Lights, Camera, Activism!

by David Waggoner

[dropcap]”J[/dropcap]ust the Two of Us” is a song performed by Grover Washington, Jr., and the latest inductee into the Rock and Roll Hall of Fame, Bill Withers (who also wrote this 1981 classic radio staple). It’s a song I can’t get out of my head as it reminds me of the two weeks recently spent with my mom. It was definitely a time of bonding: She was with me the whole time in the hospital while I was recovering from a mild stroke. My mom’s eighty, but it was as if I were her baby all over again. It’s this dedication that we as adult children take for granted—especially when living daily with a serious illness such as HIV/AIDS.

Although we’re not quite sure what caused the stroke, some of my doctors pointed to the side effects caused by first-generation HIV medications: high cholesterol, high triglycerides, which put the body at greater risk for diabetes, stroke, heart disease, and vascular complications. Considering the mis-dosing and the resulting toxicity of the pre-HAART era, I am very alert to the fact that HIV meds have vastly improved. When my AIDS doc paused on her rounds in the stroke unit to point out to me, “don’t miss a dose; because HIV will kill you if it goes untreated,” I listened. I listen more carefully now than twenty years ago when I would sometimes skip doctor’s appointments.

Why am I better at adherence now? I have more hope, simply put. With the next-generation drugs, individuals very often have the time to figure out which regimen works best for them if they hit a snag with side effects or resistance. But time is of the essence. If you don’t know your status, you can’t make that choice. If you do not know you are positive, you cannot start treatment early, and fare better healthwise, as interim results from the START study suggest. But the question of “when” always comes with a footnote of warnings.

I’m sure all of us have heard the warnings on television ads for nearly every direct-to-consumer medicine that’s out there; that’s the state of modern medicine—the weighing of risk vs. reward. But for so many HIV-positive baby boomers (my generation), it’s not an easy choice: Go without the meds in order to go without the side effects or take the meds in order to kill the virus. Such is the quixotic miracle of modern AIDS medicine: Do no harm but keep the patient well-informed about better diet, more exercise, and keeping regular appointments with your AIDS doc.

Fortunately, many of today’s anti-HIV meds cause less harm than the Model T versions that I took several decades ago. This month’s cover story, Peter Staley, was one of the earliest AIDS activists to actually get the U.S. government to speed up the approval process of life-saving HIV drugs. If it weren’t for Mr. Staley and his Treatment Action Group, also known as TAG, we might still be dying both in the hospitals as well as in street demos. His efforts to organize massive direct actions was what got the FDA, the CDC, and the gay community empowered to take on the lethargy and the apathy that was threatening the lives of millions around the world. In Lester Strong’s interview with Mr. Staley, we find out what originally motivated the AIDS activist: “It’s the role of any vibrant civil society to actively speak out. People live in their own world and sometimes need to be shaken out of their complacency. They need to be pushed out of their comfort zones.” As a mover and shaker, Peter Staley brought an earthquake to New York City as well as the corridors of power in Washington. As Staley succinctly states: “We had to make [Americans] uncomfortable with what the country was doing, which was letting thousands of its owns citizens die because of neglect.” Well said.

Others in this issue are raising awareness and taking pride in being part of a substantial civil rights movement. Columnist Keiko Lane reminds us as we celebrate Pride to practice self-care as part of our embodied survival in a society that oppresses us. Antoine B. Craigwell also promotes self-care with his organization, Depressed Black Gay Men. Artist Linda Stein, with her armor-like sculptures, offers new visions of self-empowerment. As the drugs target each step in the HIV replication process, so too must we approach AIDS activism from every angle, as we minimize the risk and maximize the reward.


savid-sqDavid Waggoner is Editor-in-Chief and Publisher of A&U, the first national HIV/AIDS magazine.