[Senate Hearing 109-147]
[From the U.S. Government Publishing Office]



                                                        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


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                       SPECIAL COMMITTEE ON AGING

                     GORDON SMITH, Oregon, Chairman
RICHARD SHELBY, Alabama              HERB KOHL, Wisconsin
SUSAN COLLINS, Maine                 JAMES M. JEFFORDS, Vermont
JAMES M. TALENT, Missouri            RUSSELL D. FEINGOLD, Wisconsin
ELIZABETH DOLE, North Carolina       RON WYDEN, Oregon
MEL MARTINEZ, Florida                BLANCHE L. LINCOLN, Arkansas
LARRY E. CRAIG, Idaho                EVAN BAYH, Indiana
RICK SANTORUM, Pennsylvania          THOMAS R. CARPER, Delaware
CONRAD BURNS, Montana                BILL NELSON, Florida
LAMAR ALEXANDER, Tennessee           HILLARY RODHAM CLINTON, New York
JIM DEMINT, South Carolina
                    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)

  


                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 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 effectively 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 name-based 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 persons. 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 
one-fifth 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 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. 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 community-based 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.
    Our community planning programs try to target those 
highest-risk 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.
    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 
non-starter 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.
    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.
    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 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.]
    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.
    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?
    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:]
    [GRAPHIC] [TIFF OMITTED] T3758.012
    
    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 
accident. 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 Medicaid. 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 difference, 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:]

    [GRAPHIC] [TIFF OMITTED] T3758.013
    
    [GRAPHIC] [TIFF OMITTED] T3758.014
    
    [GRAPHIC] [TIFF OMITTED] T3758.015
    
    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.
    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.]

                            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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