In April I attended a long-term survivor focus group discussion about participating in HIV cure-related research in Seattle sponsored by The Martin Delaney Collaboratories and the National Community Advisory Board. In a packed room at the AIDS Clinical Trials Unit, we were led through a series of questions. There were separate groups for women and people of color, but I chose the long-term survivor group because I am a long-term survivor. I was one of two women in the group of mostly older men. I am an elder as well. Coming soon: over 50% of people who are HIV-positive will be over age 50.
The group was what I expected. I've been in many groups with some of these same men, usually as a case manager, since I spent 18 years working in HIV/AIDS in Seattle. My work in the field helped me process and deal with my own status. One of my personal goals was to learn everything possible about the disease.
Going to this focus group was a new layer of my coming out process. When I walked into the room, to my embarrassment the men applauded. Aside from the moderator, I was the only woman, although another woman joined the group later. Only two friends in the room knew my status before I entered. I had contacted them early to ask if they were attending and encouraged them to do so. I wanted their support. They are politically active so I knew they would most likely be willing. I sat next to a man who used to be a volunteer where I worked. I felt at home, as I do around gay men.
The facilitator led us through a series of questions such as: What does the term "AIDS cure" mean to you? Why would you choose to join a study? Why would you choose not to join a study? We were encouraged to keep our answers short.
I would join a study for science if I would qualify. Women are often ruled out. There were a few studies I've been eligible for earlier, and I've called to be screened for many studies. Being female with so many more hormones than men, and the risk of pregnancy, tends to be a disqualifier. For other medical studies not about AIDS, being on AIDS meds is a disqualifier. Certainly being over 60 may put one over the cutoff age. And would I have to stop taking the medications I'm on now? I waited a long time to take medications, which I believe saved me, but now there is no one easy pill I can take. It took a long time to get on a regimen I could tolerate. I developed resistance to the whole NNRTI class of HIV drugs, so some of the new drugs will not suppress my virus.
One question was interesting. Would you define yourself as healthy or unhealthy? I consider myself healthy; it is part of my self-talk and spiritual healing process not to think of myself as sick. Most in the room stated they are unhealthy. The discussion that evolved asked who decides if we are healthy or not when there is so much hidden in this disease. And fear, because if Social Security Disability decides someone on benefits is healthy they will lose their benefits. So what does that mean in terms of income? Housing? The ability to get assistance with medications or otherwise? There is a lot to lose in the semantics of how our health is defined and by whom.
For a fact, I do not have the energy I used to, possibly not the same mental clarity. There is aging that makes such innocuous changes blurry as to the cause. And of course, there is the virus. Even if it is undetectable, even with a decent CD4 count, it is an inflammatory agent in our body causing stress and an accelerated process that impacts our organs. My health issues are minor, but they are constant, annoying, and hinder me in ways I don't like to admit. I'm not on disability and would not qualify. CD4 has never been a definer for Social Security disability; it has to be by opportunistic infections, or some combination with mental health.
So, was this focus group helpful? I hope so. There has been a lot of progress with the meds for sure. But some of us are not able to use what is coming out. There is a lot of talk about a cure, but what will it look like? I don't think I'll see a cure in my lifetime. But I do expect to live a full lifespan. Any possibility of my acceptance into a study for a cure is improbable and risky.
My search continues. Where do I continue to make a difference with this disease now that I no longer work in the field? One way is through writing. My book of poetry about HIV/AIDS, including poems about personal experience and work experiences, has found a publisher, and will be available soon. That is a huge coming out. So perhaps it will be the best way to enter my next phase. My passion to work with AIDS runs deep, and it's a large stream with many tributaries to step into.
Julene Tripp Weaver worked over 20 years in HIV Services. Her poetry collections include No Father Can Save Her (Plain View Press, 2011) and Case Walking: An AIDS Case Manager Wails Her Blues (Finishing Line Press, 2007). Garrison Keillor featured a poem from Case Walking on "The Writer's Almanac" and in his anthology Good Poems American Places (Penguin Books, 2012). Weaver's poems appear in Anti-Heroin Chic_,_ Riverbabble, River & South Review,_ Red Headed Stepchild_, and_ Cliterature_, among other journals. Learn more at julenetrippweaver.com and follow her on Twitter @trippweavepoet.__