Last November, contributing editor Stephen Gendin wrote in these pages that “because of the choices I made a decade ago, I’m out of options.... I wish I’d been more skeptical back then. I wish the HIV community was more skeptical today.”
Gendin was talking about his decision, back in 1987, to treat his HIV aggressively with pharmaceuticals when little was known about many of the drugs and drug combinations he chose. As a result, today the HIV in his body is so strongly resistant to available drugs that finding a treatment regimen that works has been all but impossible for him.
Meantime, all around him he sees people jumping on one treatment bandwagon or another, usually with little data and even less skepticism.
A dose of doubt is one of the most powerful tools in the fight against HIV. But skeptics are often rejected as pessimists (“too negative”), marginalized as crazies or dismissed as in denial. Yet time and again, the “conventional wisdom,” “standard prescribing practice” or reassuring answers about treating HIV have ultimately been proved, at best, overly optimistic and, at worst, just plain false.
I was skeptical back in 1985 when first prescribed AZT monotherapy (now discredited as dangerous) to treat my then-labeled ARC (AIDS-related complex). I don’t know why I was skeptical. It wasn’t because I had the scientific background to analyze research findings and make an independent, well-informed judgment. It wasn’t because I wanted to make a political statement (other than the one inherent in survival). And it wasn’t because I had a death wish.
At the time, it just didn’t feel right. Instinct. Intuition. Gut feeling. These are words that have little resonance in clinical trials or medical journals, but they are often guiding forces in the day-to-day decisions people make when treating their HIV. They should be listened to closely.
Today we have more scientific information than ever. But despite all the new drugs (and another 124 new HIV-related medicines and vaccines in clinical trials or under FDA review), we have no less reason to be skeptical.
Many activists and clinicians should have been more skeptical when the “HIV eradication” bait was first thrown our way. But we weren’t. Hopes were raised and then dashed with heartbreaking speed.
The trick is to be skeptical and hopeful at the same time. Skepticism without hope is futile; hope without skepticism is little more than foolish.
No one -- no drug company, activist, researcher, doctor (no matter how much you “like” him or her), clinic, newsletter or magazine -- has all the answers. Skepticism, in my view, is essential to survival.
Enjoy this issue of POZ and read it carefully -- the advertising and articles (including this column) -- with your own healthy mix of hope and doubt.