May 2, 2011
Ambassador of activism, UNAIDS adviser, cofounder of ACT UP New York and Health GAP, positive for 30 years.
June 5, 2011, marks 30 years since the first published accounts of what
became known as AIDS. For this anniversary, we asked 31 long-term
survivors who’ve appeared in POZ what
moves and sustains them and whether they think they’ll live to see a
cure. Why 31? One for each year, and one more for good luck.
What’s the most helpful thing anyone has said to you over your years living with HIV?
“You know, Eric, it is highly likely that not everyone will die from HIV. Convince yourself you can survive this and you might just survive HIV.”
What change or development in your treatment for HIV has most affected your life—for better or worse?
Deciding to manage my health. Instead of being a passive participant and having my HIV care prescribed to me, I decided to participate in managing my health care in partnership with my doctor.
What is your refuge from thinking about and dealing with your health?
Many things help me escape my illness. Activism through ACT UP, Housing Works and Health GAP is key. Sex is really important for this and other reasons. So is walking my dogs and going to the gym, theater and movies. Check out The Book of Mormon or Priscilla Queen of the Desert on Broadway.
What has been your major economic challenge since testing positive?
Planning for my financial future and for retirement has been the hardest. While I fought to survive HIV, deep down I did not think I would live to retire, and I did not plan my finances more than one month ahead. Now I fear I will have to work until I drop dead!
What one thing has most aided your survival, and how difficult is it to overcome stigma?
Not giving a flying F has been what has most aided my survival. “Take me as I am or f--- off” has been my motto. Emotional support and care and love from friends are important. As for stigma: Stigma kills, but I have tried to turn stigma back against the haters.
Do you think there will be a cure in your lifetime—and if so, will you benefit from it?
I think there needs to be a renewed vocal demand for cure research, which has disappeared from the global agenda. I am skeptical that we will see a cure in my lifetime, simply because too many pharma companies are making too much money maintaining the relative health of HIV-positive people to ever allow a cure to be found!
What advice would you give to someone newly diagnosed?
I would say, “Decide to live a normal life span and manage your health, your nutrition, your exercise programs and your sleep so that you do so!” Oh yeah—“And have a lot of great sex! As often as possible. It gives you something to live for!”
to read this article as it
appeared in the June 2011 issue.
read more of our "30 Years of AIDS" coverage.
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