Martin Delaney, HIV patient advocate, dies

Sunday, January 25, 2009

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U.S. National Institute of Allergy and Infectious Diseases

January 19, 2009

HIV Activist Martin Delaney Honored for Heroic Efforts to Further HIV Treatment

Martin Delaney, a pioneering U.S. HIV activist and the cofounder of the HIV organization Project Inform, has been honored for his long years of tireless work fighting HIV. "It is without hyperbole that I call Marty Delaney a public health hero," said Anthony S. Fauci, M.D., the director of the U.S. National Institute of Allergy and Infectious Diseases (NIAID), who recently presented Delaney with the NIAID Director's Special Recognition Award. Since the mid-1980s, Delaney has been a leader in providing HIV treatment information to health care providers and HIV-infected people. During the nascent years of HIV treatment, he played a key role in ensuring a rapid acceleration of the approval process for vital antiretrovirals in the U.S. 

Sadly, Delaney passed away from liver cancer shortly after receiving the NIAID award. Daniel Berger, M.D., has written a moving eulogy to Delaney, and Project20Inform andNIAID have released statements on his passing. (If you knew Martin or were familiar with his work, please feel free to add your own comments to these articles.) 

Tribute: HIV Treatment Activist Martin Delaney

Bob Roehr

Medscape Medical News 2009

January 27, 2009 (Washington, DC) — The changes that the HIV epidemic has brought to medicine and research are staggering: the shape and conduct of clinical trials, the pace of regulatory approval, the availability of drugs both before and after approval, the very dynamics of the physician-patient relationship — all have been transformed during the past 25 years.

Martin Delaney was at the core of these changes. He had no academic credentials for the job — it didn't even exist when he started, but as with all transformational leaders, he made it up as he went along. He was the first HIV treatment activist.

And now he is gone, dead of liver cancer at the age of 63. He succumbed at his home in San Rafael, California, on January 23.

Since the advent of antiretroviral therapy, some may forget how horrible AIDS can be. The Castro district of San Francisco was the leading edge of the epidemic in the 1980s. Men in their twenties and thirties walked with halting steps, their skin turned gray, cadaverous sunken cheeks. And then they were gone.

Modern medicine offered little hope, so desperate souls turned to faith healing, herbal concoctions, drugs that were not approved for use in the United States but were smuggled from Tijuana. It was all word of mouth. Perhaps a placebo effect did some good, at least for a moment.

Martin Delaney began Project Inform in 1985 in an attempt to make some sense of it all. "Our question was, is this helping them or is it hurting them, or is it just a waste of money," he would later tell the filmmaker of a PBS documentary on AIDS.

He had no formal training in science or medicine but drew upon his own experience a few years earlier as a patient on an experimental regimen to treat hepatitis B. He learned as the field emerged and became the esteemed peer of many of the nation's leading researchers.

Changing the Medical Paradigm

Donald Abrams, MD, was among the first physicians to experience the challenge of AIDS. "I was a young, gay oncologist thrust in the midst of this new disease," he told Medscape HIV/AIDS. "I was credentialed and trained, had worked in Harold Varmus' retrovirology lab and was on the University of California institutional review board. So I figured, I knew not only science but clinical trials and how to do everything."

He continued, "Suddenly everything I knew was scrutinized and criticized by, who is this Martin Delaney? What does he know?" Dr. Abrams said it was a challenge to the prevailing medical ethos of the paternalistic physician and the nonquestioning patient. The pair initially clashed.

But at the time there was little that Western medicine could offer to patients infected with HIV. "So, we were all on equal footing," Dr. Abrams said. "It took a while for a young physician like me to appreciate the fact that I was really no better equipped to handle this than somebody who had hepatitis B and was treated with interferon at Stanford."

Traditional roles and dynamics "got broken down and reassembled" into a new partnership as physicians and patients together learned the medicine that would emerge. Dr. Abrams called Delaney "one of the master builders" of this new collaboration. "Marty taught us all."

Community advisory boards in clinical trials that evolved under Delaney's tutelage in San Francisco, and New York, soon became the model for all HIV trials funded by the National Institutes of Allergy and Infectious Diseases (NIAID).

Mr. Delaney served on NIAID advisory boards from 1991 to 1998, and he helped write the first treatment guidelines issued by the Department of Health and Human Services.

In 2008 he received the Special Recognition Award from NIAID Director Anthony S. Fauci, MD, for "extraordinary contributions to framing the HIV research agenda, particularly with regard to antiretroviral drugs and access to treatment; exceptional efforts on behalf of HIV-infected people; and wise counsel while serving on NIAID advisory committees."

In a recent statement Dr. Fauci said, "I worked closely with Marty for nearly a quarter century and will greatly miss his astute insights and advice. Many others at NIAID involved in the HIV/AIDS research effort also have benefited from his well-informed wisdom and counsel. The Institute and the AIDS community at large have lost an important colleague and good friend."

Mr. Delaney quickly saw that the cautious Food and Drug Administration (FDA) drug approval process poorly served people who were terminally ill. While ACT UP took to the streets in Washington and before the FDA, he worked intensely behind the scenes on the nuts and bolts of policy change.

"Marty was one of the key individuals who were responsible for helping to create accelerated approval and expanded access programs," Daniel S. Berger, MD, medical director of Northstar Healthcare in Chicago, Illinois, told Medscape Medical News.

Mr. Delaney worked with others within the community to put pressure on pharmaceutical companies to rein in drug pricing. He urged them to create patient assistance programs as a safety net program to fill gaps between coverage of private and government-run health insurance programs.

The Teacher

Martin Delaney was an elementary school teacher long before he became an activist. He embraced the role of teacher throughout his life. He was generous in mentoring young activists, patient in explaining the community to government and corporate officials, and he never forgot that the core mission of Project Inform was to educate and empower patients to make their own healthcare decisions.

Peter Staley was the advance man for Delaney's speaking engagements in the early 1990s, about 50 cities a year. "Marty was privy to the earliest exciting data on the protease inhibitors in development and saw it as his personal mission to keep people hopeful and healthy long enough for the drugs to become available.... When all we had to offer was hope, that's what he strived to give people," Mr. Staley said.

But his formal presentations were just the start. Mr. Delaney would stay after each session to speak with people about their individual issues and treatment needs. He readily shared his personal telephone number and was willing to assist with any snags that might develop.

"Marty would encourage patients to learn what was available and take the initiative to discuss it with their doctor," Dr. Berger recalled. "And if their physician was not amendable to being aggressive, then it was time to look for someone else for treatment."

The educated patient, though at times an exasperation to a harried AIDS physician, often is the most adherent to complex HIV regimens. The informed patient has been a spur to physicians to more quickly incorporate the latest research findings into routine clinical practice. The model of patient empowerment that Martin Delaney helped to create has long since spread beyond the confines of HIV.

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01.29.09	AIDS treatment activist Martin Delaney dies Bar Area Reporter	01.23.09	Human Rights Campaign Statement on Passing of Martin Delaney Human Rights Campaign
01.29.09	A Tribute to Martin Delaney, Project Inform Founder SF Bay Times	01.23.09	AIDS activist Martin Delaney dies at 63 The Miami Herald
01.27.09	In Memory of Martin Delaney: The Founder of Project Inform UNAIDS	01.23.09	AIDS activist Delaney dies Page One Q.com
01.27.09	Martin Delaney: An AIDS Warrior Passes the Torch Poz.com	01.23.09	Martin Delaney, HIV treatment activist, dies at 63 Examiner.com
01.27.09	Martin Delaney dies at 63; crusader for patients with AIDS Los Angeles Times	01.23.09	Martin Delaney, HIV treatment activist, dies at 63 KCWT 13 News
01.27.09	Tribute: HIV Treatment Activist Martin Delaney MedScape Medical News	01.23.09	HIV activist Martin Delaney dies at 63 Marin Independent Journal
01.27.09	HIV/AIDS Advocate Delaney Dies Kaiser Daily Report	01.23.09	HIV treatment activist dies at 63 San Diego 6 the CW
01.26.09	Martin Delaney: A lion is no more San Francisco Bay Guardian	01.23.09	Remembering AIDS Activist Martin Delaney NBC News
01.26.09	Martin Delaney Dies Windy City Times	01.23.09	Martin Delaney, HIV treatment activist, dies at 63 San Francisco Chronicle
01.26.09	Martin Delaney, 63, AIDS Activist, Dies New York TImes	01.22.09	Message from Dr. Robert Gallo
01.25.09	Martin Delaney, HIV treatment activist, dies San Francisco Chronicle
01.23.09	America's Most Influential AIDS Treatment Activist Dies Poz.com

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