Surviving AIDS in the golden years
by Heather Cassell
Many people who were diagnosed with HIV/AIDS between the early 1980s and mid-1990s believed they only had 18 months to live, largely because gay men watched in horror as their friends, neighbors, and family members died.
By the late 1980s, AIDS was everywhere. Obituaries flooded gay newspapers such as the Bay Area Reporter, and mainstream news reports dealt with the latest â€“ and often unsuccessful â€“ developments in research and prevention findings. Meanwhile, activist groups such as ACT UP and Queer Nation stormed the streets of cities on both coasts and the White House demanding the government respond quicker, and approve new drugs to fight the epidemic.
Then in the mid-1990s, a medical breakthrough occurred â€“ the advent of protease inhibitors. Also known as a "drug cocktail," the combination of medications often increased T-cell counts and lowered viral loads. The new combinations of drugs brought many men and women who were on the brink of death back to life.
The result, of course, has been the increasing population of HIV-positive seniors, who are living well into their golden years. As of 2005 there were an estimated 117,000 seniors living with HIV, according to the Centers for Disease Control and Prevention, and the population is growing. In San Francisco there are an estimated 3,378 people over the age of 50 living with HIV/AIDS, according to the Department of Public Health.
With so many people living with HIV growing older, medical professionals and social service providers are often caught off guard â€“ just as the people who have been living with HIV for 15-20 years are surprised by the fact that they are still alive. But in the collective consciousness this wasn't supposed to happen and once again, the response to deliver services to this generation of HIV-positive seniors is slow.
"You went into the system you got sicker, sicker, and died, usually after diagnosis. So they didn't have to plan what they would do with long-term survivors," said Gary Myerscough, 60, a board member of the National Association on HIV Over 50. "Now we're here. Within another eight years, 60 percent or better of the people living with HIV/AIDS will be over 50."
The issue of aging with HIV began to register with members of the San Francisco HIV Health Services Planning Council in 2005. To get a sense of what people in this generation needed, they conducted a community focus group meeting. A small group of mostly gay men discussed various issues, but what rose to the top was the lack of services and information, ageism, and a general fatigue about constantly being on the front edge of the frontier of AIDS.
"We know that ageism is somewhat rampant in the gay and lesbian community," said Randy Allgaier, 49, a member of AIDS Health Services Planning Counsel and one of the organizers of the meeting. "So that's not a big surprise, but I think people often felt that their service providers who are younger don't have a whole lot of experience dealing with older people."
Allgaier explained that when the epidemic began doctors and social workers were their patients' peers, but that has all changed. The healthcare and the social service professionals today are often in their 20s and 30s, opening a gap between the generations which is comical at times, but is serious as well.
Allgaier chuckled a bit, "A lot of folks are older than the people they are getting services from and these folks have felt like being on the frontline of this disease for decades and going to a service provider who studied AIDS in college ... it's a little odd."
Paul Quin, 64, a lean and sprite man with playful blue eyes and a board member of the National Association on HIV Over 50, agreed with Allgaier that in a way it is somewhat strange to work with someone who learned about AIDS from a textbook when he lived through it and continues to live with the disease. He suggested that the discomfort of generational differences can lead to miscommunication because there are two different frames of reference. There is also the fact that young people don't want to think about older people in a sexual context â€“ and HIV/AIDS continues to be considered as mostly a sexually transmitted disease in many people's minds.
"It's really not sexy being a 50-year-old as it was being a 25-year-old," said Dr. George Harrison, medical director of UCSF AIDS Health Project. "In other words, it may be less compelling for the general population â€“ and particularly the queer community â€“ to come forward and support elder gay men ... being over the hill is not a good calling card, unless you've got some sugar to go along with that daddy part."
No road map
Another problem is how to proceed when there is no road map. Some of the people who continue to be at the forefront of the epidemic and survived are tired of carrying the burden of being the ones to always be the first to be tested, the first to try the new drug, the first to live longer, and now the first to become seniors.
"A lot of these people have had HIV in their lives for decades," said Allgaier. "So they're tired of being on the cusp of everything going on. People are frustrated by it, people are resigned to it, people find it ironically humorous every time something new happens in this epidemic: this group of people tends to be on the edge of it."
"My family is a pioneer family, what can I say?" joked Quin, who was diagnosed with AIDS at the beginning of the epidemic and participated in drug trials until the mid-1990s. "One of the things that you learn as a young gay man is how to open yourself very wide," he said about the number of drugs he has to take on a daily basis.
Quin takes this fact with a sense of humor. He admits it hasn't been easy, but it is how he copes with the reality of his life. After being on the edge of death several times he is grateful for the medical advances that he participated in, particularly so he could be a part of his son's life.
Others participated in research experiments by circumstance.
"I came to the conclusion a long time ago with HIV and with doctors and their patients â€“ it's pretty much hit or miss," said Billie Cooper, 47, a transgender woman who was diagnosed with HIV during the
Additionally, service providers are often not prepared to handle HIV-positive seniors, especially once they enter assisted living and convalescent homes. These places often aren't even prepared to deal with the large numbers of LGBT people who will be entering them in the next 10 to 20 years.
"In the larger scope in the queer community nursing homes aren't set up for queer folk," said AHP's Harrison. "Certainly, our social systems are not primarily set up to serve people who are different than the mainstream and then when you think about the long-term issues for people with HIV, the systems that have been in place for elders cannot â€“ have not â€“ adequately accommodated this particular population."
A major issue is the general inertia by service providers. Not much focus has been placed on figuring out what will be needed to provide adequate services to this community.
"I notice in the mainstream, when I go to American Society on Aging conferences nationally, that the agendas and the curriculum of sessions that are held are very underserved about HIV at all when dealing with aging," said Bill Kirkpatrick, a social worker and facilitator for New Leaf: Services for Our Community's senior men's HIV support group, one of the few services for HIV-positive men over 50. "We haven't had a model of HIV and aging, so no one knows how long-term treatment or long-term chronic illness and the geriatric condition will impact the emotional state, the physical state, or the economic situation of the individual."
While many people are concerned, Cooper isn't fazed much by the challenges of living with HIV and growing older. Neither is she worried about being discriminated against when it is time for her to receive long-term care.
"There are so many positive things happening for the transgender community. I think that in 10 to 20 years there will be a convalescent home or a village somewhere where transgenders could go. I'm not too worried," she said when the Bay Area Reporter asked if she has thought about the issues she might face when she reaches her 70s and 80s. She looked off into the air pensively as she thought about the question, then said she hopes that she is able to remain independent into her 70s. A moment later her concern dissolved as she smiled and expressed that she just looks forward to living another 30 years.
The comedy of maladies is that when people expect to die, but end up living, they are left with an unknown in the equation of their life. People are responding to this in different ways.
"I've been to the edge and back several times and so as I get a little older, well, it's just one more thing," said Quin. "In the context of being sick with HIV, age isn't a big deal. The rhythm is an HIV rhythm. I feel like I'm at the beginning of a new life in a way and it suggests what I could be doing that could be entertaining; that would provide me with a little income; something that would engage me with the world."
The fact that Quin is considering finding something to do with his life that will provide an income isn't unusual. Baby boomers are concerned that they won't have enough income to support themselves once they enter long-term care. So, when most people are considering retiring, or are supposed to be, this generation is embarking on second, third, possibly even fourth careers. For some it's a matter of remaining active and engaged in the community, but for many earning an income is a matter of surviving, especially when chronic illness is factored into the cost of living.
"I expected to die. I thought well, I have this money I'm going to enjoy what's left of my life. I'll be dead in two years," said Krandall Kraus, 62, author of Bardo and other novels. "So I did. We traveled and didn't say no to ourselves. Then lo and behold along came the cocktail and I'm no longer going to die. I don't have any money."
With little money, many HIV-positive seniors are dependent upon government services such as Medicare and Medicaid, the AIDS Drug Assistance Program, and Social Security. Even with these services combined there just isn't enough to meet individual needs.
This issue is becoming apparent to some government leaders. California just ushered into law the Older Californians Equality and Protection Act (AB 2920) authored by Assemblyman Mark Leno (D-San Francisco), which mandates that the Department of Aging and local agencies begin adapting to accommodate LGBT seniors' needs and concerns.
David, 59, who asked that only his first name be used, is a member of the senior men's HIV support group at New Leaf. He expressed his gratitude for living in San Francisco, "I feel lucky to live in San Francisco. They will take care of me, but if I was anywhere else I wouldn't have that feeling. I feel very fortunate."
Aside from healthcare, housing, and financial issues there is the high potential for isolation. Many seniors live alone and with a generation that survived the decimation of their friends, making new friends can be difficult.
Kirkpatrick told the B.A.R. that having the group was very important to the men.
Quin agreed. "You know you have to make new friends. It's a job that never quits, you just always have to make new friends."
When asked if being queer has contributed to his perspective about HIV, surviving, and getting older, Quin smiled, "I've always thought that being gay was a blessing. It didn't allow me to step into an unexamined position in life. It really broke down the categories for me: generations, social class, all kinds of stuff. Having HIV is kind of like that. I think that being gay helped me adjust to having HIV."