Gratitude
I would not have been able to write Aging with HIV: A Gay Man’s Guide without the support of so many people, particularly the men who let me into their lives and shared their experiences with me. They are the reason why this book exists. There’s Tim (all names have been changed) who gives tribute to the friends he lost when he does activism in the community. Arthur who is grateful to his parents for giving him support and self-esteem when many of his friends were rejected by their families for being gay. Joe who never thought he would live to see middle age and now practices gratitude toward his body every day he wakes up. These men have experienced so many losses and, yet, they are thankful. I am grateful to them, because the experience of getting to know them has changed me, and taught me to appreciate the opportunities that I have been given.
Happy Thanksgiving.
The Books Are on Their Way
I just got a note from the Editor that Aging with HIV: A Gay Man’s Guide is on its way from the printer and will be arriving at the offices of Oxford University Press tomorrow. How long it will take it for you to find it in a bookstore near you is still unknown. Apologies go out to Amazon.com users who have been told that they will not get their copies for a few more weeks. I hope that the wait turns out to be shorter.
SAGE conference update
Last Saturday Dr. Stephen Karpiak and I spoke at the SAGE National Constituents Conference, The Future of Aging is in Our Hands! Our workshop, “Aging with HIV: The Complications for Success,” was well attended by a mix of people, including gay men living with HIV, activists, and social workers from the LGBT community.
Dr. Karpiak presented the background statistics, using graphs compiled from CDC and other data, which clearly and dramatically demonstrated the magnitude of the issue. People over fifty make up a large and growing segment of those living with HIV. He also presented the findings from the ROAH study from ACRIA on HIV Over Fifty. The data gives a picture into the psycho-social issues faced by this group. Particularly striking to me was the multiple co-morbid conditions (issues including depression, physical illness, financial limitations, lack of social support) that impact the lives of people living with HIV over age fifty.
Dr. Karpiak shared his evaluation about the workshop with me: “It is always reinforcing to see research data supported by the observations of the clinician. This was clearly the case at our dual presentation at the SAGE Meetings this past weekend. ACRIA’s research on the older adult with HIV (ROAH) describes a population who are long-term survivors in the HIV epidemic. They have had to develop different coping strategies as they shifted from the expected short life following an HIV/AIDS diagnoses to a long life span due to effective drug treatment. And now they face another challenge. At age 50-60 they are developing multiple age-related disorders that would typically be seen in 75+ year old adults. We know that successful aging is achieved when the person has support from their social networks – caregiving. But the older person with HIV, like the older lgbt person, is largely without traditional family networks from which most caregivers are derived. They cannot fight this next challenge alone. How will our community respond to this need? Will they respond ?”
For my part, I focused on what we know about aging from the gerontological literature and the unique concerns I identified in my research on HIV over fifty. People over age fifty living with HIV face many of the same challenges of aging as those who are HIV negative. However, HIV complicates the picture in a number of ways, including, but certainly not limited to, symptom ambiguity – the difficulty determining whether an ailment is age or AIDS-related. After presenting the challenges faced by people aging with HIV, I presented some of the solutions found in the gerontological literature to help people optimize their experience of aging.
The workshop included a lengthy group discussion in which audiences members shared their experiences, challenges, and what works for them. It was exactly the type of conversation that I advocate for in Aging with HIV: A Gay Man’s Guide, to empower people to define Optimal aging with HIV for themselves.
Public Policy on Aging with HIV
A reader, Loren M., recently completed a course on public policy in Aging with HIV at San Francisco State University, Gerontology program. He has researched the issues around Aging with HIV, and has shared the result of his studies. For a report on Aging with HIV Policy go to my post – Aging with HIV Goes to the White House and read his comment.
Thanks Loren M. for sending that information to us!
The Future of Aging is in Our Hands!
Just a reminder that I will be presenting on Aging with HIV with Dr. Steven Karpiak of ACRIA at the SAGE National Constituent Conference this Saturday, November 13th. I’m glad to be a part of this hands-on conference. It should be an empowering experience.
- Thought-provoking workshops and plenary sessions on a wide range of topics that affect LGBT older adults, such as self-advocacy and empowerment, health and wellness, aging and ageism, and caregiving;
- Renowned speakers from across the LGBT and aging fields;
- Free clinics where you can get advice from experts on the legal, financial, health and financial issues that directly impact your life;
- Special documentary film screenings;
- Opportunities to network with colleagues from across the country;
- And much, much more!
The Lazurus Effect
I was recently asked by a reader of Aging with HIV: A Gay Man’s Guide to comment on the term the Lazarus Syndrome. This man, a gay man living with HIV in middle age himself, wondered why I don’t refer to the term in my book and why it seems to be out of favor in the field. I thought it was a very interesting question, and I thought I would share my response with you.
You raise a very interesting point. I, too, remember when the term, “Lazarus syndrome” was used by researchers, clinicians, people living with HIV, and the media. With the introduction of protease inhibitors some people with HIV found a new lease on life. (I say, “some” because I knew many people for whom these early advances were not helpful. There continued, and continue, to be deaths to AIDS and many experienced debilitating illnesses and side effects even with the advent of HAART.) But, people were surviving, and for many this felt, as you put it, “miraculous.”
I think the term, Lazarus syndrome, emerged to describe the experience of people who, spared from imminent death, had to concern themselves with the challenges of living with HIV. In retrospect, I see how using that term helped people put a name to the feeling that they had lived longer than expected, and, having identified themselves as survivors, could then set out to “live” with HIV.
I am not sure, however, what the “syndrome” was that the term was meant to describe. Doctors use the term “syndrome” to identify a collection of symptoms that occur together. I don’t believe a syndrome was ever identified in people living with HIV who had survived longer than expected. Perhaps, that is why the term has fallen out of favor. I have also read the term Lazurus Effect, which seems to me more accurate.
Instead of one “syndrome” we see several dynamics impacting people living with HIV. Concerns related to managing chronic illness, stigma, depression, financial concerns, survivor guilt, etc. have all been studied, but, as far as I know, there is not one clinical picture of people living with HIV.
And, now, a whole new set of issues are arising as people are facing the unanticipated challenges of aging with HIV – which is why I wrote the book.
So, my long winded response to your question is, yes, the Lazarus effect, is still a concern. However, in my opinion, the longer people survive with HIV and the virus evolves into a chronic illness, the term will only describe a part of an increasing complex picture of what it means to live with HIV.
Do you think the “Lazarus Effect” accurately describes the experience of living with HIV today?
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.
1,000 Copies Pre-sold!
We still have one month before publication of Aging with HIV: A Gay Man’s Guide and we’ve already hit the 1,000 mark. Because of your interest in the subject, bookstores and libraries across the country have pre-ordered 1,000 copies of the book. Thanks for your help getting the word out there.
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.
AHA Project 