Aging with HIV Goes to the White House
I just received an update from Dr. Steve Karpiak from ACRIA about the White House meeting on aging with HIV held last week. Dr. Karpiak was among the 100+ invited attendees at this meeting to “raise awareness about people who are aging with HIV or contracting HIV as seniors (>50 years of age); to explore unique clinical manifestations of HIV infection among older adults; to discuss existing services for seniors living with HIV and highlight successes as well as gaps; and to discuss targeted strategies for Federal and non-Federal stakeholders to realize the vision of the President’s National HIV/AIDS Strategy” according to the White House Office of AIDS policy. There is a link on this page to a youtube video of the meeting.
Here are some observations Dr. Karpiak made of the event:
Education – The need for those in the world of HIV/AIDS and those who work in the Aging universe to know about the increasing number of older adults living with HIV. The epidemic is no longer young only! In fact it is now old – mostly!
Research – This is a given. Research dollars are always scarce, but the need to address this issue is now growing at a rapid pace. Many spoke about ACRIA’s seminal 1000 person study ROAH (Research on Older Adults with HIV) illustrating that community based research can significantly affect the dialogue.
Health Outcomes – There is a need to assess bottom lines – health outcomes. What works – what does not work – and move forward using evidence based information and not conjecture and anecdotes, or, providing services that makes everyone feel good – except the client.
Prevention – There is a vacuum. No systematic evidence based prevention effort targeting older adults (HIV negative or positive) has ever been developed for the over 50 populations – emphasis on the S. Prevention messages for the 50-60 year old are likely very different than those for the 70+ group! ACRIA has much to share with 3+ years experience n developing such initiatives in NYC (funded by the New York City Council) and across the US (funded by the MAC AIDS Fund).
Isolation – Acknowledgement by almost every person who spoke in the room that the older adult living with HIV is socially isolated due to the toxic forces of stigma which contribute to their high rates of depression, substance use and poor mental health management.
Power – The power of the voice of the peer PLWHA over 50 is unquestioned. There were community members, ASO staff, people of faith communities, and government staff who were HIV+ and over 50, some LGBT – their bearing witness is potent.
Partnerships – The HIV world must collaborate with the Aging world. Those in HIV/AIDS cannot ignore the massive knowledge and experience of those who work in Aging. Time and resources will have been wasted unless there is collaboration from both domains. ACRIA is unique in that it has done this for the last 8 years.
Thank you Dr. Karpiak for sharing your thoughts. I will continue to pass on more information about the event and of any policy changes that emerge as a result.
Accelerated Aging (revisited)
Medscape has been posting discussions with researchers who attended the 1st International Workshop on HIV & Aging in Baltimore on October 4&5. The latest interview is on the role of mitochondrial damage in Aging and HIV-disease with Douglas Wallace, PhD, a leading researcher on mitochondria. The full interview can be viewed here.
Dr. Wallace explains that mitochondria play a key role in aging. As we age mutations in our mitochondria weaken cellular functioning. Over time this damage lead to the clinical symptoms seen in aging.
Dr. Wallace adds that, “chronic HIV infection can result in sufficient mitochondrial dysfunction to generate many of the same clinical problems seen in aging.” While he points out that much more research needs to be done on the interaction between HIV and mitochondria, his statement suggests that this relationship may be an important feature in the symptoms currently referred to as accelerated aging in people living with HIV.
Several of the men I interviewed for my study talked about physical changes that accompanied aging with HIV. They said that often it was difficult to determine which symptoms were age-related and which were HIV-related. Many spoke of feeling older than their HIV-negative peers, and that they had symptoms common to much older men.
The science around aging with HIV has not evolved enough to explain whether these reports are symptoms of the physiological effects of living with HIV, the results of taking HIV medications, or of the emotional impact of living with HIV.
Until this relationship is clarified, people living with HIV must find strategies for optimal aging, addressing the physical and emotional complications of living with the virus into midlife and beyond. Talk to your doctor about any symptoms and develop a self-care regimen that works best for you.
Accelerated Aging
There has been much discussion lately in the blog-o-sphere about accelerated aging among people living with HIV. The term “accelerated aging” refers to a collection of conditions (heart disease, bone loss, cancer and cognitive decline) that are more common in HIV-positive people in their 40s and early 50s, compared with HIV-negative people of the same age. There is a great deal of controversy about using this term given the lack of research in this area. Many argue that one cannot combine these conditions under the heading “aging.” Researchers are also unclear whether these conditions are a result of age, long-term HIV-infection, long-term use of highly active antiretroviral treatment (HAART), or the presence of other infections. The researcher, Dr. Charles Emlet, sums up the research on his blog and links to a POZ article on the subject.
In another related article, Medscape writer Bob Roehr, interviews Steven G. Deeks, MD, a professor of medicine in residence at the University of California, San Francisco (UCSF), and codirector of the Population and Clinical Sciences Core at the UCSF-GIVI Center for AIDS Research. In the interview Dr. Deeks discusses the controversial topic of accelerated aging. He focuses on chronic low-level inflammation demonstrated among people living with HIV taking HAART. He states that while the presence of elevated markers for inflammation is “well accepted” among scientists, the effect is “not particularly dramatic.” Dr. Deeks suggests that more research needs to be done on the relationship between chronic inflammation and CMV disease. He adds that inflammation levels are much higher in people who are untreated with HAART than in those who are treated. His recommendation – “For now, lifestyle changes such as diet and exercise may be the most useful interventions. They have demonstrated efficacy in dampening immune overactivation and restoring a more normal homeostasis.”
I am sure that there will be much more to say about this topic. Add your thoughts, personal reflections or research updates here or on the “community” page.
Talking with Mark S. King about Aging with HIV
Mark S. King writes MyFabulousDisease.com and is a blogger for TheBody.com. Recently he wrote me with questions about Aging with HIV: A Gay Man’s Guide. Here is what I wrote him:
Thank you for including me in your blog posting on Aging with HIV for MyFabulousDisease.com. Your site is a perfect forum for this timely dialogue.
In your note you asked several questions about the physical complications of aging with HIV and the emotional interaction between living with HIV and aging into midlife and beyond. Both, are very big subjects. And, while there is growing interest in this area, we are just beginning to understand what it means to age with HIV. We are at the forefront of a new era in HIV treatment, and much like the early days of the epidemic, people living with the virus are the experts and have to keep updated on new developments and partner with their doctors in order to determine the best course of action.
This is the reason why I wrote Aging with HIV: A Gay Man’s Guide – to help gay men who have lived longer than they ever expected as they manage the transition of aging.
The literature presents several emotional challenges that accompany adult development. They include, among others, physical changes, new roles in the family, and shifts in our work lives. For gay men living with HIV adaptation to aging also involves responding to changes in the AIDS epidemic and the transition of HIV from a terminal illness to a chronic disease.
Aging is a challenge for all of us. But, for gay men living with HIV it is even more complex. As you know, this generation of gay men living with HIV have spent the last two decades embroiled in a battle with the AIDS epidemic: Caring for themselves and loved ones; living through immeasurable losses; and managing their own threat of mortality. This war has utilized all their emotional resources and few have had the time to consider the challenge of aging.
It is easy to get stuck in the task of adapting to aging with HIV. Signs of stagnation include living in the past, isolating, and avoiding social involvement. Research has found higher rates of depression, lack of social support, and reduced quality of life among middle aged and older people living with HIV. Adapting to aging with HIV can become complicated when emotional issues such as HIV-stigma, internalized ageism, unresolved grief, or survivor guilt impact one’s ability to care for oneself fully in the present.
Aging with HIV: A Gay Man’s Guide offers guidance to navigate this uncharted territory. The book draws from my qualitative research, as well as my training as a psychotherapist and 20 years of experience in the field. Questions and exercises guide the reader through self-examination to evaluate how he is adapting to the challenges of aging with HIV and to develop tools to optimize their experience. There are quotes from gay men living with HIV, as well as brief text boxes that review the relevant research. The book also includes a chapter by James Schmidtberger, MD, Director of the Leicht Clinic, an HIV-clinic in New York City, reviewing the medical research on HIV over fifty.
My hope is that Aging with HIV: A Gay Man’s Guide will start conversations across the country that normalize the experience of aging and empower gay men to define for themselves what it means to optimally age with HIV.
HIV prevalence aged fifty and older
The CDC released its HIV surveillance report 2005-2008 in June and Dr. Stephen Karpiak of ACRIA just sent me the data on HIV prevalence in the over fifty population. 
The number of people over age fifty is increasing exponentially, and one of the greatest population increases is for people between the ages 50-65. These figures include increases in the rates of new reported cases of HIV, as well as people living with the virus over age 50. Looking at these figures I conclude that midlife and older people living with HIV are going to represent a growing percentage of those living with HIV in the US and the specific issues faced by this age group are a growing health concern.
| In 2007 the total estimated number of people living with HIV/AIDS climbed over the million mark, and the percentage of people estimated to be living with HIV/AIDS over age 50 was 31%. This percentage rose in 2007 from less than 26% estimated in 2005. Given the rate of increase (2.2%) we can estimate the current (2010) number of people living with HIV over fifty to be closer to 40%.
The CDC also estimates that in 2008 16% of new diagnoses of HIV occurred in people over fifty. This is an increase from the 2006 CDC estimate of 10%. |
Aging with HIV coming to the White House
Next week the White House will be holding a meeting on HIV and Aging. The purpose of this meeting is to raise awareness about people who are aging with HIV or contracting HIV at age fifty or older; to explore the unique clinical manifestations of HIV in older adults; to discuss existing services for seniors living with HIV and highlight successes as well as gaps; and to discuss targeted strategies for federal and non-federal stakeholders to realize the vision of the President’s National HIV/AIDS Strategy. This meeting is part of a series of discussions that have been convened at the White House by the Office of National AIDS Policy (ONAP) over the past year. The invitees are leaders in the field of research on HIV Over Fifty and include Charles Emlet, PhD, Professor of Social Work at the University of Washington, Tacoma and Dr. Stephen Karpiak from ACRIA.
I am excited to learn of this meeting, as it tells us that the concerns of middle aged and older people living with HIV are being discussed at the national level. I will relay to readers the results of this meeting when I get them.
AHA Project 