[Senate Hearing 113-863]
[From the U.S. Government Publishing Office]
S. Hrg. 113-863
OLDER AMERICANS: THE CHANGING
FACE OF HIV/AIDS
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HEARING
BEFORE THE
SPECIAL COMMITTEE ON AGING
UNITED STATES SENATE
ONE HUNDRED THIRTEENTH CONGRESS
FIRST SESSION
__________
WASHINGTON, DC
__________
SEPTEMBER 18, 2013
__________
Serial No. 113-9
Printed for the use of the Special Committee on Aging
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SPECIAL COMMITTEE ON AGING
BILL NELSON, Florida, Chairman
RON WYDEN, Oregon SUSAN M. COLLINS, Maine
ROBERT P. CASEY JR, Pennsylvania BOB CORKER, Tennessee
CLAIRE McCASKILL, Missouri ORRIN HATCH, Utah
SHELDON WHITEHOUSE, Rhode Island MARK KIRK, Illinois
KIRSTEN E. GILLIBRAND, New York DEAN HELLER, Nevada
JOE MANCHIN III, West Virginia JEFF FLAKE, Arizona
RICHARD BLUMENTHAL, Connecticut KELLY AYOTTE, New Hampshire
TAMMY BALDWIN, Wisconsin TIM SCOTT, Scott Carolina
JOE DONNELLY, Indiana TED CRUZ, Texas
ELIZABETH WARREN, Massachusetts
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Kim Lipsky, Majority Staff Director
Priscilla Hanley, Minority Staff Director
CONTENTS
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Page
Opening Statement of Ranking Member Susan M. Collins............. 1
Statement of Chairman Bill Nelson................................ 2
Statement of Senator Elizabeth Warren............................ 3
Statement of Senator Joe Donnelly................................ 4
Statement of Senator Tammy Baldwin............................... 4
PANEL OF WITNESSES
Ronald O. Valdiserri, MD, MPH, Deputy Assistant Secretary for
Health, Infectious Diseases and Office of HIV/AIDS and
Infectious Disease Policy, U.S. Department of Health and Human
Services....................................................... 6
Daniel Tietz, RN, JD, Executive Director, AIDS Community Research
Initiative of America (ACRIA).................................. 8
Carolyn L. Massey, CEO, Massmer Associates, LLC, and HIV/AIDS
Education Activist............................................. 10
Kenneth Miller, Executive Director, Down East AIDS Network....... 12
Rowena Johnston, Ph.D., Vice President and Director of Research,
amfAR, The Foundation for AIDS Research........................ 14
APPENDIX
Prepared Witness Statements
Ronald O. Valdiserri, MD, MPH, Deputy Assistant Secretary for
Health, Infectious Diseases and Office of HIV/AIDS and
Infectious Disease Policy, U.S. Department of Health and Human
Services....................................................... 34
Daniel Tietz, RN, JD, Executive Director, AIDS Community Research
Initiative of America (ACRIA).................................. 39
Carolyn L. Massey, CEO, Massmer Associates, LLC, and HIV/AIDS
Education Activist............................................. 40
Kenneth Miller, Executive Director, Down East AIDS Network....... 43
Rowena Johnston, Ph.D., Vice President and Director of Research,
amfAR, The Foundation for AIDS Research........................ 54
Additional Statements for the Record
The American Academy of HIV Medicine............................. 58
Michael Horberg, MD, MAS, FIDSA, Chair, HIV Medicine Association. 61
Jason Cianciotto, Director, Public Policy, Gay Men's Health
Crisis......................................................... 63
Shane Snowdon, Director of Health and Aging, Human Rights
Campaign Foundation............................................ 66
OLDER AMERICANS: THE CHANGING
FACE OF HIV/AIDS
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WEDNESDAY, SEPTEMBER 18, 2013
U.S. Senate,
Special Committee on Aging,
Washington, DC.
The Committee met, pursuant to notice, at 2:06 p.m., in
Room SD-562, Dirksen Senate Office Building, Hon. Bill Nelson,
Chairman of the Committee, presiding.
Present: Senators Nelson, Baldwin, Donnelly, Warren, and
Collins.
The Chairman. The meeting will come to order. We are
expecting Senator Collins momentarily.
Let me say before the hearing that the Ranking Member,
Senator Collins, and I have checked with the members of this
committee and we have found favorable replies to proceed
tomorrow to file the resolution for the committee budget for
the remainder of the 113th Congress. If there are any further
questions, I encourage members to contact our staff. But what
we will do is, either between the first and second vote
tomorrow, or if there is only one vote, immediately after that
vote, we will convene in the anteroom off of the Senate floor
and take care of that administrative matter.
I want to thank all of you for coming today. We have made
great gains in the national and international fight against
HIV/AIDS.
Senator Collins, I literally just started----
Senator Collins. Sorry, my fault.
The Chairman. [continuing]. And what I am going to do is,
since I will be introducing the panel members, I am going to
flip it to you first. I have made an administrative
announcement that tomorrow, we will convene off the floor after
the first vote to take care of the matter of the resolution for
the committee budget.
So, let me turn to you for your comments.
OPENING STATEMENT OF SENATOR SUSAN M. COLLINS
Senator Collins. Thank you, Mr. Chairman. I apologize,
first of all, for being late. I never like to be late for
anything, but much less your hearings.
I want to also thank you for holding this hearing to
examine the many challenges associated with an HIV/AIDS
population that is aging. Since today is National HIV/AIDS and
Aging Awareness Day, it is particularly appropriate that we
take this opportunity to focus attention on the issues facing
older Americans with regard to HIV prevention, testing, care,
and treatment.
The face of AIDS in America is aging. Thanks to major
scientific advances in anti-retroviral drugs, HIV is no longer
an early death sentence and people with HIV/AIDS can now live
near normal lifespans. By 2015, the average age of an HIV
patient will be 50. While that is a testament to just how
successful our research and treatment efforts have been, the
fact is that the increasing numbers of older adults being
diagnosed with HIV has also contributed to the graying of the
population. According to the CDC, people older than 50
accounted for 17 percent of new diagnoses in 2011, up from 13
percent in 2001. The success of HIV treatments combined with
the increasing number of newly diagnosed older individuals
means that people age 50 and older will account for the
majority of people living with HIV in our country by the year
2015.
At the beginning of the AIDS epidemic in the 1980s, people
who were diagnosed with HIV could expect to only live a year or
two after their diagnosis. Consequently, issues associated with
aging were simply not a major focus for people with HIV. But
new medications and treatments have changed all that. These
individuals now have to face the challenges of aging with HIV.
While living with HIV is not easy at any age, older
individuals face different issues than their younger
counterparts. HIV is still viewed by many people as a young
person's disease and older adults with HIV may encounter ageism
and additional stigma. This may make it even more difficult for
them to disclose their status to family and friends, limiting
their access to emotional and practical support and increasing
their sense of social isolation.
The CDC only recommends routine HIV testing up to age 64,
which prevents some older adults from learning their status.
This can delay a diagnosis, which, in turn, delays treatment
and reduces its effectiveness. It also increases the
opportunity for further HIV transmission.
While HIV patients are living longer, many appear to be
aging prematurely and are coming down with chronic conditions
related to aging, such as dementia and cardiovascular disease,
a decade sooner than their uninfected peers. Anti-retroviral
drug therapy can affect and perhaps even worsen these medical
conditions. Moreover, the decreased immune function that
naturally results from aging makes older persons more
vulnerable to a rapid progression from HIV infection to AIDS.
Before closing, I would like to welcome today Kenny Miller,
the Executive Director of the Down East AIDS Network in
Ellsworth, Maine. Kenny is here to talk about the special
challenges faced by older individuals with HIV/AIDS who live in
rural areas, and I am very much looking forward to his
testimony and the testimony of our entire panel.
Thank you, Mr. Chairman.
OPENING STATEMENT OF SENATOR BILL NELSON, CHAIRMAN
The Chairman. Thank you, Senator Collins.
So, today, we are going to look at AIDS and the aging. And
when you consider the fact that today, 30 percent of all AIDS
cases are age 50 or older, and in two years, 50 percent--half--
with HIV will be over the age of 50. You come into a State like
mine, Florida, that as a percent of the population has a higher
percent of elderly, it is even higher. Today, not 30 percent,
39 percent of those with the disease are over the age of 50.
And so this so-called graying of the population of AIDS comes
with the need to refocus our work on these new challenges.
Now, we want to reaffirm again that aging with HIV, some
people think that just because they are older, they are not
going to get HIV. Well, regardless of how you look at it, we
still have to find a cure for it, no matter what age you are.
So, our work for a cure should take into account the fact that
any such drug or vaccine will miss half an epidemic if it is
not tested and proven effective for the elderly population.
Now, out in the State of Oregon, there is this
extraordinary experiment right now successfully on a vaccine
that is eliminating HIV in monkeys. It is called SIV. It is
even more virulent in monkeys. And they now have a vaccine that
in this first test out in Oregon University has stopped it by
creating the vaccine that does something to the t-cell that
goes and attaches itself to the virus. So there is some real
promise. But that, needless to say, has to go then into a test
with humans, and as we get into a test with humans, is there
going to be a difference in what we are experimenting with on
how it will affect the young and how it will affect the old? In
fact, many conditions that often occur in the elderly, such as
diabetes or Alzheimer's, that has implications, then, when you
combine AIDS with that.
So, we are going to hear from our witnesses about how our
research dollars contribute to our understanding of how to
treat AIDS and we are going to do so today in the context of
those other diseases that often occur in the elderly.
Now, we want to hear also from the witnesses about
providing HIV services and support to seniors. Are our programs
that train providers and offer housing and assistance with
medication and the medication cost, are they prepared for an
aging population?
So, as we continue this battle against AIDS, now, we want
to refocus today's hearing on the aging population.
I want to thank our committee. I want to thank Senator
Collins for her contribution here. And I want to introduce our
panel.
Is there anybody on our committee that is compelled to make
a statement at this point?
Senator Warren. Could I make a statement?
The Chairman. Of course.
OPENING STATEMENT OF SENATOR ELIZABETH WARREN
Senator Warren. Mr. Chairman, I just want to take this--
because I am going to have another hearing at the same time and
may not be able to stay for all of this----
The Chairman. Yes, ma'am.
Senator Warren. [continuing]. So I do want to say, when you
are talking about the magnitude of the problem, in
Massachusetts, 52 percent of those who are HIV-positive are 50
or older, and 15 percent are 60 or older. This is an issue that
now is profoundly affecting an aging population and I want to
commend you and the Ranking Member for having a hearing on
this.
But I want to add on this, there really are moments of hope
in this battle. We have made tremendous progress in treating
HIV and are making exciting headway toward a cure. Just a few
months ago, researchers in Boston presented exciting clinical
results that two patients had undetectable HIV after bone
marrow transplants. And Fenway Health has been engaged in
important population studies, clinical research studies with
the LGBT community, since the very beginning of the HIV
epidemic and they have really helped bring forward our research
and our understanding of this issue.
I just want to make the point that progress is made
possible by smart investments in basic research and population
research by the government, by private industry, and by
nonprofit groups. And as our population living with HIV and at
risk for HIV ages, we need to make sure that we are gathering
and coordinating data on the long-term effects of HIV drugs, on
HIV drug interactions with medications used by an older
population, and on how best to treat older HIV patients who are
developing common comorbidity problems.
So I just want to thank you for having this hearing, for
getting us this focus, and I hope we will talk more about the
importance of continuing research in this area.
Thank you, Mr. Chairman.
The Chairman. So you are already over 50 percent today?
Senator Warren. Yes, we are. Yes, we are. This is an
urgent----
The Chairman. Over 50 percent of your HIV population is age
50 or over.
Senator Warren. [continuing]. That is right. This is an
urgent problem in Massachusetts. It is a coming problem for all
the rest of the country. And that is why it is so important
that we continue research in this area, Mr. Chairman.
The Chairman. Senator Donnelly.
OPENING STATEMENT OF SENATOR JOE DONNELLY
Senator Donnelly. Thank you, Mr. Chairman.
I would just like one minute to mention that my home State
is also the home State of Ryan White, who was such an American
hero, but also such an historic figure in this fight. And when
you head into the city of Indianapolis, you go down the street,
Meridian Street, and there is a huge cathedral there. It was
one of those days when I think American history changed, when,
after Ryan passed away, there was not only no seats to be
filled, but the parking lots were filled, as well, to honor
this young man and his fight. And so many people who are still
challenged with this, there is the Ryan White Program that
provides assistance to so many who do not have the financial
means to help themselves.
So I just wanted, on a day like today where we are trying
again to make sure we can beat this, that we had a real
American hero early on in the fight.
The Chairman. Senator Baldwin.
OPENING STATEMENT OF SENATOR TAMMY BALDWIN
Senator Baldwin. Now, I cannot pass on the opportunity to
actually make the opening statement live rather than submit
it----
[Laughter.]
The Chairman. Of course.
Senator Baldwin. [continuing]. Because I know some of you
will not be reading the record. I am guessing.
But, anyway, I want to thank you, Mr. Chairman and Ranking
Member Collins, for holding this really important hearing.
This topic holds real special meaning for me. I think it is
fair to say that the AIDS epidemic really shaped my early
career in public service and helped me focus squarely on what
became my goals of achieving quality, affordable health care
for all and achieving equality and equal rights for all.
It was in 1986 that I was first elected to public office,
the Dane County Board of Supervisors, and in my home county, it
was in that year that the first cases of HIV/AIDS were being
reported in my county and in the State of Wisconsin. Many of
the men who had been diagnosed in larger cities on the coast--
Boston, New York, Los Angeles, San Francisco--and at that time,
it was accurate to say we were only hearing about cases
involving men--they were coming home and they were coming home
at that point to die. And there was a tremendous amount of fear
and paranoia and sorrow in our community, and I would say that
it was not just fear of the epidemic, it was an epidemic of
fear and both needed to be grappled with.
At that time, society, government, and our health care
system was not responding adequately or appropriately to the
crisis. So little was known about the disease that we found
ourselves waging the war on two fronts, against a deadly virus
and against discrimination and fear.
Three decades later, I can honestly say that it has gotten
better. But the significant improvements raise important new
challenges, and so one of Wisconsin's AIDS providers, the AIDS
Network, recently shared with our office, quote, ``The HIV-
positive population that we serve is indeed growing and aging.
Over 50 percent of the patients and clients we serve are over
45 years old and our oldest is over 80 years old. We are seeing
the benefits of better treatment. That means services and care
must be available as the demographic change and our clients
age. We need to make sure that we have great medical and dental
care and that we are able to help with public benefits like
Medicare and that we provide mental health counseling and other
integrated services.''
So, though the landscape has changed, myriad challenges
remain and we cannot lose sight of eradicating the epidemic
once and for all, as you said, Mr. Chairman. Hearings like this
are a very important part of that effort, so thank you again
for holding and convening us today.
The Chairman. First, we are going to hear from Ronald
Valdiserri. Dr. Valdiserri is the Deputy Assistant Secretary
for Health, Infectious Diseases, and the Director of the Office
of HIV/AIDS and Infectious Disease Policy at HHS.
Next, we will hear from Daniel Tietz, who serves as the
Executive Director for the AIDS Community Research Initiative
of America. Mr. Tietz is heavily involved in his organization's
mission of training and educating older adults on HIV,
including several training sessions in Florida.
And then we will hear from Carolyn Massey, a lifelong HIV
activist.
Next, we will hear from Kenneth Miller, the Executive
Director of the Down East AIDS Network based in the State of
Maine.
And then we will hear from Rowena Johnston. Dr. Johnston
serves as Vice President and Director of Research at amfAR, The
Foundation for AIDS Research.
Welcome to the committee. If each of you could give us a
presentation of around five minutes apiece, your written
testimony will be entered as part of the committee's record.
Dr. Valdiserri, we will start with you and go right down
the line. Please.
STATEMENT OF RONALD O. VALDISERRI, M.D., M.P.H., DEPUTY
ASSISTANT SECRETARY FOR HEALTH, INFECTIOUS DISEASES, OFFICE OF
HIV/AIDS AND INFECTIOUS DISEASE POLICY, U.S. DEPARTMENT OF
HEALTH AND HUMAN SERVICES
Dr. Valdiserri. Thank you. Good afternoon, Chairman Nelson
and members of the Special Committee. I am pleased to be able
to offer testimony on the challenges of human immunodeficiency
virus infection among persons age 50 or older and how the
national HIV/AIDS strategy and other Federal initiatives are
helping to address their prevention, treatment, and care needs.
Now, we have heard both from Senators Collins and Nelson
about the aging of the AIDS epidemic in the United States, so I
will not repeat those statistics. I will share with you another
statistic from CDC that it is estimated that of the 50,000 or
so new HIV infections that occur every year in the United
States, 11 percent of new infections are occurring in older
Americans.
Prevention for this age group is complicated by a number of
factors. First, as is true for younger age groups, there are
large racial and ethnic disparities in HIV diagnoses among
persons who are age 50 or older. Between 2005 and 2008, the
rates of HIV diagnoses for older African Americans and
Hispanics and Latinos were respectively 13 and five times
higher than the rate for whites.
Second, although a large fraction of Americans remain
sexually active into their mid-60s and beyond, including people
living with HIV, many lack the awareness of the risks of
infection, take few precautions against HIV acquisition, and do
not discuss their sexual health with care providers.
Third, prevention for this age group may also be
complicated by established health risk behaviors, like alcohol
and substance use.
Now, treating persons aging with HIV presents its own
special challenges. Older persons are more likely to be
diagnosed late in the course of their HIV infection and have an
inferior, a less robust, immune response to anti-retroviral
therapy compared to younger people. This can be remediated in
part by fully implementing the routine HIV screening for all
persons between the ages of 15 and 65 years of age in accord
with the recent U.S. Preventive Services Task Force
recommendations.
Yet, even among those diagnosed and receiving HIV
treatment, persons age 50 or older may prematurely experience
chronic comorbidities common to advancing age, including
cardiovascular disease, infectious and non-infectious cancers,
liver disease, renal disease, and neuro-cognitive decline.
And, finally, because HIV disproportionately affects
sexual, racial, and ethnic minorities who often have fewer
economic and social resources, optimizing health outcomes for
those aging with HIV requires care services that address
housing instability, food insecurity, and social isolation.
Our progress toward achieving an AIDS-free generation in
the United States has been assisted by three recent
developments. First, the Affordable Care Act is expanding
access to quality care for millions of uninsured Americans,
some of whom were previously refused health care due to
preexisting conditions like HIV infection. The law also
includes new provisions to support patient-centered medical
homes, which are expected to increase care coordination,
improve health outcomes, and lower treatment costs.
Certainly, the National HIV/AIDS Strategy that was released
in 2010, which strives to reduce new HIV infections, improve
access to care, and reduce health-related disparities for all
Americans, including older Americans, promises to have a great
payoff in terms of improving health. Other parts of the Federal
Government and agencies are also addressing the needs of older
adults as they age to implement the goals of the National HIV/
AIDS Strategy. Much of the data that we have heard so far
presented comes from CDC, who collect and analyze HIV
surveillance data. They support routine HIV testing and
prevention services and educate practitioners on the HIV
prevention needs of persons who are 50 years and older.
I do also want to comment that the National Institutes of
Health has been very active in looking at the issue of HIV and
aging. They have commissioned a special work group which has
led to a number of new initiatives focused on studies
addressing many of the medical complications that you have
heard referred to, and I will not repeat them here.
Third, I want to let you know that there is a new Executive
Order that was released by the White House just in July of this
year which is attempting to come up with further responses to
improve the health outcomes of all Americans living with HIV,
including people who are over the age of 50.
We have a very shocking statistic in the United States in
that it is estimated that only 25 percent of the 1.1 million
Americans living with HIV have achieved virologic suppression.
That means that over 800,000 people in the United States,
including those over the age of 50, do not receive the full
benefits of current medical care that we have available in the
United States.
So, in conclusion, while we have made progress, more
remains to be done. We look forward to working with partners
across all segments of society to improve the health of older
Americans living with HIV.
This concludes my testimony. I appreciate the opportunity
to appear before you and will be happy to answer any questions
you might have.
The Chairman. Thank you.
Mr. Tietz.
STATEMENT OF DANIEL TIETZ, R.N., J.D., EXECUTIVE DIRECTOR, AIDS
COMMUNITY RESEARCH INITIATIVE OF AMERICA (ACRIA)
Mr. Tietz. Thank you, Chairman Nelson and Senator Collins
and members of the committee, for this opportunity. I greatly
appreciate it.
As the Chairman noted, ACRIA has delivered training and
technical assistance in Florida, most notably in Broward and
Dade Counties, where there is a significant number of older
adults with HIV and a host of providers struggling to serve
them.
I will not repeat some of the statistics that the Chairman
and the Ranking Member have already given, as well as were
repeated by Dr. Valdiserri, but I will note that folks with HIV
who are in their 50s and early 60s who make up the bulk of the
above-50 crowd have the same number of age-associated
comorbidities as an uninfected person ten to 20 years older.
These may include cardiovascular diseases, cancers,
osteoporosis, hypertension, and depression. Older adults with
HIV have a host of health and services needs that really
neither HIV nor aging services providers are fully prepared to
meet, and their significantly greater disease burden is often
complicated by social isolation and stigma.
Older adults with HIV have rates of depression, for
example, that are five times higher than their HIV-negative
peers. Depression is arguably the most reliable predictor of
medication non-adherence and is associated with poorer
treatment outcomes. Much of this depression is fueled by HIV
and LGBT-related stigma and social isolation. Studies,
including those done at ACRIA, have shown that almost 70
percent live alone and less than 15 percent have a partner or
spouse. With often distant families and fragile social
networks, they lack instrumental and emotional support.
Moreover, many of these older adults have disabling conditions
that limit employment and often live at or below the poverty
line.
In the context of the National HIV/AIDS Strategy and the
new HIV Care Continuum Initiative that Dr. Valdiserri
mentioned, I believe we will not reach the end of AIDS unless
we effectively address the barriers to routine HIV testing and
consistent engagement in HIV treatments among middle-aged and
older adults.
As with younger people, HIV disproportionately affects
older gay and bisexual men, especially men of color, and
African American and Latina women. These disparities are often
fueled by homophobia, HIV stigma, racism, and ageism. We need
targeted, evidence-based efforts, including cultural competency
training, to address these alarming disparities.
Therefore, I urge you and your colleagues in the Senate and
the House to promptly reauthorize the Older Americans Act and
to include people with LGBT and HIV persons as groups with
greatest social need. This would lead State and regional aging
services agencies to explicitly incorporate the unique needs of
these populations into their five-year planning efforts. The
National Resource Center on LGBT Aging, which is funded by the
Administration on Aging in a reauthorized OAA, would continue
to fight HIV and LGBT stigma and discrimination among
providers.
Likewise, I urge adequate support for the Health Resources
and Services Administration for targeted demonstration projects
and other funding for training HIV and aging services
providers.
I further urge adequate resources for the HIV initiatives
of the CDC. Research shows that most older adults, including
those with HIV, remain sexually active. One in every six new
diagnoses, as we heard, occurs in adults 50 and older, and as
Dr. Valdiserri noted, that is to be distinguished from folks
who are newly infected. So among that sort of 16, 17 percent
who are diagnosed, fully half of those older adults are found
to have AIDS. They are sick enough to be concurrently diagnosed
with AIDS. And, in short, they have had HIV for some time but
were never tested and treated. Older adults rarely seek HIV
testing and many, many providers are unaware that current CDC
guidelines recommend routine testing up to age 65. Therefore,
we need CDC-funded HIV primary and secondary prevention
campaigns for older adults.
For older adults living with HIV today, as Dr. Valdiserri
noted, ensuring the success of the Affordable Care Act is
really critical. This includes the expansion of Medicaid in all
States and robust HIV medication coverage as part of the
essential health benefits package as defined by CMS for both
the new insurance marketplaces as well as the expanded Medicaid
programs. Unfortunately, 40 percent of Americans with HIV live
in States that are not presently planning to expand Medicaid.
These include several States with the highest new infection
rates, lowest rates of overall insurance coverage, and worst
health disparities.
Today, half of all Americans with HIV rely on Medicaid to
cover their health services. The Kaiser Family Foundation notes
that people with HIV are about three times more likely to be
covered by Medicaid than the U.S. population overall. Almost 75
percent of Medicaid beneficiaries with HIV qualify because they
are both low income and permanently disabled, and nearly a
third are dually eligible for Medicaid and Medicare. As they
develop multiple chronic conditions at a relatively young age,
most will require long-term care.
In a related vein, older adults with HIV need the Ryan
White Care Act, as Senator Donnelly had noted earlier, to be
fully funded to meet current needs, or at the very least, at
the level requested by the President for fiscal year 2014. In
inflation-adjusted dollars, Ryan White has essentially been
flat for the last decade, and that is even as the number of
people with HIV grows and the need grows among those who are
living.
So Ryan White is vital for many reasons, not least because
the median age for older adults with HIV is 58, which means
that they are not eligible for Medicare in many instances or
other services from the Older Americans Act. Most older adults
with HIV rely on Ryan White funded programs, including the AIDS
Drug Assistance Program. Ryan White funded completion services,
such as transportation support and case management, are also
vital to ensure sustained engagement in care and treatment
success. With about half the States choosing not to expand
Medicaid, the Ryan White Program will remain vitally important
for essential services.
In sum, if we are to effect real improvements in the HIV
treatment cascade, particularly the very large gap between
those initially linked to care and those retained in care, we
will need to pay close attention to the intersection of the
Affordable Care Act and the Ryan White Program.
In addition, we must not only maintain but increase funding
for NIH-targeted research on HIV and aging. The NIH Office of
AIDS Research Special Working Group on HIV and Aging, which was
convened in April of 2011, was a unique gathering of scientific
experts from biomedical, clinical, and social science
disciplines tasked with identifying critical research areas to
better inform the treatment and care of this growing
population.
One of the four subgroups, which included ACRIA's Dr. Mark
Brennan-Ing, focused on societal infrastructure, mental health,
and substance use issues, and the caregiving challenges that
have been identified as critical to better treatment outcomes
for these older adults.
Specific recommendations include----
The Chairman. I need you to wrap up, Mr. Tietz.
Mr. Tietz. [continuing]. All right. Let me scoot right to
the end, then.
The last thing I might mention is that we really need the
FDA to look at multi-drug resistance for this population in
finding new treatments for folks with HIV who are aging.
Thank you for the opportunity.
The Chairman. Thank you.
Ms. Massey.
STATEMENT OF CAROLYN L. MASSEY, CHIEF EXECUTIVE OFFICER,
MASSMER ASSOCIATES, LLC, AND HIV/AIDS EDUCATION ACTIVIST
Ms. Massey. Chairman Nelson, Senator Collins, and the
distinguished members of the committee, thank you for the
opportunity to address the very important subject of HIV and
aging.
I am here to issue a clarion call, to give you the inside
story on HIV and aging and the real cost of continuing to
minimize the impact that HIV, left unchecked in aging adults,
will have on our country and aging citizens. My prayer is that
by sharing some of my personal experiences and those of people
who have died from HIV and AIDS or are currently living with
the disease, you might consider them as you determine how best
to meet the needs of more than 1.2 million persons who are
known to be living with this disease in our country today. I
say ``known to be'' because estimates are that approximately a
quarter of the people who are HIV-positive in the United States
right now do not know their HIV status.
We are fast approaching the point where truly 50 percent of
those that are living with this disease are at least 50 years
of age. This pivotal study, Research on Older Adults and HIV,
was conducted by the AIDS Community Research Initiative of
America years ago and it told us years ago that HIV and AIDS
has a major impact on the quality of life for older adults
living with the disease. I ask that you consider the economic
impact, the loss of life, loss of productivity, loss of tax
revenues, trauma to families and loved ones, that will only
grow if HIV in aging adults is left unchecked.
I was initially diagnosed with HIV in the fall of 1994, the
same year that my only brother died as a result of
complications associated with AIDS. His name was Theodore
Anthony Jackson, a budding young businessman having just opened
his third and what was to be a franchise of barber shops called
Tony's. He would be 55 years old today. Our country lost the
benefit of his gifts and of the contributions that he would
have made for more than 19 years.
Only months after his death, I was diagnosed. I was 38
years old then. During that time, the only drug widely
available and prescribed was AZT, and in Anthony's case, we
believe that it did him more harm than good. As our family
struggled emotionally with Anthony's rapid decline in his
physical health and mental state, we were traumatized yet
further by my diagnosis. I am convinced that only because I
moved my family to Philadelphia in 1996 and vigorously pursued
medical treatment there and ever since that I am alive today.
The sad fact is that many of the people who are aging with
HIV today do not know that less stigmatized environments and
more knowledgeable physicians are available to them. In fact,
many of the people who are living with HIV today still do not
know that there are lifesaving treatments and care available to
them. This is especially true of people known as baby boomers,
those of us who are over 50 years of age. The older a person
is, the less likely they are to be health literate about HIV,
their HIV risk levels, how to establish healthy relationships,
how to self-advocate, and how to access the life-saving
services that they need.
One of the things for which I am immensely grateful is
that, with your support, health information technology will be
used more. I believe that as the technology matures, you will
see that HIV is truly not particular about infecting a
particular group of people, but that there are more people
already infected than we think and that each of us is at higher
risk for infection than we ever imagined. In fact, if any of us
have had unprotected sex, we are at risk for HIV infection.
As you are aware, the field of geriatrics and gerontology
is a relatively new one, still emerging within the larger
medical community. I urge you and your Senate and House
colleagues to provide increased resources to study, better
understand, establish, and widely implement the best care and
treatment practices to address the needs of people who are
aging with HIV. Support people who want to study medicine and
work on these complex, difficult, and intersecting problems of
aging and HIV. The aging adults being diagnosed with and living
with HIV, if left unattended, is one of the next big health
challenges that we will face as a nation.
We have learned a lot over this 30-year journey with HIV in
the United States. Among the things that we have learned is
that most successful prevention interventions and approaches to
care are those that begin with and continue to meaningfully
involve the affected communities.
The Ryan White Care Act has provided a tremendous gift
through lessons learned in the creation of a continuum of care
that actually works. That continuum should be informing our
work going forward in order to undergird the health care reform
that is now underway.
Another lesson we have learned is that the approach to
ending HIV must involve many sectors and various disciplines
that must be--this must be an interwoven and integrated effort
that involves academic, scientific, political, at-risk
populations, and other community stakeholders. We must find
ways to effectively improve and measure the change and the
quality of life for persons who are living longer with HIV and
to begin to connect them, to the extent that they are able, to
more productive lives. Too often, in our zeal to solve one
problem, we create other challenges.
With improving care and services and wider access for all
people living with HIV, we can expect that some will be able to
return to work and will want to do so. Therefore, we need to
develop ways to help support them as they do that and ensure
that supports and approaches are realistic and age and
culturally appropriate. This improves [sic] working with
employers and industries to develop new ways to work and
developing more thoughtful outcome-driven benefit structures
that do not perpetuate poverty but support progress and hope.
Finally, I strongly support and urge that you not let our
mothers, fathers, and elders die simply because we refuse to
sensibly and effectively act. We have the means and wherewithal
to better serve older adults with and at risk for HIV and to
end this terrible epidemic, but only if we learn the lessons of
the past and commit the resources to get there.
Please, dear Senators, do not forget us.
The Chairman. Thank you.
Mr. Miller.
STATEMENT OF KENNETH MILLER, EXECUTIVE DIRECTOR, DOWN EAST AIDS
NETWORK
Mr. Miller. Good afternoon, Chairman Nelson, Senator
Collins, and distinguished members of the Senate Special
Committee on Aging. Let me start by saying that I am honored to
be here today.
I look at my fellow panelists and I see representatives
from the DHHS Office of HIV, ACRIA, a lifelong activist, and
amfAR, and then there is me, Kenny Miller, Executive Director
of Down East AIDS Network, a small rural HIV service
organization in Down East Maine with about four employees
providing case management services to about 55 to 66 people
living with HIV, around 57 percent of which are age 50 and up.
I am also proud to say that I was recently elected Vice Chair
of Maine's HIV Advisory Committee, which provides--advises the
Governor's cabinet, the legislature, and--the State
legislature, that is--and public and private organizations with
regards to HIV issues.
Maine is one of the greatest States in the nation, with
about 17.5 percent of the population age 65 and up. With about
43.1 persons per square mile, it is also one of the most rural.
And while information concerning population density may seem
out of place, it is important to note that people living with
HIV and the providers that serve them face a complex set of
challenges resulting from the rural nature of the State.
Rural patients, in general, face increased barriers to
care. These are exacerbated by health complications, stigma,
and the expertise of local providers. A number of studies
indicate that local health systems in rural areas lack the
knowledge and experience required to treat specialty conditions
like HIV and this affects patients' perceptions of providers'
capacity to help them manage HIV and is associated with
increased likelihood that a patient will not be taking anti-
retroviral medications.
Beyond knowledge, some studies also indicate that increased
levels of provider stigma and discrimination exist in rural
areas. Take a client of ours, we will call him Adam Lawrence.
His name has been changed for confidentiality reasons. Fifty-
five years old, Adam contracted HIV through the use of
injection drugs a number of years ago. When you talk to him,
you get a sense that there is some moderate psychological
disturbance there that could also be a sign of early
neurocognitive dysfunction.
Over the course of a year, Adam cycled from one doctor to
another seeking treatment for an open wound that just refused
to heal. And just as quickly as he entered into care, he was
ejected, labeled a difficult patient due to some of those
things related to his psychological issues, prone to outbursts,
a kind of narrative that he had created about the wound.
There was no overt provider stigma in this case. There
would not be, but it is difficult to imagine that his status
and his history with injection drugs did not play a role in
their decision to discharge him. Such stigma as seen in Adam's
case has a negative relationship to people's ability to receive
the care that they need.
It is further complicated by concerns over confidentiality.
As some of you may be able to attest to, in small towns,
everybody knows everybody else's business. So keeping your
status secret when you are seeking medical services in those
situations is rather difficult.
This suggests another issue felt particularly strongly in
rural areas and that is community stigma. Rural persons living
with HIV indicated more severe community stigma towards people
living with HIV than their urban counterparts did in some
studies. This is not particularly surprising. Many rural
communities remain hostile towards gay and bisexual males.
People who use injection drugs continue to be stigmatized
throughout the U.S. And in spite of ongoing attempts to turn
the narrative regarding HIV towards one of a medical issue as
opposed to a character flaw, in rural America, it is still
linked to these marginalized communities in many ways, these
marginalized and often looked down upon communities.
Such stigma raises another question as to whether or not
depression and isolation experienced by people living with HIV
throughout the U.S. due to such stigma is also felt more
sharply in these rural contexts, and as pointed out earlier,
depression is a serious adherence risk.
We see this in the case of Hayden Mitchellson, again, his
name changed for confidentiality reasons, in his late 40s.
Hayden was born and raised in rural Maine. A gay man, Hayden
suffered family and community rejection and eventually fled his
home town to build a new space in one of Maine's bustling
tourist communities. Very outgoing, very vocal about HIV
issues, he is nonetheless very protective of his status, an
isolation of a whole different sort. Burdened by his past and
his secret, Hayden sank into depression, self-medicated with
alcohol, and ended up bouncing from job to job until he wound
up on the streets, floating from couch to hotel to park bench.
Without stable housing, another important factor in adherence,
Hayden was unable to seek medical care for his HIV.
The last point, and most simple point, in some respects, is
one of geography, of distance and transportation. Lacking
adequate health providers, people living with HIV are often
forced to travel long distances to urban areas, and the
inconvenience incurred is enough to prevent many people from
seeking care.
These are just a few of the challenges faced by rural
populations. Others include housing, access to mental health
providers, and on and on. But the issue is not just challenges
faced by people with HIV in rural areas. It is people aging
with HIV in rural areas. There has been a lot written and said
about aging and HIV and HIV in rural contexts, but there
appears to be a dearth of information concerning the
intersection of the two as they relate to HIV.
I think it is a reasonable hypothesis that the challenges
posed by aging and living in a rural area amplify one another.
People aging with HIV in a rural environment face significantly
greater stigma, isolation, and barriers to care compared with
their younger counterparts--younger or urban counterparts.
Receipt of care is negatively affected by their functional and
neuro-cognitive decline, the adequacy of local providers,
provider stigma, and geographic distance. Community stigma is
exacerbated by ageism and functional and neuro-cognitive
decline articulate with the experience of stigma to lead to
greater levels of depression. The end result threatens a
patient's adherence to their HIV treatment regimen and,
consequently, their health.
Thank you, and I am happy to take any questions.
The Chairman. Thank you.
Dr. Johnston.
STATEMENT OF ROWENA JOHNSTON, PH.D., VICE PRESIDENT AND
DIRECTOR OF RESEARCH, amfAR, THE FOUNDATION FOR AIDS RESEARCH
Ms. Johnston. Chairman Nelson, Ranking Member Collins,
members of the Special Committee, thank you very much for
inviting amfAR to participate in today's hearing on Older
Americans: The Changing Face of HIV/AIDS. I am pleased to share
our views on what we see as the difficulties as well as the
opportunities of this growing challenge in the United States.
In the next few years, there are projected to be half-a-
million people living with HIV over the age of 50. Some of
these people will be people who have been living with HIV for
many years or even decades, and others will be people who are
newly infected, but they will all face the difficulties of
aging and of doing so with a serious and a potentially fatal
disease.
For many years, as was noted before, we never expected to
have to deal with HIV infection in older Americans. But anti-
retroviral therapy has dramatically lengthened the lives of
those living with the infection. However, that means that
increasing numbers of people are living with HIV who are older
than ever, and our challenge is that we do not know enough
about the biological causes and consequences of aging with HIV
infection or about the social burdens borne by those living
with HIV.
HIV and aging is at the intersection of several of the most
pressing health challenges that face Americans who are aging,
and these include cardiovascular disease, cancer, osteoporosis,
liver and kidney disease, hepatitis C, and neurological
diseases like dementia. People living with HIV face an
increased rate of all of those diseases and at a younger age
than those who do not have HIV.
And underlying all of these diseases is the aging of the
immune system itself. Older adults, even in the absence of HIV,
experience a reduction in the ability of stem cells to develop
into immune cells. They experience a shrinking of the thymus,
which is a key organ that generates new immune cells, a
decrease in the ability to respond to new infections, and an
increase in the production of hormones that lead to an immune
inflammation, which in turn perpetuates the cycle of the loss
of ability to respond to new infections.
Evidence from the HIV research field suggests that this
collection of immune phenomena occurs in both aging and in
normal HIV infection. That means older Americans living with
HIV are subject to immune inflammation on two fronts. Any
research that can shed light on the process of inflammation in
HIV disease will, by definition, benefit millions of Americans
who will face diseases associated with aging now and in the
future.
In addition, researchers currently believe that many of the
manifestations of this inflammation of the immune system pose a
significant barrier to our ability to cure HIV and, therefore,
a greater understanding of the fundamental cellular processes
underlying aging, such as inflammation, will help us to address
many, perhaps even most, of the diseases that take the lives of
older Americans living with or without HIV and may at the same
time help us to achieve one of the greatest medical challenges
that we face this century, namely, curing an infection that has
taken the lives of tens of millions of people around the world.
And I did note with interest the introductory comments
about the cases of HIV cure that have already taken in place,
in particular, the Boston patients, the research on our way to
finding a cure for HIV. I would also like to bring your
attention to a Mississippi child who was cured earlier this
year. And I am very proud to tell you that these are both
cases--pieces of research that were supported and funded by
amfAR. We understand, as you do, too, that curing HIV infection
is going to be critical to bringing an end to HIV in the United
States.
Robust support for a strong research agenda will be crucial
to understanding and addressing these challenges. Research has
resulted in drugs that are saving the lives of millions of HIV-
infected people around the world, but the fact is that many new
treatments for diseases such as cancer, heart disease,
hepatitis, and osteoporosis have also arisen from research
aimed at preventing, diagnosing, and treating HIV.
Protease inhibitors are being tested in the treatment of
cancers. Some cancers require treatment by transplantation and
the immune suppression that can lead to opportunistic
infection, such as cytomegalo virus and pneumocystis pneumonia
are treated using treatments that came out of AIDS research.
Protease inhibitors are also being tested in the treatment of
Alzheimer's disease and along with neucleocyte analogs, which
were also developed to treat HIV, are being used to treat
hepatitis C.
Biomedical research saves lives and it generates economic
benefits and it yields scientific insights that catalyze future
medical breakthroughs. And although the U.S. has long been
recognized as the world leader in biomedical research, stagnant
funding, which actually translates into funding reductions when
you take into account inflation, imperils the U.S. leadership
and jeopardizes future life-saving research advances.
Funding for health research at the National Institutes of
Health lost 22 percent in purchasing power in the decade from
2003 to 2012. The sequester which went into effect this year on
March 1 resulted in the inability to fund 700 research
projects. And this will inevitably delay--in some cases prevent
altogether--the exploration of potentially transformative new
approaches to understanding and treating the leading causes of
death and disability.
When we invest in HIV research, we are committing to
understanding and solving the health challenges faced by
millions of aging Americans. The benefits accruing from an
investment in AIDS research spread well beyond people who are
infected with HIV in ways that we might not initially predict,
but which have a track record of having improved the health of
millions of Americans.
amfAR strongly supports an increase in funding for the NIH
and research on HIV and aging, understanding that the knowledge
that we gain from that research has the potential to touch the
lives of all of us.
Thank you again for giving amfAR the opportunity to testify
on this important topic. I would be happy to answer any
questions you may have.
The Chairman. Thank you.
I am going to turn first to Senator Collins for her
questions.
Senator Collins. Thank you very much, Mr. Chairman. Very
gracious of you, as always.
Mr. Miller, I am obviously very familiar with the two
counties where you are providing case management services. One
of them, Washington County, is one of the most rural counties
in a State that is a rural State. Could you talk to us a little
bit more about the barriers that individuals with HIV/AIDS who
are living in very rural parts of Maine have in obtaining
access to the care and services they need.
Mr. Miller. Certainly. So, our service area covers Hancock
and Washington County, and as Senator Collins mentioned,
Washington County is one of the most rural counties in Maine
and also one of the most economically disadvantaged. So it
faces a lot of challenges both in terms of the economy as well
as geography in terms of its rurality.
Like most rural people living with HIV and other specialty
health conditions, people in rural areas face significant
barriers when accessing care. In Maine, the majority of HIV
care is provided by infectious disease doctors, of which there
are currently about eight HIV medical providers operating in
the State. And with a population of about 1,654 people living
with HIV, this amounts to about 236 high-needs patients per
provider, if all were seeking treatment.
Senator Collins. Are any of those in Washington County?
Mr. Miller. None of them are in Washington County. We do
have one in Ellsworth, in Hancock County, but he has about--he
works about two days a week, and, bless his heart, the patients
love him. The clients love him. But he is semi-retired. And
Ellsworth is about a two-hour drive one way, so four hours
roundtrip from Calais, the most distal part of Washington
County. We have one client, in particular, who lives on a
reservation up there in Washington County and has very little
income and is facing a four-hour roundtrip for about a 30-
minute visit with her doctor.
Lacking transportation of their own, lacking financial
security and a reliable support system to provide them with
transportation, it often leads to frequently missed or skipped
visits. We try and work with them around these things, so we
get some funding through Ryan White Part C administered by the
Regional Medical Center of Lubec in order to provide some
transportation assistance in the form of gas cards. It does not
cover everything. It does not cover an entire visit, but it
helps to defray the costs a bit.
We also maintain two offices. So we have one office in
Ellsworth and one in Machias, as well as an outreach office in
Calais to try and reach out to some of those people in more
distant areas, at least to provide case management services
through those means. And our case managers are willing and
frequently do conduct home visits, so they will go directly out
to people living in the more distant areas of the county there.
Senator Collins. Thank you.
Dr. Valdiserri, it was startling to me to learn that the
State of Maine has already reached the threshold where 50
percent of those living with HIV or AIDS, full-blown AIDS, are
already age 50 or older. And yet when I look at the messaging
that is done on AIDS, whether it is public announcements, PSA
announcements, it is targeted at young people. And when I look
at the CDC recommendation for testing, it is up to age 64. Do
we need to revisit those policies and our educational awareness
campaigns in light of the fact that the population is aging? I
was thinking of what Ms. Massey was saying about that very
issue.
Dr. Valdiserri. Certainly. Let me answer that question.
First, in terms of the testing, I would say, actually, that the
ruling by the U.S. Preventive Services Task Force this spring,
which is up to the age of 65, routine testing between the ages
of 15 and 65, was widely viewed in the AIDS community as a
tremendous step forward, because prior to that time, CDC since
2006 had the recommendations that you had in place.
The reality, though, is, as several of the panelists have
noted, nationally, about 20 percent of all infected individuals
are unaware of their diagnosis, and one of the reasons for
that--there are many reasons. One is stigma. But the other is
that many of these people are in health care and they are not
willing to talk to their providers about risk or the provider
is not comfortable talking to the patient about risk. And so
moving to routine testing--I would start out by saying, I
agree, it is not all the way up to 65, but it is a tremendous
step forward.
Also, as you likely know, in the Affordable Care Act, if
the U.S. Preventive Services Task Force has given a Grade A
recommendation to a clinical preventive service, and they did
do that when they recommended routine testing, it will be
covered without copay.
So, let me start by saying that is widely viewed as
movement forward. I think where we are still challenged is the
fact that too many health care providers do not know how to
talk to their clients and patients about sex, and they also
make an assumption that older Americans are not sexually
active. So, I do agree with you that we have to continue to
work with medical and nursing and other professional
organizations to get the word out.
Just briefly on the issue of public education campaigns, I
would say that, certainly, there is the need for more campaigns
that are specifically targeted to older Americans and that is
why having a day like today where we can come together and
recognize the special needs of older people with HIV is
extremely important. There are some examples of some very fine
targeted campaigns across the United States, but I would agree
with you, we need to do more.
Senator Collins. Thank you.
The Chairman. Senator Donnelly.
Senator Donnelly. Thank you, Mr. Chairman.
To Mr. Valdiserri, you have a long and storied name, your
family and relatives in Indiana, and we greatly appreciate
everything they have done.
I want to follow up with a question for you, which is this,
and to you and then to Dr. Johnston, and that is the status of
the research that is being done. We heard what our Chairman was
referring to and I was wondering about the path forward, how
you see that, when you see--you know, we are making such
progress, but when do you see the day when we can look and
say--and I am not asking for an exact date, but--although I am.
[Laughter.]
Senator Donnelly. But how do you see the status of research
right now?
Dr. Valdiserri. So, let me say that I am old enough to
remember when a former Secretary of Health at HHS made a
prediction, so I am not going to go there.
Senator Donnelly. Right.
Dr. Valdiserri. I think when you talk about research, and
you understand this, Senator, that is a huge, huge domain. I
mean, we talk about virus--Senator Nelson mentioned viral
research. We have continued research into drug treatments. We
have research into basic science, about, as Dr. Johnston said,
what is actually happening. How does the virus impact the aging
process?
You know, it is really hard to predict, but I will say that
in the last few years, there have been some really amazing
breakthroughs, and in my field, in the world of public health,
the randomized control trial that demonstrated unequivocally
that early treatment of HIV infection--we always knew that was
good for the individual person, but this study demonstrated
that early treatment of HIV infection actually helped to
prevent transmission to partners. And that is why so much now
in the field of public health, we are hearing great interest
around the issue of treatment as prevention. So I cannot
predict, but we are definitely making substantial progress and
we will keep making progress----
Senator Donnelly. Just a follow-up on that. You are coming
at it from a number of different directions. Who helps to
coordinate so that they do not stay in their stovepipes, that
they are talking to one another?
Dr. Valdiserri. Good idea. So, that is the job--in the
Federal Government, that is the job of the Office of AIDS
Research at NIH, which is an entity that spans all of the
Institutes and offices at NIH, and as a result of direction
from you and your colleagues, every year develop a strategy
with priorities that they are going to organize.
Now, as Mr. Tietz and others referred to, the Office of
AIDS Research also will--they have a Federal Advisory Committee
that will also identify important areas that need special
attention. So a lot of the newer studies that I just very, very
briefly referred to do come out of the OAR discussion on HIV
and aging. So, in the Federal Government, it is the Office of
AIDS Research.
Senator Donnelly. Ms. Massey, in terms of the effect of
HIV/AIDS on seniors, do you find that there are more
depression-related challenges, there are more psychological-
related challenges than other age groups, or is there any
difference in that? And, Mr. Tietz, if you would----
Ms. Massey. I will just respond by saying, for many people,
growing older is not always a good thing.
Senator Donnelly. Right.
Ms. Massey. So there are depression issues anyway,
particularly when you start talking about folks that are more
disproportionately affected by HIV and AIDS based on the data
we have now. You are talking about people that are poorer, with
less education, less health literate, that do not have as
strong of support networks around them. So, yes, you are going
to have that. And when you add the HIV and AIDS and the stigma
and the unsurety and lack of access and supports to that, yes,
there is more. There is a lot of it. And it really does impact
people wanting to know their status.
Senator Donnelly. Okay.
Ms. Massey. And then once they do, doing something about
it.
Mr. Tietz. Yes. The study that I cited, the ACRIA data is
consistent with others where several times, five times or so
the rate for similarly aged older adults without HIV. So
depression is pretty significant.
Senator Donnelly. Okay.
Mr. Tietz. And I think, you know, for some of the reasons
we mentioned--so thinking about some of the most affected
populations, as Ms. Massey just noted, and I think as Mr.
Miller noted, as well, so I think social isolation, stigma,
discrimination, and feeling like you could not disclose, so
there is nobody to talk to, if you will, except for, say, maybe
your provider, who is going to give you these days ten minutes,
maybe once every three months. So I think there are those
challenges about small community.
But I would say small community is small community
everywhere, right? So the community which you are living in New
York City may seem like a small community, too, and you may not
want to go to your church and tell those folks that you have
HIV. You may not want to tell your geographically or
emotionally distant relatives that you have HIV. So I think
that can play out a lot of places, and I think it has a real
impact in terms of adherence.
So depressed people do not take their meds, and they do not
take any of their meds. They have not saved it up just for the
anti-depressant that they do not like, but they do not take the
other ones, either.
Senator Donnelly. Thank you very much. Thank you, Mr.
Chairman.
The Chairman. Senator Baldwin.
Senator Baldwin. Thank you, Mr. Chairman.
We know in general that access to health care coverage has
a strong relation to accessing medication, accessing services.
And so I wanted to hone in on something, Dr. Valdiserri, that
you said at the end of your testimony, that only 27 percent of
Americans older than age 65 are able to suppress their viral
load. This is significantly less than the rates for infected
Americans between 44 and 64, and it is especially troubling
because Americans older than 65 have much greater access to
health care through Medicare. So I am wondering if you can give
us a sense of why this is happening and whether HHS is doing
anything to examine this issue more closely.
Dr. Valdiserri. Certainly. Let me start out by saying,
generally, just to state that across the board, across all age
groups, we have not yet as a nation achieved an optimal
response to addressing the epidemic, and that is the essence of
the concern about the so-called care cascade. So, across the
board, it is 25 percent.
Your point is well taken, though, that when you break that
down, and those data come from a CDC study and they look at
differences, they looked at gender, they looked at race,
ethnicity, they looked at age, and they did find some very
distinct differences.
The bottom line is, we do not know for certain, but I think
there is a strong indication of a couple of things in play.
Number one, the statistic that several of my colleagues
mentioned of late diagnosis, the fact that nearly half of all
older Americans, the first time they are diagnosed with HIV go
on to develop AIDS within a year, essentially means they have
been, as Mr. Tietz said, essentially means they have been
infected for years and not diagnosed. All the while, the virus
is damaging their immune system. So, probably late diagnosis.
It is probably also an issue related to, as we heard from
Dr. Johnston, the older immune system is not quite as nimble as
the younger immune system.
And I would say just a comment about--your last comment
about many of these, especially 65 and older are Medicare
eligible, I think this gets back to the need to educate health
care providers that older people can be infected with HIV.
Older people are sexually active. And older people, older
Americans need to be counseled about HIV infection and be
tested if they have not been tested.
Senator Baldwin. Mr. Tietz, I was also interested in
something you said at the very last moment of your testimony,
also, that I think I would love to hear you expand on a little
bit, and that is the resistance that can be developed to HIV
medications in the population over 50. And you suggest that the
FDA and the drug industry should do more to help address this
problem. I wonder if you could delve a little bit more deeply
into that topic. Are high drug costs a factor here? What action
do we need to be taking at the Federal level, in particular, to
address the resistance to medications that are effective in
other age groups?
Mr. Tietz. So, right now, we--thank you, Senator. I think,
right now, we have, essentially, six classes of HIV drugs on
the market, some very good new treatments for folks who are
newly diagnosed, particularly if they are younger and have an
HIV which appears on testing not to be resistant to much of
anything. So there are lots of options there.
But for folks who are much older, particularly those who
have aged into this, so they have had HIV for 15, 20, 25, 30
years, may have participated in early studies before we knew
better. We were giving people one drug at a time or two drugs
at a time and they promptly developed, then, resistance to
those classes of drugs or similar drugs and that means they
have run out of options. So there is sort of an unknown number.
Our guess is somewhere around ten percent--I do not know if Dr.
Valdiserri would agree, but somewhere around there, probably
cannot put together a fully suppressive regimen. So, they
cannot come up with a mix of different medications such that
they are ever undetectable in terms of viral load, and as a
result, are always in fear of, if you will, everything going to
hell quickly and their dying.
So, for those folks, what we really need is for industry
and the FDA to work together to have sort of multi-drug
combination trials, so having more than one investigational
agent at the same time with a background regimen in an effort
to get them to viral suppression. Thanks.
The Chairman. Let me describe a situation not only in
Florida, but in 19 other States, where the Governors and the
State legislatures have refused to expand Medicaid. Therefore,
if one has AIDS, they are not poor enough to be eligible for
Medicaid at a very low threshold in those States, but they are
not old enough for Medicare and they are uninsured. What do you
think? Please, Doctor.
Dr. Valdiserri. Well, what I think is it is wonderful that
we have a very important safety net program known as the Ryan
White Program that is the payer of last resort and was put into
place specifically to provide HIV care, services, to uninsured
and underinsured Americans. So I think it is very important to
recognize, and certainly the Department, my Department and
administration is on record as saying that the Ryan White
Program is a very important program, even as we enter into a
reformed health care environment.
So, I would begin by saying that, Senator Nelson, that we
do have that safety net program.
The Chairman. Well, that is a positive, but several of you
have testified about how AIDS and/or other maladies reinforce
each other. And so the Ryan White is going to directly affect
or try to help with AIDS, not all these other things.
Dr. Valdiserri. Well, if I might----
The Chairman. In other words, my questions make a point.
Dr. Valdiserri. [continuing]. Sure, and I do not want to
minimize that point. It is an excellent point. But I would say
that the Ryan White Program has also been a leader in showing
the medical establishment how to integrate a variety of
different services for people living with HIV, how to integrate
services for viral hepatitis, for mental health, for treating
opioid addiction, as well as all of the very critical social
needs that everyone you have heard express here. But I suspect
my fellow panelists want to comment on this, as well.
Mr. Tietz. Yes, if I may. I agree, Senator. I think there
is a big gap there. It is a big worry in the community in terms
of providing treatment for all those who need it and getting
them the services they need. Ryan White is, right now, about
$2.3 billion, I think, and if you look at the sort of numbers
of people with HIV and their needs, given what you pointed out,
the sort of comorbid conditions as the epidemic ages, versus
the Ryan White Program, it goes like this. I mean, we are not
keeping up here with what we need.
So I think that there is a real challenge there and that is
partially solved because of the Affordable Care Act, without a
doubt, greater access, and, in fact, the ability that I think
the Secretary's wise moving in terms of giving States the
ability to use their Ryan White resources to, if you will,
cover the deductibles and copays and, in fact, even the
premiums for the new exchanges, for the new marketplace, is a
very wise move.
But there is no doubting that the point you are making is
the right one, which is that there is going to be a gap in
there. There has always been a gap in there and that is not
likely to get solved, particularly in those States that are not
going to expand Medicaid.
The Chairman. For the record, hypertension, diabetes,
dementia, Alzheimer's, cancer, and hypercholesterolemia--that
is a long one.
Okay, now, Ms. Massey, tell me, in your AIDS activism, if I
recall, you reached out to the faith-based community. Tell me
about that.
Ms. Massey. Well, on a personal basis, I reached out to my
bishop and explained to him that--at the time, I was trying to
return to work. I was working at University of Maryland, and to
be honest, I was doing more of the church's work than I was the
University's, so I let the bishop know that I really had a
heart to work with HIV in women.
But the faith communities are ready to be engaged. There is
more work going on now in faith communities than there ever
was. I am lucky enough to co-chair the Places of Worship
Advisory Board for the District of Columbia and we have more
members at the table now than we have ever had. Wesley
Theological Seminary is there. The National Children's Center
is there. The large churches, the big churches. The Black
Leadership Council on Age is there. And these are folks that
are--some of them have been doing this work a long time. Others
are brand new to it. And so it is a ripe time for getting
people at the table. That is one of the gifts that God has
given me, is to be able to get people to the table. I truly
believe if the right folks are at the table, anything is
solvable. And so the faith community, we do a lot of good work
that is done and covered in programs like Ryan White, to be
honest.
The public health, they do a lot of good work. They are
talking--they are speaking German, we are speaking Chinese.
They keep a certain kind of records. We measure other things.
There has to be a way to culturally sensitize each one of us to
each other and find ways to communicate and to show benefit of
what we do, what they do, and ways to enhance both of them.
So, we are very lucky to have some conversations that
involve ecumenically communities of faith and we are very good
partners with the public health agencies here in the District
and in Baltimore, Maryland, as well. I was lucky enough to
chair the Ryan White Greater Baltimore Health Services Planning
Council. So we involve faith community there, too. It is just
continuing to have the right people at the table, the
conversation.
The Chairman. Dr. Valdiserri, you talked about the
President's Executive Order, that there are going to be
recommendations forthcoming. When?
Dr. Valdiserri. The Executive Order called for the
recommendations within a certain time period, and I believe
that the Office of National AIDS Policy is committed to having
those available in December. So, we are actually actively
working--and the ``we'' here is not just Department of Health
and Human Services, but other Federal partners. And we are also
soliciting input from outside of government about how we can
address some of these very critical gaps in the care continuum.
So, those are expected to be issued by the White House sometime
in December.
The Chairman. Will you send a copy to this committee?
Dr. Valdiserri. It would be my pleasure to do so.
The Chairman. Okay. Dr. Johnston, I talked about the
research on primates. From the initial look at this research,
this works in primates. That does not mean it is going to work
in humans. Tell us, in your professional opinion, what do you
think about this research?
Ms. Johnston. Thank you, Senator Nelson.
The Chairman. This is for vaccine.
Ms. Johnston. That is right. The research that you have
brought up is, indeed, very interesting. This was led by a
researcher by the name of Louis Picker, who works in Oregon,
and he has been developing a vaccine that is actually based on
another virus, interestingly enough. He has developed this
vaccine out of cytomegalo virus, which is a virus that can--it
is quite dangerous in AIDS patients, actually, or at least it
can be, which is something to keep in mind when we look at this
research.
But one of the features of cytomegalo virus is it is very
persistent, and this is, I think, the secret behind the success
of the vaccine that he has developed. Some of the challenges
the previous vaccine researchers have faced is that you can
generate an immune response--an immune response is what we want
when we are developing an AIDS vaccine--but it does not persist
for very long. And what he has done is he has used this virus
that does persist for a very long time and he has seen that it
works in monkeys, as you have mentioned. It works in about 50
percent of those monkeys.
This research is very interesting also from a couple of
other angles. Mostly when people think about a vaccine, they
think about a way to prevent HIV. And initially, he designed
this vaccine because he was hoping that this was going to be a
vaccine that would prevent HIV. What is interesting about this
vaccine is he actually gave it to monkeys who were already
infected with SIV, the very closely related virus, and this
vaccine was able to clear the virus out of about half of those
monkeys. And so what that, of course, introduces to us is the
notion that we might be able to use a vaccine to cure HIV if
this concept were to work in humans.
And, of course, it does need to be tested in humans. I
think we are probably a little ways away from that just yet. I
know the researchers I have spoken to about this very finding
are very interested in knowing why did it not work in the other
half of the monkeys. It is going to be critical for us to
understand that.
It is going to be critical for us to come up with a form of
cytomegalo virus that would be safe to give to humans because
it really can cause disease in patients who have AIDS.
And then let us be very hopeful and optimistic, as we are
at amfAR, that we are going to be able to find a cure for HIV.
We do believe that is going to be crucial to ending HIV and
AIDS. It is going to be a critical component to that.
And in addition to that research, of course, we are keeping
a close eye on all of the other research that is going on. We
are supporting a lot of research around a cure and we do
believe, to reiterate a point that I had been making, that if
there is the right investment made in HIV research, we really
do believe that we are going to be able to bring an end to AIDS
via, for example, a cure, in our lifetime.
The Chairman. Well, it would be the request of this
committee, because of the subject matter of this hearing, that
when we get to the point of testing a vaccine for AIDS cure,
that we particularly designate part of the clinical trial for
aging patients, as well, in case there is a difference with
regard to the vaccine, and we would appreciate if you would
share that with your colleagues.
Let me ask you all about when a person can get Social
Security Disability benefits, they encounter a 24-month waiting
period before Medicare coverage begins. Can anyone comment on
whether this waiting point is a significant issue for HIV?
Dr. Valdiserri. I regret that I do not know enough to be
able to respond to that question, but I am willing to go back
and get information and submit it to the committee.
The Chairman. Okay. There is no cap on out-of-pocket
expenses for Medicare beneficiaries. What support do you think
is available to those Medicare beneficiaries who can no longer
afford the expensive and lengthy treatment other than the Ryan
White that you mentioned?
Dr. Valdiserri. That, too, is a complicated issue in that
Ryan White, as you likely know, is the payer of last resort.
And so by legislation, the clients who are in the Ryan White
program, and actually, I just heard from the leader of that
program this morning that about 70 percent of all of the
current clients enrolled in Ryan White have some level of
health insurance. But the way that it works is that primary
insurance has to pay down first and then the Ryan White kicks
in.
I am not--in terms of Medicare, I would have to get more
details for you, but I know that--and again, I heard this this
morning. It just so happens the Presidential Advisory Council
on HIV and AIDS is meeting at the Department today and they are
talking about the Ryan White Care Act and the future of the
Ryan White Care Act, and one of the presentations at this
public meeting was from a member of the committee who is from
Massachusetts who was sharing essentially the experience in
Massachusetts, which essentially underwent health care reform
much earlier than other parts of the country.
The major point there is that even in a reformed health
care environment where Medicaid is expanded, they actually use
their Ryan White dollars to help, in some instances, to help
buy private insurance for clients. And I think, Daniel, you
were referring to that. Maybe you can provide a little more
detail about how that works in the real world.
Mr. Tietz. I am not sure that I can. I got that from Laura
Cheever.
Dr. Valdiserri. Oh, okay.
Mr. Tietz. But--so----
Dr. Valdiserri. Well, that is a good source.
Mr. Tietz. [continuing]. It is a good source. But, I think
that is right. So, I mean, one of the options here--I think you
are referring, Mr. Chairman, to the Medicare eligible over 65--
mostly 65 and older. If they are poor enough, of course,
particularly with Medicaid expansion, well, then they can
become dual eligible and that will cover a lot of costs,
although still worth noting, as Dr. Cheever at HRSA would point
out, that still leaves about 30 percent who are getting some
services--it could be transportation, it could be nutrition, it
could be some case management service--that neither Medicaid
nor Medicare will pay for, and then they turn to Ryan White to
fill in that gap.
The Chairman. Senator Warren.
Senator Warren. Thank you, Mr. Chairman.
I, again, apologize. I am trying to cover two hearings at
once. But I want to go back to the screening question. I know
that we started down the line on it, but there is something
else I would like to press about screenings, and that is when I
look at the information we have, that the risk of HIV is rising
for the older population, that a larger proportion of older
Americans, that our risk profile is changing, that those who
are 50 and older have the lowest use of condoms, rate of use of
condoms. Those who are 50 and older have the lowest rates of
screening for HIV. And that for those who are 50 and older, it
is harder to screen because of comorbidities, symptom
identification. So it is more difficult sometimes to catch it
simply by symptoms or other factors.
So, what I would like to do is I would like to start the
question by asking you, Mr. Tietz, could you just identify and
really push on the point for us about the importance of
screening and how screening older Americans for HIV would make
a difference.
Mr. Tietz. Yes. Thank you, Senator. I think, as Dr.
Valdiserri also noted earlier, the current recommendation, of
course, from the U.S. Preventive Services Task Force is up to
65 and CDC up to 64 for routine screening. Lots of use in what
routine means here. But the point would be that we should
encourage providers and patients alike to think about HIV
screening as getting your blood pressure done, as getting your
cholesterol checked. It just becomes routinized. It becomes
normal, that this is the thing we do. So there is a big need
for education here, both public and private provider.
We think that the--the CDC, I think, thinks that the bulk
of the above-50 new diagnoses and new infections and greatest
risk is really in the 50 to 65. So, yes, I personally would
like to see the recommendation go higher, and I think there are
some good economic data. CDC has to consider the cost of
everything they recommend. So, considering the cost, there are
some good data that suggest that HIV testing is cost effective
up to the low 70s. So, yes, I would like to see it go higher,
but, frankly, we are not doing very well with the 50 to 65, so
maybe we could just start with that.
Senator Warren. But, Mr. Tietz, if I can, just because I
want to be sure we get it on the record, just identify for us,
if we do the screening--you cannot do cost without talking
about the benefit----
Mr. Tietz. Yes.
Senator Warren. [continuing]. If we do the screening, what
are the benefits of the detection?
Mr. Tietz. Oh, sure.
Senator Warren. That is the part I would like to hear.
Mr. Tietz. Oh, well, you will find folks who are younger,
closer to the point at which they got infected. We all know
that treatment outcomes are much, much better the sooner you
find folks. The closer you get to treating them after their
infection, the more likely they are going to have a good
outcome.
We, as Dr. Valdiserri noted earlier, and I think Dr.
Johnston, as well, older folks have, you know, just in general,
an immune system that, for lack of a better way of putting it,
is wearing out. So--and it just does not respond as well. So
you will see that even though older adults tend to be better
about taking their meds, particularly above 65, the response is
not quite as good for that reason.
So, the sooner the better. I think the truth is with HIV,
the sooner the better with all.
Senator Warren. Okay. So we get better outcomes. Anything
you want to add to that, perhaps about transmission?
Mr. Tietz. Well, yes, of course.
Dr. Valdiserri. I was going to say that if he did not.
[Laughter.]
Senator Warren. All right. I think that was known as
leading the witness, Mr. Chairman.
[Laughter.]
Mr. Tietz. Right. Yes.
Senator Warren. Please.
Mr. Tietz. You are very good at leading the witness.
[Laughter.]
Mr. Tietz. So, yes. So, the study that Dr. Valdiserri noted
earlier, HDTN052, I think, 96 percent reduction in terms of
risk of transmission for someone who has an undetectable viral
load. So, the better we do at this cascade, at this nice
picture that Dr. Valdiserri gave us, the better we do on this
end, the low end here, the greater likelihood we get to the end
of AIDS by preventing that many more new cases.
Senator Warren. Okay. Good. So----
Dr. Valdiserri. And may I add one thing, Senator, that we
know from a variety of research studies--this is not just
specific to older Americans--but the vast majority of people,
when they find out they are infected with HIV, are very
motivated to not transmit that infection to partners. That is
aside from the treatment issue, which is tremendous in itself.
But that information is empowering and most people want to take
and will take steps to interrupt transmission.
Senator Warren. [continuing]. Okay. So, better treatment
outcomes and lower rates of transmission, substantially lower
rates of transmission.
So, Dr. Valdiserri, what are you doing to increase
screening among older Americans?
Dr. Valdiserri. Well, as I had mentioned when you were out
of the room, we actually think the U.S. Preventive Services
Task Force recommendation, ruling, was a tremendous advance
forward, because in conversations--frankly, in conversations
with large payers and large insurance systems, there was some
concern sometimes among medical directors about, well, the CDC
says we should be doing routine screening, but the U.S.
Preventive Services Task Force does not recommend it. So I
would start by saying--now, that just happened this spring, in
April. So that was a tremendous step forward.
I can also tell you, wearing another hat, still government
but not HHS, I spent four years at the Department of Veterans
Affairs and one of the major efforts that we undertook--I was
part of the team that led that--is that we got the legislation
changed across the entire VA system which required scripted
pre-test counseling and signature consent before any veteran
could be tested for HIV. And what that translated into, because
health care providers are busy, the HIV testing rate was, like,
ten percent across the entire VA system.
Now, certainly, we still want informed consent. We do not
want people tested without their knowledge. But we were able to
change the Federal law, change the regulation, change policies
in health care settings to verbal consent documented in the
chart, some basic information, and that rate has shot up and is
continuing to go up.
So what we need to do is get--also, as Daniel said, we need
to have providers and clients alike start thinking about the
HIV test like they think about cholesterol screening and not as
some kind of special test that just these high-risk people from
who knows where have to take, that everyone needs to take the
test.
Senator Warren. Good. So, let me just push on that just a
little bit. I understand the point about trying to get people
to change how they think about it. What I want to know is does
HHS have any programs in the works as you did at VA to try to
move toward that----
Dr. Valdiserri. Oh, absolutely----
Senator Warren. [continuing]. So we get better screening?
Dr. Valdiserri. Absolutely. I mean------
Senator Warren. I will give you a chance to showcase it.
Dr. Valdiserri. [continuing]. Sure. Absolutely. CDC has a
number of major public information and awareness campaigns that
are targeted to various populations about the importance of
early diagnosis, also trying to destigmatize testing, because
as we heard from Ms. Massey, that is still an issue. Many
people are still fearful about learning their status. So we
have those kinds of efforts underway.
And I think, also, a lot of work with professional
organizations. We also want to try to influence the care
providers to develop more of a culture of prevention in primary
care settings.
And then, finally, I would say the other really important
avenue and opportunity to increase HIV testing is through the
Community Health Centers. We are talking about, as you know, a
national system serving individuals, many of whom are at high
risk for or living with HIV and undiagnosed. So efforts to get
HIV testing into Community Health Centers where we currently do
not have testing are a very active part of what HHS is doing to
try to promote awareness.
Now, I do want to say that is just the first part of the
cascade. So, once the testing takes place, we need to make sure
we have systems in place to link people actively in care and to
meet their needs so that, you know, if they are depressed, if
they have unstable housing, if they cannot eat, all of these
things are going to impact their ability to stay in care. So we
have to work all the way down the cascade. But you are right.
It begins with diagnosis.
Senator Warren. Thank you, Mr. Chairman. Thank you for your
generosity on the time.
The Chairman. Thank you.
Senator Collins.
Senator Collins. Thank you, Mr. Chairman.
I have just one final question. Dr. Johnston, I am going to
direct it to you, but then ask our other witnesses if they have
any comment, as well. While HIV patients are living longer, as
I mentioned in my opening remarks, many people with the virus
appear to be aging prematurely and coming down with diseases
and conditions that are associated with people who are older
than they are. Has amfAR done any research on the relationship
between HIV and aging that might shed light on the cause of
this? Is it the result of the disease itself or the drugs or
some combination, or do we just not know?
Ms. Johnston. Thank you, Senator Collins, for that
question. amfAR is very interested in this issue. I think I
have probably demonstrated that a lot of the research that
amfAR supports pertains to finding a cure for HIV, and although
it is not necessarily expected, I think there really is a very
tight interlinking between the issues of aging with HIV and
curing HIV for this particular reason that they are both very
concerned with immune activation, and immune activation is at
the center of the challenges of aging with HIV.
I think we do have a very good sense that of all the
diseases that are associated with aging with HIV that occur at
a younger age in people with HIV, the ones that you have
listed, cardiovascular disease, cancer, dementia, these are at
least in part attributable to the increase in immune
activation, which is the increase in the activity of the immune
system exactly because the HIV is in the body. The HIV persists
in the body and, therefore, the immune system keeps trying to
fight off that infection and it never gets to rest from being
able to do that.
So, with this persistent immune inflammation, it actually
runs itself down. The immune system literally gets tired out
and is unable to function properly anymore. And this directly
contributes to this higher prevalence of these aging diseases
at younger ages in people with HIV.
And to the extent that we also think that this is a barrier
to curing HIV, a lot of our research is centrally focused on
understanding what it is that drives the immune system, how it
is that we can break that cycle of the immune system being in
constant overdrive that leaves people susceptible to these
diseases of aging.
And to be honest with you, there are also pieces of
evidence that suggest that the drugs, in some cases, do
contribute to this, too, in particular, protease inhibitors.
Unfortunately, protease inhibitors are probably the most
powerful drugs that we have to treat HIV. They are also those
that can cause--possibly cause the greatest level of bone
damage, for example, that could lead to osteoporosis, liver and
kidney damage, and some of these other diseases that we
associate with aging.
But to circle back to your original point, I think immune
inflammation is increasingly understood to really be central to
all of these issues of why can we not cure HIV and what is
happening in terms of people who are aging with HIV.
Senator Collins. Thank you very much.
Dr. Valdiserri----
Dr. Valdiserri. Yes, if I might add, in addition to the
virus itself and the treatments, host factors, including co-
infection, viruses like hepatitis C virus, which are known to
cause persistent liver damage that can develop into cirrhosis
and hepatocellular carcinoma.
This has not come up at all, but wearing a public health
hat, the issue of smoking among older Americans with HIV, there
have been some startling studies that have shown now--the study
was in Scandinavia, but in a country that has essentially open
access to treatment, very good retention and care, Denmark,
some researchers demonstrated that more years of life were lost
from cigarette smoking than from HIV.
So, I think, to answer your question, there are a lot of
factors at play here. I will tell you that the NIH does have a
number of studies. I cannot give you the exact number, but
there are a number of studies that are looking specifically at
what you questioned. What is the interaction of the virus and
how does the inflammation that Dr. Johnston referred to, the
persistent activation, for instance, how does that contribute
to cardiovascular disease? How does it contribute to neurologic
disease? So, there are studies underway looking at that
particular issue, typically within the context of an organ
system or a disease set.
Senator Collins. Thank you.
Mr. Tietz, you get the last word, I believe.
Mr. Tietz. Thank you, Senator Collins, and I would just add
with regard to the NIH, as was earlier mentioned, the Office of
AIDS Research, as a result of a White House Conference, a half-
day meeting on HIV and Aging in late 2010, the NIH Office of
AIDS Research put together that Working Group on HIV and Aging
in early 2011 and we have referred to the recommendations from
that.
I think, given Senator Donnelly's earlier question about
stovepiping, almost one of the greatest benefits of that effort
that is ongoing is that it is across the NIH. It is across all
the Institutes, you know, Aging, NIMH, NIDA. So, folks are
looking in a very sort of multidisciplinary way across the
Institutes because aging, in fact, so much of it is across
organ systems, it is across--there are a whole lot of needs
there. And so I think that is particularly valuable in terms of
the thinking about this going forward.
Senator Collins. Thank you.
Thank you, Mr. Chairman, for an excellent hearing.
The Chairman. Thank you, Senator Collins.
And on that note, at the end of October, NIH will be having
a two-day conference on all of its research Institutes, the
ones that you just talked about the stovepiping, to look at
aging, the end of October, two-day conference.
On that note, it has been an excellent hearing. Thank you.
The meeting is adjourned.
[Whereupon, at 3:52 p.m., the committee was adjourned.]
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APPENDIX
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Prepared Witness Statements
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[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Prepared Statement of Daniel Tietz, Executive Director, AIDS Community
Research Initiative of America (ACRIA)
Chairman Nelson, Senator Collins and distinguished Members of the
Committee, on behalf of my colleagues at ACRIA, I thank you for holding
this hearing. ACRIA has long conducted and participated in research on
older adults with HIV in the U.S. and abroad. We have also delivered
training, technical assistance and capacity building services to HIV
and senior services providers across the U.S., including in Miami/Dade
and Broward counties in Florida. I am pleased for the opportunity to
join you.
From the epidemic's start, most people diagnosed with AIDS faced
death within a few years, if not a few months. With the effective
antiretroviral treatments available since the mid-1990s, HIV infection
has become a manageable chronic illness, best demonstrated by the
``graying'' of the epidemic. The CDC predicts that half of all
Americans diagnosed with HIV will be age 50 or older by 2015. That
proportion will rise to more than 70% by 2020.
In 2000, a 20 year old infected with HIV could, on average, expect
to live to age 36. Today, that same 20 year old can expect to live to
age 71. This extraordinary success is a result of the remarkable
commitment of scientists, clinicians, and activists, and the
investments made by the American people. But that success has also
brought new and ever-increasing prevention and care challenges for
those aging with HIV.
People with HIV who are in their 50s and early 60s have the same
number of age-associated comorbidities as an uninfected person 10-20
years older. These may include cardiovascular disease, cancers,
osteoporosis, hypertension, and depression. Older adults with HIV have
a host of health and services needs that neither HIV nor aging services
providers are fully prepared to meet. And their significantly greater
disease burden is often complicated by social isolation and stigma.
Older adults with HIV have rates of depression that are five times
higher than their HIV-negative peers. Depression is arguably the most
reliable predictor of medication non-adherence and is associated with
poorer treatment outcomes. Much of this depression is fueled by HIV-
and LGBT-related stigma and social isolation. Studies, including
ACRIA's research, show that almost 70% live alone and less than 15%
have a partner or spouse. With often distant families and fragile
social networks, they lack instrumental and emotional support.
Moreover, many of these older adults have disabling conditions that
limit employment and often live at, or below, the poverty line.
In the context of the National HIV/AIDS Strategy, and the new HIV
Continuum of Care Initiative announced by the White House in July, I
believe we won't reach the end of AIDS unless we effectively address
the barriers to routine HIV testing and consistent engagement in HIV
treatment among middle-aged and older adults. As with younger people,
HIV disproportionately affects older gay and bisexual men, especially
men of color, and African-American and Latino women. These disparities
are fueled by homophobia, HIV stigma, racism and ageism. We need
targeted, evidence-based efforts, including cultural competency
training, to address these alarming disparities.
Therefore, I urge you and your colleagues in the Senate and the
House to promptly reauthorize the Older Americans Act (OAA) and to
include people with HIV and LGBT persons as groups with ``greatest
social need.'' This would lead state and regional aging services
agencies to explicitly incorporate the unique needs of these
populations into their five-year planning efforts. The National
Resource Center on LGBT Aging, which is funded by the Administration on
Aging in a reauthorized OAA, would continue to fight HIV and LGBT
stigma and discrimination among providers. Likewise, I urge adequate
support for the Health Resources and Services Administration for
targeted demonstration projects and other funding for training HIV and
aging services providers.
I further urge adequate resources for the HIV initiatives of the
CDC. Research shows that most older adults, including those with HIV,
remain sexually active. One in every six new HIV diagnoses occurs in
adults 50 and older. And fully half of older adults first diagnosed
with HIV above age 50 are sick enough to be concurrently diagnosed with
AIDS. In other words, they have had HIV for some time but were never
tested and treated. Older adults rarely seek HIV testing, and many
providers are unaware that current CDC guidelines recommend routine HIV
testing up to age 65. Therefore, we need CDC-funded HIV primary and
secondary prevention campaigns for older adults.
For older adults living with HIV today, ensuring the success of the
Affordable Care Act is critical. This includes the expansion of
Medicaid in all states and robust HIV medication coverage as part of
the Essential Health Benefits packages as defined by the Centers for
Medicare and Medicaid Services_for both the new health insurance
marketplaces and expanded Medicaid programs. Unfortunately, about 40%
of Americans with HIV live in states that are not presently planning to
expand Medicaid. These include several states with the highest new HIV
infection rates, lowest rates of overall insurance coverage, and worst
health disparities. Today, half of all Americans with HIV rely on
Medicaid to cover their health services. The Kaiser Family Foundation
notes that people with HIV are about three times more likely to be
covered by Medicaid than the U.S. population overall. Almost 75% of
Medicaid beneficiaries with HIV qualify because they are both low-
income and permanently disabled. And nearly a third are dually-eligible
for Medicaid and Medicare. As they develop multiple chronic conditions
at a relatively young age, most will require long-term care.
In a related vein, older adults with HIV need the Ryan White CARE
Act to be fully funded to meet current needs or, at the very least, to
the level requested by the President in his FY14 budget. In inflation-
adjusted dollars Ryan White has been essentially flat-funded for the
last decade, even as the number of people with HIV continues to grow.
Ryan White is vital for many reasons, not least because the median age
for older adults with HIV is 58, meaning many are not eligible for
Medicare or other services funded through the Older Americans Act. Most
older adults with HIV rely on Ryan White-funded programs, including the
AIDS Drug Assistance Program. Ryan White-funded completion services,
such as transportation support and case management, are also vital to
ensure sustained engagement in care and treatment success. With about
half the states choosing not to expand Medicaid, the Ryan White program
will remain vitally important for essential services.
In sum, if we are to effect real improvements in the HIV treatment
cascade, particularly the very large gap between those initially linked
to care and those retained in care, we will need to pay close attention
to the intersection of the Affordable Care Act and the Ryan White
program.
In addition, we must not only maintain, but increase funding for
NIH-targeted research on HIV and aging. The NIH Office of AIDS Research
Special Working Group on HIV and Aging, convened in April 2011, was a
unique gathering of scientific experts from bio-medical, clinical, and
social science disciplines tasked with identifying critical research
areas to better inform the treatment and care of this growing
population. One of the four subgroups, which included ACRIA's Dr. Mark
Brennan-Ing, focused on societal infrastructure, mental health and
substance use issues, and the care giving challenges that have been
identified as critical to better treatment outcomes for these older
adults. Specific recommendations included prioritizing research into
co-morbidity management, behavioral health needs, and caregiving social
support resources. The program announcements issued by NIH in April
2012 were sponsored by seven NIH institutes in recognition of the
complex nature of aging with HIV and the multidisciplinary expertise
necessary for relevant research. As will be further discussed by my
amfAR colleague, Dr. Rowena Johnston, HIV research has and will
continue to inform our understanding of other diseases, including age-
related diseases.
Similarly, older adults with HIV need the FDA to support and
encourage pharmaceutical companies to conduct combination drug trials
for people with resistance to most HIV medications. A significant
proportion of individuals with such resistance are above age 50. We
also need the FDA and industry to examine the impact of long-term
antiretroviral use in an older adult population.
Lastly, it is our hope that HHS will soon develop formal guidelines
for providers treating older adults with HIV. Last year, ACRIA, the
American Academy of HIV Medicine, and the American Geriatrics Society
issued a report entitled The HIV and Aging Consensus Project:
Recommended Treatment Strategies for Clinicians Managing Older Patients
with HIV (http://www.aahivm.org/Upload_Module/upload/HIV%20and%20Aging/
Aging%20report%20working%20document%20FINAL%2012.1.pdf). These
treatment strategies were developed by an expert national panel, which
included ACRIA's Dr. Stephen Karpiak, and could serve as a starting
point for formal guidance from HHS.
Again, I greatly appreciate this opportunity to speak on the
subject of HIV and aging. I'm happy to answer any questions.
__________
Prepared Statement of Carolyn L. Massey, CEO, Massmer Associates, LLC,
and HIV/AIDS Education Activist
Chairman Nelson, Senator Collins and the distinguished Members of
the Committee, thank you for the opportunity to address the very
important subject of HIV and aging.
I am here to issue a clarion call, to give you the ``inside story''
on HIV and aging, and the real cost of continuing to minimize the
impact that HIV, left unchecked in aging adults, will have on our
country and aging citizens. My prayer is that by sharing some of my
personal experiences and those of people who have died from HIV and
AIDS, or are currently living with the disease, you might consider them
as you determine how best to meet the needs of more than 1.2M persons
who are known to be living with HIV in our country today. I say ``known
to be'' because estimates are that approximately 25% of the people who
are HIV-positive in the United States right now do not know their HIV
status. We are fast approaching the point where truly 50% of the people
who are living with this disease are at last 50 years of age. The
pivotal study, Research on Older Adults with HIV, conducted by the AIDS
Community Research Initiative of America, told us years ago that HIV/
AIDS has a major impact on the quality of life for older adults living
with the disease. I challenge you to consider the economic impact, the
loss of life, loss of productivity, loss of tax revenues, trauma to
families and loved ones that will only grow if HIV in aging adults is
left unchecked.
I was initially diagnosed with HIV in the fall of 1994, the same
year that my only brother died as a result of complications associated
with AIDS. His name was Theodore Anthony Jackson, a budding young
businessman, having just opened his third in what was to be a franchise
of barbershops, called Tony's. He would be 55 years old today; our
country lost the benefit of his gifts and the contributions that he
would have made over the past 19 years. Only months after his death, I
was diagnosed_I was 38 years old. During that time, the only drug
widely available and prescribed was AZT_and in Anthony's case, we
believe that it did him more harm than good. As our family struggled
emotionally with Anthony's rapid decline in his physical health and
mental state, we were traumatized yet further by my diagnosis.
I am convinced that only because I moved my family to Philadelphia
in 1996 and vigorously pursued medical treatment there (and ever since)
that I am alive today. The sad fact is that many of the people who are
aging with HIV today did not know that less stigmatized environments
and more knowledgeable physicians were available then. In fact, many of
the people who are living with HIV today still do not know that there
are life-saving treatments and care available to them. This is
especially true of people known as `Baby Boomers', those of us who are
over 50 years of age. The older a person is, the less likely they are
to be health literate about HIV, their HIV risk levels, how to
establish healthy relationships, how to self-advocate and how to access
the life-saving services that they need.
One of the things for which I am immensely grateful is that, with
your support, health information technology will be used more. I
believe that as that technology matures, you will see that HIV is truly
not particular about infecting a particular group of people, but that
there are more people already infected than we think and that each of
us is at higher risk for infection than we ever imagined. In fact, if
any of us has had unprotected sex we are at risk for HIV infection.
As you are aware, the field of geriatrics and gerontology is a
relatively new one; still emerging within the larger medical community.
I urge you and your Senate and House colleagues to provide increased
resources to study, better understand, establish and widely implement
the best care and treatment practices to address the needs of people
who are aging with HIV. Support people who want to study medicine and
work on these complex, difficult and intersecting problems of aging and
HIV. The aging adults being diagnosed with and living with HIV, if left
unattended, is one of the next big health challenges that we will face
as a nation.
We have learned a lot over this 30-year journey with HIV in the
United States. Among the things we have learned is that the most
successful prevention interventions and approaches to care are those
that begin with and continue to meaningfully involve the affected
communities. The Ryan White CARE Act has provided a tremendous gift
through lessons learned and the creation of a continuum of care that
works. That continuum should be informing our work going forward in
order to undergird the healthcare reform that is now underway.
Another lesson we have learned is that the approach to ending HIV
must involve many sectors and various disciplines; this must be an
interwoven and integrated effort that involves academic, scientific,
political, at-risk populations, and other community stakeholders. We
must find ways to effectively improve and measure the change in the
quality of life for persons who are living longer with HIV and begin to
connect them, to the extent that they are able, to more productive
lives. Too often in our zeal to solve one problem, we create other
challenges. With improving care and services, and wider access for ALL
people with HIV, we can expect that some will be able and want to
return to work. Therefore, we need to develop ways to help support them
as they do so and ensure that those supports and approaches are
realistic and age and culturally appropriate. This involves working
with employers and industries to develop new ways to work and
developing more thoughtful, outcomes-driven benefit structures that
don't perpetuate poverty, but support progress and hope.
Finally, I strongly urge you to not let our mothers, fathers, and
elders die simply because we refuse to sensibly and effectively act. We
have the means and wherewithal to better serve older adults with and at
risk for HIV and to end this terrible epidemic; but only if we learn
the lessons of the past and commit the resources to get there. Please,
dear Senators, do not forget us.
Thank you for this opportunity to share some of my story. I welcome
your thoughts and questions.
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Prepared Statement of Rowena Johnston, Ph.D., Vice President, Director
of Research, amfAR, The Foundation for AIDS Research
Chairman Nelson, ranking member Collins and members of the special
committee, thank you for inviting amfAR to participate in today's
hearing on Older Americans: The Changing Face of HIV/AIDS in America. I
am pleased to share our views on the difficulties_and the
opportunities_of this growing challenge in the United States.
By 2015, there are projected to be half a million people living
with HIV over the age of 50. Some of these will be people who have been
living with HIV infection for many years or even decades, and others
will be people who are newly infected. They will all face the
difficulties of aging, and of doing so with a serious and potentially
fatal disease.
For many years, we never expected to have to deal with HIV
infection in older Americans. The good news is that research has given
us antiretroviral therapy, which has dramatically lengthened the lives
of those living with the infection. A young person who is infected
today, and who enters into and stays in medical care, can expect a
lifespan that may not differ dramatically from that of a person who
does not have HIV. While this is good news, it means that increasing
numbers of people living with HIV are older than ever, and our
challenge is that we do not know enough about the biological causes and
consequences of aging with HIV infection, or about the social burdens
borne by those living with HIV. Hundreds of thousands of people will be
entering into a phase of their life in which they and their caregivers
are not sure whether their health issues are due to HIV infection or
aging, or how these challenges should be met. Meanwhile, many older
Americans are unaware of their own risk for acquiring HIV, or how to
deal with the stigma of being an older person with a disease that is,
even today, more commonly associated with young people.
Aging with HIV is at the intersection of several of the most
pressing health challenges that face Americans who are aging. These
include cardiovascular disease, cancer, osteoporosis, liver and kidney
disease, hepatitis C and neurological diseases like dementia. People
living with HIV face an increased rate of all of these diseases, and at
a younger age, than those who do not have HIV.
Teasing apart the contribution of HIV versus its treatment towards
the increased risk for these diseases is difficult, but most
researchers believe the virus plays a pivotal role. While studies have
found higher rates of cardiovascular disease in HIV-infected
populations than in age-matched HIV-uninfected populations, the
mechanisms underlying this difference are not fully understood.
However, we know that patients who can control their virus even in the
absence of antiretroviral treatment have higher rates of carotid
disease. Several cancers that are believed to be caused by chronic
infections, such as anal cancer, Hodgkin's disease and liver cancer,
occur at a higher than expected rate. The dysfunction in the immune
system caused by persistent HIV infection is believed to be the major
contributor to these higher rates of cancers. Liver and kidney disease
are particularly problematic, as the virus can cause damage to these
organs, either directly by viral replication or indirectly by
destroying immune cells. These tissues are also susceptible to damage
caused by all medications, including those used to treat HIV infection.
The same is true for bone weakness and damage manifested as
osteoporosis and probably caused by a combination of the virus and the
drugs used to treat it.
Underlying all of these diseases is the aging of the immune system
itself. Older adults, even in the absence of HIV, experience a
reduction in the ability of stem cells to develop into immune cells; a
shrinking of the thymus, a key organ that generates new immune cells; a
skewing of existing immune cell populations away from the ability to
respond to new infections; and an increase in the production of
hormones that lead to immune inflammation and perpetuate the cycle of
the loss of ability to respond to new infections.
Evidence from the HIV research field suggests that inflammation, an
increase in cellular and hormone activity in the immune system, occurs
in both aging and in HIV infection. Older Americans living with HIV are
therefore subject to immune inflammation on two counts. Both for aging
as well as in HIV, it is believed to be a major cause of damage to
blood vessels and for the increased risk of heart disease. Any research
that can shed light on the process of inflammation in HIV disease will
by definition benefit millions of Americans who will face heart disease
now and in the future.
Researchers currently believe that many of the manifestations of
this inflammation of the immune system pose a significant barrier to
our ability to cure HIV. Therefore, a greater understanding of the
fundamental cellular processes underlying aging, such as inflammation,
will help us to address many, perhaps even most, of the diseases that
take the lives of older Americans living with_or without_HIV and may at
the same time help us to achieve one of the greatest medical challenges
of this century, namely curing an infection that has taken the lives of
tens of millions of people around the world.
Robust support for a strong research agenda will be crucial to
understanding and addressing these challenges. Research will help us
understand how to reach older Americans and provide them with the
information and support they need to prevent HIV infection. It will
also allow us to improve our HIV testing outreach so that all people
who are infected know their status and enter into appropriate medical
care. Once we bring people into care, research will help us to provide
new and improved tools to help treat not only the HIV but also all of
the other diseases we most often associate with aging but that occur
more frequently in HIV infection.
Research has resulted in drugs that are saving the lives of
millions of HIV-infected people around the world. The fact is that many
new treatments for diseases such as cancer, heart disease, hepatitis,
and osteoporosis have also arisen from research aimed at preventing,
diagnosing, and treating AIDS. Protease inhibitors, initially developed
to treat HIV, are now being tested in the treatment of cancers, for
example breast cancer. Treatments developed for Kaposi's sarcoma are
now being tested in bladder, vulvar, breast and colon cancer. Some
cancers require treatment by transplantation, and the immune
suppression can lead to opportunistic infections such as gg and
pneumocystis pneumonia. Treatments for those infections came out of
AIDS research. Protease inhibitors are also being tested in the
treatment of Alzheimer's disease. Along with nucleoside analogs, which
were also developed for treating HIV, protease inhibitors are also used
to treat and even cure hepatitis C.
Biomedical research saves lives, generates economic benefits, and
yields scientific insights that catalyze future medical breakthroughs.
Although the U.S. has long been recognized as the world leader in
biomedical research, stagnant funding (which translates into actual
funding reductions when adjusted for inflation) imperils U.S.
leadership and jeopardizes future life-saving research advances.
Funding for health research at the National Institutes of Health (NIH)
lost 22 percent in purchasing power in the decade from 2003 to 2012.
The federal budget sequester, which went into effect March 1, 2013,
resulted in an inability to fund 700 worthy research projects. Limited
funding will inevitably delay (and in some cases prevent altogether)
exploration of potentially transformative new approaches to
understanding and treating the leading causes of death and disability.
When we invest in HIV research, we are committing to understanding
and solving health challenges faced by millions of aging Americans.
This committee is well aware that the population of this country is
growing older and that tens of millions of people will face the serious
health issues being discussed here today. The benefits accruing from an
investment in AIDS research spread well beyond those with HIV in ways
we may not initially predict, but which have a track record of
improving the health outcomes for millions of Americans. amfAR strongly
supports an increase in funding for the NIH and for research on HIV and
aging, understanding that the knowledge we gain from such research has
the potential to touch on the lives of all of us.
Thank you again for giving amfAR the opportunity to testify on this
important topic. I would be happy to answer any questions you may have.
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Additional Statements for the Record
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