Houston Buyers Club -- Desperate Days Beyond Dallas
The movie Dallas Buyers Club brings attention to a little-recognized part of the AIDS activist movement: the desperate struggle to provide anything that might treat the disease when no treatment was available.
AL-721, Compound Q, Peptide T -- buyers clubs formed around the country to bring in potential treatments, whether pharmaceutical or botanical, for both the virus and its effects. Many of these treatments, if not most, were not approved by the Food and Drug Administration (FDA) or not approved for the use for which they were taken.
Vitamins and other nutritional supplements were also sold, in many instances (if not most) at deeply discounted prices.
As shown by the smuggling in the movie, there were illegal risks taken, all in the name of saving lives. Also as shown in the movie, people with AIDS risked their lives on unproven therapies, all in the hope of surviving a disease at a time when it was killing people in large numbers.
"We wanted to live, but we were also desperate," said longtime AIDS activist and writer Matt Sharp.
While the movie focuses on Ron Woodroof and the Dallas Buyers Club, there were people all over the country taking risks: Martin Delaney, widely considered a hero, out of San Francisco; Fred Brigham, Sally Cooper, and James Learned in New York City; and Fred Walters Jr. and Nelson Vergel in Houston, among others.
There were also buyers clubs in Atlanta, Fort Lauderdale, and Sarasota.
"We used AL-721, egg lecithin, made from eggs," said Matt Sharp, who worked with the Healing Alternatives Foundation in San Francisco in the '90s. "It came in frozen packets," he laughed. "The things we did."
"There are so many rich stories. There was Jim Corti, who was HIV-negative, going out to Japan to buy stuff. He used to go with Marty [Delany], who didn't have HIV either, to Mexico to buy drugs. [Their story is told in the book Acceptable Risks by Jonathan Kwitny.]
"Healing Alternatives Foundation, one of the first [AIDS buyers clubs], went to extremes that others didn't. I remember selling him [Woodroof] Compound Q because we were one of the only sources then.
"Compound Q was used very widely in San Francisco. We had a contact in Japan or China or somewhere and they shipped it to us," said Sharp.
While the buyers clubs were aggressive about seeking out potential treatments, access was just one aspect of the problem.
"Nobody knew the appropriate dose," Sharp continued. "There were 10 vials in a cardboard box and people guessed as to how many vials or boxes they felt they could tolerate. We had an RN [registered nurse] in people's homes that we called our guerrilla clinics, to check blood pressure, administer the IV, and make sure people were okay."
Sharp told about making "bathtub drugs," whereby chemists take the chemical structure of a promising therapy and create it in their own laboratory without following FDA oversight.
"We did things that were very on edge. We found a chemist to make bathtub ddC [an anti-HIV drug that later came to market and has since been discontinued]. We were selling shitloads of that all over the country. I took it myself. I was on AZT and I knew AZT was being studied in combination with ddC.
"Then the feds got a sample and analyzed it and found varying levels of active drug in each pill. We probably set up a lot of [drug] resistance, even though it was a shitty drug anyway. I remember the day the FDA came in and gave us a cease-and-desist order, yet we opened back up in a few days."
Sharp said the clubs worked closely together and with chapters of ACT UP (AIDS Coalition to Unleash Power). They even ran their own small studies, gathering information to help force the federal government to pursue promising options.
"ACT UP/Golden Gate did viral load testing [measuring the amount of HIV in the blood] when it wasn't available," he said. "It was still in research. We ran a very small, non-randomized study. We did that kind of work. People in the community heard of viral load in research and we wanted access.
"There were pot buyers clubs all over the city and people with HIV would go to Dennis Peron's club on Market Street, but when the feds shut it down, the city stepped in and asked Healing Alternatives if we would sell medical marijuana, because they knew people were relying on it. I remember going with one of our board members and buying pot from dealers," said Sharp, with a laugh. "It was amazing the things we did."
Healing Alternatives, like many organizations around the country, also recycled drugs, taking left over medications and passing them on.
Then there was the time Healing Alternatives turned to the banned drug thalidomide, which caused horrific birth defects, as a treatment for HIV wasting, the tremendous loss of weight and muscle mass that was common, and fatal, in people with AIDS.
"The only place that had it was a clinic in Brazil," said Sharp, "and they were afraid of shipping it. So one of our board members who was on vacation there went to the clinic and brought back a suitcase full. The FDA found out and were freaked out, as they should have been. Marty and I flew out to Washington and demanded that we have a right to sell it, agreeing to strict controls on who we could sell it to, and they allowed us to, really because of Marty."
This article was provided by Positively Aware. It is a part of the publication Positively Aware. Visit Positively Aware's website to find out more about the publication.
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