How they survived the plague: The battle for AIDS research

Since AIDS was first reported in the U.S. in June 1981, there have been 1.7 million Americans who are estimated to have been infected with HIV as of 2008, according to the U.S. Department of Health and Human Services. That amounts to one person being infected every 9.5 minutes. About one in five of them are unaware that they have HIV.

While HIV and AIDS still do not have cures today, the situation was far more dire in the 1980s. Getting a diagnosis was an immediate death sentence: Without any form of approved treatment in the early years, a person infected with HIV could expect to live 18 months.

There is no doubt "that there was no public health response in 1981 when the first reports of the disease came out," David France, director of AIDS documentary "How to Survive a Plague," told "The first report in the New York Times talked about 41 cases. It's really heartbreaking to look back and think if the federal government had really done anything to contain the epidemic that it might not have grown into this global pandemic that it is today."

The early days of AIDS

France's Oscar-nominated documentary, "How to Survive a Plague," is the story of how AIDS activists managed to convince scientists and researchers to join them in the fight to find new and effective treatments for the disease.

France, who was one of the first journalists to write about AIDS, said that in the very early days, researchers were not motivated to look for new drugs because they believed the potential market for them was rather small. It didn't help that the government was not interested in addressing the disease, especially because it mostly affected the gay male population and IV drug-using community.

"One of the things that's really hard to remember is that at the very beginning of AIDS, gay people had no role in civic life, that there were no known gay people in culture. There were no actors. There were no people in the news. We as a community, we were invisible," France said.

"The people in government, we see that in the film certainly, had no empathy for people who were stricken with the disease," he added. "As a result, they did very little."

France said for a while it seemed that the only people who cared about addressing the AIDS epidemic were the people afflicted with the disease and their advocates, especially the people of AIDS activist group ACT UP. For the most part, they staged protests and were very vocal about the need for attention towards the disease.

Iris Long brings science to the movement

It wasn't until Iris Long, a retired pharmaceutical chemist living with her husband in Queens, joined the movement that their intent took a different direction.

Long had taken interest in the AIDS epidemic because of her past research into drug compounds that she thought might be effective. After being ignored by New York officials and other non-profits, she found interested parties in ACT UP.

"She brought a message to them that she felt that what they were doing was misguided -- the idea that they were creating parallel pharmacies and parallel research enterprises," France said. "They were importing drugs that had not been studied effectively and just giving them to people. She felt their task was instead to go back to real system -- to the FDA to the NIH to the academic researcher facilities to big pharma(ceutical companies) -- and to force them to do the kind of work that they do best."

Instead of just protesting the Food and Drug Administration and the National Institutes of Health, which approved the medications and performed the research on diseases respectively, ACT UP sought to find a way to work with the agencies so they could provide the necessary drugs in an urgent matter.

They started the ACT UP Treatment and Data committee, whose job was to read through research papers, make them easier for the average person to understand and develop proposals for the people who could conduct AIDS research so they could have a direction to go in. Eventually, the Treatment and Data Committee became the Treatment Action Group (TAG), a think-tank organization that still works with scientists in the area of AIDS, HIV infection and tuberculosis research.

ACT UP also proposed the idea of Parallel Track research to the FDA. Because it took as long as 12 years for a drug in development to get approved by the FDA, the activists sought out a way to get the drugs out quicker to an otherwise terminal population.

"People with AIDS knew that once they were diagnosed they had about 18 months to live, and they felt they would have to wait 12 years for even the promise of a new medication, whether or not it was going to be fully effective, meant that they were destined to death," France pointed out. "They were doomed. They went to the FDA and said, 'Give us the drugs sooner than the 12 years. Let us try them on ourselves because even if they turn out to be fatal, well we're going to die anyway. At least we would have the hope that taking a pill would represent.'"

The FDA finally approved Parallel Track in April 1992 and allowed 12,000 AIDS patients to receive Stavudine (d4T) in October 1992 before it was available for market. The drug was eventually approved in Dec. 21, 1995.

"It was a major breakthrough in the way medicines were studied and released, and also the first display of compassion... on the part of the government toward people who were suffering from HIV and AIDS, acknowledging without access to this drug that they would die anyway," France said. "When they began to volunteer to be guinea pigs in this way, the government said we will allow you to do that, and we will be grateful for information your role as guinea pig might produce for other people. "

Though Parallel Track is still available, the majority of medications for serious and life-threatening diseases or conditions are now submitted in the FDA's Treatment INDs process. Similar to Parallel Track, it allows patients to use an investigational drug outside a clinical trial after the FDA has gathered enough data through clinical trials to ensure that the drugs are safe and may have some effectiveness.