Martin Delaney, the founder of Project Inform, died recently. He was 63 years old. He wasn’t HIV-positive, but he was one of the most influential HIV/AIDS treatment activists.
Rachel Maddow gave Delaney a great tribute on her TV show last week for his life’s work, especially praising Project Inform and HIV/AIDS activists everywhere.
Here’s what Rachel said:
Finally, this week in Northern California, a man named Martin Delaney died at age 63. Mart Delaney was not a household name. He was not known really at all outside his specific expertise. But knowing a little about what Mart Delaney accomplished in his life can tell you a lot about how un-famous people who aren‘t elected officials, who aren‘t celebrities can change the course of history.
In the ‘80s, about 150,000 Americans were becoming HIV positive every year. The mortality rate from AIDS was rising every single year. By the time it peaked in 1995, AIDS was the number one cause of death for people aged 25 to 44. After that peak, the mortality rate started dropping, quickly. The age adjusted death rate for people who are HIV positive has literally dropped 70 percent since then.
Now, the disease didn‘t change. The virus didn‘t change. So, why did HIV positive people start living longer? What caused this dramatic change of course in the epidemic? An improvement that translates to hundreds of thousands of people being alive who otherwise would not be?
That‘s why you need to know who Martin Delaney is. In 1985, Mr. Delaney founded an organization called Project Inform. Alarmed by how many of his friends were getting sick and dying with no hope of medical treatment, Project Inform took matters into their own hands.
They brought medications across the border from other countries illegally. They conducted their own guerilla clinical trials of compounds and medications that dying people were willing to try even when the authorities wouldn‘t test them.
When some HIV meds finally were in development, they insisted that HIV-positive people be involved in the decision-making and in on the assessment of the drugs‘ effectiveness.
They pushed for rigor in the trials, community access to the information produced by the trials and a faster, much faster pipeline for getting new drugs into very sick people.
The treatment activist movement that Project Inform helped launch set a new standard how medical research is done. It set a new standard for community activists being recognized as the experts in their own field regardless of whether they had the degrees and job titles that usually confer the honor of expertise.
And not incidentally, they saved the lives of hundreds of thousands, if not millions of people who would not have made it if we were still treating AIDS the way we treated it in the Reagan era when our president waited years until 20,000 Americans had been killed by this thing before he so much as uttered the word AIDS in public.
Project Inform still exists. The AIDS activist movement still exists. It is essentially a hidden, huge success story about people power changing the world. It is worth knowing about, maybe even worth joining up.
Click here to read a wonderful tribute to Delaney by AIDSmeds associate editor David Evans.