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Document 8 of 36.

July 11, 2000, Tuesday

SECTION: CAPITOL HILL HEARING

LENGTH: 33001 words

HEADLINE: HEARING OF THE HEALTH AND ENVIRONMENT SUBCOMMITTEE OF THE HOUSE COMMERCE COMMITTEE

SUBJECT: THE RYAN WHITE COMPREHENSIVE AIDS RESOURCES EMERGENCY ACT OF 1990

CHAIRED BY: REPRESENTATIVE MICHAEL BILIRAKIS (R-FL)

WITNESSES:

CLAUDE EARL FOX, ADMINISTRATOR, HEALTH RESOURCES AND SERVICES ADMINISTRATION, ROCKVILLE, MD.;

JANET HEINRICH, ASSOCIATE DIRECTOR, GENERAL ACCOUNTING OFFICE;

JEANNE WHITE, NATIONAL SPOKESPERSON, AIDS ACTION;

TOM LIBERTI, CHIEF OF HIV/AIDS BUREAU, FLORIDA DEPARTMENT OF HEALTH;

JOE DAVY, POLICY ADVOCATE, COLUMBUS AIDS TASK FORCE;

JOSE F. COLON, COORDINATOR, PACIENTES DE SIDA PRO POLITICA SANA;

GUTHRIE S. BIRKHEAD, DIRECTOR, AIDS INSTITUTE, NEW YORK STATE DEPARTMENT OF HEALTH;

DOROTHY MANN, BOARD MEMBER, AIDS ALLIANCE FOR CHILDREN, YOUTH & FAMILIES;

EUGENE JACKSON, DEPUTY EXECUTIVE DIRECTOR FOR POLICY, NATIONAL ASSOCIATION OF PEOPLE WITH AIDS;

LOCATION: 2123 RAYBURN HOUSE OFFICE BUILDING, WASHINGTON, D.C.

TIME: 10:00 AM. EDT DATE: TUESDAY, JULY 11, 2000

BODY:
REP. MICHAEL BILIRAKIS (R-FL): 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 we introduced by two members of this subcommittee, Congressman Tom Coburn and Congressman Henry Waxman, and 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 bean original cosponsor of the bill which demonstrates what can be accomplished when partisan differences are set aside.

The Ryan White Comprehensive AIDS Resources Emergency or 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 one million Americans living with HIV and AIDS. The reauthorization bill before us will ensure that these patients continue to receive the care and medications that 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 underserved communities and getting them into care. This emphasis on prevention services is part of a comprehensive effort under the legislation to eliminate barriers to access to care.

I'd like to thank all of our witnesses for taking the time to join us, and I'm sure that their knowledge and insight will prove valuable as we discuss this important legislation.

It's always a pleasure to welcome a Floridian before the subcommittee, and today we'll hear from Mr. Thomas Liberti, Chief of the Bureau of HIV and AIDS for the Florida Department of Health.

Florida's population is racially and ethnically diverse, and 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, Jean White today. Since her son Ryan's tragic death over ten years ago she has served as an eloquent spokesperson and tireless crusader for individuals stricken with HIV and AIDS. With your help, Jean, we can pass legislation that would make Ryan proud.

The Chair now yields to Mr. Brown, the ranking member.

REP. SHERROD BROWN (D-OH): Thank you, Mr. Chairman. I'd 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'd 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. It combats the illness itself, one, and second, it combats the fear of prejudice and alienation that HIV/AIDS has engendered in this country.

The Act was created in memory of Ryan White, the young Kokomo, Indiana teenager who became a national 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 of 1990. Now ten years later 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 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's 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, activists and people living with HIV/AIDS are meeting in Durbin, South Africa, as part of the 13th International AIDS Conference. AIDS is said 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's keep his lessons alive and reauthorize this bill.

REP. BILIRAKIS: I thank the gentleman for his eloquent statement, and now yield to the gentleman, the co-writer, if you will, of the legislation, Dr. Coburn.

REP. TOM A. COBURN (R-OK): Thank you, Mr. Chairman. I appreciate your 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. And over the past year we've 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 past bill for a very important reason. Those with HIV are too often not figured in in the components for CARE.

Number two, this is a disease that is preventable. It is preventable. It need not go further. And the Act will be changed to emphasize prevention, as it should be.

The best and most efficient use of our knowledge 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 don't 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 an emphasis has been moved to where the epidemic is, which is an HIV infection, not necessarily fully blown AIDS.

So we don't drop any of our attention to AIDS, but we increase our attention and directed purpose towards 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've been very successful in lessening perinatal transmission. But we've not gone far enough. And as New York State's experience shows, we can do much better in the country. It's a position of the American Medical Association that prenatal 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.

Finally, this bill addresses those that have not been served appropriate. Especially minorities, especially women, especially rural areas that have not had access to equal treatment. HIV doesn't care who you are, doesn't care where you live, doesn't care about your sexual orientation, and neither should we. We should make sure that everybody has full and equal access to treatment who have this disease. I feel confident that we're going to accomplish that with this bill.

Finally, this bill assures accountability of federal dollars. As we've seen from the GAO audit, there are some significant problems with the large amounts of monies that have been misspent or misused in this fight. When people in Oklahoma can't get ADAP money and yet people are stealing millions of dollars from Ryan White funds, I think the Congress has to address that, and I believe that we have effectively in this bill.

With that I yield back to the Chairman in hopes that we can move to a fast mark on this and to a full committee.

REP. BILIRAKIS: I thank the gentleman.

Ms. Eshoo for an opening statement?

REP. ANNA G. ESHOO (D-CA): Thank you, Mr. Chairman, for having this hearing, and good morning to you and to the witnesses that have joined us today. And 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 life saving and life enhancing medical and social services will continue to be available for 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 five percent of its funding over a five year period. This hold harmless provision was specifically designed to prevent the rapid destabilization of existing systems of care when changes in the Title 1 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, and 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've 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 doesn't account for this increased public health burden.

While the original CARE Act based part of the Title 1 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 five percent hold harmless specifically to minimize the negative impact of this change.

The current funding formula also failed to reflect those living with HIV. In the Bay area there are a significant number of people with HIV who haven't progressed to an AIDS diagnosis specifically, due to their ability to access care and services.

As a result, San Francisco and other EMAs are penalized for keeping people healthy under the existing formula. We still don't recognize density or living HIV cases in the Title 1 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've 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 won't leave the Bay area without its safety net.

And Mr. Chairman, I'd like unanimous consent to submit for the record an article that appeared in the San Francisco Chronicle on Friday, June 30th, that's entitled "San Francisco HIV Rate Surges, Alarming Incidents of New Infections Raise Fears of Scourge to Come."

REP. BILIRAKIS: Without objection, that will be the case. And I might add at this point that the opening statement of all members of the subcommittee will be made part of the record.

REP. BROWN: Thank you, Mr. Chairman.

REP. BILIRAKIS: I thank the gentle lady.

Mr. Waxman, the other co-writer of the bill.

REP. HENRY A. WAXMAN (D-CA): Thank you very much, Mr. Chairman. I am pleased 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, Paul 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's not perfect. It's not how either Dr. Coburn or I would have written it left to our own devices, but 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'm pleased that our bipartisan consensus bill promises a stronger, more decisive response to the epidemic than is possible today.

You'll hear from witnesses about the terrible threats 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 underserved 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 programming quality and accountability, it calls for greater coordination of HIV care and HIV prevention efforts. These are the reasons most of the members of the committee are cosponsors. It's the reason I hope their support will lead to speedy consideration of the bill and make passage this year possible. The Senate has already passed its bill by unanimous consent, so now it's up to us.

We cannot delay passage of this legislation. Today as we speak the world's experts are meeting in Durbin, 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, 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.

REP. BILIRAKIS: I thank the gentleman.

Ms. Cubin, your opening statement?

REP. BARBARA CUBIN (R-WY): Thank you, Mr. Chairman.

Over the course of the last ten 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've managed to make great strides in the fight against AIDS -- progress that perhaps was inconceivable ten 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 have fought tirelessly for this cause, many of whom are here with us today.

Thanks to 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're 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 continent, in that area, anyway, will die from the disease. Citizens there cannot 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's not forget the toll that AIDS has taken, both in this country and across the globe. We cannot afford to become complacent in how we view this disease, and 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.

Thank you, Mr. Chairman. I yield the balance of my time to Mr. Coburn.

REP. COBURN: Thank you.

Mr. Chairman, I just ask unanimous consent to enter into the record the article from July 6th in the Bay Area Reporter which lists exactly the Roth add-on, the number of HIV cases, new infection cases, and the fact that the 900 number is not an official Department of Health number.

REP. BILIRAKIS: Without objection, that will be the case.

Ms. Capps for an opening statement.

REP. LOIS CAPPS (D-CA): 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 Center for Disease Control and Prevention estimates nearly one 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. The dramatic drop that we saw for a time in the rate of deaths from AIDS has slowed down. All of these are matters for concern.

Clearly the time is right for Congress to reauthorize the Ryan White CARE Act, and 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's hard to believe that's ten years ago. Reauthorized once in 1996 with overwhelming bipartisan support, the Senate earlier this month as you know unanimously passed legislation reauthorizing the CARE Act. Now it is time for the House to act.

I am a cosponsor 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 underserved communities, and bringing those individuals with HIV/AIDS who aren't 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 program. Finally, the bill begins to shift Ryan White funding and services as we have heard, toward the HIV infected population, not just individuals with AIDS. And 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 Breckwald (sp) from Santa Barbara County Health Care Services, this is in my district. I've 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 2 and Title 3 funding. Title 2 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's rent, utilities, transportation, basic expenses that can determine if someone will be able to afford a place to live.

Title 3 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 life. These funds can help with medical care, education, dental care. They also help those diagnosed to 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, deferring 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.

REP. BILIRAKIS: I thank the gentle lady.

Mr. Deal, for an opening statement.

REP. NATHAN DEAL (R-GA): 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 '80s. 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 '80s 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.

REP. BILIRAKIS: I thank the gentleman.

Mr. Green for an opening statement.

REP. GENE GREEN (D-TX): 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'll 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's estimated through 1998 there were 7580 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, while over 80 percent of the persons living with AIDS are male, from 1992 to '97 the number of newly diagnosed AIDS 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 in 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 Americans.

The Ryan White CARE Act addresses the urgent concerns of my constituents and helps bridge the gap 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 have resulted in a reduction in the AIDS death rate. This increased longevity among people with HIV has contributed to an increased demand for the HIV/AIDS care infrastructure.

In my district, Ryan White providers have experienced from 30 to 40 percent increase 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 presented by this complex epidemic, it's essential that we support innovative and flexible solutions to solve our nation's AIDS problem.

In closing, I hope to also cosponsor a bill, and the impact on the Houston area is available, especially from the GAO projections. The Ryan White CARE Act itself has created in this period as an essential component in our nation's fight against HIV and AIDS, and hopefully it will be reauthorized immediately.

Thank you, Mr. Chairman. I yield back my time.

REP. BILIRAKIS: Thank the gentleman.

Mr. Burr for an opening statement.

REP. RICHARD BURR (R-NC): Thank you, Mr. Chairman. I'll be very brief.

As an original cosponsor of this bill, I want to applaud the work of Dr. Coburn and Mr. Waxman in working out the differences, and 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.

REP. BILIRAKIS: I thank the gentleman. That certainly is our intent.

Mr. Towns, for an opening statement.

REP. EDOLPHUS TOWNS (D-NY): Thank you very much, Mr. Chairman. Let me also commend my colleagues, Congressman Waxman and Congressman Coburn, for this outstanding job that they've done.

However, as I look and I see in terms of some of the problems that we're having with the formula and also the hold harmless provision, I really feel that we might have an opportunity here to fight for some additional funds.

There's a surplus that we talk about from time to time, and I think that if we have a surplus, I don't know of a better place to use it than here. We're talking about life and death. We're talking about people that are dying.

We have many people that can't get the therapies that are available. They can't afford it. In some instances there's no access. When you look at all of this and we think about the fact that yes, it's changing and we know that, but I don't feel that we are actually doing the kinds of things we need to do in order to make certain that we're doing the best job.

I want to applaud my colleagues for their creative thinking, and I think they've done a great job in this area. But I do believe that this is a time and the opportunity for us to fight for additional dollars, because there's surpluses out there -- I can't even call it a surplus until we put more money in programs like this.

Mr. Chairman, I want you to know that I stand ready to fight for additional funds along with this legislation. And I think if we do that, then the hold harmless provision, people will not be so frightened by it. Because what we're talking about here is targeting resources and even though the problem is great and you can be talking to resources, we're still leaving a lot of people out, and I don't think we should leave anybody out.

So Mr. Chairman, let me yield back, and I'd like to ask permission to put my entire statement in the record.

REP. BILIRAKIS: Without objection that will be the case.

Ms. DeGette for an opening statement.

REP. DIANA DeGETTE (D-CO): Thank you, Mr. Chairman.

I want to add my congratulations for having this hearing and apologize, I'll 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's been a dramatic decline in AIDS death rates over the last few years. And also, due to prevention efforts and again the drug therapies, the number of pediatric AIDS cases resulting from mother to child transmission is down 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 the threat that as Jean White, who is Ryan White's mother said, "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've 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've been part of the successful national trend to 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. And so as a result, and having come out of the Colorado legislature, I can say I think it's 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 don't expect me as a fairly liberal Democrat to be such a federalist, but I really question whether it's the best use of our resources to require all states to have mandatory HIV testing when maybe it's 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've 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, provide safe and confidential testing, and then provide them with comprehensive and accessible prenatal care to address the issue of prenatal transmission of HIV, as Eugene Jackson who is going to testify today.

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.

And I have other issues as well, Mr. Chairman, but in the interest of time I'd just like to again say thank you for holding this hearing, and I know that a lot of important issues we're going to discuss.

I yield back the balance of my time.

REP. BILIRAKIS: I thank the gentle lady. I believe that completes all the opening statements so we'll call on Dr. Fox to come forward at this point.

Claude Earl Fox, M.D., MPH, is administrator of the Health Resources and Services Administration.

Dr. Fox. Your written statement of course as per usually is a part of the record. We will turn the talk, since you're representing the administration, to ten minutes. Do the best that you can in that regard, and we appreciate your coming forward, sir.

DR. CLAUDE EARL FOX: Thank you, Mr. Chairman. If it's permissible with the Chair, I'd like to ask Dr. Joe O'Neill, who's head of the HIV/AIDS Bureau, to join me at the table.

REP. BILIRAKIS: By all means, without objection that will be the case.

DR. 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've already heard, the epidemic is changing over time. We're seeing an increased number of minorities, an increased number of women, increased number of youth, 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 pleased with 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'd like to run through quickly some of those areas, and I will keep my time brief because I know the committee wants to leave time for questions.

The first is that we are very supportive of the use of ethnologic data and the collection and use of the 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, and we think again it's very appropriate to use in a variety of areas looking at unmet need, allocation of funds, et cetera.

We appreciate the emphasis on the early intervention activities and we very much like, as this bill suggests, to be able to target early intervention activities both in Title 1 and Title 2, testing, counseling and referral like we do in Title 3 presently.

The new supplemental Title 2 awards, again, we're very supportive of these. We have some concerns about how they're disruptive, but we are supportive of the concept. I personally come from a very rural state and understand the issues that concern the committee here.

The new Title 3 capacity grant program, we know that as the epidemic moves into minority communities more than it has in the past, and in underserved communities, we have to look at ways for getting services where they're not there now and we think the capacity grants will help do that.

The issue around partner notification we're supportive of to provide additional resources to the Centers for Disease Control in making that available to states. I was 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, and 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've been problems, but they said overall, we had adequate controls.

We do support the audit requirements that are in this bill, and think they help to assure accountability.

The relationship 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, and again think that will improve access to care.

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 and I'd 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're very supportive of 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 Ryan White grants are concerned, to the provision of primary care.

The expertise in my agency's in care. It's not in surveillance and prevention. We have a number of things that we're doing right now with CDC that I'd 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 and we think this is something that obviously needs to receive a great deal of attention.

But we agree with the IOM that testing should be universal and routine, but not mandatory.

We're supportive of grants to states to increase prevention activities to reduced transmission, but we think funding should not be dependent on states having to enact mandatory testing laws.

The next area we have a concern about is the administrative requirements around the competitive Title 2 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 2 applications, and accomplish the ability to get money out there but in a way that's administratively least burdensome.

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're pretty administratively lean in this area.

However, the requirement to mandate a 20 percent increase in FTEs, particularly when there's not a guarantee of increased funding, we have some concern about.

We have placed before the agency a priority in the AIDS area for any new FTEs that we're able to get funding for from Congress for the HIV/AIDS. We have not 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 increasing level of funding that we think may or may not be funding there to enact. If that's the case, then we'll 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 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. And again, we appreciate you having us here, and having the opportunity to discuss this bill.

REP. BILIRAKIS: Thank you very much, Doctor.

By the way, certainly I wouldn't as 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 --

DR. FOX: I plan to stay.

REP. BILIRAKIS: I find that that's usually very helpful.

Sir, your testimony singled out increased resources for partner notification as an important prevention tool for the program, so again, I would ask you to maybe from the standpoint of additional emphasis, how important is a tool to identify at risk individuals and getting them into prevention and care programs?

DR. FOX: We use this tool in other areas and it has worked.

The state I was the health commissioner of, State of Alabama, has had partner notification in place and actually we started zero prevalence reporting of zero prevalence I think in 1987.

They're currently I think finding about two partner contacts per HIV case that's reported. I talked to the state epidemiologist there yesterday, in fact, and I think they feel it is quite effective and is helpful in trying to reduce instances of AIDS.

REP. BILIRAKIS: Thank you for that, because I'm sure that we all agree that the best care is prevention, is it not.

DR. FOX: Right.

REP. 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 as I'm sure you know, that all states and territories include name surveillance for HIV infection as an extension of their AIDS surveillance activities. On May 11th 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?

DR. FOX: Yes, sir. The department supports the zero 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 zero 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 name reporting.

But in general, yes, we're supportive of that.

REP. BILIRAKIS: Are you suggesting that in the process of supporting it that you feel there should be either additional legislation or some sort of language included in this legislation?

DR. FOX: I think that states should look at what their own state laws provide, and there may be some model legislation around confidentiality that states could look at and consider.

I suspect there's some variability around the levels of confidentiality protection around this information. And I think as any public health surveillance system, the long term quality of it really depends on the ability to protect the confidentiality of the clients involved.

REP. BILIRAKIS: I certainly would agree, I know we all would agree with that.

Well, I just want to invite you, welcome you, whatever the case may be, to coordinate with this committee in terms of any suggested legislation, wordage, if you will, that is very significant. Because if we all agree that name surveillance for HIV inspection should be an extension of the AIDS surveillance activities, then by gosh we ought to be working towards that end altogether.

DR. FOX: We look forward to working with you, Mr. Chairman.

I do think the CDC recommendation, at least I know what was discussed in the department, did allow provisions for states that wanted to have a unique identifier to do so. There are some states I think that are providing this zero prevalence data in that fashion, although it's certainly, some states are doing one way and some states are doing it another.

REP. BILIRAKIS: All right. I would yield to Mr. Brown at this time.

REP. BROWN: Thank you. Thank you, Dr. Fox.

You stated in your testimony you had some concern that community prevention was not sufficiently tied into primary care. Could you elaborate on that? Suggest what kinds of changes you would like to see us make?

DR. FOX: I think some of the changes in this bill will increase the provision efforts. One, the ability for us in Titles 1 and 2 to do testing, counseling and 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, both HRSA grantees and otherwise for referral into the program.

But I think my main concern is the emphasis within HRSA, I mean HRSA's general emphasis for the department is in accessing 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 hopefully help prevent some cases as well. But the primary emphasis on the part of Ryan White has been care, and I think we want to make sure that the emphasis continues to be care primarily, in the four titles of Ryan White.

CDC's activity and expertise is in prevention and surveillance. Again, we work with them, we have a number of examples of ways we're working with them on both looking at development of data instruments, technical assistance, evaluation, joint planning. But I think the primary activities around prevention probably should be funded through CDC, the primary activities around care should be funded through HRSA. Although there is some overlap.

We're speaking to make sure that the continued emphasis of this act is care, with some expansion around prevention, but mainly with it tied to the issues of primary care and access to primary care for people with AIDS.

REP. BILIRAKIS: One last question. We'll hear later today from a witness concerning the case of fraud in Puerto Rico. Should we be concerned about a widespread or systemic problem in care programs?

DR. FOX: Absolutely not. There were a number of unfortunate incidents. The GAO has looked at these and they can comment for themselves, but the GAO report that's been provided to Congress basically said there is no widespread fraud and abuse within the Ryan White program.

The Inspector General within the last couple of years has looked specifically at the Title 1 and Title 2 programs and in those reports did state that they felt there were adequate controls in place. So we don't feel there's widespread fraud and abuse.

Having said that, I don't think it's in anybody's interest to not have appropriate accountability and controls in this program, so we are very supportive of the audit provisions in this bill.

REP. BILIRAKIS: Thank you.

Dr. Coburn to inquire?

REP. COBURN: Welcome, Dr. Fox. And Dr. O'Neill. It's good to see you both.

I'm somewhat perplexed, Dr. Fox. Is prevention not the best care we can give these folks?

DR. FOX: Mr. Coburn, this is a somewhat gray area, and I'm probably -- REP. COBURN: It's not gray to me. Obviously it's gray to you, but it's not gray to me.

DR. FOX: I'm not implying the provision is gray. I'm talking about the issue I'm 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 and we think that prevention needs to be a significant emphasis on the part of the administration and obviously in Congress.

The Ryan White CARE Act, however, has been primarily about care.

REP. COBURN: I understand that. My question to you is, is the people who are treating people with HIV who have their confidence, can impact prevention more than anybody else in this country. And to say that we have a concern about spending prevention dollars as we interface with people that are infected -- I'm not talking about behaviors that are truly under the CDC's prerogatives. I'm talking about where people are interfacing care. That's where we make the impact in terms of behavior change, condom use, and the other things. And I'm extremely concerned that you are concerned that we shouldn't be having a strong emphasis on prevention as we interact to help those people.

DR. 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 that a lot of activities, whether somebody's HIV positive or negative, to ultimately if they're negative intervene and prevent them from becoming positive in the course of all the things we do around the titles of Ryan White.

REP. COBURN: But the other side of that is if somebody's positive, to make sure they don't give it to somebody else. That's called prevention.

DR. FOX: Exactly. And we're in agreement.

REP. COBURN: There's 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 shouldn't do the baby AIDS that we did. In fact they passed what we tried to pass in 1996. They've seen a marked, marked reduction. As a matter of fact, that's where the majority of perinatal transmission decreases come from the state of New York.

If I read your testimony correctly, it's the Clinton administration's position that New York should not have access to somewhere between $2 to $4 million a year in terms of perinatal transmission funds under our grant program. And they have been successful.

They also, and I would like to introduce for the record if I might with unanimous consent, a report from the state Department of Health from the state of New York, where there has been no decrease in people accessing prenatal care. There's been no decrease in those coming forward to care, because they have mandatory testing if the mother's status isn't known.

The point is, we had one of our members of our committee say Colorado hadn't had one perinatal -- They don't know. They don't test. They have no knowledge of how many babies were born in Colorado. They know the ones they tested weren't, but they don't know the ones that weren't tested weren't.

The point is there's no reason with what we know today for babies, we can prevent all transmission to babies. If somebody who delivers in a facility -- I mean the drug therapies are there.

I guess the question is why would you not want for a state which has done the most to reduce perinatal transmission not to get an extra $2 to $4 million through this program?

DR. FOX: 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 this. The IOM has recommended that. The two societies that provide the primary care for mothers and children, AAT, the 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. We have 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, some parents do.

We believe that for the most part, 99.999 percent of infants get screened. We believe 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 dissent, that people have the ability to opt out, that the practical effect will be very few will.

Again, we think we can accomplish that with probably less governmental intervention than a mandatory bill.

REP. COBURN: I would remind you, Dr. Fox, this isn't mandatory. This is optional for the states. It just says if you're going to do what is best for babies, then we're going to help you do it. And if you're going to stop all perinatal transmission, we want to help you do that. And it's optional.

DR. FOX: My understanding, Mr. Coburn, is if you tie the funding at some point to whether or not a state has a provision, it's like the highway fund. States are going to have to do that to get the money.

Again, we feel there should be informed consent. We agree it should be routine, we agree it should be universal. But we also agree with --

REP. 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.

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.

Ms. Eshoo, to inquire?

REP. 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, doesn't this suggest what I just said, that communities like those in the Bay area will be facing more challenges in caring for people with HIV disease during the next five 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 five years we've witnessed a dramatic drop in AIDS deaths. While this news is tempered with the estimated 40,000 new infections each year, 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 that I just stated, the growing number of people living with HIV and AIDS. So you can you address your answer to --

DR. FOX: Thank you. I'm in a terrible position because my mother told me never to get in the middle of family squabbles. But let me just -- REP. ESHOO: With all due respect, I don't think that this should be diminished as a family squabble. We're having a hearing on legislation that contains provisions that the state of California, which is a nation state, has a cut and then it's accelerated in the area that I point to.

DR. FOX: We have supported and continue to support the issue of looking at the formula. I think one, let me say, that we support having a hold harmless. The administration is not taking a position on the amount of hold harmless, and again, we have not said whether it's two percent, ten percent, or 25 percent. So I think in that issue, we don't 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, and I would agree with you on that.

The whole issue of the epidemic and where the epidemic is going, and the new AIDS cases.

One of the issues I'd 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've done an excellent job in education, but we don't know how to modify behavior, and 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, and 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 don't 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 that become HIV positive. But again, I think the issue of the funding and how that plays out within the cities and states and 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.

REP. ESHOO: If you don't 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's why I said in my opening statement that the, I think the Senate has it right, because it doesn't do the harm that an abrupt pulling out the rug from under a program, which is what 25 percent is, would do.

Is there anything else that you want to add about the upswing in terms of cases?

DR. FOX: I think again, this whole epidemic is changing. I think whether it's, whether it's HIV fatigue, whether it's the fact that we have people because of the new treatments and because of the improved therapies thinking they're somehow immune to contracting HIV, I think it's probably a combination of all of those.

REP. ESHOO: Thank you, Mr. Chairman. I yield back.

REP. BILIRAKIS: Thank the gentle lady.

Mr. Bryant to inquire?

REP. ED BRYANT (R-TN): Thank you, Mr. Chairman. I want to be as quick as I can here.

I have three questions, Dr. Fox, I will ask you, and 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?

Number two, what are the challenges of HIV care in rural America, and what is your administration doing to expand services to rural areas?

Number three, 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'd like to ask you, and I'd like a short answer, if I could, but it is in your testimony you indicate, and I agree with Dr. Coburn about the prevention aspects of this, you indicate that the CARE Act funds, by allowing these funds to provide early intervention and prevention services, that would redirect resources away from the valuable Ryan White care and treatment activities.

Last month your administration used funds from this Ryan White CARE Act to pay for over 100 individuals to fly to the Virgin Islands to a meeting. Another example, the San Francisco AIDS Foundation has over $5 million in salaries alone last year. And this year have 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 defeat as appropriate use of these very valuable funds?

DR. FOX: Mr. Bryant, I don't have enough information on the ballot initiative to comment on it. We obviously don't 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 incidence 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 incidence 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 therapy. There were visits to the clinics there in the Virgin Islands. Again, we think that those type of meetings -- We try to rotate those meetings in high incidence areas.

REP. 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, the $5 million last year.

At this point I yield the balance of my time to Dr. Coburn.

REP. COBURN: Dr. Fox, I think the San Francisco AIDS Foundation really does a pretty good job, and I'm not out to get them and the hold harmless, but we've seen almost a 14 to 15 percent annual increase in HIV funds through the Ryan White CARE Act, and Mr. Porter who chairs the appropriations committee has dedicated to make sure that we're funding an increased amount, and then we've done supplemental money on ADAP.

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 the concern, do you think it's a legitimate concern that the hold harmless, as we've outlined, is too aggressive in your opinion? Is it too much?

DR. FOX: Mr. Coburn, if I were to comment on that it would be strictly my personal opinion.

REP. COBURN: I'd like to have your personal opinion.

DR. FOX: I'd rather not give it, because I'm here representing the administration. I'm not here representing myself.

REP. COBURN: Let me ask you another question. If we could have the posters put up, I think this will show for everybody.

REP. BILIRAKIS: The time has expired. We are going to have a second round.

REP. COBURN: All right. I'll withdraw. We'll just leave the posters up.

REP. BILIRAKIS: Thank you.

Mr. Waxman to inquire.

REP. HENRY A. WAXMAN (D-CA): Thank you, Mr. Chairman. Dr. Fox, I'm 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 who do choose 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 underserved communities. Would you say the bill is successful in this course?

DR. FOX: Yes, sir. Very much so. And we think this will give us the ability to better target resources.

REP. 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've 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 to Titles 1 and 2, but we decided against creating competing funding streams for precisely the reasons you've 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, and I think it's very important that we make clear that this is the intent of the House bill. Would your staff be willing to joins us in clarifying for the report language the policies underlying the House provisions?

DR. FOX: Absolutely, congressman.

REP. WAXMAN: I also appreciate your concerns about the Title 2 supplements. 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 database criteria. We asked you to do this in 1996, and we want you to try again. It's very important and it would create a more equitable grant program. Can we count on your agency to help us accomplish these goals?

DR. FOX: Mr. Congressman, we'll work with you on this any way we can.

Let me just state that we are administratively extremely thin the AIDS Bureau. We have a small number of MTEs for the amount of work that we're doing. The planning grants, we have 60 new planning grants, based last year working with the CDC. We support the issue of supplemental grants. I think we want to do it, though, 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.

REP. WAXMAN: You expressed concern about the perinatal HIV program, and 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's a set-aside for mandatory newborn testing states, but unexpanded set-aside funds are also rolled over back into this $15 million. And 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 4 community groups, wouldn't you agree the provision goes a long way toward providing additional resources for voluntary counseling, testing, and outreach of pregnant mothers?

DR. FOX: Yes, sir. We would agree.

REP. WAXMAN: We'll hear later today from a witness concerning the case of fraud in Puerto Rico, and you've already indicated that we have these kinds of situations, but you don't think we should be concerned about a widespread or systemic problem in the CARE Act programs.

DR. FOX: Mr. Waxman, the GAO has looked at it and said there's not a widespread problem. We, again, agree with the provisions in this bill. We want to do everything we can do within reason to make sure that these funds are well spent, but we don't believe there's a widespread problem.

REP. WAXMAN: You've had the opportunity to review the House and the Senate bills. We take a different approach to the new Title 2 supplement, making it broadly available instead of limiting it to a small number of cities. Isn't it possible the states will want us to use the funds, will want to use the funds in rural areas or towns which are too small to qualify under the state's definition of emerging communities?

DR. FOX: I think actually that's one of our concerns about the comparative process of the type of supplement awards, that some of the larger cities who have the ability to put together a really shiny grant application are going to be able to do that, and comparatively 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 underserved communities, those are also the communities have 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 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.

REP. BILIRAKIS: Thank you.

Ms. Capps to inquire.

REP. CAPPS: Thank you, Mr. Chairman, and I want to thank you Dr. Fox for your cooperation and 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 the subcommittee. I spent a lot of years as a public health nurse in my community and am very aware when the Ryan White Act was enacted from those communities' perspective.

I'd like to use my time to explore two areas and learn from you. One, on the relationship between two governmental agencies in the area of prevention -- CDC, just if you would get into the nuances of that a little bit more.

Your agency knows a lot about AIDS transmission and of course it's part of the prevention activity, and yet it belongs, the responsibility of prevention belongs to CDC as their mandate, but you do certainly cooperate in that area. That's part of the ever-changing picture. It's challenging for me to get a grasp on how this population and the demographics have moved around in this brief ten year period of Ryan White.

And the second part is equally challenging with the different disease entities in terms of 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, and they feel immensely thankful that they can be part of the process of deciding where the dollars will go.

So again, it's a congratulations, but also a seeking to learn from you.

DR. FOX: 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 and since I'm the first administrator we've worked hard to try to make sure we had appropriate interface with both that agency and with prevention services.

The first is, we have a number of activities that we've been working jointly on looking at development of surveillance and data instruments across the two agencies.

We're working on the job evaluation projects, we're working on some joint best practices models, looking at the interface between prevention and services and how to better do that.

Then finally, we've been working on issues of locally how to get the services together, how to have the two planning councils 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 staff to talk about issues that we're working on. Dr. O'Neill may want to elaborate further. But we do have a lot of activities going on with CDC. We're going to continue to try to improve that, but in all areas -- data, technical assistance, evaluation, local planning, we're working joint with them.

REP. CAPPS: Thank you. I guess in light of all of this, and I'll wait to hear from your friend, with all the effort that's gone in the last ten years it's really important that we stay on top of this now. We're concerned about our communities becoming complacent and certain populations relaxing in the behaviors, but we certainly don't want to be either. That's, to me, a real challenge and a real message that I hear today in the questions between you.

DR. 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 care.

DR. JOE O'NEILL: I would just add that we're really treading in an area that is, this linkage between prevention and care is not one that I think there's any clear cut right answer to at this point. By that I mean that it's -- 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 is actually an area that HRSA has great expertise in and that our clinics and our sort of -- When you think about what we do, most everything that we do is about supporting one on one intervention between provider and patient, and we're very committed and very interested in continuing to expand the ability in that, doing prevention in that area.

Way on the other end it's very clear that we don't do population based broad surveillance and large programs. But there's this area in the middle that I think quite frankly we're all trying to grapple with as health professionals and as legislators and everyone to try to figure out what's the optimal way both to accomplish this, and what's 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 I think very could well have some disagreement, but the overall point is I think very clear that we've got to do a better job in prevention and that there's a tremendous area in this one on one clinician to patient setting. As you know, as a public health nurse, you can really accomplish a tremendous amount that you're not going to get with broad based effort.

REP. CAPPS: I appreciate it, and I yield back.

REP. BILIRAKIS: Thank you.

Ms. DeGette?

REP. 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've 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'm wondering if you can talk briefly about what additional steps you think we can take as we talk about the future of the CARE Act.

DR. FOX: Let me say first we serve youth through all of the titles of Ryan White currently. We have a specific emphasis in Title 4 on youth and we've 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're working on as well.

As I said, I think the ability to expand testing, counseling, referral in Titles 1 and 2 along with some opportunities to intervene with youth as well as with others. Finally, we've had some internal discussions, you may not be aware, the agency administers the abstinence program, one of the abstinence programs within the department. And we've had some internal discussions about ways to link perhaps some of what we're doing in Ryan White with what we're doing in some of our abstinence sites.

Obviously if we're discussing abstinence with kids we ought to be talking about the risks of HIV/AIDS. So I think there are some opportunities there that we can take advantage of with other grantees that we have, and I think those are things we currently can do.

Obviously it's a huge area. You know the number of 50 percent of the new individuals are among individuals under age 25, so this is a huge area of concern for us.

REP. DeGETTE: Thank you, and let me follow-up on another area I'm concerned about, and that's the role of Medicaid and the CHIP program in providing increased access for people with HIV/AIDS. I'm 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.

DR. FOX: Yes. The administration's very supportive of looking for ways to working with states on ways to try to expand, get into family coverage, and to broaden the coverage. Certainly we want to cover all the kids, but I think we're interested in going beyond that 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 (ph) in the Title 2 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 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 we have not been able to mandate, because obviously Medicaid's a state program, is to try to jog on and encourage states to really look at what they're doing with their Medicaid programs, and to not limit prescriptions, to try to maximize services to people with AIDS, then we can use Ryan White, the ADAP funds, for those people that don't have Medicaid.

So this is an important issue. It dramatically impacts the waiting list and the provision of services to the Ryan White CARE Act.

REP. DeGETTE: And just to follow up, it would seem to me that you really need that continuum of care for pregnant women, so if you're going to cover them if they're eligible for Medicaid, similarly if their child who's born may be covered by CHIP, it might be more effective to carry that pregnant woman under CHIP as well.

DR. FOX: Exactly. And let me tell you one other thing that we are exploring and that's the issue, I'm trying to look at the interface, at the community and state community level between Ryan White funding, between Medicaid, and between Medicare. 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, and that's something again, I think we have a lot of work to do in the federal government.

Let me --

REP. DeGETTE: Let me just interrupt for one second and say don't forget CHIP in that equation because what we're 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've had in implementing that program is that it does not interface well with the existing issues.

DR. FOX: Exactly. There are huge opportunities under CHIP, as I'm sure you're aware, to expand coverage for mental health services by 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, and some states are taking advantage of it. Others aren't.

Let me just mention one thing that Joe just provided me. We have just put together the first text ever on the guide to clinical care for women with AIDS and 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're going to be publishing it in Spanish. Again, it's just one example of some things we're trying to do to help communities deal with this issue.

REP. DeGETTE: Thank you.

Thank you, Mr. Chairman.

REP. BILIRAKIS: Mr. Towns to inquire?

REP. TOWNS: Thank you very much, Mr. Chairman.

Let me begin by saying, are you pleased with these planning councils? (Laughter)

DR. FOX: Mr. Towns, again, this whole -- I think the planning councils do 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 we are very supportive on trying to find who's not being served in the community. And we think that the planning council recommendations around care should be based on what the needs are in that community. It's going to vary in every community.

We think that, again, this should be an emphasis on finding who is not in care, trying to get them in care, and then providing that array of support services to keep them in care.

So I think 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.

REP. TOWNS: How does this bill we're 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. And to be specific, 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, and then the next cycle around it would not be funded. In the mean time you draw all this modern equipment in there to provide food services and now they're not even funded which becomes a waste of money in the sense of the word, because if they're not funded, therefore the program doesn't operate, and what happens to the equipment? It's just there.

So how does this address some of the concerns that the Congressional Black Caucus has?

DR. 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's going to push the services more towards services to women. And I think it's going to help us better target and resource as to where the epidemic actually is now.

The second thing is, this bill provides for a series of capacity grants that we cannot currently do, that are going to allow us to go into a minority community and work with a minority group who perhaps wants to provide services but doesn't have the capacity to do that now, and 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 don't have that capacity to do that in all the titles of Ryan White.

We think this bill is going to give us the ability to do that, we're going to be better able to target funds.

Finally, the provisions around looking at quality and looking at outcomes is something we're very supportive of to make sure that every dollar we spend helps improve care in some day.

Finally, the issue of tying, making sure that all of these services within a community, provided in your community are tied to enhancing somebody's care. Making sure that they get in care, stay in care, or get better care.

This bill, again, supports that, and we think it will help very much to make sure that resources are more appropriately targeted and will follow the epidemic.

REP. TOWNS: Let me close by saying, because 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 -- talking about this committee?

DR. FOX: I don't know that I have a suggestion to say that -- The majority of the provisions of this bill we are very supportive of, and we think this bill really does reflect what we need to do with the 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 these dollars are well spent.

REP. TOWNS: Mr. Chairman, let me just indicate that I plan to send two questions and hope that I can get an answer from him in writing.

REP. BILIRAKIS: Without objection, it's always the case with our witnesses.

DR. FOX: We'd be pleased to do that.

REP. TOWNS: I'll yield back.

REP. BILIRAKIS: Thank you.

We're going to go into hopefully a very brief second round.

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, the more challenges that we're faced with now because the epidemic is changing.

Why is the epidemic changing?

DR. FOX: Well the epidemic is changing for a lot of reasons, Mr. Chairman. One is we have a pattern of substance abuse in this country that is providing for infection in many instances through heterosexual sex, that's taken the epidemic into the realm of women. We have, again, minority communities for a variety of reasons that don't have access to care. So there are a number of reasons why the epidemic is changing, but we certainly feel the CARE Act and I think the GAO supports this, is providing funding to the populations that reflect where the epidemic is going. Forty percent of all new infections are in African Americans, 45 percent I think, and 20 percent 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.

REP. BILIRAKIS: All right, but I think that's the point. I've cosponsored the CARE Act, we're highly supportive of it, we all are. It's going to do an awful lot of good so we're not talking either/or here. But I just have the feeling, based on your testimony that we're not emphasizing enough the prevention. Forgive me, Mrs. White, I think she'd rather have Ryan here now, rather than be in here testifying for the Ryan White CARE Act. The Ryan White CARE Act was very helpful to Mrs. White and that's what it was intended to do.

My personal opinion, honestly, is that we're not emphasizing prevention adequately.

DR. FOX: Mr. Chairman, I think Dr. O'Neill will maybe 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 focus on care, with a strong link to prevention and provide prevention. As Joe said, it is an issue that again is concerned -- We want there not to be any AIDS cases, but I think we want to make sure 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're saying is our primary emphasis and our primary expertise within HRSA is care. We're not an expert in -- We're not experts in surveillance and data. We need to make sure that prevention is a part of what we do, but this act is about care. Again, I don't think we're disagreeing, I just, I'm having difficulty clarifying my point.

REP. BILIRAKIS: All right. I'm going to yield the balance of my time to Dr. Coburn.

REP. COBURN: Well, I want to go back to my charts there for a minute. This information was supplied by the GAO. It depends on which side of the bay you're on, whether or not you get adequately funded. You can look at San Jose and you can look at Oakland, and then you can look at San Francisco.

What I'd like for you to do is to defend for me the funding for San Francisco at twice the rate of everybody else in this country per AIDS case, and I'd like you to defend the administration's position that that's an adequate representation of what we ought to be doing.

DR. FOX: Mr. Chairman, I'm not going to try to --

REP. COBURN: Don't get me in trouble. I'm not a chairman.

DR. FOX: I mean, Mr. Coburn, excuse me. (Laughter)

Again, we agree there's a need to look at the distribution of the funds, and we don't 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're putting our Title 3 grants. It's 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 don't have a specific position on how the funding ought to be changed.

REP. COBURN: Except the supplemental funds mirror that distribution. Distribution in every case. The supplemental funds mirror that. So the supplemental funds will be inordinately high in those areas that are inordinately high.

I guess the answer is you can't defend that, and nobody really can defend it. The fact is the Ryan White fund has been going up on average of 29 percent. The first year in terms of hold harmless is 2.5 percent or 2.4 percent, and this year I believe we've increased it 14 percent. So the net effect, San Francisco will still see a net increase in dollars.

So what we need to do is to make sure 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, and that's what we're trying to do.

REP. BILIRAKIS: The gentleman's five minutes is yielded to him now, as per the suggestion of Mr. Brown. So please continue for another five minutes.

DR. FOX: We would agree with you, Mr. Coburn. I think we feel like that you should not be disadvantaged by where you live, to what kind of care you get, and we agree with that.

REP. COBURN: I want to just enter a couple of other things in the record. One is, I agree with the GAO, there's not tons of fraud in this, and I think -- I also want to compliment your agency. We have worked with them and they've been fantastic. Cooperative in giving us good insight, not afraid to tell us where we're wrong, and doing so in a manner that allows us to come to a conclusion. I think HRSA's one of the reasons we were able to work with such a good agreement with Mr. Waxman, and I want to compliment your people for that.

But I'd like unanimous consent to put this in, because this is just in Dallas, hundreds of thousands of dollars, one clinic, wasted, that didn't go to treat inner city black for HIV.

REP. BILIRAKIS: Would the gentleman identify that, what --

REP. COBURN: This is an article from the Dallas Morning News dated 6/16/2000.

REP. BILIRAKIS: Without objection, that would be made part of the record.

REP. COBURN: We talked about the ILM recommendations and I have them here. What's the administration done to implement these recommendations?

DR. FOX: Mr. Coburn, the Ryan White CARE Act, as you know, particularly through Title 3, has had a fairly significant involvement in looking at perinatal transmission. A lot of effort toward trying to make sure that women are both identified and started on appropriate therapy. We've had a lot of activities in that area.

REP. COBURN: Since this report has come out, what have been the steps the administration has taken since they came out and said that we ought to have universal testing with an opt out for all pregnancies?

DR. FOX: I'm going to defer that to Dr. O'Neill.

DR. O'NEILL: There's a number of things, one that I'd call particular attention to. It's even actually in anticipation of the direction the report is going, and 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, and did very aggressive training across the nation to all of our health centers -- non-Ryan White or Ryan White -- around this issue.

We've obviously done a lot of work, particularly through our Title 4 program and I think you're going to be hearing more about that from Dorothy Mann when she speaks. But we take it very seriously, and again, would want to work with you all on any additional ideas that would be helpful.

REP. COBURN: I'd 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 get prenatal care if in fact they're asked to be tested are untrue?

DR. O'NEILL: I am embarrassingly not familiar enough with the New York data to give you an exact answer.

REP. COBURN: They've actually had an increase in the number of women seeking prenatal care since that was passed. So in fact the claim against us doing that nationally and against New York doing it, the actual, the opposite of that has been the effect, and we should all recognize that. A woman cares for her child. If they have something that's going to hurt their child, they want to know about it.

Part of the politicization of the AIDS virus has hurt us deeply in this country in handling it properly, and 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, and he recognizes all these issues. I cannot be complimentary enough of his service to us in helping put this bill together.

But we have to look at what we're taught as physicians, and know We can be caring and we can be compassionate, but we have to recognize the truths of science in terms of this disease, and the reason prevention is such an important part of this bill trying to move back towards that, is because that is the best care, and I have to say I know Dr. O'Neill agrees with that in terms of his interface with his patients.

And 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 met with 27 African AIDS directors less than a year ago, and I believe that one of the reasons that Africa's 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 questions for you, I would just beg you as you administer these funds now and in the future, that you recognize the important nature -- and the other personal accountability nature is that if you have this disease you obviously have a responsibility not to ever give it to anybody in any way.

So when we hear the data of what's happening in San Francisco now, we all know what's happening. We know. The news reports are there, the interviews are there, the public health data. We know why there's a rise, because people are ignoring prevention and are having exposed contact.

It's okay to talk about that. That's what's really going on. That's why it's rising again, because it's now being seen as a chronic disease rather than a life threatening disease. I just think the emphasis has to be there.

I'm sorry I went on so long. I yield back.

REP. BILIRAKIS: Mr. Brown?

REP. BROWN: Mr. Chairman, I yield my five minutes to the gentle lady from California, Ms. Eshoo.

REP. ESHOO: I thank the gentleman.

REP. BILIRAKIS: I would suggest that maybe the gentle lady take your five minutes and her five minutes.

REP. ESHOO: I appreciate that very much.

There are several things that have been passed out here that I think really need to be corrected.

First of all we have charts up there, which I'm glad that one of the staff people gave me a copy of because I think it's an eye test that we would all fail. But let me just get into some of the funding issues that Dr. Coburn has suggested are totally unfair by this bar graph down at the bottom.

When I talk about, when Dr. Coburn talks about San Francisco funding he's talking about Bay area funding, number one.

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, and 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's up there, but what is the case today. And this flat funding demonstrates over the last five years that the Bay area and San Francisco's actual dollars have shrunk.

So this is a debate about between those who argue for per capital funding, but they fail to acknowledge that Title 1 funding over the last five years -- this is a fact. You can take all of these and switch figures around and use the word, the beautiful word Saint Francis, San Francisco. Since fiscal year 1996 it has essentially remained flat, while overall Title 1 funding has increased nearly 50 percent.

Now the formula that's been placed in the House bill, which is very different than the Senate, does not recognize that services will be destabilized.

Ryan White funding, if there was anything in the 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 destabilize that.

I think something the gentleman said, that no area, geographic area, should be destabilized or be held, to be penalized. I agree with. But that's essentially where it is with the Bay area today.

So I think we do a real disservice in terms of this entire debate to somehow suggest that the Bay area gets more funding. They don't.

Now what the Senate recognizes in their language is that they doubled the hold harmless clause. I think that's a very important aspect for us to appreciate here, because again, they recognize what destabilization 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 this does, what the House language does, it's a $4.5 million loss on top of that to the Bay area.

That's why I raise my voice in opposition to this and I think it's very important for the record to show that. This per capital analysis of the CARE Act funding is really misleading, very misleading.

If I said over the last, from 1996 through the year 2000, this is a fact. This is how the money has flowed.

Now I don't know if there's 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 five years.

Again, the Ryan White CARE fund and the Act were all about not leaving any area in a harmful way, and the destabilization of funds is going to directly affect those -- all of this testimony that Dr. Fox has talked about, the care of people, the services for individuals, all of that continuum of care that we are so proud of.

And I might add that the Bay area and San Francisco have been 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 a real model and example for the rest of the country on how to care for people.

REP. TOWNS: Would the gentle woman yield?

REP. ESHOO: I'd be happy to.

REP. TOWNS: It's interesting when you look at this chart the kinds of things that you see. What I see, when I heard your comments, it seems to me we're arguing in the wrong direction. I think we should be arguing that every EMA be brought up to San Francisco, and I think that's what we should be arguing. I'm having difficulty with this.

If we're serious about what we're doing, why don't we make that argument? We still talk about a surplus, and it seems to me that's the kind of way we should go.

Even if you talk about the $8 million that we're talking about from San Francisco and you spread it across the 31 EMAs, what are you really doing? What are you really doing?

I think, Mr. Chairman, I think we should seize this moment, take advantage of this opportunity and let's deal with this issue once and for all. I think that this opportunity is here. Let's take advantage of it now.

We know the services are needed all over this country, and we need to provide them.

I yield back.

REP. ESHOO: I thank the gentleman. I think he's 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're delving into one EMA and disrupting the dollars, actually extracting even more dollars out of that EMA and hurting the services there.

I really don't 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, and I think this is a real unfairness. I will keep speaking to it. And 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're going to destabilize. That's 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, "Do no harm". This hold harmless clause is being turned on its head and I think it's unfortunate that somehow this language has made its way into the House bill.

This is all part of the record here. I certainly hope -- I don't 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.

I'm 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.

REP. COBURN: Thank you, gentle lady. A couple of things that need to be noted, if I might add, is number one there is no limitation on funding in this authorization whatsoever, so if we can appropriate it we certainly can do it, Mr. Towns.

Number two, --

REP. TOWNS: Will you join me in that effort?

REP. COBURN: Absolutely.

REP. TOWNS: Thank you.

REP. COBURN: Secondly, I'd like the unanimous consent to enter into the record what was entered into the record when we had this discussion five years ago, the testimony of Mr. Shepherd Smith who, Americans for a Sound HIV Policy, and we had the same thing there.

The agreement was that we knew that we would bring this -- when we did Ryan White five years ago we all agreed that we were going to come to this point. To act like we're not going to do that now is somewhat disingenuous.

The second point --

REP. ESHOO: Would the gentleman yield?

REP. COBURN: Let me finish --

REP. ESHOO: When you said five years ago we knew we'd come to this point. What does that mean?

REP. COBURN: If you read the Ryan White --

REP. ESHOO: -- here five years ago. I wasn't.

REP. COBURN: I was here five years ago as well. In the Ryan White CARE Act we had an agreement. There was, we had an agreement, if you'll read the Ryan White CARE Act, and I'll be happy to pull that 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.

REP. ESHOO: I --

REP. COBURN: The second point I would make --

REP. ESHOO: On the whole --

REP. COBURN: -- the GAO's testimony on page nine, and also on page two, shows that we're talking about EMAs, not the Bay area. There's three EMAs in the Bay area. And we're talking about one of them that is markedly disproportionate to the other.

The other point I would make and then we'll move on to the next panel, if the gentle lady 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've 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've appropriated this year, the San Francisco EMA will receive no decrease in funding.

With that, I close my comments and ask Mr. Green -- He's recognized for five minutes.

REP. GREEN: Thank you, Mr. Speaker, and again, I apologize because our other committee's going on, plus bills on the House floor that I couldn't be here.

Dr. Fox, one of my concerns, I represent a district, my only problem with Ryan White in the last four terms is, and it was really a local problem we found out, is the services not being provided to the growth populations.

One of my concerns, 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/Waxman bill can address the need for serving this higher growth end populations? Along with African American women?

DR. 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, more accurately where the epidemic is doing.

The other thing we've done is we've actually used the Title 3 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. And we've primarily targeted the Title 3 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.

REP. GREEN: I know in the Houston area we are expanding our EMA, some of the growth in East Texas or the rural area, and there is an effort to expand into that area.

One last question and one of the concerns, I'm now seeing more and more mothers with young children who are affected with the disease and are the existing programs including housing and family housing initiatives adequate for that, and what can be done to ensure the needs of the families are met also? These women and their families.

DR. FOX: One of the things that we support in this bill that's 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 to CARE, obviously, to family planning clients.

I know because we, I know because we also oversee the Title 10 family planning budget, there's been increased cooperations there to help counsel women coming in for contraceptive services around the issue of AIDS and STDs.

So I think there are again are 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 of care.

REP. GREEN: Thank you, Mr. Chairman.

I yield back my time.

REP. BILIRAKIS: Mr. Barrett?

REP. BARRETT: Thank you very much, Mr. Chairman. I appreciate the fact that we're holding this hearing. I certainly am proud to be a cosponsor of this legislation. I think that it can improve on a law that I consider to be a very good law. And 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 don't allow this to die over a funding squabble.

Dr. Fox, I don't know if you have any comments in response to the funding issue that was raised here.

DR. FOX: Obviously it's a complex and controversial issue. I think the department has recommended that we look to the IOM to do a study and assist us. As I said earlier, there are a lot of factors. The GAO will state some of those. But there are a lot of factors where the Title 3 grants are going and what's happening with Medicaid that impacts on the resources within a community. We've recommended that IOM give a thorough study to this. We've not recommended any particular approach to change but do understand a lot of concerns and inequities and we think this is one way to go about it, to try to get a set of recommendations that we can bring back to Congress and then move forward from there.

REP. 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 $100 and $200 hit. Is that consistent with what your --

DR. FOX: We don't take issue with any of the accuracy of the GAO report. I think there are additional factors that impact on resources in the community that are perhaps not in there, but we don't take issue with what they have in the report.

REP. BARRETT: Thank you. And again, I think for those of us who don't come from areas that receive a great deal of funding, it's important that whatever changes we make do not have a negative impact on us. And again, I don't 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's something that we would obviously have some concerns with.

I would yield back the balance of my time.

REP. COBURN: Thank you. The gentleman from Ohio is recognized for five minutes.

REP. BROWN: No questions, Mr. Chairman, but I am looking forward to hearing later witnesses. Thank you.

REP. COBURN: I thank 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's very important that some of your staff is here for the rest of the testimony so that that input can be considered by you.

DR. FOX: Mr. Coburn, we're going to all stay here including myself, so we'll be here throughout the balance of the hearing.

REP. COBURN: And we will break for these sets of votes, and then we'll come back right after the last vote.

(Recess.)

REP. BILIRAKIS: Again, our thanks to this second panel. Not only for the knowledge that you're going to impart to us, but also for your patience and waiting as long as you have. Actually it's not as long as usually the second panel has to wait around here. (Laughter)

The second panel consists of Ms. Janet Heinrich, Associate Director of the U.S. General Accounting Office, accompanied by Mr. Jay Foster, Assistant Director; Ms. Jeanne White, National Spokesperson for 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, Columbus, Ohio; Ms. Dorothy Mann, Board Member, AIDS Alliance for Children, Youth and Families out of Philadelphia; Mr. Jose F. Colon, Coordinator, Paciendas de SIDA Pro Politica Sana -- I probably messed that all up -- but 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, and I'll turn this on to five minutes and hopefully you can stay around during that period of time but we won't cut you off if there's a point you're trying to make.

We'll start off with Ms. Heinrich.

MS. JANET 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 with an eligible metropolitan area which receive grants under both Title 1 and Title 2 of the Act as opposed to states which receive only Title 2 grants; and the current effect of the hold harmless provision adapted in the 1996 reauthorization.

Seventy percent of Ryan White funds are distributed by formulas under Titles 1 and 2 of the Act. Title 1 has provided $527 million in assistance in fiscal year 2000 to consortia of local service providers in eligible metropolitan areas. Title 2 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 2 funding growth has resulted in increases in the drug assistance program.

With the current rate of new infections remaining at approximately 3,000 cases per year, AIDS deaths declining, continuing progress in 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 three 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 exceeds 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 are reasonably complete.

Regarding the second issue 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 1 funding to a metropolitan area, and counted a second time in distributing Title 2 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; and 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 1 in the 1996 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 1980s had died yet were still counted in the formula.

The reauthorization changed this practice, shifting funding away from metropolitan areas with high proportions of disease cases and toward those with higher proportions of new 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. By 1999, San Francisco was the only metropolitan area that continued to benefit.

In chart three you can see that San Francisco received 80 percent more Title 1 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 sizeable.

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 dread disease.

When data on all living 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.

REP. BILIRAKIS: Thank you very much, Ms. Heinrich.

Now the very courageous Jean White, national spokesperson for AIDS Action. Jean, please proceed.

MS. JEAN WHITE: Thank you, Chairman Bilirakis and Dr. Coburn and members for this 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 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 young people who participate in AIDS Action, Pedro Zamore (ph) Fellowship program. Rachel French (ph) is attending Duquesne University in Pittsburgh; Margarita Tascanado (ph) will be attending the School of Public Health at UCLA; and Edward Hugh 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 authorize 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 faces 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 number 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 sons 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 three months to live. He lived for five and a half years with AIDS, and 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's Bush's commission on AIDS.

"Because of a 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 that 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.

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 wasn't going to let me be silent.

I then thought of something Ryan had said that gave me strength to come to Capitol Hill. He said, "Mom, I'm not afraid of dying. I know I'm going to a better place. It's 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 passed the original CARE Act. I'm so proud and honored that Congress named this bill after my son Ryan.

While this legislation could never replace my son or the emptiness 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, 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.

REP. BILIRAKIS: Thank you very much, Jeannie.

Mr. Tom Liberti. Again, welcome, from very hot Florida to hot Washington.

MR. TOM 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 and 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, surveillance in our state.

I am pleased to have the opportunity to speak to you today regarding HIV/AIDS in Florida. 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, 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, particularly blacks, have been disproportionately affected by HIV and AIDS and the numbers of AIDS cases and HIV cases in their ranks have been increasing at an alarming rate.

Of the 78,000 reported AIDS cases, 46 percent are black, 39 percent white, and 15 percent Hispanic. Males account for 78 percent of the cases, and females account for 22. I've 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 next 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 2 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 anti-virals, 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 4,336 people who died of AIDS in Florida. I'm happy to say in 1998 there was 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 a changing epidemic.

We strongly support the transition which will promote more effective targeting and distribution of scarce 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 community. While blacks comprise 13 percent of Florida's population, they account for 60 percent of the most recent report HIV cases.

As a result of this alarming trend, numerous minority initiatives have been implemented including the most recent 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 2 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, the provision for partner counseling and referral activities, are effective intervention for reaching individuals who are at high risk for HIV infection and unaware of their risk.

REP. BILIRAKIS: Please summarize, Tom.

MR. LIBERTI: Thank you.

Since the Ryan White CARE Act was passed in the early 1990s, 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'm available for questions and comments as you work on this legislation.

REP. BILIRAKIS: Thank you very much.

Dr. Birkhead?

DR. GUTHRIE BIRKHEAD: Thank you Mr. Chairman and members of the subcommittee. My name is Guthrie Birkhead. I'm the Director of the AIDS Institute at the New York State Department of Health. The AIDS Institute administers the Ryan White CARE Act Title 2 funds that go to New York State, and I'm 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, 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 the cases -- more than in other areas, and injection drug use is the most common risk factor reported in 40 percent of cases.

Persons diagnosed with AIDS are just the tip of the HIV iceberg, and it is estimated that the number of persons living in 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 two years.

New York began its response to the HIV/AIDS 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 Medicaid and state grant dollars. When federal Ryan White funding became available, CARE Act funds were used along with increases 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 essential, 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 2 funds with a significant contribution of Title 1 funding from the Title 1 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 then 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. Monthly utilization has increased from 137 percent up to 10,900 served last month. Monthly expenditures have increased 450 percent in the last five 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 anti-retroviral drugs in combination, while another 11 percent were taking two-drug combinations. We've 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, 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 in quality assurance case management, and very important treatment adherence and education which allow people to stay on schedule with their medication.

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 systems 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 abuse.

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, and have brought services to the clients via mobile vans and home visits.

CARE Act funded programs in conjunction with Medicaid and state funds have resulted in increased access to care, reduced hospital costs, and reduced morbidity and mortality. Hospital utilization in the last three years fell 30 percent. Average length of stay fell 45 percent. And HIV/AIDS deaths 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 1 and Title 2 funding formulas from AIDS cases to ones based on HIV cases. It will take states like New York a couple of years after embarking on HIV reporting to get our system fully operational and providing quality data.

An essential component of the formula is the hold harmless provision, and the current House version leading up to 25 percent reduction by the fifth year, we don't support. We do support the hold harmless provisions in the Senate bill which call for reductions of no more than two percent per year as it's been in the past.

Third, we do support the House provision that adds supplemental components to Title 2. It's the increase in Title 2 base funds is at least $20 million over FY 2000. This supplemental component will support competitive grants to states that have communities with severe need. The Senate's bill provision which relates to supplement components creates Title 1 like awards, and we believe the House bill would more effectively address the priority unmet needs for all Title 1 areas.

But we do support grants for testing and treatment of pregnant women and infant. In New York, as 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 testing during prenatal care. We understand that this funding will not be at the expense of other Title 2 programs.

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 use of the CARE Act funds for intervention services, early intervention, which allows use of Title 1 and 2 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 settings, community based settings, not just medical settings. Often providers best able to reach underserved 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, and I look forward to your questions.

REP. BILIRAKIS: Thank you very much, Doctor.

Mr. Davy?

And I might add that as promised, Doctors 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.

MR. JOE 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 needs 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 each of the last three years, and the complexity of our clients' needs has changed dramatically.

Today you've 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 of 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'd like to thank the members of Congress for producing legislation that works very well for addressing the needs of our clients.

I appreciate 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 these needs.

I was particularly encouraged to see the final draft of the bill the representatives' recognition of the success of the CARE Act. Many of the provisions of 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 2 supplemental grant program.

This important provision would recognize communities which do not qualify for Title 1 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 the community's existing service delivery system.

You'll recall that in the last reauthorization, hold harmless was meant to be a stop gap for communities who 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 the 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 and 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 confident professional staff to manage and administer those programs.

We are concerned about any provisions and reauthorizations 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 1 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 the mandatory testing law for the reduction of perinatal transmissions of HIV. We are encouraged by the bipartisan agreement reached by Representatives Coburn and Waxman.

While we at the task force certainly encourage the development of programs that will reduce all transmissions, 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 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 my friends and clients.

Finally, I urge you to the swift reauthorization of the Ryan White CARE Act.

Thank you.

REP. BILIRAKIS: Thank you very much, sir.

Ms. Mann?

MS. DOROTHY MANN: Good afternoon Mr. Chairman and members of the subcommittee. I'm 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 4 of the Ryan White CARE Act and receives additional support from Titles 1 and 2.

I'm 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 13th international conference on AIDS currently taking place in Durbin, 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's abundantly clear with 40,000 new HIV cases a years, 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.

I'd like to take a moment to comment 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 at CDC, but the CARE Act has a critical role to play in helping to stem the spread of this disease.

Titles 1 and 2 have been explicitly described and allowed to do case finding as a new responsibility in the House bill, and 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'm 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 4 has had the most emphasis on integrating HIV care and prevention. At my Title 4 project in Philadelphia, for example, reproductive health specialists funded by Title 10 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. And 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 who's 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. Forty thousand 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.

REP. BILIRAKIS: Thank you so much, Ms. Mann.

Mr. Colon?

MR. JOSE FERNANDO COLON: Buenas tardes, Chairman Bilirakis, Congressman Coburn, Congressman Waxman, members of the committee. Saludos. The word saludos means greetings in Spanish, but it also relates to the word salud which means health.

My name is Jose Fernando Colon and I live in San Juan, capitol of Puerto Rico. I am part of a group called Pacientes de SIDA Pro Politica Sana and 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 have over those affected by HIV/AIDS in Puerto Rico and in the continental U.S.A. as well.

Since March 11, 1999, Haciendas de Cita pro Politicasana has been working as an HIV/AIDS organization in reaction to the broad commitment of the San Juan AIDS Institute by its former directors and administrators.

Our goal and first prior 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. Gudy (ph), Soto Majur (ph), Bodel (ph), and also USA vs. Luis Dubon (ph) and Jorge Gariz (ph) should serve as an international soundboard so that something similar is never repeated.

$2.2 million were embezzled for personal and political use. That was reflected by the plea of guilt of five of the accused and the convictions of Gudy, Soto Majur, Bodel, Dubon and Gariz. Most of the persons were prominent lawyers, accountants, and sad to say, doctors. Revealed during the testimony of the case, horrifying facts such as a box full of over $100,000 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 and $20,000 used in restaurants and happy occasions, were used by the administrator and Dr. so-called Gudy who masterminded the whole fraud.

Money intended for patients was used to pay for maids, luxury cars, cocktail parties, trips, and a $47,000 press conference. What were they giving out? Mont Blancs, 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 (ph), my companion that passed away, and I remember that at the hospital a bill that cost of $53,000 which were able to pay only because of beneficence, Dr. Jorge Gariz, an infectologist (ph), came in, opened the curtain in the room, asked my partner's name, and 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 and quality life if this hadn't 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 accusations 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?

Amongst those accepting guilt is a former senator and former head of the health commission of the Senate, Dr. Eduardo (unintelligible). 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 statements to this effect. Some of the politicians mentioned during the trial have been Mr. Eduard Liso Servello (ph), former mayor of San Juan; Jose Gonzales Nervado (ph), former vice president of the House of Representatives; and our present governor, Dr. (unintelligible).

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 telling her 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 oft he appropriate use of funds. We also again asked Honorable Donna Shalala for an explanation of why between the year 1988 and 1994 there were no audits or reports made to the federal government. This was stated and testified in court by Mr. Lawrence Arpool (ph), an official from HRSA that said, and I quote, "There are no indications that such reports were ever prepared."

I want to quote the words to me said in a conference call by Mr. Douglas Morgan, another official from HRSA, that "some mistakes have been committed." And when I asked what were the mistakes and by whom, I got only silence as an answer.

This is continually happening not only in Puerto Rico, I assure you, in other parts of the United States. In Puerto Rico we're having many problems including a health reform that we don't know if it's 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 don't know how they can do it because it's difficult living outside of Vieques. You can imagine having AIDS there.

And 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.

Tools that will help us help those patients like me to be part of the councils, to be part of the planning councils, to become voices, and not just people that receive salaries. Most of the salaries are immoral because of the (unintelligible) whatever you call it in English. Some of these salaries are absolutely immoral.

We want to clearly state that whatever investigations or audits are done in the accountability measures that you take, 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. And to do this we need your help.

Because 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. And 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's a grotesque reality.

We have to get this message clear to those people that still don't believe that HIV and AIDS can touch them. That is prevention, Dr. Coburn. I agree with you. We do have to have prevention. But we have to have prevention, but we have to have accountability on those funds so that we -- (Pause) -- are stopped. No matter how high the hierarchy, 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.

REP. BILIRAKIS: Thank you so much, Mr. Colon.

Mr. Jackson?

MR. EUGENE JACKSON: Mr. Chairman and members of the subcommittee on health and environment, good afternoon. My name is Eugene Jackson and 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'm 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 fund 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 of 1998 I spent 46 days in the hospital, starting off with a sinus infection resulting in end- stage renal disease, secondary to HIV infection. My hospital bill was more than $85,000 alone, not including physician fees and other service. Even though prior to my admission I was a practicing attorney. However, 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 the Title 2 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 of 1998. Nevertheless, Medicare does not provide prescription drug coverage.

Thanks to ADAP under Title 2 of the CARE Act, I was provided my most expensive medication. To cover the assistance that 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 2 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 can change your work to reauthorize the Ryan White CARE Act, NAPWA comments you and strives to adapt the act to demographic shifts in the epidemic, particularly 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 human suffering caused by HIV and AIDS.

From this perspective I followed 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 underserved areas have no fewer service needs. In fact persons in Mississippi depend on the service 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 service.

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 and any shift 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 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, infant, children and youth set-asides, but we are concerned about the provisions which create a new grant for states that clearly have laws that require all newborn infants in the state be tested for HIV or that require a newborn be tested for HIV if the attending obstetrician for the birth does not know the HIV status of the infant's mother.

REP. 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, to provide safe and confidential testing, and then provide them with comprehensive and accessible prenatal care to address the issues of prenatal transmission. If they choose, states can implement mandatory testing laws, but Congress should not provide those states preferential treatment.

Nevertheless, we believe that the people living with HIV who depend on services provided by the CARE Act will best be served with the following modifications.

Include language under Title 2 to make planning councils mandatory. It is important to the continued success of the CARE Act

REP. BILIRAKIS: Please summarize. I want you to get your point across, and possibly you may not be able to. You're explaining in too much detail.

MR. JACKSON: I thank the committee for the opportunity to provide a perspective on people living with HIV who depend on lifesaving medical and supportive services made possible by the CARE Act. NAPWA and the HIV community look forward to working with you to reauthorize the Act and I welcome any questions you may have.

REP. BILIRAKIS: Thank you very much, Mr. Jackson. Thanks to all of you.

Ms. White, you of course have expressed your strong support for the Ryan White Act, your pride in the fact that it's named after Ryan. And you say in your testimony, and I quote, "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.

"

I would ask you, you've been at this unfortunately for quite a long period of time -- fortunate for a lot of people, unfortunate for you, for a long time. 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 tested. By knowing your status, I think that's the most likely way of preventing the disease. I really think that's number one.

REP. BILIRAKIS: Do you think, and I plead ignorance here. Do you feel that after all of these years where we've been living with the scourge of AIDS and what not that there are people out there, at risk people, who are not aware of the --

MS. WHITE: Oh, yeah. Especially our youth. They think they're invincible. I have seen the new statistics that youth are waiting -- some youth, I think we must understand some youth. I think there will always be sexually active youth, and I think family plays a big role in that too. I'd like to think that everybody had as good a parents as maybe I did, you know. But that's not the case, and moral values.

But also at the same time, I think youth are youth, and they're the most likely to experiment with sex, drugs, and sexuality. And I think we as parents have to be on the look out for that, but I think we as a nation have to look out for everybody's needs and I think that is looking out for our youth. And if you are going to be sexually active, then encourage them to get tested.

REP. BILIRAKIS: Mr. Liberti, sort of a follow-up to Ms. White's comments.

Since Florida has enacted HIV partner notification and 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 for at least publicly funded patients in 1987, and had ten 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.

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 wasn't for reaching out and letting them know. And they're quite appreciative of this --

REP. BILIRAKIS: So you haven't 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's worked out with the individual client. No one is mandated or forced to give up names. That just doesn't work.

REP. BILIRAKIS: Thank you.

In terms of the improvements made to Florida's programs, and now that you've expanded reporting to include those diagnosed with HIV rather than just AIDS, your testimony on page seven, your written testimony, indicates, and again I quote that "HIV infection reporting has clearly shown a significant increase in HIV infection in Florida's minority communities."

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 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 and they saw the numbers of how severe HIV was penetrating the black community. I've told this story before. The conversation with our black leaders lasted about ten minutes. They said, what can we do? They went directly to 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 it was a problem before that. It doesn't really matter. The point was, that was the defining moment when our African American leaders took action, and we're pretty proud of them.

REP. BILIRAKIS: Thanks so much, Mr. Liberti. And again, than you for all your great work in this regard.

Mr. Brown?

REP. BROWN: I apologize for not hearing the panel. I had a couple of amendments on the House floor.

Thank you all for coming and Mr. Davy, I'd like to ask you a question. Having looked at your testimony, you said in your written testimony 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, Representative Brown, what I mean by that is the epidemic has not gone from the gay community to the African American community or the community of women. It's still very prevalent in the gay community, it's expanding into the African American community, it's expanding into communities of women, the male to male transmission in Ohio is still 55 percent of the epidemic of new HIV infections. I Columbus it's 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's changed to another community, but that's not the case. It's just expanded to new communities.

REP. BROWN: Okay.

That's all, Mr. Chairman.

REP. BILIRAKIS: Dr. Coburn?

REP. COBURN: I want to clarify something 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 the HIV field from being on the planning council, but the intention is to make sure that patients who are not inside the beltway, inside the group, the people who are actually being treated have a voice on that panel. There's nothing in this bill that will limit anybody else from being on the planning council, but we do say one-third of those seats ought to be patients receiving treatment so that we have the feedback that's necessary so that we won't have the problems that we had in Puerto Rico.

So there's no intention to exclude anybody who's now working in the AIDS service industry who was a beneficiary of the Ryan White CARE funds from being on the council. What we're just saying is one-third of those have to be reserved for patients being treated so that the feedback communication is there. I hope you understand that that's our intent.

MR. DAVY: Chairman Bilirakis, Representative Coburn, I appreciate that. My concern really revolves around making sure the people that are on the planning councils are the ones that have the best information they can. Oftentimes what we're finding today is many of our patients are coming to work at our AIDS service organizations and there appears 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 want to be sure that that's not the case.

REP. COBURN: That's 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: I think we have believed in some core public health values for quite some time. It took us five 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. And when we advocated for HIV partner notification we felt it was going to accomplish a couple of things that we were not accomplishing. 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, and that this would allow the name 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.

And let me clarify, because I think there's confusion around the country on this issue. That when I say linked, I mean linked in a very patient specific timely fashion. Not a general referral made to go see a doctor. A complete --

REP. COBURN: I think that's 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. Other than an attempted case by a worker to expose HIV names in Florida, there's 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 we have in place now is that we, the AIDS program in our state works very closely with the sexually transmitted disease program, and those are the staff that are adequately trained to do partner notification.

If the contact or suspect, using STD terms, is within our state, even across county lines, we have an interstate system of transmitting that information.

REP. COBURN: I'm asking you specifically about out of state.

MR. LIBERTI: Out of state is usually done by a reciprocal information. If the state we're going to has HIV reporting and a partner notification program, then the information is transmitted and they carry out the same --

REP. COBURN: What if they don't have HIV reporting and partner

MR. LIBERTI: I believe the case is closed and there's nothing we can do.

REP. COBURN: So in essence, somebody has HIV and they're in a different state and that state doesn't have reporting or partner notification, so it's just tough. They've been exposed and they have no knowledge that they have an exposure, and we don't have a way to allow them to know that they have an exposure. Is that correct?

MR. LIBERTI: That is correct, under the understanding I have right now.

REP. COBURN: Dr. Birkhead, thank you for being here. We appreciate all the great work that you all are doing.

Five years ago we passed a 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? Do you deem that a success? Where are the problems?

DR. 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 labs for metabolic screening back in 1997, and those results were then returned to the mothers and the pediatricians 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. The mom could stop breast-feeding.

Secondly, the newborn could then be tested by PCR to determine infectious status, and that's very critical, to become heart therapy as soon as possible in a newborn who's infected perinatally.

And thirdly, that the mom then became aware of her status and could seek care for herself.

I think we recognized 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 and 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, I think we could do better if we had more, better, rapid tests, and that's an issue we can talk about. But I think we are currently identifying all the positive births in New York and the benefits are those that I've indicated.

There was concern expressed that women might not seek prenatal care or avoid prenatal care. We haven't 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 haven't seen any change.

A lot of our efforts are now focused on women who have no prenatal care. Ideally you'd like to get them tested in prenatal care, not even wait until the delivery setting.

REP. COBURN: And we'd like to get them into prenatal care.

DR. BIRKHEAD: Absolutely. We still have about 10 percent of our women with HIV don't get any prenatal care. That in-hospital testing then serves as a safety net to catch them, but we'd ultimately like to get them into prenatal care and --

REP. BILIRAKIS: We'll come back to you if you'd like.

Ms. Eshoo to inquire.

REP. 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's made a difference in our nation. You've certainly paid as an individual. I don't think any parent should ever have to see the day where they bury their own child. But what you've done and the dignity with which you've done it, you've benefited everyone in this nation, so thank you. I pay tribute to you.

Dr. Birkhead, thank you for your good work. I wanted to point out if committee members may not have heard it or read it that on page nine of your written testimony, that you give written testimony here that the Act should establish hold harmless provisions for Title 1 and 2 that will avert drastic reductions in awards and disruptions of 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, and you say we support the hold harmless provisions in the Senate bill which call for reductions of no more than two 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's Mississippi or to a major urban center or any other place in our country. Do you quickly want to comment on that?

DR. BIRKHEAD: I think our concern is whenever funding is pulled it's very disruptive.

We've had good experience over the last five years with continuing increases, and if that were to continue the next five years, as we all hope, I think that would be great, and perhaps the point is then moot. But I think we're very concerned in the out years of this new reauthorized Act that if funding was not increased in places like New York, particularly New York City --

REP. ESHOO: I think there is -- Thank you -- either an overtone or an undertone here that maintaining that this is strictly a San Francisco issue. But you are from New York state so I think 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 a W. Shepherd Smith of April 5, 1995. I have a copy of that testimony that was given before this subcommittee. Nowhere in the testimony is there an agreement by anyone that there will be a 25 percent reduction.

And I also want to add to the record that 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'd like to go to Janet Heinrich from the GAO. Has GAO done an analysis of the hold harmless provision and what the 25 percent cutback 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 1 funding and looked to see how it was playing out in 1999.

REP. 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'm going to ask Jerry Foster to answer that.

MR. JERRY FOSTER: The density factor was included in the Title 1 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. That density factor on the city in Connecticut, a small city and a large city would wind up getting the same funding, even though one may have twice the caseload of the other, and there were some serious problems there.

When we did our report --

REP. ESHOO: Let me just interrupt for a moment, because I don't want to have all the time taken with this, as much as I'd 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. Let me present it this way, and then maybe you can respond to it. In large part because there are fewer HIV positive individuals that are progressing to an AIDS diagnosis, and I think that's thanks to the quality of access of care, the kind of care that is rendered through the CARE services.

Is that area being penalized for keeping people healthy? And also, if there are smaller increases in newly reported AIDS cases, as is the case in San Francisco, why continue to rely on the hold harmless provision?

MR. FOSTER: I'm not sure I understand why you would want --

REP. ESHOO: Take the first question first.

MR. FOSTER: Give it to me one more time, please.

REP. 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's not only good access to care, but there's also quality of care in the services.

I think that it could be said in terms of what's being proposed relative to the hold harmless, huge cuts, 25 percent overall, that the area is being penalized for keeping people healthy. Did you examine any of this in your ultimate analysis?

MR. FOSTER: To the extent that AIDS cases --

REP. ESHOO: Or did you just play with numbers?

They're human beings. Everyone at this table, even the gentleman from Puerto Rico is crying out and saying there's 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. FOSTER: The answer is that AIDS cases are being kept alive, they're continuing to be counted as live cases, they're continuing to be reflected in the formula, and areas are getting funding based on the number of live cases they have.

So areas that are successful in keeping people alive will continue to receive funding under these formulas.

REP. ESHOO: But not if they live longer than ten years. Did you take that into your analysis? There is a cutoff point here. This is just very tidy in terms of some GAO numbers.

MR. FOSTER: No, in --

REP. BILIRAKIS: Without objection, the gentle lady has gone better than two minutes over time, but I would grant her an additional two minutes.

REP. ESHOO: Thank you.

MR. FOSTER: When the program was reauthorized in 1995, all there were were ten 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 in --

REP. ESHOO: Well, they are living longer. They are living longer, and they are part of the care and the services. So I think 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.

REP. BILIRAKIS: The gentleman from Ohio -- the other gentleman from Ohio.

REP. TED STRICKLAND (D-OH): Thank you, Mr. Chairman.

Mr. Davy, you described the challenges of providing care in rural Ohio, and that's what I represent. And you support the new Title 2 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 underserved 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 3 which I believe offsets the effect somewhat of the supplemental Title 2 grant being specifically addressed to those, I believe there were 35, 36, 37 cities that were specifically named in that bill. So they're kind of different in the way they get at the issue.

Rural communities are obviously a large problem in access to care. Anything we can do in the CARE Act to strengthen access to care in rural communities is certainly a good thing.

REP. STRICKLAND: 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 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? And I'm talking about prisoners and homeless folks. And I'd 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, 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 can transmit

REP. STRICKLAND: Can I interrupt you just for a moment? Having worked in a prison for over eight years, I can tell you HIV exists within our prison system and sex occurs within our prisons.

MR. DAVY: And I agree, and we know that.

We have worked in Columbus AIDS Task Force, worked very extensively with other substance abuse providers, mental health providers, to try to do good collaboration to maximize the use of the Ryan White fund. 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, a drug abuse issue, a homeless issue and AIDS, AIDS was probably fourth or fifth on the list of things 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's still not fixed. So oftentimes we're 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.

REP. 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 we're dealing with right now. And to add on to Mr. Davy that expanding the face of AIDS, we have 3,200 HIV patients in the Florida prison system, and I can guarantee you we did not have that number ten years ago. And all the challenges of delivering HIV care and all the release policies and all the, where's the money for the drugs is a major issue. That's a very large population to deal with that Department of Health and Department of Corrections are working on.

The jails also have an increase of the known HIV positives. One of the challenges that we deal with as directors every day, as you know, is that we can't use ADAP money. We can't use Ryan White Title 2 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 medication. So you've really hit on a very big issue that we're dealing with at the local level.

REP. STRICKLAND: Thank you, Mr. Chairman.

REP. BILIRAKIS: Thank the gentleman.

Without objection, the Chair yields three -- well, we have Mr. Towns. Do you have questions?

REP. TOWNS: I was trying to let you move on but I really have to Dr. Birkhead, you've heard discussions this morning around this bill. Do you really feel that this goes far enough? The bill itself to try to do the kind of things we're trying to do in New York.

DR. BIRKHEAD: I think most of the provisions are good for New York. There's always the question of funding levels, and you made the comment earlier about that. I think we, as ADAP expands, as people live longer with HIV we will need more funding for the drug portion of ADAP, but it's really the appropriation level that you're talking about there. I think in the current House bill, most of the provisions we think are good ones and will help New York.

REP. TOWNS: Any other comments from anyone in terms of the structure of the bill we've been talking about this morning?

(No audible response)

REP. TOWNS: Thank you very much, Mr. Chairman.

REP. BILIRAKIS: I didn't mean to cut you off.

REP. TOWNS: No, it's fine. When you're out on the floor dealing with legislation you do miss out on a lot and I don't 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 as Dr. Birkhead that particular question.

Thank you.

REP. COBURN: Mr. Chairman, I ask unanimous consent to enter into the record testimony submitted by Mr. Waxman who is on the floor.

REP. BILIRAKIS: Yes. Without objection, that will be the case. It's just unfortunate that Henry could not get back because the work that he and Dr. Coburn did on this, along with their staffs, Karen and so many others, is just extraordinary and I know we're all very grateful.

Without objection, the Chair yields an additional three minutes, hopefully that will finish us up, to Dr. Coburn.

REP. COBURN: Thank you.

I would direct everybody to page 51 of the GAO report, and I think for my friend from California, this will answer some questions for her.

Actually, with 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's going to gain because we're going to do it on the basis of HIV infection. And if you look at the bottom of page 51, what you see is that in Washington, D.C. 60 percent of the people, 58.7 percent, are HIV positive but not AIDS, but they're not being counted to adequately talk about the funding level for them. Whereas in San Francisco, 48 percent of the cases were AIDS versus 52 percent.

So what we're trying to do is include them both, and to totally reflect it. And if in fact this trend, this alarming trend that we're seeing in San Francisco in terms of new HIV trends, they will be protected because more of the money's going that way. So I think it's real important.

I want to ask one other question of the GAO, and please cut the legs out from under me if I'm 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. LIBERTI: That's true.

REP. COBURN: So if an epidemic is new in a community, let's take any community, and let's say they have exactly the same number of people today alive with either HIV and AIDS, the proportion of funding would be drastically different under Title 1. And that's the only point.

Look, I don't 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. So, and Mr. Towns is exactly right. We are going to float this boat up and we have 29 percent each year. Nothing has increased in this government in the last six years like the Ryan White has. Nothing. So what we're going to see -- and that's going to continue to do. But as we do that, we ought to make sure it's a fair distribution, and that's what we're trying to address. We're not trying to undermine California or San Francisco, and that's not my intention. But it is a fair distribution of funds.

Ms. Mann, could I ask, first of all, I want to thank you for all your work. You're a very dear friend of mine, and I've made trips into her facilities and learned a lot, and she's taught me a lot. I appreciate your comments on prevention. You were not here, unfortunately, when HRSA testified --

MS. MANN: Oh, I was here.

REP. COBURN: I didn't see you. I'm sorry. You're so petite. (Laughter) But I'm concerned that this gray area that Dr. O'Neill talked about, which you really don't find very gray. And in fact most of our HIV infections are coming from people -- half of our HIV infections are coming from people who know they have HIV. So would you comment a little bit more on incorporating -- Since you're right in the middle of this, 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.

There are a couple of things I hope we can clarify about this. I also sit on the CDC's SCDHIV advisory committee so I'm 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're so intimately involved in.

I really don't see a problem or conflict here for two reasons. One, Title 4, 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 in our, our focus is on women, who are HIV infected, and getting them into our care system. It's funded by Title 4.

It's very specific and very clear and very directed, and is not in any sense a conflict. But prevention is more than counseling and testing, and 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's a very simple paradigm. You don't 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 a non-infected person. That's the only way you get it.

Most of CDC's efforts have been focused on the uninfected population, and that's very commendable.

What we have not done well enough in CARE is focused 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 this is not a particularly gray area. CARE has an enormous responsibility. As I said in my testimony, 40,0000 new cases of HIV is not acceptable in this country. It's down from 100,000 and 150,000, and that's good. But we have a long way to go.

So from my perspective, any place, any where, any how we can talk about prevention -- in the community, in the clinic, we ought to be doing it.

REP. BILIRAKIS: Will the gentleman yield?

You also said in your testimony at that particular point, referring to the 40,000 new patients, that it has almost become acceptable here in the United States. Very briefly, what do you mean by that?

MS. MANN: It's not considered a crisis here any longer. You're 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's the last time you saw anybody talk about 40,000 new cases of HIV in terms of the public's consciousness?

I take a cab from my house to the train station to get here, and I asked the cab driver, do you have any idea how many people get HIV in this country every year? He said I don't know, a couple of thousand, a few hundred, whatever. I said how would 40,000 strike you? He said no, that can't be right.

What I'm saying is, 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.

REP. COBURN: Mr. Chairman, I just have one other question for Mr. Liberti.

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 don't 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 don't think the drug problem has been stated loudly enough.

REP. COBURN: But I'm particularly interested, since you have a partner notification, you're identifying where the contacts are coming from. You don't have any data looking back at the failure of education for those that are infected that go out and continue to infect? You don't see a recidivism rate in any areas at all that you can trace from your data back --

MR. LIBERTI: We do, but I can't really produce those numbers for you today. I can respond.

REP. COBURN: I'd love to have that from you.

Thank you, Mr. Chairman.

REP. BILIRAKIS: And really, we're asking all of you to be available in terms of additional questions in writing that will be furnished to you. Ms. Eshoo has mentioned she will have some, and others. 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's been a very lengthy hearing but I think a very constructive one. We've learned a lot from you.

Thank you.

END

LOAD-DATE: July 14, 2000

Document 8 of 36.


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