REAUTHORIZING THE RYAN WHITE 

CARE ACT: HOW TO IMPROVE 

THE PROGRAM TO ENSURE 

ACCESS TO CARE 

HEARING 

BEFORE THE 

SUBCOMMITTEE ON HEALTH 

OF THE 

COMMITTEE ON ENERGY AND 

COMMERCE 

HOUSE OF REPRESENTATIVES 

ONE HUNDRED NINTH CONGRESS 

SECOND SESSION 

APRIL 27, 2006 

Serial No. 109-88 

Printed for the use of the Committee on Energy and Commerce 

Available via the World Wide Web: http://www.access.gpo.gov/congress/house 

U.S. GOVERNMENT PRINTING OFFICE 

WASHINGTON : 2006 

For sale by the Superintendent of Documents, U.S. Government Printing Office 

Internet: bookstore.gpo.gov Phone: toll free (866) 512-1800; DC area (202) 512-1800 

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28-656PDF 
COMMITTEE ON ENERGY AND COMMERCE 

JOE BARTON, Texas, Chairman 

RALPH M. HALL, Texas 

MICHAEL BILIRAKIS, Florida 

 Vice Chairman 

FRED UPTON, Michigan 

CLIFF STEARNS, Florida 

PAUL E. GILLMOR, Ohio 

NATHAN DEAL, Georgia 

ED WHITFIELD, Kentucky 

CHARLIE NORWOOD, Georgia 

BARBARA CUBIN, Wyoming 

JOHN SHIMKUS, Illinois 

HEATHER WILSON, New Mexico 

JOHN B. SHADEGG, Arizona 

CHARLES W. “CHIP” PICKERING, Mississippi 

 Vice Chairman

VITO FOSSELLA, New York 

ROY BLUNT, Missouri

STEVE BUYER, Indiana 

GEORGE RADANOVICH, California 

CHARLES F. BASS, New Hampshire 

JOSEPH R. PITTS, Pennsylvania 

MARY BONO, California 

GREG WALDEN, Oregon 

LEE TERRY, Nebraska 

MIKE FERGUSON, New Jersey 

MIKE ROGERS, Michigan 

C.L. “BUTCH” OTTER, Idaho 

SUE MYRICK, North Carolina 

JOHN SULLIVAN, Oklahoma 

TIM MURPHY, Pennsylvania 

MICHAEL C. BURGESS, Texas 

MARSHA BLACKBURN, Tennessee 

JOHN D. DINGELL, Michigan 

 Ranking Member 

HENRY A. WAXMAN, California 

EDWARD J. MARKEY, Massachusetts 

RICK BOUCHER, Virginia 

EDOLPHUS TOWNS, New York 

FRANK PALLONE, JR., New Jersey 

SHERROD BROWN, Ohio 

BART GORDON, Tennessee 

BOBBY L. RUSH, Illinois 

ANNA G. ESHOO, California 

BART STUPAK, Michigan 

ELIOT L. ENGEL, New York 

ALBERT R. WYNN, Maryland 

GENE GREEN, Texas 

TED STRICKLAND, Ohio 

DIANA DEGETTE, Colorado 

LOIS CAPPS, California 

MIKE DOYLE, Pennsylvania 

TOM ALLEN, Maine 

JIM DAVIS, Florida 

JAN SCHAKOWSKY, Illinois 

HILDA L. SOLIS, California 

CHARLES A. GONZALEZ, Texas 

JAY INSLEE, Washington 

TAMMY BALDWIN, Wisconsin 

MIKE ROSS, Arkansas 

BUD ALBRIGHT, Staff Director 

DAVID CAVICKE, General Counsel

REID P. F. STUNTZ, Minority Staff Director and Chief Counsel

SUBCOMMITTEE ON HEALTH 

NATHAN DEAL, Georgia, Chairman 

RALPH M. HALL, Texas 

MICHAEL BILIRAKIS, Florida 

FRED UPTON, Michigan 

PAUL E. GILLMOR, Ohio 

CHARLIE NORWOOD, Georgia 

BARBARA CUBIN, Wyoming 

JOHN SHIMKUS, Illinois 

JOHN B. SHADEGG, Arizona 

CHARLES W. “CHIP” PICKERING, Mississippi 

STEVE BUYER, Indiana 

JOSEPH R. PITTS, Pennsylvania 

MARY BONO, California 

MIKE FERGUSON, New Jersey 

MIKE ROGERS, Michigan 

SUE MYRICK, North Carolina 

MICHAEL C. BURGESS, Texas 

JOE BARTON, Texas 

 (EX OFFICIO)

SHERROD BROWN, Ohio 

 Ranking Member 

HENRY A. WAXMAN, California 

EDOLPHUS TOWNS, New York 

FRANK PALLONE, JR., New Jersey 

BART GORDON, Tennessee 

BOBBY L. RUSH, Illinois 

ANNA G. ESHOO, California 

GENE GREEN, Texas 

TED STRICKLAND, Ohio 

DIANA DEGETTE, Colorado 

LOIS CAPPS, California 

TOM ALLEN, Maine 

JIM DAVIS, Florida 

TAMMY BALDWIN, Wisconsin 

JOHN D. DINGELL, Michigan 

 (EX OFFICIO)

(II)
CONTENTS 

Page 

Testimony of: 

Duke, Dr. Elizabeth M., Administrator, Health Resources and Services 

Administration, U.S. Department of Health and Human Services............................... 17 

Fenton, Dr. Kevin, Director, National Center for HIV, STD, and TB Prevention, 

Centers for Disease Control and Prevention, U.S. Department of Health and 

Human Services.............................................................................................................. 22 

Crosse, Marcia, Director, Health Care, U.S. General Accountability Office .................... 29 

Additional material submitted for the record: 

Duke, Dr. Elizabeth M., Administrator, Health Resources and Services 

Administration, U.S. Department of Health and Human Services, response for the 

record.............................................................................................................................. 90 

Fenton, Dr. Kevin, Director, National Center for HIV, STD, and TB Prevention, 

Centers for Disease Control and Prevention, U.S. Department of Health and 

Human Services, response for the record ...................................................................... 94 

(III) 

(1) 

REAUTHORIZING THE RYAN WHITE 

CARE ACT: HOW TO IMPROVE 

THE PROGRAM TO ENSURE 

ACCESS TO CARE 

THURSDAY, APRIL 27, 2006 

HOUSE OF REPRESENTATIVES, 

COMMITTEE ON ENERGY AND COMMERCE, 

SUBCOMMITTEE ON HEALTH, 

Washington, DC. 

The subcommittee met, pursuant to notice, at 9:05 a.m., in Room 

2123 of the Rayburn House Office Building, Hon. Nathan Deal 

(chairman) presiding. 

 Members present: Representatives Upton, Norwood, Shimkus, Pitts, 

Bono, Ferguson, Burgess, Barton (ex-officio), Brown, Waxman, Towns, 

Pallone, Rush, Eshoo, Strickland, Capps, Baldwin and Deal. 

 Staff present: David Rosenfeld, Acting Chief Health Counsel; 

Katherine Martin, Professional Staff Member; Melissa Bartlett, Counsel; 

Brandon Clark, Policy Coordinator; Chad Grant, Legislative Clerk; John 

Ford, Minority Counsel; and Jessica McNiece, Minority Research 

Assistant. 

MR. DEAL. I will call the subcommittee to order and recognize 

myself for an opening statement. 

 I am proud to say that once again, in the tradition of this 

subcommittee, we have an outstanding and distinguished expert panel of 

witnesses to testify today and to help us explore and examine the current 

implementation of the Ryan White program, and how to best improve the 

program as the committee considers the issue of reauthorization. While 

this panel consists of expert witnesses from within the Federal 

government, I would say to other stakeholders that we intend to have a 

roundtable discussion at a later time where members of the committee 

and other stakeholders will be invited to attend, because I believe that it 

is important for us to hear from as many interested parties as possible. 

 The Ryan White CARE Act was first authorized in 1990 and was 

reauthorized in 1996 and in 2000. Although the legislative authority 

expired on September the 30th of last year, the program continues to 

operate at its current funding level. The outcomes and treatments for 

HIV and AIDS have changed over the years, and so have the needs of 
2

those who suffer from the disease. For example, persons with HIV, of 

course, now live longer due to advances in drug therapies. 

 The President’s fiscal year 2007 budget requests $2.2 billion for 

Ryan White activities, which is $95 million above last year’s budget 

request. There are a number of additional Federal programs that also 

assist with the care and support for persons with HIV/AIDS. However, 

the Ryan White program is the only major Federal disease-specific 

comprehensive treatment program. Additionally, Ryan White providers 

currently use Federal funds without any limitation to provide nontreatment services for persons with HIV and AIDS. These include 

services not covered for Medicare or Medicaid beneficiaries, including 

buddy and companion services, health education, treatment adherence 

and counseling, and housing assistance. 

 During both the 2005 and 2006 State of the Union addresses, 

President Bush called for the reauthorization of the Ryan White CARE 

Act. Last summer, the President set forth a series of reauthorization 

principles for this program. These principles retain the basic funding 

structure, but called for altering the titles to reflect the overarching 

principle that Ryan White funds be used for prevention and to provide 

care and treatment to persons with HIV/AIDS. Specifically, the 

President’s principles include: one, serve the neediest first; two, focus on 

lifesaving and life-extending services; three, increase prevention efforts; 

four, increase accountability; and five, increase flexibility. It is my 

sincere hope that we can improve the Ryan White program with this 

reauthorization opportunity, and ultimately improve outcomes for those 

who are suffering from this disease. 

 Again, I welcome our witnesses that I will introduce in a few 

minutes, and thank them for their participation. 

 [The prepared statement of Hon. Nathan Deal follows:] 

PREPARED STATEMENT OF THE HON. NATHAN DEAL, CHAIRMAN, SUBCOMMITTEE ON 

HEALTH

The Committee will come to order, and the Chair recognizes himself for an opening 

statement. 

I am proud to say that we have a distinguished and expert panel of witnesses 

appearing before us today that will help us examine the current implementation of the 

Ryan White program and how to best improve the program as the Committee considers 

reauthorization. While this panel consists of expert witnesses from within the Federal 

Government, this Subcommittee intends to have a roundtable discussion at a later date 

where Members and stakeholders will be invited to attend because we believe it is 

important to hear from as many interested parties as possible. 

The Ryan White CARE Act was first authorized in 1990 and was reauthorized in 

1996 and 2000. Although the legislative authority expired on September 30, 2005, the 

program continues to operate at its current funding level. The outcomes and treatments 

for HIV and AIDS have changed over the years and so have the needs of those with the 
3

disease. For example, persons with HIV now live longer due to advances in drug 

therapies. 

The President’s Fiscal Year 2007 Budget requests $2.2 billion for Ryan White 

activities, which is $95 million above last year’s budget request. There are a number of 

additional Federal programs that also assist with the care and support for persons with 

HIV/AIDS. However, the Ryan White program is the only major federal disease-specific 

comprehensive treatment program. Additionally, Ryan White providers currently use 

Federal funds without any limitation to provide non-treatment services for persons with 

HIV and AIDS. These include services not covered for Medicare or Medicaid 

beneficiaries, including: 

o Buddy and companion services 

o Health education 

o Treatment adherence and counseling 

o Housing assistance 

During both the 2005 and 2006 State of the Union Addresses, President Bush called 

for the reauthorization of the Ryan White CARE Act, and last summer, the President set 

forth a series of reauthorization principles for this program. These principles retain the 

basic funding structure, but call for altering the titles to reflect the overarching principle 

that Ryan White funds be used for prevention and to provide care and treatment to 

persons with HIV/AIDS. Specifically, the President’s principles include: 

1. Serve the neediest first 

2. Focus on life-saving and life-extending services 

3. Increase prevention efforts 

4. Increase accountability 

5. Increase flexibility 

It is my sincere hope that we can improve the Ryan White program with this 

reauthorization opportunity and ultimately improve outcomes for those who are suffering 

from this disease. 

Again, I welcome our witnesses and thank them for their participation. 

I now recognize the Ranking Member of the Subcommittee, Mr. Brown from Ohio, 

for five minutes for his opening statement. 

 MR. DEAL. It is now my pleasure to recognize my friend, the 

Ranking Member of the subcommittee, Mr. Brown from Ohio for his 

opening statement. 

 MR. BROWN. Thank you, Mr. Chairman, and thank you for holding 

this hearing. I would just like to offer special thanks to my friend Mr. 

Waxman for all he has done over the years on all kinds of issues, but 

especially what he has done on Ryan White. 

 I was a bit frustrated to hear that our guest list today does not include 

any individuals who actually rely on the CARE Act or any patient 

advocates. I am pleased that the Chairman has agreed to a follow-up 

roundtable where we can hear from these individuals, but their absence at 

this hearing, I believe, compromises its value. I urge the Chairman to 

convene the roundtable right away. These advocates deserve the same 

forum as the Administration and the same opportunity to have their 
4

voices heard as we move forward with efforts to reauthorize the CARE 

Act. 

 We made great progress in the last decade to educate the public 

about HIV and AIDS, to increase testing levels, to chip away at the 

stigma associated with infection, and to develop better treatment and 

standards of care, but clearly, much more needs to be done. Tens of 

thousands of Americans are newly infected with HIV every year. An 

estimated half of those infected are not receiving the treatment they need. 

We know there are at least 14,000 people in my State alone with 

HIV/AIDS. The State estimates that there are thousands more who are 

infected but who are unaware of their status. 

 In just a single year, Ohio medical providers diagnosed almost 1,000 

new cases. Many of them would have no source of care were it not for 

the Ryan White CARE Act. More than 15 years after its enactment, 

Ryan White continues to be a vital tool in our Nation’s arsenal to stop the 

spread of HIV. The Act honors Ryan White, as we know, a courageous 

young man who did so much to spark the fight against HIV/AIDS before 

it took his life. 

 The CARE Act provides funding and access to quality medical 

treatment and services without which thousands of Americans would be 

unable to manage this disease. The Act serves the neediest among us, 

over 570,000 Americans who have nowhere else to turn for the 

treatments that can change AIDS from a death sentence to a manageable 

condition. 

 I represent a Congressional district that is part of the only Title I 

eligible metropolitan area in Ohio. I have seen firsthand how 

indispensable the CARE Act is. We have an opportunity to reauthorize 

the program and renew our commitment to its future. We also have an 

opportunity to improve it, to figure out what is working and what is not 

working. We should consider whether there are inequities in the system, 

but we should not take needed care away from one population in order to 

give it to another. It is in our Nation’s best interest and it is within our 

Nation’s capabilities to help all those in need, whether they live in an 

urban area or rural area, or somewhere in between. Beneficiaries should 

continue to have access to the mutually reinforcing comprehensive set of 

services, both medical and support services, that they need to treat their 

conditions and to live long and productive lives. States should have 

flexibility in determining what services are needed most in their 

communities. 

 Let us make sure, Mr. Chairman, that the Act gets adequately funded 

and that we fix administrative loopholes that have allowed unused funds 

to revert back to the Treasury at the same time that States have been 

forced to create waiting lists for care. I am encouraged by the 
5

communication between Members on both sides of the aisle to 

reauthorize the CARE Act. I hope this communication continues to 

move us towards developing a bipartisan proposal we can all support. 

Our Nation has lost too many talented young men and women to this 

epidemic we have been battling, HIV/AIDS, for more than a quarter 

century. We have made progress, but this fight is far from over. Let us 

make the CARE Act stronger and better so that we can continue to 

provide opportunity and hope for thousands of Americans living with 

HIV/AIDS. 

 Mr. Chairman, thank you. 

 MR. DEAL. I thank the gentleman. I am pleased to recognize my 

colleague from Georgia, Dr. Norwood, for an opening statement. 

 MR. NORWOOD. Thank you very much, Mr. Chairman. 

 The Ryan White CARE Act probably isn’t on the minds of most 

Americans this morning. However, this reauthorization, in my opinion, 

could be one of the most important pieces of legislation this committee is 

going to look at this year. 

 Not many people know what the CARE Act is, and I can probably 

count most of my colleagues amongst that group. But for the HIV/AIDS 

patients, it helps, and the cost it takes off of our State’s Medicaid 

programs is essential. 

 Ryan White was a 13-year-old hemophiliac who was infected with 

HIV through a blood transfusion. While Ryan lost his battle many years 

ago, we must not forget how far we have come over the years. 

 Mr. Chairman, the face of AIDS has changed and the CARE Act 

must change with it. This change will not be easy, but we have to face 

the uncomfortable fact that we simply don’t have unlimited funds. That 

means as drug therapies become even more important, we will be locked 

in a battle over limited resources. The CARE Act does not currently 

cover important medical care and where it does provide care, for 

example, like dental, it falls far short of where it needs to be. Personally, 

I do not believe in these titles, that they are holy and can’t be changed, 

but I understand many folks want to protect those States that have 

succeeded. What about the States that have not succeeded under this 

Act? HIV infections are increasing in the South. One of the major 

infection strains is right up the I-95 corridor, right through the heart of 

my State. Congress has the opportunity to provide a better healthcare 

delivery system moving from a palliative care model to a blended 

chronic care model that recognizes HIV as an increasingly manageable 

disease. 

 We also should put the focus on HIV and AIDS cases equally. 

States and communities receive funding based on AIDS patients. That is 

wrong and creates the worst of incentives. The money needs to follow 
6

the infections. The days of defending Title I cities, protecting them in 

statute must end, and the money needs to go to the patients. This issue is 

essential in my home State of Georgia, among minorities, and in those in 

rural areas. No one should receive the short end of the stick because of 

where they live. If we really care about this population, we are going to 

have to focus on patients and make sure the CARE Act we create today 

will meet the challenges of tomorrow. 

 Thank you very much, Mr. Chairman, for having this hearing. 

 MR. DEAL. I thank the gentleman. I am now pleased to recognize 

the gentlelady from California, Ms. Capps, for an opening statement. 

 MS. CAPPS. I hesitate because Ms. Bono was here before me. 

 MR. DEAL. I will be pleased to recognize Ms. Bono because she was 

here first, but I was told to recognize you first since you had a time 

constraint. 

 MS. CAPPS. Thank you very much. Mr. Chairman, I am pleased that 

this subcommittee is meeting on this subject. I thank our panelists for 

being here today. There are a number of very important and very timely 

issues about which we need to make decisions very quickly, and we need 

your guidance and your expertise. 

 The reauthorization of the Ryan White CARE Act is a very critical 

condition and a very critical issue for this committee, the HIV/AIDS 

community, and indeed, our entire country. Today, I hope we can focus 

on how we can strengthen the CARE Act so it continues to meet the 

health needs of persons living with HIV disease and their families. 

 This issue is especially important in the State that Mr. Waxman, Ms. 

Eshoo, and I represent, California, which has the second largest disease 

burden in the United States with 14 percent of AIDS cases. I am 

particularly concerned that the current CARE Act law states that by 

October 1 of this year, all States, territories, and jurisdictions must 

submit names-based HIV data to the CDC. The CDC has stated that in 

order to accept HIV data by October 1, they need to certify that a State 

had a mature system by January 2006. However, the California 

Governor signed the HIV names-based data collection system into law 

just last week, and California’s system will not be certified in time. The 

October 1 deadline does not allow our State adequate transition time. 

According to the February 2006 GAO report, this would penalize almost 

20 jurisdictions who do not fall under CDC’s definition of an accurate 

and reliable names-based reporting system. 

 I am interested to hear from the panelists today about how we can 

work together to ensure that the approximately 42,000 members of 

California’s HIV community continue to receive healthcare and support 

services. I look forward to hearing your testimony, and I yield back the 

balance of my time. 
7

 MR. DEAL. I thank the gentlelady. I recognize my friend from 

Illinois, Mr. Shimkus, for an opening statement. 

 MR. SHIMKUS. Thank you, Mr. Chairman. I will just reserve my 

time for questions. 

 MR. DEAL. I recognize Mr. Upton for an opening statement. 

 MR. UPTON. Well, thank you. I have an opening statement and I 

will just insert it in the record. I support the reauthorization of this 

important bill and I look forward to the testimony this morning. 

[The prepared statement of Hon. Fred Upton follows:] 

PREPARED STATEMENT OF THE HON. FRED UPTON, A REPRESENTATIVE IN CONGRESS FROM 

THE STATE OF MICHIGAN

Mr. Chairman, thank you for holding today’s hearing, an important step in moving 

forward with the reauthorization of the Ryan White CARE Act. For the estimated 

16,200 people in Michigan who are HIV positive, the 11,320 people known to be living 

with HIV and AIDS, and the 5,774 who are known to be living with full-blown AIDS, 

this program is a vital source of health care, prescription assistance, and community 

support services. 

 The HIV/AIDS epidemic has changed greatly since it emerged in the early 80s. 

Infection was once a death sentence. Today, HIV for many has become a chronic 

disease, kept in check through access to quality health care, supportive services, and lifesaving medications. The face and geography of the epidemic have changed as well. 

Today, it is rising most rapidly in our minority communities, and particularly among 

African-American women, and in our Southern states. We need to ensure that the Ryan 

White CARE Act has the flexibility to respond to the changing nature of the HIV/AIDS 

epidemic, and I look forward to working with you and with my colleagues on both sides 

of the aisle to reauthorize and update this program. 

 MR. DEAL. I would recognize Ms. Baldwin for an opening 

statement. 

 MS. BALDWIN. Thank you, Mr. Chairman. Thank you to the 

witnesses, also, who are joining us here today. 

 I am glad that the committee is taking up the reauthorization of the 

Ryan White CARE Act. This program is clearly vitally important; in 

fact, it is lifesaving for the estimated 1.1 million Americans who are 

living with HIV and AIDS. 

 It has been nearly 25 years since the first case of AIDS was 

identified, and in this past 25 years, we have seen the epidemic change. 

An HIV-positive diagnosis does not carry with it the expectation of 

rapidly deteriorating health as it once did. Advances in science and 

improved treatment are allowing people with HIV and AIDS to live 

longer than ever before. But as the HIV/AIDS epidemic changes, and as 

we learn more about it, we need to also ensure that we are adequately 

funding important parts of this program. Funding for the AIDS Drug 

Assistance Program, or ADAP, is inexcusably inadequate, and the 

waiting list that many States currently have is unacceptable. 
8

 I am heartened by the Administration’s proposed budget that 

includes a $70 million increase for ADAP funding, and I look forward to 

the House eventually passing a budget that includes that significant 

increase. But I am concerned by some of the proposed changes to the 

Ryan White CARE Act, and I regret that I won’t be able to stay for the 

full hearing today to discuss my concern with the witnesses. But I feel 

that the President’s reauthorization principles propose some fairly drastic 

changes to Ryan White, and at the same time, they are strangely vague. 

For example, the Administration’s principles include changes based on 

phrases like “severity of need” or “core medical services,” yet there is no 

accompanying explanation or definition of what these terms mean, let 

alone how the implementation of these changes would impact people 

who rely on the Ryan White CARE Act funding for needed care. 

 Along those lines, I too have to express my disappointment that this 

hearing’s witness list does not include any stakeholder groups, but I am 

heartened to hear, Mr. Chairman, that there will be a future roundtable 

where stakeholders will be invited, and I do look forward to that future 

opportunity. 

 Lastly, I would like to point out that we have underfunded this 

epidemic in a number of ways, including the underfunding of prevention 

efforts. And while prevention is not a significant part of the Ryan White 

CARE Act, I think it is a serious issue that also deserves our attention 

and discussion. 

 Thank you, Mr. Chairman. 

 MR. DEAL. I thank the gentlelady. I recognize Dr. Burgess from 

Texas for an opening statement. 

 MR. BURGESS. Thank you, Mr. Chairman, and thank you for holding 

this hearing today. I will submit my statement for the record as well, but 

I do want to associate myself with the remarks of Dr. Norwood. It is 

critically important these funds follow the patient and further just note 

that in my district back in Texas, we have a portion of the district where 

African American women are one of the largest growing demographic 

groups that are having to deal with this disease. It is critically important 

that we focus on keeping the money with the disease, keeping the money 

with the patient. I am anxious to hear the testimony of our witnesses 

today. 

 With that, I will yield back. 

 MR. DEAL. I am pleased to recognize the gentlelady from California, 

Ms. Eshoo, for an opening statement. 

 MS. ESHOO. Thank you and good morning, Mr. Chairman and 

members, and to our guest witnesses here today. This is an important 

reauthorization. It always has been, and it remains so. 
9

 As my colleague from California stated, California has the second 

highest AIDS incidence of any State in the Nation. Of course, we are a 

Nation State, the largest and most populous State in the country, and so 

the meaning of this statistic is not a surprise. The Ryan White CARE 

Act plays, therefore, an essential role in the ability of my State and 

localities to meet the healthcare needs of persons living with HIV/AIDS. 

That is why the reauthorization of this Act is critical to the HIV/AIDS 

community in California, and of course, across our Nation. 

 Last July, the White House and HHS released its recommended 

principles for reauthorization of the Ryan White CARE Act. 

Unfortunately, many of the proposals, if enacted, would do serious and 

substantial harm to San Francisco’s HIV infrastructure and would also 

have a very negative impact on California’s HIV funding levels. One of 

my friends and colleagues just said that the money needs to follow the 

patient. Of course it does, but there has to be an infrastructure. 

Wherever we go for our healthcare, there is infrastructure there in order 

to provide care to patients. Patients just don’t show up at a tollbooth; 

there has to be infrastructure. And so the dollars that support that in 

order to care for patients is absolutely essential, and I think that is what 

our debate is going to be about as we reauthorize the Act. In particular, 

the principles called for the elimination of the hold harmless provision 

that protects cities from experiencing rapid declines in resources that 

could dismantle systems of care. This kind of change could mean a $7 

million cut, for example, to San Francisco’s direct HIV funding. This 

represents a 25 percent reduction. That has an effect on patients. People 

should just disabuse themselves of thinking that if you don’t fund 

infrastructure that you really are going to be taking care of people. It 

doesn’t work that way. So this represents a 25 percent reduction from 

the $28 million San Francisco currently receives. 

 There are other proposals that could harm California overall, 

including the proposal that calls for not counting AIDS cases from 

metropolitan areas in determining the allocation of care funds to the 

States. Why anyone would make that kind of proposal, I really can’t 

figure out. It is baffling to me, unless you just want to cut out whole 

swaths of areas where the caseload is higher. This change could result in 

the reduction of nearly $20 million in HIV funding to California, where 

the vast majority of people living with AIDS reside in metropolitan 

areas. That is what it is, I mean, you are going to target a place, target 

metropolitan areas. You can get rid of a lot. But the Ryan White CARE 

Act, I think, was designed to do something else. So I think that there is a 

departure from some of the real core principles of the Act. And 

abandoning these principles, in my view, and I think in many other 

persons’ views, would do irreparable harm, especially at a time when the 
10

CARE Act is actually working. I think that that should be a source of 

pride to Members of Congress. Those that helped establish it, certainly 

Mr. Waxman from the beginning, the colleagues of ours whose shoulders 

we stand on who are not in the Congress any longer. 

 The OMB and the GAO found that the CARE Act has contributed to 

the decline of HIV/AIDS cases and deaths and reached underserved 

groups, including the uninsured and the poor. Lack of access to care and 

disparities are the results of flat funding and recessions, and not problems 

with the legislation. 

 So I look forward to hearing from the witnesses today, and also 

addressing, Mr. Chairman, the key areas where I think the legislation is 

lacking and go back to and appreciate what has worked and why it has 

worked. So I look forward to it and thank you for holding this important 

hearing. I look forward to working with all members of the committee 

on this. This Ryan White CARE Act has always had strong bipartisan 

support, and I think that is why it has been successful. I don’t think we 

want to depart from that tradition as we reauthorize the Act. 

 Thank you. 

 MR. DEAL. I recognize the gentlelady from California, Ms. Bono, 

for an opening statement. 

 MS. BONO. Thank you, Mr. Chairman. I have a written statement I 

will submit, but I also want to just associate myself with my colleagues 

from California and express my concern also, and state that I plan to be 

fighting on this side as much as I can for California in some of these 

changes. I just want to welcome the panelists and thank you very much, 

Mr. Chairman, and Chairman Barton as well for moving this legislation 

that I have been hoping would move for quite some time. 

 So thank you, and I yield back. 

 [The prepared statement of Hon. Mary Bono follows:] 

PREPARED STATEMENT OF THE HON. MARY BONO, A REPRESENTATIVE IN CONGRESS FROM 

THE STATE OF CALIFORNIA

Good morning Chairman Deal and Ranking Member Brown. Thank you for holding 

this important hearing today. I would like to extend particular thanks to Chairman Deal 

and Chairman Barton for their tireless efforts and continued support in moving this 

critical legislation forward. I would also to thank each of our panelists for taking the 

time to speak to us today. 

The Ryan White CARE Act has transformed the way that we provide care to those 

suffering from HIV and AIDS. Since its inception in 1990, this program has undergone 

multiple reauthorizations in an effort to meet this growing and frequently evolving 

epidemic. 

As a representative from California, I have had the opportunity to work closely with 

many groups and individuals who benefit directly from this program. I have had the 

opportunity to see firsthand the impact of this legislation within my own district as 

organizations such as the Desert AIDS Project work tirelessly to provide those in need 
11

with access to care. I look forward to a continued dialogue with each of you to ensure the 

future viability of this program. 

Currently, eleven states and two territories are home to 75% of the population living 

with AIDS. In accordance with that, these thirteen jurisdictions receive 75% of the funds 

distributed by the CARE Act. Funds are going to the epidemic. 

I know that many proposals have included provisions that would eliminate basic 

tenets of the Ryan White funding structure and could have a devastating impact. Many 

of the proposed changes focus on the restructuring of Title I and Title II funds which 

provide funding for eligible metropolitan areas (EMAs). In my own state of California 

there are currently 9 EMAs, approximately 90% of the AIDS community within my state 

is estimated to live within those areas. 

Restructuring of Title I and especially Title II funds could have potentially 

disastrous effects for my state and many other states who have their AIDS population 

concentrated in these metropolitan areas. 

If we are to accurately address the impact of CARE Act funding, a selective analysis 

of only certain components is simply not adequate. We must take into account all Titles 

and components of the CARE Act. 

It is my hope that we can continue to move forward in the reauthorization of this 

critical legislation in a timely manner. The efforts of this committee and the Senate 

HELP committee have been commendable. I would like to thank the respective staffs for 

their hard work and dedication. I look forward to hearing from each of our panelists 

today. 

Thank you and I yield back the remainder of my time. 

 MR. DEAL. I thank the gentlelady. Mr. Waxman is recognized for 

an opening statement. 

 MR. WAXMAN. Thank you, Mr. Chairman. 

 The reauthorization of the Ryan White Act may be one of the most 

important actions by our subcommittee this year. This program has 

literally been a lifesaver for people living with HIV and AIDS. It has 

provided a critical support to cities which have been the center of the 

epidemic, and to States funding critical drug programs to treat the 

disease. I am distressed that the hearing is so limited in the witnesses 

that are providing views to us today. We should have the benefit of the 

views of stakeholders in this process: States, localities, caregivers, and 

people who are living with HIV and AIDS, and I hope as we move 

forward with the reauthorization we will hear from those parties on the 

record and they will have the opportunity to examine the legislative 

proposals this committee will vote on and to inform our actions with 

their views. 

 We know the Administration has proposed some principles that 

would result in dramatic changes in the Act, what it funds and who gets 

support. These principles are highly controversial, and today we are 

hearing their point of view. We know the GAO has done a study looking 

at funding disparities under the Act, and there is much that is worthwhile 

to consider in their work, but they provided only one part of the picture. 

 I want to state clearly one thing that is really important. In my view, 

this Act has been extremely effective. It is an important piece of 
12

legislation, and throughout its history it has been dealt with in a 

bipartisan manner and has had broad bipartisan support. Changes that 

have been made have been made at the margin, adjusting the bill to deal 

with emerging problems and developments, but without disrupting the 

program that was working. We all know this job has been made more 

difficult because we have not had an option throughout many of these 

years to add the necessary additional funds to the program. So when new 

epicenters of the disease have appeared, we have been forced to 

reallocate the limited part of funds available, rather than add the critical 

new dollars that would be needed. 

 In my view, we found ourselves in this position because the 

Administration and the Republicans who control the Congress have the 

wrong fiscal policies and priorities, but we will leave that aside for the 

moment. Even given these constraints, if we reauthorize this program 

with continued broad support, we must approach the issue with full 

attention to the need to be sure that we don’t wreck what is working. 

 In that regard, I want to speak specifically to the issue of California, 

but I am pleased to note that we have many Californians on the 

subcommittee today who have expressed the view that we all strongly 

hold--we have always been one of the earliest centers of the disease, and 

we remain a State with more persons living with AIDS and with HIV 

than only one other State, New York, and we have the second largest 

number of minorities with AIDS reflecting the subject of the trend. It is 

one of the five States with the most cases outside of EMAs. Yet 

somehow, there is a perception that California gets too much money, that 

it doesn’t have a problem that requires this level of funding anymore. In 

fact, when one looks at the funding provided under all the titles of the 

Ryan White Act, California’s payment per person with AIDS is actually 

under the national average. I do not put into the record these statements 

because I am only concerned about the people in California. I 

understand and support helping people struggling with AIDS all over the 

country, but I can’t accept the taking of necessary funds away from 

people with AIDS simply because there is a mistaken impression that 

California’s programs are overfunded. Nothing could be further from the 

truth. 

 I look forward to working with all our colleagues on this 

subcommittee, and fashioning a strong bipartisan consensus. 

 Thank you. 

 MR. DEAL. Thank you. Mr. Pallone is recognized for an opening 

statement. 

 MR. PALLONE. Thank you, Mr. Chairman. 

 Since the very first cases of AIDS were reported in the early 1980s, 

our Nation’s response to the epidemic has made tremendous strides, 
13

thanks in large part to services funded by the Ryan White CARE Act. 

But in spite of our efforts, 45,000 new infections are reported each year. 

Since the beginning of this epidemic, an estimated 530,000 Americans 

with AIDS have died. That number has been growing at a rate of 

approximately 14,000 new deaths per year, and racial and ethnic 

minorities continue to be disproportionately effected by HIV/AIDS, 

especially African Americans, Latinos, and Native Americans. 

Similarly, women and young people appear to be at increased risk and 

account for a growing proportion of diagnoses. 

 In my home State of New Jersey, we have the highest proportion of 

cumulative AIDS cases in women, and we rank third in cumulative 

pediatric AIDS cases and fifth in overall cumulative AIDS cases. In 

response, New Jersey has worked to develop a comprehensive array of 

medical care and treatment services, which are funded in part by private 

organizations, State revenues, and CARE Act funds. For example, I am 

proud to say that New Jersey has one of the most generous ADAP 

programs in the country. We have an open formulary and no waiting list. 

People infected with HIV/AIDS living in New Jersey have access to a 

host of other services, including primary medical care, mental health 

services, substance abuse services, oral health, case management, 

nutritional services, and transportation services. But I am concerned that 

some of the proposals put forth by the Bush Administration could 

severely harm New Jersey’s ability to maintain these services, which I 

will discuss later during the question period. 

 Mr. Chairman, I would like to note that since it was signed into law, 

the CARE Act has always enjoyed strong bipartisan support from 

members of this committee because we all realize the importance of 

providing medical care to people living with HIV/AIDS, as well as their 

families. Along those lines, I am concerned that no one from any of the 

stakeholder groups was invited to testify before the committee today, in 

spite of Democratic requests. I was not here, Mr. Chairman, at the 

beginning, and I know that you did mention or make a commitment to 

have some kind of input from stakeholder groups. I hope that means a 

subsequent hearing. I am not sure what exactly it means, but I still 

believe that those people should have been here today for this public 

hearing. 

 My point is that we have to work together in a bipartisan fashion on 

this bill to reauthorize the CARE Act because it is a crucial bill and 

certainly, this is the type of thing where I think we can work on a 

bipartisan basis. And so every effort should be made to accomplish that 

goal. 

 I yield back. 
14

 MR. DEAL. I thank the gentleman. Mr. Strickland is recognized for 

an opening statement. 

 MR. STRICKLAND. Thank you, Mr. Chairman. I will be very brief. 

 I just want to point out something that I think we all realize, that 

there are few opportunities that we have on this committee and in this 

body to pass legislation that has a direct connection between whether or 

not some people survive or do not survive. I have a very close family 

member who has benefited from this Act, perhaps would not be living 

today were it not for this legislation. I am pleased, as has been expressed 

here, that this is something that both Democrats and Republicans have 

supported in the past, and I look forward to this effort for the future. 

 Thank you. I yield back. 

 MR. DEAL. I thank the gentleman, and recognize Mr. Towns for an 

opening statement. 

 MR. TOWNS. Thank you very much, Mr. Chairman. I also would 

like to thank the representatives of the Administration who have come 

here to talk to Congress about these critical issues. We welcome Dr. 

Duke and Dr. Fenton to discuss the Administration’s principles for 

ensuring fair and equitable access to care for people in our Nation 

currently living with AIDS and HIV. I applaud the Administration for its 

initial positive response concerning reauthorization of Ryan White. 

 The President said in his State of the Union “A hopeful society acts 

boldly to fight disease like HIV/AIDS, which can be prevented and 

treated and defeated.” The President then asked Congress to reform and 

reauthorize the Ryan White Act, and provide new funding to States so 

we end the waiting list for AIDS medicine in America. 

 I urge all of us to tackle these issues in a positive spirit that the 

President began with this year. Let us make that statement a reality. 

 However, in our endeavors I am concerned that we not target 

particular localities that have born the historic brunt of the HIV/AIDS 

epidemic. Instead, let us celebrate the new treatments that extend life for 

those persons living with AIDS by making sure that they are available to 

all, especially to those least able to afford them. The tragedy is even 

more heightened in minority communities. Of those people living with 

AIDS, 75 percent are minorities and 25 percent are women. I am also 

very concerned with the rate of HIV/AIDS among prison inmates. The 

AIDS rate among inmates in our Nation’s prisons is four times higher 

than in the general population. AIDS is also the second leading cause of 

death in our prisons. Infected prisoners, particularly in urban areas like 

New York, may be released into the general population without receiving 

treatment for their condition. This forces an increased burden for care 

already overburdened local health facility. 
15

 I urge the Administration to take a fair approach to those States and 

localities that have already born the brunt of the AIDS epidemic, and if 

we do that, I think that we can really begin to change the situation that 

we now find ourselves in. I think that this is a great opportunity for this 

committee and a great opportunity for the Nation. 

 Thank you so much, Mr. Chairman. I yield back. 

 MR. DEAL. I thank the gentleman. I believe we have heard from all 

the Members who are present on opening statements, so we will proceed 

to the witnesses themselves. I am pleased to introduce them to the 

subcommittee and to the audience. 

 MR. DEAL. First of all, Dr. Elizabeth Duke, who is the 

Administrator of Health Resources and Services Administration of the 

U.S. Department of Health and Human Services; Dr. Kevin Fenton, who 

is the Director of the National Center for HIV, STD, and TB Prevention 

of the Centers for Disease Control and Prevention; and Ms. Marcia 

Crosse, the Director of Health Care of the U.S. Government 

Accountability Office. 

 Ladies and gentleman, we are pleased to have you here. I will tell 

you at the outset that your written testimony has been made a part of the 

record, and we would, of course, welcome your summarization of that in 

your oral testimony. We will follow the completion of your opening 

statements with questions from the subcommittee itself. 

 Dr. Duke, we will begin with you. 

STATEMENTS OF ELIZABETH M. DUKE, ADMINISTRATOR, 

HEALTH RESOURCES AND SERVICES 

ADMINISTRATION, U.S. DEPARTMENT OF HEALTH AND 

HUMAN SERVICES; KEVIN FENTON, DIRECTOR, 

NATIONAL CENTER FOR HIV, STD, AND TB 

PREVENTION, CENTERS FOR DISEASE CONTROL AND 

PREVENTION, U.S. DEPARTMENT OF HEALTH AND 

HUMAN SERVICES; AND MARCIA CROSSE, DIRECTOR, 

HEALTH CARE, U.S. GOVERNMENT ACCOUNTABILITY 

OFFICE 

DR. DUKE. Thank you, sir. Mr. Chairman and members of the 

subcommittee, I am thankful for this opportunity to meet with you today 

on behalf of the Department of Health and Human Services to discuss the 

reauthorization of the Ryan White CARE Act. We thank you very much 

for making reauthorization of the CARE Act an important part of your 

agenda. It is an important Act which has long had bipartisan support, 

and we are here to work with you all. I do appreciate the opportunity to 

summarize and submit for the record my longer testimony. 
16

 The Ryan White CARE Act is a comprehensive approach to the 

provision of medical care and treatment and support services to 

individuals living with HIV/AIDS who have no other way to obtain such 

care. The program is administered through the Health Resources and 

Services Administration within the Department of Health and Human 

Services. President Bush, in his 2006 State of the Union stressed the 

importance of this program and he asked the Congress to “reform and 

reauthorize the Ryan White CARE Act, and provide new funding to 

States so we can end the waiting list for AIDS medication in America.” 

Since its last reauthorization, we have been able to provide anti-retroviral 

treatment, primary care, and support services to over a half million 

people annually in the United States, Puerto Rico, Guam, the Virgin 

Islands, and eligible U.S. territories. 

 In 2004, an estimated 65 percent of the individuals were racial 

minorities, 33 percent were women, and 87 percent were either uninsured 

or received public health benefits. The Ryan White CARE Act programs 

have provided important benefits to these populations. Overall, AIDS 

mortality is down and lives have been extended with medications 

purchased through the AIDS Drug Assistance Program, the ADAP 

program. Pregnant women have been provided with care that has 

allowed them to give birth to children free from HIV infection, and 

thousands have received support services that have allowed them to 

access healthcare and to remain in care. 

 The structure of the Ryan White CARE Act allows for local 

flexibility and responsiveness in meeting the diverse needs in different 

regions of the country. It fosters collaboration among Federal, State, and 

local governments, and public and private entities to create a continuum 

of care for people living with HIV/AIDS. 

 Last July, the Administration emphasized five key principles for 

reauthorization of the Ryan White CARE Act. First, to serve the 

neediest first. Second, to focus on lifesaving, life-extending services. 

Third, to increase prevention efforts. Fourth, to increase accountability, 

and fifth, to increase flexibility. The President has made fighting the 

spread of HIV/AIDS a top priority of his Administration, and he will 

continue to work with Congress to encourage prevention and the 

provision of appropriate care and treatment for those suffering from this 

disease. The President requested $2.08 billion in ‘06, and the Congress 

appropriated $2.06 billion for the program. The President’s 2007 budget 

request for the CARE Act is $2.16 billion, an increase of $95 million for 

several elements of a new HIV/AIDS initiative. Further elements of this 

domestic initiative focusing on testing in the areas of greatest need are 

requested outside of the CARE Act. 
17

 The CARE Act request will support a comprehensive approach to 

address the health needs of persons living with HIV/AIDS consistent 

with the reauthorization principles. The budget also includes a new 

authority to increase program flexibility by allowing the Secretary to 

transfer up to five percent of the funding provided for each part of the 

Ryan White CARE Act to any other part of the Act. Of the new $95 

million requested, $70 million will address the ongoing problem of State 

waiting lists and provide care and lifesaving medications to those newly 

diagnosed as a result of increased testing efforts. The remaining $25 

million will be used to expand outreach efforts by providing new HIV 

community action grants to intermediaries, including faith and 

community based organizations, and to provide technical assistance and 

sub-awards to grassroots organizations. 

 We can be proud of the accomplishments of the Ryan White CARE 

Act and the dedication of the people who make it work. The program 

has reached over 571,000 uninsured and underinsured persons affected 

by HIV/AIDS annually. Medication has been provided to almost 

139,000 persons living with HIV/AIDS in 2004. The program strives to 

reach those individuals who are most in need of services. Today, people 

with HIV/AIDS are living longer, healthier lives in part because of this 

Act. To make this legislation more responsive in the future, the 

Administration urges Congress to take into account the stated principles 

it has offered for reauthorization of the CARE Act. We look forward to 

working with the Congress throughout this reauthorization process. 

 I thank you for having us here this morning. 

 [The prepared statement of Dr. Elizabeth M. Duke follows:] 

PREPARED STATEMENT OF DR. ELIZABETH M. DUKE, ADMINISTRATOR, HEALTH RESOURCES 

AND SERVICES ADMINISTRATION, U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

Mr. Chairman, Members of the Subcommittee, I am thankful for the opportunity to 

meet with you today on behalf of the Department of Health and Human Services (HHS) 

to discuss the reauthorization of the Ryan White Comprehensive AIDS Resources 

Emergency (CARE) Act. 

Background

The Ryan White CARE Act is a comprehensive approach to the provision of 

medical care, treatment, and support services to individuals living with HIV/AIDS who 

have no other means with which to obtain such care. The program is administered 

through the HIV/AIDS Bureau of the Health Resources and Services Administration 

(HRSA) within the Department of Health and Human Services (HHS). The Federal Ryan 

White CARE Act was enacted in 1990; it was amended and reauthorized in 1996 and 

again in 2000. The authorization of appropriations expired on September 30, 2005. 

President Bush in his 2006 State of the Union Address stressed the importance of this 

program and asked Congress to, “reform and reauthorize the Ryan White Act and provide 

new funding to states so we end the waiting lists for AIDS medicines in America.” 
18

Since its last reauthorization, we have been able to provide antiretroviral treatment, 

primary care, and support services to over half a million people annually in the United 

States, Puerto Rico, Guam, the U.S. Virgin Islands, and eligible U.S. territories. In 2004, 

an estimated 65 percent of these individuals were racial minorities, 33 percent were 

women, and 87 percent were either uninsured or received public health benefits. The 

Ryan White CARE Act programs have provided important benefits to these populations. 

Overall, AIDS mortality is down and lives have been extended with HIV/AIDS 

medications purchased through the AIDS Drug Assistance Program (ADAP). Pregnant 

women have been provided with care that has allowed them to give birth to children free 

from HIV infection, and thousands have received support services that have allowed 

them to access and remain in health care. 

The structure of the Ryan White CARE Act allows for local flexibility and 

responsiveness in meeting diverse needs in different regions. It fosters collaboration 

among Federal, State, and local governments, and public and private entities to create a 

continuum of care for people living with HIV/AIDS. 

The Ryan White CARE Act is organized into distinct program components. Title I 

provides emergency assistance to Eligible Metropolitan Areas (EMAs) that are most 

severely affected by the HIV/AIDS epidemic. To be eligible for Title I funding, an area 

must have reported at least 2,000 AIDS cases during the previous 5 years and have a 

population of at least 500,000. 

Title II of the CARE Act provides grants to all 50 States, the District of Columbia, 

Puerto Rico, Guam, the U.S. Virgin Islands, and eligible U.S. territories. Title II grants 

support a wide range of care and support services. Title II also provides grants to States 

for Emerging Communities – that is, localities reporting between 500 and 1,999 AIDS 

cases over the most recent 5 years. Additionally, Title II funds the AIDS Drug 

Assistance Program (ADAP), which provides medications for the treatment of HIV 

disease. 

Title III, Early Intervention Services (EIS), supports comprehensive primary health 

care and certain services for individuals who have been diagnosed with HIV. Services 

include education to prevent transmission of HIV and case management to assure 

continuity of care. Title III grants expand the capacity of organizations providing 

primary care to indigent HIV-positive individuals. One third of all Title III grantees are 

community health centers. 

Title IV provides community-based, family-centered services to women, children, 

and youth living with HIV and their families. Services include: primary and specialty 

medical care, psychosocial services, logistical support, outreach and case management. 

The Ryan White CARE Act includes Part F – the Special Projects of National 

Significance (SPNS), the AIDS Education and Training Centers (AETCs), and the 

HIV/AIDS Dental Reimbursement Program. SPNS grants support innovative programs 

that hold promise for improving health outcomes. The AETCs provide education and 

training on a variety of topics for clinicians who treat people living with HIV/AIDS, with 

a focus on primary HIV care for underserved populations. The Dental Reimbursement 

Program assists accredited dental schools and postdoctoral programs with uncompensated 

costs incurred in providing dental treatment to patients with HIV infection. The 

Community Based Dental Partnership Program funds eligible entities in their efforts to 

increase access to oral health care and to support oral health service delivery and provider 

training in community settings. 

Principles of Reauthorization 

Last July, the Administration emphasized five key principles for reauthorization of 

the Ryan White CARE Act: (1) serve the neediest first; (2) focus on life-saving and lifeextending services; (3) increase prevention efforts; (4) increase accountability; and (5) 

increase flexibility. The President has made fighting the spread of HIV/AIDS a top 
19

priority of his Administration, and he will continue to work with Congress to encourage 

prevention, and the provision of appropriate care and treatment to those suffering from 

the disease. The President requested $2.08 billion for FY2006 and Congress appropriated 

$2.06 billion for the program. The President’s FY2007 budget request for the CARE Act 

HIV/AIDS activities is $2.16 billion, an increase of $95 million for several elements of a 

new Domestic HIV/AIDS initiative (further elements of that initiative, focusing on 

testing in the areas of greatest need, are requested outside the CARE Act). The request 

will support a comprehensive approach to address the health needs of persons living with 

HIV/AIDS, consistent with the reauthorization principles. The budget also includes a 

new authority to increase program flexibility by allowing the Secretary to transfer up to 

five percent of funding provided for each Part of the Ryan White CARE Act to any other 

Part. Of the new $95 million requested, $70 million will address the on-going problem of 

State waiting lists and provide care and life-saving medications to those newly diagnosed 

as a result of increased testing efforts. The remaining $25 million will be used to expand 

outreach efforts by providing new HIV community action grants to intermediaries 

including faith and community-based organizations, and to provide technical assistance 

and sub-awards to grassroots organizations. 

In order to serve the neediest first, objective indicators must be established to 

determine the severity of need for funding core medical services. The Secretary of 

Health and Human Services (HHS) would develop a severity of need for core services 

index (SNCSI). This index would be based upon objective criteria and be focused on 

core services. It would take into account variables such as HIV incidence and 

prevalence, levels of poverty, and availability of other resources. 

The Administration proposes focusing on life-saving and life-extending services by: 

establishing a set of core medical services; requiring that 75 percent of funds for Titles I, 

II, III and IV be spent on these core services; and maintaining a Federal list of core 

medications for the AIDS Drug Assistance Program (ADAP). 

Requiring States to implement routine voluntary HIV testing in public facilities and 

working with private health care providers to implement testing will increase disease 

detection and further prevention efforts. With an estimated 250,000 HIV-positive 

individuals unaware of their HIV-positive status, testing is a key element in the 

Administration’s prevention efforts. States will be encouraged to adopt important 

prevention strategies upon receipt of their Ryan White allocations. 

Grantees are more likely to be held accountable if: States are required to submit HIV 

data; grantees are required to report on system and client –level data and progress; the 

payor-of-last-resort provision is strengthened; States coordinate HIV care and treatment 

with other federally funded programs to maximize efficiency and effectiveness; double 

counting of AIDS cases between eligible metropolitan areas (EMAs) and States is 

eliminated; and the “hold harmless” provisions are deleted. 

Today, because of the way AIDS cases are counted, that is by including cases 

spanning the last 10 years, metropolitan areas with newer epidemics receive 

disproportionately less than those with more longstanding problems. In order to more 

accurately reflect the current status of the epidemic, the provisions that entitle cities to be 

“held harmless” from funding reductions should be eliminated. 

Allowing the Secretary of HHS to redistribute unallocated balances based on the 

severity of need and allowing planning councils to serve as voluntary and advisory bodies 

to mayors will increase flexibility in the program. To maximize all CARE Act funding, 

unspent funds from Titles I and II would revert to the Secretary of HHS and the Secretary 

would extend those funds to ADAP programs or areas with the greatest need. 

We can all be proud of the accomplishments of the Ryan White CARE Act and the 

dedicated people who make it work. The program has reached over 571,000 uninsured or 

underinsured persons affected by HIV/AIDS annually. Medication was provided to an 

estimated 138,834 persons living with HIV/AIDS in 2004. The program strives to reach 
20

those individuals who are the most in need of its services. Today, people with HIV/AIDS 

are living longer and healthier lives in part because of this Act. In order to make the 

legislation more responsive in the future, the Administration urges Congress to take into 

account the above stated principles in the reauthorization of the Ryan White CARE Act. 

Thank you for the opportunity to discuss the Administration’s principles for the 

reauthorization of the Ryan White CARE Act. We look forward to working with 

Congress throughout the reauthorization process. 

 MR. DEAL. Thank you. Dr. Fenton. 

DR. FENTON. Good morning, Mr. Chairman and members of the 

subcommittee. Thank you for the opportunity to discuss current trends in 

HIV/AIDS in the United States, and the status of State HIV surveillance 

systems. 

 Twenty-five years ago, the first cases of AIDS were reported in the 

United States. Although the struggle to prevent HIV infections is not 

over, we have made substantial progress and achieved major successes. 

For instance, the dramatic decrease in mother-to-child HIV transmission 

is one of the great success stories of HIV prevention. We have also seen 

declines in the number of HIV/AIDS cases attributed to injecting drug 

use. The number of new infections annually has declined from more 

than 150,000 in the late 1980s to an estimated 40,000 per year today. 

However, the HIV/AIDS epidemic has changed in other important ways. 

In the early days of the epidemic, the greatest number of new infections 

was found among white men who have sex with men, and among 

injecting drug users. Today, the epidemic has a growing impact on racial 

and ethnic minority, particularly African Americans and on women. 

 CDC is responsible for ensuring the integrity of our national 

HIV/AIDS surveillance system. As with other diseases, individual State 

governments have authority for statutory and regulatory issues for 

HIV/AIDS reporting and data protection, including the decision 

regarding what type of system will be used for disease reporting. Except 

for HIV, all the reported infectious diseases, including AIDS, are 

routinely reported to States using name-based reporting systems. It is 

important to note for confidentiality purposes that the CDC does not 

receive the names of individuals. 

 Currently, 43 States use confidential name-based HIV case reporting, 

as shown in the chart to my right. The remaining seven States and the 

District of Columbia use code or name-to-code reporting. Among those 

eight areas, there are seven different codes. Several of the remaining 

States have notified CDC that they intend to implement name-based HIV 

surveillance in 2006. Only last week, the Governor of California enacted 

legislation which moves this State from a code-based to an integrated 

name-based reporting system. 

 There are three primary uses of surveillance data. First, epidemic 

monitoring; second, prevention planning to target prevention 
21

interventions; and third, allocation of local, State, and Federal funds for 

prevention, care, and treatment services, including the Ryan White 

Comprehensive AIDS Resource Emergency Act. CDC strongly supports 

the requirement in the Ryan White CARE Act for States to implement 

HIV reporting by 2007. CDC’s policy is to accept HIV infection and 

AIDS case surveillance data only from areas conducting confidential 

name-based reporting, because this reporting has been shown to routinely 

achieve high levels of accuracy and reliability. HIV surveillance that is 

conducted using coded patient identifiers has not been shown to routinely 

produce equally accurate, timely, or complete data compared to that 

conducted using confidential name-based surveillance methods. 

Currently, only confidential name-based HIV reporting integrated with 

AIDS surveillance data can be used by States to identify and remove 

cases that are counted in more than one State before they are reported to 

CDC’s national surveillance database. States that have implemented 

code-based systems consistently inform CDC that these systems are 

more complex, more expensive, and burdensome than name-based 

reporting systems. CDC is aware of one systematic quantitative 

evaluation which compared the relative costs of name-based systems to 

systems using codes and named codes. This evaluation found that a 

name-to-code reporting system was 15 percent more expensive than 

name-based reporting, and reporting based exclusively on codes was 50 

percent more expensive than name-based reporting. CDC is and 

continues to provide technical assistance to States transitioning from 

code to name-based systems to ensure that their data can be integrated 

into the National HIV Data System as quickly as possible. CDC 

continues to provide funding and technical assistance to States that use 

code-based methods for identifying patients in their HIV surveillance 

system. 

 In summary, CDC is responsible for ensuring the integrity of the 

National HIV and AIDS Surveillance System to accurately monitor the 

epidemic in the United States. CDC continues to work closely with the 

States to help them adopt and implement high quality HIV surveillance 

systems. Having all States collect HIV information in the same manner 

will ensure that the Nation has reliable and valid data to monitor the 

scope of the epidemic, to plan for and evaluate prevention, care, and 

treatment programs, and to focus these programs on persons most at risk. 

 Thank you again for this opportunity, and I will pleased to answer 

any questions. 

 [The prepared statement of Dr. Kevin Fenton follows:] 
22

PREPARED STATEMENT OF DR. KEVIN FENTON, DIRECTOR, NATIONAL CENTER FOR HIV,

STD, AND TB PREVENTION, CENTERS FOR DISEASE CONTROL AND PREVENTION, U.S.

DEPARTMENT OF HEALTH AND HUMAN SERVICES

Introduction 

 Good morning Mr. Chairman and Members of the Subcommittee. My name is Kevin 

Fenton and I am Director of the National Center for HIV, STD, and TB Prevention at the 

Centers for Disease Control and Prevention (CDC). I am accompanied by Matt 

McKenna, Chief of the Center’s HIV Incidence & Case Surveillance Branch. Thank you 

for the opportunity to discuss current trends in HIV/AIDS in the United States and the 

status of state HIV surveillance systems. 

 Twenty-five years ago, the first cases of AIDS were reported in the United States. 

HIV and AIDS remains one of the greatest public health challenges today. To date, HIV 

has claimed the lives of more than 22 million people worldwide, and in the United States, 

more than 500,000 people have died of AIDS. The number of new HIV infections 

annually has declined from more than 150,000 in the late 1980s to an estimated 40,000 

per year today. An estimated 1 - 1.2 million people currently are living with HIV/AIDS 

in the United States. Due to more effective treatment, people are living longer and 

healthier lives after a diagnosis of HIV. Despite the growing pool of persons capable of 

transmitting the virus, the number of persons becoming newly infected each year has 

remained constant over the last 10 years, at approximately 40,000 new infections per 

year. 

While the struggle to prevent new HIV infections is not over, there have been some 

major successes. For instance, the dramatic decrease in mother to child (perinatal) HIV 

transmission is one of the great success stories of HIV prevention. Since the beginning of 

the epidemic, the number of infants infected with HIV through mother-to-child 

transmission has decreased by almost 90%, from an estimated peak of 1,750 HIVinfected infants born each year during the early to mid-1990s to between 140 and 230 

infants in 2002. These declines are due to multiple interventions, including routine 

voluntary HIV testing of pregnant women, the use of rapid HIV tests at delivery for 

women of unknown HIV status, and the use of antiretroviral therapy by HIV-infected 

women during pregnancy and infants after birth. 

We have also seen declines in the number of HIV and AIDS cases attributed to 

injection drug use. For example, the number of AIDS cases attributed to injection drug 

use has declined by about 15% from 2000 to 2004. 

 In addition to the dramatic decline in the occurrence of new cases since the 

beginning of the epidemic, the HIV/AIDS epidemic has changed in other important ways. 

In the early days of the epidemic, the greatest number of new infections was found 

among white men who have sex with men (MSM) and among injection drug users. 

Today, while men who have sex with men overall still account for the largest percentage 

of new HIV infections, the epidemic has expanded to have a growing impact on racial 

and ethnic minorities (particularly African Americans). During 2001-2004 in 35 areas 

with HIV case reporting, 51% of all new HIV/AIDS diagnoses were in African 

Americans. The epidemic is also affecting more women. Early in the epidemic, HIV 

infection and AIDS were diagnosed for relatively few women and female adolescents. 

Today, women account for more than one quarter of all new HIV/AIDS diagnoses. 

Women of color are especially affected by HIV infection and AIDS, and in 2002 (the 

most recent year available) HIV infection was the leading cause of death for African 

American women aged 25–34 years. 

Of great concern to us is the approximately 25 percent of persons with HIV who do 

not know they are infected. We believe that infections transmitted from this group 

account for more than half of new HIV infections each year, underscoring the rationale 

for our substantially increased efforts to reach at-risk communities with HIV testing 
23

services. When people know their status they are more likely to protect their partners 

from infection. Knowledge of one’s HIV infection can help prevent the spread of HIV to 

others. 

HIV surveillance in the United States 

A robust surveillance system provides a strong foundation for good public health 

programs. Surveillance data are crucial to informing and guiding effective and evidencebased prevention efforts. Surveillance for HIV/AIDS has evolved over time in response 

to changes in the epidemic, development in diagnostics, technologies and treatments. 

Initial surveillance was for AIDS cases, but as new diagnostic tools have become 

available, and our understanding of the disease pathogenesis has evolved, so too have our 

methods for surveillance. Today, surveillance of HIV/AIDS is among the most complex 

for any infectious disease—relying upon multiple methods, data sources and analytic 

techniques. Having accurate information about the HIV epidemic requires obtaining 

information about several important events over the life of a case, from initial infection, 

through diagnosis, to clinical and laboratory markers of illness, through death. 

CDC is responsible for ensuring the integrity of the national HIV/AIDS surveillance 

system to accurately monitor the epidemic in the United States. CDC provides funding, 

technical assistance, and coordinates activities with states to aggregate data that constitute 

the national system. CDC also issues recommended security and confidentiality policies 

and procedures to state and local surveillance programs that are consistent with the 

agency standards for the security of surveillance data. CDC requires that recipients of 

federal funds for HIV/AIDS surveillance establish the minimum security standards and 

include their security policy in applications for surveillance funds. As with other 

diseases, individual state governments have authority for statutory and regulatory issues 

for HIV/AIDS reporting and data protection, including the decision regarding what type 

of system will be used for disease reporting, such as name-based or code-based. Except 

for HIV, all other reported infectious diseases, including AIDS, are routinely reported to 

states using name-based reporting systems. It is important to note, for confidentiality 

purposes, that the CDC does not receive the names of individuals. This information 

resides with public health authorities at the state level. 

Since the beginning of the epidemic, AIDS surveillance has been a cornerstone of 

national, state, and local efforts to monitor the scope and impact of the HIV epidemic. 

AIDS surveillance data, however, no longer accurately describe the full extent of the 

epidemic, as effective therapies have slowed the progression of HIV disease. Since 1999, 

CDC has advised states to conduct HIV reporting using the same name-based approach 

currently used for AIDS surveillance nationwide. Currently, 43 states use confidential 

name-based HIV case reporting. The remaining seven states and the District of Columbia 

use code or name-to-code reporting. Among those eight areas there are seven different 

codes. Several of the remaining states have notified CDC that they intend to implement 

name-based HIV surveillance in 2006. In fact, on April 17, 2006, the Governor of 

California signed into law SB 669 which has moved the state from a code-based to an 

integrated name-based reporting system. 

Use of HIV/AIDS Data 

 CDC’s HIV/AIDS surveillance system is the nation’s key source of information 

used to track the epidemic. Surveillance activities provide demographic, laboratory, 

clinical and behavioral risk data that are used to identify populations at greatest risk for 

HIV infection. There are three primary uses of surveillance data: 1) epidemic 

monitoring, including estimates of incidence and prevalence of HIV and AIDS in the 

population, estimates of incidence of HIV infection, and changes and trends in HIV and 

AIDS in populations at risk; 2) prevention planning to target prevention interventions, 

evaluate their effectiveness, and facilitate access to health, social and prevention services; 
24

and 3) allocation of local, state, and federal funds for prevention, care and treatment 

services, including the Ryan White Comprehensive AIDS Resources Emergency Act 

(RWCA). 

CDC surveillance data for AIDS and HIV disease are used by the Health Resources 

and Services Administration (HRSA) to determine funding levels under the RWCA. 

Each year, CDC provides to HRSA all AIDS case counts for states and eligible 

metropolitan areas (EMAs) based on reports from state health departments for the 

previous 10, 12-month periods, as required by law. These data are not adjusted in any 

way and constitute crude, counts of reported cases as prescribed in the current RWCA 

legislation. CDC also provides HRSA with bi-annual survival weights to calculate the 

estimated living cases for computation of the Title I and II grant awards. HRSA uses 

CDC’s surveillance data to determine Title I and II allotments as well as to identify areas 

that qualify as EMAs and emerging communities. 

History of HIV/AIDS Reporting 

At the beginning of the HIV epidemic, before we even knew that HIV causes AIDS, 

surveillance of this public health problem could only be conducted by tracking AIDS 

cases and deaths. In the early 1980s when all states implemented mandatory reporting 

for this condition, they implemented the same system used for all other reportable 

conditions where the name of the affected person served as the patient identifier. 

 In 1985, when the first diagnostic test for HIV became available, Minnesota and 

Colorado were the first states to begin conducting surveillance for persons diagnosed 

with HIV but who were not yet sick with AIDS. These states extended their existing 

systems and used name-based reporting for HIV diagnosis. By the end of 1994, when 

CDC began to support national aggregation of surveillance data on non-AIDS HIV, 25 

states collecting this information were using name-based systems. Four other states 

(Maryland, Texas, Connecticut, and Oregon) were using codes. 

 Numerous formal evaluations of name-based reporting for AIDS were conducted 

during the late 1980s and early 1990s. These evaluations demonstrated that this was a 

highly accurate and reliable method for conducting surveillance for AIDS and non-AIDS 

HIV. Because the vast majority of states were using name-based systems for non-AIDS 

HIV, the fact that name-based HIV and AIDS case surveillance had been shown to be 

highly accurate and reliable, and no formal evaluations of code-based systems had been 

conducted, CDC determined that only name-based reports would be accepted into the 

data collection system for the national database. 

 In 1995, CDC convened a meeting of states conducting non-AIDS HIV surveillance 

(code and name-based) to review the operational, technical, and scientific challenges 

associated with surveillance using coded identifiers. The states recommended that CDC 

evaluate additional coded identifiers and assist them in documenting and disseminating 

the results of their findings. With CDC collaboration and support, Texas and Maryland 

conducted an evaluation of their code-based systems based on reports submitted during 

1994-1996. This research documented nearly 50 percent incomplete reporting and other 

deficiencies in the accuracy and reliability of these systems. Texas subsequently 

switched to name-based reporting; Maryland continued to execute and evaluate its codebased system. 

 The other major outcome of this 1995 meeting was a request from the states that 

research be done to determine whether name-based reporting discouraged HIV testing. 

CDC and the University of California-San Francisco did several evaluations, all of which 

showed no impact of reporting laws on testing behavior. The two main reasons people 

reported for not testing for HIV were not perceiving themselves at risk and being afraid 

to find out that they were positive. 

 In 1997, the Council of State and Territorial Epidemiologists promulgated a position 

statement recommending the addition of non-AIDS HIV to the national public health 
25

surveillance system. In 1999, CDC published formal guidelines for the conduct of nonAIDS HIV surveillance. These recommendations provided performance standards for 

evaluating HIV surveillance systems (name or code); reviewed the existing evidence for 

the reliability and accuracy of varying methods for reporting this condition; and based on 

the existing evidence at that time, “advised” that states use name-based systems. 

However, CDC also stated that it would continue to work with states to develop and 

implement standardized methods for evaluating surveillance systems using name and 

code-based data. Throughout all subsequent national meetings, as well as in discussions 

with states, CDC reiterated that it “advised” states to use name-based reporting, and the 

agency’s commitment to develop standardized evaluation methods. 

In 2001, CDC funded 10 states (3 code-based and 7 name-based) to pilot methods 

for evaluating these systems. Two of the code-based states--Illinois and Washington--

have subsequently switched to name-based reporting. Also in 2001, CDC launched a 

national evaluation of interstate duplicate reports (i.e. multiple reports from multiple 

states that provide information about the same person.) This was necessary because the 

great success of HIV treatments meant that persons with HIV and AIDS were living 

longer, healthier lives, and were more likely to move across and within states. From the 

outset of this evaluation, it was clear that technical problems made it impossible to 

efficiently include code-based reports. These problems included: 1) the variety of codes 

used by different states conducting this type of surveillance; 2) the lack of a central, 

standardized, national database with code-based reports; and 3) the inability of states 

using codes to adequately communicate with states using names regarding potential 

duplicate records. Therefore, only name-based reports could be included in this interstate 

de-duplication effort. The results of this assessment indicated that the number of 

duplicate reports for non-AIDS HIV cases varied a great deal from state to state, and 

exceeded the proportion of duplicate case reports for AIDS cases. 

Following completion of the interstate duplication study, CDC did three things: 1) 

identified and eliminated all identified records attributable to duplicate reporting in the 

national database; 2) implemented a formal system for coordinating the ongoing 

identification and removal of duplicate reports in the national database; 3) published and 

disseminated a “Dear Colleague” letter signed by the CDC Director in July 2005 stating 

that the agency was upgrading the guidance for states to implement name-based HIV 

reporting from “advising” to “recommending.” The letter also indicated that CDC would 

provide technical assistance to states transitioning from code to name-based systems to 

assure that their data could be integrated into the national HIV (non-AIDS and AIDS) 

data system as quickly as possible. 

Additionally, the RWCA Amendments of 2000 called for an Institute of Medicine 

(IOM) study of states’ HIV surveillance systems and their adequacy and reliability for the 

purpose of using such data as the basis for CARE Act formula grant allocation. The IOM 

issued its report, Measuring What Matters, on allocation, planning and quality assessment 

for the RWCA. The IOM did not evaluate the accuracy or effectiveness of code-based 

systems. The IOM Committee noted in the Report that it was beyond its capacity to 

evaluate the HIV case-reporting system of each state and territory. The IOM Committee 

determined that it was ”unclear if name-based reporting is intrinsically superior to codebased reporting for eliminating duplicate reports.” This Report made clear that technical 

problems made it impossible to efficiently include code-based reports. The Committee 

did not have available the final results of the interstate duplication evaluation project 

when it made these recommendations. 

Current Status 

CDC strongly supports the requirement in the RWCA for states to implement HIV 

reporting by 2007. CDC’s policy is to accept HIV infection and AIDS case surveillance 

data only from areas conducting confidential name-based reporting because this reporting 
26

has been shown to routinely achieve high levels of accuracy and reliability. Personal 

identifiers are removed before data are provided to CDC. CDC provides recommended 

security and confidentiality policies and procedures of state and local surveillance 

programs that are consistent with the agency standards for the security of HIV/AIDS 

surveillance data. CDC also requires that recipients of federal funds for HIV/AIDS 

surveillance establish the minimum security standards and include their security policy in 

applications for surveillance funds. 

HIV surveillance that is conducted using coded patient identifiers has not been 

shown to routinely produce equally accurate, timely, or complete data compared to that 

conducted using confidential, name-based surveillance methods. Currently, only 

confidential, name-based HIV reporting, integrated with AIDS surveillance data, can be 

used by states to identify and remove cases that are counted in more than one state before 

they are reported to CDC’s national surveillance database. 

States that have implemented code-based systems consistently inform CDC that 

these systems are more complex, expensive and burdensome than name-based reporting 

systems. Since states have extensive experience with name-based systems for persons 

with HIV who have progressed to AIDS, CDC has accepted that these assertions are 

valid. However, few formal economic evaluations have been conducted. CDC is only 

aware of one such systematic quantitative evaluation comparing the relative costs of 

name-based systems to systems using codes and name-to-code. This evaluation found 

that a name-to-code reporting system was 15 percent more expensive than name-based 

reporting, and reporting based exclusively on codes was 50 percent more expensive than 

name-based reporting. 

 CDC is providing technical assistance to states transitioning from code- to namebased systems to assure that their data can be integrated into the national HIV (non-AIDS 

and AIDS) data system as quickly as possible. CDC continues to provide assistance to 

the seven states that have made the transition to name-based systems since the IOM 

report was published in 2004. As previously noted, as of April 2006, 43 states have 

adopted use of name-based systems of HIV reporting. 

 CDC continues to provide funding and technical assistance to states that use codebased methods for identifying patients in their HIV surveillance system. CDC is 

implementing and disseminating methods for conducting evaluations of the accuracy and 

reliability of reporting systems within states, regardless of reporting method. CDC is 

deploying data management software that integrates functions that will allow areas to use 

standardized methods to evaluate their systems based on recently completed pilot studies. 

In addition, CDC regularly offers technical assistance to areas using code-based systems 

that have not received this software. This assistance includes the software, and relevant 

documentation, that was used in the pilots. 

Closing 

 In summary, CDC is responsible for ensuring the integrity of the national 

HIV/AIDS surveillance system to accurately monitor the epidemic in the United States. 

CDC continues to work closely with all states to help them adopt and implement highquality HIV surveillance systems. Having all states collect HIV information in the same 

manner will ensure that the nation has reliable and valid data to monitor the scope of the 

epidemic; plan for and evaluate prevention, care, and treatment programs; and focus 

those programs on persons most at risk. 

 Thank you again for this opportunity. I will be pleased to answer any questions. 
27

Figure 1. Current Status of HIV Infection Surveillance, April 2006. 

Current Status of HIV Infection Surveillance

April 2006

Name-Based

Name-to-code 

Code-Based

Washington, D.C.

 MR. DEAL. Thank you. Ms. Crosse. 

MS. CROSSE. Mr. Chairman and members of the subcommittee, I am 

pleased to be here today to discuss the Ryan White CARE Act. 

 In fiscal year 2004, over $2 billion in funding was provided through 

the CARE Act, the majority of which was distributed through Title I 

grants to eligible metropolitan areas, EMAs, and Title II grants to States, 

the District of Columbia, and territories. Metropolitan areas qualify as 

EMAs if they have a total of 2,000 reported AIDS cases in the previous 

five years. Titles I and II use formulas to distribute grants according to a 

jurisdiction’s reported count of AIDS cases. 

 My testimony today is based on our February 2006 report on CARE 

Act funding. I will focus on issues related to the formula-based funding 

under Titles I and II that account for about 80 percent of total CARE Act 

funding. We did not examine funding under other smaller provisions of 

the CARE Act, where the distribution under competitive grants may 

currently be different. 

 Specifically, today I will discuss the extent of funding differences 

among CARE Act grantees and how specific CARE Act funding formula 

provisions contribute to these differences, and what distribution 

differences could result from using HIV cases in CARE Act funding 

formulas. 
28

 In brief, multiple provisions in the CARE Act funding formulas 

result in funding not being comparable per AIDS case across grantees. 

First, the CARE Act uses measures of AIDS cases that do not accurately 

reflect the number of persons living with AIDS. For example, the 

statutory funding formulas require the use of cumulative AIDS case 

counts, which could include deceased cases. 

 Second, CARE Act provisions related to metropolitan areas result in 

variability of the amount of funding per AIDS case among grantees. For 

example, AIDS cases within EMAs are counted once for determining 

funding under Title I of the CARE Act, and again under Title II for 

determining funding for the States and territories in which those EMAs 

are located. As a result, States with EMAs receive more total funding 

per AIDS case than States without EMAs. 

 Third, CARE Act hold harmless provisions under Titles I and II and 

the grandfather clause for EMAs under Title I sustain funding and 

eligibility of CARE Act grantees on the basis of a previous year’s 

measurements of the number of AIDS cases in these jurisdictions. For 

example, the CARE Act Title I hold harmless provision results in one 

EMA continuing to have deceased AIDS cases factored into its allocation 

because its hold harmless funding dates back to the mid-1990s when 

formula funding was based on a count of AIDS cases from the beginning 

of the epidemic. 

 The most recent reauthorization of the CARE Act in 2000 specified 

that HIV cases should be used in funding formulas no later than 2007. If 

HIV case counts had been incorporated in allocating fiscal year 2004 

CARE Act grants, funding would have shifted among jurisdictions. 

Grantees in the South and the Midwest generally would have received 

more funding if HIV cases were used in the funding formulas, but there 

would have been grantees with increased funding and grantees with 

decreased funding in every region of the country. 

 Although CARE Act grantees have established HIV case reporting 

systems, differences between these systems in their maturity and 

reporting methods, for instance, would have affected the distribution of 

CARE Act funds based on estimated living AIDS cases and HIV case 

counts. Grantees with more mature HIV reporting systems would tend to 

receive more funds. Further, CDC has not accepted data for use in the 

formulas from systems that use code-based rather than name-based HIV 

reporting, and as we have just heard from Dr. Fenton, there are a number 

of jurisdictions still using code-based systems. 

 We reported in February, 2006, that if Congress wishes CARE Act 

funding to more closely reflect the distribution of the current epidemic, it 

should consider taking actions that lead to more comparable funding per 

case by revising the funding formulas. In accordance with achieving 
29

more comparable funding per case, we raised a number of matters for 

consideration when Congress reviews the CARE Act. 

 Mr. Chairman, this completes my prepared statement. I would be 

happy to respond to any questions you or other members of the 

subcommittee may have. Thank you. 

 [The prepared statement of Marcia Crosse follows:] 

PREPARED STATEMENT OF MARCIA CROSSE, DIRECTOR, HEALTH CARE, U.S. GENERAL 

ACCOUNTABILITY OFFICE
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 MR. DEAL. Well, thank you. Very interesting comments from all of 

you. There appear to be some issues that will probably divide our 

members of our subcommittee. Not necessarily along political lines, but 

maybe along geographical lines. So let me just jump in to some of those. 

 I assume, Ms. Crosse, that what you are recommending is that we go 

to a more equitable counting system that would eliminate some of the 

things that you have talked about, such as counting deceased cases in the 

cumulative totals. Would that perhaps equalize more appropriately in 

States that do not have DMAs? As I understand it, that gets you a double 
54

count on your statistical numbers. Am I generally correct on what you 

are recommending? 

 MS. CROSSE. Yes, Mr. Chairman, in general, we are suggesting that 

more appropriate recognition of the current epidemic’s pattern should be 

considered in the distribution of funds and that some of the current 

provisions do not reflect where the current epidemic is spread across the 

country, and that while there needs to be consideration given to how to 

balance the needs of different jurisdictions, that jurisdictions with more 

recent spread of the disease currently receive substantially less funding 

per case than some of the jurisdictions that were the early focus of the 

disease. 

 MR. DEAL. Dr. Fenton, in that regard, is there any shortfall or any 

legitimate criticism from using the CDC surveillance data for making 

these kinds of determinations? What criticism, if any, would there be 

from using your surveillance data? 

 DR. FENTON. Thank you very much. The surveillance data that we 

have at the Centers for Disease Control and Prevention is specifically 

designed to assist us in tracking the evolution of the HIV and AIDS 

epidemic in the United States. This is a dynamic epidemic, and certainly 

as has been mentioned by Ms. Crosse, more recent changes in the 

epidemic have indicated that individuals of minority status and more 

women are affected by HIV. Therefore, it is very difficult for us to 

specifically state that our surveillance systems are going to be 

appropriate necessarily for informing formulas, per se, for the funding 

formulas. 

 MR. DEAL. Okay. Dr. Duke, very quickly, is there any concern on 

your part about using the CDC surveillance data as a basis for 

determining allocation of funding? 

 DR. DUKE. One of the principles that we put forth in looking at 

opportunities to serve the neediest first is the opportunity to develop a 

severity of need index, which would be a nationwide quantitative 

approach, which would allow us to inform our decisions about where the 

need is greatest in a way that we don’t have now. So the severity of need 

index I think is an important element of getting to serving the neediest 

first. 

 MR. DEAL. Thank you. Mr. Waxman. I was just going to go down 

the line. 

 MR. WAXMAN. Okay. Thank you very much, Mr. Chairman. 

 Dr. Duke, would you agree that in this reauthorization, although we 

certainly need to address the demands brought about by more recent 

changes in the epidemic, it is critical that we not destabilize the currently 

existing systems of care by shifting funds away from those systems? 
55

 DR. DUKE. I think that we have been very fortunate in this country 

that the Act has provided for the development of systems of care that are 

very important. One of the things that I think is critical in this 

reauthorization is that we all need to work together to recognize the need 

for both stability on the one hand, but also the need for equity for the 

patients on the other. I believe that in a deliberative process working 

together we can find that balance. 

 MR. WAXMAN. The Administration has proposed the establishment 

of a new set of core medical services. Under this proposal, grantees 

would be required to spend 75 percent of all their Ryan White funds on 

these core services. It has been difficult for stakeholders and Members 

of Congress to react to this principle with anything other than concern 

because the Administration has failed to provide any guidance on one, 

what exactly a core medical service might be, and two, why we might 

need a new definition under the Act. The Administration suggested only 

that a core medical service include basic primary medical care and 

medication needs of individuals with HIV/AIDS. It is a service that is 

clearly life-prolonging and essential to maintaining physical and mental 

health. 

 Based on the Administration’s limited statements, I think we can 

safely assume that certain medical services would be included in the 

definition of core medical services. For instance, it is clear ADAP 

medications would be covered. It is less clear where the Administration 

stands on numerous services that we could all agree are life-prolonging 

and essential to maintaining physical and mental health. For example, 

would you agree that the following services that are undoubtedly lifeprolonging and essential for many individuals should be considered core 

medical services: medical nutritional services, substance abuse treatment 

services, mental health services, and case management services? 

 DR. DUKE. As we look at the definitions of core medical services, 

we are aware that there are many definitions when you look at different 

articles across the list of publications. But you do find that there are 

certain common elements that arise in most lists. For example, you do 

find case management in most lists, you find support for substance abuse 

and mental health in most lists. What we are looking for as we work 

together to define this concept of core medical services is to try to find 

where the best balance is, and that is why-- 

 MR. WAXMAN. Well, let me ask you specifically, would the concept 

of core medical services include medical nutritional services? Yes or no. 

 DR. DUKE. I, at this point, don’t know the final answer on that. I 

think that is what we are in the process of deliberating. 

 MR. WAXMAN. How about substance abuse treatment services? 
56

 DR. DUKE. Many of the definitions include substance abuse and 

mental health services along with case management and medications and 

so forth. That is, I think, the process of deliberation that we are trying to 

come to a conclusion on that definition. 

 MR. WAXMAN. Thank you. 

 Mr. Chairman, my time is expired. I will have more on a second 

round. 

 MR. DEAL. I thank the gentleman. Dr. Burgess. 

 MR. BURGESS. Thank you, Mr. Chairman. 

 Dr. Fenton, if I could ask you, what would you estimate to be the 

number of people who are infected with HIV who are unaware of that 

infection? 

 DR. FENTON. It is currently estimated that there are between a 

million to 1.2 million individuals living with HIV in the United States, 

and approximately a quarter of these individuals, between 250,000 to 

312,000 who are unaware of their HIV status. 

 MR. BURGESS. That obviously underscores the importance of 

testing. 

 Do you have any thoughts on the availability of a rapid test for HIV? 

 DR. FENTON. Yes, we are very much aware that rapid tests are 

actually available for HIV testing and we are, in fact, delighted with the 

President’s initiative in the next financial year, which is seeking to invest 

additional funding to promote rapid testing in the United States. In fact, 

there are plans for an investment of $93 million into promoting rapid 

testing for HIV, with the explicit objective of ensuring that more 

individuals are aware of their HIV status. In this initiative, we are 

looking at promoting rapid testing, not only in community settings, but 

also in jails, as well as among injecting drug users. 

 MR. BURGESS. So it is the CDC’s opinion that this would be a 

positive effect on controlling the spread of disease? 

 DR. FENTON. Absolutely. We estimate that a substantial portion of 

new HIV diagnoses are actually transmitted by individuals who are 

unaware of their HIV status. We also know from published literature 

that individuals who are aware of their HIV status are more likely to 

adopt safer sexual behaviors, thereby reducing the risk of HIV 

transmission. Therefore, any efforts to increase HIV diagnosis among 

the undiagnosed are welcomed. 

 MR. BURGESS. You mentioned some of them, but do you think there 

is a role for this rapid testing in settings such as emergency rooms, labor 

and delivery rooms, maternity clinics? 

 DR. FENTON. Absolutely. I think that all medical settings that we 

can avail ourselves of promoting HIV testing should be taken advantage 

of, and indeed, CDC is proposing new recommendations to advance HIV 
57

testing in both clinical as well as non-clinical settings. Later this year, 

we should be publishing revised recommendations for HIV testing in 

clinical settings in which we actively encourage a range of clinical 

settings to offer HIV testing. 

 MR. BURGESS. How does the testing itself fit into the overall Ryan 

White Act as you understand it? 

 DR. FENTON. To the best of my knowledge, I am not able to 

comment on the direct link between testing and the Ryan White CARE 

Act; however, clearly any initiative to increase HIV testing will have an 

impact on the number of individuals who are diagnosed with HIV and 

subsequent individuals who will be seeking care for their HIV disease. 

 MR. BURGESS. Thank you, Mr. Chairman. My time has expired. 

Are we going to have a second round? 

 MR. DEAL. If time permits, yes we probably will have a second 

round. 

 Mr. Pallone, you are recognized. 

 MR. PALLONE. Mr. Chairman, as I mentioned in my opening 

statement, I am very concerned about some of the recommendations that 

the Administration has proposed for reauthorization of the CARE Act, 

and specifically of concern is the recommendation of eliminating the 

double counting. My concern comes from the fact that the 

Administration has been very vague in talking about their principles and 

has not really provided any level of detail about their recommendations, 

so that is why I am glad that Dr. Duke is here today. 

 Correct me if I am wrong, but is the Administration proposing to 

eliminate the double counting in Ryan White by allocating all Title II 

base funds solely on the estimated living AIDS cases in the State that are 

located outside of Title I EMAs? That is my basic question, because if 

that is true, you know, I would like you to follow up with the impact that 

that proposal would have on States that are likely to have the highest 

prevalence of HIV/AIDS. And if you want to, I could explain what I am 

concerned about with regard to New Jersey if you like, Dr. Duke. 

 DR. DUKE. Thank you. That would be helpful. 

 MR. PALLONE. Well, in New Jersey, we have five EMAs according 

to the GAO report that was put out several months ago. Nearly 85 

percent of estimated living AIDS cases in New Jersey reside in an EMA. 

Now, I have a chart that was developed by a group of our State’s AIDS 

directors, and they say that New Jersey would stand to lose 24 percent of 

its Title II based grant. It could probably even be more than that. So my 

concern is the Administration’s intention. Are they going to, because of 

this double counting elimination, would they eliminate 24 percent of the 

funding from New Jersey which is fifth in terms of reported HIV/AIDS 

cases. 
58

 DR. DUKE. As a native of New Jersey, I am aware of the superb job 

that New Jersey has done. 

 I think that another way of addressing this is to look at the approach 

that we have taken to try and address the neediest first and to ensure that 

we provide lifesaving and life-extending services. And that is linked to 

this concept of a severity of need index to replace the kind of approach 

we have taken in allocating funds in Titles I and II. The severity of need 

index that would be geared toward the provision of core medical services 

would provide a nationwide quantitative approach to the allocation of 

funds, and would then allow us to allocate the funds in both Titles I and 

II in a way that I think would be fair to the patients in the States across 

the Nation. I think that is what we are trying to do is to work with the 

Congress to find that way of providing a focus on the patients but gets 

the funding to those patients, wherever they are. 

 So I don’t see it in terms of punishing one jurisdiction or favoring a 

jurisdiction-- 

 MR. PALLONE. Well, let me ask you this. Have you estimated the 

impact on States with EMAs? In other words, I mean I have no 

information. No information has been shared with Congress about that. 

I mean, could you provide that kind of analysis to us about what this 

eliminating double counting, what the impact would be on States with 

EMAs? 

 DR. DUKE. Well, at this point to develop the severity of need index 

would be our first order of business, which would then be crucial to that 

concept. We aren’t there yet in the sense of developing a nationwide 

quantitative approach to severity of need. So we are in a transition phase 

from the existing approach to the really complex formulas in Titles I and 

II and the complex interactions that Ms. Crosse outlined in the GAO 

report. It is an incredibly complex set of interactions that have happened 

as a result of the way that the Act has grown up. 

 MR. PALLONE. But how are you proposing to eliminate the double 

counting? I mean, how are you proposing to do that? 

 DR. DUKE. Well, one of the ways would be first to get to the 

severity of needs index, and then to work on the idea that we would 

provide that as the crucial element which would be the key to awarding 

funds in Title I and also in Title II. 

 MR. PALLONE. I just want you to understand, I mean, I am just 

concerned about the impact on States that have the highest prevalence, 

and it is still not clear to me, you know, what this is all going to mean. 

 DR. DUKE. My sense is that when you have high prevalence and 

high incidence, the need to get to a standard that recognizes both the 

incidence in the sense of new cases, plus the existing cases is where we 

need to go, while we are also in the process recognizing poverty and 
59

other elements to produce this--an approach that allows us to recognize 

cases regardless of where they are. 

 MR. PALLONE. Thank you. 

 MR. DEAL. Ms. Bono, you are recognized for questions. 

 MS. BONO. Thank you, Mr. Chairman. I am happy to follow after 

my colleague, Mr. Pallone, because I think we are on the same line of 

questioning, and for me, that means some confusion already as to the 

funding formulas. 

 Double counting, is that the same thing that we are talking about 

with 80/20 provision, or is this entirely separate? 

 DR. DUKE. The double counting, as Ms. Crosse indicated in her 

opening statement, gets at the issue of States that have EMAs get funding 

from the amount of money that is provided in Title I. So that $604 

million gets allocated to the existing 51 EMAs. Then in Title II, the 

allocation to the States then is allocated to the States based on the 80/20. 

 MS. BONO. Okay. So based on the GAO report on Title I and II 

funds, there was in year 14 an overall allocation of $4,783 per estimated 

living AIDS case with a range from $3,338 to on the high end, $7,275 

per estimated living AIDS case. My staff has taken a State and projected 

the impact of eliminating the 80/20 provision, and based upon that data 

given in the GAO report for Title I and Title II, eliminating that 

provision actually increases the disparities in funding. The overall 

allocation remains at $4,783 per estimated living AIDS case or ELC, but 

the range increases dramatically from a minimum of $3,511 to a 

maximum of $13,780. Is my staff the only one who is getting this sort of 

math? 

 DR. DUKE. If I might, I could defer that question to Ms. Crosse who 

has that report with her. 

 MS. BONO. Okay, thank you. 

 DR. DUKE. Thank you. 

 MS. CROSSE. I am afraid we don’t have the particulars of the kind of 

analysis that you are looking at. When we did our analysis, we examined 

the funding that was provided to those States that do have EMAs. We 

did not do an analysis that eliminated the current provisions of the CARE 

Act to examine what occurred if any double counting was completely 

eliminated. That was not part of the analysis that we carried out. We 

examined, for example, the States that had relatively comparable 

numbers of cases could receive, under the current provisions, quite 

different funding levels if they had an EMA or if they did not. So for 

example, Connecticut and South Carolina that have relatively equal 

numbers of cases used in the formulas do not receive equal levels of 

funding, because Connecticut has EMAs and South Carolina does not. 
60

But we did not carry out an examination of what would happen if double 

counting were eliminated. 

 MS. BONO. But you are proposing that? 

 MS. CROSSE. We are suggesting that the Congress needs to review 

the impact of that double counting as it revises the CARE Act. We did 

not specifically recommend that it be totally eliminated. 

 MS. BONO. Okay. So we definitely have our battles ahead of us 

from California. 

 Turning really fast to ADAP, and Dr. Duke, again, how many 

ADAPs currently have waiting lists for drugs? 

 DR. DUKE. The last report I saw was toward the end of March, and I 

believe it was 13 States. 

 MS. BONO. And do those waiting lists represent all individuals not 

being treated? 

 DR. DUKE. They represent the individuals who have not been able to 

access the formulary that the State provides. 

 MS. BONO. So is the President in his principle for development of a 

Federal list of core medication, does that address the ADAP waiting list 

issue? 

 DR. DUKE. There are several features that address the waiting list 

issue. One is in the current ‘07 budget. There is a $70 million request 

for an increase that would address the waiting list and would address the 

possibility that more testing would bring more people into care, and 

therefore the $70 million is designed to help address those new cases as 

well. 

 MS. BONO. Terrific. Thank you, Mr. Chairman. 

 MR. DEAL. Thank you. Ms. Capps, you are recognized for 

questions. 

 MS. CAPPS. Thank you, Mr. Chairman. 

 In my opening remarks, in mentioning those of us who are from 

California, Mr. Waxman, Ms. Eshoo, and myself, I hadn’t seen Ms. Bono 

come in, and I think it is very important that you recognize that there is 

tremendous bipartisan interest and support for the reauthorization of the 

CARE Act. And to underscore the fact our staff has been looking at 

numbers in a bipartisan way, we estimate that if this change in 

numbering should go into effect, and you did put the burden, and it is our 

responsibility on us that 62 percent of reduced funds would come to 

California. That is a cut and is a huge change in the kind of support that 

we have come to depend upon from the Ryan Act. 

 I want to turn my time to you, Dr. Fenton. According to current law, 

by October 1, 2006, all data accepted by CDC has to be accurate and 

reliable. CDC has stated that an accurate and reliable system is a namebased data collection; however, some jurisdictions like California that do 
61

not have a mature name-based system will be caught here. They may 

face the loss of Ryan White CARE Act funds for their HIV and AIDS 

communities. Is the CDC going to work with State AIDS offices to 

develop a proxy for States to submit HIV/AIDS counts so that their Ryan 

White programs are not drastically hindered? 

 DR. FENTON. Thank you very much. 

 May I just begin by saying that we are delighted and indeed very, 

very pleased that California has, in fact, shifted and now has begun 

progress towards name-based reporting. And yes, your concerns are 

absolutely on target. 

 One of the key issues that CDC has been doing is working with 

States which have recently transitioned to ensure that this transition 

process to name-based reporting goes as quickly and as efficiently as 

possible. 

 MS. CAPPS. Let me get real specific. Have you had discussions with 

the almost 20 State AIDS offices in this situation to discuss possible 

solutions? Can I go to them and see that they have a plan that you are 

working out with them for this interim basis? 

 DR. FENTON. I have been reassured that yes, you can. All these 

States have a comprehensive transition plan. 

 MS. CAPPS. Thank you. 

 If the current formula uses estimated rather than actual living AIDS 

cases, according to discussions with the California State Office of AIDS, 

using estimated cases undercounts my home State’s true disease burden 

by approximately 30 percent. Has CDC considered using actual living 

AIDS cases in a proxy formula? 

 DR. FENTON. Unfortunately, it is the best data that we have using 

reported HIV cases. It is not within our purview to look at formulary for 

proxy cases. 

 MS. CAPPS. So then if you are going to continue using this system, 

we will estimate that there are 30 percent more cases actually in 

California than you are counting in this way. Is there some other proxy 

system that you would be willing to consider in the goal of getting an 

accurate count? 

 DR. FENTON. I am once again very guided by the law on this, and 

the regulations which have been stated regarding how the funding 

formulas are actually enacted. I would like to reiterate that we are 

committed to working with California to ensure that the transition to 

name-based HIV reporting is done as quickly and as efficiently as 

possible. 

 MS. CAPPS. So if there is no law, then does that mean that you are 

looking to us for guidance in this interim state, to develop a proxy 

counting method that we can use until we have the mature name-based 
62

system in place, which we hope we can do, that will accurately reflect 

the actual number of people living with HIV and AIDS in our State? 

 I have 20 seconds left, and Ms. Crosse, I just wanted to ask, for 

example, California, which is ranked 18th on the list of RWCA 

allocations per ELC, receives less money per ELC than States like South 

Dakota, Alaska, Montana, and Wyoming. Have you completed an 

analysis of funding in all parts of the Act that provide core medical 

services to people with AIDS? 

 MS. CROSSE. Ma’am, our review focused on the Title I and the Title 

II funding. The ranking that you referred to, I just became aware of 

yesterday. Those States, the top of the list that you mentioned, are those 

that qualified for minimum grant funding to be able to mount any sort of 

a program at all. So for example, Montana receives a minimum grant 

amount of $500,000 even though it has an estimated living AIDS cases 

of fewer than 150. And so its relative ranking in the per case funding is 

quite high because it has that minimum grant amount provided to it. We 

have not looked at the non-formula based funding amounts that are 

awarded through competitive grants. Some of those funding amounts are 

not for services to HIV/AIDS patients and their families. They are for 

research or for training of healthcare workers, which are very important 

functions, but are not part of the services that are provided to patients. 

Some of them are for services, some of the Title III and Title IV funds, 

for example, but those funds are on the basis of competitive grants, not to 

States and jurisdictions to control the distribution, but are based on 

successful grant writing by different entities throughout the country. 

 MS. CAPPS. Thank you. I hope we will conclude all of this data as 

we look at our reauthorization. Thank you. 

 MR. DEAL. Mr. Pitts, you are recognized for questions. 

 MR. PITTS. Thank you, Mr. Chairman. 

 Dr. Duke, are there any caps on administrative costs for grantees 

under current law? 

 DR. DUKE. Yes, sir, there are. There are a variety of caps as you go 

across the Titles, there are different caps in Titles I, II, and III. There is 

no cap in Title IV, and those vary from generally 5 percent to 15 percent. 

 MR. PITTS. You testified that States will be encouraged to adopt 

prevention strategies upon receipt of their Ryan White allocations. Do 

you have the current authority to require States to demonstrate this as a 

condition of their grant approval? 

 DR. DUKE. We encourage prevention as a matter of the work we do 

today. We believe that part of our role is to ensure that we take steps to 

limit the spread of the epidemic. So we take prevention steps now, we 

are very consistent with our sister agency’s prevention initiative, and so 

prevention is part of what we do now. What we hope to accomplish in 
63

the future is more use of rapid testing to identify those persons who do 

not know their status now or who know their status and who aren’t in 

care to get them into care, not only for their own longevity and quality of 

life, but also to prevent the spread of disease in the community. 

 MR. PITTS. Isn’t it true that while there are eligibility requirements 

to receive EMA funding, 29 of the 51 EMAs do not actually meet this 

criteria today? 

 DR. DUKE. At this point, 29 of the 51 do not. 

 MR. PITTS. How do the Title IV grantees receive funds from HRSA, 

and how is that different from other grantees under the other Titles? 

 DR. DUKE. Titles III and IV are grants to community-based 

organizations, and they are competitive grants, that is to say, we provide 

guidance about what we are hoping to do in prevention, early 

intervention, capacity building, or services to families of those with 

AIDS, and we provide that guidance as a way of opening competition to 

serve the needs that we identify in that guidance, those competitive 

applications come in to us. They are reviewed by an objective review 

committee, and those funds then are awarded for services to the 

community by community groups. 

 MR. PITTS. Ms. Crosse, the hold harmless provisions were added in 

the 1996 reauthorization of the CARE Act, and you testified that they 

were added to accommodate the large shifts of funding from jurisdictions 

with a longer history of the disease than other jurisdictions that would 

have occurred. Can you tell us which EMAs and States would have 

otherwise experienced a large shift of funds from their jurisdictions at 

that time? 

 MS. CROSSE. Yes, sir. In 1996, the way in which cases were 

counted was changed from a cumulative count from the beginning of the 

epidemic to an estimated living cases, and that had the potential to 

impact jurisdictions. At that time, only one jurisdiction, San Francisco, 

was held harmless for its funding from under the Title I provision. At 

the current time, there are larger number of jurisdictions that are 

protected by the hold harmless provision, however, the bulk of that 

funding is still for San Francisco. Kansas City is the next largest 

jurisdiction EMA that receives hold harmless funding. But about 94 

percent of the hold harmless funding goes to San Francisco under Title I. 

 MR. PITTS. And you stated that HHS generally agreed with GAO’s 

identification of issues in the funding formulas. Did HHS disagree with 

any issues? 

 MS. CROSSE. No, sir, they did not disagree with any of the matters 

that we raised for consideration by the Congress as it considers the 

reauthorization of Ryan White. 

 MR. PITTS. Thank you, Mr. Chairman. 
64

 MR. DEAL. Thank you. Mr. Towns, you are recognized for 

questions. 

 MR. TOWNS. Thank you very much, Mr. Chairman. 

 Let me just also join some of my colleagues who have indicated 

about the possible loss. New York State would probably lose 60 percent 

of its funding, probably a little more than $23 million, which is 

something that we are extremely concerned about. I just want to make 

that point. But also again, Mr. Chairman, I really think it is important 

that we have this kind of discussion to be able to move forward. 

 Let me ask you, Dr. Duke. I notice that the Secretary has the ability 

to change five percent of the funding, and of course, at any point in time. 

What would precipitate this action, changing from one category to 

another? What would precipitate it? 

 DR. DUKE. Sir, the current structure of the Act, because it is based 

on a series of formulas, can produce some inflexibilities that make 

administration of the Act by the requirements of the law go where 

perhaps the Congress didn’t intend it to go in the sense that because of 

the various provisions, some States can’t actually use the money that we 

provide, either because they can’t make the match or because their 

caseload is significantly lower. But we have at this point no authority to 

take that money and reallocate it to other jurisdictions that might need 

that money, so indeed, it returns to the treasury. 

 MR. TOWNS. I am not quite sure. If you discovered that there was a 

crisis in a given area, could you do it, for instance, that all of a sudden 

you discover that something is going on that you had no knowledge of, 

then could you, in turn, allocate it for that? 

 DR. DUKE. No, sir. The requirements of the law require us to 

allocate money based on the formulas, and so we have some 

inflexibilities which we are attempting to, in our principles and also in 

the budget request, to get the kind of flexibility that would allow us to 

respond to some unforeseen situation. The example I might use is a few 

years ago, we became aware of the rise of waiting lists in States, and the 

President announced a desire to meet those emergencies with the waiting 

lists, and that required a very complex set of reprogrammings and 

Congressional action, and took quite some time to do. And so that really 

was one of the things that triggered us to think that perhaps we needed to 

build in some flexibilities or request some flexibilities in this 

reauthorization that might allow us to respond to situations in the future. 

 MR. TOWNS. What about supplemental grants? 

 DR. DUKE. The supplemental grants operate on the basis of a 

formula also in Title II, so we don’t, again, have the flexibility to move 

those monies to a particular area of new concern or to a crisis. We don’t 
65

have that flexibility. The law requires us to allocate funds based on the 

formula. 

 MR. TOWNS. Would you like to have that flexibility? 

 DR. DUKE. Yes, sir, we would. We would like to have flexibility 

that would allow us to respond, and that is the request to allow the 

Secretary to shift funds across the Titles, five percent of the funds from 

any one Title to any other Title to respond to emergencies. 

 MR. TOWNS. Thank you. 

 Ms. Crosse, why hasn’t there been a full GAO report on Ryan White 

including Titles III, IV, and Part F? 

 MS. CROSSE. We were guided by the requests that we received from 

Members of Congress who specifically asked for us to review the 

funding formulas in Title I and Title II, but in addition, that accounts for 

the bulk of the funding. That is the funding that is linked to specific 

counts of AIDS cases. The funding under other Titles, while it can be 

based on that in a grant application, is not linked to the prevalence of the 

disease in a particular community, but rather is based on the types of 

services that the grantee is proposing that they would provide and their 

successful competitive grant application. So it is only the Title I and 

Title II funding that automatically goes to jurisdictions based on the 

prevalence of the disease as encoded in those formulas. So we felt and 

were requested specifically to look at those components that account for 

about 80 percent of the Ryan White monies. 

 MR. TOWNS. All right, thank you. 

 Dr. Duke again, we know the statistics demonstrate that racial 

minorities are more likely to be victims of the AIDS epidemic. How 

effective has the minority AIDS initiative been in increasing access to 

prevention and care for racial minorities with HIV? 

 DR. DUKE. The opportunity to use those funds in a targeted way has 

been very useful to us. If we look at the populations we serve, we note 

that we serve about two-thirds of our patients are minorities. A third of 

them are women. And so we have been able to use those funds very 

well, and we appreciate having those funds. 

 MR. TOWNS. Do you think it needs to be strengthened? 

 DR. DUKE. We have been very pleased with the allocations we have. 

 MR. TOWNS. So you don’t think it needs to be strengthened? 

 DR. DUKE. We believe they are very strong and we are grateful for 

them. We recognize the wisdom of the Congress in the allocation of 

those funds. 

 MR. TOWNS. Let me put it this way. We have a problem, as you 

know. What can we do to assist you in bringing about a solution to this 

problem? 
66

 DR. DUKE. We believe that the principles we proposed for the 

reauthorization will help us address those problems because we believe 

that the changes we propose will allow us to target our resources more to 

where the AIDS epidemic has gone, and therefore, we can address the 

needs of minority populations all across the country. 

 MR. TOWNS. Let me--I gather this morning--I mean, this is sort of a 

dialogue we had in here this morning. There are some people that are 

dying every day. I think we need to do everything that we can to prevent 

that, and that is the reason why we don’t want to have a very open 

discussion here, because I think that we can do a lot better than what we 

are doing, and in order to get there, we have to have an open discussion 

about it and you know, I am not challenging you in any kind of way. I 

am on your team, and I want you to know that, but I think you have to be 

open and honest with each other in order to get to where we need to go, 

and that is the point I am going to make, Mr. Chairman. 

 DR. DUKE. Bless your heart. I couldn’t agree with you more, sir. 

That is what we hope to have is a dialogue with you so that we come to a 

reauthorization that we know we all want that will advance the needs of 

our patients, and I appreciate being here to work with you and to have 

that dialogue. 

 MR. DEAL. The gentleman’s time has expired. 

 Ms. Eshoo, you are recognized for questions. 

 MS. ESHOO. Thank you, Mr. Chairman, and thank you to the 

witnesses for their responses. 

 I want to walk through this--maybe this is a Ryan White CARE Act 

101. I think that when we go through these hearings, it is in many ways 

a refresher course for the members as well. 

 When you go through the Titles, it is important to remember that 

Titles I and II deal with the EMAs, the eligible metropolitan areas. Titles 

III and IV pertain to States that don’t have the EMAs. They work off of, 

as I understand it, the ELCs, the estimated living cases. Now, the GAO 

report, in my view, looked narrowly at the funding mechanisms for only 

Title I and II, which seems to be the heart of the discussion here and the 

responses Members have made, both in terms of their opening statements 

and their lines of questioning. The GAO report did not consider funding 

for Titles III and IV, so they have left out much of the picture. I mean, it 

was targeted, it was narrow, and it is interesting what they have done, but 

I think it is skewed because when you look at what is left out, the GAO 

looked at, obviously, the major cities. And that is where the heavy 

caseload is. That is where most of the AIDS cases are. 

 Now, as far as I am concerned, I don’t want any area of the country 

left out. I mean, whether someone lives in South Dakota or in Georgia or 

in San Francisco, we have a collective obligation to take care of our 
67

people. But it is very interesting to look at the ranking in descending 

order by total award per estimated living AIDS case and the monies that 

flow. Those States that don’t have, again, the EMAs but are funded 

through the ELCs, at the top of the list is South Dakota. Mr. Chairman, 

your State, Georgia, the total award is $66,540,052. The minimum 

award, $11,226. 

 So I think what I would like to do is to enter this report by the 

Communities Advocating Emergency AIDS Relief into the record, 

because this repot tells the other half of the story. In fact, if we are only 

going to consider Titles I and II and dismantle funding that is contained 

in that, which I think picks on the larger areas in the country and really 

causes the upset that several Members from both sides of the aisle have 

spoken about, we really have to take a look at and appreciate what other 

States are getting through another set of dollars that flow through what 

are known as the ELCs, and they are not insignificant funds, which I am 

pleased to highlight. 

 I don’t think I have a question. I think it is important to get this into 

the record, and now, for members that represent these States, South 

Dakota, Alaska, Montana, these are the ones that are at the top. South 

Dakota, Alaska, Montana, Idaho, Wyoming, Vermont, Massachusetts, 

North Dakota, Colorado, Missouri, Pennsylvania, Washington, Maine, 

Rhode Island, Illinois, New Mexico, California, Iowa, Minnesota, I 

mean, these are the States that are, when you look at the funding, it really 

tells the other part of the story. So my point is, why are we picking on 

the larger cities that have the kind of funding that we have examined here 

in Titles I and II, with the suggestion that it is needed because other 

places in the country are really suffering as a result of the funding that 

they get? It is not the story, it is not the complete picture. 

 We need to enlarge on this and I think broaden the discussion, Mr. 

Chairman. We need to be talking about funding of the Titles across the 

board. I, again, appreciate the fact of what GAO did, but understand that 

what GAO did, it was directed by some Members of Congress to only 

examine those two Titles and the funding that flows from them. So it is 

not the complete picture. And I think that if we only limit ourselves to 

that, that we are going to be doing damage. We are going to do severe 

damage, and I don’t think that that is the intention of the committee at 

all. 

 Now, if anyone on the panel wants to comment on what I have just 

said, I would welcome it, but you have your constraints from where you 

come from. I can tell by the answers. And I appreciate your 

professionalism, but so if anybody wants to weigh in on this, do, but I 

think all the members of the committee need to broaden their thinking on 

this thing. 
68

 MS. CROSSE. Ma’am, I will respond. We examined Title I, which is 

all of the funding for the eligible metropolitan areas-- 

 MS. ESHOO. Right. 

 MS. CROSSE. --Title II, which is the funding for the States and 

territories. 

 MS. ESHOO. Right. 

 MS. CROSSE. But those are the funds that are distributed through the 

formulas using the ELCs. All of the funding that is distributed on the 

basis of ELCs is distributed under Titles I and II that we examined. 

 MS. ESHOO. I understand that. 

 MS. CROSSE. Titles III, IV, and other special provisions do not use 

case-based distributions of funding. 

 MS. ESHOO. Yes, but I want to reclaim my time. My point here is 

that there seems to be, at least in my view, it may just be me, that there is 

a suggestion here that if you don’t come under these funding formulas 

and if there is a grab, so to speak, by larger cities in other areas, that 

other places in our country are suffering from it. 

 When you look at the funding here, that is not the case. There is 

excellent, which I am pleased to point out, funding for these other areas. 

So, this I think goes directly to this whole issue of the principles and how 

we need to shift the money around. I don’t think we do, because it seems 

to me that there is excellent funding for other States, and the Chairman’s 

State is kind of right in the middle here, but boy, when they get these 

grants, it is taking good care of people. 

 So, Mr. Chairman, I think we need to talk about the other Titles as 

well, and I would like to ask unanimous consent that this report be placed 

in the record. 

 MR. DEAL. Without objection. 

 [The information follows:] 
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MR. DEAL. The gentlelady’s time has expired. 

 Mr. Shimkus is recognized for questions. 

 MR. SHIMKUS. Thank you, Mr. Chairman. 

 Ms. Crosse, can you just go over those Titles one more time? You 

were unable to finish and I would like to hear the rest. Just start with 

Title I again. 

 MS. CROSSE. Yes. Title I is the grants to the eligible metropolitan 

areas, the cities that have had a cumulative AIDS case count of over 
73

2,000 in the past five years or who are grandfathered in because at one 

time they met the criteria. Title II is grants to the States and territories. 

Those include the funds for State programs for areas outside of the 

eligible metropolitan areas, and for the AIDS Drug Assistance Programs. 

Title III is a competitive grant program, early intervention services, 

capacity, development, and planning grants, and those go to primary care 

providers, including health centers, city and county health departments, 

and outpatient medical centers. Title IV is services for women, infants, 

children, youth, and their affected family members. That also is a 

competitive grant process. Those grants are awarded to healthcare 

facilities, public health agencies, and community-based organizations 

that serve the target populations. In addition, there are funds that I 

believe are included in the figures that Representative Eshoo refers to 

under special projects of national significance that are awarded 

competitively to university and community clinics, evaluation centers, 

local and State health departments, community-based organizations, and 

nonprofit agencies to carry out the development of innovative models of 

delivery of care. And there are 15 national and regional centers for 

AIDS education and training of healthcare workers; those funds are also 

included in her accounting. That is to educate healthcare workers on 

how best to treat patients with HIV and AIDS. And there are dental 

programs that are provided, both for education of dental care providers, 

and for the provision of services to HIV and AIDS patients. 

 MR. SHIMKUS. And we just had the dentists here in town this week 

talking about some of those provisions, and I appreciate that. 

 I am going to turn to Dr. Duke, but before I do that, I want to relate a 

story. I have been focusing a lot this month on Medicare D issues, and 

there are 19 days left for signup, but I have an HIV constituent who is 

now saving $15,000 a year by being able to access the prescription drug 

benefit. It has changed his ability to survive in the world today and he is 

very grateful. That came on the heels of--and an elderly lady who now, 

for the first time in years, is able to afford automobile insurance and she 

is back driving where she had to stop paying automobile insurance 

because of her prescription drug costs. So I know it is not your area, but 

it does talk about the ability to access prescription drugs, and not a 

perfect situation, but those people are accessing it. And it is just 

important for me to use the bully pulpit at this time to encourage people 

to make sure that they sign up on time to access this if they can. 

 Dr. Duke, I have got a question. I represent southern Illinois, a large 

rural district, but I actually border three States. I border the State of 

Missouri, I border the State of Indiana, I border the State of Kentucky. 

And on the AIDS Drug Assistance Program, how many AIDS Drug 

Assistance Programs currently have waiting lists for drugs? 
74

 DR. DUKE. The most recent report I saw was right around the end of 

March, and I believe there were 13 States on that list at that time. 

 MR. SHIMKUS. Do these waiting lists represent all individuals not 

being treated? 

 DR. DUKE. They represent those who are not able to get drug 

assistance from the States. 

 MR. SHIMKUS. So they may be getting treated, but they are just not 

getting the drug--that is my question. Are they getting treatment? 

 DR. DUKE. There is treatment available, but the treatment that is 

preferred is medication, and the medications are quite expensive. 

 MR. SHIMKUS. Is it true that an individual eligible for ADAP 

services in one State may not be eligible for it in another State? 

 DR. DUKE. The ADAP programs are set up differently in the 

different States. 

 MR. SHIMKUS. And why? 

 DR. DUKE. The Nation-- 

 MR. SHIMKUS. Nice grin. 

 DR. DUKE. The Nation-- 

 MR. SHIMKUS. This is a policy debate here. 

 DR. DUKE. The Nation is a Federal system, and we have, through 

the Ryan White CARE Act, a Federal system which says different States 

operate differently and we try to reflect the Federal system in the way 

that legislation is passed, and we implement that legislation as it is 

passed. 

 MR. SHIMKUS. And I am a supporter of federalism, but again, when 

you have an individual constituent or consumer, and again, you border 

three States, it really could be, you know, the metropolitan St. Louis 

community, but it is a metropolitan statistical area in essence, although 

Missouri sometimes doesn’t want to accept us, many of us that live 15 

minutes from Busch Stadium feel that we are as much a part of the St. 

Louis community as anybody else. If there is a differential and treatment 

options for an HIV citizen in St. Louis versus, you know, in Granite City, 

Illinois, then it is problematic for many of us policymakers. 

 DR. DUKE. One of the principles that we have worked on with the 

Congress in the concepts of reauthorization is to try to find some way to 

equalize treatment as you go across the country so that patients in any 

one of the three States you have mentioned would in essence be eligible 

for equal treatment under the provisions of the Ryan White CARE Act. 

So the principle you have asserted is one that we obviously agree with in 

our approach to this reauthorization. 

 MR. SHIMKUS. Great. I appreciate your testimony and look forward 

as we move the process forward. 

 Mr. Chairman, I yield back my time. 
75

 DR. DUKE. Thank you. 

 MR. DEAL. I thank the gentleman. 

 Mr. Rush is recognized for questions. 

 MR. RUSH. Thank you, Mr. Chairman. Mr. Chairman, I don’t know 

whether or not you have already provided this, but I would ask for 

unanimous consent to insert my opening statement into the record. 

 MR. DEAL. Yes. I would, at this point, say that I would ask the 

same unanimous consent for both those people who are here or those 

who are absent, and without objection, that will be so ordered. 

[Additional statements submitted for the record follows:] 

PREPARED STATEMENT OF THE HON. BOBBY RUSH, A REPRESENTATIVE IN CONGRESS FROM 

THE STATE OF ILLINOIS

Mr. Chairman: 

I want to thank you for holding this hearing to give the Members of the 

Subcommittee the opportunity to examine the Administration’s principals for 

reauthorizing the Ryan White Care Act, which were unveiled in July of last year (2005). 

The Ryan White CARE Act is the nation’s largest, most successful and most 

important source of discretionary federal funding for HIV/AIDS related services. The 

CARE Act funds primary health care and support services for people with HIV/AIDS 

who lack health insurance and financial resources for their care. Congress first enacted 

the CARE Act in 1990: the ACT was reauthorized in 1996 and again in 2000. 

 Each year, the CARE Act programs reach more than 500,000 individuals with or at 

risk for HIV in all 50 states, the District of Columbia, Puerto Rico, and the U.S. 

territories. 

In Illinois, there are more than 35,000 people living with HIV/AIDS and our 

communities rely on nearly $75 million a year in CARE Act funds to provide the 

necessary medical and support services to low-income and under/uninsured individuals 

living with the disease. Chicago ranks sixth in the country for urban areas most impacted 

by the HIV/AIDS epidemic, with approximately 28,000 people living with HIV disease 

in the Chicago Eligible Metropolitan Area (EMA). 

Despite the improvements in the health outcomes of AIDS patients in the general 

population, in communities of color AIDS is the leading cause of death of African 

American women between the ages of 25 and 34 and the third leading cause of death 

among Hispanics between the ages of 35 and 44. 

It is in this reality, and in the absence of new funding to expand the provisions of the 

CARE Act to meet the increasing need, that this Committee is challenged to design a 

reauthorization bill that equitably and effectively maintains the quality of care for those 

who are suffering from HIV and AIDS. 

I am not convinced that adoption of the set of principles outlined by the 

Administration will help us achieve that objective. 

For example, the President’s principles for CARE Act reauthorization call for noless than 75% of all CARE Act funding to be directed to “core medical services.” The 

debate that has ensued in my district in Chicago and the south suburbs centers on what 

the appropriate mix of services is and what services constitute “core medical services.” 

The President’s principles also call for the development of a “severity of need 

index” that would factor new HIV cases, rates of poverty and other public and private 

resources available for HIV/AIDS as part of CARE Act funding-distribution formulas. 

For my state - Illinois - that has made significant investments of state tax dollars to 

expand Medicaid eligibility, keep the Aids Drug Assistance Program (ADAP) strong, and 
76

increase the availability of prevention services, a “severity of need index” would seem to 

penalize these investments. 

These are just a few of the questions that I, and my constituent have about the 

administration’s principles for reauthorizing the Ryan White Care Act. I look forward to 

the testimony of the panel before us in answering some of those questions. 

PREPARED STATEMENT OF THE HON. JOE BARTON, CHAIRMAN, COMMITTEE ON ENERGY 

AND COMMERCE

Good morning. Mr. Chairman, I commend you for holding this hearing. I look 

forward to working with you and the rest of the Subcommittee as we consider how to 

improve the Ryan White CARE Act to ensure persons with HIV and AIDS will continue 

to have access to services necessary to address their health care needs. 

The Ryan White CARE Act expired last year. This hearing provides an 

opportunity—actually the imperative—to strengthen and improve it. As Chairman, I 

have not supported the creation of disease-specific prevention and treatment programs. 

This law is the only major federal disease-specific comprehensive treatment program in 

existence. In fact, this demonstrates some inconsistencies that come with disease-specific 

programs. The act funds non-medical services that even Medicaid or Medicare will not 

support, including companion services and housing. A measure of caution and oversight 

is warranted, therefore, in how we spend Ryan White dollars as we move forward. To 

put it simply, Ryan White dollars should go to prevent the spread of HIV and AIDS and 

for their treatment. Let me be clear: every person with HIV or AIDS should have access 

to core medical services. To accomplish this goal, we need to carefully examine how 

Ryan White funds are being used at every level—by cities, by states, by providers, and by 

HRSA. 

We should also be mindful of other inequities created under current law. Why it is 

that some localities, called Eligible Metropolitan Areas or “EMAs,” receive direct federal 

funding although they no longer meet eligibility thresholds? Why it is that certain EMAs 

receive a disproportionate share of Ryan White funds due to outdated funding 

mechanisms? Why it is that considerably more funds go to certain areas even though 

they have similar numbers of cases? And why it is that the estimated funding per AIDS 

case is around $5,500 for persons living in Texas, around $6,700 for persons living in 

Colorado, and over $11,000 for persons living in South Dakota? This wide variation 

requires some reasonable justification. 

Mr. Chairman and members of this Subcommittee, these are the fundamental 

questions we should address as we consider reauthorizing this program. If we do not 

reauthorize this bill, the shortcomings and inherent inequities of this program will persist. 

Reauthorization must be approached responsibly, however. We have a responsibility to 

those who need treatment and to American taxpayers whose dollars fund this program. 

In order to guarantee that tax dollars are being properly spent, a reauthorized Ryan White 

program must be more accountable, more transparent, and more equitable. 

I look forward to hearing from our two witnesses from the Department of Health and 

Human Services about how this program is administered and what reforms are 

recommended for improvement. I also look forward to hearing the findings and 

recommendation of the GAO with regards to improving this program. Thank you 

Chairman Deal for calling this hearing today and I welcome the panel of witnesses. 

 MR. RUSH. Thank you, Mr. Chairman. 

 Mr. Chairman, I want to ask Dr. Duke. I want to continue a line of 

questioning that Congressman Waxman initiated, because I, too, have 

concerns that Title IV would be severely damaged if funds were set aside 
77

for core medical services which are articulated in the President’s 

principles as basic primary care and medications needs. Title IV is 

successful because it offers a broad arrangement of family-centered 

services that are essential to getting mothers to take care of their own 

health, to keep children in care, to give the mom the support she needs, 

like childcare and transportation, to get her kids and herself to doctor’s 

appointments and the pharmacy, and to reaching out to the HIV infected 

youth and keeping them in care also. 

 So the question I have for you, Dr. Duke, is what changes would the 

Administration like to see for Title IV, and more specifically, I would 

like to ask, do you want this Congress to apply or set aside a provision 

for Title IV funds for core medical services? 

 DR. DUKE. The principles that we brought to this dialogue about 

reauthorization did not envision the dismantling of the Title structure of 

the Act at all. Title IV, which has been very successful, would be an 

important part of the Act as it is reauthorized, and as we work with the 

committee around the provision of services, we would see that as part of 

the dialogue what would be included in Title IV. 

 MR. RUSH. In another sense, there was a time in past discussions 

about reauthorization of the Ryan Act I have heard from some 

constituent organizations about disparity in terms of funding going to 

organizations that were primarily based out of minority communities. Is 

that an ongoing problem or is that problem been pretty well eliminated 

now? Have there been any causes that you have recently heard of of 

where there have been some problems with Ryan White CARE funds 

going to, say, organizations that are located in minority communities as 

opposed to some of the older, more experienced, more mature 

community-based organizations and health clinics? 

 DR. DUKE. Sir, I haven’t heard any criticism along those lines. 

Indeed, we have tried to elicit engagement of all communities in assisting 

with making their members aware of their own health interests in being 

tested that early diagnosis is a good thing. So we have actually 

encouraged outreach into communities and in the additional $25 million 

that we have requested for Title III for ‘07, one of the themes of that 

money is that we need to engage all communities in reaching out to their 

members to help their members become aware of their HIV status so that 

we can bring them into care. 

 So I am unaware of the concern you have raised. 

 MR. RUSH. Let me ask you this. Newer CVOs, health clinics, are 

they treated any differently than more established health clinics in terms 

of applications for Ryan CARE funds, Ryan White CARE funds? 

 DR. DUKE. Title III capacity building planning grants, all of those 

are competitive and when those applications come in, they are reviewed 
78

by an objective review committee relative to the guidance we have put 

out, and there is no discrimination as to whether they are newer or older 

clinics. The issue is can they meet the need of the population which we 

recognize needs their services. 

 MR. RUSH. Are there any particular handicaps to newer 

organizations that might prevent them from quickly getting into the 

funding stream? 

 DR. DUKE. I think there are always challenges to new grantees in the 

sense that they need to perhaps physically get up and running in different 

space. They may need some time to set up appropriate business 

apparatus or to hire needed personnel, particularly the medical personnel 

who are in short supply. 

 MR. RUSH. Dr. Levine, I believe it is, the Secretary of HHS-- 

 DR. DUKE. Secretary Mike Leavitt. 

 MR. RUSH. Yeah. He came and testified before the committee based 

on the budget, okay, and he indicated that there would be 70 new 

community-based health clinics, FQHCs, that would be authorized in the 

budget for this year. Are you aware of that? 

 DR. DUKE. We are bringing up 88 new health clinics that have 

competed and are up and running in ‘07--’06, and we have requested 

from the Congress $181 million additional, bringing our primary care 

health center request up to almost $2 billion. Of that, $181 million is a 

request to provide new health centers in 2007 so that we would reach the 

culmination of the President’s expansion initiative to award 1,200 new 

health centers over this five to six-year period. Within that request is a 

request to provide 80 of those health centers as focused on high poverty 

areas, either in urban areas or in rural areas. So we are anxious to have 

more health centers, and many of our health centers are also providers of 

Ryan White CARE Act as well, even-- 

 MR. DEAL. The gentleman’s time has expired. 

 MR. RUSH. Thank you, Mr. Chairman. 

 MR. DEAL. We are pleased to have the Chairman of the full 

committee, Mr. Barton from Texas with us, and he is recognized for 

questions at this time. 

 CHAIRMAN BARTON. Thank you, Mr. Chairman. I apologize for not 

being here for the entire hearing. I have another hearing going on, a 

press conference, and several private meetings. That is why I was not 

here at the beginning. This is a very important hearing. I have some 

statements to make, more than really questions. I want to let our 

audience know and our witnesses know that we are going to reauthorize 

this Act. There are some rumors that we wouldn’t reauthorize it, but we 

are. Having said that, it is not my intent to do a straight reauthorization. 

I do think we need to take into account the President’s priorities as have 
79

been enunciated in the GAO study that has been put out. I think it is a 

given that we want to do everything humanly possible for those 

individuals that have contracted AIDS. If we can save their life or 

extend their life, that is a good thing, but we do need to look at these 

formulas. We do need to look at some of the non-medical services and 

see if there is a way that we can make the formulas more fair and make 

sure as many dollars as possible go to healthcare and prevention, and not 

to some of the extraneous things that have generated some of the 

negative headlines. 

 I guess I would ask our HHS witness, do you generally support the 

findings or the recommendations of the GAO study in terms of formulas 

and things like that? 

 DR. DUKE. Yes, sir. We find that the inflexibilities in the formula 

create some inequities so that patients in one area of the country have 

less access to healthcare as a result of the formulas, and so our principles 

ask that we treat the neediest first, and that we extend life and save lives. 

And the way to do that, I think, is to increase the flexibility and also the 

accountability in the Act, and we greatly appreciate your support in 

looking to reauthorize this bill. 

 CHAIRMAN BARTON. A general question to Dr. Fenton. Would you 

say that the number of cases of AIDS has stabilized in this country and 

do we seem to have a pretty good handle on the disease now? Or is it 

still a disease that is growing in its impact on our population? 

 DR. FENTON. Thank you for your question. Although we believe the 

number of new cases of HIV has remained relatively stable over the past 

5 to 10 years, we are continuing to see evolutions in the epidemic. So 

indeed, more individuals who are communities of color are being 

affected by HIV. We are having increasing concerns about young MSM, 

manual sex with men, especially manual sex with men of color. So the 

epidemic is, in fact, a dynamic epidemic. Although we may be seeing 

some of the numbers of new infections occurring each year, we are 

seeing changes in the character of the epidemic and the individuals who 

are affected by HIV. 

 CHAIRMAN BARTON. Thank you, Doctor, and thank you, Mr. 

Chairman. I yield back. 

 MR. DEAL. I thank the gentleman. 

 I had an error on our timing in the first go around, and I intend to 

equalize the timing on Mr. Waxman, Dr. Burgess, and myself. We got 

shortchanged on the first go around. With both of your indulgence, since 

you are here, I have had a request from Mr. Markey. He is a member of 

the full committee, and I would ask unanimous consent that he be 

allowed to question the panel at this time. 

 Without objection, you may proceed. 
80

 MR. MARKEY. Thank you, Mr. Chairman. 

 First of all, it just seems to me that if we are now going to debate 

whether or not we should be shifting money over from States with big 

cities over to States without big cities, but keeping the money relatively 

level-funded, that that then gets to be part of the debate about how big 

should the tax cuts be? And otherwise, we wouldn’t be having this 

discussion because we would have more money to help the States 

without big cities. And so you get into a fight over limited resources, 

when we know that the problem is actually mushrooming as each year 

goes by, as we identify an additional 30 or 40,000 people who have been 

infected. So I think that is, you know, something that everyone should 

understand. The President should just stop his plan to continue to 

increase these tax cuts until we have enough money to take care of these 

problems instead of having States fight amongst each other. 

 Now, Massachusetts has, under pressure, agreed to change from 

having a code-based system over to a name-based system. And my 

question for you, Dr. Fenton, is it is going to take 3 to 4 years in order to 

complete this process. What is the status as a result of Massachusetts 

beginning this October in terms of receiving the $15 million or so that 

the State of Massachusetts fears it is going to lose because it will not 

have completed the conversion? 

 DR. FENTON. Thank you very much for the question. 

 We are aware that Massachusetts has recently made the decision to 

shift to name-based reporting, and CDC remains committed to 

supporting Massachusetts to ensure that this occurs as quickly and as 

efficiently as possible. We are very much committed to promoting 

name-based reporting because we do believe it is-- 

 MR. MARKEY. I know that, I’m talking just about the funding. Will 

we receive the funding this October, even though we will not have had 

enough time logistically to convert over from code-based to name-based 

identification? 

 DR. FENTON. Again, I cannot comment on the amount of 

appropriations that you receive; however, I can say that we will follow 

the law as-- 

 MR. MARKEY. Under the existing law, will Massachusetts be 

eligible for that $15 million beginning in October, or will it not be 

eligible? 

 DR. FENTON. I would like to defer to my colleague. 

 DR. DUKE. We are in the process right now of trying to sort it out. 

We strongly endorse reauthorization and we are in the process right now 

of trying to sort out with the lawyers what our options are in terms of 

funding the States in transition. And so we will have to get back to you 

for the record. 
81

 MR. MARKEY. In other words, if we do not reauthorize Ryan White 

and change the law, under existing law, can you continue to give that $15 

million, which is about 30 percent of all the money spent in 

Massachusetts on AIDS and HIV patients? 

 DR. DUKE. We are in the process of trying to sort out exactly that 

question. The law requires us in ‘07 to go to HIV reporting and to do 

HIV reporting, we have to have a CDC certification that the State system 

meets CDC standards. If we don’t have that CDC certification, that is 

what the lawyers and my staff are trying to sort out right now. 

 MR. MARKEY. Well, let me go back over to Dr. Fenton then. Dr. 

Fenton, can you certify that Massachusetts, having made the 

commitment to make the switch, knowing that logistically it is 

impossible to complete it before October, won’t have all of these 

thousands of people victimized by having a cutoff of funding, even 

though the State has indicated its intention to comply? 

 DR. FENTON. Again, we are committed to ensuring that the process 

of transition occurs as quickly as possible. 

 MR. MARKEY. And so we are going to, in fact, do it and change the 

system. The question is do we lose the funding while the process is 

ongoing as we make the transition? 

 DR. FENTON. Thank you for your question. We will have to get 

back to you on that question for the record. 

 MR. MARKEY. What is your inclination, though, from your heart, 

Doctor, in terms of how these people in Massachusetts should be treated? 

I know it is going to take three or four years to get all the names. 

 DR. FENTON. I truly empathize with the situation, the difficulties 

that the transition causes all of us at the moment. I can honestly say that 

we are working as hard as we can to ensure that it does occur as quickly 

as possible. 

 MR. MARKEY. I hope that you find a way of ensuring that the 

interpretation of the law takes into account the impact it will have on 

thousands of HIV and AIDS victims. 

 Thank you. 

 MR. DEAL. I am going to go back and, as I said, three of us got 

shortchanged on the first go around on the time. We set it at three 

minutes instead of five minutes. We should have had five minutes for 

questioning. Since we are going back and forth, I am going to reserve 

mine until the end and I will recognize Dr. Burgess at this time for an 

additional two minutes of questioning. 

 MR. BURGESS. Thank you, Mr. Chairman. I did think the time went 

by rather rapidly, but I wasn’t going to question the Chairman. 

 Ms. Crosse, really the only other thing I would like to ask at this 

point is in your testimony, you said that Health and Human Services 
82

generally agreed with your identification of issues and funding formulas. 

Was there any area where you and the Department of Health and Human 

Services differed over that opinion? 

 MS. CROSSE. Not as they expressed to us in their written comments 

on the report. I believe that there may be details as you negotiate with 

the Department in working out exactly how this should be structured that 

might be more specific or vary to some extent from what we have 

recommended, but in principle I believe that they--and in their comments 

indicated that they were supportive of the concept of revising the funding 

formulas to better reflect the current distribution of the epidemic. 

 MR. BURGESS. And what about as asked by Mr. Markey, was there 

any heartburn with the timeline that was devised? 

 MS. CROSSE. Well, we were not indicating at what point this needed 

to be incorporated. We do believe that it is important that HIV case 

counts begin to be incorporated in order to better reflect the distribution 

of the epidemic, because many individuals now who are HIV-positive do 

not progress to AIDS or do not rapidly progress to AIDS, and under the 

current structure of the formulas, they are not considered in the allocation 

of funding because it is based on an estimate of living AIDS cases. 

However, we do acknowledge in our report that there is a period of time 

of transition before a system that switches to a name-based reporting 

system has comparable data to a system that is fully mature, and we 

recognize that that could take as much as three years for that to occur. 

 And so how that is incorporated and what consideration that the 

Congress gives to States that do not have mature reporting systems I 

think is something that warrants consideration as you reauthorize this 

Act. As I understand the current statute, if you do not reauthorize, 

beginning in October, those States that do not have accepted case 

counting systems will have their allocation based solely on the AIDS 

cases as currently exist. They will likely lose funding, however, because 

that will be balanced against States where both AIDS and HIV cases are 

counted. So if the pool remains the same, funds will shift to those States 

that have larger case counts because the HIV cases are included. And so 

how you would want to structure any period of transition is certainly 

something that you have to wrestle with, I believe, as you consider 

reauthorization of the Act. 

 MR. BURGESS. Thank you. Mr. Chairman, I would also just like to 

take a second to point out, I think they have all left now, but we had a 

number of students from the University of North Texas Health Science 

Center here with us this morning to hear part of this discussion. I always 

want to encourage those in medical school to be part of the formation of 

public policy. 

 With that, I will yield back. 
83

 MR. DEAL. I thank the gentleman. 

 I recognize Mr. Waxman. 

 MR. WAXMAN. Thank you, Mr. Chairman. 

 Let me, first of all, ask Dr. Fenton and Dr. Duke, you indicated you 

are going to get back to Mr. Markey to answer the question of if we do 

not reauthorize the Ryan White CARE Act, how you are going to 

distribute the funds regarding States that are moving to a name-based 

system. When will you get back to him? 

 DR. DUKE. The process of discussion is ongoing, as you can see 

from Ms. Crosse’s response. There is one thought that talks in terms of-- 

 MR. WAXMAN. I don’t want the alternatives. I just want to know if 

you are going to make a recommendation and you are going to have to 

make that decision, would you tell us what the decision is going to be 

and how fast are you going to make that decision so we can know it? I 

am just asking the timing. 

 DR. DUKE. I don’t exactly know a date certain that I can give you. I 

am working with staff and the lawyers, and I will give you a call later 

this afternoon to give you a much more precise date after I have 

discussion with the lawyers. 

 MR. WAXMAN. I would appreciate that. 

 Dr. Fenton, certainly CDC should be able to give us some estimates 

what the situation would be in those States that are in the process of 

changing to a name-based area. How fast can you give us your estimates 

that might be helpful? What we want is the appropriate proxy so that we 

can figure out the numbers to do this in a fair way. 

 DR. FENTON. We will do this in as timely a manner as possible, but 

we do have to follow the law on this issue. 

 MR. WAXMAN. I am not asking you to follow the law, I am asking 

you to follow the science. That is what CDC is all about. If you can’t 

give us an estimate for proxies, who do we rely on, other than the 

Centers for Disease Control? 

 Mr. Chairman, I am just very frustrated because it sounds like the 

Administration sent its proposal but they haven’t thought it through. 

They want to work with us, but we don’t know what they are proposing. 

The CDC is not willing to give us their expertise. So this makes it more 

difficult. 

 And along those lines, Dr. Duke, I guess the biggest problem is that 

the Administration has proposed distributing Title II funds only on the 

basis of people living outside of EMAs, and since most States that have 

EMAs have a large proportion of their population inside EMAs--in 

California, it is nearly 90 percent, for example. This would mean a 

radical shift in funds. According to the CARE Coalition, Dr. Duke, your 

proposal would mean Missouri would lose 78 percent of its Title II 
84

funds. Does the Administration support that? The District of Columbia 

would lose all of its Title II funds. Is that what the Administration 

supports? New York would lose 56 percent. Is that what the 

Administration supports? Illinois and Massachusetts would lose half of 

their Title II funds, and of course, California would lose 62 percent of its 

Title II funds. Is that what the Administration really proposes? 

 DR. DUKE. The proposal is to move to a new way of allocating Title 

I and Title II funds, which is based on the national scientific quantitative 

severity of need index, which moves away from some of the current-- 

 MR. WAXMAN. But the consequences, from what we have seen of 

the Administration’s proposal, would have those kinds of cuts. Is that 

the policy the Administration would support in your new formulas that 

you are proposing? 

 DR. DUKE. The approach that we have tried to take is to reach some 

kind of balance that would take into account both prevalence and 

incidence of new cases that would identify the significant elements such 

as poverty-- 

 MR. WAXMAN. But if it resulted in those kinds of cuts, do you think 

that would be reasonable? 

 DR. DUKE. I think that is the kind of discussion around the 

relationship of stability, which is very important, which we talked about 

earlier, stability, and at the same time, trying to move with the epidemic 

and serve the needs of individuals or patients. 

 MR. WAXMAN. Part of the problem we have with the 

Administration’s proposal is to try to understand certain concepts, and I 

didn’t get a clear answer on what these concepts are of these core 

medical services. And so it is difficult for us to determine what that 

means. That has, of course, a big impact on funds. How can you justify 

asking us to make such a significant change in this program without 

sharing all this critical information with us? Can you provide us with 

your list of grantees that are not currently spending 75 percent of their 

funds on the basis of the Administration’s definition of core medical 

services? That’s first, and what portion of their funds are spent on core 

services, in your view, and how dramatic a shift in funding are you 

proposing, and then lastly, has HRSA conducted in the analysis to 

estimate the impact of the shift of funding that would occur if 75 percent 

of all Ryan White funds are spent on core medical services? 

 I don’t expect you to answer that now, but that is information we 

ought to have before we make some of these decisions. 

 DR. DUKE. We will provide as much information as we possibly can 

for the record. 

 MR. WAXMAN. And how soon would we get that information? 

 DR. DUKE. We will have it for you within the week. 
85

 MR. WAXMAN. Okay, thank you. 

 And let me ask you about Medicaid coverage, because one way to 

deal with the press of funding that we have, a very sensible way would 

be to allow the States to provide Medicaid coverage to persons with HIV 

who are not now covered. They have to have full-blown AIDS and be 

disabled. But if we allow Medicaid to provide HIV coverage, this would 

take a lot of pressure off the Ryan White funds. 

 I wonder if you could tell me if the Administration would support 

legislation to do that? 

 DR. DUKE. I don’t have a position on that, sir. 

 MR. WAXMAN. Do you have a recommendation that you would 

make to Secretary Leavitt to consider? 

 DR. DUKE. I will take that back for discussion. 

 MR. WAXMAN. On Medicare, we have a very strange situation 

because we have many States that are on waiting lists for coverage of the 

AIDS drugs under the ADAP program, and similarly, there is a concern 

that not every State covers the appropriate array of drugs, so we need 

more money in that area. One way to get more money is that when 

people who are covered under Medicare and are age-eligible for the 

Medicare drug program, they get into that donut hole, and then the 

ADAP program continues to pay for their drugs, which means they never 

get out of the donut hole, so the catastrophic coverage comes into effect. 

That is the catch, that ADAP is paying for their drugs, and under the 

Medicare rules, they never incur the necessary out-of-pocket costs to 

trigger the catastrophic. That makes no sense. Shouldn’t we be making 

it clear that although ADAP is paying for the drugs that it should qualify 

as an out-of-pocket expenditure, and would the Administration support 

that change? 

 DR. DUKE. Sir, the interaction of different pieces of legislation is a 

concern, and we will have to take it under consideration to answer that 

for the record. 

 MR. WAXMAN. Well, you are responsible for ADAP and making the 

best use of those funds. Don’t you think that would be the best use of 

those funds, if we counted them so that Medicare comes in and picks up 

the catastrophic costs? 

 DR. DUKE. I will have to get a position back to you, sir. 

 MR. WAXMAN. Have you raised the issue with Secretary Leavitt? 

 DR. DUKE. There have been many discussions of interactions of 

laws, sir. 

 MR. WAXMAN. Have you raised it with Secretary Leavitt? 

 DR. DUKE. We’ve had many discussions. 
86

 MR. WAXMAN. Now, I would like clarification--Ms. Capps asked 

the question. Dr. Fenton, CDC uses statistics on actual living AIDS 

cases, does it not? 

 DR. FENTON. That is correct. 

 MR. WAXMAN. And when you are looking at the epidemic, you 

don’t use the formula written in the Ryan White Act that only looks back 

10 years. For example, you use actual living AIDS, is that right? 

 DR. FENTON. We provide data on a variety of indicators to our 

colleagues at HRSA, including HIV reports as well as 10-year, 12-month 

AIDS case reports for consideration. 

 MR. WAXMAN. Well, I think Ms. Capps’ point was two-fold. One, 

actual living AIDS is a more accurate count of persons with AIDS than 

the Ryan White estimate, and two, using data on actual living AIDS 

cases provides the best data for use for any proxy to estimate persons 

living with HIV until the name-based system is mature. Don’t you 

agree? 

 DR. FENTON. I would like to consider that with colleagues and get 

back to you for the record. 

 MR. WAXMAN. Well, Mr. Chairman, I appreciate your generosity in 

letting me pursue these questions, but I must express my frustration. We 

want to work with the Administration, but if they give us a proposal, they 

ought to be able to back up the proposal. They ought to tell us what it 

means, and if they can’t figure that out, it makes it difficult. 

 And if you will let me have just one point with Ms. Crosse. This 

may have been beaten to death, but I guess the question is you have been 

criticized for using only Title I and Title II. Would you agree that 

another valid way to understand the complete picture of funding under 

the CARE Act would be to look at the distribution of funds under all the 

Titles, and would you also agree that GAO’s conclusions and 

recommendations might have been very different had the funding across 

all Titles been taken into account? 

 MS. CROSSE. Sir, I cannot go so far as to say that our conclusions 

and recommendations would have been different absent any examination 

of those other factors. I would have concerns about linking the nonformula based distributions that rely upon competitive grants and that 

could change from year to year-- 

 MR. WAXMAN. Well, you obviously decided you didn’t want to do 

it that way. Could you see someone else doing it that way, since we are 

talking about massive redistribution of money if we don’t take those 

other Titles into consideration? You may not agree with that 

formulation, but don’t you think that is another valid way to do it, or do 

you think it is completely invalid? 
87

 MS. CROSSE. I would be concerned about including some portions 

of those other fundings. Some parts of it, I think, could validly be 

included. 

 MR. WAXMAN. Okay, thank you. 

 Thank you, Mr. Chairman. 

 MR. DEAL. Thank you. I will use my time that I didn’t give myself 

at the beginning, to sort of wind this whole thing up. 

 First of all, with regard to Ms. Crosse, the survey, and the report that 

you did, do you know what percentage of overall funding in this Ryan 

White program is included in Titles I and II? 

 MS. CROSSE. I believe it is approximately 80 percent of the funding, 

or at least in the fiscal year that we examined it was about 80 percent. 

 MR. DEAL. So that is where the bulk of the money is going? 

 MS. CROSSE. That is where the bulk of the money is going, and that 

is the funding that is linked to the cases. 

 MR. DEAL. Are the others linked to grant programs based on the 

justifications of the applications that are submitted? 

 MS. CROSSE. That is correct. 

 MR. DEAL. Am I correct that those communities, cities, and States 

that are eligible under Title I and II are also eligible for the grant 

programs? Is that correct? 

 MS. CROSSE. That is correct. 

 MR. DEAL. So they are not discriminated against in the other Titles? 

 MS. CROSSE. No, those funds go to successful grant applicants, 

including some local health departments, State health departments, 

depending upon what funding they have applied for. 

 MR. DEAL. Okay. Dr. Fenton, how long have the States known that 

they needed to go to a name-based reporting system? How long has that 

been out there? 

 DR. FENTON. CDC included the shift to name-based reporting in its 

1999 guidelines. 

 MR. DEAL. So that is quite a while that States have known it. I 

mean, it is not something that is the fault of the CDC or anyone else to 

say that they didn’t know it. That is my judgment, based on those kind 

of timelines, and most everybody has complied, is that right? 

 DR. FENTON. Well, currently, as I have said in my testimony, 43 

States have currently shifted over to name-based reporting and we are 

anticipating that more will do so by the end of the year. 

 MR. DEAL. Right. There have been several things talked about, and 

I think we go back to the idea under Title I and Title II. How is the most 

equitable way to determine who needs the services? I think that Dr. 

Duke’s suggestion that one of the things, even within the numbers, that 

needs to be considered is the severity of need. Even though you may be 
88

counted in the numbers, the need on a case-by-case basis varies 

significantly. Is that the general gist of the severity of need criteria, Dr. 

Duke? 

 DR. DUKE. The severity of need criteria is designed to try to 

understand how we could distribute funds, you know, in a way that 

would be consistent with a picture of what the epidemic looks like today. 

In here, we are talking about the prevalence of the disease, the incidence 

of the disease, the new cases coming in, the level of poverty, and other 

factors that would help us understand on a nationwide basis how to 

distribute it so that the patient, the individual patient is treated fairly 

across the United States. 

 MR. DEAL. Of course, you know, in a simplistic world, it would 

seem to me that the idea of letting us just come up with an actual count 

and I guess one of the things that disturbs me, and I will spare you the 

full extent of my political story. It is one that is prevalent in my State for 

a long time about the fellow out on Election Day walking through the 

cemetery with absentee ballots writing the names down off the 

headstones. He was asked about it and he said well, they deserve to vote 

just like everybody else. It bothers me that we are allowing a system that 

counts deceased individuals, and as I understand it, with the EMAs, you 

actually may count those individuals twice. Am I correct, Ms. Crosse? 

 MS. CROSSE. That is correct in one jurisdiction. 

 MR. DEAL. Okay. Is that San Francisco? 

 MS. CROSSE. Yes, sir. 

 MR. DEAL. Okay. So we have got things built in to what we have 

done over the past that have distorted getting to the same treatment for 

individuals, regardless of where they might live in this country. One of 

the phrases that was used was the hold harmless communities. How 

many of those are now built in to the law? 

 MS. CROSSE. For the EMAs, there are 29 of the 51--I am sorry. I 

am not speaking to hold harmless, I am speaking to the grandfather 

clause. I am sorry, I don’t have that figure at my fingertips. There are, I 

believe, about 15 that are held harmless under Title I. Only two of those 

receive significant funding, the remainder receive very, very minimal 

funding under the hold harmless provision. 

 MR. DEAL. So we have got the hold harmless, which really distorts 

the counting individuals. We have got the grandfather clause, which also 

distorts the way you count individuals. Is the name-based reporting 

system, Dr. Fenton, designed to eliminate some of those inconsistencies 

in the way we count who is eligible for assistance, or does it have 

another purpose? 

 DR. FENTON. Well, name-based reporting really is the gold standard 

of reporting, and all of infectious diseases in the United States are 
89

reported using this mechanism. The beauty of the name-based reporting 

is that it enables States to de-duplicate their numbers much more 

effectively. It is also a much more cost-effective system, and it is a much 

more cost-efficient system as well. So the key benefit is the ability to deduplicate at the State level, and also to de-duplicate between States as 

well. 

 MR. DEAL. All right. Well, I have exhausted my time, too. 

 This has been a very good panel. As I said at the outset, we will 

expect to have a roundtable discussion from others who are in the 

community of providers and those who may be affected by the disease, 

and we will try to have that in the very near future so that the concerns 

that Mr. Pallone has addressed will be able to be heard by the committee 

at that time. 

 I would also add that any questions that committee members would 

like to submit may be allowed to be submitted to you in writing, and I 

think you have heard some today that probably will ask for follow-up on 

that. 

 Thank you all for your attendance today, and with that, the hearing 

adjourned. 

 [Whereupon, at 11:35 a.m., the subcommittee was adjourned.] 
90

RESPONSE FOR THE RECORD BY DR. ELIZABETH DUKE, ADMINISTRATOR, HEALTH 

RESOURCES AND SERVICES ADMINISTRATION, U.S. DEPARTMENT OF HEALTH AND HUMAN 

SERVICES

Rep. Bobby Rush (D-IL)

1. Do you support the recommendation that reauthorization legislation specify the 

amount of funding that should be dedicated to core medical services, and if so, what 

rationale do you use to justify the percentage of funding - 75 percent – that you 

recommend? 

Under current law, providers funded under the Ryan White CARE Act may offer a broad 

range of services to their patient, but only some can be considered life-saving and lifeextending. In addition, the services offered to CARE Act clients vary across geographic 

regions. The proposed change is intended to foster health among HIV infected 

individuals and uniformity of services across the country by designating a basic set of 

core health care services for all CARE Act clients. The components of core services 

would, at a minimum, include health care services and medications for which 71% of 

CARE Act funding was directed in 2004. An additional 9% of CARE Act funding in 2004 

supported case management services, a health-related service key in helping persons 

gain and maintain access to treatment. Thus the 75% minimum is in line with program 

expectations and supported by program data. Both Title I and Title II program guidance 

describe the elements of a continuum of care and utilize the term “core services.” In the 

2005 Title I guidance, grantees were asked to prioritize essential core services, describe 

the priority setting and allocations processes, and how data was used in this process to 

increase access to core services. The guidance also asks grantees to justify other sources 

of core services if funds are not allocated to these services. For the top services, 

including core services, grantees are asked to develop one or more service goals for each 

priority with time-limited and measurable program objectives. 

2. What services do you believe constitute “core medical services” and what is your 

rationale? 

Various groups have developed lists of “core medical services” for people living with 

HIV and AIDS. In particular, the Institute of Medicine (IOM) study, “Public Financing 

and Delivery of HIV/AIDS Care,” published in 2004, defined eight broad areas that 

capture the critical components of HIV care as listed below. 

• Outpatient primary care medical services 

• Medications, including highly active antiretroviral therapy (HAART) 

• Other drug therapies 

• Laboratory and radiological services 

• Oral health care 

• Obstetrics and reproductive health services of HIV-infected women 

• Outpatient mental health and substance abuse services 

• Home health and hospice care 

• Medical case management 

• HIV prevention services 

We will continue to work with Congress during the reauthorization process to evaluate 

what services should be included. 
91

3. In its 2004 recommendations to Congress on maximizing Federal funding for 

HIV/AIDS care, the Institute of Medicine (IOM) defined core medical services as 

including primary care services, medications, mental health and substance abuse 

treatments (in-patient and out-patient), case management, prevention education, and 

obstetric/reproductive health services. 

Please comment on this recommendation and your rationale if you propose a 

different mix of “core medical services”? 

The Administration is still working closely with Congress on the final definition of “core 

medical services,” and recommendations from the IOM study that defined a list of eight 

broad areas as “core medical services” have been incorporated into the discussions. 

4. The President’s principles also call for the development of a “severity of need index.” 

Why would Congress create disincentives for State and municipal governments to 

invest in Medicaid, the AIDS Drug Assistance Program (ADAP), and prevention, 

especially at a time when Federal dollars are not keeping pace with the epidemic? 

Please comment on the “severity of need index” idea and your specific 

recommendations to leverage more State, municipal, and private investment in 

AIDS-related services? 

The President’s Principles call for more equitable distribution of CARE Act funds. 

Important provisions in the law, such as maintenance of effort and the matching fund 

requirement, will continue to safeguard against the diversion or reduction of State and 

local funds away from critical HIV/AIDS services. A severity of need index, as proposed 

in the President’s reauthorization principles, calls for the establishment of objective 

indicators in determining severity of need for funding core medical services and proposes 

that such an index take into account HIV incidence, level of poverty, availability of 

resources including local, State and Federal programs and support, and private 

resources. Such index will allow for better targeting of CARE Act dollars while assuring 

that State, municipal, and other investments in HIV/AIDS related services continue to 

support Federal efforts in HIV care and treatment. 

5. Title IV of the CARE Act provides an important link to care, services and research 

for women, children, youth and families affected by HIV/AIDS and have led the way 

in reducing mother-to-child transmission from more than 2,000 babies born HIVpositive each year to fewer than 200. Title IV programs bring HIV-infected pregnant 

women into care and help them adhere to their treatment regimens for the duration of 

their pregnancy and delivery. Following delivery, Title IV nurses and case managers 

follow up to ensure the mother is administering the required six-week treatment 

regimen to the newborn. 

Given these successes, performed each and every day by Title IV projects across the 

country, do you agree that the Title IV model of care should be continued, 

strengthened and expanded in reauthorization? 

We continue to work with Congress during the reauthorization process to ascertain the 

appropriate services and activities under Title IV of the CARE Act.
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6. I have concerns that Title IV would be severely damaged if funds were set aside for 

“core medical services,” which are articulated in the President’s principles as “basic, 

primary care and medication needs.” Title IV is successful because it offers a broad 

range of family-centered services that are essential to getting mothers to take care of 

their own health, to keep children in care, to give mom the support she needs – like 

child care and transportation – to get her kids and herself to doctor appointments and 

the pharmacy, and to reaching out to HIV-infected youth and keeping them in care. 

My question is what changes would the Administration like to see made to Title IV? 

Specifically, do you want Congress to apply a set-aside of Title IV funds for “core, 

medical services”? 

Although the Title IV program of the CARE Act is structured differently than the other 

Titles, in essence the main goal is to assure that its clients receive core medical services, 

including primary medical care and medications. Because there is no final definition of 

core medical services as yet, it is difficult to predict which, if any, of the Title IV-funded 

services may face a possible reduction in funding. It is anticipated that many CARE Act 

programs may have to make modifications to their programs based on the application of 

the requirement to spend 75% of their funds on “core medical services”. However, the 

change is intended to assure quality health care for HIV-infected individuals and 

uniformity of services for CARE Act clients across the country. 

7. Given the rise in HIV and AIDS infections in African American women, we need to 

look at ways to reach this population more effectively. The President spoke about 

this in his State of the Union Address, yet the Administration’s principles were 

virtually silent on the fact that 88% of people serviced by Title IV are people of 

color. 

What plans does HRSA have for making sure that the Title IV family-centered care 

model, which has been a lifeline for women of color and their families since 1988, is 

able to serve more families of color? 

The Title IV program will continue to reach out to communities of color through its 

programs, as well as through the use of the Minority AIDS Initiative funding, to identify, 

enroll in services and retain in services women of color and their families. The program 

has utilized many unique approaches to outreach in these communities, including 

through faith-based and community-based non-clinical programs that provide HIV 

prevention and education services and make referrals for counseling and testing. 

Utilizing these approaches reaches people in settings that are non-threatening and 

conducive to open and honest exchange of information about issues such as HIV. 

8. My city and State have and will continue to contribute to the care of our residents 

living with HIV/AIDS. We are also committed to ensuring that every American 

living with this disease has adequate health care and understand the need for a more 

equitable funding distribution. Yet, in the absence of new funding to adequately 

address the epidemic in all areas, the Administration has proposed changes to 

funding formulas that would shift funding from needy individuals in urban areas to 

needy individuals in rural areas. 

Shifting funding from hard hit urban areas like Chicago where more than 80 percent 

of those living with HIV/AIDS reside would not address existing disparities across 
93

the country, but would instead do double harm: it would destabilize the existing 

health care networks in large cities, and it would put funding for health care where no 

health infrastructure exists to deliver these services. 

How does the Administration propose to address these concerns? 

The President’s principles call for more equitable distribution of CARE Act funds, which 

is paramount in the reauthorization. Proposed changes in the CARE Act are not 

intended to destabilize services, but are designed to assure that persons in need of HIV 

services and unable to pay for them will be able to receive those services. By 

maintaining important provisions in current law, such as maintenance of effort and 

matching fund requirements, the Administration will ensure that states continue to 

contribute state and local funds to critical HIV/AIDS services. 
94

RESPONSE FOR THE RECORD BY DR. KEVIN FENTON, DIRECTOR, CENTERS FOR DISEASE 

CONTROL AND PREVENTION, U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

Question for the Record from Representative Rush.

1. In January of this year, the Illinois Department of Public Health began to implement 

the transition from code-based to name-based HIV surveillance data. Even with this 

change, our State may lose millions of CARE Act dollars because its name-based 

database will not be as complete as other states when funding distributions area 

made. 

 Will CDC support provisions in the CARE Act reauthorization to allow code-toname based states to phase in their name based reporting programs without funding 

penalties? 

CDC will implement the provisions contained in the law as enacted for the 

reauthorization of the Ryan White CARE Act. CDC is committed to assisting states to 

move from code-based to name-based surveillance systems as quickly as possible.

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