AIDS Activist Martin Delaney Honoured By NIAID
24 Jan 2009
Martin Delaney, the founder and longtime director of the HIV advocacy/education organization Project Inform, has been presented with the National Institute of Allergy and Infectious Diseases (NIAID) Director's Special Recognition Award for his many contributions to the fight against HIV/AIDS.
Mr. Delaney in 1985 founded Project Inform, a leading national HIV treatment and public policy information and advocacy organization based in San Francisco, and served as its Director until 2008.
He was a member of the NIAID AIDS Research Advisory Committee from 1991 to 1995, served on NIAID's National Advisory Allergy and Infectious Disease Council from 1995 to 1998, and also has served in other advisory roles for the Institute.
The NIAID Director's Special Recognition Award cites Mr. Delaney's "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."
"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," says NIAID Director Anthony S. Fauci, M.D. "Without his tireless work and vision, many more people would have perished from HIV/AIDS. He is a formidable activist and a dear friend. It is without hyperbole that I call Marty Delaney a public health hero."
"As a treatment advocate and activist, Marty always has been keenly analytical, well-informed, articulate, persistent, tough-minded, gracious and fair," Dr. Fauci adds. "With this award, NIAID thanks Marty for his advice, his boldness in asking hard questions (and demanding cogent answers), and for the countless hours he has devoted to helping NIAID, formally and informally, in our work in the fight against HIV/AIDS."
Mr. Delaney was one of the founders of the community-based HIV research movement and, through his work at Project Inform, led the way to HIV treatment education becoming widely available to patients and medical providers. He was a leader of the movement to accelerate Food and Drug Administration approval of promising drugs and a key player in the development of today's widely used Accelerated Approval regulations and Parallel Track system for providing experimental drugs to seriously ill people preceding formal FDA approval.
In recent years, among many other activities, Mr. Delaney has led the Fair Pricing Coalition to improve the accessibility of HIV medications, and has advocated for an aggressive research agenda to find a cure for AIDS.
Marin Independent Journal
Anne Donnelly of San Anselmo, who worked with Mr. Delaney at Project Inform for 20 years, said, "Martin was probably one of the most amazing activists I've met. He had an ability to work with anybody, from Anthony Fauci at the National Institutes of Health to research scientists to the pharmaceutical industry and at the same time with people living with HIV with the activists.
He was able to walk in all worlds with grace, intelligence and wit."
Mr. Delaney's passion for cutting through the red tape associated with getting new drugs approved grew out of his personal experience, although he was not HIV positive, Donnelly said. Years ago, she said, Mr. Delaney was admitted to a clinical trial at Stanford University for a drug to treat hepatitis B.
"He had access to a drug that saved his life but left him with permanent peripheral neuropathy," Donnelly said. "So when HIV struck and started decimating his community and people he loved, he felt really strongly that people with a life-threatening condition should have access to an experimental treatment as long as they had full information about what that treatment could do."
Andy Fyne, community relations manager for the Marin AIDS Project, said, "He became motivated to work in the AIDS field because he had a partner who died of HIV disease."
Mr. Delaney would occasionally speak to the Marin AIDS Project's clients, Fyne said.
"His message was one of great hope," Fyne said. "So many people want to speak to us about drug treatments and treatment strategies. He would speak about the cure and tell us what avenues were most promising. I remember being really motivated by hearing him talk about how the cure was possible."
Mr. Delaney was born Dec. 9, 1945 and spent much of his life in Chicago. He is survived by a sister, Lois Delaney-Ogorek, and brothers Bill, Don and Michael Delaney.
Plans for a memorial service are pending. Mr. Delaney asked that gifts be made in his memory to Project Inform.
AIDS activist Delaney dies
by Nick Cargo _http://pageoneq.com/news
AIDS treatment activist Martin Delaney, revered in HIV research and advocacy circles, succumbed to liver cancer on Friday, Project Inform announced.
Delaney, a Project Inform co-founder and board member of the Institute of Human Virology, was 63 years old. He advocated for decades, largely behind the scenes, to ensure access to medicines and treatments for people living with HIV. This past week, he was awarded the NIAID Director's Special Recognition Award for his work. Delaney served on the NIAID's AIDS Research Advisory Committee from 1991 to 1995, as well as its National Advisory Allergy and Infectious Disease Council from 1995 to 1998.
Delaney's methods were unconventional but well-meaning and effective, longtime friend David Evans recalled in June:
"Marty is not a typical activist. He's unlikely to get arrested in front of the New York stock exchange or the Capitol building. Yet he repeatedly risked arrest and prison in the late 1980s, smuggling in drugs from Mexico that we once hoped would effectively treat HIV. He helped with the founding of the first buyers clubs that worked on quasi-illegal generic formulations of AIDS drugs in development. Marty will Gay and Lesbian Advocates and Defender say buck authority and break the rules when he believes that there's no other rational way to accomplish his goals. "Marty isn't much of a yeller and screamer. When he sees a problem his first instinct is usually to figure out who is the person with the most power to effect the change he wants and then to pick up the phone and call that person, and to keep calling until he gets what he wants. This means that his advocacy work is often private, rather than public, and that much of his work has gone unnoticed and unacknowledged."
"They created AIDS treatment activism," AIDSmeds.com founder Peter Staley said of Delaney and his counterparts. "I'm alive today because of gay men like Marty."
In December 2004, Delaney spoke with PBS' Frontline about what drove his efforts and inspired him to found Project Inform in 1985 as the AIDS epidemic grew.
"I think AIDS was a political issue from the very start simply because of the lack of response to it," he explained. "There was no research money for AIDS in the early years. There was no real response. The only place where we saw scientists work on it was because of personal interest, where they'd move grant money from one thing over to this. We're lucky that some of them did that. But there just wasn't any willingness on the part of the government to deal with it until almost the late '80s, middle to late 1980s."
"What we originally set out to do," he added, "myself and my partner, Joe Brewer, [my] partner in the project, was to study the phenomenon of people who were self-medicating with some of the drugs they could bring in from Mexico. By the 1985-'86 era, some drugs were starting to be put into clinical trials at the National Institutes of Health, and some of those drugs you could buy over the counter in Tijuana or any other Mexican city. It simply made sense to an awful lot of men affected by the disease to get down to Mexico on the weekend and buy those drugs.
"Now, our question was, is this helping them, is it hurting them, or is it just a waste of money? That's what the original project of Project Inform was about, was to try to collect data on that question."
The following is a video tribute to Delaney from NIAID's Dr. Anthony Fauci on his retirement last summer:
YouTube - Anthony Fauci Tribute to Martin Delaney - (01/20/09)
NIAID Honors AIDS Activist Martin Delaney - (01/20/09)
Project Inform's full statement appears below.
Dear Friends -
It is with profound sadness that Project Inform announces the passing this morning of our Founder, Martin Delaney. He was 63 years old.
When the full history of the HIV/AIDS epidemic is written, there can be no doubt that Marty will rank as one of the greatest contributors to ending this great human tragedy. Those of us living with HIV, and all of us who care about people living with HIV, mourn the loss of this great leader, lifesaver and wonderful human being.
Marty's activism is legendary. He was a true David among many Goliaths. He has assured that government, researchers and pharmaceutical companies understand and respond to the needs of HIV-positive people. He heavily influenced the development of the strong arsenal of medications we now have to prolong life for millions of people worldwide.
Personally and through Project Inform, Marty has educated or counseled tens of thousands of HIV-positive individuals and their caregivers about how to treat HIV. A day does not pass in the life of this agency that we do not hear from a person living with HIV or a supporter about a life lengthened or saved as a result of Marty's efforts.
Intellect, activist, diplomat, mentor, friend - each of us will remember Marty for the great attributes he brought to his lifesaving work. We will miss him terribly.
Project Inform's offices will be open today, Friday, January 23 until 7pm and on Saturday, January 24 from 10am to 4pm so that friends can drop by to be in community with one another in response to this great loss. We are located at 1375 Mission Street at 10th Street in San Francisco.
We will provide information as quickly as we are able about the date of a public event to memorialize Marty. Emails can be sent to Project Inform, and cards can be mailed to Project Inform, 1375 Mission Street, San Francisco, CA 94103.
The Staff and Volunteers of Project Inform