(The HIV community was dealt a sad blow this week when it was announced that the iconic non-profit HIV treatment advocacy organization, Project Inform, will end its programs. Project Inform’s Director of Research Advocacy, David Evans, has been working with the organization in various capacities for the last 27 years. In this message shared with My Fabulous Disease, David reflects on Project Inform’s legacy and on the influence of its legendary founder, Martin Delaney. We must all honor this legacy by ensuring that HIV treatment advocacy remain at the forefront of our movement. – Mark)
It’s the end of Project Inform as we know it…but I still feel the same unflagging determination to break the back of this epidemic as I did when I first met my mentor, Marty Delaney, nearly three decades ago.
When I first volunteered for PI in 1991, a group of brilliant self-taught HIV scientists, including Brenda Lein, Ben Cheng, and Marty, of course, patiently trained me in activism and advocacy. They answered every question I asked, showed me various medical journals, and taught me to distinguish between genuine glimmers of hope versus junk science. They set an example for me in what it means to serve—to educate and mentor others.
The need for organizations like Project Inform, for its HIV and Hep C programs, and for the people who do this work is undiminished. We need a vaccine and a cure for HIV. That will only happen with equal participation and leadership from every affected community. Short of that, we need accessible medications for prevention and treatment that are acceptable to every single person living with HIV.
I’m proud to have worked side by side with so many at PI, including Alan McCord, Jude Leahy, Anne Donnelly, Andrew Reynolds, Ryan Clary, and Emalie Hurieaux, just to start.
Marty was a brainy, imaginative, resourceful activist. He cut his teeth as a labor negotiator in 1970s Chicago, which made him both a skillful diplomat and a formidable foe with no patience for irrational and unnecessary obstacles. When his patience was severely tested, his crankiness and disdain could be surly, but it was exceeded by his big heart. Marty took calls from people in dire medical situations at all hours.
Even off the job, Marty pushed the limits. In the early 90s, we drove across the Big Island of Hawaii. Marty insisted we take the most direct route through the forbidden Pohakuloa Military Training Area, rather than the much longer coast drive.
I was reluctant, but Marty coaxed me forward past the warning signs. Soon enough, an army helicopter gunship strafed us just yards overhead, rattling our rented jeep with the rotor’s downwash. The pilot then turned to hover, facing us, just 10 car lengths away.
It was a lopsided standoff, but no matter. Marty insisted that we call their bluff. We did and we won. It was a small triumph, an instructive moment, and it meant the world to me to share that with him.
I rarely heard Marty use the F-word, but I think his life was defined by a fuck you attitude toward impractical rules and conventions that slowed progress. I remain inspired and grateful he let me see all of that—the whole, real Marty.
Marty never imagined an everlasting, always expanding organization. And still, these changes are hard, some are heartbreaking. It’s sad to say goodbye to our team and to this historic project. But it was always about the mission. We’re not there yet, so the work continues. We the staff will support each other in making it happen.
I’m beyond grateful to all those who’ve mentored and inspired me, who’ve been partners in this work. My list is enormous and spans from my earliest mentors like Peter Staley, Mike Shriver, Tim Horn, Lynda Dee, JD Davids and Moises Agosto, to splendid friends and colleagues from recent years, including Danielle Campbell, Karine Dube, Judy Auerbach, Morey Riordan, and Shannon Weber. Finally, I am deeply indebted to my compatriots: Michael Anderson, Brenda Laribee, Joanne Kay, Louis Schilling and Tyrone Smith.
Most of all, I thank my husband, Josh Tager, whose activism matches Marty’s in brilliance and ferocity, and who has inspired me to be a fighter since I saw him across the room at a frumpy New Year’s Eve dance in 1991.
Finally, a famous quote by Oliver Wendell Holmes, captures how I feel right now: “We have shared the incommunicable experience of war. We have felt, we still feel, the passion of life to its top. In our youths, our hearts were touched with fire.”