May 2, 2011
Jazz pianist and composer, coma survivor, AIDS fund-raiser, positive for 25 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 change or development in your treatment for HIV has most affected your life—for better or worse?
I have been on “salvage therapy” for many years, and fortunately, new medications have come along just as I was crashing on a particular regimen. Not all of them have been easy (Fuzeon was the worst), but I am in good clinical shape, with side effects managed as well. My CD4 count has not been above 200 for many years, but my viral load is undetectable, so the CD4 cells are doing their job, the virus is neutralized, and HIV and I are at a standoff.
What is your refuge from thinking about and dealing with your health?
Creating and performing music, as well as teaching gifted young musicians.
What one thing has most aided your survival, and how difficult is it to overcome stigma?
It has not been hard for me to overcome stigma. I came out about my status and sexual orientation in the mainstream media and music press in 1993, and I have been a fund-raiser (through concerts and CDs) and activist ever since. Even though I am in a field of music—jazz—that has a reputation for being macho and homophobic, when I was near death in 2008 the whole community was very caring and supportive.
Do you think there will be a cure in your lifetime—and if so, will you benefit from it?
I am certainly glad that “a cure” is being talked about. I am on a six-antiretroviral regimen and take numerous pills to counteract the side effects (high cholesterol, metabolic and blood sugar issues, high triglycerides, depression, etc.). Yes, I am “managing” the disease, but I am still hopeful that there will be a (probably novel and unexpected) way to disarm or neutralize the virus, providing a cure. We must not give up on this! HIV meds are not easy, and they are unaffordable in most of the rest of the world.
What advice would you give to someone newly diagnosed?
Talk about it. The price for being in any kind of closet is high. In the early days of the epidemic, I knew many people who kept this information from their families but assumed that if things got bad they would be supportive. And in many cases, their families (and sometimes their friends) deserted them in their hour of need. So it’s best to know where you stand with the people in your life—and whom you can count on if needed.
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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