S. Hrg. 109–846

ENSURING EARLY DIAGNOSIS AND ACCESS TO

TREATMENT FOR HIV/AIDS: CAN FEDERAL

RESOURCES BE MORE EFFECTIVELY TARGETED?

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UNITED STATES SENATE

ONE HUNDRED NINTH CONGRESS

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APRIL 26, 2006

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S. Hrg. 109–846

ENSURING EARLY DIAGNOSIS AND ACCESS TO

TREATMENT FOR HIV/AIDS: CAN FEDERAL

RESOURCES BE MORE EFFECTIVELY TARGETED?

HEARING

BEFORE THE

FEDERAL FINANCIAL MANAGEMENT, GOVERNMENT 

INFORMATION, AND INTERNATIONAL 

SECURITY SUBCOMMITTEE

OF THE

COMMITTEE ON 

HOMELAND SECURITY AND 

GOVERNMENTAL AFFAIRS 

UNITED STATES SENATE

ONE HUNDRED NINTH CONGRESS

SECOND SESSION

APRIL 26, 2006

Printed for the use of the Committee on Homeland Security 

and Governmental Affairs

(

(II)

COMMITTEE ON HOMELAND SECURITY AND GOVERNMENTAL AFFAIRS 

SUSAN M. COLLINS, Maine, Chairman 

TED STEVENS, Alaska 

GEORGE V. VOINOVICH, Ohio 

NORM COLEMAN, Minnesota 

TOM COBURN, Oklahoma 

LINCOLN D. CHAFEE, Rhode Island 

ROBERT F. BENNETT, Utah 

PETE V. DOMENICI, New Mexico 

JOHN W. WARNER, Virginia 

JOSEPH I. LIEBERMAN, Connecticut 

CARL LEVIN, Michigan 

DANIEL K. AKAKA, Hawaii 

THOMAS R. CARPER, Delaware 

MARK DAYTON, Minnesota 

FRANK LAUTENBERG, New Jersey 

MARK PRYOR, Arkansas

MICHAEL D. BOPP, Staff Director and Chief Counsel 

JOYCE A. RECHTSCHAFFEN, Minority Staff Director and Chief Counsel 

TRINA DRIESSNACK TYRER, Chief Clerk 

FEDERAL FINANCIAL MANAGEMENT, GOVERNMENT INFORMATION, AND 

INTERNATIONAL SECURITY SUBCOMMITTEE 

TOM COBURN, Oklahoma, Chairman 

TED STEVENS, Alaska 

GEORGE V. VOINOVICH, Ohio 

LINCOLN D. CHAFEE, Rhode Island 

ROBERT F. BENNETT, Utah 

PETE V. DOMENICI, New Mexico 

JOHN W. WARNER, Virginia 

THOMAS CARPER, Delaware 

CARL LEVIN, Michigan 

DANIEL K. AKAKA, Hawaii 

MARK DAYTON, Minnesota 

FRANK LAUTENBERG, New Jersey 

MARK PRYOR, Arkansas

KATY FRENCH, Staff Director 

SHEILA MURPHY, Minority Staff Director 

JOHN KILVINGTON, Minority Deputy Staff Director 

LIZ SCRANTON, Chief Clerk 

(III)

C O N T E N T S 

Opening statements: Page 

Senator Coburn ................................................................................................. 1

Senator Carper ................................................................................................. 4

WITNESSES 

WEDNESDAY, APRIL 26, 2006

Kevin Fenton, M.D., Director, National Center for HIV, STD, and TB Prevention, Centers for Disease Control and Prevention, U.S. Department of 

Health and Human Services ............................................................................... 6

Deborah Parham Hopson, Associate Administrator, HIV/AIDS Bureau, Health 

Resources and Services Administration, U.S. Department of Health and 

Human Services ................................................................................................... 8

Marcia Crosse, Director, Health Care, U.S. Government Accountability Office 9

M. Beth Scalco, Director, HIV/AIDS Program, Louisiana Office of Public 

Health, and Past Chair, National Alliance of State and Territorial AIDS 

Directors ................................................................................................................ 20

Michael Weinstein, President, AIDS Healthcare Foundation .............................. 23

ALPHABETICAL LIST OF WITNESSES

Crosse, Marcia: 

Testimony .......................................................................................................... 9

Prepared statement .......................................................................................... 55

Fenton, Kevin, M.D.: 

Testimony .......................................................................................................... 6

Prepared statement .......................................................................................... 31

Hopson, Deborah Parham: 

Testimony .......................................................................................................... 8

Prepared statement .......................................................................................... 46

Scalco, M. Beth: 

Testimony .......................................................................................................... 20

Prepared statement .......................................................................................... 64

Weinstein, Michael: 

Testimony .......................................................................................................... 23

Prepared statement .......................................................................................... 76

APPENDIX 

Questions and responses for the Record from: 

Dr. Fenton ......................................................................................................... 80

Ms. Hopson ........................................................................................................ 94

Ms. Crosse ......................................................................................................... 100

Ms. Scalco .......................................................................................................... 105

Mr. Weinstein with an attachment ................................................................. 108

Charts submitted by Senator Coburn for the Record ........................................... 129

Additional copy submitted by Senator Coburn for the Record ............................ 134

(1)

ENSURING EARLY DIAGNOSIS AND ACCESS 

TO TREATMENT FOR HIV/AIDS: 

CAN FEDERAL RESOURCES BE MORE 

EFFECTIVELY TARGETED? 

WEDNESDAY, APRIL 26, 2006

U.S. SENATE,

FEDERAL FINANCIAL MANAGEMENT, GOVERNMENT

INFORMATION, AND INTERNATIONAL SECURITY SUBCOMMITTEE,

OF THE COMMITTEE ON HOMELAND SECURITY

AND GOVERNMENTAL AFFAIRS, 

Washington, DC. 

The Subcommittee met, pursuant to notice, at 2:27 p.m., in room 

SD–342, Dirksen Senate Office Building, Hon. Tom Coburn, Chairman of the Subcommittee, presiding. 

Present: Senators Coburn and Carper. 

OPENING STATEMENT OF SENATOR COBURN 

Senator COBURN. Thank you. We are going to start early. We are 

going to have a vote here in a few minutes which will mean we will 

have to interrupt the hearing, so I am going to go on and start, if 

I may. 

I want to welcome all of our witnesses today. I want to thank you 

for the timeliness of your testimony and thank you for taking the 

time to be here. 

Today’s hearing examines domestic efforts to promote early diagnosis of HIV infection and ensure access to AIDS treatment. 

It has been nearly 25 years since the first cases of what would 

become known as AIDS were recognized. As a physician during 

much of this time period, I experienced the heartbreak of watching 

some of my patients, including mothers and children, succumb to 

this mysterious and incurable illness in the early days of the epidemic when effective treatments had not yet been developed. 

Even today, with the availability of revolutionary anti-retroviral 

treatments that have transformed a disease that was a death sentence into a manageable disease for many, it is still heartbreaking 

to deliver an HIV diagnosis to a patient and agonize with each one 

to determine how they can afford these life saving, yet extremely 

expensive, medications. 

As a physician, I believe it is essential that if we are to end this 

epidemic, we must make every effort to promote early diagnosis 

and ensure access to treatment for all those who are infected. We 

must also empower those who are infected and those who are not 

infected to prevent HIV from taking another life. This may require 

2

1The chart referred to appears in the Appendix on page 132. 

rethinking and reevaluating past and present policies and reconsidering ideas that have long ago been abandoned or even demonized. 

It is no secret that I have had many differences with some within 

the AIDS community, Federal health agencies, and even with the 

drug companies that produce the miraculous AIDS drugs that now 

many take for granted regarding how we could best address this 

disease. But we must not let our differences of opinions allow us 

to make enemies of those with different viewpoints, for we all hold 

the same common goal: Ending AIDS and the same common 

enemy, HIV. 

So many of the medical advances that my patients and those affected by HIV around the world benefit from today are the result 

of activists who forced the government to act on this epidemic 

when so many preferred to look away because they disapproved of 

the behaviors that were associated with this disease. 

Unfortunately, so much of how we have all reacted to the AIDS 

epidemic has been based on fear. Lack of knowledge led to fear. 

Fear led to discrimination and stigma. Discrimination and stigma 

led to fear. And fears became the basis of our response to HIV/

AIDS. The results have been tragic. Consider that the U.S. Government spends more than $20 billion 

a year on HIV/AIDS prevention, care, and research annually, yet 

more than one million Americans are now living with HIV/AIDS. 

Up to 59 percent of those Americans are not in regular care. More 

than 40,000 Americans become newly infected with HIV every 

year. It has not changed over the last 6 to 7 years, and this number 

has actually been unchanging for over a decade, as that chart will 

show.1 There are some estimates that it is as high as 60,000 new 

cases a year. The fact that we don’t know for sure tells us we have 

a problem. 

More than a quarter of those who are infected do not know they 

are infected. Hundreds of patients are on waiting lists for AIDS 

drugs, and more than half a million Americans have already died 

from this disease. As many as 45 percent of persons testing positive 

for HIV received their first positive test result less than a year before the AIDS was diagnosed. With an average of 10 years between 

HIV infection and an AIDS diagnosis, this suggests that people are 

living with HIV for many years before they are aware of their infection and may be unknowingly spreading the virus to others. 

To address these shortcomings, fear must be replaced with hope. 

We have the knowledge, the resources, and the commitment to provide hope to every American who is living with HIV/AIDS. But to 

do so, we must update our policies to ensure that all of those living 

with HIV have access to the hope that treatment can provide. 

This means we must also remove the barriers to testing. Fearbased policies continue to serve as deterrents to testing and diagnosis and deny the benefits of those miraculous AIDS drugs that 

the early activists fought so hard to make available to thousands 

of Americans today, often until it is far too late to prevent the inevitable. 

One example of the hope that can result from eliminating barriers to testing is the great success that has resulted from the baby 

3

1The chart referred to appears in the Appendix on page 131. 

2The charts referred to appear in the Appendix on pages 129–130. 

AIDS laws in New York and Connecticut that require every newborn to be tested for HIV antibodies and treatment provided to affected mothers and infants. 

New York passed a law requiring HIV testing of all newborns in 

1996. According to data we received just this week, the results of 

this law have been dramatic.1 The proportion of all pregnant 

women being aware of their HIV status at delivery has increased 

from 64 percent in 1997 to 95 percent in 2004. The number of HIVinfected infants in New York dropped from more than 500 a year 

to 8 in 2003. Furthermore, mothers and impacted infants are receiving care. 

Connecticut passed a similar law in 1999 requiring that 

newborns be tested for HIV antibodies if their mother’s HIV status 

was unknown. Prior to the law, only 28 percent of pregnant women 

were documented as being tested for HIV.2 Prenatal testing rates 

for other diseases were over 90 percent, which demonstrates how 

the unusual counseling regulations for HIV testing discouraged 

testing. After the law was enacted, this number of pregnant women 

being tested for HIV jumped to 90 percent. In the year that the law 

passed, 70 HIV-exposed newborns were born with five infants infected with the virus. Since that time, over 300 HIV-exposed infants have been born with only five infants becoming infected. The 

last baby infected with HIV to be recorded in the State was in 

2001, meaning Connecticut’s laws essentially eliminated baby 

AIDS. 

The success of these laws are rare victories in our battles against 

HIV and AIDS. 

The Government Accountability Office (GAO) today releases its 

second report this year that examines some of the issues involved 

in providing access to treatment and early intervention. The report 

reminds us of facts that we already know, such as most new HIV 

infections originate from HIV-infected persons not yet aware of 

their status. This emphasizes the need to identify HIV-infected persons and link them with appropriate services as soon as possible. 

It raises other issues of concern, such as ADAPs with waiting 

lists may not represent all eligible individuals who are not being 

served. And it points to opportunities where policy makers can do 

a better job to maximize the impact of the tens of billions of dollars 

that we are directing every year towards our HIV/AIDS efforts. 

Coincidentally, GAO’s reports come at a time when Congress is 

faced with reauthorization of the Ryan White CARE Act, which is 

the largest HIV/AIDS-specific Federal care program. While the program’s authorization expired 6 months ago, efforts are currently 

being made to renew the program, and I know of at least one bill 

that has been introduced in both the House of Representatives and 

the Senate that would do so taking account of many of GAO’s findings as well as the issues I have outlined and others that we will 

explore today. 

I look forward to hearing from our witnesses today, who include 

Dr. Marcia Crosse, Director of Government Accountability Office’s 

Public Health and Military Health Care Issues; Dr. Deborah 

4

Hopson, Associate Administrator of the Health Resources and Services Administration, HIV/AIDS Bureau; Dr. Kevin Fenton, Director 

of the National Center for HIV, STD, and TB Prevention at the 

Centers for Disease Control and Prevention; Ms. Beth Scalco, Director, HIV/AIDS Program, Louisiana Office of Public Health; and 

Michael Weinstein, President of the AIDS Healthcare Foundation, 

the Nation’s largest provider of HIV/AIDS medical care. 

Prior to you coming in, Senator Carper, I announced that we 

were going to have a vote. I will go vote if you will do youre opening statement. I will be right back and we will try to keep things 

going. 

Senator CARPER. OK, sounds good. 

OPENING STATEMENT OF SENATOR CARPER 

Senator CARPER [presiding]. Thanks, Mr. Chairman, and before 

you leave, let me just say that the Chairman of the Subcommittee 

has been very involved in these issues for some time and is one of 

the co-authors of the last reauthorization. I know he has been very 

much involved in our efforts to reauthorize the Ryan White CARE 

Act this time, as well. 

Thank you for joining us. We look forward to your testimony and 

to the opportunity to ask some questions of you, and our second 

panel, as well. 

The Ryan White CARE Act was first enacted, I believe in 1990. 

I was still in the House of Representatives at the time. Since then, 

we have made great progress, both in combatting the stigma that 

was once associated with the disease, but I think also in combatting the disease itself. We still have a long ways to go, but the 

CARE Act has been, I think, one of the chief Federal programs, at 

least, in the fight against HIV and AIDS. 

I think we can all agree that our goal in examining the Ryan 

White Act today is to ensure that Americans living with HIV/AIDS 

can get needed care and needed services. The Ryan White program 

is working to do that, at least that is what I am told, for over 

500,000 people each year. The program provides not only vital prescription drugs, but also needed support services to help patients 

stay on those drugs and adhere to complex drug regimens. 

In my State of Delaware, we have done, we think, a good job of 

providing needed health services to those with HIV and AIDS. We 

can always do better. Everything we do, we can do better, and that 

includes here. But we have made quality health care a priority and 

are fortunate to be able to offer what we think is a generous Medicaid program, a very generous AIDS drug assistance program, and 

high-quality Ryan White services. 

The witnesses that are here today before us, this panel and our 

next panel, will discuss a number of issues, largely focusing on the 

AIDS drug assistance program, on prevention and testing efforts, 

and on notification efforts. However, they will also be addressing 

a number of issues pertaining to the Ryan White authorization as 

a whole. At least, that is what I am told. 

I understand that the Senate HELP Committee and the House 

Energy and Commerce Committee are working together in a bipartisan way to come to agreement on the Ryan White ReauthorizaVerDate 0ct 09 2002 10:15 Mar 30, 2007 Jkt 028242 PO 00000 Frm 00010 Fmt 6633 Sfmt 6633 C:\DOCS\28242.TXT SAFFAIRS PsN: PAT
5

tion Act, and I hear they are making significant progress and I 

hope that the authorization can be completed this year. 

As we consider reauthorization of this program, I think it is important that we keep in mind that the program, on the whole, is 

working. We have lengthened the time from HIV infection to the 

onset of AIDS, which is a good thing. People with HIV and AIDS 

are living longer and living healthier. That is obviously a good 

thing. Of course, we can, as I said earlier, do more to strengthen 

the program, and we now face new challenges as the face of the 

disease itself evolves. I think, for the most part, we have done a 

good job, a commendable job. 

One of the goals of reauthorization should be to ensure that we 

can get the most out of our Federal investment in this program. We 

should ensure that the distribution of funding to States and cities 

under the CARE Act both supports the existing treatment infrastructure that we have built up over the last several years and also 

ensures that we address discrepancies in funding where they are 

present. We should ensure that the Ryan White dollars are spent 

in a smart way and that they are spent as a payer of last resort. 

We should also ensure that any unused funds are reinvested in the 

program in some way. 

I hope that the issues that are brought up before us today can 

inform the upcoming debate on reauthorization. Ryan White has always been seen as a bipartisan issue and I am hopeful that this 

year, the Congress will continue that tradition and that we can 

work together with the House to produce a bipartisan reauthorization package to send to the President for his signature. 

I think with that having been said, I am going to recess the Congress, go and vote myself, and I suspect that the Chairman will be 

back very shortly and begin your testimony. So I would just ask 

that we stand in recess for a few moments until the return of the 

Chairman and I will see you all then. Thank you. 

[Recess.] 

Senator COBURN [presiding]. Let me introduce, if I may, our first 

panel. I would ask our panel members to limit their testimony to 

5 minutes. We have read your testimony. Then we will have questions afterward. 

Dr. Kevin Fenton is Director of the National Center for HIV, 

STD, and TB Prevention, Centers for Disease Control and Prevention. He joined CDC in January 2005 as Chief of the National 

Syphilis Elimination Effort, leading a revitalization of this program 

to end the sustained transmission of syphilis in the United States. 

Prior to his work at CDC, Dr. Fenton was the Director of the HIV 

and Sexually Transmitted Infections Department of the United 

Kingdom’s Health Promotion Agency. 

Dr. Deborah Parham Hopson is the Associate Administrator for 

HIV/AIDS in the U.S. Department of Health and Human Services’ 

Health Resources and Services Administration. Dr. Hopson was appointed Associate Administrator for HIV/AIDS at HRSA on July 

29, 2002. As Associate Administrator for the AIDS Bureau, Dr. 

Hopson is responsible for directing the Ryan White Comprehensive 

AIDS Resources Emergency Care Act Program, which provides 

medical care, treatment, referrals, and social services to people living with and affected by HIV/AIDS throughout the United States. 

6

1The prepared statement of Dr. Fenton appears in the Appendix on page 31. 

She administers a budget of $2.02 billion that funds services for 

some 530,000 individuals each year. 

Dr. Marcia Crosse is Director for the Health Care Group at the 

Government Accountability Office. She has been responsible for 

overseeing multiple projects in the areas of biomedical research, 

bioterrorism, disease surveillance, HIV/AIDS, medical product safety, organ transplantation, and pharmaceutical regulation. She has 

been employed at GAO since 1985. 

I want to thank each of you again for being here, and I want to 

express publicly how much I depend on GAO, what a great functioning component of the U.S. Government they are, and how valuable they are to us as Members of Congress in being able to do our 

work. 

Dr. Fenton, I will recognize you first and then we will go to Dr. 

Hopson and then to Dr. Crosse. Welcome. 

TESTIMONY OF KEVIN FENTON, M.D.,1 DIRECTOR, NATIONAL 

CENTER FOR HIV, STD, AND TB PREVENTION, CENTERS FOR 

DISEASE CONTROL AND PREVENTION, U.S. DEPARTMENT OF 

HEALTH AND HUMAN SERVICES 

Dr. FENTON. Good afternoon. Thank you. Good afternoon, Mr. 

Chairman. My name is Kevin Fenton and I am the Director of the 

National Center for HIV, STD, and TB Prevention at the Centers 

for Disease Control and Prevention. Thank you for the opportunity 

to discuss CDC’s progress in reducing barriers to HIV testing and 

improving opportunities for early diagnosis and linkage to care. 

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

United States. Although the struggle to prevent new infections is 

not over, we have made substantial progress and achieved major 

successes. For instance, the dramatic decrease in mother-to-child or 

perinatal HIV transmission is one of the great success stories of 

HIV prevention. We have also seen declines in the number of HIV 

and AIDS cases attributed to injecting drug use. 

Despite such major successes, HIV infection and AIDS remain a 

leading cause of illness and death in the United States. The numbers are sobering. CDC estimates that currently, 1 to 1.2 million 

people in the United States are infected with HIV, and of these, 

roughly a quarter are undiagnosed and at high risk of transmitting 

HIV. This undiagnosed group is of great concern to us because they 

are not able to take advantage of medical treatment and because 

we believe that transmission by people who are unaware that they 

are HIV positive account for more than half of new HIV infections 

every year. 

Currently, CDC has a number of efforts underway to encourage 

early diagnosis of HIV infection. In 2003, CDC launched the Advancing HIV Prevention Initiative, or AHP, which reinforces CDC’s 

evidence-based approach that routine HIV testing implemented in 

a variety of settings will reduce barriers to HIV testing, improve 

opportunities for early diagnosis and linkage to prevention and 

care, and help reduce the number of new infections. 

CDC also encourages its funded partners to take HIV testing out 

into the community by using rapid tests in non-traditional settings 

7

and in health care settings that provide episodic care. In addition, 

CDC is currently updating guidelines for testing in health care settings, making HIV testing more routine. 

Finally, the President’s 2007 budget contains an increase in 

funding aimed at increasing the number of people who know their 

HIV serostatus through promoting rapid testing in areas of high 

HIV incidence. 

I would like to highlight one AHP demonstration project that we 

are particularly encouraged about. This project used social network 

strategies to reach persons at high risk of HIV infection in communities of color and demonstrated the feasibility of using these social 

networks to encourage HIV counseling, testing, and referral services. This strategy has proved to be very successful in reaching persons with undiagnosed HIV infection. 

In addition to reducing barriers to HIV testing and increasing 

the opportunity for early diagnosis, CDC is proposing to revise our 

guidelines for HIV testing of adults, adolescents, and pregnant 

women in health care settings. The revised guidelines will focus on 

increasing routine HIV screening of patients in health care settings, fostering the earlier detection of HIV infection, identifying 

and counseling persons with unrecognized HIV infection, and linking them to clinical and preventive services and further reducing 

perinatal transmission of HIV in the United States. 

Detecting HIV infection earlier through HIV screening has been 

shown to be cost effective, even in settings of low prevalence. The 

new guidelines will recommend routine or opt-out HIV screening in 

health care settings and are intended for providers in all health 

care settings. The guidelines do not modify existing guidelines for 

HIV counseling, testing, and referral for high-risk persons who 

seek HIV testing in non-clinical settings. 

As you know, to further support the goal of diagnosing HIV infections earlier and increasing access to care, the President’s 2007 

budget includes an increase of $93 million for CDC HIV prevention 

programs. Three major testing components are included: Testing in 

health care and non-clinical settings, in jails, and with injecting 

drug users. CDC will work collaboratively with other HHS agencies 

in these efforts. We anticipate testing more than three million persons and identifying over 46,000 infections. 

In closing, over the past 25 years, our Nation has made progress 

in preventing morbidity and mortality related to HIV. CDC remains committed to helping people live longer, healthier lives by 

preventing new HIV infections and protecting the health of those 

already infected. 

Thank you again for this opportunity and I look forward to answering any questions. 

Senator COBURN. Thank you, Dr. Fenton. Dr. Hopson. 

8

1The prepared statement of Ms. Hopson appears in the Appendix on page 46. 

TESTIMONY OF DEBORAH PARHAM HOPSON,1 ASSOCIATE ADMINISTRATOR, HIV/AIDS BUREAU, HEALTH RESOURCES AND 

SERVICES ADMINISTRATION, U.S. DEPARTMENT OF HEALTH 

AND HUMAN SERVICES 

Ms. HOPSON. Mr. Chairman, thank you for the opportunity to 

meet with you today on behalf of the Health Resources and Services Administration. Last year, I testified before the Subcommittee 

regarding the domestic HIV/AIDS care programs and I am happy 

to be here today to discuss ways to ensure early diagnosis and improve access to treatment for Americans living with HIV and AIDS. 

I certainly appreciate your continuing support for the Ryan White 

CARE Act programs. 

The Ryan White CARE Act is the centerpiece of our domestic response to care and treatment for low-income, uninsured, and 

under-insured individuals living with HIV/AIDS. Currently funded 

at over $2 billion, it provides primary health care, live-saving medications, and support services to individuals who lack health insurance and financial resources to provide adequate health care for 

themselves. 

As you noted, the authorization of the Ryan White CARE Act expired 6 months ago. President Bush in his State of the Union Address stressed the importance of this program and asked Congress 

to reform and reauthorize the Ryan White CARE Act and provide 

new funding to States so that we can end the waiting list for AIDS 

medicines in America. 

Since its last reauthorization, we have been able to provide antiretroviral treatment, primary care, and support services to over 

half a million people annually in the United States, Puerto Rico, 

Guam, the Virgin Islands, and eligible U.S. territories in the Pacific. In 2004, an estimated 65 percent of these individuals were racial minorities, 33 percent were women, and 87 percent were either 

uninsured or received public health benefits. The Ryan White 

CARE Act programs have provided important benefits to these populations. 

Overall, AIDS mortality is down and lives have been extended 

through HIV medications purchased through the AIDS Drug Assistance Program, also known as ADAP. Pregnant HIV-positive 

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

birth to children free from HIV infection, and thousands have received support services that have allowed them to access and remain in health care. 

Although we are making progress in providing services to people 

living with HIV, the epidemic continues and will be in need of our 

attention for some time to come. The President and Secretary understand the dynamics and severity of the epidemic and they are 

committed to ensuring the Department’s HIV/AIDS programs are 

as effective as possible in preventing infection and treating those 

who become infected. 

We have recognized that as essential as the Ryan White CARE 

Act has been to serve Americans with HIV and AIDS, it is in need 

of revitalization to safeguard its critical mission. Despite record 

levels of funding, we continue to face waiting lists for life-saving 

9

1The prepared statement of Ms. Crosse appears in the Appendix on page 55. 

funds through the ADAP and there are marked disparities in access to quality medical treatment across the country. As minority 

populations are increasing and disproportionately impacted by 

HIV/AIDS, changes to the existing systems of care designed for an 

earlier epidemic are increasingly urgent. 

Each year, CARE Act programs, primarily through grants to 

States, metropolitan areas, providers, and educators, we reach an 

estimated 571,000 people. Since AIDS was first recognized, the pattern and treatment of HIV disease has shifted. We now strive to 

manage HIV/AIDS as a chronic disease. Early diagnosis and improved access to HIV care and treatment are key to what the 

CARE Act stands for. 

The CARE Act programs are successful at counseling and testing. More than 800,000 HIV tests were administered in CARE Act 

sites. And the important thing to note is over 85 percent of the people tested in CARE Act sites returned for their results. We think 

that this is because the CARE Act sites are not only testing sites, 

but they are primary care delivery sites, as well. 

Going forward, we take great pride in the advances of HIV/AIDS 

care and treatment that have been made by the CARE Act programs over the past 16 years. However, we are humbled by the significant challenges that remain for people living with HIV/AIDS 

who have nowhere else to go for care in an age of increasing HIV/

AIDS prevalence, increasing health care costs, and a growing burden of HIV among the uninsured and under-insured. 

The Administration has emphasized five key principles for reauthorization of the CARE Act: Serve the neediest first; focus on lifesaving and life-extending services; increase prevention efforts; increase accountability; and increase flexibility. 

The President has made fighting the spread of AIDS a top priority of his Administration and he will continue to work with Congress to encourage prevention and provide appropriate care and 

treatment to those suffering from the disease. 

Today, people with HIV/AIDS are living longer, healthier lives, 

in part because of the CARE Act. In order to make this legislation 

more responsive in the future, the Administration urges Congress 

to take into account the above-stated principles in the reauthorization of the CARE Act. 

Thank you for the opportunity to discuss the Ryan White CARE 

Act today and for your dedication and interest in this important 

piece of legislation. 

Senator COBURN. Thank you, Dr. Hopson. Dr. Crosse. 

TESTIMONY OF MARCIA CROSSE,1 DIRECTOR, HEALTH CARE, 

U.S. GOVERNMENT ACCOUNTABILITY OFFICE 

Ms. CROSSE. Mr. Chairman, I am pleased to be here today to discuss the AIDS Drug Assistance Programs, or ADAPs, that receive 

funds under the Ryan White CARE Act and to provide a summary 

of our report that we are releasing today, prepared at your and others’ request. The report discusses ADAP’s program design, their 

funding sources, and drug purchasing. It also discusses our examination of State prenatal HIV testing and perinatal HIV transVerDate 0ct 09 2002 10:15 Mar 30, 2007 Jkt 028242 PO 00000 Frm 00015 Fmt 6633 Sfmt 6633 C:\DOCS\28242.TXT SAFFAIRS PsN: PAT
10

mission rates and State approaches to identifying and notifying 

partners of HIV-infected individuals. 

Despite progress in drug treatments and the reduction of AIDS 

mortality in the United States, challenges remain concerning the 

availability of these drugs for individuals with HIV or AIDS. Because of the variation in program criteria, an individual eligible for 

ADAP services in one State may not be eligible for or receive the 

same ADAP services in another. ADAP income ceilings for individuals, program enrollment caps, and drug formularies vary considerably among ADAPs. 

For example, each ADAP determines a maximum income level or 

income ceiling as a criterion for an individual’s eligibility for enrollment. ADAPs reported income ceilings that range from 125 percent 

of the Federal poverty level in North Carolina to 556 percent in 

Massachusetts. Sixteen ADAPs reported that they had limits on 

the assets that individuals enrolled in the program are allowed to 

have. Twelve ADAPs reported having caps on program enrollment 

or on amounts expended per individual. And the total number of 

drugs ADAPs included on their formularies ranged from 20 in Colorado to 1,000 in Massachusetts, New Hampshire, and New Jersey. 

In order to make maximum use of the funding they receive, 

ADAPs are expected to secure the best prices available for the 

drugs on their formularies. ADAPs may, but are not required to 

purchase their drugs through the 340B Federal drug pricing program, under which drug manufacturers provide discounts on certain drugs. HRSA has identified the 340B prices as a measure of 

ADAPs’ economical use of grant funds, but HHS does not disclose 

340B prices to the ADAPs. 

We found that some ADAPs reported prices that were higher 

than the 340B prices for selected HIV/AIDS drugs. However, these 

reported prices may not have reflected any rebates ADAPs eventually received. While HRSA is responsible for monitoring whether 

ADAPs obtain the best prices available for drugs, it does not routinely compare the drug prices ADAPs report to the 340B prices, 

and without the final ADAP rebate amount on a drug purchase, 

HRSA cannot determine whether the final drug prices paid were at 

or below the 340B price. 

We are recommending that HRSA require ADAPs to report the 

final prices they paid for drugs, net of any rebates, and that HRSA 

routinely determine whether these prices are at or below the 340B 

prices. 

Turning to approaches to reduce the spread of HIV, all 50 States, 

the District of Columbia, and Puerto Rico have policies or have enacted laws regarding HIV testing of pregnant women to help reduce the transmission of HIV to newborns. However, among the 

eight States we examined, three States followed CDC’s recommendations to routinely include HIV tests in standard prenatal 

testing while allowing a woman to refuse to be tested for HIV. The 

other five States require that a woman specifically consent to an 

HIV test, usually in writing, before the test can be performed. But 

two of these States, as you noted, Connecticut and New York, have 

mandatory newborn testing if the mother has refused an HIV test. 

Six of the eight States report that the number of HIV-positive 

newborns has declined, however, in a positive development. 

11

1The chart referred to appears in the Appendix on page 132. 

Among other efforts to reduce the transmission of HIV, States 

used various approaches in eliciting information from known HIVinfected individuals about their sexual partners. But the participation of these individuals varies and not all partners can be reached 

to be notified. For example, CDC data showed that States interviewed between 46 percent and 100 percent of known HIV-infected 

individuals to elicit the identities of their partners and were able 

to notify between 42 percent and 83 percent of those partners that 

they had been exposed to HIV. 

Further, in the 12 States we examined, 10 have statutory or regulatory provisions that require or permit the notification of partners, including spouses, without the consent of the known HIV-infected individual. However, in the remaining two States, Massachusetts and Minnesota, public health officials or the health department may notify partners, including spouses, only with the 

consent of the HIV-infected individual. 

Mr. Chairman, this concludes my prepared remarks. I would be 

happy to answer any questions you or other Members of the Subcommittee may have. Thank you. 

Senator COBURN. Thank you, Dr. Crosse. 

Dr. Fenton, I am going to start with you, if I may. Four years 

ago, Dr. Gerberding stated in her first speech as Director of CDC 

that 40,000 or more new HIV infections occur every year in the 

United States and it was unacceptable and our goal is to substantially reduce and ultimately prevent. If you look at that chart 1 and 

the fact that CDC now admits at least 40,000 new infections every 

year, which has not declined, what is the explanation for that? 

Dr. FENTON. In reviewing that chart and in assessing our successes of our prevention interventions, I think there are two key 

questions that we need to ask ourselves. First, are we doing the 

right prevention interventions or do we have effective interventions 

and are we delivering them at the right level to have the necessary 

impact on our HIV epidemic? Or, second, as the epidemic is evolving, are we actually targeting our prevention interventions in the 

right areas for the right communities at risk? 

CDC has a program of continually evaluating the effectiveness of 

our prevention programs. Over the past decade, we have been involved in monitoring the outcomes of our prevention activities and 

using our surveillance data to evaluate the effectiveness of our prevention interventions. We have systematically developed effective 

behavioral interventions and we have embarked upon a program of 

diffusing these effective interventions to communities and individuals at high risk of acquiring HIV. 

We have also used core prevention indicators to evaluate the effectiveness of programs at the local level. Program consultants are 

required to interview our grantees to ensure that local implementation of our prevention programs are being done as anticipated. 

Senator COBURN. Let me ask it in a little different way. We are 

going to spend over $20 billion this year in this country on domestic HIV/AIDS and we are climbing every year as we work on this 

very difficult problem. When are we going to see a decline in the 

new infections? Maybe we are not having more new infections, 

12

maybe we are diagnosing more that were in the resilient population. That may be the answer. But if you were an average American out there paying their taxes and—$18 billion to $20 billion, we 

started out very low and through the great work of AIDS activists, 

we are where we are today, when are we going to see that go this 

way? And this opinion, you are not going to be held to this. Just 

give us an opinion. [Laughter.] 

I have got 4 more years here. I promise I won’t hold you to it. 

Dr. FENTON. I am not in a position to say exactly when we are 

going to be seeing a decline or a change in the epidemic curve, but 

I do know that we have had successes in preventing HIV transmission in some areas. We are beginning to see declines in new 

HIV diagnoses among injecting drug users. And earlier in my testimony, I mentioned the declines and the successes in perinatal HIV. 

Senator COBURN. Right. 

Dr. FENTON. More recently, our surveillance data is suggesting 

that we are seeing reductions in new diagnoses among AfricanAmerican women. So taken as a whole, it may be very difficult to 

predict exactly when we will see declines in new diagnoses, but we 

are seeing successes. I think the key is actually identifying what 

elements of our—why are we seeing the successes——

Senator COBURN. What is working and what isn’t? 

Dr. FENTON [continuing]. And ensure that we either extend these 

and continue to implement these nationally. 

Senator COBURN. Fifteen months ago, CDC unveiled its Advancing HIV Prevention Initiative. How many States have enacted the 

recommendations and what is being done to assist all the States 

to adopt those recommendations? And by the way, for our audience, 

those are recommendations that just follow common public health 

precepts that have been proven for years to work which were just 

introduced by CDC 15 months ago. 

Dr. FENTON. The Advancing HIV Prevention Initiative was actually launched in 2003 and there are a number of interventions 

which were included in those, including universal HIV testing of 

pregnant women, confidential partner notification, and rapid testing. I would like to report on our progress on each of these. 

Senator COBURN. OK. 

Dr. FENTON. As far as our interventions for pregnant women are 

concerned, in 2004, CDC recommended implementation of an optout testing approach in which women are notified that an HIV test 

will be routinely included in the standard battery of tests to be 

done. Since CDC’s recommendation for opt-out testing, seven 

States have specifically authorized opt-out prenatal HIV screening 

in legislation. In November 2005, the American College of Obstetricians and Gynecologists further published a legislative tool kit of 

State laws and suggested legislative language that should be used 

to actually aid the requirement of opt-out testing for pregnant 

women. 

As far as monitoring States and what exactly is happening as far 

as HIV testing and counseling is concerned, CDC conducted a survey and analysis of all relevant State statutes addressing HIV testing and counseling. An electronic database of these State laws will 

be posted on the agency website within the next month. This information really has provided a very comprehensive inventory of laws 

13

which really gives a sense of where States are in terms of requiring 

mandatory HIV testing, pre-testing and post-test counseling, and 

testing of pregnant women. 

As far as our progress on partner notification is concerned, it is 

a condition for all States receiving Federal funds for HIV and STD 

prevention that they should have confidential partner notification 

as a component of partner counseling and referral services. So all 

CDC grantees are expected to deliver on this intervention. 

And then finally, as far as rapid HIV testing is concerned, all 

CDC grantees are encouraged to use their HIV prevention funds to 

purchase rapid HIV tests for various clinical and non-clinical sites. 

Senator COBURN. Dr. Hopson, Department of HHS has announced the Ninth Annual Ryan White CARE Act Grantee Conference in August, and according to the invitation letter, all participants and presenters are responsible for their own travel, hotel, 

and registration fees; which should come from CARE Act funds. I 

have two questions for you. One is, is it really a necessity to have 

that conference every year when the bill hasn’t changed? And number two, couldn’t that money be much better spent by redirecting 

it to an ADAP program? 

Ms. HOPSON. Thank you. The Ryan White CARE Act grantee 

meeting is held every other year, so we don’t hold it every year, 

and we began holding it when the CARE Act programs were combined into the HIV/AIDS Bureau. So this is the fourth biannual 

meeting. What we have found is that it is the time where we are 

able to provide technical assistance to our grantees. 

As I said in my testimony, this is a time when the CARE Act 

hasn’t changed but the environment in which we are operating has 

changed. There are lots of changes in Medicare. There are changes 

in Medicaid. There are changes in other parts of the health care 

financing world, as well. There are also clinical changes and clinical updates. And so we use this as a time to provide technical assistance to our grantees. Because we have so many grantees, we 

are not able to get out and visit each one of them and we find that 

when we bring them together, they are able to learn from each 

other. This is a time that is well spent and money that we also believe is well spent. 

Senator COBURN. How much money is it? 

Ms. HOPSON. I will have to provide that for the record. 

Senator COBURN. Thank you. The President’s reauthorization 

principles that he put forward would require at least 70 percent of 

all CARE Act funds to be spent on primary medical care and treatment, and I heartily endorse that. Titles II and III are already 

spending more than 75 percent of their funds on such purposes, according to GAO. Title I does not, and I understand that most Title 

IV consumers already have their primary care paid for by either 

SCHIP or Medicaid. How do you envision the 75 percent primary 

care floor affecting the roles and services impacted by Title I and 

Title IV? 

Ms. HOPSON. For Title I, we do realize that most of the money 

does pay for primary care medical services or medications and we 

believe most of the grantees—when you look at it overall about 54 

percent is the amount that they spend on primary care services. So 

we believe that if the law does pass and it says 75 percent must 

14

be spent on primary care and treatment, then the grantees will 

have to look and see how they will reallocate funds so that they 

could meet that requirement. 

In terms of Title IV, we realize that there are many of the patients who are eligible for Medicaid and receive their care paid for 

that way and we are looking to see what would be included in the 

primary care services. We broadly define that as not only services 

that are provided for people when they come in for care, but also, 

we need to provide outreach to get people in care and keep them 

in care. Those services are vitally important, particularly when you 

look at the Title IV population, which is largely minority women 

and their children. There are unique challenges that they face in 

order to get to care and to remain in care, and so we look at a 

package of services as part of comprehensive primary care. The 

Title IV program will try to reprioritize those services, or prioritize 

such that the Ryan White CARE Act does pay for the primary care 

services and the necessary support services to get people into care 

and to keep them in care. 

Senator COBURN. OK. I have gone over my 5 minutes. Senator 

Carper, I am going to come back for another round. 

Senator CARPER. Good. Thanks. On our second panel, one of our 

panelists is Beth Scalco, who is, I think, the Director of the Louisiana HIV/AIDS program. Louisiana is, as we all know, now struggling with the aftermath of Hurricane Katrina, so it is arguably 

necessary that they have the flexibilities to address some of the 

new challenges. 

I have two questions. One is does the current Ryan White program do enough to give States like the Gulf Coast States and the 

localities the flexibility to address their specific needs? That is my 

first question. And second, is there anything more that we ought 

to be doing in this area? 

Dr. Hopson would you start with that and we will just take it 

from there. 

Ms. HOPSON. Hurricane Katrina was certainly something that we 

have never seen the likes of before in this country and there are 

many systems that were impacted by that, including the Ryan 

White CARE Act program. There were many, many evacuees from 

New Orleans and the other parts of the Gulf region. Included in 

that evacuation were people who are living with HIV and AIDS. 

Many of them went to other parts of Louisiana, Alabama, Mississippi that were not impacted by the hurricane. Others went to 

neighboring States like Texas or Georgia, but the evacuees ended 

up in many places around the country. 

The challenge has been to find all of those patients who were enrolled and receiving care in the affected area and get them into 

care. 

Senator CARPER. That is a pretty big challenge. 

Ms. HOPSON. That is a big challenge, and one of the concerns 

that we have is that we have not found all of those patients. So 

that is a continuing challenge that we have. We are continually in 

contact with the States and with all of our grantees around the 

country to ask if they are still receiving patients who were displaced. 

15

Senator CARPER. Any idea if they have found as many as half of 

them, three-quarters of them? Just roughly? 

Ms. HOPSON. We do have that information. I just don’t have it 

off the top of my head. 

Senator CARPER. All right. 

Ms. HOPSON. I can give you some specifics. We know that in 

Texas, there are over 800 evacuees who are receiving CARE Act 

services. Louisiana received 700 evacuees from New Orleans. We 

let the grantees know that they were able to have some flexibility 

so that Title I New Orleans dollars were able to be used by the 

Title II State. Also, Louisiana Medicaid provided funding to the 

Texas ADAP to purchase pharmaceuticals for Louisiana Medicaideligible clients. In Texas, they really did a yeoman’s job of decreasing the complexity of people being eligible for ADAP and were able 

to very quickly get people enrolled in ADAP, and many of the pharmaceutical companies, as well, immediately stepped up to the plate 

and were able to provide some free medications for people who 

were evacuees. 

So again, there were lots of things that were done. We were limited, though, by the statute. There were people who were asking 

me constantly, well, can’t you just waive this and waive that? And 

I said, no, I don’t have the power to waive the statute. We still 

have to follow the law. 

Senator CARPER. Excuse me for interrupting, but as we look toward reauthorizing the Act, and people especially like my colleague 

here, shouldn’t we be involved along with folks on the HELP Committee? What ought we be doing to provide more flexibility, if that 

is appropriate? 

Ms. HOPSON. Yes. 

Senator CARPER. You can answer that for the record, but it is a 

timely question. 

Ms. HOPSON. It is a great question. We have been having lots of 

discussions within the Department and I think I would like to provide that answer for the record. 

Senator CARPER. Sure. That would be great. 

Let me go back, if I could, to Dr. Fenton. I don’t think you have 

been asked enough questions yet, so I will ask you a few more. I 

understand CDC has suggested that HIV screening be conducted in 

maybe not all health care settings, but a whole lot of them, unless 

the patient declines. This seems like a laudable goal, but could you 

speak a little bit about how this would work on a practical level 

and how much it might cost to implement that kind of an approach? Finally, how would we pay for it? It is like a three-part 

question. 

Dr. FENTON. It is. To address the first question first, which is 

which settings and how is this going to be implemented, the real 

background to this is really to begin to have a systematic strategy 

to really reduce the undiagnosed fraction of HIV in the general 

population, and we know that certainly in the American population, approximately 75 percent of individuals attend their health 

care provider or are seen by a health care provider in the previous 

year. So this is a huge opportunity for us to really escalate the uptick of HIV testing in the population. 

16

In our revised screening guidelines, the objective is to involve as 

many health care settings in this process by routinizing HIV testing and removing the barriers to HIV testing in the health care 

setting. In this respect, we are looking at involving all different 

kinds of health care settings where individuals aged 13 to 64 would 

be seen for routine health care. 

Senator CARPER. Do you have some idea how much something 

like this might cost, and finally, who might pay for it? How might 

we pay for it? 

Dr. FENTON. OK. I don’t have the figures as to how much this 

might cost and I would like to provide that for the record? 

Senator CARPER. All right. Who might pay for it? 

Dr. FENTON. We are looking at various strategies for paying for 

this. Certainly one area that we are looking at that we would be 

keen to pursue is exploring the ability for third-party payment for 

HIV rapid tests, or HIV tests, similar to other screening tests 

which are done in the population which are paid for by third-party 

payers. The objective would be to have HIV testing as being paid 

for in this manner. 

We also should remember that additional funds are being provided by the Administration through CDC to support the purchase 

of rapid tests and we will be working very closely with our partners 

at State and local government as well as other HHS agencies to ensure that rapid tests are provided in as many settings, both clinical 

and non-clinical settings, as possible. 

Senator CARPER. All right. One last question for you, Dr. Fenton. 

I understand that CDC has stated that prevention counseling need 

not be conducted in conjunction with HIV testing. It seems like 

testing would be a logical point at which to give people information 

about how to reduce the risk of HIV infection. I am wondering if 

you can give us some more detail about CDC’s thinking in this 

area. 

Dr. FENTON. Absolutely. In thinking about the future of HIV 

testing in the United States, it is important to unlink the testing 

which is being recommended in clinical settings from that which is 

being recommended in non-clinical or community settings. There 

are no plans afoot to separate prevention counseling in the nonclinical settings. However, in clinical settings, what we are looking 

at is streamlining the HIV testing process so it becomes shorter, 

more efficient, and therefore, we begin to remove some of the barriers to HIV testing in the clinical settings. 

Individuals who are diagnosed positive as a result of the HIV 

tests would still have intensive prevention counseling to enable 

them to access appropriate treatment and care and prevention 

services. So that part of the process counseling for HIV-positive individuals would not be lost. But it is crucial that if we are moving 

away from exceptionalization of HIV testing, that we really look at 

streamlining the HIV testing process, especially in clinical care settings, and removing the barriers, which are time constraints, concerns about stigmatization in providing HIV tests by health care 

providers, etc. 

Senator CARPER. Dr. Crosse, would you care to comment on Dr. 

Fenton’s response? 

17

1The chart referred to appears in the Appendix on page 133. 

Ms. CROSSE. Senator, I don’t believe that we have the information from the work that we have undertaken to be able to speak 

specifically to his remarks. If you would like us to review that, I 

would be happy to do that and provide information subsequently. 

Senator CARPER. Thank you, ma’am. 

All right, Mr. Chairman. That is it for me. Thanks. 

Senator COBURN. I think the answer to your question lies in the 

chart to your right.1 A study released last August showed what the 

cost per infection prevented by the different intervention strategies, 

and to do HIV counseling with opt-in, one-on-one, the average cost 

is $110,000. 

I find it very interesting that in 1996, the Ryan White CARE Act 

reauthorization contained a requirement that as a condition of Federal funding, all States require that a good faith effort be made to 

notify spouses of known HIV-infected patients that such spouse 

may have been exposed. We just heard testimony from Dr. Crosse 

that there are two States now that have to have the permission of 

the person who is infected, and the CDC has certified that all 

States are requiring with this requirement. 

How can CDC certify that if I am a spouse of somebody who is 

infected who doesn’t want to tell me that I am infected that they 

are, in fact, complying with the Ryan White Act? How can the CDC 

take that position in those States that require that? You don’t have 

to answer for the record. You can answer in written response, but 

it is very concerning to me because you hear Dr. Parham say she 

can’t waive the law, and yet my big problem through the years 

with CDC seems to be that oftentimes what is expedient is waived 

and what isn’t, isn’t. So I would love for you to answer that in writing for us because you all have certified that, but we have had testimony today that is something different from that. 

Ms. CROSSE. Mr. Chairman, if I could just add, in our review, we 

only examined the statutes in 12 of the States and so there may 

be additional States beyond those two——

Senator COBURN. Right. 

Ms. CROSSE [continuing]. That have similar requirements. 

Senator COBURN. The two out of the 12, you had two where the 

trump card is if I am HIV infected and I don’t want my wife to 

know, she can’t know. The law says you have to not give people 

money who do that, and yet you certify they are all in compliance. 

Something isn’t right there. 

But go back to the chart, which I think is very revealing, and I 

think what the CDC is trying to address with their specialized nonclinical setting testing and everything else is how do we spend 

money most effectively to take this large group of undiagnosed people, 300,000, and find out their status so that we don’t enlarge the 

number of people who are unknown in their HIV status who are 

HIV-positive. But I think this chart is very revealing to us to know 

where to, in fact, spend our money most efficiently. 

Dr. Crosse made some mention about 340B testing in her reports, although they can’t be sure because they don’t have discounted net prices, rebate net prices. There is some concern that 

maybe efficiency of the present dollars in ADAP programs aren’t as 

18

good as they should be because we are not getting a comparison of 

whether or not they are getting value. Based on what you have 

heard and based on what your plans are, what are HRSA’s plans 

to do about holding accountable and within the 340B to get more 

bang for our buck in terms of the dollars spent by ADAP? 

Ms. HOPSON. There are a number of things that we do currently. 

One, HRSA does require the ADAP, as a condition of their grant 

award, to participate in a cost-saving measure that is equal to or 

more economical than the 340B program. Now, the problem comes 

is that HHS cannot disclose the 340B-covered entities, such as 

ADAPs, what the prices are because of confidentiality agreements 

between the government and the drug companies. So there is that 

challenge that we have. 

Senator COBURN. But her point was that you are not working 

with a real number because the numbers they are reporting to you 

is not rebate-adjusted. Is that correct? 

Ms. HOPSON. Yes, that is correct. 

Senator COBURN. So basically, whatever you are doing with it, it 

is not a real number. So is there something you all plan on doing 

to say, you have to give us rebate-adjusted pricing? 

Ms. HOPSON. There is another program within HRSA, the Office 

of Pharmacy Affairs, and they are not part of my Bureau, so that 

is why I am turning around to make sure I get the right answer. 

I know what we are doing in the HIV/AIDS Bureau. But we are 

working with the Office of Pharmacy Affairs that manages the 

340B program to make sure that the information that we get from 

our ADAPs is the information, the net price, essentially, of the 

drugs that we purchase through the ADAPs and that we give that 

information to the Office of Pharmacy Affairs who then can give us 

a range. They can’t give us the exact price, but they can give us, 

within range, as to what price—are we paying a fair price close to 

the 340B price or not. 

There are a number of things that Dr. Duke, the HRSA Administrator, has put forward to the Department and has put in the 2007 

budget request so that we can improve the ability of the Office of 

Pharmacy Affairs to report to us and work with us so that we can 

have the accurate prices. On our end, in the HIV/AIDS Bureau, we 

are working with our grantees, the ADAPs, so that they will report 

the net price to us so that we then have an accurate number to 

compare to the 340B prices. 

Senator COBURN. So their observation has already been addressed by HRSA. 

Ms. HOPSON. Yes. 

Senator COBURN. The observation of GAO——

Ms. HOPSON. We are in the process of—this is something we 

have proposed in the 2007 budget. We don’t have that——

Senator COBURN. Dr. Crosse, would you respond to that? 

Ms. CROSSE. Our understanding based on HRSA’s response to 

our draft report was that the Office of Pharmacy Affairs was developing a system that would assist the ADAPs in determining for 

themselves whether or not they were obtaining economical prices 

in their drug purchasing, but HRSA’s response indicated that it 

would be logistically difficult and require resources that they don’t 

have to carry out the kind of oversight and monitoring that we recVerDate 0ct 09 2002 10:15 Mar 30, 2007 Jkt 028242 PO 00000 Frm 00024 Fmt 6633 Sfmt 6633 C:\DOCS\28242.TXT SAFFAIRS PsN: PAT
19

ommend they do and that this would not require the sort of manual comparison they indicated in their comments, but could be carried out electronically and could be carried out for a subset of the 

drugs. 

We, for example, in our review looked at just 10 drugs that accounted for 73 percent of the expenditures by the ADAPs so that 

they could, likewise, examine either on some rotating basis or with 

some subset that account for a substantial portion of spending, particularly on the anti-retrovirals, what the actual prices finally are 

or are paid. But our understanding, our reading of their comments 

back to us was that they did not at this time intend to do that. 

Senator COBURN. I just want the panel to know, we are coming 

back to this, because every dollar wasted is somebody not treated. 

This is something that the law says and isn’t being carried out. 

You can’t waive it and I am going to be the enforcer. So just plan 

on about 4 months from now finding out what the response is, 

make sure it is in place, because we are going to have another 

hearing to ask about it. 

If Congress does not reauthorize the CARE Act by October 1, 

what will happen to the funding of States without names reporting 

or immature reporting systems? Dr. Hopson. 

Ms. HOPSON. As you know, sir, because you were there in 2000, 

there is a requirement that by 2007, we must use HIV, not just 

AIDS, in the formula by which we distribute the Title I and Title 

II dollars. We are discussing that within the Department right now 

as to the options that we will use for those States that do not have 

that HIV data that is certified by the CDC, because we use data 

that is certified by CDC in order to make the funding decisions for 

Title I and Title II. 

Senator COBURN. So tell me again, what is going to actually happen? 

Ms. HOPSON. We are having discussions on various options now 

within the Department——

Senator COBURN. So you haven’t made a decision what is going 

to happen? 

Ms. HOPSON. That is correct. 

Senator COBURN. OK. That is what I was wanting to get to. Is 

it important what the Ryan White CARE Act said in terms of the 

2001 bill? 

Ms. HOPSON. Absolutely. 

Senator COBURN. OK. Well, I have several other questions for all 

of you. I am not going to keep you here for that. I will submit the 

rest in terms of written format. I would very much appreciate your 

response in 2 weeks, if you can, and I know those have to be 

cleared, so I am patient. 

But this one issue on ADAP pricing and comparison, whether or 

not we are getting a good deal, the drug companies don’t need to 

make any more money. They can afford to sell at a reasonable price 

to ADAPs if they can afford to sell to anybody. It is my concern 

that this be addressed very quickly because it is money going out 

of the door that shouldn’t be going out of the door. Or, it may not 

be a problem at all, but the point is, we need to know whether it 

is. The GAO seems to think it may be, but we don’t know. So I 

want to make sure that is addressed. 

20

1The prepared statement of Ms. Scalco appears in the Appendix on page 64. 

I would also invite you to stay to hear our next panel, because 

I think they have information you all can use, and oftentimes government witnesses don’t stay and they don’t have the benefit of 

really getting the feedback that would be beneficial. 

Thank you all so much for your testimony and thank you for 

being here. 

Senator COBURN. Our next panel consists of Michael Weinstein, 

who is President of HIV Healthcare Foundation, the Nation’s largest provider of HIV/AIDS medical care. Since 1986, Mr. Weinstein 

has been a leader in the fight against HIV and AIDS. As President 

and co-founder of AIDS Healthcare Foundation, he oversees a $140 

million organization whose mission is to provide cutting-edge medicine and advocacy regardless of one’s ability to pay. They currently 

serve 30,000 clients in the United States, Africa, Central America, 

and Asia. The Foundation now operates 14 outpatient AHF health 

care centers in California and Florida. They also operate seven 

pharmacies, a clinical research unit, a disease management program through the State of Florida, and the first capitated Medicaid 

managed care program for people with AIDS. 

Beth Scalco is Director of the HIV/AIDS program for the State 

of Louisiana’s Office of Public Health. The HIV/AIDS program 

under her direction has the primary responsibility for overseeing 

Louisiana’s response to the AIDS epidemic, including all prevention 

and care activities. Her office administers the Ryan White Title II 

program, including the ADAP program, the HOWPWA program, 

the Centers for Disease Control and Prevention surveillance cooperative agreements, and the State general funds for AIDS. She has 

been working in the field of HIV/AIDS since 1985. 

Welcome, both of you. Ms. Scalco, I think I will ask you to go 

first, since I introduced you second. 

TESTIMONY OF M. BETH SCALCO, DIRECTOR,1 HIV/AIDS PROGRAM, LOUISIANA OFFICE OF PUBLIC HEALTH, AND PAST 

CHAIR OF THE NATIONAL ALLIANCE OF STATE AND TERRITORIAL AIDS DIRECTORS (NASTAD) 

Ms. SCALCO. Good afternoon, Mr. Chairman. My name is Beth 

Scalco and I am the Director of the HIV/AIDS program for the 

State of Louisiana. I am also the past Chair of the National Alliance of State and Territorial AIDS Directors (NASTAD). I want to 

thank you for inviting me to speak with you today. 

State AIDS directors appreciate the longstanding support of the 

U.S. Senate for the Ryan White CARE Act programs, and assuring 

that all persons with HIV/AIDS, regardless of their geographic location, have equal access to appropriate and high-quality HIV/

AIDS services is our highest priority. I would like to share with 

you some views of my fellow State AIDS directors in addition to 

some views from the State of Louisiana. I have limited my comments to those that address increasing access to prevention services provided by State health departments, including testing and 

access to life-saving drugs provided by the AIDS Drug Assistance 

Program. 

21

As you said, Louisiana HIV/AIDS program administers the HIV/

AIDS prevention and care programs funded by both State and Federal funds. HIV infections have penetrated both our metropolitan 

areas as well as our rural areas in our State. In 2004, the State 

of Louisiana had the 11th highest number of AIDS cases reported 

and the fifth highest AIDS incident rates in the Nation. There were 

a total of 25,846 cumulative cases of AIDS reported in Louisiana 

and there are currently 14,793 individuals living with HIV/AIDS in 

Louisiana as of March 2006. 

In 2005, we identified 967 new HIV/AIDS cases in Louisiana. We 

normally identify around 1,100 cases in Louisiana, and I am sad 

to say, I do not think that HIV infection decreased. I believe that 

is a result of the impact on our ability to test in the months following Hurricane Katrina. In the Federal fiscal year 2006, Louisiana received over $22 mil- lion in Ryan White CARE Act funding. We received $6 million for 

Title II base, $15 million for ADAP, and $950,000 for our emerging 

communities, which is Baton Rouge, Louisiana. Our Title I EMA, 

which is New Orleans, received $7.4 million. We received close to 

$5 million in HIV prevention cooperative agreement funds and $1.6 

million for our surveillance cooperative agreement. The State of Louisiana contributes approximately $2.5 million 

specifically for HIV prevention activities in Louisiana. In addition, 

they contribute over $9 million for care and treatment of people 

who are HIV infected through the State’s public hospital system. 

This is in spite of Louisiana’s ongoing budget deficits both prior to 

the hurricane, and I, unfortunately, have to say, I do not believe 

that they will not be able to continue this contribution as a result 

of the hurricane. 

State public health agencies serve an essential and a unique role 

in the delivery of HIV/AIDS prevention, care, and treatment programs. The agencies are entrusted through the U.S. law as the central authorities of the Nation’s Public Health System and as such 

bear the primary public sector responsibility for health. State Public Health responsibilities include disease surveillance, epidemiology, prevention programs, immunizations, emergency preparation, provision of primary health care services for the uninsured 

and the indigent, and overall planning and coordination, administration, and physical management of Public Health Services. 

The President’s 2007 budget includes $93 million, of which $86 

million is new funding, to increase testing in medical settings, 

make voluntary testing a routine part of medical care, and to create new testing guidelines, models, and best practices. The President’s initiative will prioritize funding for regions with the highest 

number of new cases as well as focusing on incarcerated persons 

and injection drug users. 

State AIDS directors support the President’s request for $86 million in new funding for domestic HIV prevention and believe that 

this funding should be allocated via the prevention and surveillance cooperative agreements with State and local health departments. State and local health departments already fund HIV testing in a variety of venues in communities and they are in the best 

position to maximize the potential of the President’s testing initiative. 

22

However, testing alone will not prevent new infections. Funds 

must be increased to make up for 3 years of cuts, which have hampered the ability of State health departments to implement CDC’s 

Advancing HIV Prevention Initiative. 

In addition, resources for surveillance are sorely needed, as the 

Federal Government shifts prioritization from AIDS to HIV case reporting and funding for core surveillance activities has eroded significantly in recent years. 

State AIDS directors support the delivery of HIV prevention 

services in primary care settings as a standard of care. Studies indicate that HIV-positive individuals who are aware of their status 

take steps to protect their partners from infection, with 70 percent 

reporting reductions in risky behaviors. Health departments use 

partner counseling and referral services as one tool to identify HIVpositive individuals and ensure their linkages to medical support 

and prevention services. 

Research has found PCRS to be a very cost-effective strategy for 

identifying HIV-infected persons who are unaware of their 

serostatus. State AIDS directors support the continuation of funding for PCRS through CDC cooperative agreements with States and 

the directly-funded cities. 

The State AIDS programs have been one of the largest implementors of HIV rapid testing programs. We have long supported 

the development and approval of rapid testing and worked collaboratively with Congress and the Administration to ensure rapid 

tests were considered for a CLIA waiver. In several jurisdictions 

and in certain settings, barriers to rapid testing exist. It is a complex testing technology. In addition, it is more costly to implement 

than traditional testing. 

The CARE Act is a safety net under other public programs, such 

as Medicaid and Medicare. The Ryan White programs must adapt 

to fill gaps particular to the individual State. ADAPs work closely 

with the State Medicaid programs and Medicare Part D to ensure 

that ADAPs remain the payer of last resort. Annually, ADAPs 

serve approximately 136,000 clients, or about 30 percent of the people living with HIV/AIDS estimated to be receiving care in the 

United States. 

In fiscal year 2005, States were dependent on State contributions 

to their ADAP programs and pharmaceutical discounts and rebates 

to sustain their ADAP programs, as the increase in Federal dollars 

for ADAPs was extremely limited. ADAPs receive the lowest prices 

in the country for anti-retroviral therapies. In 2003, NASTAD 

established the ADAP Prices Task Force to negotiate with the 

pharmaceutical industry on behalf of all ADAPs, and as a result of 

this highly successful public-private partnership, the task force 

achieved supplemental discounts and rebates beyond those mandated by the 340B program and price freezes that have resulted in 

over $300 million in savings over the past 3 years. 

Ten years after the advent of highly active anti-retroviral therapy, the lives of people living with HIV/AIDS have been greatly 

extended. Therefore, individuals are remaining on our ADAP programs for lifetimes. ADAPs across the country continue to encounter significant challenges in fiscal stability while adequately serving the growing number of people with HIV and AIDS. 

23

1The prepared statement of Mr. Weinstein appears in the Appendix on page 76. 

For 2007, State AIDS directors seek an increase of $197 million 

for ADAPs to maintain those that are currently enrolled and to 

meet the growing demand of new clients and to strengthen ADAPs’ 

abilities across the Nation to provide the PHS standard of care and 

treatment. 

Senator COBURN. Could you summarize, please? You have gone 

past your 5 minutes. 

Ms. SCALCO. Sure. I would like to summarize by saying that, first 

of all, State waiting lists for the ADAP programs are only one indicator of need, that many ADAPS have other restrictions in place, 

and to solely distribute money on the basis of a waiting list is not 

an equitable way to do it. 

I would also like to take one moment to address the issue of Hurricane Katrina and the State of Louisiana, and particularly since 

you asked the question about the flexibility provided by our Federal partners. What we found is that the flexibility was lacking and 

that, in fact, what occurred is that while we were trying to piece 

programs back together and provide services to clients, what basically was occurring is that we were also having to meet administrative requirements that could not be waived, which was not nearly 

as important as assuring that people had access to treatment and 

care. We also needed to have waivers of certain conditions of award 

and that has not been possible. The transfer of funding between 

Title I and Title II, which should have been an easy thing to do, 

actually could not be done without amending 20 contracts through 

the State of Louisiana’s contract system. 

And so in that, I would say I would appreciate in the Ryan White 

CARE Act reauthorization if there is an emergency provision that 

would address this problem. Thank you. 

Senator COBURN. Thank you. Mr. Weinstein. 

TESTIMONY OF MICHAEL WEINSTEIN,1 PRESIDENT, AIDS 

HEALTHCARE FOUNDATION 

Mr. WEINSTEIN. Senator Coburn, Senate staff and the audience, 

as President of the largest AIDS organization in the United States, 

I am deeply concerned about the lack of access to HIV medical care 

for half a million Americans. As we approach the 25th anniversary 

of the identification of the first cases of AIDS, I am troubled by our 

lack of progress in treating HIV and controlling the epidemic in 

this country. 

Our No. 1 priority in all matters relating to AIDS should be protecting the public health. With half the people who are positive not 

in treatment, including many who do not even know their status, 

we cannot control the spread of this disease nor adequately help 

the people who have it. 

AIDS Healthcare Foundation’s primary mission is the medical 

treatment of HIV in this country and across the globe, serving 

32,000 patients. In several of the communities AHF serves, HIV 

patients are dangerously underserved. As an example, Alameda 

County, which includes the City of Oakland, is only spending 10 

percent of its Ryan White CARE Act monies on primary medical 

care. The Magic Johnson Clinic, which we operate in Oakland, is 

24

largely unfunded and specialty referrals are almost impossible to 

obtain. Despite the fact that Alameda County has declared a state 

of emergency around HIV, much more money is being spent on social services than medicine. At our Magic Johnson Clinic in Jacksonville, Florida, the situation is similar. 

Ten years after the discovery of the miraculous drug cocktails 

that have made HIV a treatable illness, we are treating HIV as if 

it is a death sentence that it was in the 1980s. We reauthorized 

the Ryan White CARE Act 5 years ago without making the necessary adjustments to reflect the progress we have made in treating patients, and there are some who would have us do this again 

this year. 

We know what it takes to control this disease. We must identify 

most of the carriers and get them into treatment, and we must effectively educate the uninfected population. Despite billions of dollars a year in expenditures to combat AIDS, we are failing on all 

counts. One need merely look at the numerous countries, both rich 

and poor, that are succeeding where we have failed to understand 

why. We don’t do enough tests. We don’t provide enough money to 

treat. We are spending too much money on drugs. We are not putting sufficient responsibility on the infected person to protect their 

partners. 

Until we have treatment readily available to everyone who needs 

it, we will continue to have more and more AIDS cases. Until testing is taken out of the rarified atmosphere of an anonymous test 

site and integrated into mainstream medical care in hospitals, clinics, and doctors’ offices, we will not identify many of the people who 

are positive. Until we tell the drug companies that the U.S. Government will not write a blank check for purchasing HIV drugs, we 

will continue to have waiting lists for the AIDS Drug Assistance 

Program. Until we are honest with people about the consequences 

of becoming infected by HIV, which is not a day at the beach, as 

the drug company ads portray it as, we will fail to fight AIDS effectively in America. 

The solutions are quite simple. If you want to improve access to 

care, require that the lion’s share of Federal dollars be spent on 

treating the disease. We are doing this in Los Angeles. The result 

is an extensive network of outpatient clinics, both public and private, across the vast geography of Southern California. Alameda 

County would have the same diversity of treatment options if most 

of their money were not being spent on food, housing, transportation, case management, and everything else. 

If you want to find more positives, you need to test more people 

in a fast, convenient, and cost-effective manner. Routine testing in 

health care settings without onerous counseling requirements is 

the only way to go. 

If you want to make drugs more accessible to more patients, you 

cannot pay higher and higher prices for each new generation of 

drugs, including those that are developed at government expense, 

thus eating up most of the new money that Congress has appropriated. 

If we identify more people who are positive and get them into 

treatment, the number of new infections will go down. If it goes 

25

down below the number of deaths, then the number of people living 

with HIV will be less each year rather than more. 

We need to resolve to put the money where it is most needed to 

stop AIDS. Rural areas and cities with emerging epidemics must 

get a bigger piece of the pie. Distributing funds based on where the 

epidemic was 10 years ago will not help us fight it where it is 

found today. The people most hurt by this are people of color, who 

represent the overwhelming majority of new cases of AIDS. 

Public health and politics are a dangerous mix. Too many decisions about how to address AIDS have been made on the basis of 

how one constituency or another must be appeased. This has led 

to a piecemeal, half-hearted approach that has led us to where we 

are now. There is no more fundamental function of government 

than the protection of the public health. 

I strongly urge the Congress to reauthorize the Ryan White 

CARE Act in a fashion that will protect generations to come from 

this devastating illness, and I would ask you to take another look 

at other areas of AIDS spending, such as vaccines and research, 

where there is enormous waste of public resources. If these changes 

are adopted now, I am confident that in the United States—this 

has happened in a country like Uganda, that I returned from last 

week and I have visited eight times—we will have less AIDS down 

the road rather than more. Thank you. 

Senator COBURN. Thank you. 

Ms. Scalco, I may have heard you wrong, and I skimmed your 

testimony. Was it your testimony that rapid testing is more expensive than standard counseling testing and results? Is that your testimony? 

Ms. SCALCO. Rapid testing is more expensive to implement than 

doing Orasure testing and it has to do with the cost of the kit and 

the cost of the controls and the cost of the other supplies related 

to rapid testing. 

Senator COBURN. As compared to an Orasure test? 

Ms. SCALCO. Yes. 

Senator COBURN. OK, which can be, in fact, done very easily? 

Ms. SCALCO. Yes. However, with the Orasure, you have to wait 

approximately 2 weeks for results. We are very much in favor of 

rapid testing. It has given us the ability to get results to people 

much quicker and it assists with people who don’t return for their 

results. 

Senator COBURN. We know many thousands of people don’t come 

back every year——

Ms. SCALCO. Right. 

Senator COBURN [continuing]. Who test positive. 

Ms. SCALCO. So, yes, we would like to implement more rapid 

testing. 

Senator COBURN. But you are looking at the cost of the test only. 

You are not looking at the cost of the test to identify. 

Ms. SCALCO. Yes. We are looking at the costs of the actual test 

as being more expensive. 

Senator COBURN. But the cost to identify that somebody is HIVpositive, a rapid test is far less expensive than the other——

Ms. SCALCO. That is correct. 

Senator COBURN. OK. I wanted to clarify that. 

26

Mr. Weinstein, we have known each other for quite some time. 

You just espoused in your testimony a true public health approach 

to HIV. My thought on this as I listened to the testimony from 

CDC, 10 years ago, I tried to get the CDC to do testing for newborn 

infants. It was blocked. The American College of Obstetricians and 

Gynecologists was against it. Gary Ackerman and myself, bipartisan, one Democrat liberal, one Republican conservative, were totally blocked by the political forces. 

So I take what you say very seriously, but my response is, how 

do we get other people embracing public health strategies instead 

of political strategies when it comes to HIV? How do you help me 

do that? 

Mr. WEINSTEIN. Just in the last 2 weeks, we passed historic legislation in California to bring about names reporting for the first 

time. It took us a long time, but we built a coalition and in the end, 

it was unanimous. 

Senator COBURN. Why did that happen? 

Mr. WEINSTEIN. It happened, first of all, I believe immodestly, 

because groups like us were willing to stand up and say it was necessary. I think also, when we enacted the code system, it was horrible. And then lastly, the threat of losing Ryan White CARE Act 

funds. But whatever it took, it happened. 

We have a bill in the legislature now to simplify testing. We are 

talking about routine testing. Let me tell you how it actually works 

in the field today. It takes longer to do a routine test because of 

the regulations of CDC and the State of California than it took previously to do the other test. It takes 40 minutes to do a test. Now, 

how many people can we test if we do that? 

Also, in this country, if you want to get a free test in most places, 

you are required to answer a long list of intimate sexually explicit 

questions to a total stranger. If you go to a doctor, you don’t have 

to do it. But if you want to do it in a public setting, the price you 

have to pay is to answer questions about the most intimate aspects 

of your life. I don’t think that is right. 

Also, it was said earlier by the CDC that in a doctor’s office, we 

are going to uncouple counseling from testing. But in the public 

setting, we are not going to do it. Well, that is wrong, I would say, 

because 80 percent of the people we test, and we have the largest 

testing program in California, are repeat testers. No. 1, they have 

the information, and No. 2, the last word they hear in that counseling session is ‘‘negative’’ or ‘‘positive.’’ If a person is positive, 

they need intensive counseling not just on that occasion, but following it, as well, to make sure they get into care. We have to be 

practical. 

If we are actually going to test more people, we have to do it differently, and also, I would say, I am sure this will not be a surprise 

to you to hear, but what is enacted in Congress is not implemented 

in many cases. The reality is across this country that women are 

not informed that their husbands or boyfriends are infected with 

HIV. Most women who we treat, and we have a large women’s program, have no known risk factor for HIV. I don’t know how long 

we have been talking about it, but it is not happening. And I think, 

again, going back to your question about how we enacted names reVerDate 0ct 09 2002 10:15 Mar 30, 2007 Jkt 028242 PO 00000 Frm 00032 Fmt 6633 Sfmt 6633 C:\DOCS\28242.TXT SAFFAIRS PsN: PAT
27

porting, unless there is a concrete penalty for not doing it, it will 

never be done, and I think that is a terrible thing. 

Senator COBURN. Why is that? I mean, if this is a public health 

strategy we use in other areas, why is it that CDC won’t move to 

a common sense public health strategy that works? I am not saying 

that they haven’t made some movement. They have, and I compliment them on that. But I am the author of informed science 

about the effectiveness of condoms that passed this Congress in the 

year 2000 which still hasn’t been implemented by the CDC saying 

people ought to know the level of protection they get from a 

condom. With HIV, it is wonderful. It is great. With many other 

diseases, it is not. But that is never a part of the counseling. 

The point being is how do we get to the point where we embrace 

public health strategies where we can save lives, where we can prevent, in fact? How do we move past the politics? In other words, 

you are out there on the activist side of this. Ms. Scalco is on the 

implementation side of it. How do we move to where we get policies 

that are efficient and effective, that save lives, move the ball forward, spend the money where it is going to give us the best return 

in terms of life and quality of life? How do we move to that? How 

do we build that? 

Mr. WEINSTEIN. Well, I would argue that since we are fighting 

AIDS as a global effort, and I know there is always a tension between States’ rights and Federal directives, but there are laws in 

California and elsewhere that prevent many of these things from 

being done, as you heard earlier. Therefore, I think that because 

you can’t fight AIDS town by town and city by city and State by 

State, I think there ought to be a Federal standard that is enforced, at least in some of these areas. 

And I think that when it comes to partner notification, it 

shouldn’t be voluntary, because if there is a group of sexually active people and they know that they have a risk, they are making 

that as an informed choice. But a woman who is not aware that 

her husband or a woman who is not aware that her boyfriend is 

using drugs or is bisexual is not able to make that choice. I think 

that is a societal obligation and I don’t see any problem, really. 

Given the fact that the Federal Government is the primary funder, 

I don’t see a problem with the Federal Government requiring in exchange for that funding that this be universal. 

Senator COBURN. If somebody is diagnosed with syphilis in one 

of your clinics, is there mandatory reporting of that? 

Mr. WEINSTEIN. Yes. 

Senator COBURN. Is there partner notification? 

Mr. WEINSTEIN. Ineffectively, but it is supposed to. It is not done 

effectively, but yes, there is. 

Senator COBURN. It is supposed to be, though? 

Mr. WEINSTEIN. It is supposed to be. It is done to some extent, 

but not as fully as it should be. 

Senator COBURN. But it is supposed to be. 

Mr. WEINSTEIN. Yes. 

Senator COBURN. And there are statutes and regulations to back 

that up. 

Mr. WEINSTEIN. Yes. 

28

Senator COBURN. Would you consider HIV more deadly than 

syphilis? 

Mr. WEINSTEIN. Oh, there is no question about that. 

Senator COBURN. So why would we not have the same policy for 

a disease that is more deadly? 

Mr. WEINSTEIN. How I look at it is if you look back over 25 years 

and you look at the ineffective Federal response, you look at the 

stigma and discrimination that was even more intense then but 

still exists now, myself and many activists felt that the first order 

of business was privacy, protection, and rights. I think that what 

the problem is, that we had a revolution in treatment of HIV and 

when the disease goes from being a death sentence to being a manageable illness, things change. When you look back historically 

about how we used to handle breast cancer, when Betty Ford and 

Nancy Reagan came out publicly about it, all of a sudden, the paradigm shifted and now there is public discussion and advocacy. It 

is totally transformed. 

So, I mean, it takes a while to catch up to these technological 

changes, but I think guidance needs to be given, again, by the Federal Government, which is the most expert. The Centers for Disease Control is the most expert. They know what works. I think 

they should give that guidance. 

Senator COBURN. Thank you. Ms. Scalco, you all have an EMA 

in New Orleans. Were funds transferred from that EMA to help 

you with some of the programs that you had during the midst of 

this hurricane and the things that followed thereafter and the disruption in care and treatment for patients? 

Ms. SCALCO. Yes. We ultimately were able to transfer funds 

through contractual arrangements so that the funding could follow 

clients who had evacuated to other parts of the State. 

Senator COBURN. Is Louisiana put at a disadvantage because 

under the former formula we are using former AIDS diagnosis instead of HIV? Would Louisiana benefit in terms of funding formulas if the basis was where the disease is now and not where it 

used to be? 

Ms. SCALCO. We believe that we may benefit. We believe that we 

could have benefitted if that had been instituted earlier in the epidemic. I think right now, we need to see where other States stand 

in terms of their HIV infections. But we definitely——

Senator COBURN. We have run those numbers. You will benefit, 

I promise you. 

Ms. SCALCO. Yes, we may benefit, and in actuality, we are serving people who are HIV infected and so we would like them counted in the formula distribution. 

Chairman COBURN. I have several other questions, but I am 

going to shorten our hearing because we have something on the 

floor at 4 o’clock. I want to thank you for your testimony. I am committed for us to getting the Ryan White CARE Act reauthorization. 

It doesn’t have to be mine. It does need to address the public 

health aspects of this. It does need to address diagnosis, prevention, but also care and medical treatment of those who have it. We 

know this is a disease that can be controlled. We also know that 

with the early testing, we can markedly decrease the number of potential infections in the future coming from that one vector, and so 

29

it is important that we all figure out where we can find the most 

common ground and get this to happen before the end of this year. 

I appreciate your work, both of you, in terms of trying to get this 

done, and the others that have been here today. My commitment 

is to work to get that done. 

Thank you very much. The hearing is adjourned. 

[Whereupon, at 4:07 p.m., the Subcommittee was adjourned.] 

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