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23–758 PDF 2005

S. HRG. 109–147

HIV OVER FIFTY: EXPLORING THE NEW THREAT

HEARING

BEFORE THE

SPECIAL COMMITTEE ON AGING 

UNITED STATES SENATE

ONE HUNDRED NINTH CONGRESS

FIRST SESSION

WASHINGTON, DC

MAY 12, 2005

Serial No. 109–7

Printed for the use of the Special Committee on Aging

(

SPECIAL COMMITTEE ON AGING 

GORDON SMITH, Oregon, Chairman 

RICHARD SHELBY, Alabama 

SUSAN COLLINS, Maine 

JAMES M. TALENT, Missouri 

ELIZABETH DOLE, North Carolina 

MEL MARTINEZ, Florida 

LARRY E. CRAIG, Idaho 

RICK SANTORUM, Pennsylvania 

CONRAD BURNS, Montana 

LAMAR ALEXANDER, Tennessee 

JIM DEMINT, South Carolina 

HERB KOHL, Wisconsin 

JAMES M. JEFFORDS, Vermont 

RUSSELL D. FEINGOLD, Wisconsin 

RON WYDEN, Oregon 

BLANCHE L. LINCOLN, Arkansas 

EVAN BAYH, Indiana 

THOMAS R. CARPER, Delaware 

BILL NELSON, Florida 

HILLARY RODHAM CLINTON, New York 

CATHERINE FINLEY, Staff Director 

JULIE COHEN, Ranking Member Staff Director 

(II) 

C O N T E N T S 

Page 

Opening Statement of Senator Gordon H. Smith ................................................. 1

Opening Statement of Senator Herb Kohl ............................................................. 2

Opening Statement of Senator James Talent ....................................................... 22

PANEL I 

Robert S. Janssen, M.D., director, Division of HIV/AIDS Prevention, Centers 

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

Services, Washington, DC ................................................................................... 3

Jeanine Reilly, executive director, Broadway House for Continuing Care, 

Newark, NJ ........................................................................................................... 17

Shirley Royster, age 57, Living with HIV/AIDS, Boston, MA .............................. 23

Thomas Bruner, executive director, Cascade AIDS Project, Portland, OR ......... 29

APPENDIX 

Prepared Statement of Hillary Rodham Clinton ................................................... 39

Joint Testimony submitted by American Psychiatric Association and the 

American Association for Geriatric Psychiatry .................................................. 40

(III) 

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HIV OVER FIFTY: EXPLORING THE NEW 

THREAT 

THURSDAY, MAY 12, 2005 

U.S. SENATE, SPECIAL COMMITTEE ON AGING, Washington, DC. 

The committee met, pursuant to notice, at 3:12 p.m., in room 

SH–216, Hart Senate Office Building, Hon. Gordon H. Smith 

(chairman of the committee) presiding. 

Present: Senators Smith, Talent, and Kohl. 

OPENING STATEMENT OF SENATOR GORDON H. SMITH, 

CHAIRMAN 

The CHAIRMAN. Ladies and gentlemen, we want to welcome you, 

Senator Kohl and I, to this important hearing of the Aging Committee. We are grateful you are all here, and today we will be focusing on a growing problem that is too often overlooked: the increasing incidence of HIV and AIDS among persons over 50. 

We are very fortunate today to have with us a number of impressive witnesses who will share their insight on the unique issues 

and problems faced by seniors affected with HIV. Although we 

often hear how the face of HIV/AIDS is changing to include women, 

children, and people of color, we generally do not think of it as a 

problem facing America’s seniors. However, significant breakthroughs in the treatment of HIV, particularly the rise of highly effective antiretroviral therapies, have allowed infected persons to 

live longer and fuller lives. In other words, people with HIV are 

aging. 

Today in the U.S. 28 percent of those living with HIV/AIDS are 

over the age of 50. Moreover, by the year 2015, the number of those 

over 50 who are infected with HIV/AIDS will increase to 50 percent. As we will learn today, preventing the spread of HIV/AIDS 

among this population poses many unique challenges. Most notably, more than 70 percent of seniors with HIV/AIDS live alone, and 

few are connected with family or their churches. This often makes 

it more difficult for communities and health care workers to identify those in need and to reach out to them. 

Most also face challenges associated with managing other chronic 

illnesses common among the elderly, such as diabetes, high blood 

pressure, and heart disease, in addition to their HIV. Moreover, 

women, people of color, or non-English-speaking Americans generally face additional barriers to care. As the number of seniors living with HIV continues to grow, so, too, will the demand for services. We need to assure those seniors that have HIV/AIDS that 

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they are not alone, that they have a voice, and that they have 

access to the treatments and services they need. 

Stereotypes and lack of awareness about this disease is another 

challenge in preventing the spread of HIV among seniors. Many 

seniors are sexually active, and their behavior can put them at risk 

for HIV infection. Older women in particular are at risk because 

they no longer are under the threat of pregnancy due to menopause. Therefore, most do not believe condoms are necessary. Further, apprehension by health care providers about discussing sexual matters with seniors and failure of HIV/AIDS public health 

messages to focus on this age group contribute to an overall lack 

of awareness and increased risk among those over 50 years of age. 

Luckily, there are examples of how to reach this group. A number of Federal, State, and community programs, especially those in 

my State of Oregon, have made a very positive difference in helping seniors who are living with HIV/AIDS. However, I believe we 

can and should do more. 

Today’s hearing is focused on determining how well current programs work, whether they offer the tools and the resources needed 

to more effectively help people, and how to make their lives better. 

Today’s testimony will examine a number of areas specific to the 

elderly HIV community, including outreach and education, support 

programs, funding issues, and ensuring access to affordable drug 

treatments. Using this hearing as a starting point, I will be working with my colleagues on both sides of the dias here and the 

HIV/AIDS community to develop legislative proposals that result in 

increased public awareness about this growing threat to our Nation’s seniors and provide new ideas on how to improve the programs that serve them. With the Ryan White Act scheduled for reauthorization, I believe now is a good time to address this issue. 

It is my pleasure to turn the microphone now to my colleague, 

Ranking Member Senator Kohl. 

OPENING STATEMENT OF SENATOR HERBERT H. KOHL 

Senator KOHL. I thank you, Mr. Chairman, for bringing the important issue of HIV and AIDS in the senior population in front of 

the Aging Committee today. While much attention has been devoted to HIV and AIDS prevention for younger Americans, our 

growing aging population makes it necessary for us to consider how 

HIV and AIDS will begin to affect seniors in greater numbers. This 

is an issue that has been largely overlooked, so I hope this hearing 

will help educate older people on the prevention of HIV and AIDS. 

Although the majority of HIV and AIDS diagnoses are among 

persons between the ages of 25 and 39, there is now a growing 

awareness that those 50 and older are also at risk. HIV and AIDS 

cases are expected to increase as people of all ages survive longer 

due to new drug therapies. In addition, we need to make sure seniors have the information they need to prevent new infections from 

occurring. This is not a population that we can afford to ignore in 

our HIV and AIDS prevention and treatment programs. 

We look forward to hearing from our expert witnesses today who 

can help us better understand the challenges of educating older 

Americans as well as their health care providers on this subject. 

We also look forward to hearing suggestions for ways we can effecVerDate 0ct 09 2002 11:19 Oct 07, 2005 Jkt 000000 PO 00000 Frm 00006 Fmt 6633 Sfmt 6633 H:\DOCS\23758.TXT SAGING1 PsN: JOYCE
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tively stem this growing health problem and treat this unique population. 

So, again, we thank you, Mr. Chairman, for holding this hearing. 

I apologize I will not be able to stay for the entire hearing because 

of some other meetings I must attend this afternoon. But I look forward to working with you to move this important issue forward. 

I thank you. 

The CHAIRMAN. Thank you, my friend. 

We have as our first panelist Dr. Robert S. Janssen, director of 

the Division of HIV/AIDS Prevention from the Centers for Disease 

Control, the CDC, here in Washington, DC, Dr. Janssen, thank you 

for being here, and we look forward to your testimony. 

STATEMENT OF ROBERT S. JANSSEN, M.D., DIRECTOR, DIVISION OF HIV/AIDS PREVENTION, CENTERS FOR DISEASE 

CONTROL AND PREVENTION, U.S. DEPARTMENT OF HEALTH 

AND HUMAN SERVICES, WASHINGTON, DC 

Dr. JANSSEN. Thank you, Mr. Chairman. I want to thank the 

committee for inviting me here today to discuss HIV/AIDS among 

older Americans. 

In large part, as you have said already, we are here because of 

good news. Treatment is helping people live longer and healthier 

lives. I am aware also of the media and interest groups reporting 

increased rates of HIV among people aged 50 years and older. So 

to address the committee’s concerns related to these reports, I want 

to show you two types of data: data on the total number of people 

living with HIV and AIDS and on rates of newly diagnosed HIV. 

This data have been collected in 32 States with confidential namebased HIV reporting. 

The total number of people who are living with HIV is, as you 

mentioned, increasing, as you can see on this graphic. It is increasing in both those aged 50 and older, which is the pink line, and 

under 50, which is the yellow line. In the 32 States in the figure 

in 2000, about 40,000 people aged 50 and older were living with 

HIV/AIDS, so here in 2000. In 2003, that number had increased to 

about 67,000, and this line is increasing more rapidly than among 

younger people. But it is increasing in both. The most likely explanation, as we have already mentioned, is treatment is more effective than it used to be. People who are infected are living longer, 

healthier lives. 

On the other hand, we think that this is not related to new HIV 

transmission among this population. When you look at the second 

figure, the rates of newly diagnosed HIV infections among persons 

who are under 50 and those who are over 50, you can see those 

lines are flat. This is indirect evidence, at best, of HIV incidence—

that is, the number of new HIV cases or HIV transmission. It is 

the best data we have to date, but as you can see, there are no significant changes in rates in either of these lines. You can also see 

that the rate of newly diagnosed HIV infection is 3 to 4 times higher among those younger than 50 than among those aged 50 and 

older. 

The HIV/AIDS epidemic in our Nation, as you know, disproportionately affects racial and ethnic minority communities. This is 

also true for those aged 50 and older as well as for younger perVerDate 0ct 09 2002 11:19 Oct 07, 2005 Jkt 000000 PO 00000 Frm 00007 Fmt 6633 Sfmt 6633 H:\DOCS\23758.TXT SAGING1 PsN: JOYCE
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sons. Rates of newly diagnosed cases of HIV or AIDS among persons aged 50 and older are 10 to 15 times higher among African 

Americans than among whites and 5 times higher among Hispanics 

than among whites. 

Now, it is critical for CDC, along with State and local health departments and nongovernmental organizations, to prevent the most 

new infections that we can with the resources that we have available. For this reason, we focus services on those populations who 

are at the highest risk either of becoming infected or transmitting 

HIV. 

Although persons aged 50 and older account for less than onefifth of new HIV diagnoses, HIV transmission does remain a concern among this age group. Thus, it is important these individuals 

get information and prevention services to help protect them from 

acquiring and transmitting HIV. Among 141 community-based organizations from across the country that we fund, 112 or nearly 80 

percent include this age group as one of their target populations. 

They provide prevention services, which may include targeted outreach, can include voluntary counseling and testing, partner counseling and referral services, as well as health education and risk 

reduction. 

One of the challenges of prevention among persons 50 and older 

is the mistaken belief that they are not at risk, they are no longer 

at risk, or perhaps many people never considered themselves to be 

at risk for HIV or other STDs. Studies have noted that physicians 

do not always address sexual health with their older patients—I 

would say that is with any patient, but particularly with their 

older patients—creating a barrier to educating older adults about 

the risk of HIV. CDC recommends that physicians take a sexual 

history from their older patients and discuss their risk for HIV and 

STDs. 

Another important strategy to prevent HIV is to increase the 

number of people in this country who know that they are living 

with HIV, because when people become aware of their infection, 

they take steps to protect their partners. 

One way CDC strives to increase the number of people getting 

tested for HIV is to encourage testing in medical care settings. 

CDC strongly encourages all health care providers to include HIV 

testing, when indicated, as part of routine medical care and on the 

same voluntary basis as other diagnostic and screening tests. This 

approach is important in this age group in particular because older 

adults seek medical care more frequently than younger adults. 

I want to add one other thing that we are doing in our Advancing 

HIV Prevention, a new initiative launched two years ago to expand 

our reach with our HIV prevention services, and that is, part of it 

is to work with people living with HIV, particularly working with 

physicians caring for patients living with HIV, to address the prevention needs of their patients. That would include STD screening 

and taking a sexual history every year to be able to counsel those 

patients who may be engaging in risky behavior. I think this is 

critically important as we see on that curve the number of people 

infected in this age group is increasing. 

So, in summary, HIV/AIDS affects Americans from all age 

groups. All Americans need to know how to avoid infection and, if 

5

infected, get treated and know how to avoid transmitting HIV to 

others. 

Thank you again for this opportunity. I will be pleased to answer 

any of your questions. 

The CHAIRMAN. Doctor, did I understand you to say that sexual 

activity among those over 50 is not the reason for the increasing 

HIV population in this age category? 

Dr. JANSSEN. What our data suggest is that people living with 

AIDS—the number of people living with HIV or AIDS is increasing 

as opposed to the number of people becoming infected, so, yes, that 

would be right. 

The CHAIRMAN. OK. I understand. 

Dr. JANSSEN. So, really, as you stated, it is related to treatment. 

The CHAIRMAN. OK. In places where—particularly nursing 

homes and things like that, is there a regular course for patients 

to receive health care and are these questions generally asked, you 

know, in terms of their sexual history and the need to remain careful, if not celibate? 

Dr. JANSSEN. Well, our experience with working with health care 

providers for HIV is that even those providers taking care of 

younger adults tend not to ask those questions. I am not aware of 

data of people taking care of older adults and whether those questions are asked, but data in taking care of younger people in their 

20’s to 40’s who are HIV infected, sometimes only 30 or 40 percent 

of those individuals may be asked those types of questions. 

The CHAIRMAN. OK. I assume some States are more effective 

than others, as you have observed, in disseminating information 

about how to be careful, and protect themselves from infection. 

Have you seen any States that are doing a particularly good job? 

Is there a model that you would recommend that others follow? 

Dr. JANSSEN. Well, our prevention programs are very locally 

based. We use a model called community planning, which includes 

health department folks, community members, as well as scientific 

experts, to look at the needs of the specific location. We have said 

for years from the beginning of the epidemic that HIV varies from 

State to State, from city to city, and even within one city it can be 

different because different populations are affected, and how we 

reach those different populations varies. 

I think we have a number of good models for reaching and providing information as well as interventions that help reduce risk 

behavior. But I also will say that those models tend to be for 

younger people. 

The CHAIRMAN. I guess that is the point. Is there something we 

can do in terms of providing information to help educate older people to make them aware that they are not out of danger if they are 

sexually active in any way? 

Dr. JANSSEN. I think we need to do that for all people at risk, 

not only older Americans but younger Americans as well. 

I think one of the things that I am optimistic about being able 

to reach this population particularly is what I mentioned. This year 

we will be working to revise guidelines on routine screening in 

medical care settings. Because older people go to the doctor more 

frequently, it is more likely, I think, older people will get tested. 

6

So I am optimistic, in fact, that we will be more likely to pick up 

on recognized HIV infection in that older population. 

In addition, a larger proportion—I do not have the data; this is 

an assumption. The largest proportion of people living with HIV 

over the age of 50 know they are infected and are likely to be in 

care. So the way we can reach these people is working with their 

clinicians to provide the prevention services that they need to do. 

We provided guidelines, we published guidelines two years ago, 

working with HRSA and NIH and the Infectious Diseases Society 

of America, to do just that. 

We are in the process right now of developing a social marketing 

campaign for providers to do a better job. 

The CHAIRMAN. Well, clearly, all of us—and I did before this 

hearing; we decided on this topic because it is such a growing concern. I have always thought of this as a problem that young people 

should be extra careful about. I guess the point is we need to also, 

as you said, provide this education for all ages. I think people, if 

they are over 50, somehow I think there is a perception that they 

are immune from it at this point. Maybe there needs to be some 

special emphasis given to seniors to remind them they are not beyond risk either. So anything you can do on that score is obviously 

very important from the data we are discussing. 

Dr. JANSSEN. Well, I think the data—as I said, I think what we 

can do best in this area, there are two things that are being done. 

One, as I mentioned, 80 percent of our directly funded communitybased organizations—we fund 141 community-based organizations 

directly. They work across the country focusing primarily on people 

of color. About 80 percent of them already provide services for this 

age group. I think what you are suggesting, which I think is a good 

idea, we can take a look at some of those programs specifically for 

this older age group and see if we can identify some best practices, 

and we could certainly disseminate those types of interventions. 

The CHAIRMAN. Thank you very much. 

Senator Kohl. 

Senator KOHL. Thank you, Senator Smith. 

Dr. Janssen, in Wisconsin, and all across our country, we know 

that Federal HIV prevention funding is not adequate to meet our 

current needs. Dollars are stretched thin, and States are unable to 

reach many of those who are at high risk. Today we are shedding 

light on an emerging and even a more challenging segment of the 

population when it comes to HIV prevention efforts. 

So what can we do to include seniors in our prevention programs 

when funds for these programs are already stretched as thin as 

they are? 

Dr. JANSSEN. Well, I think you have stated it very well, Senator, 

which is funds are stretched. Because of that, we have focused our 

programs to those at the very highest risk—risk for becoming infected or risk for transmitting HIV, so working not only with people who are HIV negative currently, but also working with people 

who are currently living with HIV. I think not only I agree that 

we need to do a better job among people over the age of 50, but 

I would say we also need to do a better job among people younger 

as well. 

7

Our community planning programs try to target those highestrisk populations in those areas, and there are some areas, for example, in Florida where more work is done in the older age group 

than you might expect in other jurisdictions in the country. 

Senator KOHL. Senator Smith was discussing with you the lack 

of education in preventing HIV and AIDS in the elderly population. 

It concerns all of us that seniors are not getting the prevention information they need. I am also concerned, however—and Senator 

Smith and you discussed it—that health care providers are not 

adequately prepared to discuss prevention with seniors or effectively diagnose HIV in older individuals. 

So what steps is the CDC taking and what more can be done to 

ensure that health care providers are equipped to prevent and 

treat HIV/AIDS in our elderly population? 

Dr. JANSSEN. Well, I think one of the things that we are doing 

is, again, providing prevention in care. There is a social marketing 

campaign that we are developing and that should be launched next 

year aimed specifically at physicians who are caring for HIV-infected patients, and that would include the over 50 group as well. 

You know, as this is an aging group, we target our dollars to 

where the epidemic is, and, again, at those highest-risk populations. So as that group becomes a more important group, our dollars and resources will focus more and more on that group. 

I think one of the things we are doing also right now, the individuals living with HIV and at risk for HIV who are older have the 

same demographic characteristics or risk factors as younger people. 

They tend to be people of color. They tend to be men who have sex 

with men or injecting drug users or high-risk heterosexuals, individuals with multiple sexual partners, for example. They are the 

same people, same characteristics, as people who are younger and 

at risk for HIV. 

So I think we can use some of the same tools for reaching younger people for reaching older people as well. It is a little harder to 

reach older people. For example, young men who have sex with 

men are not hard to reach in particular because you can go to 

venues in cities where they gather. That is not so true for older 

people. Older people tend not to go to those types of venues. 

So I think one of the things, again, that we are looking at is not 

only doing outreach, some of our CBOs doing outreach to these 

populations within their communities, but, again, working in the 

medical care settings because so many people over the age of 50 

seek medical care. 

Senator KOHL. I thank you, Dr. Janssen, and I thank you, Mr. 

Chairman. 

The CHAIRMAN. Thank you, Senator Kohl. 

Dr. Janssen, thank you for helping us to highlight this growing 

problem, and we appreciate everything you will be doing at the 

CDC to help us get ahead of it. 

Dr. JANSSEN. Thank you very much for the opportunity. 

[The prepared statement of Dr. Janssen follows:]

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The CHAIRMAN. We will call now our second panel. That will consist of Mr. Thomas Bruner, executive director of the Cascade AIDS 

Project in Portland, OR. Tom, welcome. Also Shirley Royster, 59 

years old and living with HIV in Boston, MA, welcome, Shirley. 

Ms. Royster. Thank you. 

The CHAIRMAN. Ms. Jeanine Reilly, who is the executive director 

for Broadway House for Continuing Care in New Jersey. We thank 

you all. 

Why don’t we start with you, Jeanine, and we will go down the 

row to my constituent. 

STATEMENT OF JEANINE REILLY, EXECUTIVE DIRECTOR, 

BROADWAY HOUSE FOR CONTINUING CARE, NEWARK, NJ 

Ms. REILLY. All right. Thank you. 

The CHAIRMAN. You want to pull the microphone a little bit closer. 

Ms. REILLY. Thanks. My name is Jeanine Reilly, and I am a registered nurse and a licensed nursing home administrator. I have 

spent my career primarily as a long-term care nurse, but in the 

last five years I have served as the executive director of Broadway 

House for Continuing Care, a 74-bed long-term care facility serving 

the medical, social, and psychiatric needs of people living with 

AIDS. Broadway House is New Jersey’s only long-term care facility 

exclusively for people with HIV/AIDS. In fact, just a small handful 

of these facilities exist in our Nation. In addition, I am a board 

member of the National Association for HIV Over Fifty. 

The CHAIRMAN. Do you get people from other parts of the country 

coming to stay at this facility? 

Ms. REILLY. Yes, we do. 

The CHAIRMAN. Where are there other comparable facilities. 

Ms. REILLY. There is one in Connecticut, Leeway House; there is 

one in New York City in Greenwich Village; and I believe there is 

one in San Francisco, but I have not been able to locate it. 

The CHAIRMAN. OK. That is very helpful to know. 

Ms. REILLY. We have tried. There are very few facilities in the 

Nation. 

The CHAIRMAN. That is apparent. I am surprised by what you 

just said. But I hope it means that the population is going down. 

Ms. REILLY. It does not, no. 

The CHAIRMAN. But clearly it is not. I am sorry to interrupt you, 

but I was very curious. 

Ms. REILLY. That is OK. 

In my work at Broadway House, I have seen a dramatic change 

in my clients over the last few years. In 2001, the average age at 

Broadway House was 31 years old, up from 26 in 1995. Today the 

average age is 44 years old. 26–31–44, this disease is aging. 

According to the CDC, 11 to 15 percent of people with HIV in the 

United States are over the age of 50, and there are 3,000 people 

over the age of 60 who are living with the disease. The reasons for 

the increase among our seniors are positive and negative. 

The positive is that the remarkable drug cocktails—protease inhibitors—are prolonging life for AIDS patients in never seen before 

numbers. Medications allow people to grow older with this disease, 

a luxury not seen in the beginning of the epidemic. 

18

The negative is that, at least in New Jersey and Massachusetts 

and Florida, men and women over 50 are contracting the virus in 

never seen before numbers. Why? Baby boomers are not relinquishing their sexuality simply because they are getting older. 

Viagra and Cialis are not only available, but really ‘‘in our face’’ 

through commercials. Every senior knows what David Letterman 

and Jay Leno know, and that is, if you experience an erection for 

more than four hours, you should seek immediate medical attention. However, the message about the threat of HIV/AIDS is not 

there. Often condoms are not used because the risk of pregnancy 

for seniors is no longer an issue, and they do not imagine their 

peers as being potentially HIV positive. 

Sexual negotiation techniques are at this point in time a nonstarter for seniors. Asking a potential mate for his or her HIV status and insisting on the use of a condom is a difficult conversation 

at any age, never mind for our elders. 

In nursing homes, many people are contracting the disease while 

in long-term care, with some researchers calling nursing homes the 

‘‘new breeding ground for AIDS.’’ It is not unusual for prostitutes 

to visit long-term care facilities and assisted living facilities. Widows and widowers living in nursing homes who have lived 

monogamously for most of their lives seek companionship with 

other residents, sometimes with serious health implications. 

Younger HIV-positive people are being admitted to long-term care 

because their disease complicates their health status and makes 

them eligible for long-term care 20 or 30 years earlier than most 

people are. 

In short, long-term HIV/AIDS care is needed now for a new population—an older population for those working in the AIDS world, 

and a younger population for those working in the long-term care 

world. A collision of the two worlds is at hand. 

In addition, the stigma of HIV in the general population is clearly evident with long-term caregivers. At all levels, there is heightened concern of infection. Whether legitimate or not, people who 

work in nursing homes have often felt themselves free of infectious 

worries because they work in geriatrics. Therefore, the surety of an 

HIV/AIDS diagnosis terrifies many long-term care staff members 

and makes a resident with the disease the ‘‘He’s got AIDS’’ guy. 

My colleagues in traditional geriatric nursing homes are caring 

for HIV without the necessary skill set. They are expert in caring 

for the significantly old, which typically means 80 years old and 

older, not for a 50-something with AIDS. It gets more complex and 

confusing when you realize that AIDS mimics aging in many ways. 

This brings us to a core problem in treating those over 50 who 

are HIV positive: health care providers. 

When an older American goes to a doctor, it is not routine to review sexual or drug history, to educate around safer sex, or to consider an HIV diagnosis, even when suggestive symptoms are 

present. 

Medical providers are often uncomfortable discussing sex with 

seniors and often don’t really believe their elders are still sexually 

active. This leads to a much later diagnosis and a much more serious prognosis, with heterosexual a rapidly growing segment of infected older people. 

19

People over 50 have been omitted from research, from clinical 

trials, from prevention programs and intervention efforts when it 

comes to HIV and AIDS. 

Mother Teresa once said, ‘‘The biggest disease is not leprosy or 

tuberculosis. . . but rather the feeling of being unwanted, uncared 

for, and deserted by everybody.’’ HIV and AIDS often deliver this 

‘‘big disease’’ with diagnosis. We need to do whatever we can, learn 

all that is possible, and educate others so that no one is ever deserted. 

Thank you so much for allowing me to speak today. I appreciate 

it. 

[The prepared statement of Ms. Reilly follows:]

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The CHAIRMAN. Thank you very much, Jeanine. 

We have been joined by Senator Jim Talent of Missouri. Do you 

have a statement you would like to make, Senator? 

OPENING STATEMENT OF SENATOR JAMES M. TALENT 

Senator TALENT. Yes, very briefly, Mr. Chairman. I want to 

thank you for this hearing. We have 10,000 reported cases of AIDS 

in Missouri, and a number of those folks are elders. We have contacted a gentleman named Jay Pulford. Jay is well-known within 

the community back in St. Louis because he has spent the last 18 

years dedicating his time to helping educate people of all ages 

about the disease. What he said echoed what Ms. Reilly was saying. He says: No fear or stigma; we need to be honest and open and 

talk about this problem no differently than we would talk about 

cancer or diabetes; if you do not talk about it, you cannot fix the 

problem. 

I can readily understand why that message is especially important for seniors, for whom the whole subject of sexual relations is 

just more difficult for them to discuss and for others to discuss with 

them, and who I think would be more liable to being quiet or not 

seeking the treatment they need because of a fear of stigma and 

less aware of the dangers and the importance of safe sex at their 

age. 

So I think it is important that you are having this hearing. I 

have a markup in Armed Services that I have got to go to because 

we are going to put the bill out, but I have questions for the record. 

I hope that these witnesses have addressed or will address their 

views about concrete measures we might take to help generate 

more education, more understanding within that community, and 

perhaps working through nursing homes or other institutional providers is one way to go. But this is a much bigger danger than I 

think most people are aware of, and I know that is why you are 

having the hearing, and I want to congratulate you on doing that. 

I hope we can come out of this with some concrete ideas just to 

begin by letting people know that this is an issue and letting seniors know it is OK for them to consider an issue and to take the 

necessary steps for prevention or treatment. 

The CHAIRMAN. Senator, we will put your questions in the 

record. But, Ms. Reilly, if you had to answer Senator Talent, what 

two or three things would you tell the Federal Government to do 

to help get the word out, get the help there to stem the growth of 

this among seniors? 

Ms. REILLY. I have always wanted to be able to tell the Federal 

Government what to do, so this is great. [Laughter.] 

The CHAIRMAN. We have all had that impulse. Now is your time. 

Senator TALENT. I wish you better luck than we have had. 

Ms. REILLY. I believe that there is not enough simple literature 

that is geared for the older person. It is geared for our kids. It is 

geared for young adults. 

The CHAIRMAN. Where would you put that, in the nursing home? 

Ms. REILLY. I would put it in nursing homes. I would put it in 

senior citizen housing in our towns. I would put it in churches, if 

they would allow us to, and in the senior citizens organizations 

that we have in all the local towns across America. 

23

The CHAIRMAN. How about distributing it through Meals on 

Wheels and things like that where we already have a network in 

place? 

Ms. REILLY. AARP. There are ways to do it. 

Senator TALENT. The chairman and I know because we visit, as 

you often do—if you want to talk to a lot of seniors or visit with 

them about any senior subject, a subject affecting them, the lunch 

programs——

The CHAIRMAN. Fabulous. It would be a great distribution network. 

Ms. REILLY. Yes. 

Senator TALENT. It would be a great way to reach them. 

Ms. REILLY. I would also suggest getting other seniors to talk 

about the issue of sexual activity, because except for my parents, 

senior citizens continue to be sexually active. [Laughter.] 

They don’t turn off their humanity and their sexuality just because they get older. So we need to be addressing them, and this 

is a peer conversation in our culture. We do not easily talk 

intergenerationally about sexual issues openly, but we will with 

our peers. I think that that is an important place to begin to reach 

out to all the areas where senior citizens gather. 

The CHAIRMAN. Very helpful. Thank you, Ms. Reilly. 

Ms. REILLY. You are very welcome. Thank you. 

The CHAIRMAN. Shirley, you look great. 

Ms. Royster. Thank you. 

The CHAIRMAN. We are anxious to hear from you, what are your 

experiences and how you are coping. 

STATEMENT OF SHIRLEY ROYSTER, AGE 57, LIVING WITH 

HIV/AIDS, BOSTON, MA 

Ms. ROYSTER. I feel great, I am wonderful, and I am doing great. 

The CHAIRMAN. Well, we would not have you here if you weren’t 

wonderful. [Laughter.] 

You obviously are. 

Ms. ROYSTER. Thank you. My reputation precedes me, I see. 

I am a person living with HIV/AIDS. I have been diagnosed with 

AIDS in 1996, but I have been diagnosed with HIV since 1985. 

Now, I didn’t have any symptoms when I was diagnosed. None. 

The only reason I went to go get tested was because I was getting 

ready to get into a very special relationship, and I knew I had risky 

behaviors, and I wanted to keep that person safe. Plus my friends 

were dying around me. A lot of people were dying in 1985. So I 

went and got tested. I had two little girls at home, and I didn’t 

know what I was going to do. As a matter of fact, my doctor said 

to me I should not come back to her office because she did not have 

any information for me and she did not know what I should be 

doing. 

The CHAIRMAN. This was in 1985? 

Ms. ROYSTER. In 1985. She told me——

The CHAIRMAN. Do you hear that today, or has it changed? 

Ms. ROYSTER. It has changed today. She told me to get my affairs 

in order. So that was then. This is now. Twenty years later, I stand 

before you or sit before you very healthy. I have had no major illnesses, but I do have a lot of concerns. One of my concerns is as 

24

I age, I am going through menopause. Questions about menopause 

have not been answered. I don’t know if there has ever been any 

research on women who are aging and what happens to them with 

HIV. 

A big concern is menopause and HIV can have some of the same 

symptoms: the night sweats, the mood swings, all kinds of other 

concerns, different cancers. But there is really no information that 

my physician can even give me. She tells me she does not know. 

Being honest is probably the best thing that she can do for me 

right now, is just be honest. But we need that information. 

The CHAIRMAN. So your recommendation is we need research 

on——

Ms. ROYSTER. We need research. We have to have research because if we can’t—if we don’t know what effects HIV has on your 

body as you age, we can’t develop different medications, we can’t 

develop different strategies that are different from people who are 

younger living with this virus. 

The CHAIRMAN. Are you taking any medications now to help deal 

with HIV/AIDS? 

Ms. ROYSTER. I am taking medication for HIV, yes, hormone 

treatments. Now, I am not taking adequate hormone treatments 

because I have an unusual Pap smear, and they cannot tell me 

whether the unusual Pap smear is coming because of my HIV. It 

is a symptom of HIV, but they can’t tell whether that is it. So I 

can’t get my hormone treatment increased until they figure it out. 

So I have six months to go with my own personal summer right 

now and other issues I am experiencing. 

The CHAIRMAN. While you have not been able to get a lot of answers today, are you finding any physicians or resources that will 

help you to understand the answers to questions about what you 

are experiencing? 

Ms. ROYSTER. There is one program that just opened up in Rhode 

Island, I believe, one program that is going to address women and 

HIV and menopause. That is the only one that I know of. I think 

it is the only one in the country. I think it just opened up this 

year—as a matter of fact, last month. I think I gave them an interview. 

Now, you asked the question before of some of the things that 

we should be doing. Information is top. If people don’t know, people 

can’t address the issue. We have to have the information out there 

that this virus can affect anybody at any age. We have to do that. 

The second thing is I agree that we have to talk to our peers 

about their sexual practices or any other practices. Do you know 

that people over 50 are still doing drugs? It is not just sex. They 

are still doing drugs, and drugs are rampant in their community. 

We also have to develop some kind of support groups. The support groups that are needed in that age group are different from 

the support groups that are needed and have been going on for 

younger people. People like to see themselves, and so it is really 

uncomfortable for someone who is my age going into a room with 

women who are 20 and 30 years old to talk about issues. 

I have a kid that is 30 years old. As a matter of fact, she is 36. 

So I really wouldn’t be comfortable talking to——

The CHAIRMAN. You are too young for that. [Laughter.] 

25

Ms. ROYSTER. Thank you. Flattery will get your everywhere. 

The other thing I think we should do is we should talk to the 

medical care providers. You know, I still go to my physician, and 

I have to tell her about my sexual activities. She is not going to 

ask me. I don’t think that—I don’t know if she thinks that I died 

from my waist down when I turned 40, but I don’t think she is 

really comfortable with that. So I have to tell her what I am doing 

and why I am doing it and when I am doing it, you know, whether 

she wants to hear it or not, because I really want her to give me 

some advice. If she does not have it right then, I trust that she is 

going to go get the information, or even if she comes and tells me 

she does not have it, but I want her to pay attention. I think that 

is one of the things that we have to also learn how to do and how 

we need to talk to our physicians, is that it is a partnership. Dealing with this virus is a partnership with the medical field. I think 

that seniors have not really been taught that. I think they just 

take what the physicians say at face value and not really ask questions. That education needs to happen because I think they have 

a lot of concerns, and they just don’t know how to ask. 

The last thing, I think, is resources. Now, in Massachusetts we 

have a program called New England AIDS and Education. Now, 

that program goes out and it trains physicians, it trains educators, 

it trains dentists, it trains different medical fields how to deal with 

people who have HIV. I think we need more of those types of programs. I don’t know whether you know it or not, but physicians 

usually think they know it all. Did you know that? 

The CHAIRMAN. I never noticed. [Laughter.] 

Ms. ROYSTER. So I think that when we are talking about educating the health providers, I think we need to have them to know 

that they still can learn and that this information is important. 

The CHAIRMAN. When you tell your doctor about your condition, 

you ask questions and they don’t know now, do they try to find 

out? 

Ms. ROYSTER. Yes, of course. Of course, and they will call me at 

home, too, because if they don’t I’m going to call them. I’m going 

to ask them why they haven’t responded to me. But, you know, this 

is me. That is not a given for everybody. So I think that we also 

have to—once a person finds out that they have tested positive, it 

is one of the most destructive kinds of information you can ever receive. First of all, you start to blame yourself. What did I do? 

The second thing you start thinking about is your family. Who 

am I going to tell? How am I going to tell them? Will I lose my 

community? Who will support me in this? 

It is a very scary, scary place to be, and that is why I think most 

people don’t tell. 

Senator TALENT. Ms. Royster, with the chairman’s permission, 

because they scheduled several committees at the same time in this 

body—I think they believe you can defeat the laws of physics and 

be in two places at one time. But when you are saying these things, 

it is my sense that these issues which are there for anybody who 

gets such a report are probably many times more difficult for seniors. 

Ms. ROYSTER. Many times. 

26

Senator TALENT. Because, you know, if you are in that age group, 

your friends, to report that to your friends, they probably have no 

idea whatsoever how to respond; whereas, a 25-year-old who is 

raised with the presence of this disease around them, has friends 

who have it, and it is bad enough for them. I mean, is that fair 

in your mind, that first statement? 

Ms. ROYSTER. It is fair. 

Senator TALENT. It is much more difficult——

Ms. ROYSTER. It is fair. How do you tell your grown kids that you 

have HIV? ‘‘Papa, are you gay?’’ ‘‘Nana, are you doing drugs?’’ I 

mean, you know, these are the kinds of things that your kids will 

ask you, and they will need to be answered. 

The CHAIRMAN. Shirley, when you were diagnosed, did you face 

social ostracism, how did you approach your friends, your community, your church, your circle of influence? How were you treated? 

Ms. ROYSTER. I have lost friends. People stopped talking to me. 

Even now, in the last two years, I lost a friend that I had for 15 

years because I told her I was HIV positive. She said to me—well, 

she stopped calling me, and she didn’t respond. So I went to her 

house, and I said, ‘‘I gave you some information. Why aren’t you 

responding to me?’’ She says, ‘‘Well, Shirley, I don’t want to think 

of you dying.’’ Well, she has never known me to be sick, you know, 

but that was her way of saying she couldn’t deal with it. I never 

had many of those instances. 

I used to work in a battered women’s shelter. I used to stay sick 

because the kids came in with different kinds of viruses. At some 

point I felt really bad because I wasn’t at that time strong enough 

to be out in the community. I knew that women who were in that 

shelter were putting themselves at risk, and I had information and 

I didn’t give it to them because I was afraid of losing my job. 

The CHAIRMAN. Have you found a way, as you have lived with 

this disease, to tell others about it in ways that keep your friends 

and keep a community of loved ones around you? 

Ms. ROYSTER. Yes. 

The CHAIRMAN. What would you say to a senior who has AIDS 

and hasn’t told anyone? What counsel would you give them? 

Ms. ROYSTER. Well, there was a program that I worked with for 

six years. It was called Positive Prevention—Positive Direction, 

sorry. What we did was we went out into the schools, we went out 

to the churches, we went out to anywhere that would have us to 

come in to tell our stories. 

Now, New England AIDS and Education is one of those programs 

that allow people who are infected to come along with them to educate physicians. The National Organization for People Over Fifty is 

also one of those organizations that will give a conference. There 

is a conference coming up in Florida that we will go down, and they 

will have people who are speaking to other seniors about living 

with this virus. 

My mission right now is to educate as many people as I can. To 

a senior, my first thing is to say this is not a disease that means 

that you are dead. This is not a disease that you can’t live with. 

The CHAIRMAN. Nor a disease that need drive your friends away. 

Ms. ROYSTER. Nor need to drive your friends away. 

The CHAIRMAN. But they need to know that, don’t they? 

27

Ms. ROYSTER. They very much need to know that, and I want to 

also say to you that most of the prevention funding has been cut 

in half. In half. I don’t see how we can go out to start preventing 

this virus if we can’t even have a program to go to educate anybody. It is just devastating. You can’t begin to educate people and 

keep them safe if they can’t get the information. 

I work in a program for the archdiocese in Fall River, MA. We 

go into the Catholic schools to educate those kids. Those kids come 

from very nice homes. There is not one time that one of those kids 

haven’t said to us, ‘‘We get drunk on weekends and pass out.’’ It 

is the most scariest thing you ever want to hear, 16, 17, 18, passing 

out drunk. They don’t even know what they are doing or who is 

doing something to them. We still don’t have enough funding to 

continue to do that kind of information dissemination. We just 

don’t have the funding. 

The CHAIRMAN. I think that is the clear message from the first 

two witnesses. We need information out there and understanding. 

Shirley, thank you. You are very courageous, and we so appreciate your willingness to come share your personal story about a 

growing and important issue. So we wish you well. Thank you so 

much. 

Ms. ROYSTER. I thank you for having me. 

[The prepared statement of Ms. Royster follows:]

28


23758.012
29

The CHAIRMAN. Thomas, my Oregon constituent. 

STATEMENT OF THOMAS BRUNER, EXECUTIVE DIRECTOR, 

CASCADE AIDS PROJECT, PORTLAND, OR 

Mr. BRUNER. Absolutely. Good to see you, sir. Thank you very 

much for having me here today, and in preparation for being here, 

I did a predictable thing. I started searching data bases. I called 

the Oregon Department of Human Services. I directed my staff to 

run all sorts of queries on our data and to come up with lots of 

stats and charts and percentages, and I ditched all of that to come 

here today to tell you stories about three people—three people that 

I know, three people that we help, and three people who to me exemplify some of the policy and funding and service delivery challenges that all of us face around HIV and seniors. 

The first person I want to tell you about is Jim, and I want to 

tell you about Jim because Jim, Senator, reminds me a little bit of 

you, except he is older. He is 61. Jim is a very articulate man. Jim 

is a very successful businessperson. He is not incredibly wealthy, 

but he is very successful by anybody’s standards. 

Jim was married for a long time, 30 years, and he had two kids. 

He worked hard, and his hard work was rewarded financially and 

with more responsibility as he climbed the corporate ladder. He 

was very engaged in his community and his church. Jim, however, 

underneath all of that, wrestled with depression off and on through 

his life, and in his 50’s, Jim hit a wall. He was diagnosed with 

major clinical depression. He spun out of control and went down, 

and down, and down, and he drank a lot, and had a few affairs, 

and even experimented with drugs, all of which resulted in him losing his wife. 

Finally, he pulled himself out of all that and has his life together. But Jim goes to the doctor, isn’t feeling well, gets tested, 

and has HIV. Never anywhere along the way, anywhere—at his 

church, among his peers, in the general community at large—never 

did Jim see or hear information or images targeted to him for his 

potential risk for HIV. 

So what is the lesson or the recommendation I have for the Federal Government, since you have asked, as a result of Jim? I applaud the Centers for Disease Control strategically investing the 

overwhelming majority of their resources where the disease is 

worst. However, I believe that you need to direct the Centers for 

Disease Control clearly to increase their programming targeting 

seniors at risk for HIV as well as seniors with HIV. 

Now, along with that you can only squeeze so much blood out of 

a turnip, and along with that direction need to come resources so 

that the CDC can do an adequate job of that. 

I also think that you need to direct all federally funded health 

centers serving seniors, whether they be through HHS or HUD or 

health clinics serving seniors, to provide HIV information to their 

clients, to train their staff on some of the very issues that we have 

talked about today, and to be able to show you how they are complying with that. 

I want to tell you now about Roberta. Roberta is 70 years old. 

She is a very stately woman. She is a widow. She has been a 

widow a long time. She lost her husband a long time ago to an acciVerDate 0ct 09 2002 11:19 Oct 07, 2005 Jkt 000000 PO 00000 Frm 00033 Fmt 6633 Sfmt 6633 H:\DOCS\23758.TXT SAGING1 PsN: JOYCE
30

dent. Roberta is a woman of great faith, is very active in her 

church. 

Roberta had two kids. One daughter got caught up in drugs, had 

a couple of kids, and died of AIDS. Roberta now at the age of 70 

is raising her daughter’s kids who are orphans because of AIDS. 

Now, the challenge is that I as a service provider with none of 

the Federal funding that I receive can help Roberta. I am not able 

to use Ryan White Care Act dollars to help Roberta or her kids because there is not a person with HIV living today in that family. 

So I am prohibited from using any of those Federal funds——

The CHAIRMAN. Did you say the children have HIV? 

Mr. BRUNER. No, they do not, but they are orphaned as a result 

of aids and being raised by their 70-year-old grandmother as a result of AIDS. There is no Federal funding that allows me in the 

Ryan White Care Act to help Roberta and her grandkids because 

there is not an HIV-positive person in the home. So I would like 

to see you direct HRSA to relax restrictions on using Ryan White 

Care Act dollars in order to be able to provide more services for 

seniors who are either caring for their adult children with HIV——

The CHAIRMAN. Or who have been collaterally victimized by 

AIDS. 

Mr. BRUNER. Absolutely, or raising their grandchildren who are 

orphaned because of HIV. 

The last person I want to tell you about is Andy. Andy is a wonderful guy. He is bombastic, he is gregarious, he never met a 

stranger, and he has got a laugh that would fill this room—loves 

life, loves people, very successful health care policy analyst. Andy 

lost his brother, his baby brother, to AIDS and later on was diagnosed with AIDS himself. 

At the age of 45, his health was declining rapidly, and his doctor 

told him what Shirley’s doctor told her: ‘‘Andy, you need to get your 

affairs in order.’’ Andy trusted the medical establishment, had seen 

his baby brother die of AIDS, thought the same would happen to 

him. So he cashed out his life insurance policy at 50 cents on the 

dollar. He sold his house. He sold his car. He liquidated his assets. 

He took advantage of that to go on the trip of his dreams, his one 

last excursion before he died. Then he took the remainder of his 

money and set up trusts for all his nieces and nephews so they 

could go to college. 

Well, now it is 12 years later, and Andy looks like Shirley. He 

is healthy, he is robust, and nowhere near death. He is also 59, and 

he is also impoverished. 

Now, Andy wants——

The CHAIRMAN. Does he take a particular drug regimen to control it? 

Mr. BRUNER. He does. He takes this triple combination. Andy 

wants to go back to work. He really wants to go back to work, and 

he is a man of tremendous skills and assets and talents. You would 

love to have him on your staff. I would love to have him on my 

staff. But there are two reasons that he does not. The main is he 

is absolutely petrified of losing his Medicaid because without it he 

does not have access to these life-saving medications. If he goes 

back to work and earns very much money, he will lose his MedVerDate 0ct 09 2002 11:19 Oct 07, 2005 Jkt 000000 PO 00000 Frm 00034 Fmt 6633 Sfmt 6633 H:\DOCS\23758.TXT SAGING1 PsN: JOYCE
31

icaid. He will never get a job that would pay enough to more than 

compensate for the loss of his health care. 

The CHAIRMAN. What are the monthly prescription costs to him—

or to Medicaid? 

Mr. BRUNER. The annual cost for his triple combination cocktail therapy is about $18,000. Just that. That is no lab work. That is 

no doctor visits. That is not other medication. That is no medical 

procedure or diagnostic test that ever has to be done. But he wants 

to go back to work, and I want him to go back to work. It will be 

more cost-effective for you and I as taxpayers for him to go back 

to work. But he is scared because he will lose his Medicaid and be 

worse off. 

So I want you to direct the Social Security Administration and 

HCFA to revise those regulations so that people with HIV who are 

disabled can go back to work and make a decent living while maintaining their access to Medicaid, even if on a sliding fee scale so 

that the more they make up to some maximum limit, they at least 

have the option to buy into their continued Medicaid coverage, because now——

The CHAIRMAN. If he feels good, Tom, and he can get a job maybe 

that has health care—but you are suggesting some scale that gets 

him to a point of security in terms of health care. 

Mr. BRUNER. That is right. 

The CHAIRMAN. So that he becomes a taxpaying citizen again. 

Mr. BRUNER. Absolutely, earning wages, paying taxes, hopefully 

privately insured. But if he does not get a job with health insurance, which he may not, I want to see him go back to work. But 

this fear keeps him from going back to work. 

Another thing I would like to ask you to consider doing is, you 

know, Senator, with Ryan White Care Act money, I can feed Andy, 

I can transport Andy, I can help pay Andy’s rent; if Andy got sick, 

I could provide him with a home health nurse. You know what I 

can’t do? I can’t help him get a job. I am prohibited from using any 

of those Ryan White Care Act dollars to do something that would 

help Andy need less Ryan White Care Act funded support in the 

future. 

The CHAIRMAN. Would HIV be considered a pre-existing condition that would disqualify him from private health care? 

Mr. BRUNER. It would in some cases. Now, if Andy got a job with 

Multnomah County, Portland State University——

The CHAIRMAN. It would not. 

Mr. BRUNER [continuing]. City of Portland, a large enough employer——

The CHAIRMAN [continuing]. Sector with health care it might. 

Mr. BRUNER. It might, which——

The CHAIRMAN. I mean, really, I think your point is—I had not 

thought of it until you raised it, but, I mean, in circumstances like 

that where he can’t get private care, there ought to be some allowance or provision made for people in this niche of health care need. 

Mr. BRUNER. Absolutely, until we accomplish broader health care 

reform, which would outlaw pre-existing conditions. 

The CHAIRMAN. OK. 

Mr. BRUNER. So those are my list of five things that I come today 

to encourage you to think about that would make an enormous difVerDate 0ct 09 2002 11:19 Oct 07, 2005 Jkt 000000 PO 00000 Frm 00035 Fmt 6633 Sfmt 6633 H:\DOCS\23758.TXT SAGING1 PsN: JOYCE
32

ference, I think, for people like Jim and like Roberta and like Andy 

and for people like Cascade AIDS Project working with those folks. 

[The prepared statement of Mr. Bruner follows:]

33


23758.013
34


23758.014
35


23758.015
36

The CHAIRMAN. Tom, I am proud of you, and appreciate your efforts to be here today. I know well the Cascade AIDS work that 

you do, and it is a tremendous good that you do. I appreciate it, 

and also Shirley and Jeanine. You know, these hearings in the Senate Committee on Aging, they do a couple of things. First, you have 

given us some great ideas that we can put in the form of amendments to the Ryan White reauthorization. But there are a lot of 

seniors who watch the activity of this committee and who may be 

watching you on C-SPAN, and I think many of them will get ideas 

for how best to deal with their circumstances and how best to 

spread the news that you have to be careful. You need to seek medical help, get tested, and the Federal Government needs to do more 

in terms of research, Shirley, and for menopausal women who deal 

with this and what it all means to them. 

So this hearing has been of value to me. If any of you have a concluding comment you want to make, Jeanine, do you have anything 

else you have heard or anything else you want to say? 

Ms. REILLY. I want to say that it is important for all of us as 

Americans to take care of our seniors because with any luck, all of 

us will be there. If we don’t look out for our elders at this point, 

it damages our cities and our States and our Nation. I thank you 

so much for focusing the Senate’s attention on this really important 

issue. 

The CHAIRMAN. Thank you. 

Shirley, any final thoughts? 

Ms. ROYSTER. I would also like to thank you. Thank you for inviting me. 

The CHAIRMAN. You are welcome. 

Ms. ROYSTER. Thank you for listening. I truly did not expect to 

be here this long. I did not expect to live 20 years after being diagnosed with HIV. I really didn’t. Every day that I live is special to 

me. It is really, really a gift from God. I believe that. 

But I also think that our mission, once we find out that we have 

HIV, is to tell somebody. Tell somebody. You know, you would be 

surprised at the people who come out of the woodwork that love 

you or that are willing to love you. This disease does not have to 

be something that will isolate people, although it can be. But there 

is love and families, and families can be resilient. I hope that my 

message today can let them know that this can happen. 

Thank you. 

The CHAIRMAN. Thank you, Shirley. 

Tom. 

Mr. BRUNER. Senator, today in this hearing is just one example, 

the most recent example, of the incredible leadership that you personally have provided to the Senate and to the country on the 

issues of HIV and AIDS. You have been an amazing advocate. You 

have been a tremendous asset. People have listened. They have 

stopped and rethought, they have reconsidered their views. They 

have been challenged to confront their biases and their stereotypes 

because of you and because of the role model that you have been, 

not just on aging issues but on an enormous array of HIV/AIDS 

issues. I hear it from my peers across the country in sister organizations to mine all the time. 

37

So if I could be so bold, I would like to thank you publicly on behalf of all of us out there for your extraordinary leadership. 

The CHAIRMAN. No thanks are required, Tom. I appreciate your 

kind words, and if you want to travel around, you can introduce me 

any time you want. 

Mr. BRUNER. All right. Thank you. 

The CHAIRMAN. All kidding aside, I appreciate the chance to 

work with you on this and many other issues. I appreciate each of 

you being here and our audience for listening, and the broader audience that may view this. I hope each will take this information 

and help to stem the spread of AIDS in persons 50 and older because it is a very serious condition. But there is information, there 

is research, there is work to be done so we all get to be seniors, 

and hopefully without AIDS. But if you have it, there is help. 

With that, we are adjourned. 

[Whereupon, at 4:21 p.m., the committee was adjourned.] 

(39)

A P P E N D I X 

PREPARED STATEMENT OF SENATOR HILLARY RODHAM CLINTON

I’d like to thank Senators Smith and Kohl for convening this hearing today to talk 

about HIV and its impact on baby boomers. 

I know that Senator Smith has long been a champion of HIV/AIDS issues in the 

Senate, and we’ve worked together to introduce the Early Treatment for HIV Act,

which gives states the option to provide Medicaid eligibility to low-income individuals living with HIV before they become disabled by AIDS. 

I’m pleased that we’re examining this issue in light of this year’s reauthorization 

of the Ryan White CARE Act, which provides funding for essential care, treatment 

and support services for people living with HIV/AIDS. 

In my state, we have a real need for the services funded through the CARE Act. 

New York has the highest number of AIDS cases in the country—more than 66,000 

individuals are living with this disease. 

While advances in therapy have resulted in people with AIDS living longer, 

healthier lives, it has also increased the demand for the care and support services 

provided through the CARE Act. And, as we will learn today, the seniors living with 

AIDS have a special need for CARE Act program. 

In addition to providing adequate funding for treatment and support services for 

people living with AIDS, we also need to focus on preventing transmission of HIV. 

In New York, over 8,000 people were newly diagnosed with HIV last year, more 

than any other state. And I believe that it is critical to improve our prevention messages among our over-50 population, and encourage them to discuss testing with 

their medical providers. 

In my state, we provide counseling about HIV and AIDS as a routine part of 

prenatal care, and I belive that we need to expand such counseling into more 

patient-provider encounters, including those that senior citizens have with their 

primary care physicians. 

Again, I’d like to thank Senator Smith and Senator Kohl for holding this hearing 

and reminding us that AIDS is a disease that affects all Americans, including our 

seniors.

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