Bay Area Reporter - January 29, 2009
Bob Roehr

Mr. Delaney didn't shout through a bullhorn or "die" in a street protest. He readily acknowledged the importance of those activities but he was more comfortable on the inside. He worked with scientists and policy makers, driven by an insatiable curiosity, a tenacious but good-humored persistence, a quest for fairness, and a belief in the essential humanity of every individual he met.

Colleagues mourned his passing.

"Marty never lost the visionary zeal that inspired and drove effective advocacy from the beginning of the epidemic," said Mark Cloutier, CEO of the San Francisco AIDS Foundation. "His legacy of effective and lasting policy victories will continue to drive all of us working to bring an end to HIV and AIDS. I personally will miss Marty's collegiality and leadership."

Current Project Inform Executive Director Dana Van Gorder said Mr. Delaney challenged scientists, drug companies, and others.

"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," Van Gorder said. "Those of us living with HIV feel deeply the loss of our chief guardian and friend."

Mr. Delaney, a Chicago native, tried the seminary but realized it didn't jibe with the growing sense of his sexual identity as a gay man. Instead, he taught elementary school.

A turning point came in 1978 when Mr. Delaney relocated to San Francisco to avoid the winter winds off of Lake Michigan and enroll in an early clinical trial to treat chronic hepatitis B. It cured him of the infection but left him with fairly severe neuropathy, a painful damage to muscle nerves, and cirrhosis, a scarring of the liver that put him at risk for developing the cancer that finally took his life. He bore these in silence; only a few people closest to him were aware of the extent of his afflictions.

HIV was soon to hit, and the epicenter was Mr. Delaney's new home, the Castro. People, he said, called it "'the look' û gray, loss of weight, and wasting syndrome. The fun that the Castro used to be was gone, and now it was like walking in the graveyard," he would later tell a PBS documentary on AIDS.

Mr. Delaney saw desperate friends trying anything û faith healing, herbal concoctions, drugs smuggled in from Mexico û in an attempt to stave off the cadaverous wasting of the plague. It was all word of mouth, someone saying that an elixir made them feel better.

Mr. Delaney, who was not HIV-positive, began Project Inform in 1985 in an attempt to make sense of it all. "Our question was, is this helping them, is it hurting them, or is it just a waste of money?" he had said.

Soon the phone was inundated with requests for information as word spread within the community in San Francisco, then around the country. Project Inform became one of the first and best organizations to educate and empower patients in making health care decisions. It served as a model for other diseases.

Changing medical establishment

Donald Abrams was a gay physician just establishing his practice in San Francisco in the early 1980s. Kaposi's sarcoma was a primary AIDS-defining condition at the time and as an oncologist he saw many of those patients. He also was steeped in the then-ruling paradigm of an all-knowing paternalistic physician; the patient was supplicant.

"Suddenly everything I knew was scrutinized and criticized by, who is this Martin Delaney?" Abrams recalled in a recent phone conversation. The two began as antagonists but within a few years were working together in partnership and eventually as friends.

The system of community advisory boards in clinical trials that evolved in San Francisco and New York soon became the model for all HIV trials funded by the National Institute of Allergy and Infectious Diseases. It would later spread to cancer research and become standard practice in international clinical trials.

"Marty taught us all," said Abrams.

"Most of the scientists did not want us involved," Mr. Delaney told the Bay Area Reporter in an interview last June, when he was honored by Project Inform. "We were not welcomed."

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

Last week, just four days before his death, Mr. Delaney was recognized by NIAID director Dr. Anthony Fauci, who awarded him the agency's highest honor, the NIAID Director's Special Recognition Award 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."

Mr. Delaney worked on the inside to get the Food and Drug Administration to speed up its drug approval process for life threatening conditions. He pressed both the FDA and industry to offer dying patients expanded access to drugs that had demonstrated some efficacy but were not yet approved. And he worked with pharmaceutical companies to rein in the price of new drugs and offer assistance programs to those who could not afford them.

Grassroots activism

Mr. Delaney was a peer to the leading researchers and policy makers in the nation, yet he never lost touch with the grassroots. Community forums were a cornerstone of patient education and empowerment in the pre-Internet days, and they remain an important part of the mix today.

He would often spend countless days on the road speaking before groups on the latest developments in HIV treatment. Mr. Delaney always had time at the end to sit down with patients to talk about their individual problems. He never hesitated in urging patients to demand the best care from their physicians, and to look elsewhere if they were not getting it.

"There will never be another Martin Delaney. He was the first AIDS activist, the trailblazer," said Baltimore activist Lynda Dee. "Marty taught so many of us in the community how to be treatment activists. AIDS research would not be at this successful juncture without his vision and perseverance. He is one of the true heroes of our movement."

"He knew all the data, but could break it down into common language that schooled me as a young activist in Philly," said Community HIV/AIDS Mobilization Project founder Julie Davids. "He was unrelenting on what he thought was right." And he was inclusive. "He would push through the doors of the corridors of power [and] brought others along with him, even if they had disagreements," she added.

"It's hard to imagine what it would have been like without Marty's guiding hand," said Peter Staley, an early member of ACT UP/New York and founder of http://www.AIDSmeds.com. "He's indirectly helped tens of thousands of people by shaping clinical trials, the development of HIV drugs, and policies affecting treatment access and the price of drugs. And much more personally, he's helped thousands of people one-on-one. He prophesized hope when there seemed to be none."

"It's important to honor his achievements, but it's also important to honor his humanity," Staley added.

Van Gorder said Project Inform's work would continue.

"I am acutely aware that there are many HIV-positive people nationally who considered Marty to be their chief protector and who counted on him to assure the future success of their HIV treatment," Van Gorder wrote in an e-mail. "I want to assure the community that Project Inform, along with its treatment advocacy partners, is filling and will continue to fill the huge gap left by Marty's death by working with researchers and pharmaceutical companies to continually strengthen HIV treatment and identify a cure."

Treatment advocates are pressing for creation of a lecture in Mr. Delaney's honor at the annual retroviral conference meeting in February.

Mr. 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 Mr. Delaney are pending. Mr. Delaney asked that gifts be made in his memory to Project Inform. For more information or to donate, visit http://www.projectinform.org.

090129
BR090110

Always watch for outdated information. This article first appeared in 2009. This material is designed to support, not replace, the relationship that exists between you and your doctor.

AEGiS presents published material, reprinted with permission and neither endorses nor opposes any material. All information contained on this website, including information relating to health conditions, products, and treatments, is for informational purposes only. It is often presented in summary or aggregate form. It is not meant to be a substitute for the advice provided by your own physician or other medical professionals. Always discuss treatment options with a doctor who specializes in treating HIV.

Copyright ©1980, 2009. AEGiS. All materials appearing on AEGiS are protected by copyright as a collective work or compilation under U.S. copyright and other laws and are the property of AEGiS, or the party credited as the provider of the content. .