Martin Delaney, who in 1985 founded Project Inform, died on January 23, 2009 from liver cancer in San Rafael, California. He was 63.
I first met Martin Delaney at an AIDS, Medicine and Miracles (AM&M) conference in the fall of 1993. I was four months into my diagnosis as HIV+. Those were dark times of too many memorials and very little hope. Everyone seemed to have a different idea about how to treat your virus and how to possibly stay alive as long as possible. Ozone therapy, silver nitrate, hydrogen peroxide IVs, ancient rituals, Compound Q or bitter melon were just a few. I was calling the 1-800-CDC number a lot, trying to find out about what was true and what wasn't. After the third time of being referred to Project Inform "for that information", I realized I need go no further for my questions for myself and for my young girl friend, Dee Dee, who was diagnosed with AIDS and 80 T-cells. We were desperate to find something that would give us hope, a very rare and precious commodity in those days. And then Martin came to town with AM&M to deliver his What Holds Promise talk. He spoke nonstop for an hour-and-a-half displaying a mastery of everything from epidemiology to current treatment to what was coming down the pike, to what still needed to be developed. Then he spent an hour answering everyone's questions and fears, never shy to be direct, factual and always compassionate in his reply. I was shocked to find out that he wasn't a doctor or a researcher, or even a scientist, he was a self-educated activist. Martin left us that day with the first real ray of hope we'd had, and a yearning to learn more for ourselves and for our friends. That was the effect that Martin had on people. He left you hungry for knowledge and empowerment.
After Dee Dee died in 1996, I went to work for the People with AIDS Coalition Colorado. One of my duties was to put together monthly summaries of what was going on in the HIV world for our publication "Resolute!" It seemed like every month, Martin and Project Inform were at the forefront of much of what was happening, whether it was patient rights to access, clinical trial design, drug pricing, world access to meds, or government and industry research. Not only was he leading the charge on many fronts but Project Inform was disseminating the information back to the community at amazing speed. Over the years I saw Marty at many conferences, and PWACC brought him to Denver on several occasions for community forums. The last time he came to town I drove him back to the airport and we got a chance to chat. It was not until then that I learned about his battle with chronic Hepatitis B in the 1970s and the resulting liver damage and painful neuropathy that he lived with every day. None of that, however, deterred him from his exhaustive schedule of commitments to carry on the work he had begun.
I called him last summer to see if he could present at the 20th Anniversary AM&M in late November. He was in some airport heading for another meeting in Washington DC. He said he'd love to join us and would call back to confirm. When he called back he said he was sorry, but was already double-booked that weekend on both coasts. That weekend turned out to be eight weeks before his death.
Martin's dedication to the HIV community was unmatched. He initiated community-based clinical trials by smuggling in medications from Mexico. He pushed for quicker approval of promising compounds and demanded that Parallel Track Clinical Trials be established so that the sickest would have access to cutting edge therapy. He kept new medication prices lower by forming the Fair Pricing Coalition. He formed the most reliable source of information about HIV and AIDS in the world. The accomplishments of his activism over the last 24 years were of epic proportions, and he and Project Inform never stopped pushing for a cure.
Robert Gallo, co-discoverer of the HIV virus, wrote the following in a letter to Martin on January 22: "If -- as in sports -- we had a most valuable player award for an individual's overall contributions to medical health and specifically for contributions to our advances over one of the greatest epidemics in history, it would not be to a scientist, scientific administrator or political leader. Instead it would be to an activist from San Francisco, Martin Delaney. Your activism was central to the promotion of the science that led to our advances, and your educational work and administrative leadership in Project Inform led to saving countless lives."
Marty's service was held March 14 at the Eureka Valley Recreation Center in the Castro in San Francisco. It was the very same hall where some of his first town hall meetings had taken place 24 years before. The San Francisco Gay Men's Chorus brought that point home with an original song called In This Very Room. We heard from Anthony Fauci as well as just regular folk whose lives had been dramatically altered by Martin's efforts. We were all left with a feeling that a major chapter in the history of AIDS had just been closed and we would never see anything like it again. As I was leaving the service, I wanted to sign the guest book and leave my respects. All I could think of to write was "Thanks Marty from all of us for saving our lives. Thanks."
This article was provided by Being Alive. It is a part of the publication Being Alive Newsletter. Visit Being Alive's website to find out more about their activities, publications and services.
Add Your Comment:
Internet search results. Be careful when providing personal information! Before
adding your comment, please read TheBody.com's Comment Policy.)