"If we fail to bring in new people with new ideas, everything we’ve done will turn to dust."
Will we urge authorities to understand that in a crisis, a higher tolerance of risk is sometimes warranted? Will we demand early access, fast access, and expanded access for those who need it most?
by Mark Hubbard
I spent last weekend in Fort Walton Beach, Florida, attending one of America’s best consumer-focused HIV treatment and prevention conferences, Positive Living. On Saturday, at the same time a San Francisco memorial was being held for Martin Delaney, we were holding our own on the east coast. Martin had been part of the conference since before its inception twelve years ago, delivering a treatment update every year but one. Various members of the conference faculty lit a candle, came to the podium, and shared their memories. Here are mine.
Before I knew Martin, I knew his work. Before daily wire stories about AIDS, before cable news networks, cell phones, the internet, and LOGO, there was Project Inform. Shortly after my 1987 diagnosis, someone at a support group handed me a dog-eared photocopy of a PI publication. I took it home, read it, and with the same trepidation I’d experienced as a southern suburban adolescent ordering the Milwaukee-based Gay People’s Union News, I subscribed. Like the GPU News, the sometimes sporadically published updates from San Francisco came in discrete plain wrappers. I came to depend on the discussion papers, fact sheets, PI Perspectives, and special alerts as my primary source of information about HIV and AIDS.
The January news of Martin’s death sent me digging through my stacks. I ended up sitting cross-legged on the floor, thumbing through a pile of Project Inform publications circa 1988 to 1996. They were brilliant and groundbreaking. A 1988 discussion paper gave advice for both patients and doctors on just how important it was to build a cooperative relationship; a 1989 paper suggested an informed, cogent treatment strategy - before there was any real treatment.
Martin’s hand in them couldn’t be more obvious. Urgency was the theme. Issue after issue, he pressured authorities to temper bureaucratic regulations with common sense and urged them to understand that in a crisis, a higher tolerance of risk is sometimes warranted. Repeatedly, he demanded access – early access, fast access, and expanded access for those who needed it most.
Under Marty’ leadership, Project Inform itself took risks. It conducted its own research, constantly promoted transparency, and when the facts warranted, adjusted its positions. When the first Bush administration made false claims regarding the amount of funds invested in AIDS research, for example, a white paper succinctly debunked those claims. In the mid-90s, as real treatment (protease inhibitors) appeared on the horizon, each issue provided an up-to-the-minute report. Highlighted passages and a notation in the margin - MARK =>~160 T4 cells - recorded my own worries during a time when I and others contemplated our options and ultimately, our futures.
Ironically, the first time I talked to Martin, I was quite upset with him. I had gotten involved with research advocacy and in 2001 was encouraged to bring him to Nashville to do one of his famous treatment updates. Striving to overcome my inexperience with sweat, I created and distributed 70 publicity packages, 2000 handbills, 450 letter-sized posters, and over 200 emails. The day before the event, I got a call from the Project Inform office. Martin had been invited to appear on Nightline (the world had apparently just realized it was the 20th anniversary of the discovery of HIV) and wouldn’t be able to make it.
I freaked. I composed a rather ballsy email to Project Inform staff reminding them that they had long since made a commitment and that we hadn’t promoted Project Inform so much as Martin Delaney. Laying it on thick, I reminded them that I, a disabled person with AIDS, had worked my ass off to promote Marty’s appearance at our grass roots event. Now it was being sacrificed for the sake of a high profile, big media appearance. Exactly how had they overlooked the 20th anniversary on their calendar? Couldn’t Martin be interviewed remotely from the Nashville network affiliate?
Before I could hit send (and I did eventually hit send) the phone rang. It was Martin calling personally to apologize profusely. He explained that he had a long history of appearing on Nightline and that for the sake of the movement he couldn’t miss an opportunity to keep AIDS in the public eye. He promised to send another staffer for our event and to come later in the year himself at no cost.
I don’t think I realized until the next Positive Living conference what an impression I’d made. When I mentioned a possible return to Nashville, Martin assured me that if I asked, he would find a way to come. And that’s how Martin was. In his eyes, my passion and commitment were more important than my lack of training and inexperience. I’d like to think he recognized the soul of an advocate – one who cared about science. His mission was to cultivate those individuals whenever and wherever he found them.
Later that year, during the Q&A part of his appearance, I asked about that. Did he think it was important to get younger people involved? He did indeed. “We need a new generation of activists,” he answered. “If we fail to bring in new people with new ideas, everything we’ve done will turn to dust.”
A few months ago I sat in a local theater watching the feature film Milk. I realized that many around me had never seen or even heard of The Life and Times of Harvey Milk. Had the newer film not been made, some might never even have heard of Harvey. I also kept thinking about Martin’s death. On Oscar night I was moved by the acceptance speeches, especially the one made by the talented young writer, Dustin Lance Black. With all my heart and soul I hope that someone – maybe even Gus van Sant – will make another hugely important movie: Marty.
The elements are all there – a historic challenge, passionate men and women, drama, conflict, and a charismatic and incredibly brilliant leader. And it can’t happen too soon. As the roll-out of expensive and potentially controversial biomedical HIV prevention tools looms, I wonder whether we too will insist on being heard. Will we urge authorities to understand that in a crisis, a higher tolerance of risk is sometimes warranted? Will we demand early access, fast access, and expanded access for those who need it most?