Published in Positively Aware Jan 2011
Daniel S. Berger, M.D.
We mourn our loss. A great hero in the fight against HIV disease and a great friend to many, Martin Delaney died this morning, January 23, 2009.
Martin Delaney was well known to many people. He was a pioneer and leader, and a key figure within the AIDS movement from the beginning of the HIV epidemic to the present. The important role he played translated to the saving of many lives from HIV and AIDS. Besides his numerous and important accomplishments, he touched the hearts of almost any HIV-positive person he ever came in contact with.
It is exceedingly rare for someone who is not HIV-positive to completely and deeply understand what it is like to be infected. Marty was one of the few people who understood how HIV sufferers felt and what they had to deal with, without ever having the disease himself. It is also rare for someone who is HIV-negative to become an AIDS activist, let alone have the passion that Marty exhibited, combined with the tenacity and determination to accomplish as much as he did.
I first met Marty 22 years ago, and soon thereafter I had the good fortune of spending three to four days and evenings with him and Jim Corti in Ft. Lauderdale, talking non-stop about AIDS politics and treatment philosophy. Looking back, that time with Marty became one of the most important experiences of my life; its effect lasts to this day. Marty impressed me with his seemingly endless energy and efforts to get access to medications for people who needed them most, and his steadfast resolve to continue fighting, while considering different approaches.
Many times we talked about absolutely everything, including the important players in government and industry, which treatments were promising and not, how to lead the community and organize, and how to be objective while being activist-minded. Marty was the architect of various research agendas and was one of the key individuals responsible for helping create the “expanded access programs” for HIV drugs, which eventually became official policy. Marty was one of the greatest influences on my approach to building a research and treatment clinic. He gave me the courage to run contrary to the daily currents and bureaucracy, for which he himself was well-known. As a result, I have conducted every expanded access program ever available and more than 150 clinical trials. Marty’s influence was clear. His picture has always been on the wall behind my desk.
During the early, dismal years when PWA’s (People with AIDS, as they once were known) were so very sick, Marty was making runs across the Mexican border to bring ribavirin into the U.S. for his HIV-infected friends, and doing whatever was needed to help people survive. While Marty himself was not infected with HIV, he was constantly involved in trying to save the lives of those who were. Quickly becoming a public figure, he worked behind the scenes with officials and consistently urged that change be made with rapid speed; so that many infected individuals would not die needlessly. He was involved in smuggling medicines into the U.S., and worked with Dr. Larry Waites in bringing national attention to Compound Q, a Chinese antineoplastic drug that had anti-HIV activity. This story was featured on a nationally televised special with Charlie Rose. He was often quoted in The New York Times and featured on many news and television interviews. He worked tirelessly with buyers clubs to obtain treatments that were not yet approved in the U.S. Later, he challenged drug companies on the pricing of HIV-related medications, and constantly worked to change government policy so that more people would have access to treatment.
Marty held regular educational meetings in San Francisco, and tirelessly spoke at educational seminars and meetings around the country, counseling countless people. In 1992, I arranged to hold a large community forum with Marty and myself, after attending a recent World AIDS conference. In a prior professional life Marty had taught public speaking, and I learned a great deal from his easygoing, simple, straightforward style. Our first forum together, held in the ballroom of the Belmont Hotel (located at Belmont and Sheridan) was a milestone for the Chicago HIV-positive community. It was attended by more than 400 people, and it was immediately apparent that all participants gained new hope and courage. A great deal of important information and education was provided on new antiviral research and how to deal with AIDS complications. That evening and later on he would encourage patients to learn what was available, and to take the initiative in discussing this openly with their doctor. Marty would say that if their physician was not amenable to being aggressive, then it was time to look for someone else for treatment. It was the first of 14 yearly updates that he and I conducted together in Chicago. These became extremely popular, and quite often a patient would inquire about when the “next one” would be scheduled.
Marty’s yearly visit to Chicago was always a highlight for me because we’d spend some extra time together. Whenever we’d go out to eat, it was often to a restaurant in the community where we could “boy watch,” while we discussed AIDS politics, treatment, research, and also gossip.
Marty was outspoken and not afraid to speak his mind, doing so without hesitation. To me, whenever Marty was outspoken and critical, which was not rare, he was never wrong. I marveled at his audacity. He often criticized the “system” and sometimes criticized pharmaceutical companies for their marketing approaches and pricing. I learned to maintain this sense of urgency from him, and when I was challenged for being outspoken or for a particular treatment approach, Marty would come to my aid. He was always insightful about evaluating results of HIV research, which oftentimes contradicted pharmaceutical company conclusions. I can still hear him say things like, “These pharmaceutical companies always say that.” Although Marty did not hold a degree in medicine, he could converse with the most respected researchers on a very high level, and often interpreted results of technical research without difficulty.
On a Friday in 1996, Marty and I were both going to Washington, D.C. for different FDA Drug Advisory Committee meetings. Marty was present for the meetings discussing the approval of Norvir and Crixivan, and I was going to the FDA’s Endocrinologic and Metabolic Drugs Advisory Committee to testify in support of Serono’s human growth hormone for AIDS wasting. We met up to talk after both meetings concluded. While Marty recounted the unanimous vote for the approval of the two protease inhibitors, my committee voted 7-6 against approval of growth hormone treatment, which we felt was saving countless lives of people affected with wasting. During those early days, AIDS activism was made Marty Delaney-style. He immediately knew how to mount pressure on the FDA. Behind the scenes, there became a focused drive that compelled the FDA into granting accelerated approval despite the committee’s vote against it; little did many know about the efforts of Marty as well as other activists including Bill Thorne and Jeff Getty of ACT UP Golden Gate (now known as Survive AIDS), Treatment Action Group (TAG), and AIDS Project Los Angeles.
Despite our geographical distance, we made a point of talking by phone on a regular basis. I had visited him many times in San Francisco, and we always made a point of doing dinner during many of the major conferences. During one conference in Amsterdam, we both coincidently bumped into each other at the same boy strip bar, and we laughed so hard that night.
Marty was one of the few AIDS activists that rubbed shoulders with the likes of Robert Gallo, the co-discoverer of HIV, and Tony Fauci, Director of the National Institute of Allergy and Infectious Diseases (NIAID), on a regular basis. He understood government politics and knew how to maneuver among policy makers. He knew everyone in industry and was well respected throughout. As founding director of Project Inform (1985), he was instrumental in leading national HIV treatment, policy, and advocacy until 2008, but continued being involved and working on other AIDS-related projects until his death. He founded the Fair Pricing Coalition, which works on drug pricing issues with pharmaceutical companies in the field of HIV/AIDS and hepatitis, and was a member of the AIDS Treatment Activists Coalition (ATAC). He was also a member of NIAID’s National Advisory Council from 1995-98, as well as numerous other committees and boards, and was recently honored with the NIAID Director’s Special Recognition Award for his many contributions in the fight against HIV/AIDS. Without Marty, many individuals would have died long ago.
Over the years, it always impressed me how Marty had a knack for making any HIV-positive individual feel hopeful. During many community meetings, individuals would come up to him for advice on all sorts of HIV-related problems, sometimes dismal, but they’d come away feeling better and more optimistic. He always made time for everyone. I do not exaggerate when I describe Martin Delaney as being something of an angel on earth. He had the biggest of hearts. If there ever was a true saint, Marty is one. He was a true hero and I am blessed to have known him and for him to have been my friend. I, and countless others, will miss him dearly.
Daniel Berger is Clinical Associate Professor of Medicine at the University of Illinois at Chicago, and founder and medical director of Northstar Medical Center. He serves on the Medical Issues Committee for the Illinois AIDS Drug Assistance Program, and is a member of the board of directors of AIDS Foundation of Chicago. Dr. Berger has been honored by Test Positive Aware Network with the Charles E. Clifton Leadership Award.