May 2, 2011
Innovator, rule-breaker, POZ founder, senior adviser to the Positive Justice Project combating HIV criminalization, positive for 31 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?
Overall, I would say the best advice I've gotten is to be skeptical, especially of that which is presented as a conventional wisdom, beyond question or non-debatable. Those are usually the areas where it is especially important to have a broad view. And, more specifically, the message from Michael Callen’s book, Surviving AIDS, about the characteristics survivors shared (belief in the possibility of survival, finding purpose, seeking health as an ongoing journey not a destination, etc.) was extremely powerful and important to me.
What change or development in your treatment for HIV has most affected your life—for better or worse?
Combination therapy, without question, as I would have died without it. Overtreatment, especially with Viread, had the most negative impact.
What is your refuge from thinking about and dealing with your health?
Thinking and dealing with other people’s health, or more generally, being of service—whether through activism or providing a friend a shoulder to cry upon or whatever—is what gets me out of my own issues and concerns. My refuge, such as there is one, is reading.
What has been your major economic challenge since testing positive?
HIV is expensive, whether one is insured or not, including in how it affects one’s ability to earn a living.
What one thing has most aided your survival, and how difficult is it to overcome stigma?
In addition to Michael Callen’s book, which I’ve noted, the role of Joe Sonnabend, MD, in my survival, directly and indirectly, is almost impossible to overstate. It was obvious early on that those with strong emotional support systems were living longer. Without my sister Megan, dear friend Xavier and others’ support over the years, I would not have lived long enough to benefit from combination therapy. Overcoming stigma is a challenge that never ends, but one’s ability to cope with it is directly related to how empowered a person is. For those trapped in multiple disenfranchising burdens, like racism, poverty, incarceration, addiction, mental illnesses, etc., overcoming stigma is much more difficult. HIV-related stigma exists less often in isolation these days; it is almost always part and parcel of some other societal bias.
Do you think there will be a cure in your lifetime—and if so, will you benefit from it?
How does one define cure? For someone who was so close to death 15 years ago, like me, it would be arrogant not to consider my survival a function of something that resembles a cure. But do I think there will be a point when I can get an injection or something and then never have to think about HIV again? No, I don’t think that will happen in my lifetime. There is vastly more profit in treating HIV—for as long as possible—than there is in a cure that renders treatment irrelevant.
What advice would you give to someone newly diagnosed?
Read Michael Callen’s book, Surviving AIDS. Study the history of the epidemic and, specifically, the self-empowerment movement for people with HIV. Read POZ, both today and go back and read the early issues in the mid ’90s for an historical perspective that informs contemporary issues and today’s treatment decision-making. Fall in love. Find a way to be of service to others. Be kind to all.
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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