects the changing pattern of the 
epidemic.
    In fiscal year 2000, Ryan White grants have provided nearly $1.6 
billion in federal funding to assist state and local service providers 
in delivering health care and support services to individuals and 
families affected by HIV infection. Title I of the Act provides 
assistance to metropolitan areas most affected by the disease and Title 
II primarily provides funding for state agencies responsible for 
persons not served under Title I and for funding drug therapies. 
Although the Ryan White program serves individuals with HIV, funds are 
distributed on the basis of the number of individuals whose disease has 
progressed to acquired immunodeficiency syndrome (AIDS).
    At the request of the Subcommittee, I will focus on three issues:

 the potential for distributing funds on the basis of counts of 
        persons with HIV infection in each geographic area rather than 
        on counts of only persons whose disease has progressed to AIDS;
 the differences in funds for states with an eligible 
        metropolitan area (EMA), which receive grants under both title 
        I and title II of the Act, and states without an EMA, which 
        receive only title II grants;\1\ and
---------------------------------------------------------------------------
    \1\ Eligible metropolitan areas are urban areas with at least 
500,000 population and at least 2,000 living AIDS cases reported in the 
past five years.
---------------------------------------------------------------------------
 the current effect of the hold-harmless provision adopted in 
        the 1996 reauthorization, when the method of counting living 
        AIDS cases replaced the practice of counting cumulative AIDS 
        cases.
    To address these issues, we have analyzed data from the Centers for 
Disease Control and Prevention (CDC) and the Health Resources and 
Services Administration (HRSA) in the Department of Health and Human 
Services (HHS) and have developed computer models to calculate how 
funding would change under alternative formula scenarios.
    In brief, we found that only about 60 percent of the states include 
HIV cases that have not progressed to AIDS in their reports to CDC. To 
ensure that the formulas provide an equitable distribution, all states 
would need to report HIV cases. CDC officials told us that they expect 
all states to be reporting new HIV cases by 2003 and that an additional 
1 to 3 years may be needed to allow cases that existed before then to 
be entered into their reporting systems. However, the states' ability 
to completely identify past cases is not known.
    We also found substantial differences in funding between states 
with an EMA and those without one. For example, in fiscal year 2000 
states that had no eligible EMA received on average of $3,340 per 
person suffering from AIDS. In contrast, the states with more than 75 
percent of their AIDS cases in an EMA received nearly 50 percent more, 
averaging $4,954 per AIDS case. States such as California and New York 
with more than 90 percent of their cases in EMAs received $5,240 per 
case or almost 60 percent more than states without an EMA. GAO has in 
the past recommended changes to the Ryan White Funding Formulas that 
would result in more comparable funding across states.
    Finally, a hold-harmless provision was included in the 1996 
reauthorization to help with the transition of the EMAs that would 
receive less by using living AIDS rather than cumulative AIDS cases, 
which included both living and deceased cases. The transition has been 
very gradual and has had the effect of providing some EMAs with more 
funding on a per-person-with-AIDS basis than other similarly situated 
EMAs. Currently, only one EMA, San Francisco, continues to benefit from 
the hold-harmless provision, and it received substantially more aid 
than other similarly situated EMAs. For example, San Francisco received 
more than 80 percent greater title I funding per person with AIDS than 
other EMAs. Oakland, across the bay from San Francisco, and all other 
EMAs received $1,289 per person in fiscal year 2000 title I funding 
compared with San Francisco's $2,359 per person. San Francisco 
continues to benefit from the holdharmless provision because a large 
proportion of its cumulative AIDS cases were deceased under the formula 
used before fiscal year 1996 and because there have been smaller 
increases in new AIDS cases compared with other EMAs. GAO has in the 
past recommended changes to the Ryan White funding formulas that would 
enhance comparable funding across states.
                               BACKGROUND
    Since the first cases were identified in 1981, more than 700,000 
persons in the United States have been diagnosed with AIDS. Recent 
developments in medical and pharmacological therapies have improved the 
survival of persons with AIDS and have slowed the progression from HIV 
to AIDS. At the end of 1999, an estimated 300,000 persons were living 
with AIDS. It is also estimated that an additional 500,000 to 600,000 
people are infected with HIV that has not progressed to AIDS. The 
composition of the AIDS population has also changed over time, with 
minorities and women representing a larger portion of all cases.
    Federal efforts to provide health and support services involve a 
wide variety of programs and activities. In addition to Ryan White 
grants, federal funding is provided through CDC, the Department of 
Housing and Urban Development, Medicare, Medicaid, Social Security 
Disability Insurance, and the Supplemental Security Income program, 
among others.
    Seventy percent of Ryan White funds are distributed by formula 
under titles I and H of the act, while titles III and IV provide 
discretionary grants for a variety of support services. Title I has 
provided $527 million in assistance in fiscal year 2000 to consortia of 
local service providers in EMAs. To be eligible, a metropolitan area 
must have a population of at least 500,000 and must have had a 
cumulative total of more than 2,000 reported AIDS cases in the past 5 
years. There were 16 EMAs when the program began in 1991, and the 
number has grown to 51 today.
    Title I funding has increased at an average annual rate of 24 
percent since 1991. (See fig. 1.) Half of these funds is distributed by 
formula on the basis of estimated living AIDS cases in each EMA. HRSA 
distributes the remainder of title I funds among EMAs on a 
discretionary basis in response to proposals EMAs submit. Historically, 
the distribution of discretionary grants has generally mirrored the 
pattern of the formula grants.
    Title II provides funding for state agencies. In fiscal year 2000, 
96 percent of funds was distributed by formula, $528 million for the 
AIDS Drug Assistance Program (ADAPS) and $266 million to provide health 
and support services to persons not living in an EMA and for other 
activities. Title II funds have grown at an average annual rate of 29 
percent.
    Almost all this growth has resulted from increased funding in the 
ADAPS program. (See fig. 2.)
    In our previous report on the CARE Act funding formulas, we had 
recommended to the Congress that the funding formulas be modified so 
that

 comparable medical services funding be made available 
        regardless of where people with AIDS live and
 an indicator be added to the formulas that reflect relative 
        differences across states and EMAs in the cost of serving 
        people with AIDS.\2\
---------------------------------------------------------------------------
    \2\ Ryan White CARE Act 0F 1990: Opportunities to Enhance Funding 
Equity (GAO/HEHS-96-26, Nov. 13, 1996).
---------------------------------------------------------------------------
    As I will discuss in more detail, these recommendations continue to 
be applicable today.
        STATE HIV REPORTING IS IMPROVING BUT IS STILL INCOMPLETE
    Because the Ryan White program serves persons who have been 
diagnosed with HIV that has not progressed to AIDS as well as those for 
whom it has, it would be reasonable to distribute funds on the basis of 
the total number persons living with HIV. However, while all states 
report AIDS cases, many do not report the number of persons with HIV 
that has not progressed to AIDS. Therefore, for purposes of 
distributing formula funds equitably, the total number of AIDS cases 
continues to be the best available indicator of need.
    CDC indicates that 21 states, with 58 percent of all AIDS cases, do 
not report HIV cases, report only some cases, or are awaiting CDC 
approval of their reporting systems. Most notable among these are New 
York and California which together have 31 percent of all AIDS cases. 
New York's legislature recently authorized HIV reporting to CDC but has 
not yet begun implementation, and California has yet to authorize HIV 
reporting. Table 1 lists the states with CDC-approved reporting systems 
and those not yet approved.

             Table 1: States and Their HIV Reporting Status
------------------------------------------------------------------------
               CDC-approved                         Not approved
------------------------------------------------------------------------
Alabama, Alaska, Arizona, Arkansas,         California, Connecticut,
 Colorado, Florida, Idaho, Indiana, Iowa,    Delaware, District of
 Kansas, Louisiana, Michigan, Minnesota,     Columbia, Georgia, Guam,
 Mississippi, Missouri, Nebraska, Nevada,    Hawaii, Illinois, Kentucky,
 New Jersey, New Mexico, North Carolina,     Maine, Maryland,
 North Dakota, Ohio, Oklahoma, South         Massachusetts, Montana, New
 Carolina, South Dakota, Tennessee, Texas,   Hampshire, New York,
 Utah, Virgin Islands, Virginia, West        Oregon, Pennsylvania,
 Virginia, Wisconsin, Wyoming.               Puerto Rico, Rhode Island,
                                             Vermont, Washington
------------------------------------------------------------------------

    CDC officials told us that they expect all states to be reporting 
newly diagnosed HIV cases by 2003 and that an additional 1 to 3 years 
may be needed to get all HIV cases entered into a new reporting system. 
The potential for lags in reporting the older cases was clear when we 
compared the experience of states that had been reporting HIV cases for 
different lengths of time. States with long reporting histories had 
many more HIV cases compared with their number of AIDS cases than did 
newly reporting states. This is illustrated by comparing Texas and 
Colorado. Texas just began reporting HIV cases in 1999 but Colorado has 
been reporting since 1985. Reported HIV cases in Texas are about one-
eighth the number of AIDS cases. In Colorado, with a much longer 
reporting history, the number of reported HIV cases exceeds reported 
AIDS cases by a factor of about 2 to 1. (See fig. 3.) The extent to 
which states can identify preexisting cases once they begin HIV 
reporting is not known. Some of the discrepancy, illustrated by the 
Colorado and Texas comparison, could be reduced as Texas identifies 
more preexisting cases. States that begin reporting more recently may 
continue for some time into the future to have a larger proportion of 
previously diagnosed but not reported cases.
    The cost of serving persons who have HIV disease can vary 
substantially, depending on the stage of their disease. Persons whose 
disease has progressed to AIDS often require more expensive drug 
therapies and more intensive care. If HIV data were integrated into the 
funding formulas, greater weight could be assigned to persons whose 
need for therapy are in the more expensive stages of the disease. Doing 
so would better ensure that the distribution of funds is commensurate 
with the cost of care. Information on such cost differences and how to 
estimate the number of persons in different stages of the disease would 
need to be addressed before this type of adjustment could be 
incorporated.
    STATES WITH NO EMA ARE DISADVANTAGED UNDER THE CURRENT FORMULA 
                               STRUCTURE
    Whether states have an EMA or not, they have the same service 
delivery responsibilities: to provide health care and support services 
to persons who have HIV disease. However, states with EMAs receive more 
funding per case because EMAAIDS cases are counted once in distributing 
title I funding and counted a second time in distributing title II 
funding. States without an EMA receive no funding under the title I 
distribution, and, thus, when total Ryan White resources are 
considered, some states receive considerably less than others per case. 
The magnitude of these funding differences is illustrated in figure 4. 
In fiscal year 2000, states that have no EMA have received 
approximately $3,340 per case. States with less than 50 percent of 
their cases within an EMA have received $3,600 per case. States with 
more than 75 percent of their cases within an EMA have received nearly 
50 percent greater funding than states with no EMA, or $4,954 per case.
    A comparison of Colorado and Indiana provides a clear example of 
these funding disparities because both states have roughly 2,300 living 
AIDS cases. Colorado has an EMA because most of its cases are 
concentrated in the Denver metropolitan area. Indiana's cases are more 
dispersed. As a consequence, Indiana does not have an EMA and receives 
no title I funding. The effect is that Indiana receives $3.3 million 
less to help it serve the same number of cases as Colorado.
      THE HOLD-HARMLESS PROVISION CURRENTLY BENEFITS A SINGLE EMA
    Finally, I would like to discuss the hold-harmless provision added 
to title I in the 1996 reauthorization. Before the 1996 
reauthorization, funding was distributed among EMAs on the basis of the 
cumulative count of diagnosed AIDS cases. By 1996, many persons 
diagnosed with the disease in the 1980s had died, yet they were still 
counted for purposes of distributing funding to EMAs. The areas of the 
country with the longest experience with the disease had the most 
deceased cases and benefited the most from using cumulative case counts 
in the formula.
    The 1996 Ryan White reauthorization changed this practice by 
replacing cumulative case counts with estimates of living AIDS cases. 
The effect of the change was to shift funding away from EMAs with high 
proportions of deceased cases and toward those with higher proportions 
of newly diagnosed cases.
    Because these shifts would have been quite large, a hold-harmless 
provision was added so that the EMAs that were affected would gradually 
make a transition to an allocation based on living AIDS cases. Under 
the transition rules adopted at that time, EMAs that would otherwise 
have lost funding were guaranteed to receive in fiscal year 1996 the 
same funding they received in 1995, 99 percent in 1997, 98 percent in 
1998, 96.5 percent in 1999, and 95 percent in 2000.
    HRSA records show that four EMAs benefited from the hold-harmless 
provision in 1996: Houston, Jersey City, New York, and San Francisco. 
By 1999, San Francisco was the only EMA that continued to benefit from 
the provision for two reasons. First, it had benefited the most from 
using cumulative rather than live cases before fiscal year 1996 and 
second, it has had smaller increases in newly reported cases than other 
EMAs. It received 80 percent more title I funding than other EMAs: 
$2,360 per case compared with $1,290 in fiscal year 2000 (see fig. 5).
    The high grant that San Francisco derives from the hold-harmless 
provision has declined somewhat but continues to be sizable. Figure 6 
shows that in fiscal year 1996 San Francisco's title I grant was more 
than twice the grant of other EMAs. In fiscal year 2000, it has been 
reduced to roughly 80 percent.
    As I noted earlier, roughly half of title I funding is distributed 
by formula, and half is distributed on a discretionary basis. 
Discretionary funding is awarded on the basis of the quality of 
proposals submitted to HRSA. The discretionary grants awarded to San 
Francisco appear to reflect the hold-harmless provision as well as 
those in need. For example, for fiscal year 2000 San Francisco's 
discretionary award per AIDS case was roughly twice as large as the 
average for the other EMAs.
    In conclusion, Mr. Chairman, the HIV-AIDS epidemic continues to 
evolve and the location of the disease continues to change as well. As 
a consequence, it becomes increasingly important that federal resources 
match the distribution of persons who suffer from this dread disease. 
When data on all living HIV cases become available in the next few 
years, their inclusion in funding formulas will improve the ability of 
the Ryan White CARE Act to effectively deliver funding to persons in 
need. However, improvements in matching funding to persons in need of 
health and support services could also be achieved with this 
reauthorization if, as we have recommend, the double counting of EMA 
AIDS cases was phased out. We would be happy to work with subcommittee 
staff to achieve this.
    Mr. Chairman, that concludes my prepared statement. I would be 
happy to answer any questions that you or other members of the 
Subcommittee may have.
                    GAO CONTACTS AND ACKNOWLEDGMENTS
    For future contacts regarding this testimony, please call William 
J. Scanlon at (202) 512-7118 or Jerry Fastrup at (202) 512-7211. Greg 
Dybalski and Michael Williams also made important contributions to this 
statement.
[GRAPHIC] [TIFF OMITTED] T5914.012

[GRAPHIC] [TIFF OMITTED] T5914.013

    Mr. Bilirakis. Thank you very much, Ms. Heinrich.
    Now the very courage Jeanne White, the National 
Spokesperson for AIDS Action. Jeanne, please proceed.

                    STATEMENT OF JEANNE WHITE

    Ms. White. Well, thank you, Chairman Bilirakis and Dr. 
Coburn and members, for this privilege to testify before this 
distinguished committee.
    My name is Jeanne White. I am the mother of two children, 
my daughter Andrea and my late son, Ryan, after whom the Ryan 
White CARE Act is named. I come here today, first as a parent, 
and second as a spokesperson for AIDS Action Council, the 
national voice on AIDS.
    Two weeks ago, I had the honor to meet with Chairman 
Bilirakis, Dr. Coburn, Representative Waxman, Representative 
Burr, Representative Cox, and Representative Greenwood. The 
kindness and concern that each member expressed reassured me 
that Ryan's legacy has not been forgotten.
    Accompanying me on my visits last week were three people, 
who participate in AIDS action's Pedro Samora Fellowship 
Program. Rachael French is attending Duquesne University in 
Pittsburgh. Margarita Castafielda will be attending the School 
of Public Health at UCLA. Edward Hu will be attending Boston 
University's Medical School.
    Ryan would be as proud of these future leaders as I am for 
their devotion to this cause. These young people are part of 
the generation who will lead the charge against this ongoing 
epidemic. For this next generation, it is essential that we 
reauthorize the Ryan White CARE Act.
    I have dedicated myself to traveling the country and 
continuing the work that Ryan began. What I have seen in these 
travels is that the face of AIDS is changing. AIDS is the 
leading cause of death among African Americans between the ages 
of 25 to 44, and the second leading cause of death among 
Latinos in the same age group.
    The numbers are overwhelming, but the faces are real. When 
I see these faces, I am reminded that I am a mother; a mother 
who lost her son to AIDS, and so many of our own sons and 
daughters have died from AIDS.
    Ryan would want us to help those who are alive today. He 
would want us to provide the treatments that are now available 
through the CARE Act. Ryan helped me and so many others 
understand that we must do everything we can to help each and 
every person who has HIV and AIDS.
    Ryan was a mover and he was a shaker, believe me. He was 
the first national voice on AIDS. He was strong, but he was 
still a boy. He was my boy.
    As a mother, I just wanted to reach out and make everything 
better. I tried, but as his health deteriorated, it became 
clear that a mother's voice and a mother's love would not save 
him from this disease.
    In 1984, the doctors told me Ryan had only 3 months to 
live. He lived for five and-a-half years with AIDS. Believe me, 
I am very grateful for every moment of the 18 years I spent 
with my son.
    Ryan did not choose to lead a public life. But he wanted 
people to understand the disease. Let me quote from Ryan's 
testimony before President Bush's Commission on AIDS.
    ``Because of the lack of understanding on AIDS, 
discrimination, fear, panic, and lies surrounded me. I was 
labeled a troublemaker, my mom, an unfit mother, and I was not 
welcome anywhere. People would get up and leave so they would 
not have to sit anywhere near me. Even at church, people would 
not shake my hand.''
    Thank God, things are changing. But even in this bright era 
of hope, it seems like the darkest days are still among us. 
Unfortunately, the new faces of AIDS still feel pain, fear, and 
discrimination. I witnessed firsthand the ravages of this 
disease. I know the terrible toll HIV and AIDS has taken on 
moms, dads, brothers, sisters, grandmas and grandpas, aunts and 
uncles, and loved ones.
    The year 1990 was a very difficult year for my family. As 
my son fought for his life, across the Nation, families like 
mine were hoping against hope for a miracle to end this 
dreadful disease.
    When Ryan died, all my hopes of Ryan beating the odds, 
finding a cure, and praying for miracles were gone. I was very 
reluctant to continue my son's advocacy, because I felt like 
people wanted to hear Ryan, and not me. But I had a powerful 
support team that was not going to let me be silent.
    I then thought of something Ryan had said that gave me the 
strength to come to Capitol Hill. He said, ``Mom, I am not 
afraid of dying. I know I am going to a better place. It is how 
you live your life that counts.''
    Well, as you know, I came to Washington in 1990, and worked 
with Congressional leaders from both parties to continue Ryan's 
legacy, and pass the original CARE Act. I am so proud and 
honored that Congress named this bill after my son, Ryan.
    While this legislation could never replace my son or the 
emptiness that I still feel today, I am happy that a program 
named after my son has benefited thousands of men and women and 
children and families living with HIV and AIDS.
    The CARE Act makes real Ryan's dream of compassion for 
people living with this disease. It provides care, drugs, and 
services to those who face the same struggles as my late son, 
Ryan. Ryan never understood those who wanted to deny care to 
people with AIDS. Now the CARE Act ensures that more people 
have access to care and services.
    This disease affects all kinds of people: black, white, 
brown, young, old, rich, poor, Republican, and Democrat. We 
must make sure that this program stays strong, so that people 
living with HIV and AIDS can live as long as possible.
    As a mother dedicated to seeing that our sons and daughters 
with HIV are taken care of, I urge you to reauthorize the Ryan 
White CARE Act. It is what Ryan would also want us to do.
    Thanks.
    [The prepared statement of Jeanne White follows:]
 Prepared Statement of Jeanne White, National Spokesperson, AIDS Action
    Thank you Chairman Bilirakis, ranking member Representative Brown, 
Dr. Coburn, Representative Waxman and members of the committee for the 
privilege to testify before this distinguished committee. My name is 
Jeanne White, and I am the mother of two children, my daughter Andrea 
and my late son Ryan, after whom the Ryan White CARE Act is named. I 
come here today as a spokesperson for AIDS Action Council, the national 
voice on AIDS, and as a parent.
    Two weeks ago I had the honor to meet with Chairman Bilirakis, Dr. 
Coburn, Representative Waxman, Representative Cox, Representative 
Greenwood, and Representative Burr. The kindness and concern that each 
member expressed reassured me that Ryan's legacy has not been 
forgotten.
    Accompanying me on my visits last week were three young people who 
participate in AIDS Action's Pedro Zamora fellowship program. Rachael 
French is attending Duquesne University in Pittsburgh, Margarita 
Castaneda will be attending the School of Public Health at UCLA and 
Edward Hu will be attending Boston University's Medical School. Ryan 
would be as proud of these future leaders as I am for their devotion to 
this cause. These young people are part of a generation who will lead 
the charge against this ongoing epidemic. For this next generation it 
is essential that we reauthorize the CARE Act.
    I come here as a mother, just a mom from Cicero, Indiana, deep in 
America's heartland, who has witnessed first-hand the ravages of this 
disease and the fear and pain it has levied against individuals and 
communities. As you know, the demographics of HIV are changing and it 
is more important than ever that we provide the services that these 
communities need. On behalf of men, women, children and families living 
with HIV/AIDS from East and West, North and South, I ask you to 
reauthorize the Ryan White CARE Act.
    I remember walking the halls of Congress during the passage of the 
original CARE Act. Back then, I never would have imagined that this 
legislation would help so many people like my son, giving them the 
strength to live another day. I also never would have imagined how the 
need for this invaluable program would grow. That is why we must 
reauthorize the CARE Act. We must ``go for it'', as Ryan would often 
say to me as he and I were fighting our battle against HIV.
    In August 1990, just four months after Ryan's death, the United 
States Congress passed the CARE Act to provide services and treatment 
for the thousands of Americans living with HIV disease. While this 
legislation could never replace my Ryan or the emptiness I still feel 
today from that loss, I am happy that a program named after my son has 
benefited hundreds of thousands of men, women and children living with 
HIV disease.
    Since its enactment in 1990 and its reauthorization in 1996, the 
CARE Act has helped deliver medical and social services that give many 
people something they never had before in the course of HIV disease: 
access to comprehensive and compassionate care. The CARE Act is largely 
responsible for people with HIV/AIDS living longer, more productive 
lives and has given communities all over this country the ability to 
design care and treatment services tailored to their own needs. The Act 
has cast a wide safety net that helps people with HIV disease live life 
to the fullest.
    Best of all, the Ryan White care system and the programs that 
enrich it continue to teach us all about what works in the care and 
treatment of our nation's most vulnerable citizens. It is truly a model 
of care that can be adapted to meet the needs of the hundreds of 
thousands of individuals living with other serious and life-threatening 
diseases.
    Members of the committee, the CARE Act is as strong as my son Ryan 
was. That's good, because we need the CARE Act now more than ever. 
We've come a long way since Ryan's death, but we still have so far to 
go. More people than ever are living with HIV disease and need the care 
and support the CARE Act provides.
    Thankfully, in recent years the development of new therapies has 
resulted in a dramatic reduction of the AIDS death rate. If Ryan had 
lived just a few more years he, too, might have benefited from these 
same treatments. But with these new hope-giving and life-extending 
therapies has come an added pressure on the hundreds of health service 
providers who care for individuals living with HIV disease. Many of 
these providers have experienced a dramatic increase in the number of 
new patients. The remarkable fact that people with AIDS are living 
longer has contributed to an increased demand on the HIV/AIDS care 
safety net.
    This intricate, vital care system, built to ensure comprehensive 
health care and services for people with AIDS who had nowhere else to 
turn, is struggling to keep pace with new and ongoing demands.
    The challenge of serving every individual with HIV disease who has 
nowhere else to turn is understandable. Given the success of the new 
treatments when coupled with the critical support services that make 
success a reality, the CARE Act brings us closer to the goal of 
ensuring a standard of care set out by the Public Health Service 
treatment guidelines for HIV and opportunistic infections. This is a 
call for early and aggressive treatment.
    The number of individuals in need of the CARE Act bears out the 
urgency for swift reauthorization. In 1990, when the CARE Act was 
passed, there were 155,619 AIDS cases. In 1996, during its 
reauthorization there were 481,234 cases. And, in 1999, at the turn of 
the century, America has recorded 733,374 cases of AIDS.
    Mr. Chairman and members of the committee, ever since Ryan's death, 
I have dedicated myself to traveling the country and continuing the 
work of AIDS awareness that Ryan began. What I have seen is that the 
face of AIDS is changing.
    For example, in 1998, tens of thousands of people received primary 
care and support services under the CARE Act. Sixty percent of those 
were people of color. Indeed, AIDS is the leading cause of death among 
African Americans between the ages of 25-44 and the second leading 
cause of death among Latinos in the same age group. People of color 
make up 55% of all reported AIDS cases, 82% of all children with AIDS, 
50% of all cases reported among men, and 77% of all cases among women.
    Indeed, more women than ever in the U.S. have AIDS, and the rate is 
increasing. In just over 10 years, the proportion of all AIDS cases 
reported among adult and adolescent women more than tripled, from 7% in 
1985 to 23% in 1998, according to the Centers for Disease Control and 
Prevention.
    I want to pay particular attention to the threat that HIV poses to 
the future of our young people, the very same young people who staff 
your offices and help you to write and pass legislation. In much the 
same way that the young people on your staffs make Capitol Hill run, 
Ryan was my very own mover and shaker, serving as a trailblazing 
national voice on HIV issues, speaking for his generation.
    Ryan's generation listened to him. A 1997 Wall Street Journal 
survey found that young Americans--people aged 18 to 29--identify AIDS 
as the defining event for their generation. Yet sadly, a majority of 
young people believe that AIDS is over. As a mother dedicated to seeing 
that no more of our sons or daughters are lost to HIV, I find it 
heartbreaking to think that there are 40,000 new infections every year 
in the U.S.--half of which are among young people, as reported by the 
Centers for Disease Control and Prevention (CDC).
    In fact, I am pleased to report that preventing HIV infection is 
one of AIDS Action Council's top priorities. It is far less expensive 
to prevent someone from becoming infected in the first place than to 
care for that person once they are infected. Our nation must increase 
spending on HIV prevention programs at the Centers for Disease Control 
and Prevention. As you may know, the CDC has an ambitious goal to 
reduce the cumulative number of new HIV infections in half by the year 
2004. Congress should support the prevention efforts underway at the 
CDC and also reauthorize the CARE Act. I don't know what people would 
do without the CARE Act. Individuals and families need the CARE Act, 
and providers need it to continue treating people affected by HIV 
disease.
    Each thread in the CARE Act's safety net is inter-woven in such a 
way so that the specific needs of individuals living with HIV disease 
are met. The Ryan White CARE Act is there to ensure that our nation can 
continue to meet service needs and successfully support access to life 
saving therapies.
    The CARE Act is based on the recognition that medications alone are 
not enough to successfully fight AIDS. The structure of the CARE Act 
has worked effectively to: dramatically improve the quality of life for 
people living with HIV disease and their families; reduce the use of 
costly inpatient care; and increase access to care for underserved 
populations, including people of color. This coordinated and 
comprehensive approach makes the CARE Act a cost-effective and 
efficient investment--one that must be continued.
    I want to thank the Congress for recognizing that the nation needed 
a great leap of scale in order to care for individuals living with HIV/
AIDS and putting in place this efficient statute. The CARE Act 
continues to show that its strength is deep and its success is wide. 
From the very beginning, the framers of the Act agreed that for the 
legislation to adjust to HIV, its structure had to be as resilient as 
the virus itself. To fortify its structure, the Act has at its core 
four pillars of strength.
    First, the Act gives cities and states autonomy to decide how best 
to care for their citizens. Thanks to local decision-making, public 
health officials, community-based organizations, and individuals living 
with HIV/AIDS have been allowed to come together to tailor the delivery 
of services to best meet their needs. Local control has resulted in 
cooperative efforts from various levels of government to develop 
dynamic and effective strategies in response to the AIDS epidemic.
    Second, individuals who receive care through the CARE Act can 
access a comprehensive range of services designed to maximize the 
availability and effectiveness of life-saving therapies. The spectrum 
of medical and supportive services included in the CARE Act is vital to 
providing better access to quality care.
    Third, the CARE Act is a foundation for fostering better 
collaboration between local, state, and federal agencies in order to 
improve access to care for people living with HIV.
    Fourth, the CARE Act's flexibility has provided incentives to 
develop innovative approaches to treating HIV disease while improving 
access to care.
    Thanks to the enduring foundation of the CARE Act, providers in 
every state of the nation, and in every community, are delivering care 
and treatment and recording success. Your constituents are weaving the 
threads that make up the HIV/AIDS safety net. This foundation has been 
tested. Time and time again, it's been proven strong. However, on the 
tenth anniversary of the CARE Act, we must prepare for a new century.
    I believe that we can build upon the greatness of the Ryan White 
CARE Act. We must look forward, modernize the Act and ensure that it 
can meet the demands and challenges facing the HIV/AIDS communities.
    One of my greatest challenges was to make sure that Ryan was 
allowed to attend school and get his education. During that battle, I 
learned a few lessons about the importance of tolerance, the power of 
information and the value of persistence. In the 10 years since the 
CARE Act was passed, we've learned important lessons about how best to 
care for people with HIV disease. Well, practice makes perfect; the Act 
can only get better through our well-informed improvements.
    One important lesson we've learned in treating individuals with HIV 
disease is that no two people or two communities are the same. This 
means that the CARE Act must continue to respond to these differences.
    First for example, we should make sure that smaller communities 
experiencing the impact of the HIV epidemic also have the necessary 
resources for care and treatment. This includes the ability to make 
sound decisions through local control and greater equity in funding 
distributions. The experts--service organizations, community-based 
organizations and individuals infected and affected by the disease must 
be involved in defining what the needs are and how best to meet them, 
always with accountability built in.
    Equally important, we must recognize that just because HIV has 
touched an ever-growing number of lives in smaller communities, this 
does not in any way lessen the force with which HIV continues to strike 
our largest cities. That's why as we prepare the Act for the 21st 
century, any changes we make to the Act must not compromise existing 
infrastructures and/or service delivery systems in metropolitan areas.
    Second, much in the same way that HIV has become a part of 
communities large and small in every region of the country, it has 
become a part of every culture and population in our nation. HIV is a 
mirror for our nation's diversity. We must do all that we can to ensure 
that these populations receive appropriate care with all due speed.
    We've come a long way since the beginning of the epidemic in terms 
of what we know about HIV and how to treat it. And, yet, some of the 
misunderstanding and discrimination that Ryan fought so hard against 
still persists today.
    That is why access to care and services for underserved communities 
must remain a priority across all titles at the same time that we 
continue to plan for emerging needs. Towards this end, incentives and 
technical assistance should be extended to ensure that CARE Act 
programs are ready to meet the needs of targeted populations.
    Third, just as we must provide incentives to community-based health 
providers to treat underserved populations, we must do more to 
encourage localities to contribute more funding to HIV care and 
treatment. At the point when science is bringing us the hope of new and 
vastly improved treatment options, it is unacceptable that there are 
individuals in need of HIV-related medications, despite the presence of 
the AIDS Drug Assistance Program. We must reward states and cities that 
invest resources in response to the needs of their communities and 
stimulate greater participation from more reluctant local and state 
governments.
    Fourth, the CARE Act has also taught us that the continuum of care 
under the statute includes dental care and training of both dental 
residents and medical professionals in the treatment of individuals 
with HIV. Now, we must build upon the success of the Dental 
Reimbursement Program and expand it to allow programs in non-university 
settings the opportunity to participate, and we should prioritize 
funding to those programs with strong linkages to community-based 
programs.
    Fifth, as the CARE Act enters its second decade, we must find 
better ways of documenting the quality care it provides and use this 
information to fine tune its programs. Currently the HIV/AIDS Bureau 
(HAB) at the Health Resources and Services Administration (HRSA) is 
doing just that. The HAB needs the resources to generate needed data 
collection and dissemination, analysis and evaluation so that we can 
pinpoint the most effective use of CARE Act funding. We should enhance 
the accountability built into the Act, so that better planning for 
resource distribution can be done.
    If the United States is to continue to meet the challenges 
presented by this complex epidemic, it is essential that we support 
innovative and flexible solutions to solve our nation's AIDS epidemic. 
As the epidemic continues to grow and expand into more disenfranchised 
communities, the need for CARE Act services has become even more 
critical to the health and well being of individuals who have to deal 
with multiple barriers to accessing health care.
    The Ryan White CARE Act, itself, was created in this spirit. This 
important piece of legislation is scheduled to expire on September 30, 
2000. It is an essential component in our nation's fight against HIV 
and AIDS and must be reauthorized.
    I am grateful for Congress' continued bipartisan support of the 
Ryan White CARE Act over the past decade. The result of these efforts 
is that thousands of people living with HIV/AIDS have been able to lead 
productive lives because of the care, treatment and services provided 
by the CARE Act. Throughout the United States, the CARE Act continues 
to make a tremendous difference in the lives of people living with HIV 
disease.
    The success of this legislation is a lasting tribute to my son, and 
it comforts me to know that so many people are being helped through the 
services and treatments provided in Ryan's name. I am thankful to have 
shared 18 precious years with my son and I am thankful that Ryan's 
legacy lives on through the CARE Act. In 2000, we must reauthorize the 
Ryan White CARE Act to help those living with HIV/AIDS. It is what Ryan 
would want us to do.
    Mr. Chairman and members of the committee, thank you once again for 
the opportunity to testify today and I welcome any questions that you 
might have.

    Mr. Bilirakis. Thank you very much, Jeanne.
    Mr. Tom Liberti, again, welcome, from very hot Florida to 
hot Washington.

                 STATEMENT OF THOMAS M. LIBERTI

    Mr. Liberti. Thank you, Mr. Chairman.
    Good afternoon Mr. Chairman and distinguished members of 
the House Subcommittee on Health and Environment. My name is 
Tom Liberti. I am the Chief of the Florida Department of 
Health, Bureau of HIV/AIDS.
    The Bureau administers all of the HIV/AIDS prevention 
programs in Florida, including early intervention, patient 
care, and surveillance in our State.
    I am pleased to have the opportunity to speak to you today 
regarding HIV/AIDS in Florida, and also the importance of the 
Ryan White CARE Act in helping us provide comprehensive and 
compassionate services to persons living with HIV and AIDS, and 
the Coburn-Waxman reauthorization legislation.
    I would like to take this personal opportunity, on behalf 
of the citizens of Florida, to thank each of you, and 
especially Mr. Chairman, for your leadership in addressing HIV 
and AIDS prevention and care.
    Mr. Chairman, Florida has been hit very hard by the AIDS 
epidemic. HIV infections have penetrated nearly every 
metropolitan and rural community in our State. Although Florida 
has only 5.5 percent of the U.S. population, we have 
approximately 10.5 percent of the 725,000 AIDS cases reported 
in the United States through 1999.
    As mentioned, minority populations in Florida, and 
particularly blacks, have been disproportionately affected by 
HIV and AIDS. The numbers of AIDS cases and HIV cases and their 
ranks have been increasing at an alarming rate.
    Of the 78,000 reported AIDS cases, 46 percent are black, 39 
percent are white, and 15 percent are Hispanics. Males account 
for 78 percent of the cases, and females account for 22 
percent. I have included a full report with my comments.
    How important is the Ryan White CARE Act? The Ryan White 
CARE Act has made an enormous difference in the lives of 
Florida's men, women, and children who are infected and 
affected with HIV/AIDS. For many living with AIDS in Florida, 
these services are their only source of care and treatment.
    In 2000, $16 million of Florida's $84 million will be 
allocated to 14 HIV consortia throughout the State for basic 
support services and primary care.
    Florida has worked hard to provide a continuum of care for 
all residents infected with HIV and to provide equal access to 
the standard of HIV care. We are also committed to avoiding 
duplication or overlap of services and obtaining services and 
products of the highest quality at the lowest possible cost. 
Through the coordination of CARE Act grantees, State and local 
partnerships have been established at every level.
    Florida's AIDS Drug Assistance Program has experienced 
tremendous growth, thanks to the Congress, over the last few 
years, and we expect to serve over 12,000 HIV infected 
individuals through ADAP during the upcoming fiscal year.
    For 2000, the Florida ADAP is being funded with a 
combination of Ryan White Title II and State general revenue 
funds, for a total of $70 million.
    At this time, the program provides 54 drugs on the 
formulary. This, of course, includes access to all 
antiretrovirals, all protease inhibitors, and all of the major 
drugs to fight opportunistic infections and many others.
    The Ryan White CARE Act is responsible for the expansion of 
this critical program and the subsequent decline in HIV-related 
deaths in Florida. In 1995, there were 4,336 people who died of 
AIDS in Florida. I am happy to say, in 1998, there were only 
1,547; but we can do better.
    Florida strongly supports the Ryan White reauthorization. 
The approaches articulated in the Ryan White reauthorization 
bill reflect many of the new dynamics of the HIV epidemic. The 
number of people living with HIV disease is growing, and the 
diversity of the epidemic is broadening. This bill will give 
States the flexibility to tailor their response to the unique 
needs of the changing epidemic.
    We strongly support the transition which will promote more 
effective targeting and distribution of care resources. 
Confidential name reporting of HIV infection was implemented in 
Florida in July, 1997. Florida's confidential HIV infection 
reporting system has identified 16,754 newly reported HIV cases 
through May of 2000.
    HIV infection reporting has clearly shown a significant 
increase in HIV infection in Florida's minority communities. 
While blacks comprise 13 percent of Florida's population, they 
account for 60 percent of the most recently reported HIV cases.
    As a result of this alarming trend, numerous minority 
initiatives have been implemented, including the most recently 
launching of a statewide media campaign and the creation of a 
minority HIV/AIDS Task Force, to name a few.
    Very quickly, we also support the use of Title II funding 
for early intervention activities, including activities that 
assist in case finding and linkages to care, that will 
strengthen Florida's efforts to fight the spread of this 
disease.
    Through early intervention activities, including innovative 
counseling and testing, such as the use of oral fluid testing, 
we will be able to identify more individuals who are HIV 
infected and unaware of their status.
    We support counseling, and the provisions for partner 
counseling and referral activities are effective interventions 
for reaching individuals who are at high risk for HIV infection 
and unaware of their risk.
    Mr. Bilirakis. Please summarize, Tom.
    Mr. Liberti. Since the Ryan White CARE Act was passed in 
the early 1990's, the CARE Act has served as the most important 
program for HIV/AIDS care and treatment in our State.
    We would like to thank you once again for the opportunity 
to provide testimony on the impact of HIV/AIDS in Florida, and 
to commend the members of this committee for their hard work, 
support, and leadership in this critical area.
    I am available for questions and comments, as you work on 
this legislation.
    [The prepared statement of Thomas M. Liberti follows:]
  Prepared Statement of Thomas M. Liberti, Chief, Bureau of HIV/AIDS, 
                      Florida Department of Health
    Good Morning, Mr. Chairman and distinguished Members of the House 
Subcommittee on Health and Environment. My name is Tom Liberti. I am 
Chief of the Florida Department of Health Bureau of HIV/AIDS. The 
Bureau of HIV/AIDS administers all HIV/AIDS prevention, early 
intervention, patient care and surveillance activities in the state. I 
am pleased to have the opportunity to speak to you today regarding HIV/
AIDS in Florida, the importance of the Ryan White CARE Act in helping 
us provide comprehensive and compassionate services to persons living 
with HIV/AIDS and the Coburn-Waxman reauthorization legislation, HR 
4807. I would also like to take this opportunity, on behalf of the 
citizens of Florida, to thank each of you for your leadership in 
addressing HIV/AIDS prevention and patient care.
    I would like to begin my testimony by providing a brief overview of 
the HIV epidemic in our state and the enormous impact of the Ryan White 
CARE Act in our state. I then have six major points I would like to 
cover in support of the Ryan White Reauthorization.
                  OVERVIEW OF THE EPIDEMIC IN FLORIDA
    Florida has been hit very hard by the AIDS epidemic. HIV infections 
have penetrated nearly every metropolitan and rural community in our 
state. Although Florida has only 5.5 percent of the U.S. population, we 
have 10.2 percent of the 724,656 cumulative AIDS cases reported in the 
U.S. through 1999. Florida's population of more than 15 million people 
is racially and ethnically diverse: 73 percent are white, 13 percent 
are black, 12 percent are Hispanic and 1percent are Asian/Pacific 
Islander and less than 1 percent are American Indian. Minority 
populations in Florida, particularly blacks, have been 
disproportionately affected by HIV/AIDS, and the numbers of HIV/AIDS 
cases in their ranks have been increasing at an alarming rate. Of the 
78,000 reported AIDS cases, 46 percent are among blacks, 39 percent are 
whites and 15 percent are Hispanics. Males account for 78 percent of 
the reported AIDS cases and females account for 22 percent. In the 
attachment, you will see additional information regarding HIV/AIDS 
demographics in Florida.
               THE IMPORTANCE OF THE RYAN WHITE CARE ACT
    The Ryan White CARE Act has made an enormous difference in the 
lives of Florida's men, women and children who are infected and 
affected with HIV/AIDS. The Ryan White CARE Act has enabled us to make 
a broad range of health care and support services available through 
community systems of care to increasing numbers of people with HIV/
AIDS. For many living with HIV/AIDS, these systems are their only 
source of care and treatment.
    In 2000, $16,568,647 of Florida's $84 million Ryan White Title II 
award will be allocated to 14 HIV consortia throughout the state. These 
consortia provide basic, primary patient care and support services to 
eligible persons living with HIV disease in their respective areas.
    Florida has worked hard to provide a continuum of care for all 
residents infected with HIV and to provide equal access to the standard 
of HIV care. We have taken a leadership role in promoting the 
coordination of Title I (patient care funding to cities), Title II 
(patient care funding to states), Title III (funding for early 
intervention service and planning), Title IV (funding for pediatric and 
family programs) and Part F programs (Special Projects of National 
Significance, dental reimbursement and AIDS Education and Training 
Centers). The state is committed to coordinating and planning programs 
that ensure that all persons living with HIV disease in Florida have 
access to basic care and support needs. We are also committed to 
avoiding duplication or overlap of services and obtaining services and 
products of the highest quality at the lowest possible cost. Through 
the coordination of CARE Act grantees, state and local partnerships 
have been established at every level.
    Florida's AIDS Drug Assistance Program (ADAP) has experienced 
tremendous growth over the last few years, and we expect to serve over 
12,000 HIV infected individuals through ADAP during 2000-2001. For the 
year 2000, the Florida ADAP is being funded with a combination of Ryan 
White Title II and state general revenue for a total of $70,000,000. At 
this time, the program provides 54 drugs on the formulary. This 
includes access to all antiretrovirals, all protease inhibitors, most 
major drugs to fight or prevent opportunistic infections, hepatitis A 
and B vaccines, blood modifiers, drugs for neuropathy, drugs for 
wasting, drugs for lipid-lowering and diabetes and drugs to lessen the 
side-effects of HAART therapy. This program is available in all of 
Florida's 67 counties through the Department of Health. The Ryan White 
CARE Act is responsible for the expansion of this critical program and 
the subsequent decline in HIV-related deaths in Florida. HIV/AIDS 
deaths peaked in 1995 with 4336 deaths and declined to 1547 in 1998.
    Another significant impact of Ryan White Title II is the AIDS 
Insurance Continuation Program. In the year 2000, we will fund the AIDS 
Insurance Continuation Program with Ryan White Title II funds and 
general revenue funds for a total of $4,593,016. This project, 
administered by the Health Council of South Florida in Miami, has been 
an overwhelming success with enrollment having grown from approximately 
100 clients in 1993/94 to approximately 1500 at present. This program 
is a tremendous success because it allows individuals with AIDS to 
continue to receive their private health care while avoiding the 
tremendous public expense associated with health care received under 
Medicaid or other publicly funded programs.
               SUPPORT OF THE RYAN WHITE REAUTHORIZATION
    Florida strongly supports the Ryan White Reauthorization. The 
approaches articulated in the Ryan White Reauthorization reflect many 
of the new dynamics of the HIV epidemic. The number of people living 
with HIV disease is growing and the diversity of the epidemic is 
broadening. This bill will give states the flexibility to tailor their 
response to the unique needs of the changing epidemic. As you consider 
the CARE Act Reauthorization, I would like to highlight the following 
six major areas of support that are part of HR 4807:

 Transitioning to the use of HIV cases as the basis for funding 
        allocations--We strongly support this transition which will 
        promote more effective targeting and distribution of CARE 
        resources. Confidential name reporting of HIV infection was 
        implemented in Florida in July 1997. Florida's confidential HIV 
        infection reporting system has identified 16,754 newly 
        diagnosed HIV cases through May 2000, including 158 pediatric 
        cases. The current estimated number of persons infected in 
        Florida is 65,000-100,000. We estimate that 65 percent of those 
        know their status and 35 percent do not. HIV infection 
        reporting plays a vital role in our ability to target HIV 
        prevention and early intervention efforts. HIV infection 
        reporting has allowed the state to be ``in front of the 
        epidemic.'' This enables us to get those infected with HIV into 
        care earlier, so they can live longer, healthier lives. HIV 
        infection reporting has clearly shown a significant increase in 
        HIV infection in Florida's minority communities. While blacks 
        comprise 13 percent of Florida's population, they account for 
        60 percent of the HIV cases. As a result of this alarming 
        trend, numerous minority initiatives have been implemented, 
        including the launching of a statewide media campaign, the 
        creation of the Minority HIV/AIDS Task Force, the passage of 
        legislation to improve racial and ethnic health outcomes, and 
        the hosting of state and national minority leaders at an 
        interagency health symposium and a number of leadership 
        conferences. We also work very closely with minority, 
        community-based organizations to implement culturally sensitive 
        HIV prevention and treatment programs and with clergy and their 
        congregations to mobilize risk-reduction education and 
        supportive attitudes from within the community.
 The use of CARE Act Title II funding for early intervention 
        activities--The use of CARE Act Title II funding for early 
        intervention activities, including activities that assist in 
        case finding and linkages to care, will strengthen Florida's 
        efforts to fight the spread of the terrible disease. Through 
        early intervention activities, including innovative counseling 
        and testing, such as the use of oral fluid testing, we will be 
        able to identify more individuals who are HIV infected and 
        unaware of their status. Getting these individuals into early 
        care and treatment is vital to successful HIV treatment. In 
        addition, access and the availability of health care services 
        represent key opportunities to prevent further HIV 
        transmission.
 The voluntary expansion of partner counseling and referral 
        activities--Partner counseling and referral activities are 
        effective interventions for reaching individuals who are at 
        high risk of HIV infection and are unaware of their risk. From 
        January to December of 1999, 6,258 positive HIV tests were 
        reported in Florida. Of this number, 2,801 tests were assigned 
        for notification of test results. Of these, 1,442 requested the 
        partner counseling and referral services provided by the 
        Department of Health. This intervention identified 2,784 
        partners and at-risk persons. From this number, 187 were 
        identified with a new positive HIV antibody test.
 Streamlining the administration of the CARE Act--We strongly 
        support the provision which requires the Secretary of HHS to 
        consult with states and Eligible Metropolitan Areas (EMAs) to 
        develop a plan for simplifying the application process for 
        Title I and Title II. Presently, the annual CARE Act 
        application process is overly burdensome for state and local 
        health departments, Title I planning councils and the federal 
        agency that administers Ryan White. The enormous amount of time 
        that these entities devote to the administrative requirements 
        of a yearly application process direct fiscal and human 
        resources away from the provision of services that are the 
        focus of the CARE Act.
 Grants for activities to reduce perinatal transmission--We 
        strongly support the authorization of additional funds to 
        further reduce perinatal transmission. We recommend, however, a 
        separate authorization for these grants and not taking money 
        from increases in Title II funds, base or ADAP. This provision 
        gives states the flexibility to devise programs appropriate to 
        their jurisdictions. In Florida, we have seen a dramatic 
        reduction in pediatric HIV/AIDS cases over the last few years. 
        Since 1992, we have experienced an overall 82 percent reduction 
        in reported pediatric AIDS cases. In May of 1999, an important 
        success for Florida was reported in the Centers for Disease 
        Control and Prevention Morbidity and Mortality Weekly Report. 
        Data from this report indicated that Florida had one of the 
        highest percentages of pregnant women who could recall being 
        tested for HIV. Another important milestone in our efforts to 
        make a difference in the lives of Florida's women and children 
        was the passage in the Florida Legislature of the Targeted 
        Outreach to Pregnant Women Act (TOPWA). This legislation 
        provides funds for local prevention and outreach projects for 
        women who are pregnant and at risk of delivering an HIV or 
        substance exposed newborn. These extremely successful projects 
        are coordinated through local health departments with 
        community-based providers.
 New competitive component of Title II--HR 4807 adds a 
        supplemental component to Title II which will support grants to 
        states that have one or more eligible communities. Eligible 
        communities are non-EMA areas that demonstrate severe need. We 
        strongly support this new competitive component for Title II. 
        It allows states that need additional resources to address 
        critical service shortages in rural and underserved areas.
    Since the Ryan White CARE Act was passed in the early 90s, the CARE 
Act has served as the most important program for HIV/AIDS care and 
treatment in our state. We would like to thank you once again for the 
opportunity to provide testimony on the impact of HIV/AIDS in Florida 
and to commend the members of this committee for their hard work, 
support and leadership on this critical issue. I am available for 
questions and comments as you work on this legislation.

    Mr. Bilirakis. Thank you very much, sir.
    Dr. Birkhead, please proceed.

                STATEMENT OF GUTHRIE S. BIRKHEAD

    Mr. Birkhead. Thank you, Mr. Chairman and members of the 
subcommittee.
    My name is Guthrie Birkhead. I am the Director of the AIDS 
Institute at the New York State Department of Health. The AIDS 
Institute administers the Ryan White CARE Act Title II funds 
that go to New York State.
    I am pleased to have the opportunity to speak to you today 
about the importance of the Ryan White CARE Act, which is 
essential in helping us provide comprehensive services to 
persons with HIV/AIDS in New York.
    The HIV epidemic has heavily impacted New York State. 
Approximately 141,000 AIDS cases have been reported in New 
York, and approximately 56,000 New Yorkers are living with 
AIDS. That is about 19 percent of the national total.
    Persons with AIDS in New York differ from those in many 
parts of the country in that 75 percent are members of minority 
groups. Women make up 26 percent of cases; more than in other 
areas. Injection drug use in the most common risk factor 
reported in 40 percent of cases.
    Persons diagnosed with AIDS are just the tip of the HIV 
iceberg. It is estimated that the number of persons living with 
HIV in New York, beyond the 56,000 with AIDS, is about 75,000 
to 115,000. We will have a better idea of the number of persons 
with HIV infections in New York, as we implement HIV reporting 
over the next one to 2 years.
    New York began its response to the HIV epidemic with the 
creation of the AIDS institute in 1983, ADAP in 1987, and by 
1991, the State had a well developed system of HIV care, 
supported by Medicare and State grant dollars.
    When Federal Ryan White funding became available, the CARE 
Act funds were used, along with increased in State funding, to 
augment the existing ADAP Program, extend primary care services 
to the uninsured through our ADAP Plus Program, to fund 
community-based case management and supportive services, and to 
establish regional Ryan White care networks, which are local 
groups in 16 geographic areas that help determine local 
priorities.
    CARE Act funding is an essential source in New York to 
support our continuum of services, and has had a tremendous 
impact on the health and quality of life for New Yorkers.
    CARE Act funds make available the new therapies to 
uninsured persons through our ADAP Program, which is a 
traditional pharmaceutical program, and our ADAP Plus Program, 
which provides ambulatory insurance to persons without 
insurance.
    These programs are supported by a combination of State and 
Ryan White Title II funds, with a significant contribution of 
Title I funding from the Title I EMAs. This illustrates what 
can be accomplished in partnership with funding from all 
sources, State and Federal, to provide state-of-the-art care.
    More than 53,000 persons living with HIV/AIDS have enrolled 
in New York's ADAP since its inception. More than 20,000 were 
enrolled in 1999. The program recently has experienced 
explosive growth due to the new therapies. The monthly 
utilization has increased 137 percent, up to 10,900 served last 
month. Monthly expenditures have increased 450 percent in the 
last 5 years, up to $12 million per month.
    However, ADAP has been very successful in assuring access 
to therapies. In the first quarter of the year 2000, 80 percent 
of our ADAP recipients were using three or more antiretroviral 
drugs in combination, while another 11 percent were taking two 
drug combinations. We have seen no significant differences in 
the rates of access by race, gender, income or risk factor.
    Without, however, the increases in Federal ADAP 
supplemental funds, New York would not be able to offer access 
to this standard of care.
    Combination therapies are not the only thing that allow 
persons to live longer and healthier. They allow people to 
reduce their risk of transmission to others.
    But treatment is not just a matter of writing a 
prescription and paying the pharmacy bill, and the CARE Act has 
been instrumental in maximizing the potential for these new 
drugs to extend and improve life by supporting programs and 
quality assurance, case management, and in very important 
treatment adherence and education, which allow people to stay 
on schedule with their medications.
    CARE Act funding also enables us to make HIV services 
accessible to those most difficult to reach, high risk 
populations not linked to the health care system, which include 
substance users, communities of color, the homeless, women and 
children, youth, and particularly youth on the street and gay 
youth, and persons with multiple diagnoses [HIV, mental 
illness, and substance use].
    For example, we have located HIV services and settings 
where affected populations already receive services like 
substance abuse treatment settings, and agencies serving 
communities of color, and have brought the services to the 
client via mobile vans and home visits.
    CARE Act funded programs in conjunction with Medicaid and 
State funds have resulted in improved access to care, reduced 
hospital costs, and reduced morbidity and mortality. Hospital 
utilization in the last 3 years fell 30 percent. The average 
length of stay fell 45 percent. HIV/AIDS death fell 77 percent 
in New York.
    Reauthorization of the CARE Act is critical to our efforts 
to provide quality care for persons with HIV/AIDS, and the 
following are our recommendations for the reauthorized CARE 
Act. First, we thank Congress for maintaining the existing 
title structure of the CARE Act.
    Second, we support the House bill provision that will 
eventually change base Title I and II funding formulas from 
AIDS cases to one based on HIV cases. It will take States like 
New York a couple of years, after embarking on HIV reporting, 
to get our systems fully operational in providing quality data.
    An essential component of the formula is the hold harmless 
provision. The current House version, leading up to 25 percent 
reductions by the fifth year, we do not support. We do support 
the hold harmless provisions in the Senate bill, which call for 
reductions of no more than 2 percent per year, as there have 
been in the past.
    Third, we do support the House provision that adds 
supplemental components to Title II, if the increase in Title 
II base funds is at least $20 million over fiscal year 2000. 
This supplemental component will support competitive grants to 
States that have communities with severe need.
    The Senate bill's provision, which relates to a 
supplemental component, creates Title I-like awards. We believe 
that the House bill would more effectively address the priority 
unmet needs for all non-Title I areas.
    We do support grants for counseling, testing, and treatment 
of pregnant women and infants in New York. As has been 
indicated, our newborn testing program has provided valuable 
information to track perinatal HIV transmission, and to assist 
in getting HIV exposed infants and newborns into care.
    HIV testing in the newborn or delivery setting may permit 
treatment to prevent perinatal transmission for women not 
tested during prenatal care. We understand that this funding 
will not be at the expense of other Title II programs.
    I have just a couple more recommendations. Because the 
number of persons living with HIV continues to increase because 
of treatment, we do recommended expanded authorized funding 
levels for all Titles. We recommend further that the 
reauthorized CARE Act allow ADAP supplemental funds to be used 
specifically for medical monitoring, laboratory testing, and 
medication adherence support, all of which are key components 
of HIV treatment, as well as for HIV health insurance 
continuation.
    Finally, getting people tested for HIV and into care as 
quickly as possible is important for successful HIV treatment. 
Therefore, we support the House bill provision related to the 
use of the CARE Act funds for intervention services and early 
intervention, which allows use of Title I and II funds to 
support services in a variety of settings.
    We thank the House for its vision in this area. We would 
suggest, however, that some language has been eliminated from 
previous versions of the bill which allowed these early 
intervention funds to be used in a variety of community-based 
settings, and not just medical settings.
    Often, providers best able to reach under-served minority 
populations are community-based organizations that might not 
meet the current definition established in the bill. We 
encourage the restoration of language that would enable all 
funded entities to carry out these early intervention services.
    I hope my remarks have illustrated the critical importance 
of the Ryan White CARE Act in New York. I look forward to your 
questions. Thank you.
    [The prepared statement of Guthrie S. Birkhead follows:]
 Prepared Statement of Guthrie S. Birkhead, Director, AIDS Institute, 
                  New York State Department of Health
    Good morning. My name is Guthrie Birkhead. I am the Director of the 
AIDS Institute at the New York State Department of Health. The AIDS 
Institute administers the Ryan White CARE Act Title II funds that go to 
New York State. I am pleased to have the opportunity to speak to you 
regarding HIV/AIDS in New York State and the importance of the Ryan 
White CARE Act in helping us provide comprehensive services to persons 
with HIV/AIDS in New York.
    Let me begin by telling you a little about the HIV epidemic in New 
York State. Approximately 141,000 AIDS cases have been reported in New 
York State and approximately 56,000 New Yorkers are living with AIDS--
about 19 percent of the national total. The epidemiology of AIDS in New 
York is different from many other areas of the country. Of those living 
with AIDS, at least three quarters are members of minority groups: 43 
percent are Black, 32 percent are Hispanic, 23 percent are White, and 
about 2% are Asian American, Pacific Islander or Native American. Women 
make up 26% compared to 74% for men. Injection drug use is the most 
common risk factor reported in 40% of cases. Persons diagnosed with 
AIDS are just the tip of the iceberg of HIV infection. It is estimated 
that the number of persons living with HIV, beyond the 56,000 with AIDS 
in New York State, is 75,000-115,000. We will have a better idea of the 
number of persons with HIV, and the number of new HIV infections each 
year, as HIV reporting is implemented in New York over the next 1-2 
years.
    In discussing the impact of the Ryan White CARE Act on New York 
State, it must be noted that New York began to organize its response to 
the HIV/AIDS epidemic with the creation of the AIDS Institute within 
the State Health Department in 1983. By 1991, the State had built a 
system of HIV care that included ambulatory care, hospital care, home 
care, nursing home care, and case management supported by Medicaid and 
State grant dollars; a range of supportive services paid for by State 
and federal grant funds; and the AIDS Drug Assistance Program, or ADAP, 
which began in 1987. When federal Ryan White funding became available 
in 1991, New York State's system of community-based health care and 
services was already well developed; Ryan White funds were used, along 
with increases in State and CDC resources, to expand and augment this 
system. Specifically, Ryan White resources were used to:

 Augment existing initiatives, most notably the ADAP and home 
        care programs for the uninsured;
 Extend primary care services to the uninsured;
 Fund new community-based case management and supportive 
        services programs; and
 Establish Ryan White HIV care networks throughout the State. 
        The care networks are local groups of providers in 16 
        geographic areas who work with the State health department to 
        determine local program priorities and funding allocations.
    As the number of people with HIV and AIDS in New York has increased 
over the years, so has the funding available through the CARE Act. New 
York State receives about $285 million for HIV/AIDS services through 
all titles and sections of the Ryan White CARE Act. Ryan White funding 
is an essential source of support for New York's continuum of HIV 
services and has had a tremendous impact on the health and quality of 
life for New Yorkers affected by HIV/AIDS.
    A primary impact of the Ryan White CARE Act in New York is to make 
available existing and emerging HIV/AIDS therapies to uninsured persons 
who are above the level of Medicaid eligibility. In New York State, the 
ADAP model has been expanded and is now known as the ``HIV Uninsured 
Care Programs.'' These programs play a vital role in New York State's 
health care system for people living with HIV/AIDS.
    The program has three components:

 ADAP, the traditional program that assures access to drugs for 
        uninsured and underinsured New Yorkers with HIV/AIDS;
 ADAP Plus, a program which provides access to ADAP enrollees 
        to primary care services and laboratory tests for HIV disease 
        management; and
 The Home Care Program, which provides more intensive medical 
        services needed to maintain uninsured and underinsured people 
        in their homes and avoid costly hospitalization or nursing home 
        care.
    Through these programs, providers are reimbursed on a fee-for-
service basis for the delivery of HIV services and medications. The 
approaches are client-centered and seek to empower individuals with no 
or inadequate insurance to access needed services. The programs are 
primarily supported by federal funds under Ryan White Title II along 
with an appropriation of state funds. In addition, the Department of 
Health has formed unique partnerships with the Title I Eligible 
Metropolitan Areas (EMAs) in New York, which predominately support the 
ADAP Plus ambulatory insurance program, to jointly support the 
programs. Thus, the HIV Uninsured Care Programs are an example of what 
can be accomplished by blending funding from all sources, State and 
Federal, to ensure state-of-the-art care for HIV-positive persons.
    The introduction of combination antiretroviral therapies for HIV in 
1995 has had a dramatic effect in reducing progression of HIV to AIDS 
and AIDS deaths. As a result, New York's ADAP program has experienced 
explosive growth in the number of individuals accessing care and in 
expenditures during the past three years. More than 53,000 people 
living with HIV/AIDS have enrolled in ADAP since its inception; more 
than 20,000 were enrolled in 1999. To illustrate the growth of the 
program, let me give you some figures on monthly utilization. In 
January 1996, approximately 4,600 people were served. In June 2000, 
10,900 were served--an increase of about 137 percent in a little over 
three years. More dramatic is the increase in monthly expenditures. 
Expenditures for the month of January 1996 were $2.2 million. By June 
2000, monthly expenditures were $12.1 million--an increase of 450 
percent. This is due to the expense of the combination HIV therapies, 
which may run $12,000 to $15,000 per person per year. The ADAP Plus 
ambulatory insurance program has also seen a doubling of utilization 
and annual expenditures for medical care and laboratory services.
    Through ADAP, New York has been able to assure that all of the 
populations affected by HIV have equal access to the standard of HIV 
care--specifically combination therapy. In the first quarter of 2000, 
80 percent of ADAP participants were using three or more antiretroviral 
drugs in combination, while another 11 percent were taking two-drug 
combinations. Our ongoing analysis shows no significant differences in 
the rates of access to antiretrovirals by gender, race/ethnicity, 
income, or HIV risk factor. If not for the availability of Ryan White 
funds for ADAP--and the increases in ADAP supplemental funds available 
under the CARE Act--New York would not be able to offer access to the 
standard of HIV care to all of its residents affected by HIV.
    The combination therapies not only allow persons with HIV to live 
longer and healthier, allowing many to be able to return to the work 
force, they also reduce the risk of HIV transmission to others. 
However, treatment for HIV is not simply a matter of writing a 
prescription and paying the pharmacy bill. Quality health care, case 
management, treatment education and adherence support programs are 
necessary to allow people to stay on schedule with their medication. 
The Ryan White CARE Act has been instrumental in maximizing the 
potential of these new drugs to extend and improve life through a 
comprehensive system of care and support services. Successful adherence 
to HIV medications is particularly critical because HIV develops 
resistance to the combination therapies very quickly if medication 
doses are missed or delayed. Resistant strains could limit the 
effectiveness of HIV drug therapies in the future. Ryan White CARE Act 
funding is now being used in New York to help persons with HIV stay on 
schedule with their medications and improve the effectiveness of the 
therapies.
    Another significant impact of the Ryan White CARE Act on New York 
State is our ability to effectively meet a challenge which has existed 
in our State since the beginning of the epidemic--that is, the 
challenge of making HIV services accessible to those populations who 
are not linked to the health care system and are most difficult to 
reach and at highest risk: substance users; communities of color; the 
homeless; women and children; youth, particularly youth on the street 
and young gay men; and persons with multiple diagnoses (HIV, mental 
illness and substance use). New York has integrated funds from State 
and Federal sources to design population-based program models that 
offer a comprehensive package of services to all affected populations 
throughout the State. For example, we have located HIV services in 
settings where affected populations already receive services, like 
substance abuse treatment settings and agencies serving communities of 
color; we have co-located HIV services with support services that 
facilitate access to care; and we have brought the services to the 
client, via mobile vans and via home visits.
    In designing initiatives and determining the relative priority for 
program models, we have worked closely with the Ryan White Title II 
networks which have been established throughout the state, with our 
Title I EMAs and their planning councils, and with the private, not-
for-profit, and academic communities. All initiatives are planned and 
prioritized with the participation of infected persons and health and 
human services providers on the front lines. This is another 
significant effect of the Ryan White CARE Act--it has fostered the 
establishment of local and state partnerships at many levels, 
contributing to our success in ensuring access to a continuum of HIV 
care services for persons in all parts of the state and at all stages 
of the disease.
    These programs, put into place with a combination of Ryan White 
CARE Act funds in conjunction with Medicaid and state grant funds, have 
resulted in improved access to care, reduced hospital costs, and 
reduced morbidity and mortality from AIDS. Expensive hospital 
utilization has been reduced, with drastic decreases in hospital 
discharges and lengths of stay. Hospital discharge data show a 
reduction in HIV/AIDS hospitalizations from 65,000 in 1995 to less than 
45,000 in 1998--a decrease of more than 30 percent. The average HIV/
AIDS hospital length of stay was 18.9 days in 1990 and 10.2 days in 
1998--a reduction of more than 45 percent. In 1990, 50 percent of stays 
were ten days or less, and in 1998, 75 percent were ten days or less.
    In addition, the availability of combination antiretroviral therapy 
and a full continuum of HIV services in New York State has resulted in 
a dramatic reduction in HIV-related mortality. Between 1994 and 1995, 
there was a one percent reduction in all deaths from HIV/AIDS. Between 
1995 and 1999, there has been a decline in HIV/AIDS deaths of more than 
77 percent. And effective therapy will prevent the development of 
antiretroviral resistance and reduce HIV transmission to others.
    Reauthorization of the Ryan White CARE Act is critical to our 
efforts in New York to provide quality health care for persons with 
HIV/AIDS. I would like to discuss the proposed Ryan White bills and our 
recommendations for the reauthorization of the CARE Act that will 
enhance our ability to serve persons with HIV/AIDS.
    (1) First, we thank Congress for maintaining the existing Title 
structure of the CARE Act, with ADAP supplemental funds as a component 
of Title II funding to states. Changing the structure of the Act could 
have resulted in harmful disruptions in services.
    (2) Second, we support the House bill provision that revises the 
Title I and base Title II funding formula from one based on AIDS cases 
to one based on HIV cases toward the end of the reauthorization period. 
While it will take states like New York who are just now embarking on 
HIV reporting some time to get their systems fully operational and 
producing quality data, we believe that continuing to base the 
allocation of funds on AIDS cases could be detrimental to states that 
have been successful in making treatments available to persons with 
HIV, as fewer of them progress to AIDS. An essential component of the 
formula, though, is the hold harmless provision. The CARE Act should 
establish hold harmless provisions for Title I and Title II that will 
avert drastic reductions in awards and disruptions in services. The 
House bill's hold harmless provisions could lead to a 25% reduction in 
awards to states and cities in the fifth year of the reauthorization 
period. We support the hold harmless provisions in the Senate bill, 
which call for reductions of no more than two percent per year.
    (3) Third, we support the House provision that adds a supplemental 
component to Title II if the increase in Title II base funds is at 
least $20 million over the FY 2000 amount. This supplemental component 
of Title II will support competitive grants to states that have 
communities with severe need. The Senate bill's provision related to a 
supplemental component of Title II does not include competitive awards. 
Rather, it creates more ``Title I-like'' awards. We believe the House 
bill would be more effective in addressing priority unmet needs in all 
non-Title I areas.
    (4) We support grants for counseling & testing and treatment of 
pregnant women and infants. In New York State, our newborn testing 
program has provided valuable information to track perinatal HIV 
transmission and to assist in getting HIV-exposed newborns into health 
care. HIV testing in the newborn setting may permit treatment to 
prevent perinatal transmission for women not tested during prenatal 
care. We understand that this funding will not be at the expense of 
other Title II programs.
    (5) Because the number of people living with HIV continues to 
increase we recommend expanded authorized funding levels for all Titles 
of the Act.
    (6) We recommend further that the reauthorized CARE Act allow ADAP 
supplemental funds to be used specifically for medical monitoring, 
laboratory testing, and medications adherence support--all of which are 
key components of HIV treatment--as well as for health insurance 
continuation. The House bill allows for the use of ADAP funds for 
continuation of health insurance, but does not address medical 
monitoring, lab testing and adherence support.
    (7) Getting people tested for HIV and into care as quickly as 
possible is important for successful HIV treatment. Therefore, we 
support the House bill provision related to the use of CARE Act funding 
for early intervention services, which allows for the use of Title I 
and Title II funds to support early intervention services in a variety 
of settings. In addition, the House bill allows for the use of funds 
for outreach for purposes of identifying individuals with HIV who are 
not receiving services. We thank the House for its vision in this area. 
However, we question the elimination of the provision allowing for 
early intervention activities in any entity receiving Title II funds. 
Previous versions of the House bill included this important language, 
but it was removed from the bill that was finally introduced. Often, 
the providers best able to reach underserved, minority populations are 
community-based organizations that might not meet the definitions 
established in the legislation. We strongly encourage the restoration 
of the language that will enable all funded entities to carry out early 
intervention activities.
    (8) The House bill requires that we allocate an ``appropriate'' 
amount of funds to support identifying individuals not utilizing 
services and encouraging them to do so. Do not mandate in legislation 
that we allocate a specific portion of our Title II grant for certain 
types of activities. It is essential that we have flexibility in 
administering our Title II programs to ensure that local needs are 
addressed.
    (9) Previous versions of the House bill allowed for the use of 
Title II funds for surveillance activities. We supported this 
provision. The bill that was introduced, however, eliminates this 
provision. We support the use of Title II funds for surveillance, 
perhaps with a cap and language requiring that funds supplement rather 
than supplant existing funding for such activities.
    (10) The House bill calls for additional participatory planning 
processes with regard to the Title II application. We do not support 
this provision. Existing requirements related to participatory planning 
are more than sufficient. For example, we are required to conduct 
public hearings on our application, we are required to involve all 
titles and consumers in the statewide coordinated statement of need, 
our Title II consortia participate in planning, and we are required to 
coordinate activities with other programs and agencies.
    (11) Do not require in statute that we conduct planning and 
priority setting based on the needs of individuals not in care. This 
information cannot be routinely gathered short of a major research 
program, which probably would not be cost effective.
    (12) We do not support a legislative mandate that support services 
must be related to health care. Both the House and Senate bills require 
support services to facilitate, sustain or enhance health care. Some 
support services enhance quality of life, and some affected 
populations, like women and children, require support services that 
might not be directly linked to care, such as permanency planning and 
legal services that assist families affected by HIV.
    (13) We support the House language calling for preferences related 
to Title III awards supported by newly appropriated funds. The House 
language allows for preference to be given to underserved or rural 
areas, while the Senate language allows for preference for rural areas 
only.
    I hope my remarks have illustrated the critical importance of the 
Ryan White CARE Act to New York State, and that you will consider our 
recommendations for a reauthorized CARE Act. I would be happy to 
discuss these issues further with you or your staff.
    Thank you for the opportunity to speak to you today.

    Mr. Bilirakis. Thank you very much, Doctor.
    I might add that as promised, Drs. Fox and O'Neill have 
stayed in the audience, and are listening to all this 
testimony. We really appreciate that very much.
    Mr. Davy, please proceed.

                    STATEMENT OF JOSEPH DAVY

    Mr. Davy. Thank you, Chairman Bilirakis, Representative 
Brown, and members of the committee, for the opportunity to 
testify before you today.
    Ladies and gentlemen, our clients are still dying of AIDS, 
though not in the numbers they were just a few short years ago. 
Because our clients are living longer lives, their need for 
services has increased tremendously. The cost of medications is 
out of reach for all but the wealthiest of individuals.
    Case loads of our case managers have increased 
approximately 10 percent in each of the last 3 years. The 
complexity of our clients' needs has changed dramatically.
    Today, you have heard about the changing face of AIDS in 
America. I am here to tell you that it is not a changing face 
of AIDS, but an expanding face of AIDS.
    At Columbus AIDS Task Force, over 35 percent of our clients 
are African American and Hispanic. Yet, those two populations 
account for only about 18 percent of the total population in 
Central Ohio. It is also true in Ohio that 55 percent of new 
infections are still a result of male to male transmission.
    The success of the Ryan White CARE Act is credited, in 
large part, to the local control inherent in the operation of 
the CARE Act. I would like to thank the Members of Congress for 
producing legislation that works very well for addressing the 
needs of our clients.
    I appreciate that Representative Coburn and Waxman, and 
their respective staffs, have worked very diligently over the 
past several weeks to put together a bill which continues to 
address these needs.
    I was particularly encouraged to see in the final drafts of 
the bill the Representatives' recognition of the success of the 
CARE Act. Many of the provisions in both the House and Senate 
versions of reauthorization will improve and strengthen the 
CARE Act.
    By far the most relevant provision affecting Ohio and other 
communities around the country with large epidemics is the 
Title II Supplemental Grant Program. This important provision 
would recognize communities which do not qualify for Title I 
funding, yet have a severe need to address the burgeoning 
epidemic.
    Second, the hold harmless provisions in the Coburn-Waxman 
bill are an ingenious mechanism to achieve equitable 
distribution of CARE Act funds without jeopardizing 
communities' existing service delivery systems.
    You will recall that in the last reauthorization, hold 
harmless was meant to be a stop gap for communities that would 
be affected by the change in formula definition. It was never 
intended to be a permanent part of the CARE Act.
    The provision recognizes that Ryan White funding should be 
based on need, but that it takes time to plan for pending 
funding decreases through changes in service delivery. I 
believe the hold harmless provision in the Coburn-Waxman bill 
does just that.
    Third, the Columbus AIDS Task Force, for several years, has 
worked under an outcome-based measurement model for all the 
services we provide. We know that to provide the programs and 
services we offer, it takes competent, professional staff to 
manage and administer those programs.
    We are concerned about any provisions in reauthorization 
that would impair our ability to attract employees with the 
experience and background to provide our clients with the best 
service we can.
    Fourth, as many of our clients are returning to the work 
force, we find that many of them are finding employment in the 
field of AIDS service delivery. Provisions in the Coburn-Waxman 
bill seek to exclude these individuals from Title I planning 
councils.
    Recognizing the role that affected and infected individuals 
play in AIDS service organizations, as staff members, board 
members, and volunteers, we are concerned about provisions 
which would eliminate this valuable insight from planning 
councils.
    Finally, provisions in the Coburn-Waxman bill add 
incentives for States to move to mandatory testing laws for the 
reduction of perinatal transmissions of HIV. We are encouraged 
by the bipartisan agreement reached by Representatives Coburn 
and Waxman.
    While we at Columbus AIDS Task Force certainly encourage 
the development of programs that will reduce all transmission, 
we are concerned about using tight dollars for mandatory 
testing programs for perinatal transmissions.
    Ladies and gentlemen of the committee, again, I thank you 
for the opportunity to provide testimony on this important 
piece of legislation.
    I would also again like to thank you for your continued 
support of the Ryan White CARE Act. You have truly made a 
difference in the lives of my friends and clients.
    Finally, I urge you to the swift reauthorization of the 
Ryan White CARE Act. Thank you.
    [The prepared statement of Joseph Davy follows:]
Prepared Statement of Joseph Davy, Policy Advocate, Columbus AIDS Task 
                                 Force
    Thank you Chairman Bilirakis, Representative Brown, and members of 
the committee for the opportunity to testify before you today. My name 
is Joe Davy and I am the Policy Advocate for Columbus AIDS Task Force 
in Columbus, Ohio.
    In 1989, I watched someone very close to me go through a long 
illness. At the time, John's family and friends did not know he had 
AIDS because of the stigma that went along with AIDS back then. He was 
in and out of the hospital several times that year with various bouts 
of pneumonia, anemia, and lesions. Although several of us suspected he 
might have AIDS, it was never confirmed. He died several months after 
his 21st birthday.
    On October 1, 1994, months before his 40th birthday, I watched my 
best friend die of AIDS after battling the disease for nearly 10 years. 
Dennis was one of those people whom everyone loved. He was vibrant, 
intelligent, and an inspiration to all who knew him. At his memorial 
service, his father, who had struggled with Dennis' sexual orientation 
and illness, talked about Dennis' coming out to him. Dennis had been 
living in San Francisco for several years and was coming home for a 
visit. He had told his father that he had something very important to 
discuss with him. Dennis' father suspected Dennis was gay and that he 
probably had AIDS so he tried to prepare himself for the conversation. 
When Dennis and his father sat down to talk, Dennis began the 
conversation, ``Dad, I have something to tell you that I have been 
hiding from you.'' His father braced himself. Dennis confessed, ``I 
drive a Yugo!''
    In these past 12 years, we have watched too many people die of 
AIDS. Some have faced it alone like John, others have laughed at it 
bravely like Dennis. While all of those who have faced this disease 
have had to deal with it in their own way, there is one sad truth. They 
all needlessly died too young.
    Unfortunately, John and Dennis died before the treatments that are 
available today are prolonging people's lives. We have all heard and 
seen the amazing effects of the new cocktail therapies on our clients' 
lives. Many of the clients at the Columbus AIDS Task Force are 
returning to the work force after being told three or four years ago 
that they only had weeks, or in some cases, days to live. While these 
stories are incredible and hopeful, they only tell one side of the 
story.
    Our clients are still dying of AIDS, though not in the numbers they 
were a few short years ago. Because our clients are living longer 
lives, their need for services has increased tremendously. The cost of 
the medications is out of reach for all but the wealthiest of 
individuals. Case loads of our case managers have increased 
approximately 10% each year the last 3 years. In addition to the 
increased size of our case loads, the complexity of our client's needs 
has changed dramatically.
    You have probably heard about the changing face of AIDS in America. 
I am here to tell you today that it is not a changing face of AIDS, but 
an expanding face of AIDS. At the Columbus AIDS Task Force, over 35% of 
our clients are African American and Hispanic. Yet those two 
populations account for only about 18% of the total population in 
central Ohio. It is true that AIDS is affecting the minority 
populations in catastrophic proportions. But, it is also true that in 
Ohio, 55% of new infections are still a result of male to male 
transmission. So the epidemic is not changing from one population to 
another but is expanding across several populations.
    It is not unusual for our social workers to get calls from newly 
released prisoners. Often, these men and women may have heard one of 
our educators speaking at a pre-release program or have seen our 
information on the prison computers. When they are released from prison 
several weeks later, they will call us from the bus station with ten 
dollars in one pocket and a prescription in the other. Often, they have 
no family or other means of support and are looking to us to provide 
them with housing, help with paying for their medications, assistance 
with directions on how to properly take their medications, and 
identifying other social services they may need and be eligible for.
    Many of our clients are coming from homeless shelters as well. 
Often, these clients come with issues of addiction and alcoholism, 
mental health, domestic abuse, and others. Our case managers find that 
these individuals' HIV/AIDS status is often third or fourth on the list 
of the things they need to deal with. Getting the client stabilized in 
housing and substance use or mental health services is of the utmost 
concern before we can even deal with complicated HIV drug regimens.
    I point out all these things because they all highlight the 
importance of the Ryan White CARE Act in the lives of people living 
with HIV/AIDS. Because of the Ryan White CARE Act, our clients are able 
to be on life prolonging medications they could not otherwise afford. 
People with HIV/AIDS are able to maintain stable housing, work through 
mental health and substance use issues, and have the resources 
available to remain independent, and, in some cases, return to the work 
force. AIDS Service Organizations like the Columbus AIDS Task Force are 
able to hire case managers and social workers to provide these valuable 
and much needed services to people living with HIV/AIDS.
    Through Title III of the Ryan White CARE Act, the Columbus AIDS 
Task Force has been able over the past two years to increase access to 
primary health care services for our clients in Southeastern Ohio, a 
largely rural area with an increasing AIDS epidemic. Without the funds 
from the CARE Act, people living with HIV/AIDS in these rural 
communities would have to drive to Columbus for their health care and 
other services. For some, that could mean a 200 mile round trip just to 
see a doctor. These individuals cannot afford overnight stays and that 
kind of trip on a person with a weakened immune system can be 
exhausting. With Ryan White, we are able to provide training for 
service providers in the rural communities to ensure those providers 
are current on HIV treatment issues. This enables our clients in rural 
communities to access services closer to home from trained, competent 
providers.
    Ladies and gentlemen, the success of the Ryan White CARE Act is 
credited in large part to the local control inherent in the operation 
of the CARE Act. I would like to thank the members of Congress for 
producing a piece of legislation that works very well for addressing 
the needs of our clients. I know that Representatives Coburn and Waxman 
and their respective staffs have worked very diligently over the past 
several weeks to put together a bill which continues to address those 
needs. I was particularly encouraged to see in the final drafts of the 
bill the Representatives' recognition of the success of the CARE Act. 
Many of the provisions in both the House and Senate versions of 
Reauthorization will improve and strengthen the CARE Act but these 
provisions do not serve to overhaul the Act.
    In that regard, I would like to point to some provisions of 
Reauthorization that will have the greatest impact on HIV infected 
individuals and the organizations which provide HIV/AIDS services.
    By far, the most relevant provision affecting Ohio and other 
communities around the country with large epidemics is the Title II 
Supplemental Grant Program. This important provision would recognize 
communities which do not qualify for Title I funding yet have a severe 
need to address the burgeoning epidemic. Funds generated by this 
provision will be used to provide care and treatment services in cities 
and states where the AIDS epidemic is overwhelming service delivery 
systems.
    Second, the Hold Harmless provisions in the Coburn-Waxman bill are 
an ingenious mechanism to achieve equitable distribution of CARE Act 
funds without jeopardizing communities' existing service delivery 
systems. You will recall that in the last reauthorization, Hold 
Harmless was meant to be a stop gap for communities that would be 
affected by the change in formula definition. It was never intended to 
be a permanent part of the CARE Act. The provision recognizes that Ryan 
White funding should be based on need, but that it takes time to plan 
for pending funding decreases through changes in service delivery. I 
believe the Hold Harmless provision in the Coburn-Waxman bill does just 
that.
    Third, Columbus AIDS Task Force, like many AIDS Service 
Organizations, for several years has worked under an outcome-based 
measurement model for all the services we provide. We are proud of the 
fact that our client needs assessment surveys continue to return 
glowing reports on the services we provide. We also know, however, that 
to provide the programs and services we offer, it takes competent, 
professional staff to manage and administer those programs. We are 
proud that we are able to maintain our administrative and fundraising 
costs to under 15% of our budget, which is less than or equal to other 
not-for-profit organizations of similar size. We are concerned about 
any provisions in Reauthorization that would impair our ability to 
attract employees with the experience and background to provide our 
clients with the best service we can. We strongly believe in 
accountability and continue to hold ourselves to a higher standard than 
that required by our funders but provisions which seek to limit or 
expose administrators' salaries seem punitive and intrusive.
    Fourth, as many of our clients are returning to the workforce, we 
find that many of them are finding employment in the field of AIDS 
service delivery. Provisions in the Coburn-Waxman bill seek to exclude 
these individuals from Title I Planning Councils. Recognizing the role 
that affected and infected individuals play in AIDS Service 
Organizations, as staff members, board members, and volunteers, we are 
concerned about a provision which would eliminate this valuable insight 
from the Planning Councils.
    Finally, provisions in the Coburn-Waxman bill add incentives for 
states to move to mandatory testing laws for the reduction of perinatal 
transmissions of HIV. We are encouraged by the bipartisan agreement 
reached by Representatives Coburn and Waxman. According to the CDC's 
HIV/AIDS Surveillance Report, during the time period from 1992-1998, 
perinatal transmission of HIV has decreased over 75%. While we at 
Columbus AIDS Task Force certainly encourage the development of 
programs that will further reduce perinatal transmission, we are 
concerned about using tight dollars for mandatory testing programs. 
Pregnant women should be counseled about the benefits and 
responsibilities of testing and potential treatments if they are found 
to be HIV-positive. Women should then be allowed to make the choice of 
whether to be tested after they have been counseled. I know we share 
the same goals to reduce perinatal transmission.
    Ladies and Gentlemen of the committee, again I thank you for the 
opportunity to provide testimony on this important piece of 
legislation. I would also again like to thank you for your continued 
support of the Ryan White CARE Act. You have truly made a difference in 
the lives of my friends and clients. And, finally, I urge you to the 
swift reauthorization of the Ryan White CARE Act. I would be happy to 
answer any questions you may have at this time.

    Mr. Bilirakis. Thank you very much, sir.
    Ms. Mann.

                    STATEMENT OF DOROTHY MANN

    Ms. Mann. Good afternoon, Mr. Chairman and members of the 
subcommittee. I am the Executive Director of the Family 
Planning Council, serving Philadelphia and the four surrounding 
counties.
    The Council provides STD, HIV, and family planning services 
to over 107,000 clients, annually. My organization is the lead 
agency of a community network known as the Circle of Care, 
which provides prevention, comprehensive health, and support 
services to HIV positive children, youth, women, and their 
families.
    This program is principally funded through Title IV of the 
Ryan White CARE Act, and receives additional support from 
Titles I and II.
    I am here today representing AIDS Alliance for Children, 
Youth, and Families. AIDS Alliance is a national organization 
that addresses the needs of children, youth, and families, who 
are living with, affected by, or at risk for HIV and AIDS.
    With the Thirteenth International Conference on AIDS 
currently taking place in Durban, South Africa, the Nation 
hardest hit by the AIDS pandemic, our awareness of the global 
AIDS crisis has never been greater.
    Yet, here in the United States, it has almost become 
acceptable that 40,000 people are newly infected with HIV each 
year.
    Today, I will focus my remarks on the critical importance 
of incorporating prevention messages into care, because unless 
we change how we approach this epidemic, another 40,000 people 
will be infected with HIV next year, as well.
    Young people are particularly hard hit by HIV. People under 
25 account for at least half of the 40,000 new HIV infections 
in the United States.
    So it is abundantly clear that with 40,000 new HIV cases a 
year, for the next 5 years at least, the number of people 
needing services under the Ryan White CARE Act will continue to 
increase, as will the cost and complexity of the services they 
require.
    I would like to take a moment to commend H.R. 4807's 
emphasis on making HIV prevention an integral component of care 
for HIV positive people.
    The Ryan White CARE Act is not a substitute for the HIV 
prevention programs, based on CDC. But the CARE Act has a 
critical role to play in helping to stem the spread of this 
disease.
    Titles I and II have been explicitly described and allowed 
to do case finding as a new responsibility in the House bill. I 
commend you for this.
    It goes without saying that HIV is spread from an infected 
person to an uninfected person. But we have focused HIV 
prevention almost exclusively on uninfected people, and we have 
largely ignored those who are already infected.
    Let me be clear. I am not advocating laws or policies that 
criminalize or stigmatize HIV positive people, or their 
behavior. I am talking about interventions that help HIV 
positive people reduce their risk behaviors and protect their 
partners from infection.
    Among the Titles of the CARE Act, Title IV has had the most 
emphasis on integrating HIV care and prevention. At my Title IV 
project in Philadelphia, for example, reproductive health 
specialists, funded by Title X of the Public Health Service 
Act, see HIV positive women in care, to provide contraceptives, 
screening and treatment for STDs, and counseling regarding HIV 
and STD prevention. This kind of integration and integrated 
approach should be replicated throughout CARE Act programs.
    As you know, one of the true success stories in this 
epidemic has been the effort to reduce the number of children 
who are born with HIV. H.R. 4807 includes many new provisions 
to help in this battle; three, to be exact.
    First, it will authorize an additional $20 million for 
States' activities related to reducing perinatal HIV 
transmission. There is no mandatory anything in this bill. 
These funds are available to all States; those that provide 
mandatory HIV testing for newborns whose mother's status is 
unknown, and other States, with significant perinatal HIV 
transmission rates.
    Second, an IOM study will be commissioned to conduct an 
analysis of State efforts to make recommendations to States on 
future steps to reduce perinatal transmission.
    Third, the Secretary is directed to expand and coordinate 
efforts at NIH and FDA to develop rapid HIV tests. Accurate and 
affordable rapid HIV tests would help diagnose pregnant women 
whose HIV status is not known at the time they are in labor.
    AIDS Alliance is supportive of these efforts to ensure that 
the reauthorized CARE Act helps States and communities to build 
on the success in reducing perinatal transmission. Science has 
given us the tools. States must be encouraged to use them.
    Finally, reversing the Nation's complacency about AIDS is a 
daunting task; 40,000 new infections, over 100 per day, is 
intolerable.
    Do we really have a war on AIDS in this country? If we had 
40,000 American casualties in a war, would we find that 
acceptable? I think not.
    The time has come for us to muster the vision, resources, 
and courage to give Americans infected with HIV the best care 
our country can provide, and to truly end the spread of this 
epidemic.
    Thank you.
    [The prepared statement of Dorothy Mann follows:]
Prepared Statement of Dorothy Mann, Executive Director, Family Planning 
   Council, on Behalf of AIDS Alliance for Children, Youth & Families
    Mr. Chairman and members of the subcommittee, good afternoon. My 
name is Dorothy Mann, and I am Executive Director of the Family 
Planning Council serving Philadelphia and the four surrounding 
counties. The Family Planning Council provides STD, HIV, and family 
planning services to over 107,000 clients annually. It is also my honor 
to belong to the HIV Community Planning Group in Philadelphia and the 
CDC's HIV/STD Prevention Advisory Committee.
    My organization is the lead agency of a community network, known as 
the Circle of Care, which provides comprehensive health and support 
services to HIV-positive children, youth, women, and their families. 
This program is principally funded through Title IV of the Ryan White 
CARE Act, and receives additional support from Titles I and II of the 
CARE Act and private sources.
    I am here today representing AIDS Alliance for Children, Youth & 
Families, formerly known as AIDS Policy Center. AIDS Alliance is a 
national organization that addresses the needs of children, youth and 
families who are living with, affected by, or at risk for HIV and AIDS. 
Among our members are organizations and individuals that provide or 
receive services under Title IV of the Ryan White CARE Act. Our board 
of directors is comprised of people living with HIV and their family 
members, as well as HIV service providers, researchers, and policy 
experts.
    I want to begin by thanking the members of this committee for your 
ongoing support of the Ryan White CARE Act and for your work to 
reauthorize the Act. I cannot emphasize enough the importance of 
reauthorizing the Ryan White CARE Act this year. Every day throughout 
this nation, the CARE Act is saving the lives of children, young 
people, and adults with HIV. By renewing this program, you will also 
help to renew our nation's commitment to people living with HIV.
    With the 13th International Conference on AIDS currently taking 
place in Durban South Africa, the nation hardest hit by the AIDS 
pandemic, our awareness of the global AIDS crisis has never been 
greater. While it is clear that the rates of transmission are highest 
in Sub-Saharan Africa, one message that has been lost here at home. 
Here in the United States it has almost become acceptable that 40,000 
people are newly infected with HIV each year. Today, I will focus my 
remarks on the critical importance of incorporating prevention messages 
into care because unless we change how we approach this epidemic, 
another 40,000 people will be infected with HIV next year, too.
    My remarks also focus on why HIV-positive children, youth, women 
and their families still need the Ryan White CARE Act, and how the CARE 
Act can be strengthened for the future.
HIV/AIDS: A Continuing Crisis
    The HIV/AIDS epidemic continues to have a devastating impact on 
children, youth, women and their families in the United States. As 
someone who has been working in this field since the early days of the 
epidemic, I can tell you that the need for the CARE Act has never been 
greater.
    As you know, one of the true success stories in this epidemic has 
been the effort to reduce the number of children who are born with HIV. 
From 1994 to 1999, the number of pediatric AIDS cases resulting from 
mother-to-child HIV transmission fell by 78%. This remarkable decrease 
is the result of efforts to diagnose HIV-positive pregnant women and 
provide treatment to them and their newborns.
    However, the number of women and youth who are infected with HIV in 
this country continues unabated. Between 120,000 and 160,000 women are 
living with HIV in the United States, and the proportion of new AIDS 
cases attributed to women tripled from 7% in 1985 to 23% in 1999.
    Young people are particularly hard hit by HIV. People under age 25 
account for at least half of the 40,000 new HIV infections in the U.S. 
each year, and those under age 22 account for one-quarter of new 
infections.
    Unfortunately, new data released just this week at the 
International AIDS Conference in South Africa has confirmed that these 
dramatic declines have leveled off, partly because the new treatments 
stop working for many patients over time. Research also shows that many 
people, including women and youth, are continuing to engage in 
behaviors that put them at risk for HIV. So, it is abundantly clear 
that, for the next five years at least, the number of people needing 
services under the Ryan White CARE Act will continue to increase, as 
will the cost and complexity of the services they require.
    Some people have wrongly concluded that, as fewer children are born 
with HIV infection, fewer resources are needed for pediatric and 
maternal HIV/AIDS services. In fact, as the death rate among children 
with AIDS goes down, more children than ever before are living with HIV 
and AIDS and are in need of comprehensive services. Members of the 
subcommittee, in our excitement over the declining rate of new HIV 
infections among children, we must not abandon those children who are 
already living with the disease. In addition, it will be a challenge to 
continue to reduce perinatal transmission as the number of HIV-infected 
women of childbearing age keeps rising. More resources are required to 
provide HIV-positive pregnant women with prenatal care, HIV counseling 
and testing, and access to treatment to improve their health and reduce 
perinatal HIV transmission.
Proposed Emphasis on HIV Prevention and Care
    Before taking time to discuss some background information and the 
specific provisions of H.R. 4807 related to women, children, youth and 
families, I would like to take a moment to commend its emphasis on 
making HIV prevention an integral component of care for HIV-positive 
people. The Ryan White CARE Act is not a substitute for the HIV 
prevention programs based at CDC. But the CARE Act does have an 
important role to play in helping to stem the spread of this disease.
    It goes without saying that HIV is spread from an infected person 
to an uninfected person. But we have focused HIV prevention efforts 
almost exclusively on uninfected people, and we have largely ignored 
those who are already infected.
    I am a member of the HIV prevention planning group in Philadelphia. 
In the 1999 prevention plan that we developed and CDC approved, HIV-
positive individuals are not designated as a priority population. In 
fact, out of every hundred dollars that is spent on HIV prevention in 
Philadelphia, only two dollars and eighty-four cents is directed 
specifically towards HIV-positive people.
    Ignoring the prevention needs of HIV-positive individuals has led 
to serious consequences. There is mounting evidence that as people with 
HIV are living longer and more active lives, they are more likely to 
engage in unprotected sex. I understand that the San Francisco 
Department of Public Health recently determined that, in that city, you 
are most likely to have gonorrhea if you are an HIV-positive man who 
has sex with men, if you are on combination therapy for HIV, and if you 
have a high CD4 count. If these HIV-positive men are getting gonorrhea, 
that means they are having unprotected sex that can also result in HIV 
transmission.
    Let me be clear: I am not advocating laws or policies that 
criminalize or stigmatize HIV positive people or their behavior. I am 
talking about interventions that help HIV-positive people reduce their 
risk behaviors and protect their partners from infection.
    What can be done about this problem? We must work to break down the 
walls between HIV prevention and care programs. One way to accomplish 
this goal is for CARE Act-funded programs to bring appropriate 
prevention interventions into the care setting, in coordination with 
programs funded by CDC and SAMHSA.
    Among the titles of the CARE Act, Title IV has had the most 
emphasis on integrating HIV care and prevention. At my Title IV project 
in Philadelphia, for example, reproductive health specialists see every 
HIV-positive woman in care to provide contraceptives, screening and 
treatment for STDs and counseling regarding HIV and STD prevention. 
This kind of integrated approach should be replicated throughout the 
CARE Act programs.
    CARE Act programs must also contribute to efforts to increase the 
number of HIV-positive people who know their HIV status. It is 
estimated that between one-third and one-half of HIV-positive people do 
not know that they are infected. We need to expand outreach to high 
risk individuals so that they can be offered HIV testing and linked to 
comprehensive care that includes HIV prevention.
Ryan White Title IV: A Success Story
    Clearly, the HIV/AIDS epidemic continues to have a terrible impact 
on children, youth, women and their families in communities all across 
America, including my own. But with your support, the Ryan White CARE 
Act has equipped local communities to face this crisis. And Title IV of 
the CARE Act has helped to lead the way.
    Title IV provides grants to public and private nonprofit 
organizations to develop and sustain comprehensive, coordinated systems 
of HIV care and services for low-income children, youth, women and 
families. As a competitive grant program, Title IV targets federal 
funds directly to communities in greatest need and to providers that 
are well qualified to meet the unique needs of these populations.
    The comprehensive HIV services provided by Title IV includes 
medical care, social services such as case management, and access to 
clinical research programs. These services are provided through a model 
known as ``family-centered care,'' which means that care and services 
are built around the needs of whole families affected by HIV.
    Title IV currently funds 58 grantees in 26 states, the District of 
Columbia and Puerto Rico, and these grantees provide or arrange for 
direct HIV services at several hundred clinical sites. These grantees 
are enrolling--and retaining--extremely vulnerable populations in care. 
In 1998, over 37,000 children, youth, women, and their family members 
received ongoing services through Title IV. The number of people in 
need of Title IV services continues to grow each year. From 1996 to 
1998 alone, client enrollment in Title IV programs increased by 23%.
    Title IV and Perinatal Transmission. Title IV has played a major 
role in helping to reduce the rate of perinatal HIV transmission in the 
United States. Title IV projects reduce perinatal transmission by 
providing outreach, counseling, and testing to high-risk women and 
health care to pregnant women and their children. The recent Institute 
of Medicine report on efforts to reduce perinatal HIV transmission 
identified the key role that Title IV projects have played in this 
effort. The report also recommended that the existing infrastructure 
for providing perinatal HIV prevention and treatment should be 
strengthened by building on the Title IV service network.
    Title IV and Youth. Title IV projects are also at the forefront of 
the national effort to engage and retain HIV-positive young people in 
comprehensive care. Since 1995, the number of teens and young adults 
served by Title IV has more than doubled. Title IV projects have been 
particularly successful at reaching young women of color, one of the 
fastest-growing HIV risk groups in the nation. In 1998, the Title IV 
Adolescent Initiative was established to increase the number of HIV-
positive youth receiving primary medical care and support services in a 
youth-sensitive environment. This initiative currently provides funding 
to five model youth programs.
    In addition, the Title IV program has collaborated with NIH to 
establish the REACH project, a research program that is studying the 
medical, psychosocial, and behavioral aspects of HIV in adolescents. 
With approximately 350 teens enrolled at 15 sites across the country, 
the REACH project is the source of much of what is known about HIV 
disease in adolescents.
    People of color. Title IV continues to lead the CARE Act in 
reaching people of color. In 1998, 82% of all Title IV clients were 
people of color, reflecting a continued increase in the number and 
proportion of clients who are African American or Latino. From 1997 to 
1998 alone, the number of African American clients served by Title IV 
increased by 16%, and the number of Latino clients increased by 20%.
Proposed Changes to Title IV
    Let me now turn to some of the specific provisions of H.R. 4807, a 
bill to reauthorize the CARE Act that was recently introduced by Dr. 
Coburn along with 22 co-sponsors in the House. The bill proposes 
several important modifications to Title IV, all of which are supported 
by AIDS Alliance. Most notably, the bill will strengthen the unique 
mandate of Title IV to facilitate client access to HIV-related clinical 
trials and other research. Not only will the bill help to promote 
collaboration between Title IV grantees and NIH-funded AIDS research 
projects, but it also will preserve the right of patients to choose 
whether or not to enroll in research protocols.
    The bill will also ensure that the Title IV program continues and 
expands its efforts to engage and retain HIV-positive youth in care. 
However, since Title IV accounts for just 3% of CARE Act funding, and 
young people make up at least half of all new HIV infections, Title IV 
cannot accomplish this task alone. That is why AIDS Alliance 
enthusiastically supports a modest, but important, provision in H.R. 
4807 that will require Title I and II grantees to demonstrate that they 
are allocating an appropriate share of funds towards youth services.
Proposed Changes Related to Perinatal Transmission
    H.R. 4807 also includes three new provisions related to reducing 
perinatal HIV transmission. First, it will authorize an additional $20 
million for state activities related to reducing perinatal HIV 
transmission, such as outreach and linkage to care for HIV-positive 
pregnant women.
    Second, an IOM study will be commissioned to conduct an analysis of 
state efforts to reduce perinatal HIV transmission, and to make 
recommendations to states on future steps to further reduce perinatal 
transmission.
    Third, the Secretary will be directed to expand and coordinate 
efforts at the NIH and FDA to develop rapid HIV tests. Accurate and 
affordable rapid HIV tests would have many potentially important uses, 
one of which would be to help diagnose pregnant women whose HIV status 
is not known at the time of labor.
    AIDS Alliance is supportive of these efforts to ensure that the 
reauthorized CARE Act helps states and communities to build on the 
success in reducing perinatal transmission.
    In closing, I would like to urge you once again to reauthorize the 
Ryan White CARE Act this year. Communities across the nation, including 
my own, are seeing an increase, not a decrease, in the number of people 
who need HIV care, treatment and support services from the CARE Act. 
This program is the cornerstone of our nation's response to AIDS, and 
it must continue.
    Let me leave you with a final thought. Reversing the nation's 
growing complacency about AIDS is a daunting task. But we must do 
more--much more--than simply prevent an escalation in the HIV infection 
rate of 40,000 new cases each year. Forty thousand infections, over 100 
per day, is intolerable. Do we really have a war on AIDS in this 
country? If we had 40,000 American casualties in a war, would we find 
that acceptable? I hardly think so. The time has come for us to muster 
the energy, resources and courage to truly end the spread of this 
terrible epidemic.
    Thank you for your time. I would be happy to answer any questions 
you may have.

    Mr. Bilirakis. Thank you so much, Ms. Mann.
    Mr. Colon.

                   STATEMENT OF JOSE F. COLON

    Mr. Colon. Buenos tardes, Chairman Bilirakis, Congressman 
Coburn, Congressman Waxman, and members of the committee. 
``Saludos'' means greetings in Spanish, but it is also related 
to the word ``salud,'' which means health.
    My name is Jose Fernando Colon. I live in San Juan, the 
capital of Puerto Rico. I am part of a group called ``Pacientes 
de SIDA pro Politica Sana.'' I live with HIV.
    I am here today hopeful of receiving bipartisan support 
within the scope of your power as legislators and policymakers 
on the serious repercussions over the lives of AIDS patients, 
that the criminal embezzlement and fraudulent use of Federal 
funds earmarked for services not rendered has had over those 
affected HIV/AIDS in Puerto Rico, and in the continental USA, 
as well.
    Since March 11, 1999, ``Pacientes de SIDA pro Politica 
Sana'' has been working as an HIV organization in reaction to 
the fraud committed at the San Juan AIDS Institute by its 
former directors and administrators.
    Our goal and first priority is to empower HIV/AIDS 
patients, loved ones and/or significant others to make sure 
that the information revealed during the Federal judicial 
proceedings in the case of USA versus Kouri, Sotomayor, Borel; 
and also, USA versus Luis E. Cubon and Jorge Garib should serve 
as an international soundboard so that something similar is 
never repeated.
    $2.2 million was embezzled for personal and political use, 
as was reflected by the plea of guilt of five of the accused, 
and the convictions of Kouri, Sotomayor, Borel, Dubon, and 
Garib.
    Most of these persons were prominent lawyers, accountants, 
and sad to say, doctors. Revealed during the testimony of the 
case were horrifying facts such as the box full of over 
$100,000 in cash that was delivered to a former Vice President 
of the House of Representatives to finance a political 
campaign.
    Credit cards with per year expenditures of approximately 
$19,000 and $20,000 used in restaurants and happy occasions 
were used by the administrator and a so-called doctor Kouri, 
who masterminded the whole fraud.
    Money intended for patients was used to pay for maids, 
luxury cards, cocktail parties, trips, and a $47,000 press 
conference. What were they giving out, Mont Blanc, Cartier, or 
Tiffany pens? A van destined to carry patients to and from 
medical facilities was painted over and used in a political 
campaign.
    I personally know a grandfather, who joined us in our 
demonstrations, that not only lost his daughter, but his 
granddaughter, as well, while all of this was happening.
    I also know a grandmother that went through the same loss. 
She cries every time she calls me, and repeats over and over 
again that nobody helped them.
    One day, I was with Aramis, my companion that passed away. 
I remember that at the hospital, a bill that cost us $53,000, 
which we were able to pay only because of beneficence, a Dr. 
Jorge Garib, an infectologist, came in, opened the curtain in 
the room, and asked my partner's name. When he said who he was, 
he simply told him, cold as ice, ``Do you know that you have a 
pneumonia that kills?''
    His mother and I looked at each other perplexed, and saw 
the pain and outrage on my partner's face. Aramis could have 
had more years of life, quality life, if this had not happened.
    Today, this morning, today, the same doctor is being 
sentenced in San Juan, because he was part of the party.
    But it is sad to say that it was through a Puerto Rican 
woman's accusation that all of this justice has been done. 
Where were the authorities? What were they doing? How much 
suffering would have been spared if audits and reports had been 
done by the Federal authorities that disbursed the funds? Where 
was HRSA?
    Among those who accepted guilt is former Senator and former 
Head of the Health Commission of the Senate, Dr. Edgardo 
Rosario Burgos.
    Top elected officials have been implicated in the 
mishandling of the funds by various witnesses presented by the 
U.S. Government, one of which was even wired by the FBI to 
document the convicts' statements to this effect.
    Some of the politicians mentioned during the trial have 
been Mr. Hector Luis Acevedo, former Mayor of San Juan; Jose 
Granados Navedo, a former Vice President of the House of 
Representatives; and our present Governor, Dr. Pedro Rossello.
    With me, and as part of my written testimony, I have a copy 
of a letter written in 1993 to the Secretary of Health, Donna 
Shalala, telling her that all of this was happening, and 
nothing happened. In our quest for truth, we asked Mr. David 
Walker, Comptroller General of the General Accounting Office, 
to conduct an audit, so that the public is reassured of the 
appropriate use of funds.
    We also again asked Honorable Donna Shalala for an 
explanation of why, between the years 1988 and 1994, there were 
no audits or reports made to the Federal Government. This was 
stated in testimony in court, by Mr. Lawrence R. Pool, an 
official from HRSA, that said, ``There are no indications that 
such reports were ever prepared.''
    I want to quote the words said to me in a conference call 
by Mr. Douglas Morgan, another official from HRSA, that ``Some 
mistakes had been committed.'' When I asked what mistakes and 
by whom, I got only silence as an answer.
    This is continually happening, not only in Puerto Rico, I 
assure you, but in other parts of the United States. In Puerto 
Rico, we are having many problems, including a health reform 
that we do not know if it is going to work and how is it going 
to affect AIDS patients.
    We have the constant bombarding of Vieques, where 51 HIV/
AIDS patients live. I do not know how they can do it, because 
it is difficult living outside of Vieques. So can you imagine 
having AIDS there?
    In that context, we welcome all your efforts to guarantee 
the proper tools through this act, the Ryan White CARE Act, 
H.R. 4807, to provide clear tools of accountability. These are 
tools that will help those patients like me to be part of the 
planning councils, to become voices; not just people that 
receive salaries. Some of these salaries are absolutely 
immoral.
    We want to clearly state that whatever investigations or 
audits that are done in the accountability measures that you 
take, they should never, never go against the good faith of the 
organizations of people that have really worked.
    Fund cutting is not the issue here. Our dilemma is the 
proper use and accountability of funds. To do this, we need 
your help.
    AIDS does not discriminate. I have seen the situation with 
San Francisco, and the discussion between Ms. Eshoo and Mr. 
Coburn, in regards to the funds in San Francisco, and this and 
that. That sounds to me like a lot of bureaucratic talk.
    What we really need is to get down to business and listen 
to the patients. Get those tools for accountability, and think 
about people like my brother that died, my cousin that died, my 
friend, my companion.
    This is not easy for me. My T-cells must be going really 
down, right now. But I have to do what I have to do, to make 
you see the reality that we have gone through. It is a 
grotesque reality.
    We have to get this message clear to those people that 
still do not believe that HIV and AIDS can touch them. That is 
prevention.
    Dr. Coburn, I agree with you. We do have to have 
prevention. We have to have prevention, but we have to have 
accountability on those funds, so that these thieves are 
stopped, no matter how high the position.
    Please listen to my voice. It is the voice of a lot of 
people. I represent a lot of people that are out there. They 
are, as I am, clinging ferociously to life.
    Thank you very much.
    [The prepared statement of Jose F. Colon follows:]
Prepared Statement of Jose F. Colon, Coordinator, Pacientes de SIDA Pro 
                             Politica Sana
    Dear Sirs and Madams: ``Saludos'' to all committee members. The 
word ``saludos'' translates to greetings, but it also is related to the 
word ``salud,'' which means health. My name is Jose Fernando Colon and 
I live in San Juan, capital of the Commonwealth of Puerto Rico, co-
founder of the organization ``Pacientes de SIDA pro Pol!tica Sana.'' I 
live with HIV.
    I am here today hopeful of receiving bipartisan support, within the 
scope of your power as legislators and policy makers, on the serious 
repercussions over the lives of AIDS patients that the criminal 
embezzlement and fraudulent use of federal funds earmarked for services 
not rendered, has had over those affected by HIV/AIDS in Puerto Rico 
and in the continental US as well. I can mention cases in Orlando, 
Dallas and Los Angeles.
    Since March 11, 1999, ``Pacientes de SIDA pro Politica Sana, 
Inc.,'' (Aids Patients for Sane Policies), has been working as an HIV/
AIDS patients organization in reaction to the fraud committed at the 
San Juan AIDS Institute by its former directors and administrators.
    Our goal and first priority is to empower HIV/AIDS patients, loved 
ones and/or significant others to make sure that the information 
revealed during the federal judicial proceedings in the case USA vs. 
Kouri, Sotomayor, Borel, and also USA vs. Luis E. Dubon and Jorge 
Garib, (Case # 97-091, JAF), should serve as an international 
soundboard so that something similar is never repeated.
    $2.2 millions were embezzled for personal and political use, as was 
reflected by the plea of guilt of five of the accused and the 
convictions of Kouri, Sotomayor, Borel, Dubon and Garib. Most of these 
persons were prominent lawyers, accountants, and sad to say, doctors. 
Revealed during the testimony of the case horrifying facts such as box 
full of over $100,000.00 in cash was delivered to a former vice-
president of the House of Representatives to finance a political 
campaign. Credit cards with per year expenditures of approximately 
$19,000 in one credit card and more than $20,000 in another for 
restaurants and happy occasions were used by the administrator of the 
Institute and a so called doctor who masterminded the whole fraud.
    Money intended to patients has been used to pay for maids, luxury 
cars, cocktail parties, trips, thrills and a $47,000.00 press 
conference. What were they giving out Mount Blanc, Cartier or Tiffany 
pens?
    A van, destined to carry AIDS patients to and from medical 
facilities, was painted over and used in a political campaign. I 
personally know a grandfather, who joined us in our demonstrations, 
that not only lost his daughter but his granddaughter while all of this 
was happening. I also know a grandmother that went though the same 
loss. She cries every time she calls me and repeats over and over again 
that nobody helped them.
    One day I was with my partner Aramis, who passed away nine years 
ago. I remember a day when at the hospital, (a bill that cost 
$53,000.00, which we were able to pay only because of beneficence), Dr. 
Jorge Garib, an infectologist, opened the curtain in the room, asked my 
partners name, and when he said it was he, he simply told him, cold as 
ice: ``do you know that you have a pneumonia that kills?.'' His mother, 
and I looked at each other perplexed and saw the pain and outrage in my 
partner's face. Aramis could have had more years of quality of life. 
These years were denied to him. Today, in this precise moment that 
infectologist is being sentenced in a courtroom in San Juan. He was 
part of the party. I have waited nine long years for this day, and I am 
thrilled to be able to be here to let you know. But it is sad to say 
that it was through a Puerto Rican woman's accusation that all of this 
justice has been done. Where were the authorities? What were they 
doing? How much suffering would have been spared if audits and reports 
had been done by the federal authorities that disbursed the funds?
    The case San Juan Aids Institute case was conducted at Hon. Judge 
Jose A. Fuste's courtroom at the Federal Courthouse, District of Puerto 
Rico. The US District Attorney's Office for Puerto Rico, directed by 
Hon. Guillermo Gill, received full support from Hon. Janet Reno, US 
Attorney General, who stated that the case should continue no matter 
who is implicated.
    Amongst those who accepted guilt is former Senator and former head 
of the Health Commission of the Senate, Dr. Edgardo Rosario Burgos.
    Top elected officials have been implicated in the mishandling of 
the funds by various witnesses presented by the US Government, one of 
which was even wired by the FBI to document the convict's statements to 
this effect. Some of the politicians mentioned during the trial have 
been Mr. Hector Luis Acevedo, former Mayor of San Juan, Jose Granados 
Navedo, a former member and former vice-president of the House of 
Representatives, who had to resign to his post due to the pressure 
created by the scandal, and finally Dr. Pedro Rossello, our current 
Governor.
    With me and as part of my written testimony I have a copy of a 
letter written in 1993 to Secretary of Health Donna Shalala by former 
Representative David Noriega asking her to investigate. Noriega had to 
push an investigation in the House of Representatives because Shalala's 
letter simply answered that they look into it. However no results or 
actions were taken.
    In our quest for truth, we asked Mr. David Walker, Comptroller 
General of the General Accounting Office, to conduct an audit so that 
the public is reassured of the appropriate use of funds.
    We also asked Hon. Donna Shalala, Secretary of Health and Human 
Services, for an explanation of why auditors did not detect this fraud 
before. Funds were disbursed for various years, (1988-1994), without 
the proper protocols and financial reports, as testified by Mr. 
Lawrence R. Poole, an official from the Department of Health and Human 
Services, and reported by the press:--``there are no indications that 
such reports were ever prepared.''
    I want to quote the words said to me in a conference call with Mr. 
Douglas Morgan an official from HRSA, when I asked him what had 
happened. He told me that ``some mistakes had been committed,'' and 
when I asked what mistakes and by whom, I only received silence as an 
answer. Why so much silence from the people that are responsible of 
following up the destination of funds and their proper use?.
    Since the ending of the second part of the case we have encountered 
the fact that at least three more organizations in Puerto Rico are 
being investigated by a Grand Jury. The Health Secretary of the 
Commonwealth of Puerto Rico, Mrs. Carmen Feliciano, was called to stand 
no more than three weeks ago in regards to the ongoing investigation of 
an organization called ``Oasis de Amor.'' Besides, PRConcra, an 
organization that serves the gay community, and ``Fundacion Ayudanos a 
Vivir,'' an organization which closed, and used to give services to 
infants, are also being investigated. All of this in the midst of a 
health reform that still has a lot of matters to be polished, and 
raises questions about its implementation.
    Besides as you must know we have a problem with the island 
municipality of Vieques were fifty one HIV/AIDS patients have to live 
under a bombardment that for over sixty years has destroyed the 
island's ecology and environment. This destruction has been so strong 
that Vieques has one of the highest cancer rates in all Puerto Rico. 
Imagine having AIDS there.
    We welcome all your efforts to guarantee the proper tools for a 
sane accountability of federal funds, (Ryan White Funds, HR #4807), 
provided for the treatment of HIV/AIDS. I thank Congressmen Coburn and 
Waxman for including some accountability measures in the House of 
Representative's version of the act. We support random federal audits 
of HIV/AIDS service providers, increased patient participation in the 
planning process, particularly those that who are real clients and not 
just employees of groups receiving Ryan White funds. We also applaud 
increased training for new Ryan White Council members, and sunshine 
laws guaranteeing planning meetings under public scrutiny.
    We want to clearly state that in no way should these investigations 
jeopardize the excellent work that other good faith organizations and 
their members have done in the past in regards to patients' health care 
and services. Fund cutting is not the issue here, our dilemma is the 
proper use and accountability of funds.
    We are determined to follow the AIDS Institute case, and any other 
similar cases, to its final consequence. We will work as watchdogs of 
HIV/AIDS funds and services. Tools of accountability will help our 
effort. We believe that some loose ends are still in the air and that 
all those that are guilty should pay for their crimes, no matter how 
high their rank, position, political affiliation was, or is. To do this 
we need your help.
    Because AIDS does not discriminate by political affiliation we must 
insist in bipartisan action to protect the lives of all. Not doing so 
will open the gates to the continuation of the devastation, pain and 
sorrow caused by HIV/AIDS.
    I live everyday with the virus. The person that represents my hope 
and joy does also. Nine years ago I lost my companion Aramis, after 
seventeen years of companionship. I have lost my brother Eddie and my 
cousin Michael, besides a number so high of friends that it is 
difficult for me to count them. It is not easy for me to be here. My T-
Cells must be dropping by the second. But I have to do what I have to 
do to push for remedies to the sad and grotesque reality that I, and 
many others, have lived.
    The Ryan White Care Act is a light of hope for all of us. United we 
must fight to stop and delete forever the disease of HIV/AIDS. We claim 
to all those concerned to be as human as they can be in this effort, so 
the impact of our message reaches the hearts and minds of thousands 
that still ignorantly believe that HIV/AIDS has nothing to do with 
them.
    We ask you to pass this bill assuring us that there will be greater 
efforts towards accountability of funds and human resources; and 
please, let us work together to stop nepotism.
    HIV/AIDS should not be an industry. I pray for the day that many 
people will have to look for other jobs because the fight against HIV/
AIDS will be over. Tragically some people do not see it this way. 
People must sacrifice to fight this disease and stop receiving salaries 
so high that they have become immoral. Only through giving from the 
heart we are going to win this battle. Please listen to my voice. It 
represents the voice of many like me who cling ferociously to life. 
Thank you very much for letting me speak.

    Mr. Bilirakis. Thank you so much, Mr. Colon.
    Mr. Jackson.

                  STATEMENT OF EUGENE JACKSON

    Mr. Jackson. Mr. Chairman and members of the Subcommittee 
on Health and Environment, good afternoon.
    My name is Eugene Jackson. I am, since yesterday, the 
Deputy Executive Director for Policy and Community Development 
at the National Association of People with AIDS [NAPWA]. Prior 
to joining NAPWA, I served as the Executive Director of Project 
Connect, an AIDS service organization in Jackson, Mississippi.
    First and foremost, Mr. Chairman, I am a person living with 
HIV since 1985. I am here to tell you that the Ryan White CARE 
Act works. From a personal and professional perspective, I can 
tell you that programs supported by the CARE Act funds are 
saving lives. CARE Act programs have been instrumental in 
building the capacity of communities all across this Nation to 
respond to the HIV epidemic.
    I am a CARE Act success. In January 1998, I spent 46 days 
in the hospital, starting off with a sinus infection, and 
resulting in end-stage renal disease secondary to an HIV 
infection. My hospital bill was more than $85,000 alone, not 
including physician fees and other services.
    Even though prior to my admission I was a practicing 
attorney, I could not get health insurance, because I was HIV 
positive.
    On discharge, my outpatient prescription bill was more than 
$1,500 per month. Thanks to Title II of the CARE Act, I was 
able to receive my medications through the AIDS Drug Assistance 
Program [ADAP].
    Notwithstanding the fact that I was considered medically 
disabled in 1996 and qualified for disability, my Medicare 
insurance did not go into effect until December 1998. 
Nevertheless, Medicare does not provide prescription drug 
coverage.
    Thanks to ADAP under Title II of the CARE Act, I was 
provided my most expensive medications. Because of the 
assistance I received under the CARE Act, I am now working 
full-time in the private sector with private health insurance 
and a prescription drug plan.
    Title II of the CARE Act helped me when I needed it most, 
and allowed me to once again become a productive member of my 
community while living with HIV disease.
    As you continue your work to reauthorizing the Ryan White 
CARE Act, NAPWA commends you in striving to adopt the act to 
demographics shifts in the epidemic, particularly in addressing 
the needs of historically under-served and vulnerable 
populations.
    NAPWA provides a national voice for all people living with 
HIV. Our mission is to advocate on behalf of all people living 
with HIV, in order to end the pandemic and the human suffering 
caused by HIV and AIDS.
    From this perspective, I applaud the efforts to distribute 
additional resources across the country. Coming from rural 
Mississippi, I know first-hand the challenges of living with 
HIV and providing services in under-resourced communities.
    While we may not have the large number of cases as large 
urban areas, people living with HIV in rural and under-served 
areas have no fewer service needs. In fact, persons in 
Mississippi depend on the services provided by the CARE Act 
more so than several other States, as our State legislature has 
only appropriated $750,000 for HIV and AIDS. Some States 
provide no funding for HIV care and services.
    In other heavily impacted parts of the country, the HIV 
community has spent the past 10 years building a Ryan White 
care infrastructure. I urge you to ensure that this delicate 
infrastructure is protected in any shifts of funding across 
jurisdictions.
    It is critical that we protect the care infrastructure in 
those communities that shouldered the burden of the first wave 
of the epidemic, and continue to serve large numbers of people 
living with HIV.
    Balancing the need to redistribute resources and the desire 
to protect the HIV care infrastructure, as it exists all across 
the country, requires careful consideration.
    In H.R. 4807, we appreciate the establishment of Quality 
Management Programs, and women, infants, children, and youth 
set-asides. But we are concerned about the provision which 
creates a new grant program for States that currently have laws 
that require all newborn infants in the State be tested for 
HIV, or that require that a newborn be tested for HIV, if the 
attending obstetrician for the birth does not know the HIV 
status of the infant's mother.
    Mr. Bilirakis. Please summarize, Mr. Jackson.
    Mr. Jackson. We urge you, instead, to provide additional 
resources to all States, without preference, to implement 
aggressive outreach and education to at-risk women that need to 
know their HIV status, provide safe and confidential testing, 
and then provide them with comprehensive and accessible 
prenatal care to address the issues of prenatal transmission of 
HIV.
    If they choose, States can implement mandatory testing 
laws, but Congress should not provide those States preferential 
treatment.
    Nevertheless, we believe that the interest of people living 
with HIV, who depend on services provided by the CARE Act, 
would best be served with the following modifications.
    Include language under Title II to make planning councils 
mandatory. It is important to the continued success of the CARE 
Act that communities access the needs and set funding 
priorities.
    Mr. Bilirakis. Please summarize. I want you to get your 
point across. Possibly you may not be able to explain in too 
much detail.
    Mr. Jackson. In closing, I thank the committee for the 
opportunity to provide a perspective from people living with 
HIV, who depend on life-saving medical and supportive services 
made possible by the CARE Act.
    NAPWA and the HIV community look forward to working with 
you to reauthorize the CARE Act. I welcome any questions that 
you may have.
    [The prepared statement of Eugene Jackson follows:]
 Prepared Statement of Eugene Jackson, Jr., Deputy Executive Director 
          for Policy, National Association of People with AIDS
    Mr. Chairman, and Members of the Subcommittee on Health and 
Environment, Good morning. My name is Eugene Jackson, Jr. and I am the 
Deputy Executive Director for Policy at the National Association of 
People with AIDS (NAPWA). Prior to joining NAPWA, I served as the 
Executive Director of Project Connect AIDS Service Organization in 
Jackson, Mississippi.
    First and foremost though Mr. Chairman, I am also a person living 
with HIV since 1985. I am here to tell you that the Ryan White CARE Act 
works. From a personal and professional perspective, I can tell you 
that programs supported by the CARE Act funds are saving lives. CARE 
Act programs have also been instrumental in building the capacity of 
communities all across this nation to respond to the HIV epidemic.
Successes
    I am a CARE Act success. In January of 1998, I spent forty-six days 
in the hospital resulting in end-stage renal disease secondary to an 
HIV infection. My hospital bill was more than $85,000 dollars alone, 
not including physician fees and other services. Even though prior to 
my admission I was a practicing attorney, I could not get health 
insurance because I was HIV positive. On discharge my outpatient 
prescription bill was more than $1500 per month. Thanks to Title II of 
the CARE Act, I was able to receive my HIV medication through the AIDS 
Drug Assistance Program (ADAP). Notwithstanding the fact that I was 
considered medically disabled in 1996 and qualified for disability, my 
Medicare insurance did not go into effect until December 1, 1998. 
Nevertheless, Medicare does not provide prescription drug coverage. 
Thanks to ADAP under Title II of the CARE act I was provided my most 
expensive medications. Because of the assistance I received under the 
CARE Act, I am working full-time in the private sector with private 
health insurance and a prescription drug plan. Title II of the CARE Act 
helped me when I needed it most, and allowed me to once again become a 
productive member of my community, while living with HIV disease.
    As you continue your work to reauthorizing the Ryan White CARE Act, 
NAPWA commends you in striving to adapt the Act to demographics shifts 
in the epidemic, particularly in addressing the needs of historically 
underserved and vulnerable populations. NAPWA provides a national voice 
for all people living with HIV. Our mission is to advocate on behalf of 
all people living with HIV in order to end the pandemic and the human 
suffering caused by HIV and AIDS.
    From this perspective, I applaud efforts to distribute additional 
resources across the country. Coming from rural Mississippi, I know 
first-hand the challenges of living with HIV and providing HIV services 
in under-resourced communities. While we may not have the large numbers 
of HIV cases as large urban areas, people living with HIV in rural and 
underserved areas have no fewer service needs. In fact persons in 
Mississippi depend on the services provided by the CARE Act more than 
several other states, as our state legislature has only appropriated 
$750,000 for HIV/AIDS. Some states provide no funding for HIV care and 
services.
    In other heavily impacted parts of the country, the HIV community 
has spent the past ten years building a Ryan White care infrastructure. 
I urge you to ensure that this delicate infrastructure is protected in 
any shifts of funding across jurisdictions. It is critical that we 
protect the HIV care infrastructure in those communities that 
shouldered the burden of the first wave of the epidemic and that 
continue to serve large numbers of people living with HIV.. Balancing 
the need to redistribute resources and the desire to protect the HIV 
care infrastructure, as it exists all across the country requires 
careful consideration. In H.R. 4807 we appreciate the establishment of 
Quality Management Programs, and Women, Infants and Children and Youth 
Set-Asides, but we are concerned about the provision which creates a 
new grant program for states that currently have laws that require that 
all newborn infants in the state be tested for HIV or that require that 
a newborn be tested for HIV if the attending obstetrician for the birth 
does not know the HIV status of the mother of the infant. We urge you 
to instead, provide additional resources to all states, without 
preference, to implement aggressive outreach and education to at risk 
pregnant women about the need to know their HIV status, provide safe 
and confidential testing, and then provide them with comprehensive and 
accessible prenatal care to address the issues of prenatal transmission 
of HIV. States, if they choose to, can implement mandatory testing 
laws, but Congress should not provide those states preferential 
treatment for funding.
    As we analyze H.R. 4807, we also appreciate the supplemental grant 
program for certain states with severe needs, allowing states to use 
funds for therapeutics by purchasing or maintaining health insurance or 
plans that cover a full range of therapeutics; the increases in the 
minimum Title II base award to $500,000 for states with 90 or more 
living cases of AIDS and to $200,000 for states with fewer than 90 
living cases of AIDS; and requiring states to seek comments and conduct 
public hearings as part of the developing a comprehensive plan.
    Nonetheless, we believe that the interest of people living with HIV 
who depend on services provided by the CARE Act would be best served 
with the following modifications. 1. Include language under Title II to 
make planning councils mandatory. It is very important to the continued 
success of the CARE Act that communities assess the needs and set 
funding priorities. 2. Eliminate the infant testing provision. HIV 
testing should be offered to pregnant women so that appropriate HIV 
therapy can be implemented early.
    In closing, I thank the Committee for this opportunity to provide a 
perspective from people living with HIV who depend on the life-saving 
medical and supportive services made possible by the Ryan White CARE 
Act. NAPWA and the HIV community look forward to working with you to 
reauthorize the CARE Act, and I welcome any questions that you may 
have.

    Mr. Bilirakis. Thank you very much, Mr. Jackson, and thanks 
to all of you.
    Ms. White, you, of course, have expressed your strong 
support for the Ryan White Act, and your pride in the fact that 
it is named after Ryan.zI21You say in your testimony, ``It is 
far less expensive to prevent someone from becoming infected in 
the first place, than to care for that person, once they are 
infected.''
    So I would ask you, you have been at this, unfortunately, 
for quite a long period of time. It is fortunate for a lot of 
people, but unfortunate for you. Do you have any 
recommendations on efforts that most effectively prevent the 
transmission of HIV/AIDS?
    Ms. White. I think definitely by encouraging at-risk 
people, at-risk youth to get tested. I think people who are 
sexually active, I think they definitely need to be encouraged, 
through promotional ads, or whatever, to get testing.
    I think by knowing your status, I think that is the most 
likely way of preventing the disease. I mean, I really think 
that is No. 1.
    Mr. Bilirakis. Well, I plead ignorance here. Do you feel 
that after all of these years, where we have been living with 
the scourge of AIDS and what not, that there are people out 
there, at-risk people, who are not aware?
    Ms. White. Oh, yes, especially our youth; I mean, they 
think they are invincible. I have seen the new statistics, that 
some youth are waiting. That is some youth. I think we must 
understand that is some youth. I think there will always be 
sexually active youth.
    I think family plays a big role in that, too. I would like 
to think that everybody had parents as good as maybe I did, but 
that is not the case, and moral values.
    But also at the same time, I think youth are youth. They 
are the most likely to experiment with sex, drugs, and 
sexuality. I think we, as parents, have to be on the lookout 
for that.
    But I think we, as a Nation, have to look out for 
everybody's needs. I think that is looking out for our youth. 
If you are going to be sexually active, then encourage them to 
get tested.
    Mr. Bilirakis. Mr. Liberti, this is sort of a follow-up to 
Ms. White's comments. Since Florida has enacted HIV partner 
notification in reporting, have you seen a reluctance of those 
at risk of HIV to getting tested or treated?
    Mr. Liberti. Mr. Chairman, the short answer is no. We have 
implemented HIV partner notification or at least publicly 
funded patients in 1987, and had 10 years of experience under 
our belt, when we passed HIV reporting, by name, in 1997. So we 
offered our partner notification services to as many reported 
cases as we could.
    For the patients who have volunteered their partners, and 
we have referred their contacts in, just last year, we found 
over 180 new partners in the State of Florida that would not 
have known their HIV status, if it was not for reaching out and 
letting them know. They are quite appreciative of this 
interaction.
    Mr. Bilirakis. So you have not really found any large 
degree of reluctance?
    Mr. Liberti. No, it is a voluntary program. If the public 
health worker or the community worker does their job well with 
the patient and motivates them, the partner notification is 
done, either by public health intervention or by the client.
    That has worked out with the individual client. No one is 
mandated or forced to give up names. That just does not work.
    Mr. Bilirakis. Thank you. Now in terms of the improvements 
made to Florida's programs, now that you have expanded 
reporting to include those diagnosed with HIV, rather than just 
AIDS, your testimony on page 7, your written testimony 
indicates, and again I quote, ``HIV infection reporting has 
clearly shown a significant increase in HIV infection in 
Florida's minority communities.''
    So I guess I would ask you, logically, what was Florida 
able to do, once it had that new data?
    Mr. Liberti. Let me tell a quick story, because I think 
this is very powerful.
    We knew that there was a serious problem in the African 
American community. As soon as we got our first data from HIV 
infection reporting, we went to the Black Caucus in our State. 
They saw the numbers of how severe HIV was penetrating the 
black community.
    I have told this story before. The conversation with our 
black leaders lasted about 10 minutes. They said, ``What can we 
do?'' They went directly into action. They passed a law that 
formed an HIV minority task force. They immediately 
appropriated $750,000 in our budget for an African American 
media campaign that was launched this year.
    So someone might say, well, they knew that it was a problem 
before that. It does not really matter. The point was that that 
was the defining moment when our African American leaders took 
action, and we are pretty proud of them.
    Mr. Bilirakis. Thanks so much, Mr. Liberti. Again, thank 
you for all your great work in this regard.
    Mr. Brown, since you just arrived.
    Mr. Brown. I apologize for not hearing the panel. I had a 
couple of amendments on the House floor. Thank you all for 
coming.
    Mr. Davy, I would like to ask you a question. Having looked 
at your testimony, you said in your written testimony that the 
epidemic is not a changing face of AIDS, but an expanding face 
of AIDS. Tell us what you mean by that, sort of Ohio-specific, 
but nationally, also.
    Mr. Davy. Chairman Bilirakis and Representative Brown, what 
I mean by that is, the epidemic has not gone from the gay 
community to the African American community or communities of 
women. It is still very prevalent in the gay communities. It is 
expanding in African American communities. It is expanding in 
communities of women.
    The male to male transmission in Ohio is still 55 percent 
of the epidemic of new HIV infections. In Columbus, it is over 
60 percent of new infections.
    So what I mean by that is that my concern is that we think 
we might have solved it in one community, and now it has 
changed to another community. But that is not the case. It has 
just expanded to new communities.
    Mr. Brown. Okay, I thank the chairman. I have no further 
questions.
    Mr. Bilirakis. Dr. Coburn.
    Mr. Coburn. I want to clarify something that Mr. Davy said. 
I want to make sure you understand the intention on the 
planning councils is not to preclude anybody who is working in 
an HIV field from being on a planning council.
    But the intention is to make sure that patients who are not 
inside the Beltway, inside the group, people who are actually 
being treated, have a voice on that panel. There is nothing in 
this bill that will limit anybody else from being on that 
planning council.
    But we do say, one third of those seats ought to be 
patients receiving treatment. That is so that we have the 
feedback that is necessary so that we will not have the 
problems that we had in Puerto Rico.
    So there is no intention to exclude anybody who is now 
working in the AIDS service industry, who was a beneficiary of 
Ryan White care funds, from being on the council.
    We are just saying that one third of those have to be 
reserved for patients being treated. So the feedback 
communication loop is there. I hope you understand that that is 
our intent.
    Mr. Davy. Chairman Bilirakis and Representative Coburn, I 
appreciate that. My concern really revolves around making sure 
that the people that are on the planning councils are the ones 
that have the best information they can.
    Oftentimes, what we are finding today is, many of our 
patients are coming to work at our AIDS service organizations. 
There appeared to be a conflict of interest clause in the bill 
that would preclude some of those individuals from serving on 
the planning councils. We just wanted to be sure that is not 
the case.
    Mr. Coburn. That is not our intention, whatsoever.
    I want to go to Mr. Liberti, for a minute. It seems to me 
that your partner notification programs, based on what you just 
said, have been effective.
    Mr. Liberti. Well, I think we have believed in some core 
public health values for quite some time. It took us 5 years, 
for instance, to pass HIV infection reporting in our State. We 
had a healthy debate. We knew we were going to be the largest 
State in the country, at that time. New York has just come on 
board.
    When we advocated for HIV partner notification, we felt 
that it was going to accomplish a couple of things that we were 
not accomplishing; that there were too many people that were 
being tested in public sites, including jails, for instance, 
that were not even finding out their HIV status. This would 
allow the names to be given to public health, so we could 
follow those people.
    We felt there were too many people that were finding their 
HIV status, and not being linked to service. Let me clarify, 
because I think there is confusion around the country on this 
issue.
    When I say ``linked'' I mean linked in a very patient-
specific, timely fashion; not a general referral made to go see 
a doctor.
    Mr. Coburn. I think that is very important that you make 
that point. Those of us who have worked in the public health 
field understand how notification works, and the 
confidentiality surrounding it.
    Mr. Liberti. Right.
    Mr. Coburn. You know, other than an attempted case by a 
worker to expose HIV names in Florida, there has not been a 
significant leak of confidential data in this country. Because 
the public health community, as well as the physician and 
provider community, understands this issue and works hard for 
it.
    When you have a partner notification that would require you 
to go across State lines; in other words, you have a contact 
that needs to be contacted, how do you handle that?
    Mr. Liberti. The present system that we have in place now 
is that the AIDS Program in our State works very closely with 
the Sexually Transmitted Disease Program. Those are the staff 
that are adequately trained to do partnership notification.
    If the contact or suspect, using STD terms, is within our 
State, even across county lines, we have an inner State system 
of transmitting that information.
    Mr. Coburn. I am asking you specifically about out of 
State.
    Mr. Liberti. Right, out of State is usually done by 
reciprocal information. If the State we are going to has HIV 
reporting and a partner notification program, then the 
information is transmitted. They carry out the same follow-up.
    Mr. Coburn. What if they do not have HIV reporting or 
partner notification?
    Mr. Liberti. I believe the case is closed, and there is 
nothing we can do.
    Mr. Coburn. So, in essence, if somebody has HIV, and they 
are in a different State, and that State does not have 
reporting or partner notification, it is just tough. They have 
been exposed, and they have no knowledge that they have an 
exposure. We do not have a way to allow them to know that they 
have an exposure. Is that correct?
    Mr. Liberti. That is correct, under the understanding that 
I have right now.
    Mr. Coburn. Dr. Birkhead, thank you for being here. We 
appreciate all the great work that you all are doing.
    Five years ago, we passed the Baby AIDS Bill here, that was 
not enacted. I mean, it was enacted, but not funded. Your 
Governor supported that. You also passed a similar Baby AIDS 
Bill in New York. Can you tell us, have there been untoward 
consequences; or do you deem that a success? Where are the 
problems?
    Mr. Birkhead. I think it has been successful in a number of 
areas. We did institute mandatory newborn testing of the 
specimens that come to the State lab for metabolic screening, 
back in 1997. Those results were then returned to the mother 
and the pediatrician, a couple of weeks after birth.
    In that initial phase of the program, I think the benefits 
were one, that mom and baby knew about the exposure status, as 
soon as possible. Mom could stop breast feeding.
    Second, the newborn could then be tested by PCR to 
determine infection status. That is very critical, to begin 
heart therapy as soon as possible in a newborn who is infected 
perinatally. Third, the mom then became aware of her status, 
and could seek care for herself.
    I think we recognize that we could be doing better. So last 
summer, we implemented a program of moving that mandatory 
testing into the hospital delivery setting, either with consent 
of the mom or testing of the newborn, through the mandatory 
program.
    The hope there was that we could begin treatment, even 
during delivery or immediately post-partum, to prevent some 
actual cases of transmission.
    So I think with the current program, we could do better if 
we had better rapid tests. That is an issue that we can talk 
about. But I think we are currently identifying all positive 
births in New York, and the benefits are those that I have 
indicated.
    There was concern expressed that women might not seek 
prenatal care or avoid prenatal care. We have not seen evidence 
of that, either through looking at our birth certificate 
process, to look at when prenatal care began, or through 
reviewing charts of positive moms. We have not seen any change.
    A lot of our efforts are now focused on women who have no 
prenatal care. Ideally, you would like to get them tested in 
prenatal care, and not even wait until the delivery setting.
    Mr. Coburn. We would like to get them into prenatal care.
    Mr. Birkhead. Absolutely, and I think we still have about 
10 percent of our women with HIV, who do not get any prenatal 
care. That in-hospital testing then serves as a safety net to 
catch them. But we would ultimately like to get them into 
prenatal care, and we have a number of outreach programs to try 
and do that.
    Mr. Bilirakis. Thank you. We will come back to you, Tom, if 
you would like.
    Ms. Eshoo, to inquire.
    Ms. Eshoo. Thank you, Mr. Chairman, and thank you to all of 
the witnesses at the table for your important and good work; 
and to Mrs. White, thank you for your advocacy that has made a 
difference in our Nation.
    You have certainly paid, as an individual. I do not think 
any parent should ever have to see the day when they bury their 
own child. But what you have done and the dignity with which 
you have done it, you have benefited everyone in this Nation. 
So thank you to you. I pay tribute to you.
    Dr. Birkhead, thank you for your good work. I wanted to 
point out, committee members may not have heard it or read it, 
but on page nine of your written testimony, you say that the 
act should establish hold harmless provisions for Title I and 
II, that will avert drastic reductions and awards, and 
disruptions in services.
    The House bill hold harmless provisions could lead to a 25 
percent reduction in awards to States and cities in the fifth 
year of the reauthorization period. You say, ``We support the 
hold harmless provisions in the Senate bill, which call for 
reductions of no more than 2 percent, per year.''
    Obviously, this is a leading question. But in your 
judgment, tell us why you included that. I still maintain that 
the basis of the Ryan White Act is to bring stabilizing factors 
into each community, whether it is Mississippi, or to a major 
urban center, or any other place in our country. Do you quickly 
want to comment on that?
    Mr. Birkhead. I think our concern just was that whenever 
funding is pulled, it is very disruptive.
    We have had a good experience over the last 5 years with 
continuing increases. If that were to continue the next 5 
years, as we all hope, I think that that would be great, and 
perhaps the point is then moot.
    But I think we are very concerned in the out-years of this 
new reauthorized act, that if funding was not being increased 
in places like New York, and particularly New York City, that 
would be disruptive.
    Ms. Eshoo. Thank you. I think that there is either an 
overtone or an undertone here maintaining that this is strictly 
a San Francisco issue. You are from New York State. So I think 
that your testimony is something that has a great deal of 
weight to it. For the record, I want to say to members that Dr. 
Coburn referenced testimony of W. Shepherd Smith of April 5, 
1995. I have a copy of that testimony that was given before 
this subcommittee. No place in the testimony is there an 
agreement by anyone that there would be a 25 percent reduction.
    I also want to add to the record that in part of that 
testimony, he stated that they were the only AIDS organization 
which openly opposed the Ryan White reauthorization in the form 
that it was put forward, in the previous year. That would be 
1994.
    I would like to go to Janet Heinrich, from the GAO. Has GAO 
done an analysis of the hold harmless provision, and what the 
25 percent cut-back would be, what it would mean?
    Ms. Heinrich. We have not done an analysis of what the 25 
percent cut would mean. What we did is provide information on 
some of the historical perspectives of the Title I funding, and 
looked to see how it was playing out in 1999.
    Ms. Eshoo. Let me ask you this. In looking at the November, 
1996 GAO report, and the one that the committee has today, why 
was the density factor removed in the most current report?
    Ms. Heinrich. I am going to ask Jerry Fastrup to answer 
that.
    Mr. Fastrup. The density factor was included in the Title I 
formula, and was removed in the 1995 reauthorization. Our 
analysis of that density factor, at that time, was that it had 
some very substantial problems with it. The most important one 
being that it did not take into account differences in the size 
of the area.
    So with that density factor, a city in Connecticut, a small 
city and a large city, would wind up getting the same funding, 
even though one may have twice the case load as the other. 
There were some serious problems there.
    Ms. Eshoo. Well, let me just interrupt for a moment, 
because I do not want to have all the time taken with this, as 
much as I would like to pursue it. Maybe we can get you to 
place some of it in writing, as other members are asking for 
questions to be answered in text, rather than verbally, today.
    AIDS cases have gone down in San Francisco, in large part, 
because there are fewer HIV positive individuals that are 
progressing to an AIDS diagnosis. I think that is thanks to the 
quality of access to care, the kind of care that is rendered 
through the care services.
    Is San Francisco being penalized for keeping people 
healthy? Also, if there are smaller increases in newly reported 
AIDS cases, as in the case in San Francisco, why continue to 
rely on the hold harmless provision?
    Mr. Fastrup. I am not sure I understand.
    Ms. Eshoo. Take the first question, first.
    Mr. Fastrup. Give it to me one more time, please.
    Ms. Eshoo. Well, AIDS cases have gone down in San 
Francisco. They have gone down, in large part, because there 
are fewer HIV positive individuals that are actually 
progressing to the full AIDS diagnosis. So there is not only 
good access to care, but there is also quality of care in the 
services.
    Now I think that it could be said, that the area is being 
penalized for keeping people healthy.
    Did you examine any of this in your ultimate analysis, or 
did you just play with numbers? I mean, they are human beings. 
Everyone at this table, even the gentleman from Puerto Rico was 
crying out and saying that there is a human face to all of 
this. There were people left out because someone ripped off 
public dollars. Did you do an analysis of that?
    Mr. Fastrup. The answer is, if AIDS cases are being kept 
alive, they are continuing to be counted as live cases. They 
are continuing to be reflected in the formula, and areas are 
getting funding, based on the number of live cases that they 
have.
    So areas that are successful in keeping people alive will 
continue to receive funding, under these formulas.
    Ms. Eshoo. But not if they live longer than 10 years. Did 
you take that into your analysis, or was there just a cutoff 
point here? Was it just very tidy, in terms of some GAO 
numbers?
    Mr. Fastrup. No.
    Mr. Bilirakis. Without objection, the gentlelady has gone 
better than 2 minutes over her time, but I would grant her an 
additional 2 minutes.
    Ms. Eshoo. Thank you.
    Mr. Fastrup. When the program was reauthorized in 1995, all 
there were, were 10 years of history there. I think it would be 
advisable to reexamine whether or not that time needs to be 
lengthened to 11 or 12 or 13 years. If people are living 
longer, that should be reflected.
    Ms. Eshoo. Well, they are living longer. They are part of 
the care and the services. So I think that there is, if I might 
suggest, a hole in the report, not taking that into 
consideration.
    Mr. Chairman, thank you for the additional time. I 
appreciate it very much.
    Mr. Bilirakis. The other gentleman from Ohio.
    Mr. Strickland. Thank you, Mr. Chairman.
    Mr. Davy, you described the challenges of providing care in 
rural Ohio, and that is what I represent. You support the new 
Title II supplemental grants, which were created in this bill. 
These funds are meant to help States which can demonstrate 
severe need in their efforts to fight HIV/AIDS.
    The House bill makes these funds available in under-served 
areas, whether they are rural or urban. The Senate bill 
restricts these funds to a more narrow class of emerging 
communities. Do you believe the House bill is more desirable?
    Mr. Davy. Chairman Bilirakis, Representative Strickland, 
the Senate bill also has a provision which gives preferential 
treatment to rural communities under Title III, which I believe 
offsets the effect somewhat, of the supplemental Title II grant 
being specifically addressed to. I believe, there were 35, 36, 
37 cities that were specifically named in that bill. So they 
are kind of different in the way that they get at the issue.
    Rural communities are obviously a large problem in access 
to care. Anything that we can do in the CARE Act to strengthen 
access to care in rural communities is certainly a good thing.
    Mr. Strickland. Okay, thank you for that answer.
    You also described that there is an increasing number of 
clients coming to you, who have been in prison, or are now 
living in homeless shelters, many of whom have substance abuse 
and, in some cases, severe mental health problems.
    The Coburn-Waxman bill calls on cities and States to 
promote the coordination of Ryan White services with substance 
abuse programs. It also asks the Secretary to develop a plan 
for improving the delivery of Ryan White services to prisoners.
    Having worked as a psychologist with mentally ill folks, 
and having been in a prison environment, and having served on 
the board of an open shelter, each of these areas of concern 
have particular interest to me.
    Do you think that we need to be doing more to make sure 
that services are extended to those who are the most vulnerable 
in our society? I am talking about prisoners and homeless 
folks.
    I would like to ask you and any other panel members that 
would like to respond, once individuals who may be living in 
open shelters or homeless shelters, or once people who are 
incarcerated in our prisons and jails are identified as being 
HIV positive, are the medications that are very, very costly, 
are these medications being extended to these individuals; or 
are they being somehow treated perhaps differently than other 
persons who may exist within our society?
    Mr. Davy. Chairman Bilirakis, Representative Strickland, 
you know, in our community in Central Ohio, many of the prisons 
still do not acknowledge that there is an HIV/AIDS problem in 
the prisons, let alone that there might be drug use or sex 
going on that could transmit those.
    Mr. Strickland. Can I interrupt you, just for a moment? 
Having worked in the prison for over 8 years, I can tell you, 
HIV exists within our prison system, and sex occurs within our 
prisons. You can continue, please.
    Mr. Davy. I agree, and we know that.
    We, on the Columbus AIDS Task Force, work very extensively 
with other substance abuse providers, mental health providers, 
to try to do good collaborations to maximize the use of our 
Ryan White funds.
    What we have found over the history of this epidemic, and 
the reason that this infrastructure of AIDS has developed, is 
because nobody else wanted to deal with people with AIDS.
    If someone showed up at the door with a mental health issue 
or a drug abuse issue, a homeless issue, and AIDS, AIDS was 
probably fourth or fifth on the list of things that that person 
needed to deal with. But they showed up at our door, because 
nobody else would serve that individual.
    That has changed somewhat, but it is still not fixed. So, 
oftentimes, we are left with having case managers having to 
deal with all of these issues, and trying to work with as many 
other groups as we can.
    Mr. Strickland. I would like, if possible, a response from 
our friend from Florida, in regard to my question.
    Mr. Liberti. Mr. Strickland, I think you are hitting on one 
of the challenges and one of the most complex problems that we 
are dealing with right now.
    To add on to Mr. Davy, that expanding face of AIDS, we have 
3,200 HIV patients in the Florida prison system. I can 
guarantee you, we did not have that number, 10 years ago.
    All the challenges of delivering HIV care, and all the 
release policies, and where is the money for the drugs is a 
major issue. That is a very large population to deal with, that 
the Department of Health and Department of Corrections are 
working on.
    The jails also have an increase of known HIV positives. One 
of the challenges that we deal with, as directors, every day, 
as you know, is that we can not use ADAP money. We can not use 
Ryan White Title II money for the drugs for patients in prisons 
or jails.
    So we have to come up with very creative financing and very 
creative relationships with our Department of Corrections and 
local jails. It is starting to be a much bigger issue than it 
was a few years ago, because people are in and out of the local 
jails. The last thing you want to do is not have them have 
their medications.
    So you have really hit on a very big issue that we are 
dealing with, at the local level.
    Mr. Strickland. Thank you, Mr. Chairman.
    Mr. Bilirakis. I thank the gentleman.
    Mr. Towns, do you have any questions? Please proceed.
    Mr. Towns. Mr. Chairman, you know, I was trying to let you 
move on. But I really have to ask a few questions.
    Dr. Birkhead, you have heard discussion this morning around 
this bill. Do you really feel that this goes far enough, the 
bill itself, in terms of trying to do the kinds of things that 
we trying to do in New York?
    Mr. Birkhead. I think most of the provisions are good for 
New York. There is always the question of funding levels. You 
made the comment earlier about that.
    I think, you know, as ADAP expands, as people live longer 
with HIV, we will need more funding for the drug portion of 
ADAP. But it is really the appropriation levels that you are 
talking about there. I think in the current House bill, most of 
the provisions, we think, are good ones, and will help New 
York.
    Mr. Towns. Are there any other comments on that, from 
anyone, in terms of the structure of the bill that we have been 
talking about this morning?
    [No response.]
    Mr. Towns. All right, thank you very much, Mr. Chairman. I 
do not want to go too far.
    Mr. Bilirakis. Please continue. I did not mean to cut you 
off.
    Mr. Towns. No, that is fine, because when you are out on 
the floor and dealing with legislation, you do miss out on a 
lot. I did not want to go into things that might have already 
been said. But I just did not want to pass up the opportunity 
to at least ask Dr. Birkhead that particular question. Thank 
you.
    Mr. Brown. Mr. Chairman?
    Mr. Bilirakis. Yes.
    Mr. Brown. I would ask unanimous consent to enter into the 
record testimony that was submitted by Mr. Waxman, who is on 
the floor.
    Mr. Bilirakis. Yes, and without objection, that will be the 
case, of course.
    It is just unfortunate that Henry could not get back, 
because the work that he and Dr. Coburn that did on this, along 
with their staffs, Karen and so many others, is just 
extraordinary. I know we are all very grateful.
    Without objection, the Chair yields an additional 3 minutes 
and, hopefully, that will finish us up, to Dr. Coburn.
    Mr. Coburn. Thank you. I would direct everybody to page 51 
of the GAO report. I think, for my friend from California, this 
will answer some questions for her.
    Actually, in the data that was released, just in the last 
few weeks, about increased HIV infection in San Francisco, if 
you look at this new formula, actually San Francisco is going 
to gain, because we are going to do it on the basis of HIV 
infection.
    If you look at the bottom of page 51, what you see is that 
in Washington, DC, 60 percent of the people, or 58.7 percent, 
are HIV positive, but do not have AIDS. But they are not being 
counted to adequately talk about the funding levels for them. 
Whereas, in San Francisco, 48 percent of the cases were AIDS 
versus 52 percent HIV.
    So what we are trying to do is to include them both, and to 
totally reflect it. In fact, this alarming trend that we are 
seeing in San Francisco, in terms of new HIV trends, they will 
be protected, because more of the money is going that way. So I 
think it is real important.
    I want to ask one other question of GAO. Please cut the 
legs out from under this, if I am wrong on this. But it really 
is still fair to say that San Francisco is receiving funding on 
the basis of people who have long ago died from AIDS. Is that 
correct?
    Mr. Fastrup. That is true.
    Mr. Coburn. So if an epidemic is new in a community, and 
let us take any community, and let us say they had exactly the 
same number of people today, alive with either HIV or AIDS, the 
proportion of funding would be drastically different under 
Title I.
    Mr. Fastrup. That is correct.
    Mr. Coburn. That is my only point. Look, I do not want San 
Francisco to receive one penny less. But I do want people who 
are not getting adequate treatment today, to be able to get it.
    Mr. Towns is exactly right. We are going to float this boat 
up. We have 29 percent each year. Nothing has increased in this 
Government in the last 6 years like the Ryan White Act has, 
nothing, and that is going to continue.
    But as we do that, we ought to make sure it is a fair 
distribution. That is what we are trying to address. We are not 
trying to undermine California or San Francisco, and that is 
not my intention. But it is a fair distribution of funds.
    Ms. Mann, first of all, I want to thank you for all your 
work. You are a very dear friend of mine. I have made trips 
into her facilities, and learned a lot, and she has taught me a 
lot.
    I appreciate your comments on prevention. You were not 
here, unfortunately, when HRSA testified.
    Ms. Mann. Oh, I was, sir.
    Mr. Coburn. Oh, were you? I did not see you. I am sorry. 
You are so petite.
    But I am concerned that this grey area that Dr. O'Neill 
talked about, you really do not find very grey. In fact, half 
of our HIV infections are coming from people who know they have 
HIV.
    So would you comment a little bit more, since you are right 
in the middle of this, on incorporating prevention into our 
CARE Act, so that we can at least take half of those, and limit 
the spread of this disease?
    Ms. Mann. Yes, Dr. Coburn, I am really not all that small.
    There are a couple of things that I hope we can clarify 
about this. I also sit on the CDC's STD/HIV Advisory Committee. 
So I am very aware and comfortable with the role of CDC and 
what it does in the area of HIV prevention and surveillance, 
and all the other kinds of things that they are so intimately 
involved in.
    I really do not see a problem or conflict here, for two 
reasons. One, Title IV, since its inception, has been involved 
in prevention services, as part of the Ryan White CARE Act.
    Now we do this in very specific ways. It is not massive 
counseling and testing programs that are funded in our 
community by CDC. These are very focused, case finding efforts, 
in order to find people with this disease, particularly, and 
our focus is on women, who are HIV infected, and getting them 
into our care system, that is funded by Title IV.
    It is very specific and very clear and very directed, and 
is not, in any sense, a conflict. But prevention is more than 
counseling and testing. I think that sometimes we make that 
mistake.
    What I think is also important here is that within the 
service, and I think Dr. O'Neill stated it very well, within 
people who have this disease, and I think you stated it 
earlier, what we have failed to do effectively is talk to them 
about prevention.
    It is a very simple paradigm. You do not get this disease 
from a toilet seat or anything else. You get infected from an 
infected person, having unprotected sex, or sharing needles, 
with an infected person doing this with uninfected person. That 
is the only way you get it.
    Most of CDC's efforts have been focused on the uninfected 
populations, and that is very commendable. What we have not 
done well enough in care is focus on behavior change and 
preventing transmission from people who already have this 
disease.
    We know that behaviors do change, as soon as people learn 
their status. But how do we get prevention messages better 
integrated into care, where care providers are talking to their 
patients, their case managers, and their clinicians are talking 
to them about prevention?
    It seems to me that this is not a particularly grey area. 
Care has an enormous responsibility. As I said in my testimony, 
40,000 new cases of HIV is not acceptable in this country. It 
is down from 100,000 and 150,000, and that is good. But we have 
a long way to go.
    So from my perspective, any place, anywhere, anyhow we can 
talk about prevention, in the community, in the clinic, we 
ought to be doing it.
    Mr. Bilirakis. Would the gentleman yield?
    Mr. Coburn. I would be happy to yield.
    Mr. Bilirakis. You also said in your testimony that 40,000 
new cases of HIV annually, has almost become acceptable here in 
the United States. Very briefly, what do you mean by that?
    Ms. Mann. It is not considered a crisis here any longer. I 
mean, you are now seeing on the news, day after day after day, 
the concerns about this epidemic in the Third World, in Africa 
and in other places. When is the last time you saw anybody talk 
about 40,000 new cases of HIV, in terms of the public's 
consciousness?
    I took a cab from my house to the train station to get 
here. I asked the cab driver, ``Do you have any idea how many 
people get HIV in this country every year?'' He said, ``Oh, I 
do not know, a couple of thousand, a few hundred, whatever.'' I 
said, ``How would 40,000 strike you?'' He said, ``No, that can 
not be right.''
    What I am saying is that the general population, your 
constituents, do not realize that every year, 40,000 people get 
this disease in this country. We have no public consciousness. 
It is not a crisis, and it should be.
    Mr. Coburn. Mr. Chairman, I just have one other question 
for Mr. Liberti.
    Mr. Bilirakis. Very quickly.
    Mr. Coburn. Do you have data on people who know their HIV 
status, and then go back to high risk behavior with that HIV 
status in Florida?
    Mr. Liberti. We really do not have data on that. We know 
that people who are HIV infected, those folks usually have 
several problems: mental health problems, housing problems, a 
cadre of drug problems. I do not think the drug problem has 
been stated loudly enough.
    Mr. Coburn. But I am particularly interested, since you 
have partner notification, and you are identifying where the 
contacts are coming from. You do not have any data looking back 
at the failure of education, for those that are infected, that 
go out and continue to infect? You do not see a recidivism rate 
in any areas at all, that you can trace from your data 
backwards?
    Mr. Liberti. We do, but I can not really produce those 
numbers for you today.
    Mr. Coburn. Okay.
    Mr. Liberti. I could respond in writing.
    Mr. Coburn. I would love to have that from you, if you have 
that.
    Thank you, Mr. Chairman.
    Mr. Bilirakis. And, really, we are asking all of you to be 
available, in terms of additional questions in writing that 
will be furnished to you.
    Ms. Eshoo has mentioned that she will have some and others 
have. Hopefully, you will respond to those as soon as you can, 
so that we can have them in a timely fashion.
    I want to express my appreciation on behalf of all of us to 
all of you. It has been a very lengthy hearing, but I think a 
very constructive one. We have learned a lot from you.
    Thank you.
    [Whereupon, at 2:24 p.m., the subcommittee was adjourned.]
    [Additional material submitted for the record follows:]
 Prepared Statement of Charles L. Henry, Director, Los Angeles County 
                   Office of AIDS Programs and Policy
    Mr. Chairman, and members of the subcommittee, I want to thank you 
for the opportunity to testify in favor of House Resolution 4807, 
amendments to and reauthorization of the Ryan White Comprehensive AIDS 
Resources Emergency (CARE) Act.
    My name is Charles Henry and I am the Director of the Office of 
AIDS Programs and Policy for the Los Angeles County Department of 
Health Services. On behalf of the tens of thousands affected by the 
AIDS epidemic in Los Angeles County and across the country, I urge you 
to reauthorize the CARE Act without delay. Reauthorization is vital to 
the maintenance of the critical health services safety net for persons 
with HIV disease and their families. I also urge you to enact measures 
to ensure that CARE Act resources are distributed equitably across the 
country and that increases in appropriations match or exceed the annual 
growth in AIDS cases.
    Recognizing the unique significance of the CARE Act, the importance 
of its reauthorization and the ethical imperative to correct long 
standing historical inequities, the Los Angeles County Board of 
Supervisors became in April, 1999 the first entity in the country to 
advocate for the reauthorization of the CARE Act.
    In 1981, two gay men in their thirties exhibited symptoms of a rare 
form of pneumonia to physicians in Los Angeles. These two men had what 
we now call AIDS, and were the first cases of disease diagnosed. 
Nineteen years later, these two cases of AIDS have become more than 
forty-one thousand AIDS cases in Los Angeles County alone, with more 
than twenty-five thousand deaths and nearly sixteen thousand living 
with AIDS today.
    In those early days of the AIDS epidemic, Los Angeles, like many 
communities across America, grappled with the devastating effects of 
AIDS. For the first decade of the epidemic, it nearly overwhelmed 
communities and public health systems across America without prompting 
a coordinated, comprehensive response. Epicenters like New York, San 
Francisco, Miami, and Los Angeles were especially hard-hit and 
witnessed many AIDS deaths.
    In 1991, Congress authorized the CARE Act, a lifeline to the 
creation of systems of care for people with HIV. The CARE Act offered 
the promise of ongoing responsiveness to communities most impacted by 
AIDS, and support for the delivery of vital health and health-related 
services.
    The epidemic continued to rage, expand and shift over the next five 
years, calling Congress to reauthorize the CARE Act in 1996. The number 
of jurisdictions eligible for Title I funds increased from sixteen to 
forty-nine. Dramatic increases in AIDS cases among communities of color 
foreshadowed the deepening crisis we see today here and abroad.
    Among the amendments enacted were modifications of the formula used 
to allocate Title I funds. The number of cumulative AIDS diagnoses, 
regardless of mortality, was replaced with an estimate of living AIDS 
cases. The legislation constructed the estimate of living AIDS cases by 
counting only those individuals diagnosed with an AIDS-defining 
condition within the previous ten years. Cases diagnosed each year are 
then adjusted to estimate mortality, with a greater weight associated 
with recently diagnosed cases than with cases diagnosed earlier (the 
``ten-year weighted band'').
    Although laudable in its intent, this practice has not fulfilled 
its intended purpose. Other amendments (notably the implementation of a 
``hold harmless'' provision in the formula portion of the Title I 
award) and other factors (including a shift in CARE Act resources to 
increase support of Title II and state ADAP programs) has resulted, in 
significant funding disparities in Title I, the portion of the CARE Act 
directed to the epicenters of the epidemic.
    Title I funds are not sufficient to meet the needs of all people 
with HIV/AIDS in all Title I jurisdictions. The insufficiency of 
resources requires careful consideration and difficult decisions to 
ensure that the burden of unmet need is distributed fairly. The burden 
of unmet need continues to escalate with the increasing numbers of 
people with HIV who do not have an AIDS diagnosis, the increased 
complexity of care and the absence of health care infrastructure in 
those communities in which the epidemic continues to expand.
    The ``hold harmless'' provision maintains widely disparate per 
capita funding, ranging from a low of approximately $1,800 per case to 
a high of more than $4,000 per case. Even when adjusted for variable 
costs of providing care, one jurisdiction continues to receive roughly 
twice as much funding per living AIDS case as any other jurisdiction in 
the country.
    As Congress did in 1991 and again in 1996, it must make every 
effort to ensure that the changes in the epidemic and the changes in 
the needs of people with HIV guide the changes to the CARE Act.
    Achieving per case equity can be accomplished by an increase in 
appropriations to Title I of the CARE Act, but would require an 
increase of more than $360 million. Equity can be accomplished through 
a ``hold harmless'' provision, but would require a minimum of 40% 
reduction to accomplish it in one year, or a minimum of 17% in each of 
five years. Los Angeles County has identified multiple strategies to 
achieve per case equity, while at the same time addressing concerns 
raised by other stakeholders in this epidemic.
The use of living AIDS cases reported by the Centers for Disease 
        Control and Prevention in place of a ten-year weighted band.
    Absent a nation-wide standard on HIV surveillance and reporting, 
Los Angeles County urges you to support the use of living AIDS cases, 
with a transition to living HIV cases upon the availability of 
reliable, consistent data from all eligible jurisdictions. The current 
ten-year weighted band approach substantially under-estimates the total 
number of individuals living with AIDS in Title I jurisdictions. It is 
also significant that the ten-year weighted band disregards individuals 
with an AIDS diagnosis older than ten years, a cohort of people with 
AIDS that is increasing due to the success of new treatments. The use 
of living AIDS cases to replace the existing ten-year weighted band is 
sensible and straightforward.
Increased appropriations, including a minimum increase proportionate to 
        the increase in living AIDS cases among eligible jurisdictions.
    We must also consider appropriations that keep pace with the 
epidemic. Over the last five years the average annual AIDS growth rate 
among the fifty-one Title I eligible metropolitan areas (EMA) has been 
approximately 10.5%, while the increase in CARE Act Title I 
appropriations, controlling for newly funded jurisdictions, has been 
approximately 8%. Cases in Title I eligible metropolitan areas (ENM) 
comprise approximately 75% of all AIDS cases nation-wide; in 
California, more than 90% of those living with AIDS live in a Title I 
EMA.
    An increase in appropriations proportional to the increase in 
living AIDS cases is critical to the ability of health jurisdictions to 
meet the expanding need for services to people living with AIDS and to 
ensure appropriate care for those with HIV who do not have an AIDS 
diagnosis.
Institutionalization of the Minority AIDS Initiative to ensure 
        sustained financial investment to jurisdictions experiencing 
        significant case loads among people of color.
    As the national AIDS epidemic continues to expands in communities 
of color, a steady stream of resources is required to meet the 
tremendous care, treatment and support needs of communities of color. 
The Minority AIDS Initiative (MAI) has distributed resources among 
Title I EMAs based on the number of living AIDS cases among people of 
color.
    The effect of the MAI, if not the intent, is to correct to some 
extent the effect of the ``hold harmless'' provision. A considerable 
number of underfunded Title I EMA's are the same jurisdictions that 
have the highest proportion of people of color with AIDS. 
Institutionalizing the Minority AIDS Initiative would further the 
effort to improve capacity in communities of color to respond more 
effectively to the epidemic. Furthermore, we need to ensure that 
capacity is sustained over the course of the epidemic. Year-to-year 
appropriations to support the Minority AIDS Initiative does not allow 
jurisdictions to plan, support and implement long-term grassroots 
strategies.
More progressive guidance for CARE Act Title I supplemental funds.
    The supplemental portion of Title I is intended to address severe 
need. The competitive application process does not consider measures of 
severe need that are standardized across eligible jurisdictions, 
rendering it difficult to assess the success of the supplemental 
program in identifying and addressing severe need.
    The striking, historical reality is that supplemental funds have 
been awarded in proportions roughly equivalent to the formula awards, 
thereby doubling the effect of the allocation methodology used for the 
formula award and exacerbating the disparity of funds among 
jurisdictions.
    Los Angeles County supports the use of standardized measures of 
severe need, including the rapid growth in the number of people with 
HIV/AIDS, the increasing diversity of clients to be served, the 
relative costs of providing services, the increased complexity of care 
and the lack of infrastructure and capacity to provide services.
    Furthermore, Los Angeles County endorses AIDS Action Council's 
recommendation that severe need criteria play a larger role in final 
Title I supplemental award decisions. The supplemental program could be 
used to redress the long-standing funding disparities evident in the 
formula award.
    Los Angeles County is the second most impacted jurisdiction in the 
country. As we are challenged to maintain and improve the delivery of 
services for people with HIV/AIDS, we also face stark realities. The 
hope for an effective vaccine appears to be far away. Social factors 
that fuel disease, especially homophobia, racism, poverty, gender 
inequality and drug abuse, continue to rage in our country. HIV 
complacency challenges HIV prevention efforts on a daily basis. We have 
limited resources.
    For thousands of Americans, the Ryan White CARE Act has improved 
the quality of life and has allowed some--too many--to die with 
dignity. The multi-titled structure of the CARE Act has provided an 
important framework for communities to develop responsive service 
delivery systems. Coordination among Titles, however, must be improved. 
The planning of services by local Title I planning councils must be 
coordinated with Title II planning efforts at the state level and with 
providers directly funded by Title III, Title IV and Part F. To achieve 
this, the same mandate for coordinated planning placed on Title I 
planning councils should be placed on those entities responsible for 
local services funded by Title II, Title III, Title IV and Part F.
    In the spirit of cross-title coordination and expansion of local 
control, Los Angeles County endorses AIDS Action Council's 
recommendation to allow non-university based dental programs to 
participate in the CARE Act Part F reimbursement program. Increasing 
the number and geographic diversity of dental service providers will 
improve access and ensure more effective coordination with other 
services.
    Every year, jurisdictions funded with CARE Act resources must 
establish and approve AIDS care and treatment funding priorities. It is 
always a difficult task. It is even more difficult when the ability to 
establish a service delivery system of sufficient capacity is crippled 
because of limited investment by local jurisdictions and states or by 
allocation methodologies unresponsive to documented need and 
longstanding funding inequities.
    Los Angeles County joins the request of the AIDS Action Council 
that the CARE Act remove disincentives for local jurisdictions to 
contribute to HIV care and treatment. The existing maintenance of 
effort requirements discourage contribution of resources because it may 
trigger a long-term obligation. It is incumbent that we consider 
alternatives to increasing local contribution for HIV/AIDS care and 
treatment services without threatening the infrastructure of health 
delivery systems.
    Efforts to set in place responsible funding mechanisms will ensure 
that over the course of this epidemic jurisdictions which continue to 
be heavily impacted can rely on fair, equitable and need-based federal 
allocations in the future. I applaud the leadership and vision of Mr. 
Coburn and Mr. Waxman for including in House Resolution 4807 mechanisms 
to address the inequities in funding that have resulted 
unintentionally.
    Absent an increase in appropriations, a two percent ``hold 
harmless'' provision would require more than twenty years to achieve 
per capita funding equity. In fact, the effect of this proposal appears 
to be substantially different from its intent. The relative position of 
the only jurisdiction currently benefiting from the ``hold harmless'' 
provision would improve, increasing from 188.7% of overall per capita 
allocation now to a projected 227.1 % of overall per capita allocation 
in the fifth year of the next authorization period. This effect is 
caused by the discrepant rates of growth in AIDS cases, based on the 
data reported by the CDC.
    The Los Angeles community appreciates your efforts to safeguard the 
systems of health and support services for thousands of Americans 
living with HIV/AIDS, and respects your advocacy and leadership to 
ensure that we accomplish fair and equitable federal health care 
funding across the country. a urge you to appropriate resources fairly 
so that all severely impacted jurisdictions have an opportunity to 
respond effectively to this ongoing public health crisis.
    Thank you for your time and for your consideration of these 
important matters.
                                 ______
                                 
  Prepared Statement of W. Shepherd Smith, President, Americans for a 
                         Sound AIDS/HIV Policy
    Thank you, Mr. Chairman and other distinguished members of this 
committee, for the opportunity to appear before you once again. I would 
like to begin by congratulating Congressman Bliley for his efforts to 
have these hearings before rushing into a re-authorization of this act 
last year. The pressures on him to move forward quickly in the fall 
were ill advised, and he showed considerable courage in standing up to 
often times unreasonable, if not-unethical, lobbying tactics. The 
Republicans in the Senate should be congratulated, as well, for their 
effort to not re-authorize Ryan White in 1994.
    The reason that it is critical that this important AIDS care act be 
reviewed carefully is that it is fundamentally flawed in its present 
form. The basic error in the Act is in its formula for distribution of 
care dollars. It was based on AIDS prevalence, which is an accumulation 
of all AIDS cases from the beginning of the epidemic. As we know, 
unfortunately, about 60 percent of those individuals have died. 
Consequently, a disproportionate share of proceeds went to cities that 
had the earlier epidemics of HIV and AIDS, and did little for areas 
with rapidly growing new case loads.
    You will hear significant amounts of data from the Government 
Accounting Office which has done an excellent job in evaluating where 
monies went under the old formula and what a redistribution of those 
dollars means to cities and states most impacted today. To illustrate 
the disparity in distribution of Ryan White dollars under the old 
formula, a city such as San Francisco received approximately $4,300 per 
case while an individual from Chicago received approximately $1,600, 
and in some rural areas of the country as little as $640 apiece. It is 
fundamentally unfair to have such significant disparities for people 
who are suffering from this disease since they all face substantial 
needs.
    As the only AIDS organization which openly opposed Ryan White re-
authorization in the form that was put forward last year, we would 
encourage this committee to look carefully at suggested formulas since 
nearly anything can be done with numbers. The ideal way to distribute 
dollars would be to give aid to those people who are either HIV 
positive or have symptomatic AIDS who need care; i.e., those living 
with the disease today in need of care. However, that is quite 
difficult to do since as a nation we have focused very little on HIV 
disease, rather we've put the bulk of our attention on end-stage 
symptomatic AIDS. Even there our record keeping is something less than 
perfect in that many people, perhaps as many as 10 to 20 percent of 
AIDS cases, go unreported for a number of reasons; and often where 
contact is lost with an individual they may have died but are still 
listed as people living with AIDS. Consequently, you're dealing with an 
inexact science that requires some healthy repair.
    It is our suggestion that dollars be distributed to state public 
health departments for distribution based on HIV infections and AIDS 
cases that accurately reflect those people living with this disease 
today who have medical needs in their jurisdictions. This can be done 
by greater reporting of HIV and more medical/public health involvement 
of those suffering. This suggestion, of course, brings with it the 
combining of Titles I and II. I'd like to articulate now the benefits 
of combining these Titles and giving State Public Health Directors and 
their State AIDS Directors more flexibility in responding to this 
changing epidemic in their respective states.
    The AIDS epidemic as we know it is changing dramatically. What was 
thought to be a disease of predominantly white gay men is rapidly and 
unfortunately becoming a disease of color. This last year over 55 
percent of AIDS cases reported by the CDC were people of color. What is 
alarming about these numbers is the rapid increase in percentages 
within various racial and ethnic groups. For example, AIDS cases in 
1994 within the African American Community grew by 3 percent of the 
total AIDS cases reported, and now show that community over-represented 
in the epidemic by three times.
    I would like to illustrate the dramatic disparity between the rates 
of AIDS cases in these two primary communities, the African American 
and the White community, as reported by the CDC last fall. The attached 
charts came out of the report that AIDS is now the leading cause of 
death among all men age 25 to 44. However it is by far the leading 
cause of death among Black men and the second leading cause of death 
among White men in that age group. The graph illustrates a similar 
dramatic rise among Black women versus White women. I would like to 
also interject that this issue of dramatic disparity should come as 
news to no one since military data in the mid 180s, which was focused 
on HIV infections, showed that these trends would ultimately occur 
(even though at the time the ratio of whites to Blacks was 
significantly greater in AIDS cases).
    1985 to 1988 data showed that black women in the armed forces had 
higher rates of HIV infection than white men; a time when most people 
believed this was nearly exclusively a white man's disease. The 
military data illustrates our need to look more closely at trends in 
HIV infections, which ultimately result in AIDS cases. By doing this we 
can plan much more effectively for future resource needs and changes.
    The purpose in illustrating the differences in rates and the 
changing face of this epidemic is to say that within each state needs 
also change year to year. We are seeing right now, for example, the 
greatest increases in HIV infected infants occurring in the rural South 
rather than the Northeastern metropolitan areas. By combining Titles I 
and II it will allow states to better direct resources in response to 
the changing dynamics of the epidemics in their respective areas. It 
could be argued, in fact, that all Ryan White Titles be combined and 
dollars distributed on cases by state with little federal involvement. 
However, I think there are reasons why some small portion of dollars 
should have federal control; so that efforts can be better coordinated 
at a national level for what is a series of regional epidemics that 
affect the entire nation as the epidemic spreads to new areas.
    As you move forward in your consideration of Ryan White 
reauthorization we would encourage you to evaluate this special health 
issue funding in respect to all other health issues. We have set a 
precedent with this particular program that may or may not be 
applicable to long-range health care financing objectives. when the 
first Commission on HIV issued its report in June of 1988, it raised 
the question of the challenge posed by HIV in respect to financing. I'd 
like to include a quote from that valuable document:
        ``The Commission believes that the financing issue is one of 
        the most difficult problems of the HIV epidemic. It is not easy 
        to answer the questions about treating AIDS and HIV infection 
        apart from other devastating sicknesses and diseases. If we can 
        make changes in our financing system, do we do it only for 
        those with HIV or do we do it for everyone? Allocating limited 
        healthcare resources when the needs are so great presents a 
        significant challenge.''
    So we would, therefore, encourage the Committee to look at Ryan 
White re-authorization in respect to Medicare, Medicaid, Social 
Security Disability Income and other benefit plans that individual 
states have set up in respect to caring for those suffering from this 
disease. While we fully support reauthorization funding levels for this 
Care Act, we nevertheless feel it is important to evaluate this program 
in respect to other programs presently in place and those that may be 
anticipated in the future since this is a five year re-authorization 
measure. The reality is that there may be ways to enhance benefits for 
those who suffer from HIV and AIDS through other mechanisms and we 
would want the Congress to retain flexibility in being able to do that 
in the future; and to evaluate if this is a good model for other 
medical conditions, which it may well be.
    In respect to funding levels I don't believe anyone in the AIDS 
community believes we will ever see the unprecedented growth in funding 
we saw under the Reagan and Bush administrations. We do expect, 
however, to see the continued commitment from this Congress and 
Administration that this issue has received in the past. But funding 
should be based on realistic needs and should be in perspective 
to.needs of all people with serious illnesses. We, therefore, encourage 
the Committee to fully fund Ryan White at its present suggested level, 
but in a way that creates greater equity to all in need and 
fundamentally embraces our fairness doctrine.
    Fairness to Americans for a Sound AIDS/HIV Policy means that those 
individuals with needs receive benefits equally. This Congress has the 
opportunity to structure Ryan White reauthorization so that those with 
the greatest needs today are the primary beneficiaries. And it is a 
fact that those with the greatest needs today are individuals from 
communities of color. In respect to how this can best be done, we 
suggest the following:
    (1) Base distribution of dollars by state on numbers of people 
living with HIV and AIDS who have care needs. This expanded definition 
to include HIV positive individuals who don't necessarily fit the AIDS 
case criteria will benefit women and children who often receive 
substandard care because they don't meet present case definitions for 
AIDS. If states are unable to define, because of a lack of HIV 
reporting, those individuals who presently are living with HIV and AIDS 
who need care, then we would suggest the formula be based on the last 
two and one-half years of cumulative AIDS cases. We believe this would 
be a reflective number of total numbers of people presently living with 
HIV and AIDS.
    (2) We are troubled by the double counting in respect to formulas 
and feel that by combining Titles I and II we can largely eliminate 
this measure in present Ryan White formula configurations.
    (3) We would hope that dollars are distributed to locations where 
people are presently living with HIV and AIDS rather than to where they 
were originally diagnosed, as is part of the present Ryan White 
formula. As the epidemic changes in focus we may find that more people 
from city areas move back to their rural homes, particularly in the 
South, and that the needs would grow significantly there. Such a 
formula change would then incorporate our concept of fairness.
    (4) We hope that added measures of means testing be applied to 
those receiving benefits. While the present formula does restrict 
benefits to a large degree, we believe it important that tighter 
measures be required so that dollars be given to those who truly need 
them and can't afford such benefits otherwise.
    (5) Lastly, the program needs to be evaluated critically in respect 
to bureaucratic waste. Are there ways to reduce red tape and any 
excessive program costs so that more dollars can go to those in need 
and not to a bureaucratic infrastructure?
    In conclusion, I would like to share a little from our experience 
in this epidemic. This past year we helped over 8,400 children and 
families affected by this disease in some way, making us one of the 
largest AIDS service organizations in the country, if not the largest. 
Most of our clients come from underserved communities and the most 
often heard complaint is that while funds are available to others, they 
often aren't to them. There is inequity today created by the Ryan White 
Care Act that must be changed. And we must remember that this epidemic 
itself is changing rapidly in composition. Any measure this Congress 
enacts must take into consideration the needs of those truly needy, the 
needs of those in communities of color, and the needs of women and 
children.
    The benefit of our suggested expanded definition of including HIV 
positive individuals who have care needs combined with the formula 
change we hope will result ultimately in a decreasing epidemic. By 
giving greater focus to HIV rather than just end-stage disease AIDS we 
will ultimately be able to provide optimal medical care to those who 
need it and allow those infected to have the opportunity not to infect 
others. Because of our over focus on AIDS rather than HIV most people 
in the United States today who carry the virus are totally unaware that 
they are infected and most often have no idea they have even been 
exposed to anyone infected. Consequently, we have an epidemic largely 
out of control, one which has the potential unfortunately to lead us 
soon to believe that this is a disease of color. The truth is that this 
is a sexually transmitted disease that will end up where all STDs end 
up and that's among sexually active young people of all races, 
particularly heterosexuals.
    As the Committee formulates final language on this Act, I would 
like you to remember the first point of the executive summary of the 
Presidential Commission on HIV issued in June of 1988:
          ``The term `AIDS' is obsolete. `HIV infection' more correctly 
        defines the problem. The medical, public health, political, and 
        community leadership must focus on the full course of HIV 
        infection rather than concentrating on later stages of the 
        disease. Continual focus on AIDS rather than the' entire 
        spectrum of HIV disease has left our nation unable to deal 
        adequately with the epidemic. Federal and state data collection 
        efforts must now be focused on early HIV reports, while still 
        collecting data on symptomatic disease.''
    So while you are essentially focusing on care for those in end-
stage disease, a careful restructuring of formulas and distribution of 
dollars will hopefully affect the course of this epidemic so that such 
funding can ultimately be eliminated entirely when this epidemic is 
eliminated from our country. Thank you.
                                 ______
                                 
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