Linda Dahlstrom article for MSNBC tells one man’s story of aging with HIV. It is a touching and personal chronicle of the path so many gay men have had to travel from the trauma of diagnosis, living through innumerable losses, to facing the unanticipated social, emotional, and physical challenges of growing older.
For the full article go to: msnbc.com
On Memorial Day, the New York Times published an article by Dr. Lawrence Altman remembering the early AIDS epidemic of 30 years ago. His article poignantly reminds us of those desperate days when there was little scientific knowledge, and a great deal of misinformation, fear, and stigma. He memorializes those who died in the early years, for whom “the wait for effective treatments — a decade or so after the first reports of the disease — was far too long.” His report acknowledges how far we have come, yet does not deny the continued gaps in our knowledge and lack of progress made in developing an AIDS vaccine.
For me the timing of the publication of this article resonates strongly. The AIDS epidemic of the 80’s and early 90’s was a war that needs to be memorialized. A generation was lost to the disease and those that remain are scarred emotionally by the battle.
While it raises painful memories, Altman’s article offers us an opportunity to remind ourselves of what we have lived through, and to remember the friends that we have lost. I believe that the ability to reminisce is an integral part of healthy aging. This kind of life review allows us to learn from the past, not live in it, to draw on past experiences for life lessons and guidance to help us cope with challenges in the present. I am grateful to Dr. Altman for his work in the field of AIDS and for sharing his experience.
In yesterday’s New York Times, columnist Roni Caryn Rabin reported on the results of the California Health Interview Survey. The study, conducted by the by the Center for Health Policy Research at the University of California, Los Angeles, presented alarming statistics about the health of the aging LGBT community in California.
Among the statistics reported on gay men’s health and aging were the following: “Older gay and bisexual men — ages 50 to 70 — reported higher rates of, and physical disability than similar heterosexual men. Older gay and bisexual men also were 45 percent more likely to report psychological distress and 50 percent more likely to rate their health as fair or poor. In addition, one in five gay men in California was living with infection, the researchers found. Yet half of older gay and bisexual men lived alone, compared with 13.4 percent of older heterosexual men.”
Reading this article, I was once again reminded of my early career as a social worker in the field of LGBT aging. In the 1990s I was one of a team of clinicians who presented similar statistics to service providers in order to change public policy and advocate for LGBT sensitivity in programs for the elderly. We were invited to senior centers and other agencies to teach providers how to adequately care for their LGBT clients, and much of our work involved explaining how the stigma of homosexuality impacted that generation of seniors and how agencies need to assess their programs to root out ways they perpetuate that stigma.
We shared our clients’ histories of discrimination – how they had been rejected by families, fired from jobs, dishonorably discharged from the military, harassed, evicted from apartments, beaten, arrested, and institutionalized just for being gay. We talked about the effect this stigma could have had on their self-esteem. How many had to hide their sexuality and create dual lives.
We demonstrated how stigma can lead to shame and low self-esteem, and how many people react to being labeled “deviant” by hurting themselves through neglect and self-destructive behavior.
And, we stated that while things had changed during their lifetime, discrimination was still a reality in the lives of LGBT seniors. Their sexuality was not represented, and often shunned, at the very agencies in which we were invited to speak. The conclusion – “Given their histories of stigma, it is understandable that many of our clients are distrustful of health care providers. It is the service providers’ responsibility to earn the trust of LGBT seniors.”
Our model of service provision came from the clients we served. I had heard many stories of resilience from LGBT seniors, and these people helped me figure out how sensitivity and empowerment can be used to help others who had experienced lifetimes of homophobic oppression.
Reading the New York Times article I was saddened, but not surprised. I had hoped that things had gotten better in the last two decades. That this generation of LGBT elders had not experienced the same health-damaging effects of stigma. And, that service providers had learned to eliminate the barriers that prevent people in the LGBT community from getting the care that they need. But, these statistics show that these problems persist.
While researching Aging with HIV: A Gay Man’s Guide, I interviewed men who shared stories of discrimination. They told how stigma affected their self-esteem and self care. They also demonstrated resilience in the face of homophobic discrimination, how they had built on their strengths, sought out support from the community, and developed strategies to empower themselves and others.
There are many challenges of aging, but for gay men living with HIV they are compounded by the realities of homophobia and AIDS stigma. I hope the release of these new findings encourage a conversation to find new ways to fight stigma and improve the health and well-being of the aging LGBT community.
Follow the link to read the NY Times article.
In her blog post, Nurse Practitioner Bethseba Johnson discusses her path from work with the elderly to people living with HIV. I enjoyed reading her story and related to some of her experiences.
In the early nineties I went back to school to get my Masters in Social Work. Before graduate school I had worked at the New York City Department of Health, Office of Gay and Lesbian Health Concerns and the New York City AIDS Hotline and had been an HIV educator and activist. I had also just lost my life-partner to AIDS and had decided to dedicate my career to social work and HIV.
So, one day while at my job at the AIDS Hotline, I received a call from Hunter College to tell me that in the coming fall I would be Interning at SAGE (formerly, Senior Action in a Gay Environment.) “Old people!” I thought, “I don’t want to work with the elderly!” I had a million reasons why this would not be a good placement for me: I was an activist, work with the aged is boring. I was a very young man, myself and couldn’t relate to older people. I wanted to do HIV work. Looking back, I know now that I was afraid. I was intimidated by the idea of working with older people, and thought I had little to offer them.
I look back on that year with a deep sense of gratitude – to my supervisor, Arlene Kochman, to the staff and volunteers at the agency, and to the clients I worked with. I think I got back far more than I gave. The work was far from boring. I was constantly busy – doing home visits, helping people get entitlements, doing individual counseling, running support groups. I learned so much about aging in general: the physical, emotional and social changes that accompany growing older. And I grew to appreciate the importance of the gay community for that generation of older adults. I was privileged to hear the life stories of gay men and women who were part of the early gay rights movement. I observed their strength and resilience in the face of discrimination and abuse. And, I saw the impact that stigma can have self-esteem and social involvement – a potentially damaging combination for older adults. I received training on end of life care. And, I learned a strengths-based approach to help people make the most of older adulthood.
Because of my background in HIV education, I was assigned several older gay clients who were living with HIV. Eventually, I took over a support group for people living with HIV. Ours was one of a handful of groups for people aged fifty and older. Many men came to the group, because they felt like outsiders in HIV-support groups for younger men, they couldn’t talk about HIV in mixed settings and they wanted to be in a group of their peers. This was before the era of Protease Inhibitors, so much of our time was spent discussing mortality. I continued to run this group for several years after my placement ended. During those years, we lost several members, and the group was a supportive environment (for me, and, I believe, for the members) to deal with the losses we were experiencing inside and outside the group. But, the group wasn’t just about death, it was was about life, and each week people brought in their concerns, challenges, achievements and hopes, and they knew they could talk about whatever they needed, that they wouldn’t be judged and that people would understand. It was through this work that I developed my appreciation for the healing power of group work.
My experience at SAGE was a great foundation to build a career in social work and psychotherapy. And, now that people are living with HIV into midlife and beyond in increasing numbers, I appreciate my early training in the intersection between HIV and aging even more. By 2015 over half the number of people living with HIV in the US will be aged 50 or older, and we will all need to educate ourselves on the realities of aging with HIV.
To read Bethsheba Johnson’s story go to The Body Pro.
Sean Cahill, Managing Director, Public Policy, Research and Community Health at Gay Men’s Health Crisis (GMHC), wrote a piece on Aging with HIV for The Huffington Post. In it he talks about diverse men and women who have lived longer than they ever expected, and highlights some of the issues they have in common. To read the article go to: http://www.huffingtonpost.com/sean-cahill/post_1721_b_822262.html
I just received this notice from hivaging.blogspot.com:
Aging and HIV Conference Scheduled The 2nd International Workshop on HIV and Aging has been scheduled for October, 2011 in Baltimore, Maryland. Abstracts are due September of 2011. For more information, go to: http://www.conferencealerts.com/seeconf.mv?q=ca1im80x
Thank you Dr. Emlet for keeping us posted.
Dr. James Schmidtberger, co-author of Aging with HIV: A Gay Man’s Guide was recently interviewed about his two decades experience working as a physician with people living with HIV. Read the article at the New York City Health and Hospitals Corporation website.
POZ magazine on line listed this video on Aging with HIV as one of the top ten for 2010. The article, posted on May 12th by Willette Francis, includes a video of GMHC Executive Director, Dr. Marjorie Hill, reporting the results of their study, “Growing Older With the Epidemic: Aging and HIV.”
In case you missed the original article and video, here is the link: http://www.poz.com/articles/GHMC_HIV_aging_2296_18404.shtml
We are at the end of the third decade of the World AIDS epidemic. The disease has impacted the lives of people throughout the globe and reshaped societies. Today the epidemic has a very different meaning in the developed world than twenty-nine years ago. Because of advances in the treatment of HIV disease, Aging is now THE issue in the United States. Not only are people living longer than expected, but by 2015 the majority of people living with HIV in the US will be over fifty years old. The aging of HIV means that we need to develop new policies and treatments for the disease. People living with HIV must adapt to the challenges of growing older and develop new mindset of Optimal aging with HIV. To read my World AIDS day article for Edge magazine follow this link – Edge magazine.
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.