Paul's POZ Blog

Last night, Project Inform held our first of two events to honor our founder, Martin Delaney. An east coast celebration will be held in Washington, DC next week: http://www.projectinform.org/support/fre.shtml

While dress up events are not exactly my cup of tea (I feel like an impostor when ever I wear a suit), I was both moved and inspired last night. The speakers: Project Inform’s Executive Director, Dana Van Gorder; the founder of W.O.R.L.D. (Women Organized to Respond to Life Threatening Diseases), Rebecca Denison; Marty’s long time friend Bohdan Zachary; Brenda Lein, PI’s former Director of Information and Advocacy; Tony Fauci of DAAIDS, and Marty himself- sounded similar themes of activism in the face of indifference and hope in the face of despair.

Mistakenly, I often think of the days before anti-retrovirals as intractably bleak. People were sick and dying, and there were few tools to work with. The one tool that was there was action. Activism was, in an important and often overlooked way, the first anti-viral.

In their own ways, each speaker talked about the importance of activism, and the role that Marty played in creating and sustaining the AIDS movement. Rebecca talked about receiving Project Inform materials within a few days of her diagnosis, saying those pieces of paper literally saved her life. Bohdan spoke of the underground Compound Q trails that PI was instrumental in (as well as Marty’s role as matchmaker). Brenda- who worked so closely with Marty for so long- pointed to the quality of the people who were inspired to work with and at Project Inform- people like Jesse Dobson and Ben Cheng. Fauci thanked Marty for his candor and sage advice through the years.

For his part, Marty demurred. He spoke of himself as a symbol, representing the work of countless people, many of whom succumbed to HIV/AIDS and many others who survived. He said he was particularly proud of the people like Brenda and Jesse, but also Judy Leahy (my old boss at PI) and Anne Donnelly (one of our policy gurus) who grew at Project Inform to become true leading lights in the fight against this disease.

Two things really stuck with me from last night: the emotional heaviness of the early days of the epidemic and the fighting spirit that grew from it. Several of the speakers were close to tears as they recalled losing literally hundreds of loved ones to HIV. What grew from that despair- as well as the inaction, and outright hostility of the government- was a movement that wouldn’t accept the idea that nothing could be done. Brenda summed that spirit up with her typically mater-of-fact eloquence marveling at Marty’s unwillingness to be thwarted by obstacle: if there was no funding, it had to be found, if there was no political will, it needed to be created…

I have said in this space before that I owe my life to Marty and all of the activists that came before me. The debt of gratitude I owe them helps fuel my work. Their radical idea that non-scientists could not only understand, but also influence and even lead science paved the way for this poor-science-student-college-drop-out to build a career around science and activism.

At the end of her talk, Rebecca spoke directly to Marty and implored him not to go too far away from AIDS. I have no fear that he will. While he has more than earned the right to rest on his laurels and enjoy a quiet and more comfortable life- he won’t. He speaks very little to me about his accomplishments. Rather he talks of the urgent work ahead of us all- from tackling the growing crisis in drug pricing, to ensuring world wide access to HIV drugs, to improving our use of available HIV drugs, to spurring new drug development to pushing for an outright cure.

I hope one day I will retire from HIV work, but only because the work will be done. If and when that day comes, the day when we have eradicated this scourge from our planet, I will raise a toast to Marty, and Brenda, and Rebeca, and Anne, and Tony, and Jesse, and Ben, and Ryan, and Judy and everyone else who played their role, big or small in combating and triumphing over HIV/AIDS.