S. Hrg. 109–419

ADDRESSING DISPARITIES IN THE FEDERAL

HIV/AIDS CARE PROGRAMS

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

FIRST SESSION

JUNE 23, 2005

Printed for the use of the Committee on Homeland Security 

and Governmental Affairs

(

ADDRESSING DISPARITIES IN THE FEDERAL HIV/AIDS CARE PROGRAMS

U.S. GOVERNMENT PRINTING OFFICE

WASHINGTON : 

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

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

Fax: (202) 512–2250 Mail: Stop SSOP, Washington, DC 20402–0001

22–197 PDF 2006

S. Hrg. 109–419

ADDRESSING DISPARITIES IN THE FEDERAL

HIV/AIDS CARE PROGRAMS

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

FIRST SESSION

JUNE 23, 2005

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 D. 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 Lautenberg .......................................................................................... 3

Senator Carper ................................................................................................. 18

Prepared statement: 

Senator Akaka .................................................................................................. 31

WITNESSES

THURSDAY, JUNE 23, 2005

Robert S. Janssen, M.D., Director, Divisions of HIV/AIDS Prevention, National Center for HIV, STD and TB Prevention, Coordinating Center for 

Infectious Diseases, Centers for Disease Control and Prevention, U.S. Department of Health and Human Services .......................................................... 5

Deborah Parham Hopson, Ph.D., Associate Administrator, HIV/AIDS Bureau, 

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

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

Michael Montgomery, Chief, Office of AIDS, California Department of Health 

Services, and Chair, National Alliance of State and Territorial AIDS Directors ........................................................................................................................ 11

Marcia G. Crosse, Ph.D., Director, Health Care, U.S. Government Accountability Office ......................................................................................................... 15

ALPHABETICAL LIST OF WITNESSES

Crosse, Marcia G., Ph.D.: 

Testimony .......................................................................................................... 15

Prepared statement .......................................................................................... 59

Hopson, Deborah Parham, Ph.D.: 

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

Prepared statement .......................................................................................... 43

Janssen, Robert S., M.D.: 

Testimony .......................................................................................................... 5

Prepared statement .......................................................................................... 32

Montgomery, Michael: 

Testimony .......................................................................................................... 11

Prepared statement .......................................................................................... 49

APPENDIX

Letter sent to Mr. Walker, dated June 23, 2005 ................................................... 106

Chart entitled ‘‘$300 Billion in Revenue, $300 Million in Federal Research 

Funding,’’ submitted by Senator Coburn ........................................................... 108

Chart entitled ‘‘EMA Funding Amounts per AIDS Case, fiscal year 2004,’’ 

submitted by Senator Coburn ............................................................................. 109

Hearing Background Materials submitted by Senator Coburn: 

(1) Ryan White CARE Act Background ....................................................... 111

(2) HIV/AIDS Statistics ................................................................................ 133

(3) Federal HIV/AIDS Spending .................................................................. 139

(4) HIV Reporting ......................................................................................... 164

(5) AIDS Drug Assistance Programs ........................................................... 290

(6) Advancing HIV Prevention ..................................................................... 313

(7) Baby AIDS ............................................................................................... 339

(8) Rapid HIV Tests ...................................................................................... 380

(9) Hold Harmless ......................................................................................... 420

(10) Submitted Testimony .............................................................................. 430

Page

IV

Questions and responses for the Record from: 

Dr. Janssen ....................................................................................................... 443

Ms. Hopson ........................................................................................................ 455

Mr. Montgomery ............................................................................................... 458

Ms. Crosse ......................................................................................................... 464

(1)

ADDRESSING DISPARITIES IN THE FEDERAL 

HIV/AIDS CARE PROGRAMS 

THURSDAY, JUNE 23, 2005

U.S. SENATE, 

SUBCOMMITTEE ON FEDERAL FINANCIAL MANAGEMENT,

GOVERNMENT INFORMATION, AND INTERNATIONAL SECURITY, 

OF THE COMMITTEE ON HOMELAND SECURITY

AND GOVERNMENTAL AFFAIRS,

Washington, DC. 

The Subcommittee met, pursuant to notice, at 2:33 p.m., in room 

SD–562, Dirksen Senate Office Building, Hon. Tom Coburn, Chairman of the Subcommittee, presiding. 

Present: Senators Coburn, Carper, and Lautenberg. 

OPENING STATEMENT OF SENATOR COBURN 

Senator COBURN. The hearing will come to order. Senator Carper 

is on his way I understand. So we do not delay our panelists and 

those testifying, we will start. 

Today’s hearing will examine the financial status of the Ryan 

White CARE Act, the Nation’s largest provider of AIDS-specific 

services, which Congress is expected to reauthorize later this year. 

I had the privilege of authoring the 2000 reauthorization of this 

important law and, as a practicing physician, I have cared for numerous patients with HIV who relied upon the CARE Act for their 

medical needs. 

Twenty years ago, I delivered a baby girl who would become the 

first child I ever delivered to die from AIDS. I discovered she was 

infected with HIV after I diagnosed her mother with full-blown 

AIDS and a full-blown pneumocystis infection. The mother died 21⁄2

weeks after we learned she had the disease. Her daughter struggled through 7 years of treatment before she succumbed to the 

same fate as her mother. 

Back then, much was still not known about HIV and AIDS. Few 

medical therapies were available to treat the disease. The epidemic 

was believed to be almost entirely centered in a few metropolitan 

areas and among very specific groups of high-risk individuals. Even 

within the public health community, fear and lack of knowledge 

about this new disease left many of those living with the virus unable to access the care that did exist and fear of stigmatization 

kept many others from even seeking testing or treatment. 

Today, HIV affects every State in our Nation, and the virus does 

not discriminate against any particular race, gender, age or sexual 

behavior. Medical breakthroughs, however, have dramatically 

2

transformed HIV infection for many into a chronic, manageable disease and, thereby, have delayed the onset of AIDS. 

In 1990, Congress passed the Ryan White CARE Act to provide 

for the unmet health needs of persons living with HIV disease. The 

CARE Act was named after Ryan White, an Indiana teenager 

whose courageous struggle with HIV/AIDS and against AIDS-related discrimination, helped educate our Nation. 

While the face of AIDS has changed, our Federal response has 

been slow to adapt to those changes. Funding for the CARE Act 

has increased dramatically from $257 million in 1991 to over $2 

billion in 2005. Yet thousands of Americans with HIV are on waiting lists for access to life-saving AIDS medications, and many others face formulary restrictions. And while patients in Kentucky and 

West Virginia have died while on waiting lists for treatment provided by the AIDS Drug Assistance Program, one of the metropolitan areas is actually receiving CARE Act funds for the deceased. 

Furthermore, tens of millions of CARE Act dollars go unspent 

annually in some jurisdictions, while other States find themselves 

faced with cutting patients’ access to life-saving AIDS drugs. These 

disparities have been created by a number of factors. First, the 

CARE Act continues to distribute Federal funds based not upon the 

number of people with HIV but rather AIDS, the end stage of HIV 

infection. It often takes up to 10 years for AIDS to develop after 

HIV infection, and now, thanks to new innovations, even later. 

Because AIDS cases comprise only a fraction of the total population of those living with HIV, this misplaced emphasis as a basis 

for the CARE Act funding ignores the vast majority of those with 

HIV. These affected communities are being ignored and not receiving a fair share of Federal support. 

Studies have shown that those with HIV but not AIDS are much 

more likely to be women, African-American, Hispanic, and those 

who live in rural areas. 

Incorporating HIV data into funding formulas and prevention 

strategies will ensure we stay in front of the disease, and that resources are directed towards where the disease is headed rather 

than where it was a decade ago. 

In 2000, Congress sought to eliminate these disparities and treat 

all people with HIV/AIDS equally under the CARE Act—by incorporating all those living with HIV, rather than just those diagnosed 

with AIDS, in funding formulas. The law requires that beginning 

no later than fiscal year 2007, cases of HIV disease reported to and 

confirmed by the Director of the Center of Disease Control and Prevention as sufficiently accurate and reliable will be the basis for 

CARE Act funding priorities and formulas. 

Funding disparities have also been created by a ‘‘hold-harmless’’ 

provision in Title I of the CARE Act. This hold-harmless provision 

was intended to ensure that no eligible metropolitan area (EMA) 

suffered from dramatic funding decreases from one year to the 

next. While well intentioned, this hold-harmless provision has ironically caused harm in many areas, and all but one of the 51 EMAs 

would fare better if the hold-harmless provision was eliminated altogether. 

Last year, the San Francisco EMA received 92 percent of all 

hold-harmless funding. As a result, San Francisco receives twice 

3

the amount per AIDS case as every other EMA, and actually received funding for AIDS patients that have long since passed away. 

The city finds itself in a unique position where it must find ways 

to spend excess money on nonessential services while its reported 

AIDS cases continue to drop. 

In sharp contrast, the largest AIDS service provider in the country in Washington, DC, the D.C. EMA, is faced with dire financial 

problems that have forced the closing of several offices, and massive staff layoffs, despite a growing population affected by HIV/

AIDS. 

In addition, some States benefit from ‘‘double countings’’—when 

AIDS cases are actually counted twice, once for funding under Title 

I and again under Title II. States that receive Title I funding receive 38 percent more per AIDS case than States without an EMA. 

Beyond simply addressing the formulas to ensure funding equity, 

services provided by the CARE Act must also be updated. When it 

became law 15 years ago, few medical therapies existed and the 

CARE Act primarily provided social services and end-of-life care for 

those with HIV/AIDS. What wonderful progress we have made. 

Since that time, medical breakthroughs have contributed to a 

great transformation in the lives of those with HIV. AIDS deaths 

have dropped significantly and, for many, HIV has become a chronic rather than a terminal disease. 

As a result, more Americans are living with HIV than ever before, and the cost of life-saving drugs is considerable. A drug combination including Fuzeon, for example, can cost between $30,000 

and $35,000 a year to treat a single patient. This incredible cost 

to provide essential treatment underscores the need to prioritize 

core medical services and effective prevention. Let me say that 

again, prioritize core medical services and effective prevention. 

The U.S. Federal Government is expected to spend nearly $20 

billion on HIV/AIDS related programs this year alone, and we as 

a Nation have committed ourselves to provide billions of dollars 

worth of medication and care services to those living with HIV in 

Africa and elsewhere. 

Clearly, there is no acceptable reason why with such a large financial investment any American living with HIV can not access 

medically necessary care. 

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

Dr. Marcia Crosse, Director of the Government Accountability Office’s Public Health and Military Health Care Issues; Dr. Deborah 

Hopson, Associate Administrator of the Health Resources and Services Administration’s HIV/AIDS Bureau; Dr. Robert Janssen, Director of the Division of HIV/AIDS Prevention of the National Center 

for HIV, STD, and TB Prevention at the Centers for Disease Control and Prevention; and Dr. Michael Montgomery, Chief of the Office of AIDS for the California Department of Health Services. 

Senator Lautenberg. 

OPENING STATEMENT OF SENATOR LAUTENBERG 

Senator LAUTENBERG. Thanks, Mr. Chairman. I note with respect your background and your interest and your view on things, 

but I do appreciate your calling this hearing and giving us an opVerDate 0ct 09 2002 13:39 Aug 01, 2006 Jkt 022197 PO 00000 Frm 00009 Fmt 6633 Sfmt 6633 C:\DOCS\22197.TXT SAFFAIRS PsN: PAT
4

portunity to examine the implementation of the Ryan White CARE 

Act. 

I was proud to be an original cosponsor of this legislation when 

it was first enacted by Congress in 1990. And as most know, it was 

named after Ryan White, a young Indiana person whose brave 

struggle against AIDS-related discrimination helped to educate our 

Nation. 

The good news is—and we heard it from Senator Coburn—is that 

in the years since this legislation was passed, we have seen dramatic breakthroughs and treatments, and today a diagnosis of 

AIDS is no longer a death sentence. The bad news is that it is still 

a very serious problem, and it continues to spread. 

More than 30,000 people in my home State of New Jersey are living with HIV or AIDS. The number increased 3.5 percent over a 

6-month period last year. Of those 30,000 New Jerseyians with 

HIV and AIDS, more than one-third are women. New Jersey ranks 

first in the percentage of women diagnosed with AIDS within the 

United States and third in the number of pediatric AIDS cases. 

I once visited a ward in Jersey City where pediatric AIDS victims were housed, and it was a tragic sight to witness. 

Today, Ryan White CARE reaches more than half a million 

Americans every year, and it is our Nation’s largest program specifically targeted to help people living with HIV disease. 

The CARE Act was amended and reauthorized in 1996 and once 

again in 2000. It is due for another reauthorization by September 

30 of this year. 

When the CARE Act was authorized by the Senate in 1990 no 

funds were appropriated in the original Labor HHS budget that 

year. I worked hard, along with Senator Byrd from West Virginia, 

to find funding for the original CARE Act. I also worked to ensure 

that smaller cities which had high per capita rates of AIDS were 

included in the Title I funding formula. By way of example, I 

worked to include Jersey City as one of the special targeted recipients of aid along with the Newark metropolitan area. Overall, New 

Jersey has six areas that are eligible to receive funds under Title 

I of the CARE Act. 

I hope this Subcommittee will support the reauthorization of this 

important program. I also urge my colleagues to oppose any effort 

to shift funding from areas with the high concentrations of HIV 

and AIDS cases. 

Mr. Chairman, I believe that while the costs have, I think, been 

effectively put to good use, I think that you have to have some kind 

of a structure to get things to the patients and the people who 

ought to be cautious about the fact that AIDS are transmittable 

and have a violent outcome. 

I thank you very much, and look forward to hearing from our 

witnesses. 

Senator COBURN. I am going to ask the witnesses to limit their 

testimony to 10 minutes, and I am also going to make a comment 

about availability of your testimony. This is directed toward the 

Administration and not the individuals sitting here, because I 

know the vetting process under which your testimony goes. 

Three hours before this Subcommittee hearing we received testimony. That is totally unacceptable for us to discuss a subject as seVerDate 0ct 09 2002 13:39 Aug 01, 2006 Jkt 022197 PO 00000 Frm 00010 Fmt 6633 Sfmt 6633 C:\DOCS\22197.TXT SAFFAIRS PsN: PAT
5

1The prepared statement of Dr. Janssen appears in the Appendix on page 32. 

rious as this, and the Administration proves itself incapable or incompetent to bring forth testimony on a hearing that they have 

been aware of for 2 weeks. So I would hope that you would take 

that message back so that in fact we can do the job. Without timely 

availability of testimony, which I understand neither Dr. Janssen 

or Dr. Hopson, is your fault, it is difficult. The fact is that timeliness and availability of testimony allows us to do a better job here, 

and ultimately fund this program better. 

I want to recognize Dr. Robert Janssen, Director of HIV/AIDS 

Prevention, National Center for Infectious Disease to go first, and 

Dr. Hopson, Associate Administrator for HIV Health Resources and 

Services Administration in Department of Health and Human 

Services to go second, and Dr. Michael Montgomery, Chief of Office 

of AIDS, Department of Health and Human Services, Sacramento, 

California, followed by Dr. Crosse, Director, Public Health and 

Military Health Care Issues. 

Dr. Janssen. 

TESTIMONY OF ROBERT S. JANSSEN, M.D.,1 DIRECTOR, DIVISIONS OF HIV/AIDS PREVENTION, NATIONAL CENTER FOR 

HIV, STD, AND TB PREVENTION, COORDINATING CENTER 

FOR INFECTIOUS DISEASES, CENTERS FOR DISEASE CONTROL AND PREVENTION, U.S. DEPARTMENT OF HEALTH AND 

HUMAN SERVICES 

Dr. JANSSEN. Thank you, Mr. Chairman. Thank you, Senator 

Lautenberg. Thank you for the opportunity to discuss trends in 

HIV and AIDS in the United States and the status of HIV surveillance systems. 

At the National HIV/AIDS Prevention Conference held in Atlanta 

last week, CDC announced that there are now an estimated 

1,039,000 to 1,185,000 Americans living with HIV or AIDS. This is 

an increase from the 850,000 to 950,000 reported 5 years ago. 

Due to more effective treatment, people are living longer and 

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

of persons capable of transmitting the virus, we estimate that the 

number of persons becoming newly infected last year has remained 

constant over the last 10 years, at approximately 40,000 new infections per year, as you can see in this figure. 

CDC’s analysis of trends in HIV diagnoses includes all new HIV 

diagnoses with or without an AIDS diagnosis in the 32 States that 

have conducted confidential name-based HIV/AIDS case reporting 

for at least 4 years. Between 2000 and 2003, 125,800 people were 

diagnosed with HIV infection in these 32 States. During 2000–

2003, the overall rate of HIV diagnoses, that is, the number of diagnoses per 100,000 people, remained stable. It was 19.5 in 2000, 

and 19.7 in 2003. However, sharp racial disparities continue to 

exist. Rates of HIV diagnoses among African-Americans are significantly higher than among other racial and ethnic groups. 

Looking at trends by risk, the annual diagnoses among men who 

have sex with men, or MSM, increased 11 percent during this 4-

year period. MSM accounted for 44 percent of HIV cases in this 

time period. 

6

The annual number of diagnoses associated with high-risk heterosexual contact remained roughly stable from 2000 to 2003, while 

new diagnoses associated with injection drug use declined slightly. 

In 2003, the highest rate of HIV diagnosis was among AfricanAmerican males, 103 per 100,000 population. That is a rate that 

is nearly three times the rate among Hispanic males and seven 

times the rate among white males. The rate of HIV diagnoses 

among African-American females in 2003 was 53 cases per 100,000. 

That is almost five times higher than among Hispanic females, and 

more than 18 times higher than among white females. Among 

American Indians/Alaska Natives, the rate of HIV diagnosis among 

males was slightly higher than the rate of white males, and the 

rate among females was twice that among white females. The lowest rates by gender are among Asian/Pacific Islander males and females. 

AIDS cases and deaths reported from all U.S. States and territories continue to provide a valuable measure of the impact of the 

disease. Data on the number of new AIDS cases provide us with 

measures of late-state disease, but are not reflective of the entire 

HIV epidemic. HIV progresses to AIDS in an untreated person in 

approximately 8 to 10 years, and even longer for persons receiving 

treatment. The number of persons diagnosed with and dying of 

AIDS after the introduction of highly active antiretroviral therapy 

dropped dramatically until 1998, and since then has remained relatively constant. 

African-Americans continue to be most severely affected by 

AIDS. In 2003, rates of AIDS cases were highest among AfricanAmericans, next highest among Hispanics, then American Indian/

Alaska Natives, then whites, and lowest among Asian/Pacific Islanders. 

From the end of 1999 through the end of 2003, the number of 

persons in the United States living with AIDS increased 30 percent, from a little over 311,000 to nearly 406,000. 

CDC is responsible for ensuring the integrity of the national 

HIV/AIDS surveillance system to accurately monitor the epidemic 

in the United States. CDC also provides funding and technical assistance and coordinates activities with States to aggregate data 

that comprises this national system. As with other diseases, individual State governments have statutory and regulatory authority 

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

as to what methods will be used for disease reporting, such as 

name-based or code-based. Except for HIV, all other reported infectious diseases, including AIDS, are routinely reported to States 

using name-based reporting systems. States then remove names 

before submitting the data to CDC. 

Since the beginning of the epidemic, AIDS surveillance has been 

the cornerstone of national, State, and local efforts to monitor the 

scope and impact of the HIV epidemic. AIDS surveillance data, 

however, no longer accurately describe the full extent of the epidemic, as effective therapies slow the progression of HIV disease. 

To more accurately describe the epidemic, in 1999 CDC recommended that all States implement reporting of HIV diagnoses 

and advised that cases be reported to local and State health departments by name. 

7

To reach the goal of nationwide high-quality HIV data, as of 

today, CDC is now moving from advising to recommending jurisdictions use name-based HIV reporting, using the same name-based 

approach currently used for AIDS surveillance nationwide. Currently, 38 States and five territories have adopted name-based HIV 

reporting, seven States, the City of Philadelphia, and the District 

of Columbia have code-based reporting, in which a code is reported 

to the health department. Five States have name-to-code reporting, 

in which a name is reported to the health department and the 

health department creates a code. 

There are 14 areas that use codes, and in those areas 13 different codes are used. Because all States do not use a uniform 

name-based approach to HIV reporting, there are limitations to the 

current national HIV reporting database. These limitations include 

national data on HIV diagnoses are not representative of some high 

morbidity areas, for example, California, whose data are not included. 

Despite a growing number of States with quality systems, the 

staggered implementation of HIV reporting means HIV data at the 

national level are currently less accurate than AIDS data at the 

national level. 

In 1999, CDC published a set of performance standards for HIV 

reporting systems. CDC reports HIV infection data only from areas 

conducting confidential name-based reporting because this reporting has been shown to routinely achieve high levels of accuracy and 

reliability. Confidential name-based surveillance systems have been 

shown to best meet the necessary performance standards. Studies 

have also shown that implementing code-based and name-to-code 

systems are more expensive to implement than confidential namebased systems. Currently, only confidential name-based HIV reporting integrated with AIDS surveillance data can be used by 

States to identify and remove cases that are counted in more than 

one State—a process we call de-duplication—before they can be incorporated into CDC’s national surveillance database. 

The last Ryan White CARE Act reauthorization called for an Institute of Medicine study of States’ HIV surveillance systems and 

their adequacy and reliability for the purpose of using such data 

as the basis for CARE Act formula grant allocation. The reauthorization also called for the Secretary of the Department of Health 

and Human Services to make a determination regarding use of 

HIV data for CARE Act formulas. 

The Institute of Medicine issued a report, ‘‘Measuring What Matters,’’ on allocation, planning and quality assessment for the CARE 

Act. Based on the report findings in June 2004, the Secretary determined that HIV data not be used for purposes of making formula grants under Titles I and II of the Ryan White CARE Act and 

that estimated living AIDS cases continue to be utilized until such 

time as high-quality HIV data are available nationwide. 

We continue to work closely with the States to help them adopt 

and implement high-quality HIV surveillance systems. Having all 

States collect HIV information in the same manner will ensure the 

Nation has reliable and valid data to monitor and describe the 

scope of the epidemic, to assure equitable distribution of resources 

to those with greatest need, and to plan for and evaluate prevenVerDate 0ct 09 2002 13:39 Aug 01, 2006 Jkt 022197 PO 00000 Frm 00013 Fmt 6633 Sfmt 6633 C:\DOCS\22197.TXT SAFFAIRS PsN: PAT
8

1The prepared statement of Ms. Hopson appears in the Appendix on page 43. 

tion, care and treatment programs. A uniform system is needed for 

measuring HIV incidence. It is also needed for evaluating HIV and 

AIDS care in the United States. 

We have recently launched the Morbidity Monitoring Project, 

that is a study which, when fully, funded will allow nationwide estimates of the quality of HIV and AIDS care, also reasons why people are not receiving care and information on sexual and drug use 

risk behavior. 

Again, I want to thank you, Mr. Chairman, and the Committee, 

for this opportunity to talk about HIV and AIDS trends in the 

United States and HIV surveillance systems. 

Thank you. 

Senator COBURN. Dr. Hopson. 

TESTIMONY OF DEBORAH PARHAM HOPSON, Ph.D.,1 ASSOCIATE ADMINISTRATOR, HIV/AIDS BUREAU, HEALTH RESOURCES AND SERVICES ADMINISTRATION, U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES 

Ms. HOPSON. Good afternoon. Mr. Chairman, Members of the 

Subcommittee, thank you for the opportunity to meet with you 

today on behalf of the Health Resources and Services Administration to discuss the programs of the Ryan White Comprehensive 

AIDS Resources Emergency Act, also known as the CARE Act. 

We certainly appreciate, Dr. Coburn, your continuing support 

that you and your colleagues have for the CARE Act programs. 

Your interest in the CARE Act services is certainly welcome, given 

the state of today’s epidemic as just described by the CDC. 

The Ryan White CARE Act is the centerpiece of our domestic response to care and treatment needs of low-income people living 

with HIV and AIDS. Currently funded at $2.1 billion, it provides 

primary health care, life saving medications and support services 

to individuals who lack health insurance and financial resources to 

provide for themselves. On two occasions, including his most recent 

State of the Union Address, President Bush has addressed the importance of this program and has called for the timely reauthorization of the Ryan White CARE Act. 

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, 

the Virgin Islands and Pacific Basin. Fifty percent of these individuals live below the Federal poverty level, less than 10 percent had 

any private health insurance, and less than 30 percent were enrolled in Medicaid. In 2003 over half of the Ryan White clients 

were African-American. The Ryan White CARE Act programs have 

provided important benefits to these populations. Overall, AIDS 

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

medications purchased through the AIDS Drug Assistance Program, also known as ADAP. Pregnant women have been provided 

with care that has allowed them to give birth to children free from 

HIV infection, and thousands have received support services that 

have allowed them to access and remain in health care. 

9

Although we are making progress in providing services to people 

living with HIV and AIDS, the epidemic is not over and will be in 

need of our continuing attention for some time to come. The President and the 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. 

During the past 5 years we have recognized that as essential as 

the CARE Act has been to serve Americans living with HIV and 

AIDS, it is an imperfect instrument in need of revitalization. Despite record levels of funding, we continue to face waiting lists for 

life saving drugs through the ADAP, and there are marked disparities in access to quality medical treatment across the country. As 

minority populations are increasingly and disproportionately impacted by HIV/AIDS, changes to existing systems of care designed 

for an earlier epidemic are increasingly urgent. We are challenged 

as never before to make sure that Federal funds are directed where 

they are most needed and used for the most vital purposes. 

President Bush has laid out three principles for the reauthorization of the CARE Act: First, that we should focus Federal resources 

on life-extending medical care such as antiretroviral drugs, doctor 

visits, and lab tests, core services that are critical to maintain the 

health and well-being of people living with HIV and AIDS; second, 

that we provide greater flexibility so that CARE Act resources can 

be targeted to areas of greatest need; and third, that we ensure accountability in all that we do. 

Based on the new CDC data, it is estimated, as Dr. Janssen has 

just said, that there are between 1 million and 1.2 million people 

living with HIV disease in the United States. Approximately 40,000 

new HIV infections and over 18,000 AIDS related deaths occur per 

year. Of those living with HIV disease, 74 percent are male, 47 percent are African-Americans, while 34 percent are white and 17 percent are Hispanic. 

In addition to challenges related to poverty and lack of adequate 

health insurance, individuals living with HIV disease commonly 

face other problems. About 22 percent of those with HIV/AIDS 

were infected through injection drug use. An estimated 20 to 50 

percent of people living with HIV/AIDS suffer from mental illness, 

both related and unrelated to their infection, and co-infection with 

hepatitis B and C is an increasing problem. 

As I stated earlier, each year the CARE Act programs, primarily 

through grants to States, metropolitan areas, providers and educators, reach more than half a million underserved persons, more 

than half of those living with HIV/AIDS in the United States. Since 

AIDS was first recognized the pattern and treatment of HIV disease has shifted. Now we can strive to manage HIV/AIDS as a 

chronic disease. 

More than 2,700 providers funded by the CARE Act programs 

are providing primary care and treatment, and are building networks with other public and private providers to respond the response to the epidemic. Innovative outreach programs and community based points of entry, such as public health, faith-based, social 

service and substance abuse treatment organizations help to extend CARE Act services to hard-to-reach and at-risk populations. 

10

Since the initiation of the CARE Act programs in 1990, perinatal 

transmission of HIV has declined dramatically. Less than 2 percent 

of all CARE Act HIV positive clients are children under 12 or 

younger, due in large part to the advances in prevention of 

perinatal transmission. The CDC reports that in 25 States with 

long-standing confidential name-based HIV reporting, cases of HIV/

AIDS and infants born to HIV-infected mothers declined 74 percent 

over the 10-year period from 1994 until 2003. 

Access to antiretroviral therapy for the CARE Act population has 

been expanded through the cost saving mechanisms being used by 

individual State ADAPs and other discount programs. Antiretroviral therapy has led to longer, healthier lives for individuals living 

with HIV and AIDS. As a result, almost one-third of the CARE Act 

population is age 45 or older. 

ADAP, which provides funds to States to purchase life saving 

medications, is the single largest CARE Act program because of the 

high cost of medication and the growing number of people living 

with HIV and AIDS. In fiscal year 2005, HRSA distributed $787.5 

million in ADAP funds to States, and the fiscal year 2006 President’s Budget request includes a $10 million increase for ADAP. 

The ADAP program reaches approximately 90,000 people every 

month. This program is State-defined and thus differs in eligibility 

criteria and formularies from State to State. 

The epidemiology and treatment of HIV has shifted in recent 

years to a more chronic disease model requiring a changing continuum of services to support this model. This shift and the success 

of new treatment has resulted in longer life spans and an overall 

increase in the demand for care and related treatments. 

Going forward, the greatest challenge is reaching people who 

have nowhere else to turn, especially as HIV/AIDS prevalence, 

health care costs and the burden of HIV among uninsured and 

underinsured increases. Resources are likely to become more and 

more strained as the CARE Act’s outreach efforts, coupled with 

CDC’s prevention initiatives continue to successfully identify individuals living with HIV disease. 

These newly infected individuals are more likely to be low income, to be minority and to have complex co-morbidities, as I mentioned before. Many will live in rural areas. Strengthening health 

care and community organizations capable of serving these populations will be an increasingly important role in the CARE Act’s 

next decade. 

Mechanisms to allocate funds must be cognizant of these 

changes: ‘‘hold-harmless’’ provisions, formulas based on AIDS rather than HIV, and allowing funds that have not been put to work 

in a timely manner to roll over or revert to the Treasury rather 

than giving DHHS the necessary flexibility and authority to reprogram resources to communities in need, must be re-engineered. 

We take great pride in the advances in care and support for people living with HIV/AIDS that have been made by the CARE Act 

program over these last 15 years. We are thankful to you for your 

help and that of the dedicated providers and communities all over 

the country. However, we are humbled by the significant challenges that remain to reach people living with HIV/AIDS who have 

nowhere else to go for care in an age of increasing HIV/AIDS prevVerDate 0ct 09 2002 13:39 Aug 01, 2006 Jkt 022197 PO 00000 Frm 00016 Fmt 6633 Sfmt 6633 C:\DOCS\22197.TXT SAFFAIRS PsN: PAT
11

1The prepared statement of Mr. Montgomery appears in the Appendix on page 49. 

alence, increasing health care costs, and a growing burden of HIV 

among the uninsured and underinsured. 

We will soon be releasing an expanded set of policy points based 

upon the President’s principles. We intend these to serve as guideposts for discussion and deliberation on the very tough issues we 

must face together: how we ensure that the most vulnerable and 

needy in this country receive life saving treatment, how to work 

more effectively with State and local governments and communities 

impacted by HIV, how to hold ourselves and our partners more accountable for the use of Federal tax dollars, and importantly, how 

to advance HIV prevention in this Nation. 

We look forward to working with you to revitalize the CARE Act. 

Thank you. 

Senator COBURN. Thank you, Dr. Hopson. Mr. Montgomery. 

TESTIMONY OF MICHAEL MONTGOMERY,1 CHIEF, OFFICE OF 

AIDS, CALIFORNIA DEPARTMENT OF HEALTH SERVICES, 

AND CHAIR, NATIONAL ALLIANCE OF STATE AND TERRITORIAL AIDS DIRECTORS 

Mr. MONTGOMERY. Good afternoon, Mr. Chairman and distinguished Members of the Subcommittee. My name is Michael Montgomery, Chief of the Office of AIDS for the California Department 

of Health Services. I am also the Chair of the National Alliance of 

State and Territorial AIDS Directors, or NASTAD. I want to thank 

you for inviting me to speak with you today to discuss the importance of the Ryan White CARE Act in helping States provide comprehensive care and treatment services to persons living with HIV 

and AIDS. 

State AIDS Directors appreciate the long-standing support of the 

U.S. Senate for the Ryan White CARE Act programs. Assuring that 

all people with HIV and AIDS, regardless of geographic location, 

have equal access to appropriate and high quality HIV and AIDS 

services is our highest priority. 

I would like to share with you some of the views of my fellow 

State AIDS Directors in addition to those in the State of California. 

I have limited my comments to those that address disparities in 

the CARE Act or are issues covered in the ongoing GAO investigation. 

California’s Office of AIDS administers California’s HIV/AIDS 

prevention and care programs which are funded by Federal and 

State funds, including CARE Act Title II funds. HIV infections 

have penetrated nearly every metropolitan and rural community in 

our State. California remains an epicenter of the AIDS epidemic 

with 137,213 cumulative cases, and 57,308 individuals living with 

AIDS as of May 31, 2005. Today California has 37,531 reported 

HIV, non-AIDS cases. 

In Federal fiscal year 2005, California received $221 million in 

Ryan White funding for Titles I and II, including $31 million for 

the Title II base, $90 million for ADAP, and $169,000 for our single 

emerging community, Bakersfield. California has nine Title I eligible metropolitan areas that are funded at $99 million. Governor 

Schwarzenegger and the California legislature have demonstrated 

12

their commitment to HIV/AIDS care and treatment by providing 

$111 million in the State General Fund in spite of California’s continuing budget deficit. 

For people with HIV the CARE Act is the safety net under other 

public programs such as Medicaid and Medicare. The Ryan White 

programs must adapt to fill the gaps particular to each State. 

ADAPs work closely with their State Medicaid programs to ensure 

that ADAPs remain the payer of last resort. In particular, State 

ADAPs will be working to fill gaps in coverage for those enrolled 

in the new Medicare prescription drug plans, and those who have 

incomes over 150 percent of the Federal poverty level. As the payer 

mixes and cost of delivery of care vary across the country, it makes 

the exercise of comparing CARE Act programs from one State to 

another exceedingly challenging. 

Annually ADAPs serve approximately 136,000 clients or about 30 

percent of the people with HIV and AIDS estimated to be receiving 

care nationally. 

In conjunction with my colleagues from New York, I helped establish NASTAD’s ADAP Crisis Task Force to negotiate with the 

pharmaceutical industry on behalf of all ADAPs. Although the larger States have the bargaining power, we feel it is critical that all 

ADAPs, large and small, have access to the same prices and discounts. The task force began negotiations in March 2003 with eight 

manufacturers of AIDS drugs. As a result of this highly successful 

public/private partnership, we received supplemental discounts, rebates and price freezes that achieved an estimated $90 million in 

savings during fiscal year 2004. ADAPs receive the lowest available 

prices in the country for antiretroviral therapies. 

Understanding that there are disparities between States and 

what they are able to offer in terms of the level of services, State 

AIDS Directors recommend keeping the Title II base formula as is. 

Equity among the States cannot be achieved simply by rearranging 

the $334 million in the Title II base, and the problem in geographic 

disparities cannot be solved on the back of Title II alone. The entire CARE Act must have responsibility to achieve equity for persons living with HIV and AIDS. 

When looking at per AIDS case funding disparities from State to 

State, one needs to take into consideration Title III, Title IV and 

part F in addition to Title I and II. In the reauthorization of the 

CARE Act in 2000 language was included which directed HRSA to 

prioritize Title III funding and non-Title I areas. This has been notably successful in moving toward geographic equity in funding, 

and any analysis of per AIDS expenditures while looking at Titles 

I and II alone distorts the equation. 

Disparities in the availability of resources affect the accessibility 

and equality of HIV services both within and between States. State 

AIDS Directors recognize that the multi-Title structure of the Ryan 

White CARE Act contributes to the challenges faced by some States 

in effectively addressing the needs of persons living with HIV and 

AIDS. In many States the current structure is a contributing factor 

to funding disparities that affects availability, accessibility and 

quality of services both within and between States, as well as the 

coordination of HIV care and efficient delivery of essential services. 

13

While the Ryan White CARE Act cannot be viewed as the sole 

mechanism for equalizing these inherent differences, the current 

structure of the CARE Act leaves many States struggling with the 

delivery and coordination of HIV services while trying to meet the 

legislative mandates to provide for the public health of its citizens. 

In recommending retaining the current structure of the CARE 

Act, State AIDS Directors do so while establishing the following 

two goals which are reflective of our vision for improved HIV care 

services in the Nation. 

1. To enhance the availability of ADAP resources and services for 

persons living with HIV and AIDS in need in all areas of the Nation; and 

2. To provide additional resources to States with chronically insufficient Title II base funds by strengthening the emerging communities’ mechanism. 

Time does not permit for me to describe the details of these proposals which are outlined in my submitted testimony, and 

NASTAD’s recommendations to guide the 2005 Reauthorization of 

the Ryan White CARE Act. 

State AIDS Directors believe the current Emerging Communities 

provision should be modified to address the needs of States with a 

severe lack of Title II base resources that fund critical primary care 

and support services. Authorized in 2000 the Title II Emerging 

Communities Supplemental Grant sought to address the challenges 

faced by areas with a significant burden of AIDS cases, but that 

lack the density of cases to be a Title I EMA. 

Since its creation, emerging communities have been subject to 

significant funding fluctuations due in large part to emerging communities not permanently being eligible once they begin receiving 

funds. The number of areas eligible for these supplemental grants 

has continued to diminish over the 5-year reauthorization period 

because of reductions in the number of AIDS cases. In the past 4 

years, 14 emerging communities have been eliminated altogether. 

We strongly support incorporation of HIV data in CARE Act distribution formulas. We believe the use of HIV cases in addition to 

AIDS cases in CARE Act allocation formulas is preferable and 

more closely reflects the epidemic than living AIDS cases. 

Forty-three jurisdictions have name-based HIV reporting, with 

the remaining 13 jurisdictions utilizing a name or a name-to-code 

system for reporting HIV cases. Several jurisdictions have only recently implemented HIV reporting, both code and name-based, and 

therefore their HIV data is not yet considered mature enough to 

use in funding formulas. 

To incorporate HIV data in fiscal year 2007, CDC will need to 

develop a methodology to estimate HIV cases for these States. 

State AIDS Directors urge that the CDC be required to work with 

the States when developing this methodology. 

California is the only State among the five largest that uses an 

HIV reporting system different than its AIDS reporting system. 

The Schwarzenegger administration is concerned that by not converting to a names-based HIV reporting system, California risks 

losing its fair share of CARE Act funds when the funding formula 

changes. While legislative attempts were unsuccessful this year to 

14

change from a code to name-based reporting, a spirited dialogue in 

California continues. 

Having said that, State AIDS Directors unanimously agree that 

our Federal funds should not be withheld in order to force States 

to switch reporting systems. We believe surveillance is within the 

domain of the States. The States should determine what methodology best serves the needs of their citizens. 

State AIDS Directors unanimously agree that expiring unexpended funds must be put back into the CARE Act rather than return to the Treasury as is currently the case. Our ADAP proposal 

would redistribute unobligated and expiring funds from all titles 

back into the ADAP program. Unspent funds typically result from 

delays in notice of grant awards from the Federal Government, 

from timing issues related to subcontracting of services, payroll 

savings due to State hiring delays or freezes, expenditure of other 

grant funds for similar services, or unanticipated fluctuations in 

spending at the State level. California currently has $5,319 in carryover. 

States with excessive and chronic amounts of unobligated funds 

need immediate technical assistance from HRSA to address issues 

that are hindering a State from spending their award. We support 

providing HRSA the authority to move unobligated funds from 

States with an identified need lower than the Federal funds appropriated to States with chronic shortages. 

State AIDS Directors support the continuation of a hold-harmless 

provisions for the Title II base at a reduced rate of loss. From California’s perspective the hold-harmless provisions is necessary to 

protect California from under-funding resulting from the estimated 

living AIDS case formula, which underestimates California’s actual 

living AIDS cases by 30 percent, a $20 million loss to the State in 

current year’s Title II funding. 

Experience shows that after the last reauthorization due to the 

unintended consequences of changes in the law, 30 States were 

held harmless from significant funding losses. With limited funding, as well as three consecutive years of cuts to the Title II base, 

these disparities cannot be corrected via major shifts in Title II resources without impacting critical existing services in jurisdictions 

that would lose funding. 

However, we support the removal of the second hold-harmless 

provision to the overall Title II award that has resulted in the unintended effect of reducing the amount of money available for the 

ADAP supplemental allocation due to significant fluctuations in the 

emerging communities funding. 

I hope my remarks have illustrated the critical importance of the 

Ryan White CARE Act to California and the complexities of addressing disparities, and that you will consider the recommendations I have outlined. 

Thank you for the opportunity to speak to you today. I look forward to answering any questions you may have. 

Senator COBURN. Thank you, Mr. Montgomery. Dr. Crosse. 

15

1The prepared statement of Ms. Crosse appears in the Appendix on page 59. 

TESTIMONY OF MARCIA G. CROSSE, Ph.D.,1 DIRECTOR, 

HEALTH CARE, U.S. GOVERNMENT ACCOUNTABILITY OFFICE 

Ms. CROSSE. Mr. Chairman and Members of the Subcommittee, 

I am pleased to be here today to discuss the Ryan White CARE 

Act. As we have heard, the CARE Act makes funds available to 

States and localities to provide health care, medications and support services to individuals and families affected by HIV and AIDS. In fiscal year 2004 over $2 billion in funding was provided 

through the CARE Act, the majority of which was distributed 

through Title I grants to eligible metropolitan areas, or EMAs, and 

Title II grants to States, the District of Columbia, and territories. 

Metropolitan areas qualify as EMAs if they have a total of 2,000 

reported AIDS cases in the previous 5 years. Titles I and II use formulas to distribute grants according to a jurisdiction’s reported 

counts as AIDS cases. 

The Care Act reauthorizations in 1996 and 2000 modified the 

original funding formulas. Prior to 1996 the CARE Act measured 

a jurisdiction’s caseload by its cumulative count of AIDS cases, 

which is the number of AIDS cases, both living and deceased, recorded since reporting began in 1981. The 1996 reauthorization 

changed the measurement to an estimation of the number of living 

AIDS cases. This switch would have resulted in shifts of funding 

away from jurisdictions with a longer history of the disease and a 

higher proportion of deceased cases. 

To ease these funding shifts, the CARE Act includes hold-harmless provisions under Title I and Title II that protect grantees from 

decreases in funding from one year to the next. Title I of the CARE 

Act also includes a grandfather clause for EMAs that guarantees 

once a metropolitan area has become an EMA, it will continue to 

receive funding under Title I even if its caseload drops below the 

threshold for eligibility. 

The most recent reauthorization of the CARE Act in 2000 maintained these modifications, and it further specified that HIV cases 

should be used in funding formulas no later than 2007, as we have 

heard. HIV case counts have not been used to date to distribute 

funding under the CARE Act. 

To assist the Subcommittee in its consideration of the CARE Act, 

my testimony provides our preliminary findings on some of the 

issues we are reviewing for the Chairman and other requesters. My 

remarks today will focus on selected provisions of the CARE Act. 

Specifically I will discuss: The impact of CARE Act provisions on 

the distribution of funds that is based upon the number of AIDS 

cases in metropolitan areas; the impact of the CARE Act’s holdharmless provisions and a grandfather clause on the distribution of 

funds; and the potential shifts in funding among grantees if HIV 

case counts had been incorporated in fiscal year 2004 funding formulas. 

Our analysis shows that certain CARE Act Title I and Title II 

provisions related to the distribution of funds to metropolitan areas 

result in variability between the amounts of funding per case 

among grantees. As you will see in the figure, States that have 

EMAs within their borders receive more funding for estimated livVerDate 0ct 09 2002 13:39 Aug 01, 2006 Jkt 022197 PO 00000 Frm 00021 Fmt 6633 Sfmt 6633 C:\DOCS\22197.TXT SAFFAIRS PsN: PAT
16

ing AIDS cases than those without EMAs because cases within 

EMAs are counted twice, once to determine Title I funding to 

EMAs and once again to determine a State’s Title II grant. For example, States with no AIDS cases in EMAs receive about $3,600 

per AIDS case. States with 75 percent or more of their cases in 

EMAs received about $5,000 per AIDS case, or as the Chairman 

noted, 38 percent more funding than States with no EMA. 

If the total Title I and Title II funding had been distributed 

equally per AIDS case among all grantees, each State would have 

received about $4,800 per AIDS case. 

Metropolitan areas that have been affected by the epidemic, but 

do not have the necessary numbers of AIDS cases to become EMAs, 

may qualify for funding as emerging communities under Title II. 

As the figure shows, the allocation of these grants is made by separating eligible jurisdictions into two tiers based on their reported 

numbers of AIDS cases. Because one-half of the total emerging 

communities grant award is allocated to each tier regardless of how 

many cases are in each tier, in fiscal year 2004, jurisdictions in one 

tier with a total of 15,994 cases received $313 per case, while jurisdictions in the other tier with a total of 4,754 cases received $1,052 

per case. 

The hold-harmless provisions under Titles I and II, and the 

grandfather clause for EMAs under Title I sustain the funding and 

eligibility of CARE Act grantees by guaranteeing either a certain 

percentage of previous years’ funding amounts or an EMA’s eligibility to receive funding. These provisions make it more difficult for 

CARE Act funding to track the most current distribution of the epidemic. 

As this figure shows, Title I’s hold-harmless provisions for EMAs 

has primarily benefited the San Francisco EMA, which received 

over 90 percent of the fiscal year 2004 Title I hold-harmless funding. San Francisco is the only EMA that has deceased cases 

factored into its allocation because it is the only EMA with holdharmless funding that dates back to the mid 1990s when funding 

was based on the cumulative count of AIDS cases, living and dead. 

In essence, deceased cases are still being used to determine funding 

for San Francisco, with the result that the city’s funding is equivalent to what an EMA with 84 percent more living cases would have 

received. 

As you can see in the next figure, the grandfather clause in Title 

I maintained the funding for 29 or the 51 EMAs that became eligible for Title I base grants in the past. These EMAs, however, would 

not have qualified for Title I base grants in fiscal year 2004 based 

upon their case counts which were below the eligibility threshold 

of 2,000 reported AIDS cases in the last 5 calendar years. Four of 

these EMAs had fewer reported cases than any of the cities receiving emerging communities funding. 

All States have established HIV case reporting systems, and the 

2000 reauthorization of the CARE Act required that HIV cases be 

used in determining formula funding no later than fiscal year 2007. 

However, CDC, as we have heard, currently only accepts namebased case counts, the States shown in our figure in blue. Therefore, State reported HIV cases that used codes rather than names 

17

would not be counted in allocating CARE Act funds if HIV case 

counts were used in funding formulas. 

As shown in the figure in orange, 12 States, the District of Columbia and Philadelphia, Pennsylvania have some form of a codebased system rather than a name-based system. CDC does not accept the code-based data principally because methods have not 

been developed to make certain that a code-reported HIV case does 

not represent an individual already counted in another jurisdiction. 

While we are aware of some of the limitations of HIV data, as 

an example of what might occur, we used two approaches to examine the potential impact of using HIV cases in addition to AIDS 

cases on fiscal year 2004 Title II base grant distributions. 

The first approach reflects the data that would be used if funding 

allocations were based on the HIV and AIDS case counts currently 

received by CDC. 

Under the second approach we used the same HIV and AIDS 

case counts as our first approach for the jurisdictions where CDC 

accepts HIV data, but supplemented these data with the HIV case 

counts collected by the other States and the District of Columbia 

from which CDC did not accept HIV data. 

AS shown in this figure, for each approach we estimated the impact if funding was distributed equally per case, both without holdharmless or minimum grant provisions, shown on the two figures 

on the left, and with such provisions, shown on the right. 

Our analyses indicate that under either approach to including 

HIV cases, at most 14 percent of CARE Act Title II base funding 

would have shifted, with southern States being the primary beneficiaries. Some States, however, could have seen large increases or 

decreases. Changes in funding would be largely offset, at least initially, if the funding formulas included hold-harmless and minimum grant provisions. 

In conclusion, the services provided under the CARE Act have 

filled important gaps in communities throughout the country, but 

as Congress reviews this Act, we believe it is important to understand how variable this funding can be. Today I have highlighted 

a few of the issues that are relevant to this review. For each or 

these issues, we found that the provisions of the CARE Act have 

impacted the extent to which funds have been distributed in proportion to the incidence of HIV and AIDS. It is clear that the level 

of funding available per case is quite variable, depending upon 

where an individual lives. 

The way cases from EMAs are counted twice, the tiered allocation of funds to emerging communities, the hold-harmless provisions and the grandfathering of EMAs have all resulted in considerably more funding going to some communities than others with 

equivalent numbers of cases. 

The inclusion of HIV cases in the funding formulas would also 

result in variable funding depending in part upon the type of reporting system used in each State. 

Mr. Chairman, this completes my prepared statement. I would be 

happy to respond to any questions you or other members of the 

Subcommittee may have at this time. 

Senator COBURN. Thank you, Dr. Crosse. 

18

I am going to recognize my Ranking Member and good friend for 

an opening statement, and then we will take up the questioning. 

OPENING STATEMENT OF SENATOR CARPER 

Senator CARPER. I appreciate the opportunity first of all to welcome our witnesses. I apologize for being delayed and missing at 

least the very beginning of some of the opening statements, and 

pleased that I had a chance to hear from each of you. 

I think Senator Coburn as a physician has probably forgotten 

more about these issues than I know, so I come to this hearing 

really as an opportunity to learn. I understand that the Ryan 

White CARE Act was first enacted, in 1990. And Senator Lautenberg was there as a page. [Laughter.] 

Senator CARPER. And he is still with us. 

It is named after a very courageous teenager who struggled not 

only with AIDS but also against discrimination as we all recall, so 

there is fear and prejudice as well. 

These days I think we have made a whole lot of progress. We 

have lived to see it both in terms of combating this stigma and in 

combating the disease itself. I think we will all agree that we have 

a good long ways to go. The CARE Act, nonetheless, has been one 

of the chief Federal programs in this 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 services. 

The Ryan White program serves an estimated, I am told, 533,000 

people each year, and it provides not only vital prescription drugs, 

but needed support services to help patients stay on those drugs 

and to adhere to a complex drug regimen. 

My own State of Delaware has done, we believe, a good job of 

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

have made quality health care a priority, and are fortunate to be 

able to offer a generous Medicaid program, a very generous AIDS 

drug program and a high-quality Ryan White services. 

Our witnesses that we have heard from here today have been 

discussing a number of different issues, largely focusing on the 

funding of Ryan White. Since I believe this is a jurisdiction of this 

Subcommittee, and several of these issues that deal with variations 

in the level of funding and care around our country, we have been 

hearing, and we are going to hear some more about some of the 

States getting more funding than others, about some States having 

ADAP waiting lists while others are unable to serve everyone and 

so forth. I think it is imperative that we ensure that any living person with HIV or AIDS receives a high standard of care no matter 

where he or she lives, whether it is New Jersey or Delaware or 

Oklahoma. 

However, I think it is important that we keep in mind several 

issues when considering the data that we are hearing today. Let 

me mention a couple of those. First, the Ryan White CARE Act on 

the whole is working. We have lengthened the time from HIV infection to the onset of AIDS. People are living longer and they are living healthier. We can always strengthen the program but I think 

we have done a fair job so far. 

19

1The letter to Mr. Walker appears in the Appendix on page 106. 

Second, as we consider whether we are appropriately distributing 

funding, I think we should ensure that we are looking at the whole 

picture. GAO has presented some various data today on the per 

case funding around the country and on ADAP waiting lists. However, we should consider a few issues, namely, whether per case 

funding is the best way to examine Ryan White funding distribution, and whether we can look at Ryan White funding in a vacuum. 

In every single State the burden placed on Ryan White depends on 

what percentage of the HIV/AIDS population is enrolled in Medicaid and how generous that State’s Medicaid is. It depends on 

what percent of people with HIV/AIDS are enrolled in Medicare 

and what percent have private insurance. 

So the needs of different areas of the country, both in terms of 

funding and needed services, are going to vary. I think it is important that we consider this whole picture finally. 

If we determine that there are inequities, then we ought to seek 

to address them, but we should keep in mind that many of our cities, where over 70 percent of people with HIV/AIDS still do reside, 

have built up successful public health infrastructures to combat 

this disease, and we want to be careful not to jeopardize or dismantle those. 

I hope the issues that are brought up here today can inform not 

only me, but the upcoming debate on reauthorization. Ryan White 

has always been a bipartisan issue, and I hope that this Congress 

in this year will continue that tradition, and we can work together 

with our friends in the House of Representatives to produce a bipartisan reauthorization package. 

Again to our witness, thanks for coming. 

And, Mr. Chairman, thanks for letting me give this belated opening statement. 

Senator COBURN. Thank you, Senator Carper. 

We have a vote on, and I think I will recess the Subcommittee 

so that we can go vote and come back. It will take us about 10 minutes, hopefully. 

The Subcommittee stand in recess. 

Senator LAUTENBERG. Mr. Chairman, may I ask before we go to 

adjournment, to be able to submit some questions to the witnesses 

in writing? 

Senator COBURN. Absolutely. 

Senator LAUTENBERG. And to include a letter written by myself 

and several other Senators from California and New York to Mr. 

Walker, who is the Comptroller General of the United States, regarding GAO studies?1

Senator COBURN. Without objection. 

Senator LAUTENBERG. Thank you. 

Senator COBURN. And we will stand in recess until we get back 

from the vote. 

[Recess.] 

Senator COBURN. The Subcommittee will come back to order. 

I am going to start with some questions, and I think Senator 

Carper will be returning. We did put into the record questions that 

Senator Lautenberg wanted to have asked. 

20

Dr. Janssen, in your testimony you said CDC is moving from advising to recommending jurisdictions use name-based reporting. 

What is the practical impact of that change in terminology? Will 

CDC withhold financial resources, for example, if a jurisdiction 

does not follow CDC’s recommendations? 

Dr. JANSSEN. First, we have heard from a number of jurisdictions 

about CDC recommendations, jurisdictions that would like to move 

from code-based to name-based systems, and they felt that a 

stronger recommendation from CDC would help them be able to 

move through their State legislatures and through their regulatory 

processes to change their systems. 

Senator COBURN. So that might mean if they heard from Congress about that, too, might be beneficial? 

Dr. JANSSEN. I can only speak from a CDC perspective about 

that, but at least that is what we have been told by health departments. So it is a stronger recommendation than we had made in 

1999. The reason for it is really several-fold. As many people have 

mentioned already, we do not currently include code-based data. 

The reason is that we have not completely even developed methods 

for evaluating code-based data within a State or even between 

States. We have completed, and just completed at the end of last 

year, a pilot evaluation of several code-based systems that gave us 

mixed results. Based on that, we are attempting to develop a full 

evaluation system of those code-based systems. 

Senator COBURN. Tell me what mixed results means? 

Dr. JANSSEN. Some States found that they were having trouble 

meeting the standards we published in 1999, and at least in one 

case in the pilot they did meet the standards, in addition which we 

think that—CDC works with the Council of State and Territorial 

Epidemiologists who develop lists of reportable diseases, and we 

felt that HIV should be, like other infectious diseases, reported by 

name and reported voluntarily by the States. 

We do not intend to withhold funds from States that continue to 

collect data by codes. Even though we do note that in many cases 

this seems to be a cumbersome process, it also is more expensive, 

and at this point there are no data to suggest that code-based data 

collection systems are better than name-based systems. 

The reason for code-based systems originally were based on very 

valid concerns from members of affected communities about potential discrimination and about potential non-public health uses of 

data. 

Senator COBURN. I understand that. I understand the background on it. Well, given the fact that the law says name-based reporting, and they have about 18 months to do it, why would we not 

send a stronger signal to say: You need to be moving here? 

Dr. JANSSEN. Well, I think this is a strong signal. I think the 

shift from an advisory condition to a recommendation is actually a 

very large move on the basis for CDC and for the Department, and 

I think that does signify a major shift, and I think there are a 

number of jurisdictions right now who are looking at how difficult 

it is to use code-based systems, and concerned, as Mr. Montgomery 

noted, about potentially losing Ryan White funds because of the 

use of code-based systems. 

21

Senator COBURN. That is my whole point. If, in fact, the law says 

you will use HIV name reporting and, in fact, in his testimony, Mr. 

Montgomery said that the CDC will need to develop a methodology 

to establish estimates of HIV cases for these States. That is not 

what the law says. And I am not sure CDC has the authorization 

under the Ryan White Act to do that, because of what the law 

states, as the primary author of that bill in the year 2000. Is it 

your understanding that the law does not allow for that, and only 

counted cases of HIV disease reported to and confirmed by CDC? 

That is what the law says CDC will be acceptable for Federal funding. So is it clear to CDC that is what the law says? 

Dr. JANSSEN. Absolutely. What we are doing is working—we feel 

very strongly that the best data are reported cases. For some purposes we have to use modeled estimates for data, but for this case, 

we feel very strongly that the best data are case counts of reports. 

Senator COBURN. And we know that because that is a public 

health strategy that has worked in numerous other diseases, correct? 

Dr. JANSSEN. Including AIDS. 

Senator COBURN. Right. Let me refer to something—I keep wanting to call on you, Dr. Parham. I am sorry. Dr. Hopson talked 

about the decline in perinatal transmission of HIV. Why did that 

come about? 

Dr. JANSSEN. It has come about because of the effectiveness of 

any antiretrovirals for preventing mother to child transmission, 

from the old 076 trial. And now what is happening more recently 

is that mothers are on HAART, and that even more effectively reduces transmission. AZT by itself cut it in half. HAART now reduces it to less than 2 percent. 

Senator COBURN. What about the fact that affected mothers who 

are pregnant who are tested for HIV so we know their status? 

Dr. JANSSEN. Right, that is also part of it. The first thing we 

have to have is the intervention, and then once we have that, we 

need to identify the people who benefit from that intervention, and 

in fact, as you pointed out, that is what getting people tested has 

done. 

Senator COBURN. Actually, I would portend to you that it is reversed. You need to identify. Because what we did know before we 

had the 076 study and before we had HAART therapy, that if in 

fact we eliminated breast feeding from women that transmitted—

we knew what the percentage was of transmittable disease in 

terms of pregnancy, and if in fact we eliminated breast feeding, 

and if we did a caesarian section. And we did some of the other 

things that lessened the disease. 

So that is one of the things that kind of troubles me about this. 

Knowing the vectors and treating them with respect, but also 

knowing where the risk factors are has to become a complete part 

of our model. 

The other thing I wanted to talk with you about, on names-based 

reporting, is that if States are going to be compliant for 2007 funding that would mean they need to start next month. Is that right? 

Dr. JANSSEN. They would need to start as soon as possible. 

Senator COBURN. How will they meet the requirements under the 

2000 CARE Act if they have not started in July? 

22

Dr. JANSSEN. We have been working with, and intend to continue 

to work with, health departments and provide as much support as 

we possibly can to enable them to meet the obligations that they 

have. 

Senator COBURN. Is that something different than you told me 

before in terms of HIV name-reporting under the law? 

Dr. JANSSEN. No. I think what we are doing is we are making 

a recommendation for name-based reporting, and we have been and 

will continue to work with States to develop the best systems that 

they can use. 

Senator COBURN. All right. 

Mr. Montgomery, has California conducted any evaluation of its 

HIV reporting system for accuracy and reliability? 

Mr. MONTGOMERY. We have had insufficient funding to do a complete study of it. We have studied how closely we are adhering to 

CDC standards, and in most of the measures we are, except for the 

percentage that report Social Security numbers. But we believe our 

system is very accurate. It is also, as Dr. Janssen implied, very 

cumbersome, and it has been in operation for nearly 3 years, and 

we have only two-thirds of the prevalent cases reported, so it obviously has some challenges. 

Senator COBURN. A California performance review recently found the State will risk losing up to $50 million annually in Ryan White 

CARE Act funds if the CDC does not confirm California’s reported 

HIV cases for fiscal year 2007. California can prevent this loss if 

it converts its HIV reporting system to names-based AIDS reporting system. You have a names-based AIDS reporting system, correct? 

Mr. MONTGOMERY. We do. 

Senator COBURN. And are there difficulties with that reporting 

system? 

Mr. MONTGOMERY. There are not. 

Senator COBURN. All right. 

Dr. Hopson, Mr. Montgomery and NASTAD have proposed requiring unobligated funds be redistributed back into the ADAP 

fund. This could result in $30 million more for ADAP next year, 

and most likely much smaller amounts in the years that follow. 

Can you comment on his proposal? 

Ms. HOPSON. I have not see the NASTAD proposal, so, no I cannot comment at this time. 

Senator COBURN. Can you provide for us the total amount spent 

by the CARE Act on planning activities for the past 2 years? 

Ms. HOPSON. That I can provide. For the years in question, 2003 

and 2004 in the Title I program, we spent $30.3 million for planning council support. This represents 2.4 percent of the Title I appropriation for those years. 

In Title II the consortia spent $48.7 million on grantee planning 

and evaluation, on consortia needs assessment plan and evaluation 

activities, and that represented 2.3 percent of the Title III appropriation for those years. 

And in the Title III program we have a planning grant program. 

We did not fund any planning grants in 2004, but we did fund five 

planning grants in 2003, and the amount was for $299,058, which 

is 0.07 percent of the Title III appropriation for those years. 

23

Senator COBURN. OK, thank you. Do you believe that the priority 

of the CARE Act should first and foremost be to provide direct 

medical care and medication to Americans living with HIV/AIDS, 

regardless of geography, and only after that should other non-essential funds be used? 

Ms. HOPSON. Yes, I do, and certainly the first principle that 

President Bush outlined was that we should focus the Federal resources, meaning the Ryan CARE Act resources, on life extending 

medical care such as antiretroviral therapy, doctors visits, and lab 

tests and so forth. These are the core services that many are talking about in terms of the CARE Act, so, yes, that is the first principle that the President has outlined and the way that we should 

look at prioritizing funding—prioritizing how we fund grantees in 

the Ryan White CARE Act. 

Senator COBURN. Should unspent CARE Act funds then be redistributed to where there is a need? 

Ms. HOPSON. That is another one of the President’s principles 

that he has outlined, is that we need to have flexibility so that the 

Secretary of HHS would have flexibility to redistribute funds to the 

areas of greatest need or to target those funds, better target those 

funds. 

Senator COBURN. Dr. Crosse, based on the charts that you put 

up there in terms of the disproportion—and I know there is some 

question about whether that accurately reflects care given with all 

the other models of care and organizations that have been there—

is there any recommendation that you can make to us that would 

help us redistribute fairly under Title I, Title II, Title III and Title 

IV—given the least harm to those in place, organizations that are 

offering services, but yet create a fairer and more equitable distribution of funds based on care and outcome? 

Ms. CROSSE. Well, I do not think that we could give you a simple 

recommendation on what to do. Among all of the things that we 

have examined for this testimony, we found all these provisions 

that are leading to variability in the funding, and that are not necessarily counterbalanced by other provisions that we have not discussed today. 

Clearly, some of the provisions I think are more distorting of the 

funding than others. Things such as minimum grant provisions 

may be necessary, for example, for States with very small numbers 

of cases in order to be able to maintain any sort of a program at 

all. But we certainly have some concerns about some of the holdharmless funding, whether that should be maintained with as 

gradual a decline as it has been in the previous reauthorizations, 

or whether it is essential in all of these programs at all. 

As you correctly pointed out, the hold-harmless funding for the 

EMAs primarily benefits one. If that hold-harmless provision were 

eliminated, depending upon the assumptions you make, at most we 

believe three EMAs might lose money. The other 48 of the 51 

EMAs would gain money, including 18 of the 21 that are receiving 

hold-harmless funding. So there clearly are some distortions in the 

way that the current bill has played out. 

It does not take into account necessarily the variability in need 

across States, which is a much more complex question, but clearly 

the funding provided by the Federal Government through this proVerDate 0ct 09 2002 13:39 Aug 01, 2006 Jkt 022197 PO 00000 Frm 00029 Fmt 6633 Sfmt 6633 C:\DOCS\22197.TXT SAFFAIRS PsN: PAT
24

1 Article from the Associated Press appears in the Appendix on page 136. 

gram is not in proportion to the prevalence of the disease as it currently stands. 

Senator COBURN. Dr. Janssen, I am going to enter into the record 

an article that was place in the Atlanta paper by Associated Press,1

based on the CDC’s press release in terms of your new data. And 

I have one or two questions. Of that number, what percentage are 

unaware of their HIV status? 

Dr. JANSSEN. We estimate that about 25 percent of people living 

with HIV are unaware of their HIV status. 

Senator COBURN. So 250,000 people in this country are unaware 

of their HIV status. 

Dr. JANSSEN. Approximately, yes. 

Senator COBURN. Which means they are going to rapidly 

progress over the next 8 to 10 years. They are also going to infect 

others. And what is the CDC’s position on how we approach that 

250,000 people? 

Dr. JANSSEN. In April 2003, we launched Advancing HIV Prevention. A large part of that is focusing on increasing testing, availability of testing, and recommending testing. The first part of that 

is routine offering in medical care settings. We will be coming out 

with new guidelines at the end of this year based on making recommendations about more routine testing and screening in health 

care settings. Those should be available by September or October 

of this year. 

We also have been encouraging and stimulating the use of rapid 

testing for outreach purposes. We have an article that will be published tomorrow in the Morbidity and Mortality Weekly Report, on 

a model that we are calling Social Networks, where people who are 

living with HIV recruit friends, sex partners, drug-using network 

partners to come in and get tested, people who they think may be 

infected who do not know if they are infected. We are reporting 

those data tomorrow which showed that about 5.7 percent of people 

recruited in nine demonstration projects that we funded tended to 

be new HIV diagnoses. That is about 21⁄2 times what we routinely 

get out of our counseling-testing system. 

Senator COBURN. Is there any concern on your part that this 

level incidence of HIV may be getting ready to bump up from 

40,000 cases? 

Dr. JANSSEN. I think that as we look at a variety of different 

pieces of data to try to triangulate on what that real number is, 

I think my major concern is that number is not going down. The 

increase we are seeing in HIV reports among men who have sex 

with men are of concern. What we do not know is whether they reflect new infections or whether we are seeing more testing. 

Because of Advancing HIV Prevention, I am anticipating we may 

see a bump in HIV reports because of increases in diagnoses, so 

that is going to be confusing. Our HIV surveillance, incidence surveillance system is being implemented right now. We anticipate 

having our first national HIV incidence estimate ready by mid fall 

of 2006. 

25

1The chart entitled ‘‘EMA Funding Amounts per AIDS Case, fiscal year 2004,’’ submitted by 

Senator Coburn appears in the Appendix on page 109. 

Senator COBURN. I want you to look at this chart.1 We drew this 

chart up just so you can see the disparity that is happening 

through Ryan White funding now. I think there are six other EMAs 

in California that suffer directly because of the excess protections 

that are afforded San Francisco. That is all of the EMAs in the 

country. And if you look at that, what you can see is a significant 

disproportion, so it is pretty hard to defend—even though there are 

wonderful programs in the San Francisco EMA, it is pretty hard 

to defend this kind disproportion funding. Ideally we would like to 

see it higher for everybody, but the point is, is the CARE Act going 

to have to be changed to straighten that out, and in a gentle way 

that does not disrupt the institutional structures that are there? 

In 2003, you launched the new initiative, Dr. Janssen, Advancing 

HIV Prevention, with four key strategies that emphasized routine 

HIV testing. How many States have adopted those strategies? 

Dr. JANSSEN. We have not done a systematic assessment of the 

number of States that have adopted strategies. However, in the 

new Health Department Cooperative Agreement, which the funding 

began January 2004, we did put some directives into the language 

in that announcement. The first was that community planning 

groups would prioritize people living with HIV as the No. 1 priority 

group for prevention interventions in their jurisdictions. In addition 

to which we encouraged use of changing testing, looking at where 

they are getting higher yields, moving money from one place to another in terms of getting better yields in terms of testing. 

In 2003 and 2004, we purchased 700,000 rapid tests for use in 

out of medical care settings. In 2005 we spent $2.3 million on the 

oral fluid test, again for increasing access to testing away from 

medical care settings, out in the community. 

In addition, for community based organizations we have in the 

new program announcement that was funded June 1 last year, 

about two-thirds of the funds—I am sorry—about 60 percent of the 

funds in that new program announcement were all directed Advancing HIV Prevention activities. 

Senator COBURN. So you have markedly increased rapid testing. 

On the STD clinics that you fund through prevention, are these 

recommendations in terms of the Advancing HIV Prevention incorporated in those grants, in that money for the CDC funded STD 

clinics? 

Dr. JANSSEN. For HIV testing and activities in those STD clinics, 

yes. 

Senator COBURN. So they are following this advancing program. 

Dr. JANSSEN. They are. And what we will be encouraging more 

this year, some clinics have developed an opt-out approach to testing. There is an example in Texas actually where they have been 

doing this for a number of years, and we are looking at other STD 

clinics as demonstration projects later this year to actually implement opt-out testing in those settings. 

Senator COBURN. Mr. Montgomery, I want to give you a chance 

to respond to anything that we might have said about this or any 

other area. I do not want you to feel cut off as you leave here, and 

26

I do look forward to working with you to solve the problems in 

California because there is a concentration, but just as important 

is solving the problems here in Washington, DC with the unmet 

need that is not being met. And if you have anything you would 

like to say, I would love to hear it. 

Mr. MONTGOMERY. Thank you for the opportunity. Yes, I have a 

couple things I would like to say, and one is I wanted to clarify the 

earlier discussion about the need for estimated cases to incorporate 

HIV in 2007. I was talking about both names-based and code-based 

reporting, but the systems that are immature is really what I was 

addressing. 

I would like to go back to comments I made in my testimony, and 

say that I think that the discussion of using AIDS cases as a measure of equity is a very complicated issue. I appreciate that in your 

question to GAO, you included Title III and Title IV and Part F 

in that formula, and I would really encourage you to ask GAO to 

look at all titles and how that affects the per-AIDS case formula. 

In California’s case if you use Title I and Title II, California is 

above average for the per-AIDS case measure. If you add in Title 

III, IV and Part F, California is below average in terms of the average expenditure per case. 

Senator COBURN. That is a great challenge. We will ask it. 

Mr. MONTGOMERY. And I think that is a measure of the reauthorization in 2000 that you worked so hard on, there was language put in there to encourage HRSA to direct Title III funds to 

non-EMA areas, and that has had an impact, and I congratulate 

you on putting that in the language. 

And I would also encourage you to discuss with GAO looking at 

the effect of using an estimated living AIDS case formula, which 

inherently underestimates in some jurisdictions the impact of the 

epidemic. For California it underestimates our epidemic significantly, and it underestimates our living AIDS cases by 30 percent, 

which is a profound effect. 

Senator COBURN. But that is where we find ourselves in trouble. 

We are afraid to go out and test. 

Look, this is a treatable controllable epidemic. It is controllable. 

If we will all get tested and all get treated, we can break the back 

of the AIDS epidemic as you wanted to do, Dr. Janssen. But the 

fact is, nobody has the courage to stand up and say we need to 

treat this. We need to go after those people that are going to discriminate on the basis of this disease, and then we need, as a Nation, to stop this. The best HIV prevention is to test everybody and 

know where they are so that they, first of all, can be treated early 

with life saving drugs so they do not progress, and so they do not 

infect anybody else. 

Just to give a little history, when I was here in 1996, ACOG refused to recommend prenatal testing of pregnant women for HIV, 

refused adamantly. Well, you cannot treat pregnant women with 

HIV if you do not know their status. 

Now that we are following a public health strategy on HIV for 

pregnancy, what have we seen? We have seen a 76 percent reduction in infection. That means people are going to have to get treated, whereas before that, they were not being treated, and their life 

would be limited. 

27

So my caution is, is for us all to take our biases out of the room 

and say, ‘‘How do we treat this disease as a Nation?’’ We can make 

a big difference next year if we all will just say, ‘‘Let us do the 

right thing. Let us test. Let us go after this disease. Let us not let 

one innocent person, one individual in this country get this disease.’’ We could do that. But it takes all of us walking from all 

stripes of life, every angle, every philosophy, working together and 

say the enemy is not each other, the enemy is the disease, and we 

need to go after the disease. 

Anybody else want to offer any comments? Dr. Crosse. 

Ms. CROSSE. Yes. I would just, in response to Mr. Montgomery, 

let him know that as part of the work we are doing for the Chairman and the other requesters, we are examining other portions of 

the CARE Act. 

Senator COBURN. I want to thank each of you. You will be receiving some extra questions from us in written form. We would love 

to have you send those back to us within 2 weeks. 

And I will give Senator Carper an opportunity to ask questions 

because I was just about ready to dismiss the panel. 

Senator CARPER. I am glad you are still here. I have just one 

question. I think I am going to ask Dr. Janssen, if you would, to 

respond to this for me, please. I think you spoke to this in your testimony, but I want to come back and revisit it. 

It seems that most stakeholders support distributing Ryan White 

funds based on the number of HIV cases in an area instead of the 

number of AIDS cases in a particular area, at least that is my 

sense. However, I am concerned that a number of States, including 

my own State of Delaware, may be in danger of losing a large portion of our funding because CDC will not accept the type of HIV 

data that we collect and that some other folks collect. I think your 

testimony notes that name-based reporting has been shown to—

and I think these may be your words in your testimony—achieve 

high levels of accuracy and reliability. But you do not seem to be 

saying that code-based reporting cannot be improved or made more 

accurate. 

In fact, the Institute of Medicine did a study, a study I think you 

reference in your testimony. They recommended that CDC accept 

HIV data from all States, including those that have code-based systems. The Institute of Medicine has also said that duplicate cases 

could be estimated and that procedures could be developed to adjust for this. 

What I would just ask, is CDC pursuing this option? Should I be 

worried that in 2007 CDC will not accept my State’s data and 

maybe the data of some other States as well? 

Dr. JANSSEN. In terms of coded identifiers, we have conducted an 

evaluation, a pilot evaluation last year which ended early this year, 

and which I had told Senator Coburn that showed mixed results 

in terms of how some of these codes worked. In some areas they 

worked, in some not, at least in a pilot. 

We still are in the process of developing a full evaluation of coded 

identifiers. So even that effort has not been developed. It is possible 

to develop it and we are working on it. 

A bigger concern, however, is de-duplication across jurisdictions, 

from one State to another. In an area, such as Maryland, WashVerDate 0ct 09 2002 13:39 Aug 01, 2006 Jkt 022197 PO 00000 Frm 00033 Fmt 6633 Sfmt 6633 C:\DOCS\22197.TXT SAFFAIRS PsN: PAT
28

ington, DC, and Virginia, up to 20 percent of cases could be reported from more than one jurisdiction. So there is a lot of overlap. 

Nationwide it is about 2 percent I believe, where——

Senator CARPER. So you could have one person whose case is 

being reported in the District, and the same person whose case is 

reported in the State of Maryland? 

Dr. JANSSEN. In Maryland, yes. 

Senator CARPER. And would you say that is unusual? 

Dr. JANSSEN. That is unusual. It is more like 2 percent nationwide. I have to check with Dr. McKenna, who is our surveillance——

Senator CARPER. Where is Dr. McKenna? 

Dr. JANSSEN. Right here. So it is 4 percent for AIDS and 9 percent for HIV. So 20 percent is pretty high. The problem is when 

you have different codes across those boundaries, it is virtually impossible to de-duplicate cases. 

We have talked about this a fair amount, and we believe from 

an academic perspective conceptually one might be able to develop 

such methods, but practically, we are not convinced it is possible. 

So that, I think, is probably for us—and was mentioned earlier—

the most difficult problem is trying to de-duplicate cases across 

State boundaries. 

There is also a problem within States with codes, and we have 

not—it is not proven; it is a conceptual problem—and that is in jurisdictions it is not just the HIV test that is reported to the health 

department. CD–4 counts are reported, viral loads are reported. So 

someone in care might be reported to the health department 7, 8, 

or 10 times a year. Over years they could be reported 40 or 50 

times to the health department. If they go to different providers 

and the code is changed in just one way, they would be counted 

multiple times. 

So that becomes a problem where you have people who are in 

care reported multiple times, and then you have somebody who is 

just diagnosed and not in care. And so they end up not being represented equally with the people who are in care. So that is a potential problem with codes even within a State. 

So your question was, can codes be made to work better than 

names or even as good as names? At this point we have no evidence that codes are better than names. We have evidence, as Mr. 

Montgomery mentioned, in California, for example, where actually 

the system is fairly cumbersome and difficult and expensive. 

So those are some of the reasons that we are recommending that 

States use name-based systems. 

Senator CARPER. Anybody else on the panel want to take a shot 

at what I just asked? Mr. Montgomery, did you? 

Mr. MONTGOMERY. We now have 3 years of experience of operating a codes-based system and it is an extremely complicated system. We think it is very accurate. But we think that it is, as Dr. 

Janssen said, very expensive, and has caused backlogs within the 

health department, so we are concerned about our ability to carry 

out a code-based system. 

Senator CARPER. OK. A quick follow up, if I could, Dr. Janssen. 

You mentioned a pilot study that was conducted earlier. When was 

that, this year, last year? 

29

1The article from the Los Angeles Times appears in the Appendix on page 231. 

Dr. JANSSEN. It was finished at the end of last year in terms of 

data collection. Analysis was done in the spring. 

Senator CARPER. And you mentioned that there is a more comprehensive evaluation. Is it under way or planned? 

Dr. JANSSEN. Being developed. 

Senator CARPER. And when would you expect that to be done? 

Dr. JANSSEN. The end of next year, 2006. 

Senator CARPER. Our thanks to each of you. Thanks for joining 

us. And I learned a new word today, de-duplicate. [Laughter.] 

This is a good job we have, we learn something every day. That 

is my new word. 

Senator COBURN. I would just like unanimous consent to enter 

this article into the record.1 The Los Angeles Times reported that 

county health officials are being allowed to peruse medical records 

in California, complete with patient names, to ensure the cases are 

being reported. 

If it is true, that would undermine the whole concept of a codebased system. The fact is, as California right now, through your office, is recommending that it is going to have to spend $500,000, 

I believe, is to formally evaluate the system and determine whether 

the system meets CDC’s minimum guidelines. 

We are running short on time, and we know what the law says. 

The message ought to be, get a names-based system since the 

names-based system on AIDS is working and not being violated, 

and we know it works, and we know we are going to have better 

success. And you are going to save a lot of money, and that money 

that you save is going to treat a lot of folks. 

Thank you each for being here. 

[Whereupon, at 4:21 p.m., the Subcommittee was adjourned.] 

(31)

A P P E N D I X 

PREPARED STATEMENT OF SENATOR AKAKA 

Thank you, Mr. Chairman, for having this hearing today and allowing me to address the Subcommittee regarding the effectiveness of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. 

The Centers for Disease Control and Prevention (CDC) announced that as of the 

end of 2003, more than a million people in the United States were estimated to be 

living with HIV. This bleak statistic is a return to levels experienced in the 1980s. 

The HIV/AIDS epidemic is growing among traditionally under-served and hard-toreach populations. In my home state of Hawaii, as of December 31, 2004, there were 

2,779 people infected with HIV or who have AIDS, as reported by the Department 

of Health. Of that total, 19 percent were Asian/Pacific Islander, 11 percent were Native Hawaiians, 6 percent were Hispanic and 5 percent were African-Americans. It 

is estimated by Hawaii’s STD/AIDS Prevention Branch that there are an equal 

number of people infected, but who do not know it. A growing number of these reported cases are among Native Hawaiian and Pacific Islanders. 

People are living longer with HIV. However, the rate of infection remains at unacceptable levels. Meanwhile, the President’s proposed budget has not adequately 

funded the CARE Act. While funding may be described as level, the number of people living with the disease is growing. This means fewer dollars are available to 

help people in need. If this trend continues, we will see more sick people not receiving the care they so desperately need to stay alive, which is why we must increase 

funding for the CARE Act. It is frustrating to me to see funding remain level, while 

demand grows for the vital services that the CARE Act provides. 

Mr. Chairman, as the number of Americans living with HIV crosses the one million mark, the CARE Act represents yet another vital Federal health care program 

that is not receiving adequate funding. Increasing funding for the CARE act will expand health care services for HIV positive/AIDS patients, to eliminate wait lists for 

AIDS drug assistance programs, to provide housing for those in need, and to ensure 

that women, children and families impacted by HIV/AIDS receive the adequate care 

and counseling they need. We know that getting people into treatment early slows 

the decline of their immune systems and saves money by allowing people to continue to work. 

At the same time, we must remain diligent in our prevention message. Governments, at all levels, must redouble their prevention efforts, especially in minority 

communities because the epidemic continues to grow disproportionately among people of color, women and young people. Also, access to quality health care services 

for all persons with HIV/AIDS, regardless of geographic location, needs to be a priority. 

Mr. Chairman, the need to provide health care services for HIV positive and AIDS 

patients continues to grow. Again, thank you for calling today’s hearings. I look forward to our witnesses’ testimony.

32


22197.001
33


22197.002
34


22197.003
35


22197.004
36


22197.005
37


22197.006
38


22197.007
39


22197.008
40


22197.009
41


22197.010
42


22197.011
43


22197.012
44


22197.013
45


22197.014
46


22197.015
47


22197.016
48


22197.017
49


22197.018
50


22197.019
51


22197.020
52


22197.021
53


22197.022
54


22197.023
55


22197.024
56


22197.025
57


22197.026
58


22197.027
59


22197.028
60


22197.029
61


22197.030
62


22197.031
63


22197.032
64


22197.033
65


22197.034
66


22197.035
67


22197.036
68


22197.037
69


22197.038
70


22197.039
71


22197.040
72


22197.041
73


22197.042
74


22197.043
75


22197.044
76


22197.045
77


22197.046
78


22197.047
79


22197.048
80


22197.049
81


22197.050
82


22197.051
83


22197.052
84


22197.053
85


22197.054
86


22197.055
87


22197.056
88


22197.057
89


22197.058
90


22197.059
91


22197.060
92


22197.061
93


22197.062
94


22197.063
95


22197.064
96


22197.065
97


22197.066
98


22197.067
99


22197.068
100


22197.069
101


22197.070
102


22197.071
103


22197.072
104


22197.073
105


22197.074
106


22197.075
107


22197.076
108


22197.077
109


22197.078
110


22197.079
111


22197.080
112


22197.081
113


22197.082
114


22197.083
115


22197.084
116


22197.085
117


22197.086
118


22197.087
119


22197.088
120


22197.089
121


22197.090
122


22197.091
123


22197.092
124


22197.093
125


22197.094
126


22197.095
127


22197.096
128


22197.097
129


22197.098
130


22197.099
131


22197.100
132


22197.101
133


22197.102
134


22197.103
135


22197.104
136


22197.105
137


22197.106
138


22197.107
139


22197.108
140


22197.109
141


22197.110
142


22197.111
143


22197.112
144


22197.113
145


22197.114
146


22197.115
147


22197.116
148


22197.117
149


22197.118
150


22197.119
151


22197.120
152


22197.121
153


22197.122
154


22197.123
155


22197.124
156


22197.125
157


22197.126
158


22197.127
159


22197.128
160


22197.129
161


22197.130
162


22197.131
163


22197.132
164


22197.133
165


22197.134
166


22197.135
167


22197.136
168


22197.137
169


22197.138
170


22197.139
171


22197.140
172


22197.141
173


22197.142
174


22197.143
175


22197.144
176


22197.145
177


22197.146
178


22197.147
179


22197.148
180


22197.149
181


22197.150
182


22197.151
183


22197.152
184


22197.153
185


22197.154
186


22197.155
187


22197.156
188


22197.157
189


22197.158
190


22197.159
191


22197.160
192


22197.161
193


22197.162
194


22197.163
195


22197.164
196


22197.165
197


22197.166
198


22197.167
199


22197.168
200


22197.169
201


22197.170
202


22197.171
203


22197.172
204


22197.173
205


22197.174
206


22197.175
207


22197.176
208


22197.177
209


22197.178
210


22197.179
211


22197.180
212


22197.181
213


22197.182
214


22197.183
215


22197.184
216


22197.185
217


22197.186
218


22197.187
219


22197.188
220


22197.189
221


22197.190
222


22197.191
223


22197.192
224


22197.193
225


22197.194
226


22197.195
227


22197.196
228


22197.197
229


22197.198
230


22197.199
231


22197.200
232


22197.201
233


22197.202
234


22197.203
235


22197.204
236


22197.205
237


22197.206
238


22197.207
239


22197.208
240


22197.209
241


22197.210
242


22197.211
243


22197.212
244


22197.213
245


22197.214
246


22197.215
247


22197.216
248


22197.217
249


22197.218
250


22197.219
251


22197.220
252


22197.221
253


22197.222
254


22197.223
255


22197.224
256


22197.225
257


22197.226
258


22197.227
259


22197.228
260


22197.229
261


22197.230
262


22197.231
263


22197.232
264


22197.233
265


22197.234
266


22197.235
267


22197.236
268


22197.237
269


22197.238
270


22197.239
271


22197.240
272


22197.241
273


22197.242
274


22197.243
275


22197.244
276


22197.245
277


22197.246
278


22197.247
279


22197.248
280


22197.249
281


22197.250
282


22197.251
283


22197.252
284


22197.253
285


22197.254
286


22197.255
287


22197.256
288


22197.257
289


22197.258
290


22197.259
291


22197.260
292


22197.261
293


22197.262
294


22197.263
295


22197.264
296


22197.265
297


22197.266
298


22197.267
299


22197.268
300


22197.269
301


22197.270
302


22197.271
303


22197.272
304


22197.273
305


22197.274
306


22197.275
307


22197.276
308


22197.277
309


22197.278
310


22197.279
311


22197.280
312


22197.281
313


22197.282
314


22197.283
315


22197.284
316


22197.285
317


22197.286
318


22197.287
319


22197.288
320


22197.289
321


22197.290
322


22197.291
323


22197.292
324


22197.293
325


22197.294
326


22197.295
327


22197.296
328


22197.297
329


22197.298
330


22197.299
331


22197.300
332


22197.301
333


22197.302
334


22197.303
335


22197.304
336


22197.305
337


22197.306
338


22197.307
339


22197.308
340


22197.309
341


22197.310
342


22197.311
343


22197.312
344


22197.313
345


22197.314
346


22197.315
347


22197.316
348


22197.317
349


22197.318
350


22197.319
351


22197.320
352


22197.321
353


22197.322
354


22197.323
355


22197.324
356


22197.325
357


22197.326
358


22197.327
359


22197.328
360


22197.329
361


22197.330
362


22197.331
363


22197.332
364


22197.333
365


22197.334
366


22197.335
367


22197.336
368


22197.337
369


22197.338
370


22197.339
371


22197.340
372


22197.341
373


22197.342
374


22197.343
375


22197.344
376


22197.345
377


22197.346
378


22197.347
379


22197.348
380


22197.349
381


22197.350
382


22197.351
383


22197.352
384


22197.353
385


22197.354
386


22197.355
387


22197.356
388


22197.357
389


22197.358
390


22197.359
391


22197.360
392


22197.361
393


22197.362
394


22197.363
395


22197.364
396


22197.365
397


22197.366
398


22197.367
399


22197.368
400


22197.369
401


22197.370
402


22197.371
403


22197.372
404


22197.373
405


22197.374
406


22197.375
407


22197.376
408


22197.377
409


22197.378
410


22197.379
411


22197.380
412


22197.381
413


22197.382
414


22197.383
415


22197.384
416


22197.385
417


22197.386
418


22197.387
419


22197.388
420


22197.389
421


22197.390
422


22197.391
423


22197.392
424


22197.393
425


22197.394
426


22197.395
427


22197.396
428


22197.397
429


22197.398
430


22197.399
431


22197.400
432


22197.401
433


22197.402
434


22197.403
435


22197.404
436


22197.405
437


22197.406
438


22197.407
439


22197.408
440


22197.409
441


22197.410
442


22197.411
443


22197.412
444


22197.413
445


22197.414
446


22197.415
447


22197.416
448


22197.417
449


22197.418
450


22197.419
451


22197.420
452


22197.421
453


22197.422
454


22197.423
455


22197.424
456


22197.425
457


22197.426
458


22197.427
459


22197.428
460


22197.429
461


22197.430
462


22197.431
463


22197.432
464


22197.433
465

Æ


22197.434