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This week, the AIDS community mourned the death of one of its most beloved and groundbreaking AIDS treatment activists, Martin Delaney. Delaney died of liver cancer last Friday at the age of 63.

Delaney saved an untold number of lives by providing easily accessible information about HIV medication through Project Inform and by negotiating with drug companies and the FDA to change the way medication was approved not just for HIV, but for all life-threatening illnesses.

Delaney provided sorely needed hope and information about treatment options in the early days of the AIDS epidemic. “These were ugly times and Marty was like the messiah,” said Lynda Dee, executive director of AIDS Action Baltimore, who first met Delaney in 1986. “There was no hope. All of the sudden he comes out of nowhere and says what we could do, how we could do it and where we could do it. That’s pretty powerful when everyone around you was dying.”

Delaney’s journey in patient advocacy started in the 1960s when he contracted hepatitis B and was diagnosed with cirrhosis of the liver. He moved from Chicago to California to participate in a clinical trial at Stanford. The treatment was successful (although it led to problems later in life), and his experience advocating for himself as a patient set the groundwork for his HIV patient advocacy on behalf of friends who began dying of AIDS in the 1980s.

Delaney educated himself about the latest HIV treatment options so he could spread the word through pamphlets, conferences, and soon a phone line. “He realized early on that people with HIV needed information to live long healthy lives and that people not infected needed information to stay that way,” said ACT UP Co-Founder Eric Sawyer.

The “Tooth fairy”

In 1984 and 1985, Delaney began making trips to Mexico to smuggle in experimental AIDS drugs for family and friends. Word spread fast and soon he was bringing in medications for dozens of others. With the money he earned consulting for Xerox, Delaney shipped the medication to people throughout the country. To keep his anonymity, he signed all letters “the Tooth fairy.”

In 1985 Delaney founded Project Inform, with psychotherapist Joseph Brewer, as a way of getting people information about up-to-date treatment through pamphlets and a phone line. He called the new venture a “project,” assuming this would be a short-term operation until scientists found a cure for AIDS in five or ten years. “To have Martin come along and put the information in clear and understandable language was quite literally a lifeline for people,” said Housing Works President and CEO Charles King.

Delaney and Project Inform became the go-to place for information about HIV treatment, both for patients and doctors. David Evans, an editor at AIDSmeds.com, worked for Delaney at Project Inform and became a close friend. As an intern, Evans would open the mail to find everything from write-ups of unpublished journal articles to crack-pot theories. “Any time he heard a rumor that a doctor was trying anything, he was out there searching,” Evans said.

One of Delaney’s greatest achievements was persuading the U.S. Public Health Service in 1990 to adopt a policy allowing patients with HIV and AIDS to receive drugs that were being tested for effectiveness and safety—parallel tracking. Although conceived as a response to the AIDS epidemic, the policy now affects people with other diseases.

Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases (NIAID), at first opposed the policy change. He changed his mind after Delaney arranged for meetings for him with gay men with HIV and AIDS who wanted access to experimental treatments. Fauci told the Los Angeles Times, “A lot of activists were promoting it. But it was Marty who convinced me by bringing me face to face with people who actually needed it.” Fauci and NIAID honored Delaney this month with a Special Recognition Award. See Fauci’s tribute to Delaney below:

“A huge heart”

As treatment activism advanced, Delaney continued his efforts, working with pharmaceutical companies both out in the open and behind the scenes. “There were public meetings where other activists were involved, and they would see his role as somewhat limited. But then Marty would call the head of the company and actually get things done,” Evans said.

Delaney was often warning people about medications, and he could be stubborn in his resolve when he thought he was right. When Fuzeon was in phase II studies, both companies and activists thought no one would use the drug because it had to be injected. “But Marty was just adamant, and said absolutely, these drugs will save people’s lives. He turned out to be right. Fuzeon probably saved several thousand people’s lives,” Evans said.

Delaney also spoke at conferences, where he impressed with his ability to synthesize complicated scientific information. One of those people was Nelson Vergel, who saw Delaney lecture at a Houston conference. “He was lecturing about medical stuff and he wasn’t a doctor,” said Vergel, who was diagnosed with HIV in 1984. “That started the fire in my brain that I needed to educate myself. I said, ‘If he can do it, I can do it.’ “ Vergel, a former chemical engineer, is now a member of the AIDS Treatment Action Coalition and lectures about drug treatment throughout the world.

Delaney counseled countless individuals throughout his career. “After a speaking arrangement late at night, Marty would be returning phone calls from desperate strangers who had opportunistic infections,” Evans said. “You wouldn’t realize if you knew him casually, but Marty was a sensitive person with a huge heart.”

To keep up to date with the latest information about memorials for Martin Delaney, go to projectinform.org. E-mails can be sent to Project Inform, and cards can be mailed to Project Inform, 1375 Mission Street, San Francisco, CA 94103.