Life and Work of an AIDS Activist
The world lost one of the pioneers of AIDS activism when Project Inform founder Martin Delaney died of liver cancer in San Rafael, California.
By Mark Harrington
Fighting for people with HIV until the very end of his life, Martin Delaney embodied the qualities that have come to define AIDS activism:
- a willingness to challenge authority
- a belief that science is for people, not for scientists alone
- a belief that ordinary citizens have a right to scientific information, to participate in research (or not), and to access experimental treatments when there are no approved treatment options or when approved treatments are failing
- a willingness to listen to opposing views, and sometimes to change one’s mind in light of changing circumstances or emerging new data
- a willingness to compromise where possible without compromising essential rights
- a fierce, dogged, and relentless tenacity that would not rest until the goal was achieved
I first worked with Marty in the spring of 1989. It was the period when ACT UP/New York’s Treatment and Data (T+D) Committee was sending monthly delegations to hearings of the National Committee to Review Procedures for the Approval of New Cancer and AIDS Drugs, a panel appointed by President George H. W. Bush and chaired by Louis Lasangna to look at ways to speed up approval of AIDS and cancer drugs. At the same time, Marty and his ally, attorney Jay Lipner from the Lambda Legal Defense and Education Fund, were trying to negotiate with the Food and Drug Administration (FDA) not only how to speed up drug approvals but also how to provide broader access to experimental treatments when they were still in clinical trials.
Jim Eigo from ACT UP’s T+D Committee began writing down the precepts of what would become Parallel Track, a proposal originally made by Marty after long conversations with Lipner and Anthony S. Fauci, the director of the National Institute of Allergy and Infectious Diseases (NIAID). Fauci was also seeking ways to reduce the pressure on the NIAID-funded AIDS Clinical Trials Group (ACTG), which could not possibly enroll all the nation’s people with AIDS in its small, slow, and almost paralyzed clinical trials network.
Delaney, Lipner, and Eigo were the key community activists in leading the negotiations with the FDA and with NIAID, and later with the drug company Bristol-Myers; these negotiations led to the Parallel Track program for didanosine (ddI), the second AZT-like drug to make its way through clinical trials. The ACTG was unable to enroll more than a couple thousand people with AIDS into its studies of ddI, while around the country, tens of thousands of people with AIDS were failing on or intolerant to AZT, the only approved AIDS drug at that time.
With coordinated pressure from Project Inform, ACT UP, and other activist organizations, as well as from Fauci at NIAID and from Sam Broder, director of the National Cancer Institute, the FDA allowed ddI to be released on a Parallel Track program in the fall of 1989. Eventually over 35,000 people with AIDS received ddI through Parallel Track before the drug was approved by the FDA in late 1991. Since the drug was eventually found effective and approved, in retrospect the Parallel Track program is likely to have saved or extended thousands of lives.
When Treatment Action Group first split off from the T+D Committee and became an independent organization, we collaborated closely with Marty and with Jesse Dobson from Project Inform on what became the Immune Restoration Think Tank (IRTT) series of workshops to expedite research on restoring the immune system damaged by HIV. Jesse died of AIDS in 1993, but Marty, along with Brenda Lein, kept the IRTT workshops alive until the advent of highly active antiretroviral therapy put a temporary eclipse on immune research.
Marty and Project Inform were also key players in supporting what became the FDA’s program to expedite drug approvals based on changes in surrogate markers such as CD4 counts and, later, HIV RNA (viral load), thus shortening the duration of pivotal clinical trials and hastening FDA approval of a new wave of highly active antiretroviral drugs.
Soon, the treatment landscape changed radically in the United States and other developed countries; AIDS death rates plummeted by over two-thirds and a new era of care for HIV was inaugurated.
In the late 1990s TAG worked closely with Marty and his colleagues on getting the FDA to hold hearings to emphasize the importance of studying new drugs in salvage (e.g., multidrug-experienced) populations. As a result, most of the new anti-HIV drugs approved in the past decade—tenofovir, FTC, T-20, tipranavir, darunavir, raltegravir, and maraviroc among them—were first studied and first approved in salvage therapy populations. The result was, again, the prolongation or saving of thousands of lives.
TAG also worked closely with Marty, with Project Inform, and with Linda Grinberg and her Foundation for AIDS and Immune Research (FAIR) on a series of workshops on the role of treatment interruptions in HIV therapy. Clinical trials stimulated by these meetings later demonstrated that treatment interruptions were unsafe.
The last time I saw Marty in person was in February 2008 at the 15th Annual Retrovirus Conference in Boston, where we met to plan a workshop on eliminating HIV persistence and eradicating HIV infection, which TAG cosponsored with amfAR, FAIR, and Project Inform in November 2008.
By the fall, Marty was too sick to travel. After beating hepatitis B infection in the 1980s and surviving a quadruple bypass earlier in this decade, his two previous conditions had conspired to produce a virtually untreatable hepatocellular carcinoma that was only finally diagnosed in late 2008. The location of the tumor, its spread, and the prior cardiovascular disease made getting a new liver difficult if not impossible. Marty called me in early December and reported on his condition. He said, “I’ve survived two lifethreatening diseases already, but I’m not sure I’ll be able to make it this time.”
As always, he faced the situation with courage and honesty. This time there were not a lot of treatment options. In his last weeks he was surrounded by his family and by longtime colleagues and friends such as Brenda Lein, Anne Donnelly, and David Evans. Over Christmas he even made it to Hawaii for a vacation. Upon his return to California he entered the hospital but soon returned home. I flew out to visit him on Friday, January 23, but it was too late. By the time I landed, Marty was gone. I spent that evening with his friends and colleagues at the memorial wall at Eighteenth and Castro Streets, where people left flowers, lit candles, hung Buddhist prayer flags, and posted tributes to Marty.
It is too soon to comprehend our loss.