Prominent AIDS Activist Succumbs to Liver Cancer

Over the past few months, my husband has developed a huge crush on the sassy political commentator Rachel Maddow; he is a frequent watcher of The Rachel Maddow Show on MSNBC so the other night while he was putting our son to bed, I decided to catch her show to see just how witty my competition was. By the end of her program, even I had developed a mini girl-crush on her. Crushes aside, during her program, she mentioned the death of the AIDS advocate, Martin Delaney. Now, I am constantly scouring the news looking for new AIDS/HIV topics to write about and I could not believe I had never heard of Delaney before. A guerilla AIDS activist determined to allow dying patients one last chance at survival, Delaney single-handedly pushed for the distribution of experimental AIDS treatments.

Although he died of liver cancer at the young age of 63, Delaney was able to impact the entire nation and its view of AIDS. Despite the fact that Delaney was HIV negative his entire life, he felt compelled to become a strong advocate for the rights of AIDS patients after witnessing several of his friends succumbing to the virus in the 1980s. In one of his earliest attempts to help the cause, Delaney would find himself smuggling drugs across the Mexican border. After hearing that ribavirin, a drug used to treat colds, was also known to give the immune system a boost, Delaney decided to stock up on the drug to help out those AIDS patients whose immune systems had deteriorated. He soon realized that while he was making a small difference by doing this, he could make an even larger impact by getting involved in the political fight.

In 1985, Delaney helped build the AIDS advocacy group, Project Inform. This organization began by offering what Delaney described as “medically supervised guerrilla trials” to study the effects and safety of those drugs that had not been federally approved, like the ribavirin he once helped smuggle. The organization was responsible for establishing a nationwide hotline to help answer questions and address concerns on AIDS treatment, as well as sponsoring informational HIV/AIDS summits across the United States.

According to Dana Van Gorder, the executive director of Project Inform, “Marty and Project Inform challenged the research and pharmaceutical community in the earliest years of the epidemic to consult with HIV-positive patients and their advocates” about their various options for treatment. In the book, “Acceptable Risks” by Jonathan Kwitny, Delaney plays a large part in the debate over whether those patients who are terminal can request those drugs which have had promising lab results but that have not been distributed to the public or approved by the government. Delaney questions, “Who should decide which risks are acceptable, the bureaucracy in Washington or the patient whose life is on the line?”

Delaney and his colleagues were forefront in the efforts to push the FDA (Food and Drug Administration) to quickly approve those drugs which had proved promising in lab trials. Days before his death, the National Institute of Allergy and Infectious Diseases recognized Delaney with the Director’s Special Recognition Award for his “extraordinary contributions to framing the HIV research agenda.” Dr. Anthony Fauci, the director of the institute, stated, “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.”