Today the United States Supreme Court struck down the Defense of Marriage Act (DOMA) paving the way for gay marriage. I am exhilarated and so deeply moved that it will take me some time to process the significance of this event. I would like to write a few immediate thoughts as I take in the ramifications of this day.
On a national level the ruling raises the concerns of LGBT people to their rightful place in the discourse on human rights. And, on a very personal level, it means that my marriage is now federally recognized.
Yet, there is so much more.
I am deeply grateful to Edith Windsor. In fighting for her rights as a married woman, she took up a cause that will have implications for all of us. I applaud all the activists who participated in this case and who are fighting for LGBT rights in so many other battles. There are too many people who continue to experience the pain of abuse and oppression.
When I heard the news my mind went immediately to my lover who died of AIDS in 1991. He participated in changing his world for the better and I think he would have been so proud to know how far we have come. There is a long history of activism in our community that has led to this event, and I want to honor those who came before and are not here to reap the rewards.
In my psychotherapy practice I often have to help people through feelings of sadness that accompany a joyful event. They wonder why they should be crying when they are so happy. I let them know that it is normal to feel grief when we get what we want. We are encountering the feelings of loss that have been kept at bay when we couldn’t have what we were longing for.
As with any change, including changes for the better, there will be a period of adjustment. For many of us this ruling will create shifts in how we relate to ourselves and others. We must reexamine the walls that we created to protect ourselves from the homophobia of our pasts. We might find that defenses that were necessary at the time may no longer serve us. As someone I spoke with today said so eloquently, “I need to learn how to be accepted.”
I feel such love for my husband. I have to wonder whether the lack of recognition of our marriage might have affected the quality of our relationship and how this judgment could offer us an opportunity to deepen the commitment we have to one another.
I’m glad to be alive on this momentous day, to learn and grow. Lets keep the conversation going and help each other adapt to the changes ahead.
When a woman with HIV realizes that she’s lived longer than she ever expected and begins to rebuild her life, that’s an aha moment.
When a doctor and patient sort through the complexities of HIV, the medications used to treat the virus, and the realities of aging to identify an effective treatment, that’s an aha moment.
When a group of gay men acknowledge how the AIDS epidemic has impacted every aspect of their lives and start the healing process together, that’s an aha moment.
When a politician recognizes that AIDS is not over and funds programing to meet the challenges of HIV and aging, that’s an aha moment.
In the past two years since the release of Aging with HIV I’ve met many amazing men and women who are living with HIV longer than they ever expected. Throughout the country we’ve created conversations that have expanded our understanding of aging with HIV. Together we’ve exchanged information, shared experiences, processed feelings and built communities. It’s been a real learning experience filled with aha moments.
That’s why I’ve decided to start the AHA Project (Action for HIV and Aging) to facilitate discussions that empower people to define for themselves what it means to optimally age with HIV.
In the coming weeks agingwithhiv.wordpress.com will become ahaproject.org. I appreciate your patience as I develop the site to reflect its developing mission.
Last week the American Academy of HIV Medicine, the American Geriatrics Society and the AIDS Community Research Initiative of America (ACRIA) published recommended treatment strategies for clinicians managing older patients with HIV. This is a major step in the medical treatment of HIV recognizing the unique and complex medical issues faced by this growing population. It is the first time best practice guidance has ever been developed for HIV practitioners and other health care providers who treat diagnose and refer older patients with HIV disease.
The report contains specific guides provided for Diabetes, Cancer, Hypertension, HepC etc. as well as HIV testing and Sexual Health and more. While it is directed at practitioners, people living with HIV may want to familiarize yourselves with the recommendations and discuss their relevance to your care. The full report is 76 pages, but an executive summary outlines the treatment recommendations in each area.
To view the overview, executive summary, or full report go to the American Academy of HIV Medicine webpage.
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.
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
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!
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.
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%.
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.