Important note: Information in this article was accurate in 2008. The state of the art may have changed since the publication date.
Bay Area Reporter - June 26, 2008
Heather Tirado Gilligan
Project Inform, a nonprofit created in 1985, connects people infected with HIV to information and resources to help manage the disease. The agency also was one of the first to advocate that scientists turn to patients as their allies in understanding the disease, rather than thinking of them only as subjects of study.
Delaney is credited with creating these groundbreaking changes in approaching HIV/AIDS in the early days of the epidemic. In perhaps his greatest accomplishment, Delaney conceived of parallel tracks in drug trials.
Before the AIDS crisis, drugs in trials were strictly confined to the enrolled patients. In 1986, Delaney argued successfully that trial drugs should be made available concurrently to HIV-positive patients. Parallel trials are common today in the treatment of serious illnesses, including AIDS and cancer.
Delaney was the force behind the development of parallel tracks, said Dr. Anthony Fauci, director of National Institute of Allergy and Infectious Disease at the National Institutes of Health. Fauci, who appeared in a videotaped message at the event - held before a crowd of 90 in the Green Room at the War Memorial Building - lamented a prior commitment to be abroad that kept him from honoring Delaney in person.
While Fauci received much of the credit in the media for the parallel track concept, he acknowledged it was Delaney's idea, and Delaney's drive, that saw the idea to fruition.
"You have always been an honest broker," Fauci said in his message. "You were never an activist for the sake of being an activist. You always wanted to get the right thing done."
Several people credited Delaney with saving their lives or the lives of their loved ones, both during the tribute and afterwards in private remarks to Delaney.
Rebecca Dennison recalled receiving a packet of information about the disease from her best friend the day after she tested HIV-positive 18 years earlier. The top sheet read "day one," she remembered.
"My best friend came with papers to save my life," said Dennison, who went on to direct Project Inform.
"AIDS organizations were about helping people die," Delaney recounted in remarks at the end of his tribute. Project Inform, he noted, was the first organization founded to help people live.
Living didn't necessarily mean beating the disease and surviving, Delaney explained.
"Some of them said on their deathbed that this was the happiest time of their lives," Delaney said, noting that fighting the disease for themselves and others gave early AIDS activists a life purpose.
Project Inform continues to thrive under Dana Van Gorder, who became executive director of the agency last year. Project Inform's phone hotline gets 400 calls a month, and its Web site gets 350,000 hits a month, from local, national, and international clients, Van Gorder said.
Project Inform was meant to be a temporary service when it was created in 1985, Delaney explained in an interview after the event. Delaney, who created the organization with his partner, Joe Brewer, assumed that government agencies would step in and fill the information and advocacy void.
"And they never did," Delaney noted.
The world was lucky that the disease struck gay people first, Delaney said, citing the compassion and the creativity that characterizes the community and drove response to the disease. The community's response to the AIDS crisis is used as a model in advocacy efforts for other diseases, such as cancer.
Delaney, 63 worked as a fifth grade teacher and a business consultant in the Chicago area before he moved to San Francisco in the late 1970s, seeking treatment for hepatitis B. Delaney was cured of hepatitis in a trial at Stanford Medical Center.
He used his experience as a patient in drug trials as a roadmap in developing his groundbreaking, community-informed response to HIV/AIDS.
"Most of the scientists did not want us involved," Delaney said. "We were not welcomed." He credited Fauci as the person who pressured a coordinated response to HIV/AIDS from the scientific community.
Van Gorder places Delaney as a central figure in the effective response to HIV/AIDS. "He is one of the major architects of the response," Van Gorder said of Delaney. "He is why we have a range of safe drugs available to folks."
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