In the news ... 2009

Martin Delaney, key figure in the fight
against HIV/AIDS, dies at age 63

January 23, 2009

Martin Delaney, Founder, Project Inform

Martin Delaney, who in 1985 founded Project Inform, a leading national HIV patient advocacy organization, died today in San Rafael, California. Delaney, who served as the agency’s Director until January 1, 2008, was 63 years old at the time of his death from liver cancer.

“When the final history of AIDS is written, there is no question that Martin Delaney will be one of the key figures who brought this great human tragedy to an end,” said Dana Van Gorder, Project Inform’s Executive Director. “Marty rose brilliantly to the challenge of persuading sometimes reluctant government agencies, researchers, and pharmaceutical companies to respond in a compassionate and urgent way to the needs of thousands of people dying of AIDS. The fact that we now benefit from a very strong arsenal of medications to treat HIV infection, and from information about how to use them effectively, is largely attributable to this great man. Those of us living with HIV feel deeply the loss of our chief guardian and friend.”

Delaney is an internationally recognized leader of the movement to represent the needs of HIV patients in the process of drug discovery and to accelerate FDA approval of promising drugs. He was a key player in the development of today’s widely used Accelerated Approval regulations and the Parallel Track system for providing experimental drugs to seriously ill people prior to formal approval by the FDA. He was one of the founders of the community-based HIV research movement and, through Project Inform, led the way to an unprecedented level of HIV treatment education available to both patients and caregivers. Delaney also led the Fair Pricing Coalition, which negotiates with industry to assure that HIV medications are affordable and accessible, and he was Chair of the Board of the Foundation for AIDS Research.

Delaney has been a constructive critic of federal, academic, and industry AIDS research efforts and a featured voice in the media and at scientific conferences on AIDS-related topics. His writings have appeared in prestigious medical publications including The Journal of Infectious Diseases and the Journal of AIDS, and in a number of popular magazines. Delaney is also the co-author of Strategies for Survival, The Gay Men’s Health Manual for the Age of AIDS and editor of the Project Inform HIV Drug Book. His work and the history of Project Inform have been described in several books, including Acceptable Risks, by Jonathan Kwitney; Against the Odds by Peter Arno and Good Intentions by Bruce Nussbaum.

Delaney is survived by a sister, Lois Delaney-Ogorek, brothers Bill, Don and Michael Delaney and many nieces and nephews.

Details regarding a memorial service to honor Delaney are pending. Delaney asked that gifts be made in his memory to Project Inform.

Speaker Nancy Pelosi responds:
“Through his work at Project Inform to increase awareness about HIV/AIDS treatment opportunities and challenges, Martin Delaney leaves an extraordinary legacy,” said Speaker Nancy Pelosi. “Access to the information Martin committed his life to sharing has literally been the difference between life and death for millions. Dr. Anthony S. Fauci, Director of the National Institute of Allergy and Infectious Diseases, said it best when he called Martin a public health hero. San Francisco mourns his loss.”

Dr. Anthony Fauci responds:
Dr. Fauci, who leads the federal agency responsible for research and drug development for HIV, on January 11 issued a Special Recognition Award to Delaney. “Millions of people are now receiving life-saving antiretroviral medications from a treatment pipeline that Marty Delaney played a key role in opening and expanding,” said Fauci. “Without his tireless work and vision, many more people would have perished from HIV/AIDS. As a treatment advocate and activist, Marty always was keenly analytical, well-informed, articulate, persistent, tough-minded, gracious and fair. NIAID thanks him for his advice, his boldness in asking hard questions, and for the countless hours he devoted to helping NIAID in the fight against HIV/AIDS. He was a formidable activist and a dear friend.”

Lynda Dee responds:
“There will never be another Martin Delaney,” said Lynda Dee, founder of the AIDS Treatment Activist Coalition, “He was the first AIDS activist, the trailblazer. Marty taught so many of us in the community how to be treatment activists. He will be sorely missed by community and by so many researchers. AIDS research would not be at this successful juncture without his vision and perseverance. Marty is one of the true heroes of our movement. His example will always be with us.”

Lew Sibert responds:
“I knew Marty for over 20 years,” said Lew Sibert, Vice President for Global Affairs with Tibotec Therapeutics, with whom Delaney worked to develop that company’s successful HIV medications. “He taught me a great deal of what I have come to personally know and understand, not only about HIV, but about how to treat people. He constantly demanded that I think of patients first and that I always test myself against the qualities of fairness, transparency, integrity and commitment. He will always be with me in spirit and in my daily living.”

Kathy Ireland responds:
“Martin Delaney was a beacon of light and hope in a dark time in our world with people battling HIV/AIDS had none,” said Kathy Ireland, of Kathy Ireland Worldwide, one of Project Inform's first donors. “His genius was battling bureaucracy and the status quo for innovation and compassion against the enemy of HIV. Project Inform's mission was founded in a simple truth that knowledge is power. Whether lobbying the White House, negotiating with drug companies for greater access and affordability, or teaching people with HIV how to make their disease a manageable chronic condition, Marty was on the front line. We thank him and we love him.”

Martin Delaney and Project Inform’s History
Project Inform was founded in 1985 by Martin Delaney and Joe Brewer, who saw the need to provide information to a terrified community about the growing epidemic and any possible ways of treating AIDS.

Representing the needs and interests of people with HIV/AIDS in the development of treatments for HIV
Project Inform acted to encourage a reluctant pharmaceutical industry to consider the development of medications to address HIV. The agency’s volunteers brought potentially valuable compounds into the country to get them into the hands of dying people because government was acting too slowly, and we conducted our own clinical trials on possible treatments when other entities would not. As government researchers and drug companies began to develop pharmaceuticals for HIV, Project Inform insisted that they include HIV/AIDS patients in their decision making. We advised researchers on how to design clinical trials that were humane to patients, helped to guide decisions about which compounds would be safe and tolerable for patients, and insisted upon research to assess medications after they had been brought to market. Project Inform also successfully pressed the FDA to approve safe and effective drugs in a more timely way.

Providing HIV treatment information to patients and their caregivers
Project Inform staff members travelled the country holding Town Hall-style meetings attended by tens of thousands of individuals eager for information about HIV disease and its treatment. As new HIV medications became available, these events provided patients and their caregivers with everything they needed to know about when and how to use them, how to address their side effects and how generally to manage HIV care. Project Inform also established the only National HIV Treatment Hotline in the country, receiving tens of thousands of telephone calls a year from people desperate to obtain the most current information about HIV treatment.

Assuring an enlightened response on the part of government to the epidemic, and a safety net of publicly funded health care programs for low-income people with HIV
Project Inform also lead efforts in Washington, D.C. and Sacramento to assure that the body of law and policy needed to respond appropriately to HIV is strong. We became particularly known for expert advocacy to assure that public programs offering primary medical care and pharmaceuticals to low-income people with HIV/AIDS are funded at their highest possible levels and managed to provide the highest quality care possible. These programs include Medicare, Medicaid and the Ryan White Program. Additionally, we have been responsible for significantly increasing federal funding of research to support the development of pharmaceuticals for HIV.