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74–093 2012

RYAN WHITE EXTENSION ACT OF 2009 

HEARING 

BEFORE THE

SUBCOMMITTEE ON HEALTH 

OF THE

COMMITTEE ON ENERGY AND 

COMMERCE 

HOUSE OF REPRESENTATIVES 

ONE HUNDRED ELEVENTH CONGRESS 

FIRST SESSION 

SEPTEMBER 9, 2009 

Serial No. 111–60 

( 

Printed for the use of the Committee on Energy and Commerce 

energycommerce.house.gov 


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COMMITTEE ON ENERGY AND COMMERCE 

HENRY A. WAXMAN, California, Chairman 

JOHN D. DINGELL, Michigan 

Chairman Emeritus 

EDWARD J. MARKEY, Massachusetts 

RICK BOUCHER, Virginia 

FRANK PALLONE, JR., New Jersey 

BART GORDON, Tennessee 

BOBBY L. RUSH, Illinois 

ANNA G. ESHOO, California 

BART STUPAK, Michigan 

ELIOT L. ENGEL, New York 

GENE GREEN, Texas 

DIANA DEGETTE, Colorado 

Vice Chairman 

LOIS CAPPS, California 

MICHAEL F. DOYLE, Pennsylvania 

JANE HARMAN, California 

TOM ALLEN, Maine 

JANICE D. SCHAKOWSKY, Illinois 

CHARLES A. GONZALEZ, Texas 

JAY INSLEE, Washington 

TAMMY BALDWIN, Wisconsin 

MIKE ROSS, Arkansas 

ANTHONY D. WEINER, New York 

JIM MATHESON, Utah 

G.K. BUTTERFIELD, North Carolina 

CHARLIE MELANCON, Louisiana 

JOHN BARROW, Georgia 

BARON P. HILL, Indiana 

DORIS O. MATSUI, California 

DONNA M. CHRISTENSEN, Virgin Islands 

KATHY CASTOR, Florida 

JOHN P. SARBANES, Maryland 

CHRISTOPHER S. MURPHY, Connecticut 

ZACHARY T. SPACE, Ohio 

JERRY MCNERNEY, California 

BETTY SUTTON, Ohio 

BRUCE L. BRALEY, Iowa 

PETER WELCH, Vermont 

JOE BARTON, Texas 

Ranking Member 

RALPH M. HALL, Texas 

FRED UPTON, Michigan 

CLIFF STEARNS, Florida 

NATHAN DEAL, Georgia 

ED WHITFIELD, Kentucky 

JOHN SHIMKUS, Illinois 

JOHN B. SHADEGG, Arizona 

ROY BLUNT, Missouri 

STEVE BUYER, Indiana 

GEORGE RADANOVICH, California 

JOSEPH R. PITTS, Pennsylvania 

MARY BONO MACK, California 

GREG WALDEN, Oregon 

LEE TERRY, Nebraska 

MIKE ROGERS, Michigan 

SUE WILKINS MYRICK, North Carolina 

JOHN SULLIVAN, Oklahoma 

TIM MURPHY, Pennsylvania 

MICHAEL C. BURGESS, Texas 

MARSHA BLACKBURN, Tennessee 

PHIL GINGREY, Georgia 

STEVE SCALISE, Louisiana 

(II) 


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SUBCOMMITTEE ON HEALTH

FRANK PALLONE, JR., New Jersey, Chairman 

JOHN D. DINGELL, Michigan 

BART GORDON, Tennessee 

ANNA G. ESHOO, California 

ELIOT L. ENGEL, New York 

GENE GREEN, Texas 

DIANA DEGETTE, Colorado 

LOIS CAPPS, California 

JAN SCHAKOWSKY, Illinois 

TAMMY BALDWIN, Wisconsin 

MIKE ROSS, Arkansas 

ANTHONY D. WEINER, New York 

JIM MATHESON, Utah 

JANE HARMAN, California 

CHARLES A. GONZALEZ, Texas 

JOHN BARROW, Georgia 

DONNA M. CHRISTENSEN, Virgin Islands 

KATHY CASTOR, Florida 

JOHN P. SARBANES, Maryland 

CHRISTOPHER S. MURPHY, Connecticut 

ZACHARY T. SPACE, Ohio 

BETTY SUTTON, Ohio 

BRUCE L. BRALEY, Iowa 

NATHAN DEAL, Georgia, 

Ranking Member 

RALPH M. HALL, Texas 

BARBARA CUBIN, Wyoming 

HEATHER WILSON, New Mexico 

JOHN B. SHADEGG, Arizona 

STEVE BUYER, Indiana 

JOSEPH R. PITTS, Pennsylvania 

MARY BONO MACK, California 

MIKE FERGUSON, New Jersey 

MIKE ROGERS, Michigan 

SUE WILKINS MYRICK, North Carolina 

JOHN SULLIVAN, Oklahoma 

TIM MURPHY, Pennsylvania 

MICHAEL C. BURGESS, Texas 


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C O N T E N T S 

Page 

Hon. Frank Pallone, Jr., a Representative in Congress from the State of 

New Jersey, opening statement .......................................................................... 1 

Hon. Ed Whitfield, a Representative in Congress from the Commonwealth 

of Kentucky, opening statement ......................................................................... 3 

Hon. Henry A. Waxman, a Representative in Congress from the State of 

California, opening statement ............................................................................. 3 

Prepared statement .......................................................................................... 5 

Hon. Michael C. Burgess, a Representative in Congress from the State of 

Texas, opening statement .................................................................................... 9 

Hon. John D. Dingell, a Representative in Congress from the State of Michigan, opening statement ....................................................................................... 10 

Hon. Eliot L. Engel, a Representative in Congress from the State of New 

York, opening statement ...................................................................................... 11 

Hon. Marsha Blackburn, a Representative in Congress from the State of 

Tennessee, opening statement ............................................................................ 13 

Hon. Jane Harman, a Representative in Congress from the State of California, opening statement .................................................................................... 13 

Hon. Kathy Castor, a Representative in Congress from the State of Florida, 

opening statement ................................................................................................ 14 

Hon. Gene Green, a Representative in Congress from the State of Texas, 

opening statement ................................................................................................ 15 

Hon. Lois Capps, a Representative in Congress from the State of California, 

opening statement ................................................................................................ 16 

Hon. Anna G. Eshoo, a Representative in Congress from the State of California, opening statement .................................................................................... 17 

Hon. John P. Sarbanes, a Representative in Congress from the State of 

Maryland, opening statement ............................................................................. 18 

Hon. Betty Sutton, a Representative in Congress from the State of Ohio, 

opening statement ................................................................................................ 18 

Hon. Donna M. Christensen, a Representative in Congress from the Virgin 

Islands, opening statement ................................................................................. 19 

Hon. Christopher S. Murphy, a Representative in Congress from the State 

of Connecticut, opening statement ..................................................................... 20 

Hon. Joe Barton, a Representative in Congress from the State of Texas, 

opening statement ................................................................................................ 21 

WITNESSES

Mary Wakefield, Administrator, Health Resources and Services Administration, United States Department of Health and Human Services .................... 22 

Prepared statement .......................................................................................... 25 

Marcia Crosse, Ph.D., Health Care Director, U.S. Government Accountability 

Office ..................................................................................................................... 53 

Prepared statement .......................................................................................... 56 

Julie M. Scofield, Executive Director, National Alliance of State and Territorial AIDS Directors ........................................................................................... 67 

Prepared statement .......................................................................................... 69 

Donna Elaine Sweet, M.D., MACP, AAHIVS, Professor, Department of Internal Medicine, University of Kansas, School of Medicine, Board Chair, American Academy of HIV Medicine ........................................................................... 97 

Prepared statement .......................................................................................... 99 


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RYAN WHITE EXTENSION ACT OF 2009 

TUESDAY, SEPTEMBER 9, 2009 

HOUSE OF REPRESENTATIVES, SUBCOMMITTEE ON HEALTH, COMMITTEE ON ENERGY AND COMMERCE, Washington, DC. 

The subcommittee met, pursuant to call, at 11:07 a.m., in Room 

2123, Rayburn House Office Building, Hon. Frank Pallone, Jr., 

[chairman of the subcommittee] presiding. 

Present: Representatives Pallone, Dingell, Eshoo, Engel, Green, 

DeGette, Capps, Harman, Barrow, Christensen, Castor, Sarbanes, 

Murphy, Sutton, Waxman (Ex Officio), Deal, Whitfield, Shimkus, 

Pitts, Burgess, Blackburn, Gingrey, and Barton (Ex Officio). 

Staff Present: Naomi Seiler, Health Policy Analyst; Camille 

Sealy, Legislative Fellow; Alvin Banks, Special Assistant; Miriam 

Edelman, Special Assistant; and Chad Grant, Minority Legislative 

Analyst. 

OPENING STATEMENT OF HON. FRANK PALLONE, JR., A REPRESENTATIVE IN CONGRESS FROM THE STATE OF NEW JERSEY 

Mr. PALLONE. The subcommittee will be called to order. We are 

minus a gavel today, but I don’t think we really need it. Let me 

announce this morning that the hearing this morning is on the 

Ryan White CARE Act of 2009—actually a discussion draft. So we 

don’t have a bill number. I will recognize myself initially for an 

opening statement. This discussion draft has been circulated by 

Chairman Waxman and myself and is based, in large part, on the 

community consensus document that was put together by a large 

number of AIDS groups from all across the country. Though we 

will be using this discussion draft as a basis for our hearing today, 

it is very much a draft, and I am interested in having conversations with the minority as well as with the Senate in an effort to 

come up with a strong piece of legislation that can be passed by 

both Chambers and be signed into law by the President. The Ryan 

White CARE Act, as many of you know, was named after a young 

boy who contracted the AIDS virus from a blood transfusion and 

sadly lost his life to this horrible disease. 

Since his death in 1990 we as a Nation have made great strides 

in preventing and treating HIV/AIDS in large part due to the Ryan 

White program. Once a guaranteed death sentence, an HIV or 

AIDS diagnosis today means a complicated and expensive mix of 

drugs and therapies that can allow individuals to live longer and 

more prolific lives and, for many, new knowledge of the disease has 


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allowed for better and more targeted prevention programs that 

have slowed the spread of HIV/AIDS. In spite of these advancements, however, there are nearly 40,000 new HIV/AIDS infections 

reported each year, and according to the CDC, approximately 1.1 

million Americans are currently living with the disease. Since the 

beginning of this epidemic, an estimated 580,000 Americans with 

AIDS have died. So I think it is more crucial than ever, given the 

high number of Americans suffering from the disease, that we have 

the Ryan White program, accounting for roughly 10 percent—or I 

should say 19 percent of all Federal funds that are used on HIV/ 

AIDS care, the program provides treatment and support services to 

individuals and families living with the AIDS virus and serves over 

half a million low-income Americans. 

The program is, without a doubt, extremely vital in our battle 

against this epidemic. In 2006, Congress reauthorized the Ryan 

White program and included a sunset provision that will eliminate 

the program entirely on October 1 of this year. I think I am pretty 

certain in saying that no one in this room today wants that to happen. That is why Chairman Waxman and I have released the draft 

legislation we are examining today. The discussion draft before us 

is based on the community consensus document and would make 

a few minor improvements to the Ryan White program. It eliminates the sunset provision so that we will never face a last-minute 

scramble to sustain vital services to our communities. In addition 

it would extend the current program for 3 years and provide more 

flexibility for the appropriators to adequately fund the Ryan White 

program to best serve the evolving needs of patients, families and 

communities. 

The discussion draft extends the exemption period for States that 

are still reporting their HIV cases under a code-based system that 

will allow those States to get their names-based systems fully up 

and running and to ensure their data is accurate and useful. In the 

same vein, it would also ensure that no transitional grant area, or 

TGA, would lose their status for the duration of this extension. It 

would continue to hold harmless provisions that were established 

during the 2006 reauthorization which protects grantees from large 

increases in funding so that we don’t disrupt the provision of care 

to patients. We have also included a few more technical tweaks to 

the current Ryan White program, all of which guarantee that patients continue to be able to access these life-saving and life-sustaining treatments and services. 

As I mentioned before, the Ryan White CARE Act is scheduled 

to sunset on September 30. So we must act now to ensure that the 

patients continue receiving the excellent care that this program 

provides. And I sincerely hope that we will be able to work in a 

productive, bipartisan, bicameral fashion to create a bill that will 

benefit over a million citizens fighting this disease in the United 

States. And I want to thank the AIDS community for their hard 

work in coming together on the consensus document. We greatly 

appreciate the work you have done. I will now recognize—well, Mr. 

Deal isn’t here, so I have my colleague from Kentucky acting as the 

ranking member today. Mr. Whitfield is recognized. 


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OPENING STATEMENT OF HON. ED WHITFIELD, A REPRESENTATIVE IN CONGRESS FROM THE COMMONWEALTH OF KENTUCKY 

Mr. WHITFIELD. Chairman Pallone, thank you very much for 

holding this hearing on the discussion draft to reauthorize the 

Ryan White legislation. All of us are very supportive of the Ryan 

White program. And back in 2006 we were happy to work in a bipartisan manner to reauthorize that program for 3 years. We do 

take you at your word today to work with us in a bipartisan way 

as we move forward to reauthorize this draft. And I might say that 

while we love this program and we recognize the benefits of this 

program, I have two particular areas of concern. Number one, in 

the discussion draft we authorized such sums as necessary for 

2010, 2012. 

When you consider the financial condition of our country right 

now, our constituents and practically every economist from every 

spectrum are very much concerned about the size of our debt. So 

number one, we spent about $2.2 billion on this program last year, 

and another reason that I really have concern about the openendedness of this is that we have a tendency—not necessarily this 

committee, but I think all committees have a tendency of relinquishing more and more authority to appropriators. And that is 

precisely what this legislation does, such sums as necessary. 

So I think we would be better you have putting in a number that 

we authorize for the two reasons that I have mentioned. I would 

also say that another area that I am concerned about is the 

grandfathering of these transitional grant areas. There are requirements that must be met for the transitional grant areas to receive 

money. And under this discussion draft, if you had an area that 

was receiving grant money for the last 3 years, then they would 

automatically be grandfathered for another 3 years. It certainly is 

possible that the need may be greater in some other area. 

So those are two areas that I particularly am concerned about. 

But once again, we are delighted that you are holding this important meeting on the discussion draft, and we hope that we can 

work with you and reach a consensus on this legislation and get 

it reported out of committee. Thank you very much. 

Mr. PALLONE. Thank you. I recognize the chairman of our full 

committee, Mr. Waxman. 

OPENING STATEMENT OF HON. HENRY A. WAXMAN, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF CALIFORNIA 

Mr. WAXMAN. Thank you very much, Mr. Chairman. Since its inception in 1990, the Ryan White program has played a critical role 

in addressing this country’s AIDS/HIV epidemic. Today more than 

half a million Americans rely on the program for basic care, treatment and support services. It is hard to imagine how patients, 

their families and our States would be able to deal with the epidemic without this program in place, which is why it is so important that we act as quickly as possible to reauthorize the program. 

With today’s hearing, we begin that process, which I hope will 

culminate in a piece of legislation that Members from both sides 

of the aisle can strongly support. I believe the discussion draft we 


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are reviewing today makes for an excellent start towards that end. 

It contains no major changes to the program. Indeed, most of its 

sections either extend existing policies or clarify parts of current 

law that have caused confusion. 

Others make changes to mitigate the stabilizing funding decreases that have resulted from the application of the 2006 reauthorization. We will hear more about these specific provisions from 

our witnesses today. I think an overarching theme that will emerge 

is that with some relatively plain fine-tuning, the Ryan White program can continue to do its good work, providing services to those 

most in need for another 3 years. This is especially important because of the program’s looming sunset deadline of September 30. 

A quick reauthorization will give grantees the stability they need 

to plan, retain staff and maintain lifesaving services for their clients. The painful budget cuts that we are seeing in so many of our 

States make it all the more important to provide that stability. 

That said, I want to underscore the word ‘‘draft’’ that is in the title 

of the document that is the subject of today’s hearing. 

This draft was informed by technical assistance from the administration as well as a community consensus paper that has been endorsed by nearly 300 organizations in 47 States. But this is just a 

starting point. We have already begun talking through various 

issues raised in the draft in a bipartisan fashion. Soon we will 

begin negotiations with our colleagues in the Senate with the commitment to doing our best to reach an agreement before the end 

of this month. That will take much hard work, but I believe we can 

get there. We simply have to. 

The people who depend on the Ryan White program for the services they need can’t wait. I look forward to working with all our 

colleagues on this committee in ensuring that we reach this goal 

and that an even stronger Ryan White program will be in our communities for another 3 years. Thank you, Mr. Chairman. 

[The prepared statement of Mr. Waxman follows:] 


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Mr. PALLONE. Thank you, Chairman Waxman. Next, the gentleman from Pennsylvania, Mr. Pitts. He waives. The gentleman 

from Texas, Mr. Burgess. 

OPENING STATEMENT OF HON. MICHAEL C. BURGESS, A 

REPRESENTATIVE IN CONGRESS FROM THE STATE OF TEXAS 

Mr. BURGESS. Thank you, Mr. Chairman. You know, with all the 

focus on health care reform in Congress right now, the Ryan White 

CARE Act probably isn’t foremost on the minds of Americans. In 

fact, probably many of our colleagues aren’t even aware of what the 

CARE Act is, and what it does. You know, in an ideal world, we 

wouldn’t have the CARE Act because we would have already found 

a cure and we would already have a reliable vaccine for this disease and prevent it before it occurs. 

And that still needs to be our foremost thought and our ultimate 

goal. I understand how dangerous HIV/AIDS is and how important 

it is to have adequate resources to prevent infection and to manage 

this disease. Over a million Americans are infected, and nearly a 

quarter of those individuals are unaware that they carry the infection and are thus at risk for continuing the spread. My home State 

of Texas is consistently in the top five with respect to the number 

of HIV and AIDS infections. 

I represent a district in north Texas that has been experiencing 

a rise in new cases. The face of AIDS has changed and we have 

a responsibility to ensure that the CARE Act is meeting the needs 

of those AIDS patients today. In the State of Texas, almost half of 

all HIV and AIDS infections are occurring in the African American 

population. The average HIV rate per 100,000 population for 

Tarrant County, one of my counties, is three times greater in the 

African American community than in other communities. In fact, 

HIV infections are increasing throughout the south. We saw a 

spike of AIDS cases in the mid 1990s and a decline in the late 

1990s and now the rates have begun to increase again and climb 

ever upwards. 

In fact, Mr. Chairman, if we look at the way the Ryan White 

CARE Act is structured, it is also important for me to ensure that 

my constituents in both rural and urban areas be equally served 

by this act. The committee has made some important changes in 

the legislation, passed in a bipartisan manner out of this committee in 2006. Unfortunately, some of those changes never made 

it into law, and I hope we simply don’t kick the can down the road 

and we invest the time necessary to really create the Ryan White 

CARE Act for the 21st century. I am saddened that it appears we 

are preparing to just push through a bill. 

We have proven just a few short years ago that this is an issue 

that Republicans and Democrats can agree on and can come together on. Congress has the opportunity to provide a better health 

care delivery system, moving from a palliative care model to a 

blended chronic care model that recognizes HIV as an increasingly 

manageable disease. 

And again, let me stress we need sufficient funding for vaccine 

research. We need sufficient funding about actually finding a cure. 

No one, no one should be come out on the short end of the stick 

because of where they live because Congress simply decided to rush 


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something through. If we really care about this population we will 

focus on patients, focus on patients and make time, make sure that 

we take the time to work across the aisle to produce such a bill. 

Thank you, Mr. Chairman. I will yield back the balance of my time. 

Mr. PALLONE. Thank you. Chairman Dingell. 

OPENING STATEMENT OF HON. JOHN D. DINGELL, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF MICHIGAN 

Mr. DINGELL. Good morning, Mr. Chairman. And thank you for 

holding this important hearing. I also want to thank today’s witnesses for joining us. I wish to applaud the National Alliance of 

State and Territorial AIDS Directors, the AIDS action and other 

members of the Ryan White Working Group. Your year-long cooperation and collaboration and consensus and priorities from the 

HIV/AIDS communities will make our work easier. Today is an important hearing for many reasons. The first is the importance of 

the subject matter. The second is the fact that the Ryan White program will expire on September 30 this year. 

That means we have a deadline against which we must work. We 

cannot let this program expire. Since 1990, the Ryan White program has been one of the most important pieces of our domestic response to the HIV/AIDS epidemic. It funds health care and support 

services for persons living with AIDS and HIV. The dollars spent 

here help over half a million people every year. As a payer of last 

resort, the Ryan White program is a critical piece of our social safety net, protecting some of our most vulnerable citizens, including 

more than 13,000 people living with HIV/AIDS in my home State 

of Michigan alone. 

I would also note that this is a program which is a very important defense to our society against the transmission and the expansion of the AIDS virus further into our society. According to the 

Kaiser Family Foundation, most of the patients who receive services from the Ryan White funds are low income. About 72 percent 

have incomes at or below the poverty level, 33 percent are without 

insurance, 56 percent are underinsured. I am working hard to 

make sure we pass this important health care reform this year so 

that no American goes without insurance. 

However, even after all the proposed insurance market reforms 

go into effect, we will need extra funding for wraparound services 

that meet the specific needs of HIV/AIDS patients. The Ryan White 

program also helps to keep the doors of community health clinics 

open to people with HIV/AIDS that have no place else to turn. 

During our health care reform discussions, we have talked at 

length about the value of the medical home model that provides 

continuous coordinated and comprehensive care to individuals. 

Many of these HIV/AIDS clinics have been operating as medical 

homes before we even had the terminology and have been doing so 

with Ryan White funds. 

Finally, this program is vital to our States and metropolitan 

areas. Without Federal funding for the Ryan White programs, 

States and localities will be left on the hook for a substantial portion of HIV/AIDS care and the society will be greatly increased in 

the risk that it faces from HIV/AIDS. 


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We cannot pass the burden on to the cities and the States and 

the communities, especially in the midst of calamitous budget 

shortfalls that they all confront. I urge my colleagues in this room 

to work collaboratively and unfortunately with great swiftness to 

ensure that we meet the September 30 deadline and to minimize 

the disruption of funding and services for people living with HIV/ 

AIDS. 

This program is too important to disappear and the dangers of 

letting that happen are far too great. I thank you, Mr. Chairman. 

I yield back the balance of my time. 

Mr. PALLONE. Thank you, Chairman Dingell. Next is the gentleman from Georgia, Mr. Gingrey. 

Dr. GINGREY. Mr. Chairman, I will waive an opening statement. 

Mr. PALLONE. The gentleman from Illinois, Mr. Shimkus. 

Mr. SHIMKUS. Thank you, Mr. Chairman. I would like to say to 

my colleagues, welcome back from our break. It is good to be here. 

And I look forward to a productive fall. This is a good start. Ryan 

White is supported, as was stated by many, by a bipartisan group 

of Members. I am not falling in the category that we have to move 

quickly or rapidly. I think we are learning that that is not always 

the best way to deal with public policy. We could do a simple reauthorization with no changes. Unfortunately we are falling down 

also the same trap as addressing draft bills, and I hope that if and 

when after this hearing we hear changes and corrections that we— 

in a bill finally gets submitted, that we would have a legislative 

hearing on the bill. It has been the history of this committee to do 

that. It hasn’t been the current history of this committee to do that. 

So we are kind of back where we started from before the break, 

having hearings on draft legislation instead of real legislation. And 

I hope we change course with that. I am happy to be back and 

happy to see all my colleagues. And I yield back the balance of my 

time. 

Mr. PALLONE. I thank the gentleman. The gentleman from New 

York, Mr. Engel. 

OPENING STATEMENT OF HON. ELIOT L. ENGEL, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF NEW 

YORK 

Mr. ENGEL. Thank you, Mr. Chairman, for holding this important hearing on the Ryan White CARE Act reauthorization. The 

Ryan White CARE Act holds very special significance to my State, 

New York, we are, unfortunately, home to 16 percent of the Nation’s AIDS population. And so New York remains the epicenter of 

the HIV/AIDS crisis. New York has nearly 120,000 residents living 

with HIV/AIDS, and our State and cities have been proud to partner with the Federal Government in providing care for many of 

these individuals. New York State receives more than $300 million 

in Ryan White funds under all parts of this Act to provide a range 

of health care and support services. Through Ryan White programs, 22,000 uninsured New Yorkers receive medications and ambulatory care services, and thousands more receive other essential 

services such as mental health, case management, nutrition and 

treatment and support services. 


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These individuals must be guaranteed uninterrupted access to 

these vital services. It is critical that Congress act swiftly on the 

reauthorization of the Ryan White Reauthorization Act, which nationwide provides lifesaving medications, health care and support 

services to over half a million people. As you know, unlike most reauthorizations, Congress inserted a sunset provision into the Act in 

2006, requiring congressional action by September 30 of this year, 

2009. Without action, this important program will be terminated 

and care will be jeopardized. 

While 3 years ago, this reauthorization was the subject of much 

disagreement and dissent—and I remember because I was in the 

middle of it—we are in a different place today. Fortunately, Members on both sides of the aisle and more than 250 organizations in 

the U.S. have worked hard over the past year to develop legislative 

principles where there is much agreement. The committee draft 

proposal is for a 3-year reauthorization of the Ryan White HIV/ 

AIDS Treatment Modernization Act. While some might ask why we 

again are working to reimplement relatively short reauthorization, 

there is good reason. The 2006 reauthorization took effect in 2007 

and included several significant changes that have not yet been 

fully implemented or assessed. In addition, greater policy discussions likely to impact the program such as the development of a 

national AIDS strategy and broader health care reform are underway. Indeed, the health reform legislation that we are continuing 

to develop once fully implemented will have a profound effect on 

our ability to provide access to health care and prevention services 

to individuals with HIV/AIDS nationwide. 

As currently drafted, we will reform the private insurance market and end the practice of excluding beneficiaries for pre-existing 

conditions. We will reform Medicaid by allowing early treatment 

for individuals with HIV before they are disabled by AIDS in the 

first 3 years of enactment and will, in fact, expand the Medicaid 

eligibility to cover low-income childless adults. 

I am proud of the work I have done with you, Mr. Chairman, and 

others to ensure that. Long term we will create exchanges for the 

purpose of insurance with subsidies for low-income individuals; and 

finally, we will close the Medicare Part D donut hole over time. 

While these are significant changes in the health care delivery system, we will still need the Ryan White program, which remains the 

payer of last resort, to address unmet needs and services, particularly over the next 3 years. 

In conclusion, Mr. Chairman, I want to commend you. I want to 

commend you for the draft bill which addresses many of the points 

raised in the community consensus document as well as the specific 

concerns of my home State. While there are some issues related to 

rebates and grant funding that I will continue to work with the 

Chairman on prior things to mark up, I support the draft bill and 

look forward to the discussion today. Again, Mr. Chairman, I want 

to emphasize our thanks to you, because you have been such an 

important integral player in this and have been so supportive that 

we really need to publicly thank all the work you have done. I yield 

back. 

Mr. PALLONE. Thank you. The gentlewoman from Tennessee, 

Mrs. Blackburn. 


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OPENING STATEMENT OF HON. MARSHA BLACKBURN, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF TENNESSEE 

Mrs. BLACKBURN. Thank you, Mr. Chairman. I appreciate the 

hearing that we are having today and want to welcome our witnesses. In 2006, my colleagues and I passed what I think was a 

thoughtful bipartisan reauthorization of the Ryan White CARE 

Act. The reauthorization has proven very successful in the Tennessee HIV/AIDS community and has assisted more than 7,800 

low-income Tennesseans with medical services, medications, dental 

service, drug abuse, mental health and related health care needs. 

The Ryan White program provides an important safety net in assisting the underinsured in keeping health insurance and provides 

care to the uninsured. The program reinforces the fact that keeping 

people on private insurance provides great benefit to the individual 

and to the community. We have seen success with this program. As 

we move forward with the Ryan White reauthorization, it is imperative that this committee work in a bipartisan manner to best 

serve the recipients of this program and to meet their needs. Congress needs to be good stewards of Federal funds. Our constituents—if we have learned anything in August, what we have 

learned from our constituents is that they see it as an imperative, 

and so should we, that we be good stewards of the Federal funds 

and that we place appropriate funding and spending limits in place 

and not open-end those authorizations. Access to care is one of the 

biggest concerns among my constituents. 

There are real problems in health care, but what we know is replacing private care with a government bureaucrat won’t increase 

access and it will not fix our health care system. In Tennessee via 

the TennCare program, we have learned that lesson the hard way. 

My constituents also want us to spend less money to fix the problems that exist in health care, and my colleagues on this side of 

the aisle have joined me in offering plans for doing that. My constituents are telling us repeatedly that they do not want another 

$800 billion in higher taxes for a government-run plan that is not 

going to make health care better or cheaper or more available. 

They realize that there are issues that need to be addressed. Just 

as they realize there are programs that have worked in a bipartisan manner, and as we look at the Ryan White CARE Act, which 

has worked when appropriately addressed, my hope is that we are 

going to begin to start forward on a new path and that we will approach these issues working together in this committee. I thank 

the Chairman. I yield back. 

Mr. PALLONE. Thank you. The gentlewoman from California, Ms. 

Harman. 

OPENING STATEMENT OF HON. JANE HARMAN, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF CALIFORNIA 

Ms. HARMAN. Thank you, Mr. Chairman. I choose to be an optimist, and I think the fact that this committee is basically together 

on the importance of the Ryan White Act may be a good omen for 

the health care fights in the next few weeks. It is crucial that we 

stay together on this cause and that we consider carefully the discussion draft which will be part of a hearing today—we are having 


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a hearing in this committee—and resolve quickly what changes we 

want to make to that draft and enact it, hopefully on a—report it 

hopefully on a bipartisan basis. When we talk about HIV and 

AIDS, it is easy to forget the very human face of the disease. It has 

had a profound impact on the lives of many of my constituents and 

friends, and I am sure everyone on this committee can tell stories 

like this. But one of them was particularly well known. Elizabeth 

Glaser touched my life deeply. She contracted AIDS in a blood 

transfusion which she got giving birth in 1981, and unknowingly 

transmitted the virus to that child and to her subsequent child. 

When she became deathly ill with the disease, she dedicated her 

life to raising awareness of pediatric AIDS, and a foundation bearing her name raises millions of dollars to help others. 

So it is with Elizabeth in mind that I urge prompt action on the 

discussion draft. This program provides critical medical care and 

support services to people with HIV/AIDS across the country, and 

it is especially important to metropolitan areas like Los Angeles 

County which has the second highest number of HIV/AIDS patients 

in the country. Ryan White spends about $35 million a year to help 

provide 25,000 Angelinos with care. The program is truly a safety 

net. It is a payer of last resort. So it only picks up the costs after 

other sources of funding are exhausted. It helps the neediest patients, as has been pointed out. A third of them have no insurance 

and more than half are underinsured. In the current economic climate, this care is absolutely a matter of life and death. Faced with 

a budget shortfall, California was forced to cut some of its funding 

for HIV/AIDS; and moreover rising unemployment and the growing 

ranks of the uninsured means more and more people are turning 

to this program for help. I will skip the examples. We all know 

what they are. For all the good it does, Ryan White comes at a relatively low cost. It represents less than 10 percent of Federal HIV/ 

AIDS spending. I strongly urge that we pull together on a bipartisan basis and do the right thing and that is to enact the discussion draft I think close to its present form, but if small changes are 

needed to be made, let’s make them on a bipartisan basis and get 

on with it. I yield back the balance of my time. 

Mr. PALLONE. Thank you. The gentlewoman from Florida Ms. 

Castor. 

OPENING STATEMENT OF HON. KATHY CASTOR, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF FLORIDA 

Ms. CASTOR. Chairman Pallone, thank you very much for convening this timely hearing to address the discussion draft that will 

reauthorize the Ryan White initiative. I look forward to the expert 

testimony today. We must act expeditiously because we are facing 

sunset and so many of our neighbors living with HIV and AIDS are 

depending on us. In my home State of Florida, the Ryan White initiative has prolonged the lives of many men and women affected 

by this devastating disease. In 2004, Ryan White assisted well over 

100,000 patients and nearly 13,000 family members of people living 

with HIV and AIDS, and those numbers unfortunately continue to 

rise. The stories of the impact that the Ryan White initiative has 

had on my neighbors exemplify the strength of human nature to 

persevere and to meet adversity head on. 


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I would like to share with you two short stories from back home 

in Florida, stories that display the life-changing impact that Ryan 

White has had on many lives. Christopher from Florida says, I was 

diagnosed with HIV back in the summer of 2000 and I was fresh 

out of college with no health insurance. It was only through government-assisted programs that were funded largely by the Ryan 

White initiative that I was able to have checkups and blood work 

done. I was a patient at Pinellas Care Clinic in St. Petersburg, 

Florida. I have since begun working and have had insurance for 4 

years but could not have gotten through those 5 years without the 

assistance of the Ryan White initiative. Mary from Florida relayed 

to me, I have lived with HIV/AIDS since 1990. When I became ill 

in December 2008, I had to leave my part-time job. With copayments on medications and medical visits, I was at the point of 

choosing to eat or stop taking medical services. After contacting a 

Ryan White case management agency, I was helped out with financial assistance. 

I can honestly say if Ryan White had not been in place, I believe 

I would be dead. There are many like myself here in the United 

States who need just a little help to continue to be productive 

members of society. Mr. Chairman, the Ryan White initiative is the 

only true lifeline for many people living with HIV/AIDS, many of 

whom are oftentimes barred from private health insurance. So I 

strongly urge the committee to move quickly to update and reauthorize Ryan White before the September 30 sunset date. I yield 

back my time. 

Mr. PALLONE. Thank you. The gentleman from Texas, Mr. Green. 

OPENING STATEMENT OF HON. GENE GREEN, A 

REPRESENTATIVE IN CONGRESS FROM THE STATE OF TEXAS 

Mr. GREEN. Thank you, Mr. Chairman, for holding the hearing 

today on the discussion draft of the Ryan White CARE Act. Since 

its establishment in 1990, the Ryan White CARE Act has delivered 

much needed funding to States and urban areas with large numbers of individuals living with the AIDS virus. More than half of 

the Americans living with AIDS live in five States: New York, California, Florida, New Jersey and my home State of Texas. Unfortunately in my State of Texas, the number of individuals living with 

HIV and AIDS increased in the last 10 years. With two eligible 

metropolitan areas and three transitional grant areas in our State, 

Texas relies on Ryan White dollars to provide quality life-prolonging care to Texans living with HIV and AIDS. In fact, Ryan 

White funding helped to provide critical care and support services 

to more than 18,000 in 2006. My hometown of Houston is currently 

the eighth largest EMA in the Nation with approximately 10,000 

individuals living with AIDS, according to the CDC statistics. In 

the community of Harris County, our hospital district utilizes more 

than $26 million each year to coordinate essential health care and 

support service. There are 21,000 individuals in our community living with HIV and AIDS. The importance of the program cannot be 

underestimated. Without CARE Act funds many Americans living 

with HIV and AIDS would have no other source for treatment. The 

last time we reauthorized the CARE Act in 2006, we had quite a 

battle. And I am pleased nearly 300 HIV/AIDS groups came toVerDate Mar 15 2010 08:41 Aug 02, 2012 Jkt 074093 PO 00000 Frm 00021 Fmt 6633 Sfmt 6602 E:\HR\OC\A093.XXX A093

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gether across the U.S. to give this committee unified recommendations on the provisions to be included in the reauthorization of this 

bill. Many of their recommendations have been addressed in this 

draft. Our office has been in contact with several local HIV/AIDS 

organizations to ensure Texas will continue to be able to access the 

critical care services provided by the CARE Act in this draft and 

we look forward carefully at several provisions in the draft. 

Texas was held harmless in fiscal year 2009. Its base funding 

was held at 95 percent of 2006 levels even though the award would 

have declined more if based solely on case counts. Section 5 of the 

discussion draft allows a hold harmless funding to continue and 

eliminates the need for repeated legislative action by including this 

funding in the baseline appropriations request. 

We heard from groups in Texas about the need to include a fix 

for ADAP rebates and unobligated funds. Section 6 and 7 of the 

discussion draft takes steps to ensure that States will give some 

flexibility with unobligated funds from its program. Unobligated 

funds must be returned unless a waiver is granted, but the ability 

to have some flexibility in the section is important. Thus far, the 

committee has been working on a bipartisan basis on the discussion draft, and I hope we will continue to work together and quickly move the Ryan Act reauthorization out of our committee. 

As we know, the current legislation expires September 30, so we 

have a very limited amount of time to ensure funding continues to 

this program. I yield back my time. 

Mr. PALLONE. Thank you. Our vice chair, the gentlewoman from 

California, Mrs. Capps. 

OPENING STATEMENT OF HON. LOIS CAPPS, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF CALIFORNIA 

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

the subcommittee is meeting on this very important subject. I 

thank the panelists in advance for being here today and for the testimony you will be giving. The reauthorization of the Ryan White 

CARE Act is a critical issue for this committee, for the HIV/AIDS 

community and indeed for our entire country. I look forward to a 

productive discussion today about how we can focus on the ways 

we can strengthen the CARE Act so that it continues to meet the 

health needs of persons living with the HIV disease and their families, especially as they are living longer, which is a good thing. 

This issue is especially important to my home State of California, 

as my colleagues who are from the same State are here as well, 

which has the second largest disease burden in the United States 

and a significant number of new cases each year, particularly 

amongst the Latino population. As you know, California is experiencing a severe budget crisis. State AIDS funding has been drastically reduced. My constituents and all those affected across the 

State need this assistance from Ryan White more than ever. Too 

often their livelihood and that of their families depends on this 

care. I want to associate myself with the remarks of my colleague 

from Texas, Dr. Burgess. As one who also represents portions of a 

rural area, three mid-sized counties on the central coast of California, I am concerned funds are disproportionately assigned to 

more urban areas. 


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I represent the main source of HIV services between Los Angeles 

and San Francisco, and I want to ensure that central coast providers have what they need to provide resources. September 30 will 

be here before we know it. We must act now to reauthorize this legislation. I am interested to hear from our panelists today about 

how we can work together, and we can work together in a bipartisan way I believe on this committee to ensure that the thousands 

of members of our HIV community in California and across the 

country continue to receive health care and support services. 

Thank you for your testimony. I look forward to hearing it. I yield 

back. 

Mr. PALLONE. Thank you. The gentlewoman from California, Ms. 

Eshoo. 

OPENING STATEMENT OF HON. ANNA G. ESHOO, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF CALIFORNIA 

Ms. ESHOO. Thank you, Mr. Chairman, for holding this hearing 

today and for your leadership on this issue, which is such an important one to people across the country in every single community 

that have been diagnosed with HIV/AIDS and what the Ryan 

White CARE Act represents to them. It is a very, very important 

effort that has worked. It has received bipartisan support from the 

Congress. It has provided billions of dollars and most importantly, 

it has helped to not only improve lives, save lives but extend lives 

of our fellow citizens. 

So I am pleased that this reauthorization is a priority for the 

committee, obviously, as it is for me. When we reauthorized the Act 

3 years ago, I thought that the legislation failed to uphold the tradition of the original legislation because it created a system of what 

I termed winners and losers in the allocation of Federal resources. 

At that time, I offered an amendment in committee with several of 

my colleagues from the California, New York and New Jersey delegations to increase the overall authorizations in the bill and to extend the hold harmless provisions of the bill by 2 years to ensure 

that the historic epicenters of the disease do not experience precipitous declines in funding levels from year to year. 

Unfortunately, our amendment was defeated by a single vote. 

Now this sounds like the old formula fights which brings out, I 

guess, maybe in some ways, the worst in Congress, but they are 

fought really hard. But there is a human face to this; and so if the 

funding is not at the appropriate levels and distributed appropriately, there are human beings that fall through the net and they 

are hanging on as it is. If not for the stop gap funding during the 

past two appropriations cycles and the fiscal year 2010 bill, my district and very importantly, the State of California, the largest in 

the Nation would have lost millions of critical dollars to help those 

living with AIDS and HIV and who were the most in need. 

So I look forward to reauthorizing this bill at appropriate funding levels, including the hold harmless provision, so that States 

will not experience destabilizing shifts in funding from year to 

year. People can’t live that way, and so the funding should not be 

set up that way. My thanks to the witnesses that are here today 


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for your incredible work that I think our entire country is grateful 

to you for. 

Thank you again, Mr. Chairman, for bringing this up, and I look 

forward to a really solid, fair, well-funded bill so that all of the 

promise that Ryan White CARE Act holds will really reach all the 

people that it was originally intended to. Thank you. 

Mr. PALLONE. Thank you. The gentleman from Maryland, Mr. 

Sarbanes. 

OPENING STATEMENT OF HON. JOHN P. SARBANES, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF MARYLAND 

Mr. SARBANES. Thank you very much, Mr. Chairman. It is a 

privilege to be able to consider this bill today. And thank you for 

bringing the draft to us. This is an absolutely critical reauthorization that we are considering. You know, nothing says more about 

who we are as a Nation than the way we step forward and respond 

to the needs of those who are living with HIV and AIDS. So this 

Ryan White CARE Act and the reauthorization of it is critical to 

who we are as a Nation. It bears repeating. I think Congressman 

Green mentioned this, but there are nearly 300 organizations 

across the country who have worked together to form a consensus 

about what the recommendations should be and what should be included in this reauthorization. 

I want to salute every single one of those organizations for their 

work. That is an incredible level of advocacy and collaboration. It 

is why we are able to move this kind of legislation forward and it 

represents the best in terms of partnership between advocacy 

groups and people who are on the ground dealing with issues out 

there and those of us who are in Congress trying to respond. We 

are on a tight timeline, of course that has been alluded to. My hope 

is that we can work in a bipartisan fashion to get this legislation 

done so that we don’t hit this hard sunset that we are concerned 

about. I think that can happen, and obviously starting right today 

as we begin our September business, starting with this issue puts 

us on the road to getting that done by the end of September. 

I do want to mention that Maryland has been hard hit by HIV 

and AIDS, Baltimore in particular, which is part of my district. 

There are some tremendous organizations throughout the State 

and in the city of Baltimore who have been working for many, 

many years to address these concerns. There is a group here today, 

Life Link, and actually I would like you to raise your hands just 

so people can see how many of you are out there. That is the kind 

of advocacy that has brought forward this kind of legislation, and 

I want to salute everybody who made the trip over to be at this 

hearing. I look forward to the testimony of the witnesses. I look forward to moving this bill in a timely way, and I yield back my time. 

Mr. PALLONE. Thank you. The gentlewoman from Ohio, Ms. Sutton. 

OPENING STATEMENT OF HON. BETTY SUTTON, A 

REPRESENTATIVE IN CONGRESS FROM THE STATE OF OHIO 

Ms. SUTTON. Thank you, Chairman Pallone, for holding this important hearing on the reauthorization of the Ryan White CARE 


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Act. Since it was passed in 1990, the Ryan White CARE Act has 

provided critically needed help to States and communities to provide treatment and services for individuals stricken with HIV and 

AIDS. This legislation, as we have heard, provides Federal funds 

to cities and States to ensure that necessary medical HIV and 

AIDS treatment can be given to all individuals, regardless of their 

race, age or social standing. We should be clear, Mr. Chairman, 

that AIDS is still epidemic in this country. According to the District’s HIV/AIDS Administration in Washington, D.C., a reported 3 

percent of District residents right outside of these committee doors 

are living with HIV and AIDS. 

As a matter of perspective, in this one city alone, that rate is 

higher than in West Africa. But we have a chance this month to 

offer continued protection to one of our Nation’s most vulnerable 

populations, those living with HIV and AIDS. Those who are stricken with HIV and AIDS often live in urban areas and have trouble 

accessing the health care system. 

In 2008, Ohio ranked the 14th highest among the 50 States in 

cumulative reported AIDS cases. One of the hardest hit areas of 

the State is Cuyahoga County, part of which I represent. And last 

year there was a decrease in the number of new AIDS cases in the 

county, and that is good news but we cannot become complacent. 

Unfortunately in 2008, the county saw a slight increase in new 

HIV cases, and the disease continues to take a disproportionate toll 

on minority populations. While African Americans make up 29.3 of 

the Cuyahoga County population, they make up 56 percent of reported persons living with HIV and AIDS in the county. The Minority AIDS Initiative was created in 1998 by Congress and the administration to address this very problem. 

The minority AIDS initiative has been a positive program and I 

look forward to hearing the results of the GAO report on this subject. We must continue to give our States and communities the 

funding they need to help those who have the disease. We must 

also increase education and outreach to prevent the spread of HIV 

and AIDS. The discussion draft we will review today makes some 

important changes that will strengthen the Ryan White CARE Act, 

and I am proud that the HIV and AIDS care community of Ohio 

supports this legislation and the discussion draft. I look forward to 

the testimony. I thank all of you who are here and for the work 

not only that you are here to do in this committee room, but I know 

that you are throughout our communities and our country. I yield 

back. 

Mr. PALLONE. Thank you. The gentleman from Georgia Mr. Barrow. 

Mr. BARROW. I thank the Chair. I will waive an opening. 

Mr. PALLONE. Thank you. The gentlewoman from the Virgin Islands, Ms. Christensen. 

OPENING STATEMENT OF HON. DONNA M. CHRISTENSEN, A 

REPRESENTATIVE IN CONGRESS FROM THE VIRGIN ISLANDS 

Mrs. CHRISTENSEN. Thank you, Mr. Chairman. Thank you in particular, Chairman Pallone, for turning to the Ryan White CARE 

Act as soon as we got back, as you promised in July. This is too 

important a program to get lost as we battle for health care reform. 


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The September deadline looms large, and we have to act. Without 

action before the end of this month, this program, which has been 

a real lifeline to so many individuals and families in my district 

and all across our country, would be lost entirely. And that cannot 

happen. But one thing, I would have preferred to do a continuing 

resolution that would take us into mid next year and then do a 

more thorough job of reauthorizing the Act in 2010. There are important decisions and changes to be made to ensure that the benefits of this program reach those most in need and that it is adequately funded. In recent years, programs have been scraping by. 

ADAP waiting lists have left too many without care, and minority 

communities have not been developing the capacity we envisioned 

when we created the Minority AIDS Initiative. I also feel that there 

are some stakeholders who have not been adequately heard from. 

But the Ryan White program is also too important a program to 

allow it to become a political football in an election year. So after 

we protect the program from being eliminated, as per the sunset 

clause that was included in the last authorization, we will probably 

just have to kick the ball down the road a little longer just to keep 

the program on life support. But Mr. Chair and colleagues, I hope 

that this is the last time that we do this because we don’t have 

adequate data, because reporting systems are not mature enough 

or because we are afraid to make the tough decisions to redirect 

the funding where it is most needed. 

Before I close, I want to remind everyone that people of color are 

71 percent of new AIDS cases and 67 percent of people living with 

HIV and AIDS, that African Americans are the hardest hit, and African American women in particular. So addressing these vulnerable populations must be a central part of Ryan White moving forward. This means a strong Minority AIDS Initiative that provides 

not only adequate resources but technical assistance and a return 

to its original intent of building capacity. We also need to address 

the exploding numbers of hepatitis B and C infections and to do 

more to stem the spread of HIV infections in incarcerated populations and from ex-offenders into their home communities. I would 

like to welcome and thank our witnesses today. I hope we can fit 

in a follow-up hearing from where we can hear from some of the 

communities most affected by AIDS and the organizations that 

have been working to serve them. I yield back the balance of my 

time. 

Mr. PALLONE. Thank you. The gentleman from Connecticut, Mr. 

Murphy. 

OPENING STATEMENT OF HON. CHRISTOPHER S. MURPHY, A 

REPRESENTATIVE IN CONGRESS FROM THE STATE OF CONNECTICUT 

Mr. MURPHY OF CONNECTICUT. Thank you, Mr. Chairman, for 

holding today’s hearing on this discussion draft. And thank you so 

much to the numbers of advocates, people living with HIV/AIDS 

and people caring for them are here. It wasn’t so long ago where 

people that were living with the disease, people that were caring 

for those that had the disease felt pressure to live that life do that 

work in the shadows. And it says a lot about this Congress and this 

country and society that you now are at the forefront of advocating 


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for a strong reauthorization of this law. In Connecticut, this program just has been critical to providing low-income individuals 

with the medical and support services that they need. Without this 

funding, millions of Americans and thousands of my constituents 

would struggle to find that cutting-edge medical service that has 

been increasingly successful in treating the disease. But to say that 

the transition through the last reauthorization of the program in 

Connecticut has been rocky would be an understatement. 

Since the 2006 reauthorization, the Connecticut delegation and 

those responsible for administering the program in the State have 

gone round and round with HRSA and the court system to ensure 

that the State’s largest communities, in particular, New Haven and 

Hartford, which both actually exist outside of my district, received 

adequate funds through the program and were treated fairly 

through the interpretation of the law. The resulting congressional 

and legal battles have resulted in favorable treatment for Connecticut. But I am sure it is the preference of everyone involved to 

ensure that this current reauthorization does not result in the battles of the last 3 years being played out again in Connecticut, in 

California or in other parts across this country. That is why, along 

with Representative Eshoo and others on the committee, I am encouraged that the draft legislation provides for the continuation 

and expansion of the law’s hold harmless provisions, well addressing once and for all the need for a continued stop loss funding for 

jurisdictions that without it could face significant yearly funding 

decreases. Mr. Chairman, I am thrilled that we haven’t wasted 24 

hours on our return to Washington in getting started with this reauthorization. I am pleased to be here for this hearing and look forward to the testimony of our witnesses. I yield back. 

Mr. PALLONE. Thank you. The ranking member of our full committee, Mr. Barton. 

OPENING STATEMENT OF HON. JOE BARTON, A 

REPRESENTATIVE IN CONGRESS FROM THE STATE OF TEXAS 

Mr. BARTON. Thank you, Mr. Chairman. I am glad that you are 

still doing opening statements. I am going to submit my formal 

statement for the record and just make a few remarks. First of all, 

I am glad that you are holding this hearing. Congressman Deal 

and myself brought up the Ryan White Reauthorization Act in the 

markup on the health care bill back in August. You and Chairman 

Waxman said that it was something needing to be done. And here 

we are. So that is good. We have looked at the draft bill. There are 

some good things in the bill. We like the fact that it is a 3-year 

reauthorization. That is a good thing, that it is not open ended. 

There are some bad things, some things—you know, the fact it is 

open ended in terms of the appropriations, some of the 

grandfathering provisions. 

But having a bill before us, having a legislative hearing, being 

willing to do this are all good signs. Even though this is an opening 

statement, my question to you, Mr. Chairman, do you plan and 

Chairman Waxman plan on moving a bill fairly quickly or is this 

more of a get-input hearing? 

Mr. PALLONE. We do plan to move a bill but not before we get 

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ate. But we realize that we have this October 1 deadline. So we 

would like to move quickly. 

Mr. BARTON. OK. Thank you, Mr. Chairman. And I think I can 

speak for all the Members of the minority, we are very willing to 

work in an expedited time frame. We do hope it is an open process 

and we are allowed to input into the system before the decisions 

are made. Thank you, Mr. Chairman. 

Mr. PALLONE. Thank you. I think that concludes our opening 

statements. So we will move now to our witness. If you will come 

forward, we have one witness on our first panel who is Dr. Mary 

Wakefield, who is administrator for the Office of the Administrator, 

the Health Resources and Services Administration. Did I get that 

right? 

Ms. WAKEFIELD. You did. 

Mr. PALLONE. The second person is just there to help, not to testify, I understand. 

We, as you know, have 5-minute opening statements. They become part of the record. So I would now recognize you for 5 minutes. Thank you. 

STATEMENT OF MARY WAKEFIELD, ADMINISTRATOR, HEALTH 

RESOURCES AND SERVICES ADMINISTRATION, UNITED 

STATES DEPARTMENT OF HEALTH AND HUMAN SERVICES 

Ms. WAKEFIELD. Mr. Chairman, members of the committee, 

thank you for the opportunity to appear before you today to address reauthorization of the Ryan White HIV/AIDS program administered by the Health Resources and Services Administration 

within the Department of Health and Human Services. In addition, 

I would like to thank the Chairman, members of the committee and 

their staffs for all of their hard work on this very important legislation. Let me start by expressing the administration’s strong support for continuation of the Ryan White program and its reauthorization. It is a key component of our Nation’s fight against HIV/ 

AIDS. Before I begin my testimony, I would like to announce that 

today the Centers for Medicare & Medicaid Services has released 

a new proposal to cover voluntary HIV infection screening for 

Medicare beneficiaries who are at risk for infection and for women 

who are pregnant. Today’s proposed decision would allow high-risk 

Medicare beneficiaries to learn of their HIV status anytime by requesting an HIV screening test and, if necessary, seek appropriate 

counseling and therapy. I know you will look forward to hearing 

more about this new plan in the weeks to come as CMS accepts 

public comments and issues its final coverage decision. The Department of Health and Human Services is committed to helping promote the President’s strategy to bring an end to the domestic HIV 

epidemic in this country, and this new proposal will allow those 

who may be at risk of infection to find out quickly and early so that 

they can start getting treatment. 

Ryan White provides critical medical care and support services to 

uninsured, underinsured and low-income people living with HIV/ 

AIDS who have no other source of care. Through HRSA’s HIV/ 

AIDS Bureau, grants are awarded to cities, States and local community-based organizations for the purpose of providing primary 

medical care and support services to individuals living with HIV/ 


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AIDS. I saw this firsthand on my very first site visits as administrator to Ryan White grantees in Chicago and Philadelphia. There 

I observed the difference these programs make in patients’ lives. 

With this in mind, I would like to talk broadly about the administration’s vision for reauthorizing this program. 

Since its inception in 1990, the Ryan White program has been 

providing HIV-related care to a growing number of infected individuals. This year, approximately 529,000 individuals will receive 

Ryan White services. The program consists of parts A, B, C, D and 

F, which are differentiated by the types of services rendered and/ 

or by the entities receiving funding. 

HRSA recommends a 4-year reauthorization to minimize disruption of funding and services for grantees and clients and to permit 

time for the implementation of health care reform policies and programs to examine the impact on Ryan White. The administration 

would also support a 3-year reauthorization consistent with the 

draft House bill. In addition, HRSA supports the language proposed in the Energy and Commerce draft legislation to eliminate 

the repeal language that was part of the last reauthorization. Presently, parts A and B grantees are subject to three different penalties if they have unused funds remaining by the end of the grant 

year. First, barring a waiver for formula funds, grantees must return any unspent formula and supplemental funds to HRSA at the 

end of the grant year. 

Second, grantees with more than 2 percent of unobligated formula funds at the end of the grant year will receive a reduction 

in their subsequent grant. Third, grantees with more than 2 percent of unobligated formula funds cannot apply for supplemental 

funds for the subsequent grant year. HRSA encourages amending 

these penalties for parts A and B grantees because of the financial 

and administrative burden it places on them. HRSA suggests eliminating the penalty that requires a decrease in a grantee’s subsequent grant award by an amount equal to the unobligated balance 

remaining from the current year’s award. The elimination of this 

provision helps to ensure that grantees will have sufficient funds 

so they will not have to interrupt service to individuals living with 

HIV/AIDS. 

In addition, HRSA recommends raising the threshold from 2 percent to 5 percent for the penalty. It prevents grantees from receiving supplemental funds when they have unobligated formula funds. 

Both of these provisions are contained in the committee’s current 

draft, and we are appreciative of their inclusion. HRSA also suggests offsetting future year awards for grants with unobligated balances as opposed to cancelation of the amount. The change from a 

deobligation to an offset would retain the intent of the law while 

simplifying penalty administration and expediting the redistribution of funds to other grantees to provide HIV/AIDS care. HRSA 

supports eliminating the distinction between EMAs and TGAs 

under part A. HRSA proposes designating part A grantees as 

EMAs when those grantees have greater than or equal to 1,000 

cases of AIDS during the most recent period of five calendar years 

for which such data are available. 

By eliminating the EMA/TGA distinction, the appropriation for 

part A could be distributed proportionally across all highly imVerDate Mar 15 2010 08:41 Aug 02, 2012 Jkt 074093 PO 00000 Frm 00029 Fmt 6633 Sfmt 6602 E:\HR\OC\A093.XXX A093

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pacted jurisdictions based on the number of living HIV/AIDS cases. 

This suggestion is supported by Energy and Commerce’s draft legislation. 

Moreover, for the transition grant areas that are at risk of losing 

TGA status in future fiscal years, HRSA supports efforts to maintain part A award levels so that important HIV/AIDS services in 

those jurisdictions are not interrupted. This recommendation is reflected in the Energy and Commerce draft legislation. 

Six transitional grant areas are at risk of losing their status 

under part A in fiscal year 2011 due to their inability to meet the 

definition of a TGA based on AIDS case counts. HRSA is eager to 

work with you to resolve this issue. 

We are over a quarter-century into the HIV/AIDS epidemic. With 

my background as a nurse and as a nurse educator, I know how 

important it is for us to train a new cadre of HIV health professionals to replace the first wave of experts that are nearing retirement. We also need a new generation of health care workers to 

meet the difficult clinical challenges that are emerging in a world 

where HIV infection, with treatment, is managed as a chronic condition. HRSA suggests implementing a program for AETC participants that provides training of sufficient duration to ensure that 

new health professionals are appropriately trained to provide HIV 

care and are strategically placed in areas with high need of HIV 

medical care. 

Finally, HRSA proposes to permit additional time for code-based 

reporting States to transition to name-based reporting systems for 

living HIV/AIDS counts, upon which funding is based. Under current law, the exception for code-based reporting will expire at the 

end of fiscal year 2009 and, as of fiscal year 2010, all jurisdictions 

must report name-based data. Nine jurisdictions are still in the 

process of converting to named-based reporting systems. Without 

an extension, these code-based reporting States will be unable to 

receive funding after fiscal year 2009, which will disrupt services 

to patients with HIV/AIDS in those areas. We are appreciative of 

this being included in the draft legislation. 

In summary, I want to acknowledge the dedication of the advocacy community, its work on the consensus document, and its incredible commitment to those individuals with HIV/AIDS. The 

Obama administration is committed to working with you, with 

Congress, to reauthorize the Ryan White program and to ensure 

that critical services continue beyond September 30, 2009. I would 

be pleased to answer any questions you might have concerning the 

reauthorization of the Ryan White HIV/AIDS program. 

Thank you. 

[The prepared statement of Ms. Wakefield follows:] 


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Mr. PALLONE. Thank you, Doctor. 

We are going to have questions from the members of the committee. Basically, we allow 5 minutes for each member. And I am 

just going to recognize myself initially. 

The Ryan White program is one that OMB has rated as highly 

effective. And I am sure HRSA will continue its good work in administering it, and I want to thank you for that. 

You said that the administration supports at least a 3-year extension. I think you actually mentioned 4, but you could live with 

3. Would you tell us why that is the case? In other words, what 

would be the impact on grantees if we only had a shorter extension, you know, 1 or 2 years? Why are you saying 3 or 4? 

Ms. WAKEFIELD. We are asking for a longer reauthorization because we think that it will provide greater stability for the program. And it would also provide us with additional time to evaluate the impact of changes that might be made to the program, and 

so those changes that would be affecting grantees. 

Also, we would have with that additional time more mature 

names-based surveillance systems in place and time to evaluate the 

impact of health care reform policies and programs and their implications for Ryan White. 

Mr. PALLONE. OK. Well, my second question is about this codebased versus name-based. And I know you mentioned it several 

times there towards the end of your testimony. 

CDC’s recommendation to the States is that they collect surveillance data from the States on a confidential names-based basis. 

But today, all States are in fact collecting names-based data, but 

their systems are at different stages, as you mentioned. Some have 

been collecting names-based data for enough years that CDC has 

deemed their systems mature. Others are still transitioning from 

earlier code-based systems. 

Now, under the current law, States can still report code-based 

data if their names-based system isn’t fully ready to accurately reflect HIV in the State. But how does HRSA account for the fact 

that code-based data may contain redundancies? 

Ms. WAKEFIELD. Well, you are right, there are redundancies in 

code-based data. And so the way that is accounted for is through 

a 5 percent reduction that is taken in the counts of the cases, so 

taken in case counts that are reported from code-based systems. So, 

5 percent reduction taken in case counts that are reported through 

code-based systems. 

Mr. PALLONE. Is there any other penalty with regard to these 

code-based States? 

Ms. WAKEFIELD. Yes, there is a 5 percent cap on the increase of 

a grant award for subsequent grant awards. So, yes. 

Mr. PALLONE. Now, have these penalties actually been applied to 

States that are still reporting, you know, some of the HIV cases as 

code-based? 

Ms. WAKEFIELD. Yes, sir, they have. 

Mr. PALLONE. And, I mean, I understand that the penalties help 

motivate States as they transition to the name-based reporting, 

and so that is why you have them. 

Now, the discussion draft would maintain current law for codebased reporting so the States continue their progress to nameVerDate Mar 15 2010 08:41 Aug 02, 2012 Jkt 074093 PO 00000 Frm 00041 Fmt 6633 Sfmt 6602 E:\HR\OC\A093.XXX A093

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based reporting, you know, would still be able to progress. But is 

it your understanding that the eight jurisdictions still using the 

code-based reporting are making enough progress towards this 

fully name-based system, or should we be doing something else to 

encourage it? 

Ms. WAKEFIELD. We believe that all States that are still operating with code-based reporting are making the necessary changes 

and have a commitment to transition fully to name-based reporting. 

And, as you indicated, their systems are still in a process of maturing, and those jurisdictions are at different places in the evolution of their systems. But, yes, we are in contact with them, and 

we feel that they have commitment to continuing forward. 

Mr. PALLONE. So you want to continue this policy of having certainly penalties but still allowing them to use the old system, at 

least temporarily. 

Ms. WAKEFIELD. Yes, that is correct. 

Mr. PALLONE. OK. 

Now, I don’t think you mentioned the severity-of-need index. I 

wanted to mention that. One of the recommendations from the 

community consensus, and it is also in the discussion draft, is to 

clarify that HRSA should not yet begin implementation of the severity-of-need index. 

The 2006 reauthorization required HRSA to develop an index 

that could allow for distribution of funds based on concrete factors 

reflecting need. But tell me a little more about this index. I know 

you didn’t mention it, but I would like to know, you know, what 

the idea is. 

Ms. WAKEFIELD. So, in terms of the severity-of-need index, supplemental grants under parts A and B are awarded to areas and 

States that submit applications based on the need in the area or 

State on an objective and quantified basis. Currently, jurisdictions 

submit applications that are scored through an objective review 

process to determine level of need and subsequent funding. 

At Congress’s direction, HRSA contracted with an organization to 

establish an HIV/AIDS severity-of-need collaboration to develop 

this index that you are referencing. The collaboration was comprised of a multi-tiered expert body broadly representative of HHS, 

HRSA staff, national experts, Ryan White program grantees, and 

consumers. 

Based on the Institute of Medicine’s recommendations, there 

were four expert panels that were convened to identify relevant 

data sources and measures that demonstrate need in terms of area 

characteristics, patient coverage and need, associated costs, and so 

on. 

The panels then prepared written reports reviewing more than 

56 variables and forwarded 19 for inclusion in a draft severity-ofneed index. Some of the 19 remaining variables were eliminated for 

reasons such as lack of uniformly high-quality data at the State 

level. 

HRSA and our team that we contracted with has analyzed the 

recommendations of the panels, completed supplemental studies, 

and developed a draft model of severity-of-need index to be applied. 

The index uses data measures comparable across jurisdictions and 


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is based on quantitative measures established from existing national data sources. 

We have also in 2008 contracted to conduct an independent analysis of that methodology. And the independent evaluators concluded that the process that was used to develop that severity-ofneed index was comprehensive but some elements of the formulation failed to meet their intended purposes, so that the index, from 

that perspective, might be modified to better distribute supplemental funding based on need. 

The status of the severity-of-illness index at this point? Well, the 

2007 and 2008 reports are in clearance in the Department, and we 

are working to get those reports to you as soon as possible. 

Mr. PALLONE. OK. Thank you very much. 

Mr. Whitfield. 

Mr. WHITFIELD. Dr. Wakefield, thanks for being with us today, 

and we appreciate your input. 

In your opening statement, you mentioned that there is an HIV 

epidemic in the country today. What is the definition of an ‘‘epidemic,’’ and is there a certain number of cases that you must have 

to be called an epidemic? Would you just clarify that for me, what 

that means? 

Ms. WAKEFIELD. Applied here it is referring to, for us, the care 

that we provide of over 529,000 individuals served through our 

Ryan White AIDS program. 

Mr. WHITFIELD. So if it is over 500,000, it is an epidemic? 

Ms. WAKEFIELD. And greater than a million diagnosed with HIV/ 

AIDS in the United States. 

Mr. WHITFIELD. So, in the United States today, there are over a 

million people that have been diagnosed with AIDS? 

Ms. WAKEFIELD. With HIV or AIDS, yes. 

Mr. WHITFIELD. I was just reading the Kaiser report on the HIV 

program, and it indicated that this number, 500,000 being treated, 

really cannot be totally verified because it may be duplicative. And 

it says specifically that there is no client-level data collection system. 

Is that true, or is that not true? 

Ms. WAKEFIELD. There are duplicate numbers that we try to account for in our funding allocation. So, yes, we know that there is 

some duplication. We do have strategies for trying to correct that 

duplication. 

Mr. WHITFIELD. But is it true that there is no client-level data 

collection system? 

Ms. WAKEFIELD. Oh, we have—— 

Mr. WHITFIELD. To help you out a little bit here, I was reading 

from the Henry Kaiser Family Foundation HIV/AIDS policy fact 

sheet. It says, ‘‘. . . Although it is not possible to obtain an 

unduplicated count of clients because there is currently no clientlevel data collection system.’’ 

Ms. WAKEFIELD. We do have client-level data that we are collecting and have available now, but just effective as of June of this 

year. 

Mr. WHITFIELD. So it went into effect June of this year? 

Ms. WAKEFIELD. Just in the last few months, that is correct, on 

a client-level basis. 


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Mr. WHITFIELD. And that would be nationwide and in the nine 

territories then? 

Ms. WAKEFIELD. Yes, sir. But it is just within the last few 

months. 

Mr. WHITFIELD. OK. But it is in effect now, so we will be able 

to have a more accurate number. 

Ms. WAKEFIELD. Yes, that is correct, going forward. 

Mr. WHITFIELD. OK. 

Now, on the transitional grant area proposal, in the discussion 

draft they are talking about the six transitional grant areas and 

they are asking that they be grandfathered. Now, I am certainly 

not an expert in the Ryan White Act, but it is my understanding 

that in order to obtain a grant you have to meet certain criteria, 

like so many thousand cases in whatever and whatever, which is 

the way it should be done because, with limited dollars, you want 

to go where it is most needed. 

So it would seem to me that if you just automatically grandfather 

six areas because they have had them the last 3 years that you 

might be overlooking or underserving other areas that may need it 

even worse than those six. Do you have any comment on that? 

Ms. WAKEFIELD. We do support continuation of those six, primarily to avoid disruption in services for the individuals currently 

being served and also so that there isn’t an undue burden on areas 

that might be geographically located next to those six areas. 

Mr. WHITFIELD. But, you know, I guess since Ryan White was 

authorized first in 1990, there has always been this process that 

it be a 3-year grant period and then it would be reevaluated. So 

that doesn’t concern you, then, that other areas may be underserved because you are going to allow these to be grandfathered? 

Ms. WAKEFIELD. We are supportive of continuing the inclusion of 

those six areas, yes. 

Mr. WHITFIELD. OK. All right. 

Now, President Obama, like all of us, has expressed great concern about the Federal debt that we have today and the impact 

that that will have on our country. And I would just ask you, this 

legislation also provides open-ended appropriation, ‘‘such sums as 

necessary.’’ And there has been a growth in this program from 

$200 million to about $2.3 billion. 

Do you think it is necessary to just have an open-ended ‘‘such 

sums as necessary’’ considering the current financial situation we 

find ourselves in in this country? 

Ms. WAKEFIELD. HHS does support the inclusion of the wording 

‘‘such sums as necessary’’ for subsequent fiscal years for each part 

of the act. So, yes, we do support such sums. 

Mr. WHITFIELD. So you do support it. 

I see my time has expired. 

Mr. PALLONE. Ms. Capps. 

Mrs. CAPPS. Thank you very much, Dr. Wakefield. I have a couple of questions for you during my time. 

One is to share with you my concern to learn that the Centers 

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I mean, there are all kinds of new phenomena arising within this 

area of HIV/AIDS: chronic length of living with the disease and a 

whole new raft of issues that need to be addressed. I am sure you 

are considering this something that needs to be dealt with as well. 

Do you have any ideas or plans in place to address the needs of 

women and children and families in light of the growing numbers 

of HIV-positive women of child-bearing age? Perhaps you can discuss, if you will, how part D of the legislation will help to ensure 

that their needs are met. 

Ms. WAKEFIELD. Well, you are right, part D is the part of the 

Ryan White program that is probably most targeted toward exactly 

the population of which you are concerned. It, of course, allocates 

funds through private and public organizations, community-based 

organizations, States and universities, and it can provide outpatient or ambulatory care directly to or through contracts that are 

awarded. It is really designed to serve women, infants, children living with HIV/AIDS support and provide support services to those 

individuals. That is really its key target population. 

We also have resources that are available through part F, the 

SPNS program it is referred to shorthand, that can be allocated to 

direct research and other activities to particular target populations. 

So that is another vehicle that I think it is safe to say could be 

added. 

Beyond that, parts A, parts B, and C also provide care to the 

population that you have just expressed concern about. But, as you 

indicated, part D is really targeted to mention women, infants, children, and young adults. 

Mrs. CAPPS. Thank you. And part of our goal, then, in our communities especially, is to identify and encourage people to get tested so that they can understand that they are and that they get into 

some of these programs and be able to deal with it early on. 

To that topic, I am concerned. You heard in several opening 

statements about the impact of several of our State budgets on the 

ability to care for HIV and AIDS patients. I have heard just horrendous stories in my district in California about matters of life 

and death, really, if our State budget is going to cut so drastically 

the services upon which people depend for their care. They are 

going to have to choose between their medicine and their food. 

I mean, I am sure it is not just confined to my district. I can see 

people in your audience nodding, and I know this is a story across 

the country now. 

How can we respond, how can HRSA respond to work with some 

of our States where this is such a huge challenge right now? 

Ms. WAKEFIELD. Well, you are right, we have been hearing from 

a number of States about the challenges that they are facing locally. And certainly California is one of those States that we are 

trying to monitor and work with as closely as possible. 

On the front end, the administration, of course, strongly supports 

continuation of this program, first and foremost, to provide vital 

funding to States and cities to provide services to people living with 

HIV/AIDS. 

In part, perhaps, to address your question, it might be useful for 

you to know, too, that the President’s fiscal year 2010 budget request provides and asks for an increase of about $53.9 million over 


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the fiscal year 2009 omnibus level. That funding would continue to 

support over 2,300 providers that would help half a million individuals living with HIV/AIDS obtain access to life-sustaining care and 

services. So, in fact, there is an additional request—a request for 

additional funding, I should say, that should help to mitigate a bit 

of those concerns. 

But bottom line, we are aware of that and working as closely as 

we can with jurisdictions and States that are feeling particular 

pressure to maintain their services to this very vulnerable population. 

Mrs. CAPPS. Well, you can be assured there are many Members 

of our Congress, including in this committee, who will seek to look 

for further funds if that is necessary as we see some of these State 

budgets unfold. I don’t think it has really hit yet as hard as we are 

going to see in the coming months, where we are really facing in 

our communities—it is not just this population, unfortunately, but 

this is one that has clearly made itself known to me. And I know 

my colleagues will share in wanting to help you if there is any 

emergency funding that can be made available. 

And surely the increase in the budget for next year is going to 

be something—it was intended, I am sure, to expand services, but 

at least it will provide that stopgap, hopefully, for some of the 

States where the bottom is falling out. 

And I appreciate your awareness of and concern for this situation. 

Ms. WAKEFIELD. Again, we are aware, we are concerned. And we 

have been trying to collect data, or information at least, anecdotally 

from our contacts in each of the States. So we have a little bit of 

a litmus test about how things are going at the State level. We will 

continue to try and do that and then share that information. 

Mrs. CAPPS. We will encourage them locally to reach out to you, 

let you know what the status is. 

Thank you. 

Thank you, Mr. Chairman. 

Mr. PALLONE. Thank you. 

Ranking Member Mr. Barton. 

Mr. BARTON. Thank you, Mr. Chairman. I don’t think I will take 

up my full 5 minutes. 

Dr. Wakefield, I am assuming that you are here as the official 

representative of the Obama administration. Is that correct? 

Ms. WAKEFIELD. I am here representing the administration and 

HHS. 

Mr. BARTON. OK, so you speak for them. 

Ms. WAKEFIELD. Are you inquiring, sir, about whether or not the 

testimony is—— 

Mr. BARTON. Well, I am just saying, if you give an answer and 

I like it, I can depend that that is the position of the Obama administration? 

Ms. WAKEFIELD. I am speaking as the HRSA Administrator. But 

the testimony that I have shared with you has been developed and 

reviewed with full collaboration. 

Mr. BARTON. Well, sometimes, in both administrations, Democrat 

and Republican, we have officials come and when we ask them if 


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they are on the record for the administration, they hem and haw 

and then say that it is their personal position. 

So I am not being devious. I am glad the chairman is holding the 

hearing, and I am glad you are here. But as the senior Republican, 

I want to ask some pretty straight questions, and if you give 

straight answers, I want to know that that is where the Obama position is. That is all. 

Ms. WAKEFIELD. And, if I might, I guess what I would add on 

the hemming and hawing part, what I would add is that it is of 

course a normal protocol in either administration for the administrations to release their official statement of administration policy 

at some point between committee hearings and markup and floor 

action. So that is the venue for that official administration position. 

Mr. BARTON. Well, I think we have spent a minute and a half 

of my time hemming and hawing already, so you are already at the 

top of the list in being able to do the Texas Two-Step. I am in awe 

of your ability to say nothing—— 

Ms. WAKEFIELD. I went at the school at the University of Texas 

at Austin. 

Mr. BARTON. I knew that. My wife did, too, so we are a mixed 

marriage. 

Anyway, let me ask the first question. This is an authorizing 

committee. We try to set the policy and set the provisions, and then 

we pass it over to the Appropriation Committee and they are supposed to implement by passing funding bills that do what we say. 

This draft, one of the problems that the Republicans have is that 

it uses the term ‘‘such sums,’’ and Mr. Whitfield has already discussed that. 

Does the Obama administration have a problem in working with 

the chairman and the ranking members on the Republican side before this bill is marked up to change that language from ‘‘such 

sums’’ to specific sums that everybody agrees are appropriate? 

And I don’t think we have a huge difference in funding priorities. 

At least if we do, I am not aware of it. 

Ms. WAKEFIELD. We don’t oppose ‘‘such sums,’’ but we would be 

happy to work with the committee going forward. 

Mr. BARTON. Well, we want—and, again, I think even my distinguished chairman, Mr. Waxman, and the subcommittee chairmen 

would agree that if we can agree on what that amount should be, 

it is better from our committee perspective to tell the appropriators 

where to spend the money. 

So you are willing to work with—— 

Ms. WAKEFIELD. We are willing to work with you, sir. 

Mr. BARTON. Not just with me, but also with Mr. Pallone and 

Mr. Waxman. 

You know, I might point out that if we had the vote right now, 

my side would win. We have five, and they have two. But they 

probably have seven out in the annex eating pizza, so they would 

probably bring them in. 

My second—again, Mr. Whitfield talked about this. The provision 

in the draft bill that grandfathers the transitional grant areas, 

first, we don’t have a problem with there being transitional grants, 

and we don’t have a problem that those be authorized an additional 

3 years. 


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Our problem is, if we are really trying to solve the problem of 

helping those families and individuals that have AIDS, that population does change over time and its location changes over time. We 

would like to have some ability to move the money where the people are that still need assistance as opposed to where they may 

have been in the past. 

So we are not opposing transitional grants. We are not really 

even totally opposing the grandfathering. But we would like to 

work again with Mr. Waxman and Mr. Pallone and others on the 

majority, with the Obama administration, to see if we couldn’t 

move some of those grants into areas where there is more need 

today. And that is, I think, what Mr. Whitfield was trying to get 

at. 

Do you have an opposition to at least discussing that issue? 

Ms. WAKEFIELD. I would say that we share and are concerned 

about ensuring that there is stability of infrastructure to meet the 

needs of individuals with HIV/AIDS. So that is our very first priority, to make sure that there isn’t disruption in availability of care 

to those populations. 

Mr. BARTON. I understand that. 

Well, Mr. Chairman, my time has expired. We fully—I want to 

really emphasize this. I was chairman when we passed the last reauthorization bill in 2006, and I was very proud that that was one 

of the things that we did during my chairmanship. I am very glad 

that you and Mr. Waxman are trying to do a reauthorization bill. 

The Republicans really want to work to make that happen. We feel 

it is important from a committee perspective and from a policy perspective that we continue to have this bill in law, not in some appropriation rider that is year-to-year. And we also agree that, as 

the need changes and the location changes, we need to update the 

bill, update the law. We hope that we can do that in a very timely 

fashion and move this bill on a bipartisan basis. 

And, with that, I would yield back, Mr. Chairman. 

Mr. PALLONE. Thank you, Mr. Barton. 

Mr. Sarbanes. 

Mr. SARBANES. Thank you, Mr. Chairman. 

I just had a couple questions. 

First off, can you just be a little more specific about what it 

means to ‘‘not yet be mature’’ in this transition from code-based reporting to name-based reporting? I mean, what does that actually 

reflect? 

Ms. WAKEFIELD. So, for example, some States have had statutes 

at the State level that, for different reasons, had to be addressed 

in order for them to be able to produce these data. So that is one 

potential problem that has affected some States. 

Every State has its own set of circumstances in terms of being 

able to collect that information and aggregate it and make it available. So the process is really varying on a State-by-State basis. 

Data are collected from different sources. And, as I mentioned, 

there isn’t any one uniform pattern that was established initially 

that they are all working from, in terms of reporting those data. 

There is just the challenge of getting all of the people that have 

HIV reported by name. And, as I said, States have in some cases 

better circumstances in collecting that information, in other cirVerDate Mar 15 2010 08:41 Aug 02, 2012 Jkt 074093 PO 00000 Frm 00048 Fmt 6633 Sfmt 6602 E:\HR\OC\A093.XXX A093

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cumstances not as much infrastructure initially to be able to collect 

that data. So it really has been a fair variation State by State. 

Mr. SARBANES. And typically the range in terms of making the 

transition on a time basis has been 2 or 3 years, is what it is taking people? Or—— 

Ms. WAKEFIELD. Probably a little bit longer than that, more like 

a 3- to 5-year period of time to make the transition. 

Mr. SARBANES. OK. OK. 

The other question I had is—I was looking at some of the statistics in terms of the Ryan White program: serving half a million 

people across the country, of which 33 percent are uninsured and 

56 percent are underinsured. 

And there has been some allusion, of course, as there would be, 

to the fact that we are wrestling here with a larger health insurance reform effort, where we would hope that we would get to a 

place where there is much broader coverage available to people and 

we don’t have the same numbers of either uninsured or underinsured people. 

But I also anticipate that we shouldn’t fall into the trap of thinking that because we will find ways of providing better coverage 

going forward for the whole population of the country, including 

those who live with HIV and AIDS, that somehow there will be 

some kind of one-for-one corollary in terms of reducing this support 

that exists through this program. 

So I wonder if you could speak to the fact, as I see it, that so 

much of what makes this successful is that it is approached from, 

sort of, the public health standpoint, with resources flowing to collaborative networks that exist in States and at the community 

level, and that that kind of infrastructure support needs to continue regardless of what the individual coverage status is that a 

particular person may have. 

So if you could just speak to that. 

Ms. WAKEFIELD. The Ryan White HIV/AIDS program does fill 

really significant gaps currently, and it provides critical capacity to 

reach underserved populations, the very people that you were just 

describing, percentages of uninsured and underinsured. And currently about 72 percent of the people who are served, for example, 

are below the poverty level. 

The administration believes that the Ryan White HIV/AIDS program will continue to play a vital role after health care reform is 

enacted, for example because of some of the services that are provided through it—services such as medical transportation, nutrition services, case management services—that are part of not the 

core services part of Ryan White but rather the support services, 

for which resources are currently allocated and used across the 

country, casting this, just as you indicated, as a broader public 

health, community approach to care. 

Mr. SARBANES. Thank you. I mean, I guess I am just trying to 

make the point that there is a—and it is really the case management side of things—dimension to what is offered through these resources that will continue to be absolutely critical even if an individual now has access to insurance coverage through more conventional means as a result of some of the reforms we have put in 

place. 


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If we don’t bring this other lens to the table and continue to sustain it, then many of the gains we are trying to make will be lost. 

So I appreciate your testimony on that and yield back my time. 

Mr. PALLONE. Thank you. 

Mr. Burgess. 

Mr. BURGESS. Thank you, Mr. Chairman. 

Dr. Wakefield, thank you for being here today. I am going to ask 

you a question that Chairman Pallone already asked you. And I am 

a little scared to do it because I didn’t understand the answer you 

gave him, and so I am hoping you will give us the translation. 

When you talked about the severity-of-need index, you gave a 

very complex answer. But can you tell us just what that means to 

our districts and our constituents, what that means to the folks 

back home? 

Ms. WAKEFIELD. Right now, the data associated with the severity-of-need index is on our Web site. So your folks back home could 

actually take a look at how the data are collected and what they 

are displaying. So that information is accessible that way. 

Our formal report to you, however, is still in process. And, as I 

mentioned, we hope to get that to you shortly. 

Mr. BURGESS. So what is the practical implication for the folks 

back home? They go to the Web site, they check out the data. Are 

there, in fact, additional funds that they could plus-up with now? 

Or is that awaiting your report back to us? 

Ms. WAKEFIELD. That is correct, waiting. There are not dollars 

associated with this at this point in time. 

Mr. BURGESS. OK. Thank you. That is helpful. 

You also talked a little bit about moving from a palliative care 

model to a chronic care model. Can you briefly just explain what 

that will look like? 

Ms. WAKEFIELD. Sure. The reference is really a bit more about 

where we have come from in terms of the treatment of HIV/AIDS, 

moving from a time when we didn’t have available the available 

drugs, pharmaceuticals to treat and extend the lives of individuals. 

So we are at a very different place currently in terms of treatment 

of care of patients than we were when this epidemic first began 

and as it developed. 

Mr. BURGESS. Correct. And is that likely to affect your funding 

model? Because clearly now the emphasis is much more on the lifeextending drugs and the disease management drugs that are available but also happen to be fairly expensive and come with some 

other costs of side effects and that sort of thing. 

Ms. WAKEFIELD. Yes, and so we have grantees that request funding to be able to deliver services using a chronic care model 

through case management and so on. 

Mr. BURGESS. Now, is that in widespread usage throughout all 

of the communities? 

Ms. WAKEFIELD. Yes, I mean, in terms of how grantees are working to deliver care to patients. Right now what we are seeing in 

terms of allocation of funding is more dollars available, for example, for drug therapy, pharmaceuticals, and less money having to 

be devoted, for example, to hospice care. So that would be an example of a change in—— 


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Mr. BURGESS. OK. And you did make the statement at one point 

that your first priority is the stability of infrastructure. And I just 

wanted to be clear. Really, our first priority is treating patients. 

And if treating patients is providing them with the therapeutic 

cocktails they need to extend their lives and minimize their symptoms, that should be our first priority. 

Ms. WAKEFIELD. Absolutely. 

Mr. BURGESS. Let me ask you a question. I actually may be very 

brief. I may submit this in writing. You just referenced the health 

care workforce, which is extremely important to me. But, as I recall 

from our previous work on reauthorization of Ryan White, the 

health care workforce is not really specifically addressed in the bill; 

that comes in other parts of what we are doing. Is that not correct? 

Ms. WAKEFIELD. Well, health care workforce is addressed a bit 

through part F, for example, through the education training centers that exist, and can provide at least short-term information to 

health care providers to help them deliver health care services. 

So we do have funding that goes to universities, for example, I 

believe about 11 of them, 11 education training centers, to help 

with at least short-term training of HIV/AIDS health care providers. That is what exists currently. 

Mr. BURGESS. OK. And, again, I may submit some additional 

questions about that in writing to you. 

Let me just briefly reference—Dr. Christensen referenced incarcerated populations. And we have a significant problem in our area 

back in Fort Worth with people who have spent time in prison, 

come back with a new diagnosis, and may bring that illness back 

with them to their homes when they are re-entered into society. 

Is there anything over the horizon that you are looking at in 

being able to capture these problems when the person is incarcerated and then an educational way to help mitigate that problem as 

they come back into the community? 

Ms. WAKEFIELD. We have some of our HIV/AIDS clinics that do 

pay special attention to the very population that you are describing 

right now. 

We also are looking at supporting models of care that target the 

population moving from incarceration back into community. And 

we have a particular initiative that focuses explicitly in that area 

that is ongoing now. I don’t have results I could report to you at 

this point, but it is ongoing. 

Mr. BURGESS. Again, we may submit something in writing to you 

on that. 

And then, just finally, who is the head of the Center for Medicare 

and Medicaid Services currently? 

Ms. WAKEFIELD. We have an acting head. 

Mr. BURGESS. Is that a problem? 

Ms. WAKEFIELD. I enjoy really very good relationships with my 

CMS colleagues. I haven’t had any difficulties in terms of my meeting my information needs. 

Mr. BURGESS. Well, when you visit back with the administration, 

we would benefit, I think, from having a full-time Administrator. 

It is, after all, the largest insurance company on the face of the 

earth, and they need a full-time CEO. 

I will yield back, Mr. Chairman. 


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Mr. PALLONE. Ms. Christensen. 

Mrs. CHRISTENSEN. Thank you, Mr. Chairman. 

Dr. Wakefield, we welcome your experience and your expertise 

that you are bringing to the office. 

As I said in my opening statement, many of us are concerned 

that the Minority AIDS Initiative was never really allowed to live 

up to its objective of creating the local infrastructure in minority 

communities. And Dr. Parham has been through this with us since 

its inception. And then changes were made that made it hard for 

these small organizations to compete for funding. They have been 

assessed on outcomes that were really not appropriate for what 

they were being asked to do. 

And given that the hardest-hit communities remain those of 

color—and I quoted 71 percent of new AIDS cases and 67 percent 

of people living with AIDS are people of color—what do you envision, what would you recommend, from the perspective of the 

HRSA Administrator, to ease the existing disparities, particularly 

among communities of color? 

And what do you envision as perhaps a larger role for the one 

and only National Minority AIDS Education and Training Center, 

which is doing great work but with a lot of limitations? 

Ms. WAKEFIELD. We are very supportive of our training centers, 

including the one that you reference. And we are also supportive 

in terms of preparing the next generation of health care providers, 

of additional resources going to those training centers, to provide 

for education and training over a longer period of time so that our 

next generation of health care providers can meet the needs of the 

population that is affected. 

And, as you indicated, we have a high proportion of minorities 

who are HIV/AIDS infected. So that is a concern for us. And we 

look to our training centers, as you indicated, to be supportive in 

terms of preparing health care providers to better meet those 

health care needs. 

We also, of course, have the Minority HIV/AIDS Initiative. And 

that is threaded through various parts of the Ryan White CARE 

Act and provides resources and services for the particular population for which you have expressed your personal concern. 

Mrs. CHRISTENSEN. Our intention originally was that the organizations within that community would be helped to develop the capacity, and that really didn’t happen. 

Are you in favor of building capacity from within the communities rather than bringing organizations from outside to work with 

the communities? Do you tend to the side of having the communities build that capacity themselves? Because I think that is 

where we have failed to, you know, really meet the goals. 

Ms. WAKEFIELD. Well, there are pieces, of course, of Ryan White 

that really allow for local community input about strategies that 

might be best aligned to meet the needs of the individuals in their 

communities. So, as the program is currently deployed, not everything, of course, is dictated from the Federal level, but rather we 

work with potential grantees when they submit, for example, proposals for supplemental funding, and they identify locally what 

their priority needs might be for the populations that they serve. 


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I think that it is very important, that we listen to local communities and that we are receptive to the strategies that they are recommending about how to best meet their communities’ needs. 

Mrs. CHRISTENSEN. Well, I am sure, you know, particularly the 

Congressional Black Caucus, which was instrumental in getting 

this started, would be interested in sitting down and discussing 

this with you further. 

On the hold-harmless proposal in the consensus document, I tend 

to agree with the minority position, which agrees that in 2010 it 

should be set at no less than 95 percent of funding for 2009, but 

disagrees on 2011 and 2012. This group would like to see the formula funding for parts A and B better match the number of HIV 

and AIDS cases in each jurisdiction rather than staying at the 100 

percent. 

And it just seems to me, and wouldn’t you agree, that following 

what the minority view has suggested—and these are places like 

the Southern AIDS Coalition that represents a part of the country 

which is becoming the epicenter of this disease—but wouldn’t you 

agree that their proposal would be a better way of ensuring that 

the funding follow the epidemic? 

Ms. WAKEFIELD. HRSA recommends that we continue hold-harmless provisions for part A and part B grantees. We will, of course, 

look and provide technical assistance as you make determinations 

about what more specific provisions you would be interested in pursuing as a committee. We will be happy to work with your committee staff—the program will be happy to work with your committee staff as you have different approaches to that, to hold harmless. But bottom line, we recommend continuing hold-harmless provisions for both A and B. 

Mrs. CHRISTENSEN. My time is up. Thank you. 

Mr. PALLONE. Thank you. 

Mr. Shimkus. 

Mr. SHIMKUS. Thank you, Mr. Chairman. 

The benefit of the hearing process that we are going through is 

it reminds us and get into more specifics than we generally would 

do. And that is why I like to attend them as much as I can, because 

I learn tons. So excuse me if I am asking some basic stuff. 

So I have in the Ryan White program—and my first time I was 

really lobbied on this was a young boy in rural southern Illinois 

who was a hemophiliac and had a blood transfusion. He and his 

mom came in and said, ‘‘This is an important program for us.’’ And 

so that is why I think there is a bipartisan support. 

So you have part A based upon HIV and AIDS cases. You have 

part B, which is a supplemental, based upon formulas of more crises in an area, is that correct? Or you want to impact more money 

sooner rather than later? 

Ms. WAKEFIELD. Part B for States and territories and emerging 

communities, so communities that might have a smaller number of 

cases but look like they might be increasing. 

Also, in addition to—I think you mentioned maybe some discretionary funding in part B, true, ‘‘supplemental funding,’’ that might 

have been the term. There also is base or formula funds associated 

with part B, as well. So it has a formula component; it also has 

a supplemental component. 


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Mr. SHIMKUS. And then part C goes to early intervention clinics? 

Ms. WAKEFIELD. Yes, that is correct. 

Mr. SHIMKUS. Have we been able to do—obviously, we all know 

that education is a key to helping address and solve and mitigate 

health care risk across the board, whether it is HIV/AIDS or 

whether it is H1N1 or whatever else. And that is really an important, critical aspect. 

Do we see in the early intervention clinics, does that have an 

educational component? Or is that like the first stop for someone 

who is—where they figure out they have something wrong and the 

clinic is their first stop? 

Ms. WAKEFIELD. For part C you are asking about? 

Mr. SHIMKUS. Right. 

Ms. WAKEFIELD. That is discretionary funding. And that provides 

core medical and support services to people who are living with 

HIV/AIDS now, and so to folks in the service areas for those community organizations. 

Mr. SHIMKUS. And D is the family component, which is women, 

infants, children, and students, another formula-based? 

Ms. WAKEFIELD. No, that one is discretionary. 

Mr. SHIMKUS. And it is based upon what? I mean, you all have 

the discretion, obviously, but what are some of the parameters that 

you use? 

Ms. WAKEFIELD. Sure. So individuals or organizations, I should 

say, apply for funding—— 

Mr. SHIMKUS. It is a granting process. 

Ms. WAKEFIELD. Exactly. Correct. Yes. 

Mr. SHIMKUS. And then the F—which it took me a while to figure 

out that this is all part of F—you have the dental, which I think 

is easy to understand, and the AETCs and the SPNS, and I found 

out where that was. They are the ‘‘special projects of national significance.’’ That is another grant program? 

Ms. WAKEFIELD. That is correct. 

Mr. SHIMKUS. And then the MAI is Minority AIDS Initiative, 

which I think Representative Christensen has just elaborated on 

the importance of that. Think we all fully understand those issues. 

From the minority’s side, again, I think we would really want to 

encourage—because these are specific programs which have specific 

authorizations, hopefully based upon cases and money spent and 

historical aspects. And we do know populations shift. This is going 

to be an issue of ‘‘follow the money,’’ if you haven’t figured that out 

now, because people are going to say, ‘‘OK, we have areas that 

have historically been high. We don’t want to disenfranchise that 

pool of money.’’ 

I am from Illinois. Chicago is a big area. They are always talking 

to me about, ‘‘Let’s don’t hurt Chicago.’’ But I am a rural representative. So what if there is a migration into rural areas and that population shift is significant enough to start having an impact? So, 

whether we like it or not, like my colleague Congresswoman Capps 

said, this is really going to be a ‘‘follow the money’’ issue. 

So the question is on—that is why the ‘‘such sums as may be desired’’ is problematic for us in a period of increasing deficits and 

the national debt threefold so far in just this year. It is hard for 

us to go back to the public and say, ‘‘Blank check. We don’t know.’’ 


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It would be much better if we did some analysis, saying, ‘‘Here is 

the population, here is the need, here is the amount we need.’’ 

And we have historically been able to come back for a supplemental request and added money if we guess wrong, and I mean 

terribly wrong. But I would respectfully suggest that we go back 

and work with the committee to hone down a number. In this environment that we are in today, ‘‘such sums as may be requested’’ 

I think is a tough one to overcome, because it will be attacked 

across the board. 

And with that, thank you, Mr. Chairman. 

Mr. PALLONE. The gentleman from Georgia, Mr. Gingrey. 

Dr. GINGREY. Mr. Chairman, thank you. 

And it is amazing how often this happens, that you sit here for 

an hour, hour and a half, waiting. You have this prize question you 

are itching to ask, and the guy or the gal just before you asks your 

question. And Mr. Shimkus just did that. But I think it is such a 

good point, that I want to ask the question again. 

And, Dr. Wakefield, first of all, let me just say thank you. I think 

your testimony has been very forthright and interesting and informative. 

But, yes, what Representative Shimkus said in regard to ‘‘such 

sums as may be necessary,’’ and Representative Whitfield brought 

it up earlier on this side in his line of questioning, and your response to that was kind of, ‘‘Well, the language is OK with me,’’ 

rather than what I guess he hoped. 

And what maybe Representative Shimkus and certainly myself 

would like to suggest is this makes it a very difficult vote for those 

of us on the Republican side and maybe for 52 of the majority party 

when we get to the floor because of the climate that we are in, the 

very difficult times, this estimation of $9 trillion worth of deficit 

over the next 10 years and $1.8 trillion in 2009. 

The American people that were so fired up and feisty and in our 

face at these town hall meetings, it wasn’t just about their concern 

about a government takeover of our health care system, although 

certainly many Medicare patients were there and concerned about 

cuts to Medicare. A lot of these people were outraged over the continuation from the Republican majority for 12 years and now the 

first 9 months of the Obama administration and the majority of the 

Democrats over the last 21⁄2 years, it is just more of the same and 

getting worse. 

So the point that has been made about that, I think it should be 

well-taken by you, and I hope it is, because if President Obama— 

and I truly believe he does want bipartisan support for many initiatives, and he will talk about that, I am sure, tonight. But if you 

are going to get that, don’t put language like that in a bill where 

our constituents go nuts over that. And so, you know, to specifically 

say to spend a certain amount, up to a certain amount, then the 

appropriators can go up to that amount if they need to. And, as 

John Shimkus said, we could always come back and add, if necessary. 

Now, let me—and I want you to respond. And, fortunately, I 

have a little extra time. The chairman has been generous because 

I didn’t make an opening statement. And I will give you sufficient 

time to respond. 


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I am also concerned about this issue of this ‘‘hold harmless’’ 

these jurisdictions. It would seem to me that if we have a certain 

amount of money to allocate for something of this importance, HIV/ 

AIDS and trying to eradicate this disease in our lifetime, I hope, 

and to make life more palatable and tolerable and possibly even 

help these patients, 500,000 or more, I think you mentioned, nationwide, to be productive citizens, God help them. And we need to 

help them, no question about it. 

But if you have areas where the caseload is going down and you 

have other areas where the caseload is going up, you made the 

statement, ‘‘Well, you know, we still have those infrastructure 

needs, and they don’t go away.’’ Well, I think they do go away, 

maybe not in straight-line proportionality. And, therefore, in the 

districts where you are seeing more patients, I would guess that 

the infrastructure need funding goes up, too, maybe, again, not in 

a straight line. 

So explain to me once again why you wouldn’t want to reallocate 

this money and do this hold-harmless deal instead, where you can 

only cut a maximum of 5 percent in year 1 and no cuts in year 2 

and year 3? I mean, money doesn’t grow on trees, and I am sure 

you would agree with that, Doctor. So, once again, if you don’t 

mind explaining to us why you would support something like that, 

that kind of language? 

Ms. WAKEFIELD. So, HRSA recommends continuing hold-harmless provisions for both parts A and B grantees. 

The hold-harmless provisions were included in the 2006 reauthorization to prevent, as you indicated, destabilization of the HIV 

care infrastructure and also from significant funding shifts due to 

funding formula distributions from year to year. We are sensitive 

to the impact of funding changes on systems of care, as I indicated. 

And for those reasons, as well as for administrative simplification 

reasons, that is our recommendation. 

With regard to your comment about the ‘‘such sums’’ language in 

the legislation, HRSA will of course implement the program exactly 

the way the Congress suggests, in terms of spending. We will expend those funds to support these very critical programs. 

The ‘‘such sums’’ language that is included in the bill is, as I 

mentioned, certainly acceptable to HRSA. And we look forward to 

working with you to ensure that the funding that is allocated to 

this program meets community needs and is judiciously spent. So 

those are also very important from our perspective, that the community need is met and that those resources are very judiciously 

spent. 

Dr. GINGREY. Dr. Wakefield, thank you. And I am glad you would 

be willing to work with us. Because, as I point out, this is a bill 

that I don’t think very many Members on either side of the aisle 

would want to be on record of voting against, but the ‘‘such sums 

as necessary’’ just makes it more difficult. 

And I think, as others have said before me, that this is certainly 

a time where we need to be, at the Federal level spending the taxpayers’ money, we need to be tightening our belt. I mean, you 

know, you look at things like a dual-engine program for the joint 

strike fighter, and I could go on and name many things, sacred 

cows that we just continue to pour money into. 


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And so, if we can tighten our belts on this and be wise about how 

we spend the money and get the money to where it is needed in 

regard to these HIV/AIDS patients, rather than just continuing to 

support an infrastructure somewhere that has fewer and fewer patients to deal with—people may be sitting around, kind of, 

twiddling their thumbs a little bit, Doctor. You know, you may 

want to refute me on that. But that is my concern; it is being fiscally responsible with the American taxpayers’ money. 

And, Mr. Chairman, I yield back. 

Mr. PALLONE. Thank you. 

The gentlewoman from Colorado, Ms. DeGette. 

Ms. DEGETTE. Thank you very much, Mr. Chairman. 

Dr. Wakefield, I just wanted to follow up. I wanted to talk to you 

a little bit about the policy here. And I wanted to follow up on 

something that Mr. Burgess brought up very briefly, and that is 

the need that you talk about in your testimony for the training of 

new HIV health care professionals. 

I am wondering if you can describe the projections of how many 

new HIV health professionals we need. 

Ms. WAKEFIELD. I don’t have numbers with me or an estimation 

with me. I would be happy to go back and then provide that information for you. 

Ms. DEGETTE. That would be very, very helpful for us, especially 

with respect to the concerns expressed on the other side of the aisle 

on budget and so on, because that may play into how much this 

is really going to cost. 

How much unique training do HIV health care professionals need 

to have? 

Ms. WAKEFIELD. First of all, because of the length of the epidemic, the individuals, the clinicians who were first educated and 

were taking care of this population are basically now, after 25 

years, some of them are now coming close to retirement. So that 

population of health care providers, some of them will extend obviously longer. 

But it is really about bringing in training for that next generation of providers moving forward. Some of the most significant 

challenges are about managing and helping to support patients, for 

example, that have comorbidities, multiple diseases at one time, so 

an individual with diabetes, for example, that is also diagnosed 

with AIDS, and providing care to those populations with those codiseases or comorbidities over time in a chronic care fashion. So 

that is a different set of challenges than we were dealing with at 

the beginning of this epidemic, requiring a different set of skills. 

Ms. DEGETTE. The other different set of challenges is the increased use and effectiveness of pharmaceuticals. 

Ms. WAKEFIELD. So you make a really good point because many 

of the pharmaceuticals, for example, are pretty significant. In 

terms of their complexity, you can have difficulties, again to your 

point, with drug interactions and toxicities. That is another set as 

well as still, frankly, some residual stigma associated with this disease. So that is another area that clinicians are helped by being 

trained—by having education about this particular disease that 

isn’t common to diabetes, congestive heart failure and other chronic 

illnesses. 


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Ms. DEGETTE. But are there changes that we need to make to 

the Ryan White program to accommodate this training that we are 

going to have to be providing to the next generation of providers? 

Ms. WAKEFIELD. So through the testimony that I provided earlier, and mentioning the increased funding amounts that we support for the educational training centers, is a strategy to ensure 

that providers have that necessary training. 

Ms. DEGETTE. So it is really more funding, not necessarily types 

of training. 

Ms. WAKEFIELD. But we also have resources that are made available through our SPNS, our projects of national significance, to 

look at new care models and new care models for a specific populations, the type that, for example, Congressman Burgess mentioned, that is people transitioning from incarceration back into 

community and what that takes to meet the health care needs of 

that special population. 

Ms. DEGETTE. OK. Just one last area I want to talk about—that 

is food and nutrition—because, as you know, those are critical components for the survival of people living with HIV and AIDS. We 

have a wonderful, wonderful program in Denver, Project Angel 

Heart, that focuses on nutrition for folks with HIV/AIDS. It can reduce the side effects of antiretroviral medications, make them easier to tolerate. And also a lot of these medications don’t work if you 

don’t take them with food. So I am wondering if you can discuss 

HRSA’s recent guidance on food and nutrition. And while you are 

looking for the guidance, I am wondering if you have recommendations for food and nutrition services under parts A and B of the 

Ryan White program. 

Ms. WAKEFIELD. So in terms of nutrition services, we have a definition of medical nutrition therapy and—medical nutrition therapy 

that is considered a core service. So we have core services and a 

category of services that fall under that definition or fall within 

that category. We also have a set of services that fall into a category referred to as support services. So I am talking about medical 

nutritional therapy inside the core nutritional. And that medical 

nutritional therapy in those circumstances provided by a licensed 

registered dietitian outside of a primary care visit, the provision of 

food, nutritional services, nutritional supplements may be provided 

pursuant to a physician’s recommendation and then with a nutritional plan developed by a licensed registered dietitian. Nutritional 

services that are not provided by a licensed registered dietitian are 

considered a support service. Food nutritional services and supplements that are not provided pursuant to a physician’s recommendation, again, linked to a nutritional plan developed by that 

dietitian are considered support services. So you can see where nutritional services track differently as a core medical service and 

what is required there versus nutritional services that track 

through the support services category. 

Ms. DEGETTE. Thank you. 

Thank you very much, Mr. Chairman. 

Mr. PALLONE. Thank you. And thank you for your testimony. We 

may have some additional questions that Members will send forth. 

I know Mr. Burgess mentioned in particular. But we will get those 

to you fairly quickly so you can respond. 


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Thank you very much. We appreciate it. 

Then I would ask the second panel to come forward. 

Thank you for being with us today. Let me introduce each of you 

on the second panel from my left to right. First is Marcia Crosse. 

Dr. Marcia Crosse is the Health Care Director for the U.S. Government Accountability Office. Second is Ms. Julie Scofield, who is Executive Director of the National Alliance of State and Territorial 

AIDS Directors. And third is Dr. Donna Elaine Sweet, who is a professor at the Department of Internal Medicine at the University of 

Kansas School of Medicine and Board Chair of the American Academy of HIV Medicine. 

We try to ask you to limit your remarks to 5 minutes. Of course, 

you can always submit your statement for the record, and after you 

are done, we will take some questions from the Members. 

I will start on my left with Dr. Crosse. 

STATEMENTS OF MARCIA CROSSE, PH.D., HEALTH CARE DIRECTOR, U.S. GOVERNMENT ACCOUNTABILITY OFFICE; 

JULIE M. SCOFIELD, EXECUTIVE DIRECTOR, NATIONAL ALLIANCE OF STATE AND TERRITORIAL AIDS DIRECTORS; AND 

DONNA ELAINE SWEET, M.D., MACP, AAHIVS, PROFESSOR, 

DEPARTMENT OF INTERNAL MEDICINE, UNIVERSITY OF 

KANSAS, SCHOOL OF MEDICINE, BOARD CHAIR, AMERICAN 

ACADEMY OF HIV MEDICINE 

STATEMENT OF MARCIA CROSSE 

Ms. CROSSE. Thank you, Mr. Chairman, members of the subcommittee. I am pleased to be here today to discuss the Ryan 

White program. As we have heard, this year about $2.2 billion was 

provided through the program to assist over 500,000 mostly low-income, underinsured or uninsured individuals living with HIV/ 

AIDS. The majority of this funding was distributed through part A 

grants to qualifying metropolitan areas and part B grants to 

States, the District of Columbia and territories. 

Most of this funding is distributed to grantees either as base or 

supplemental grants. Base grants are distributed by formula, and 

HRSA uses a grantee share of living HIV/AIDS cases to determine 

the amount of the grant. Supplemental grants are generally awarded through a competitive process based on the demonstration of severe need and other criteria. 

In addition, the Minority AIDS Initiative, or MAI, grants as we 

have heard, are separate supplemental grants intended to address 

disparities for minorities in access to treatment and health outcomes. 

Three other parts of the program provide lower levels of funding 

to public and private nonprofit organizations for specific purposes 

and include part D grants for family-centered comprehensive care 

to children, youth, women and their families. 

When the Ryan White CARE Act was last reauthorized in 2006, 

Congress made a number of changes in the structure and funding 

requirements of the program with the goals of better targeting 

funding to areas of need and increasing the proportion of funding 

going to direct service delivery. For example, Congress changed the 

process by which HRSA awards MAI grants under part A and part 


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B from a formula based solely on demographics to a competitive 

process to better target funding. The legislation also capped at 10 

percent the amount that part D grantees could spend on administrative expenses to increase the funding for services. Congress included mandates for GAO to study the changes to the MAI award 

process and the part D allowance for administrative expenses. 

My testimony today is based on our March 2009 report on the 

MAI provisions and our December 2008 report on the part D administrative expense cap. We found that the new competitive process for awarding MAI grants altered funding for part A and part 

B grantees from what they would have received under the old formula-based process. For example, in fiscal year 2007, Phoenix received about 40 percent less than it would have received under the 

old formula, while Houston received about 11 percent more. All 

part A grantees that applied for MAI funding received it, with 

grant amounts in fiscal year 2007 ranging from $50,000 to $9.3 

million. All part B grantees that applied for MAI funding also received it; however, half of the part B grantees decided that the new 

administrative requirements, including a separate application for 

MAI funds and increased reporting requirements, were not worth 

the amount of funds that they expected to receive, and therefore 

they chose not to apply. For the part B grantees that submitted applications, fiscal year 2007 MAI funding ranged from $2,500 to 

about $1.5 million. 

The change to a competitive MAI grant process did not appear 

to bring in new service providers or change the approach to reaching minority populations. Grantees told us that they generally 

funded the same service providers and initiatives to reduce minority health disparities as they had in prior years. 

With regard to the part D administrative expense gap, we found 

that grantees were in compliance with the gap, having charged 10 

percent or less of their grant award for administrative expenses, 

such as rent and utilities. However, about half of the grantees reported that not all of their part D administrative expenses were 

covered by the 10 percent allowance, and they were forced to use 

money from their organizations’ general operating budgets or other 

sources to cover their actual costs. 

In addition, grantees such as universities that had negotiated indirect cost rates with the Federal Government could spend more of 

their part D grants on such expenses because they could also 

charge for indirect costs. These grantees reported spending up to 

26 percent of their part D grants on indirect costs in addition to 

the 10 percent allowed under the cap. While the goal of the cap 

was to increase services, grantees reported that the cap had not altered either the amount or type of services they provide, and that 

the cap made it necessary for clinical staff to perform administrative tasks. 

In summary, our review of the first year’s implementation of 

these provisions did not demonstrate a major increase in services; 

however, it remains to be seen whether the move to a competitive 

MAI grant process or the part D administrative expense cap will 

meet the goals of better targeting funding to areas of need and increasing the proportion of funding going to direct services delivery 

moving forward. 


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Mr. Chairman, this completes my prepared remarks. I would be 

happy to respond to any questions you or other members of the 

subcommittee may have. 

Mr. PALLONE. Thank you. 

[The prepared statement of Ms. Crosse follows:] 


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Mr. PALLONE. Ms. Scofield. 

STATEMENT OF JULIE M. SCOFIELD 

Ms. SCOFIELD. Good afternoon, Mr. Chairman, members of the 

committee. I am Julie Scofield, Executive Director of the National 

Alliance of State and Territorial AIDS Directors, NASTAD. Thank 

you for inviting me to speak with you today about the urgent need 

to extend the Ryan White program, which sunsets on September 

30. 

NASTAD and the HIV/AIDS community appreciates the longstanding support of the Energy and Commerce Committee and the 

House of Representatives for the Ryan White program and the domestic HIV/AIDS prevention programs that are extremely important to Americans living and at risk for HIV/AIDS. State AIDS directors in all 50 States, the District of Columbia, Puerto Rico, the 

U.S. Virgin Islands and 6 U.S. territories represented by NASTAD 

administer over $1.2 billion in Ryan White part B base and AIDS 

drug assistance program funds each year to provide comprehensive 

care and treatment for individuals living in their jurisdictions. 

NASTAD, along with AIDS Action, cochairs the Ryan White 

Work Group, an affiliated work group of the Federal AIDS Policy 

Partnership. The Ryan White Work Group is a coalition of national, local and community-based service providers and HIV/AIDS 

organizations. The work group developed the Community Consensus document which currently has over 300 signatures from 47 

States, D.C. and Puerto Rico. 

There is an exceptional level of cohesiveness in the community 

around the path for extending the Ryan White program and a 

growing call for action by the September 30 deadline. I am submitting the Community Consensus document for the hearing record. 

The community is extremely pleased to see that the draft legislation closely follows the Community Consensus document, and even 

more pleased with the leadership being demonstrated by the committee to act quickly. 

NASTAD and the HIV/AIDS community support a 3-year extension of Ryan White that essentially restarts the clock and continues 

many important provisions for grantees. These include the continuation of protections and penalties for States with maturing namesbased HIV reporting systems, hold harmless protection, along with 

the extension of protection for transitional grant areas and their 

eligibility. In order to maintain health stability for persons living 

with HIV/AIDS, it is essential to secure an extension of the Ryan 

White program as soon as possible while the larger issues of health 

reform and the development of a national HIV/AIDS strategy are 

developed, implemented and assessed. We also welcome the administration’s proposal for a 4-year extension. 

NASTAD is extremely pleased to see that the discussion draft 

addresses an issue that has caused undue burden on State grantees. The current law contains a provision that penalizes part A and 

b grantees if they have more than 2 percent of their award unobligated at the end of a grant year by making them ineligible for the 

supplemental components of their awards and reducing their grant 

awards in subsequent years. This provision prevents administrative difficulties for grantees which must work with subgrantees; 


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deal with budget cuts, hiring freezes, spending caps; as well as 

manage a variety of funding sources with varying grant periods. 

The presence of unobligated funds does not signal a lack of need 

for these funds; instead, it often reflects the presence of factors that 

are extremely difficult to manage. NASTAD supports raising the 

unobligated threshold from 2 to 5 percent. By eliminating the penalty that decreases a State’s subsequent year’s award by the entire 

amount of their unobligated balance, States will be able to retain 

the funds necessary to provide services to their clients. NASTAD 

believes that the penalty which makes grantees ineligible for supplemental funding should also be eliminated in order to ensure 

that jurisdictions have all possible funding. 

Related to this issue is a provision governing the use of rebate 

dollars accrued through a mix of Federal and State ADAP funds. 

HRSA has instructed States that they must spend their rebate dollars before the Federal grant award. This policy created a problem, 

particularly when combined with the new stringent rules regarding 

unobligated balances. Regardless of how rebate income is classified, 

the Ryan White program requires rebates to be put back into the 

program. The discussion draft goes far in clarifying this technical 

issue. We ask that the language be further changed to allow States 

to spend rebate funds after program funds in all cases, not just if 

doing so would avoid triggering a penalty. ADAPs are administratively very complex programs, and States need the utmost flexibility to ensure that dollars stretch as far as possible, particularly 

in these fiscally challenging times. 

The National Alliance of State and Territorial AIDS Directors 

thanks the Chairman and the rest of the committee for their 

thoughtful consideration of NASTAD and the community’s recommendations for extending the Ryan White program. We ask that 

you continue to prioritize passage of this important legislation and 

appreciate your ongoing attention to the September 30 deadline. 

NASTAD and the Ryan White Work Group will continue to do all 

that we can to support you in these efforts. 

Mr. PALLONE. Thank you, Ms. Scofield. 

[The prepared statement of Ms. Scofield follows:] 


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Mr. PALLONE. Dr. Sweet. 

STATEMENT OF DONNA E. SWEET 

Dr. SWEET. Chairman Pallone and distinguished members of the 

committee, I am honored to be here today to discuss the reauthorization and extension of the Ryan White program, specifically part 

C. I will keep my comments brief. I have submitted a full testimony for the record, and my credentials are in there, but I am here 

today as medical director of a part C Ryan White clinic in Wichita, 

Kansas, the other KU, who also sees patients in outreach clinics in 

Garden City, Salina and Pittsburgh. I am also a credentialed specialist in HIV/AIDS and the current Board Chair of the American 

Academy of HIV Medicine, headquartered here in Washington, 

D.C. 

The mission of my part C program is to provide care and early 

intervention services to all HIV-positive individuals in the State of 

Kansas regardless of their ability to pay. Part C clinics provide 

care nationally to approximately 250,000 people living with HIV, as 

well as providing HIV-related counseling and testing. Many have 

mixed sources of funding, including some or all parts of the Ryan 

White program. 

Today I would like to take you inside a part C clinic to the front 

lines of medicine, fighting for the lives of people living with HIV. 

My part C clinic provides care and treatment to 1,246 patients. Of 

these, 40 percent would have no coverage at all if it were not for 

the Ryan White CARE Act. We provide ongoing, comprehensive 

care to an ever-increasing number of patients. 

My clinic has an average annual increase of over 100 new patients a year; however, we are still working off the same number 

of Ryan White dollars we received since 1999. As a result, in the 

last 10 years my clinic patient load has doubled, and yet my funding has remained the same. To supplement our insufficient Federal 

dollars, we often do things like annual bake sales, picnics, and 

other things that the community does in order to support the clinic 

and its patients. 

There has been some discussion over the recent years of the concept of the patient-centered medical home. That is what my Ryan 

White part C clinic is and has been since 1994. In my clinic, case 

management, psychological counseling, dental care, pharmacy management, adherence counseling and, when needed, palliative care 

are all brought together under one roof. This approach has been 

central to our ability to retain patients in long-term care. 

The real effect of the Ryan White program if it were allowed to 

lapse for even a short amount of time would be seen on the front 

lines of the disease in clinics like mine. For my clinic that would 

mean losing access to part C money that pays for care and treatment of over 40 percent of my patients, part B money that funds 

my case managers, and ADAP money that provides drugs for patients who cannot afford them, nearly 80 percent of the total. On 

June 1, I would no longer be able to pay my staff and they would 

have to be let go. I have not had any staff turnover in 5 years, and 

my people are well trained in caring for my HIV patients. They are 

well qualified and would no doubt have no trouble finding other 

employment; however, the loss to my clinic would be irreversible. 


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If the Ryan White program were to face a gap in service of even 

a few months, years of investment in staff and infrastructure 

would be lost. 

Without part C, my patients would have no other place to go for 

the lifesaving services and treatment that we can now offer. Without care, patients’ lives would be lost. Over the last 20 years, HIV 

has become a highly manageable disease with proper care and 

treatment. In the mid-1990s, mortality rates plummeted with the 

new medicines and treatments which allowed better ways of fighting the virus. Patients are living longer, which brings about a new 

set of medical challenges. Treating HIV is enormously complex, but 

it becomes even more so when you are faced now with the medical 

needs of elderly patients. 

Fortunately in my clinic, I now see only 15 to 20 AIDS deaths 

a year, but that number will increase dramatically if the population loses access to the care they need. The Ryan White program 

is invaluable to the patients and the providers that it funds, and 

Congress must not delay in reauthorizing it. Over the past year, 

numerous HIV and AIDS organizations have come together 

through the Federal AIDS Policy Partnership, or FAPP, to form a 

consensus on reauthorizing the program. I have participated in 

those discussions, and I urge the committee to consider the recommendations of the consensus document which you have received. 

Among those recommendations, however, I would like to highlight 

a few that are important to me and my clinic. 

The CARE Act needs to be reauthorized for at least 3 years, and 

I also like the administration’s 4. We need to have assurance of a 

stable and continuous funding stream in order to care for our patients in the best way possible. Authorization levels included in legislation that was under discussion this year was a 3.7 percent increase for the majority of the parts, significantly less than the annual increase for community health centers. As someone running 

a clinic that really has to do its own fundraising to keep its doors 

open, I would appreciate consideration of language authorizing 

such sums as necessary in the program because we have not been 

getting what is necessary. And thirdly, the provision of core medical services, the 75/25 rule needs to be protected. Additional recommendations are listed, and I will urge the committee to thoughtfully consider them. 

But in closing, I would like to leave the committee with a few 

thoughts. Without the Ryan White program, my clinic never would 

have been created. Without a timely reauthorization, it may cease 

to exist. And without the clinic my patients will not receive the 

care they need. And without that care, the disease they live with 

every day may unnecessarily and prematurely claim their lives. 

The Ryan White program works. It is critical to the care and 

treatment of those affected by this Nation’s largest epidemic, and 

I urge the committee to authorize the program with all due haste. 

Thank you for the opportunity to testify today about Ryan White 

part C. This concludes my testimony, but I would be more than 

happy to answer questions. 

[The prepared statement of Dr. Sweet follows:] 


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Mr. PALLONE. Thank you, Dr. Sweet. 

We will now take some questions from the Members. I am going 

to try to get in three questions here in my 5 minutes or so. So first 

I will start with Ms. Scofield. 

In fiscal 2009, 29 States and 3 territories were held harmless for 

base funding or ADAP funds or both, and hold harmless is specifically intending to make sure that States don’t face precipitous declines in funding that would destabilize systems and services. Can 

you tell us more about why the Community Consensus, including 

groups from States with both older and newer epidemics, supports 

the extensions of the hold harmless protections? 

Ms. SCOFIELD. Thank you. Well, I think all of us in the community understand that none of the components of Ryan White have 

received adequate funding in the last several years. Our estimates 

of need surpass what has been appropriated by about $500 million. 

So that is part of the issue at hand. 

In addition, however, when the last reauthorization occurred, 

there were changes in virtually every aspect of every formula of the 

program, and it has taken a long time for the dust to settle on the 

last reauthorization. Money did move around the country. So we 

are seeing how funds are being reallocated as a result of those formula changes. And in the first year after implementation of the 

last reauthorization, there were some significant increases to some 

jurisdictions. And so jurisdictions really were challenged to be able 

to obligate and use well all the funds that were provided. 

I think all of us recognize that in this current fiscal environment 

what is needed more than anything else is stability in funding. We 

estimate that State HIV/AIDS programs lost over $150 million in 

State resources in fiscal year 2009, and so really this is not the 

time for there to be anything but stability in their Federal allocations. 

Mr. PALLONE. Thank you. 

Dr. Sweet, you also talked about the lack of funding. I wanted 

to ask you about that. Part C provides grants directly to service 

providers to support outpatient HIV early intervention, and part C 

also funds planning grants and capacity development grants. This 

year part C was appropriated $201.9 million, which was only a 1.56 

percent increase over fiscal year 2008. Do you agree that this 1.56 

increase for 2008 is simply inadequate? And what has the impact 

of limited funding been on your clinic and other part C providers? 

Dr. SWEET. Well, thank you. It has certainly been inadequate. 

We have had level funding, which means rescissions each year over 

the last 10 years. We just went through an expansion grant process. The need is so tremendous, they had a lot of good grant applications, but were able to fund very, very few. Dr. Parham Hopson 

and Dr. Cheever, who were back here supporting Dr. Wakefield, I 

have known them for many years, and I know that they are also 

concerned about the fact that they have many, many people demonstrating need, like my clinics, but the money that was available 

for expansion grants was simply not enough to give almost anybody 

what they needed. 

So yes, we need more. And I think it is interesting that such 

sums as necessary wasn’t part of the last reauthorization. But as 

I have read the bills prior to that starting in 1990, there were 


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never any moneys put in as specified amounts. It always said ‘‘such 

sums’’ until this last time. So whatever has been in it is inadequate, and I think, as Julie said, what we need is across-the-board 

increased funding for all of our programs. 

What it has done for my clinic is simply made me truly—the 75/ 

25 doesn’t mean much to me because I spend 95 percent on medical 

care. Between the laboratory studies, the CD forecasts, the viral 

loads, the genotypes that I need to do to do quality medical care, 

I have simply had to cut out all of the other niceties other than 

case management. Transportation, food services, things like that I 

now do through individual fundraising, philanthropic things in the 

community because there is just not enough money in the grant to 

do the medical care. 

Mr. PALLONE. I appreciate that. Those are good examples. 

Going back to Ms. Scofield again about the TGAs. According to 

HRSA, there are six TGAs that are in danger of losing their status 

in fiscal year 2011, and the Community Consensus document recommends extending their status as TGAs for the next 3 years, basically the length of the extension that is in this draft. Can you 

elaborate on this recommendation? Why does the committee feel it 

is important to ensure this continued funding for these areas? 

Ms. SCOFIELD. Well, for one thing, TGA eligibility is based on reported AIDS cases, because we don’t have HIV and AIDS in all of 

the jurisdictions. So we know that many TGAs are serving clients 

with HIV well beyond the number of clients that they have with 

AIDS. So that is first and foremost. 

Secondly, I think that we all appreciate that as new jurisdictions 

may meet the case threshold, they may also become eligible to become TGAs. That just really has not happened. And if you really 

change and allow these TGAs to lose their funding, there is no 

guarantee that the States are going to be able to supplant that 

money. Given the State budget outlook at the moment, if TGAs lose 

those resources, the States simply are not going to be able to step 

in and replace those funds. And even though some of that TGA resource might flow into part B and be available, it would just go out 

through the regular formula. So again, there would be no guarantee that those TGAs would be left with any of the same resources to provide services. 

Mr. PALLONE. All right. Thank you very much. 

Dr. Burgess. 

Mr. BURGESS. Thank you, Mr. Chairman. 

Dr. Sweet, let me just be sure that I am understanding correctly. 

In the last reauthorization of the program, funding for part C was 

to increase by 3.7 percent per year, but the amount of funding that 

Mr. Pallone just described was a 1.7 percent increase. Was that a 

discrepancy between what we authorized and what the appropriators came up with? 

Dr. SWEET. I believe that is true. And there were also increased—in terms of an individual clinic like mine, the increase 

went into new clinics where there are places that have been talked 

about many times with new small groups of HIV-infected patients 

that certainly don’t meet TGA or EMA criteria, but where they desperately needed funding. So there have been new Ryan White seed 

clinics that have been funded through this time, and the new 


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money went to those. It did not go to increasing the base funds of 

those of us who have had clinics. 

Mr. BURGESS. In a perfect world, had that 3.7 percent increase 

been funded and made available to your clinic under the part C 

funds, would that have been a satisfactory amount for you to keep 

up with what you are doing? When you describe level funding, is 

that a consequence of inflation that is eating up the increases that 

are built into the authorization amounts? 

Dr. SWEET. I don’t think it would have been sufficient to do all 

of the things I would like to do for my patients, realizing, again, 

my base grant for part C in very specific terms right now is 

$80,000 less than it was 10 years ago because of level funding and 

rescissions. 

Mr. BURGESS. Is that in actual dollars or constant dollars? 

Dr. SWEET. Actual dollars. And it does not take into account the 

fact that there is a 2.5 to 3 percent increase in basic medical costs. 

My salaries have gone up in terms of the staff, the fringe benefits, 

the medical equipment and supplies that I buy. So truly, I have 

faced each year with increased patients, a declining amount of 

money per patient to be able to take care of them. It has made us 

very efficient, but we are at that point now where there is no more 

efficiency to be strung out on that string. So we are actually—our 

base fund is less than it was because of the 1 to 2 percent rescission that we pay back to the government on any grant. 

Mr. BURGESS. Explain to me about the rescission, because I am 

not quite sure I understand that. 

Dr. SWEET. Well, I am not too sure I understand it. We have 

GAO here, too. But it is the amount of money that is sort of taken 

back. Even though you are level funded, there is a little bit of it 

that stays with the Feds in order to administer the program at a 

Federal level. That is a clinically-oriented approach to a rescission. 

Mr. BURGESS. We will get to that in just a minute, but let me 

follow up on this. 

You have heard some discussion up here about, we need a number in there or such sums. I mean, here is our problem. We are an 

authorizing committee, and I always like to point out the first time 

I went out to visit the NIH, I really understood the difference between an authorizer and appropriator because there are no buildings named after authorizers. They are all named after appropriators. So herein is our problem. 

I mean, you heard Ranking Member Barton talk about this. We 

want your input on that number. I would like to see us put a number in there and then hold the appropriators’ feet to the fire on delivering of that number. We are not doing that well with having a 

number in there now, but how are we going to be able to even 

know that we are even close to the target if we don’t describe any 

sort—if we don’t give them any sort of target to meet? If they always underfund us by 50 percent, OK, we will increase it by 50 

percent. There is some logic to follow there. But if we just leave an 

open-ended discussion at the level of the appropriations, I don’t 

want to leave it up to them to make those decisions because we all 

know appropriators are very, very busy, important people. They 

have a lot of things to worry about, and the very tiny amounts of 


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money we are talking about in Ryan White may not even cross 

their radar screen. 

So help us. All I am saying is, help us with that. When Mr. Pallone writes the bill, I would like to see us put a number in there 

that is realistic. 

Dr. SWEET. Well, I can tell you, the coalition has thought a great 

deal about this, all of the 300-plus organizations that have been 

discussing this. And what we said for the 2010 coalition request for 

part C alone was an increase of $66.4 million over the $268.3 million that was otherwise requested. So we think at least $66 million 

more. 

I think the other way that one could get at that number, and I 

am sure that the HRSA people can help us, me and you, because 

we just went through this expansion grant cycle, and I know that 

they had a tremendous number of very good applications that they 

could not support, so finding out what those grants would have 

added up to would be another very ‘‘in real time’’ look at what community-based clinics like mine are facing and how desperate we are 

to get some increased base funding. 

Mr. BURGESS. I would just be careful, though, about do we want 

to create a wish list in what we would see in an ideal world, or 

what you need to run your clinic now, today, next year, the year 

following and the year following? We do have to be realistic in our 

assignment of that number. I think you have just described to me 

what would be a 30 or 40 percent increase. Did I do the math correctly on that? 

Dr. SWEET. Yes. I think it is 30 percent. 

What I would be happy with in my clinic is increased laboratory 

and dental and case management services. Those are things where 

I am really, really struggling. I have a chairman who believes in 

giving my time away. He says I can do that all I want, but when 

the lab bill comes, you, Dr. Burgess, know what a lab bill is like 

when you spend the money, and then you don’t have the money to 

pay it back. And as an example, Medicaid in my State, I pay $350 

for a genotype. If someone is failing therapy, their virus goes up, 

you need a genotype. That is state of the art. That genotype costs 

me $350 for my reference lab. Medicaid in my State pays $220. 

Mr. BURGESS. He is going to fix that in the health care bill. He 

told me because he loves us, he is going to fix that. 

Dr. SWEET. I have some fears about Medicaid covering this patient population because that would make it even harder. 

So laboratory services are one of the things that kill us in terms 

of outreach of our clinics and what we actually do because it takes 

us about $160 a quarter to do the basic laboratory management, 

and those costs go up all the time. So if you ask me, if I could get 

15 percent increase, I could probably right my clinic. Do I think I 

will get that? No. But I do think the ‘‘such sums’’ language is just 

all of our—the community’s attempt to get people to understand 

that we have been terribly underfunded for a long period of time. 

With that said, I can understand why you don’t want to give away 

the budget. 

Mr. BURGESS. Well, it is not even a question of that. There are 

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ficult to advocate for the Ryan White funds when there are other 

equally compelling cases to be made at the same time. 

Now, on the issue of laboratory funding and the genotype, because—is there a structural problem with the way we are assigning 

or we are allocating that expense? I mean, that seems like a fundamental problem within the Medicaid system, and I suspect it is not 

just for the Ryan White part C clinics that are being affected. I suspect that is something that occurs much more frequently, and that 

may be a structural defect that we should correct in whatever we 

decide to do here in the coming weeks with this bigger bill. So that 

insight is valuable as well. 

Dr. Crosse, I apologize. I ran out of time. I will submit a question 

in writing. I do want to get some additional information on the 

hold harmless issue. I am worried that we are not giving the 

money where it is actually needed and where patient care is actually required. But we will save that for the written response. 

Thank you, Mr. Chairman. 

Mr. PALLONE. Thank you. 

Dr. Christensen. 

Mrs. CHRISTENSEN. Thank you, Mr. Chairman. 

Dr. Crosse, I will begin with you. One of the findings that applies 

to most of the Minority AIDS Initiative’s part D grantees is that 

the 10 percent cap was difficult to live with, and in order not to 

sacrifice services, they really stretched everything else. Several 

have asked for indirect cost rates, and they reported spending 26 

percent of their part D above the 10 percent. Doesn’t that warrant 

some kind of a recommendation regarding the cap? And what 

would you recommend? 

Ms. CROSSE. Well, the problem that we saw with the part D 

grantees was mostly in small organizations. For the part D grantees that were part of university-based health care systems or other 

kind of larger provider structures, they had sufficient other kinds 

of general funding available to cover some of these things like—— 

Mrs. CHRISTENSEN. Can I just say that the Minority AIDS Initiative is really to try to get to those small organizations and build 

the capacity in those small organizations? 

Ms. CROSSE. The administrative expense cap was just for the 

part D grantees, and so that didn’t apply to the part A and part 

B grantees, which was really the focus of most of the work we did 

on Minority AIDS Initiatives. 

The Minority AIDS Initiative work that we did really focused on 

the grants flowing to the part A and part B grantees. There, one 

of the issues was that the—just the funding for the States was 

quite low. It was about $7 million in total that went out to the part 

B grantees. Then so when States were generally receiving something in the order of tens of thousands of dollars, that wasn’t 

enough for them to be able to establish new clinics, create new infrastructure to be able to move care more directly into the minority 

communities, as I know you have expressed as a goal of this program. 

The part A grantees generally were receiving several hundred 

thousand dollars. Again, when they had existing infrastructure 

that they wanted to continue to provide funds to, there wasn’t 

enough funding, there wasn’t enough increase in funding even with 


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the switch to a competitive process where new clinics could be established in minority neighborhoods to improve some of the problems about access, transportation difficulties, clinics focused particularly on minority populations that, you know, had been one of 

the concerns driving this program. 

And so what we found was that, yes, the dollars were going to 

provide services to minority patients, but it wasn’t creating new 

service providers. It wasn’t creating new streams of service or new 

kinds of structures to bring these services to the communities of 

color. 

Mrs. CHRISTENSEN. Thank you. 

Ms. Scofield, thank you for the answers that you have already 

given. They were very helpful. I am unclear on where NASTAD 

stands on the severity of need index. Does NASTAD believe that 

these should be components of the funding allocation process, perhaps not next year but at some point? 

Ms. SCOFIELD. We believe it absolutely is not ready for prime 

time. All of the indicators that have gone into it, we are pretty convinced that not all of them are able to be collected in a consistent 

manner across all jurisdictions. And frankly, we think it has a lot 

more work to be done before it would be ready to be used in any 

formula for the allocation of resources. 

Mrs. CHRISTENSEN. Do you think it should be a part of the process that we should work towards? 

Ms. SCOFIELD. You know, from my perspective, the best indication or the best thing to be using in a formula is disease burden 

as it relates to living HIV and AIDS cases. I think that actually 

is the best measure of making sure that the resources go where the 

epidemic actually is. 

Mrs. CHRISTENSEN. OK. Dr. Sweet, thank you also for your testimony. I think it was representative of many part C and other 

grantees under Ryan White across the country with the tough 

times making ends meet. So thank you for your commitment. 

Other than the money—and you may have mentioned this in response to Dr. Burgess, but my question was, other than money, are 

there changes in the bill that you would like to see that are not 

in our proposed legislation? And where do you stand on the medical 

and nutritional—the medical nutrition and medical transportation 

proposals? 

Dr. SWEET. Well, certainly I very much appreciate the bill draft 

that you wrote. I think it does reflect what the community is asking. These meetings and phone calls have been—I mean, when you 

put 300 voices on a phone call, it becomes difficult. And I think the 

fact that there has been a Community Consensus is something we 

should all be proud of because we have worked to make it a consensus. 

The last question is more difficult because that last question is 

all about the money. Certainly in the best of worlds, I would love 

to have more nutrition money, more transportation money. Those 

are the two things that my patients need that I would love to give 

more of. But when I have to—in this day and age, I can get someone to live 20, 30, 40 years if they get the right medicines, the right 

medical treatment and I do it right. So that medical care has to 

be preeminent in what I do. And consequently, the other support 


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services that I would like to do I have to short shrift in order to 

do the medical care. 

So that is all about the money. If I had enough money, then the 

75/25 wouldn’t be an issue. And I would love to be able to do go 

back to the days when I was able to offer nutritional supplementations and a lot more transportation than I can now. 

And back to the amount of money, I just thought, Dr. Burgess, 

I applied for a 20 percent increase with my expansion grant, and 

that would have made me much wholer and much more able to 

give more comprehensive services. So about 20 percent would be 

what my clinic needs, in answer to your question, over what I get 

now. 

Mrs. CHRISTENSEN. Thank you. 

Mr. PALLONE. Thank you. I thank all of you really. This was very 

helpful in terms of, you know, our moving forward with this bill. 

You know, Dr. Burgess and there may have been others mentioned 

that they will submit additional questions for the record. And we 

ask that Members submit those to the committee clerk within 10 

days or so, and you would be notified when those come through. 

But again, I want to thank you all. I know there weren’t a lot 

of Members here for the last panel, but the questions were good, 

and the answers were very helpful. So thank you. 

And without objection, this meeting of the subcommittee is adjourned. 

[Whereupon, at 1:54 p.m., the subcommittee was adjourned.] 

Æ 


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