POSITIVELY AWARE January+February 2014
Houston Buyers Club
—Desperate days beyond Dallas
—BY Enid Vázquez
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 thought 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.”
A tale of two Texas cities
Ironically, the Houston Buyers Club opened as the Dallas organization closed, but the movie premiere in November was too late to help save the Houston group. The Houston Buyers Club had closed just six months earlier. Now, only the New York Buyers Club remains.
“I wish this movie had come out two years ago,” said Fred Walters, Jr., one of the founders of the Houston Buyers and director for its 18-year history until its closing last year. “It would have helped our cause greatly. When you have Matthew McConaughey [star of the movie] telling your story, you have someone helping you spread the message about your mission, and that helps the programs stay funded.”
Walters spearheaded the formation of the club after attending a workshop on nutrition for people with AIDS run by activist Nelson Vergel, who’s also from Houston. Walters went to Whole Foods and picked up all the items Vergel recommended and took them to the cash register, where he was shocked at the price tag: $250.
“I called Nelson up and said, ‘What the fuck?! Two-hundred and fifty for one month? Didn’t you say something about a buyers club?’
“We met up with a couple of other people and Nelson said, ‘There's a buyers club in Dallas...let's work with them.’ I remember talking with Ron. He mentioned vitamins with scientific names I never heard of, medications I never heard of, et cetera, et cetera. I talked with Rayon [also a central character in the movie]. When I called back, the line was disconnected. Later, I learned that they kept moving locations to avoid the ATF [Bureau of Alcohol, Tobacco and Firearms) and the FBI.”
Houston Buyers Club survived as long as it did in part due to the Ryan White funding activists successfully screamed for and in part because it moved from the third floor of a skyscraper with a scary garage (“It was called the Haunted Mansion,” said Walters, “and everyone hated it.”) to a street-level storefront for its last seven years.
There it succeeded on two important fronts: it brought in people who did not have HIV and the fact that anybody could—and did—enter the store helped eliminate the stigma of being perceived or outted as a person living with the virus. The store also helped people with cancer, diabetes, and other conditions.
From there, word of mouth helped with sales. “We were honest. If people came to the counter with 10 items, we would ask what they were for and tell them they didn’t need all that. We didn’t have to please investors and gouge people,” said Walters.
Even doctors called the club for advice and information, he said. Dietician students from a nearby school did a month’s rotation (on-site work and study) at the club, but needed a lot of training to overcome their aversion to nutritional supplements.
Still, he said the organization was also hurt by many people’s doubts over nutritional supplements and their desire for instant results available by injection or a medication, instead of waiting three months on a supplement for their T-cells to go up or their diarrhea to stop.
“I think what we did in conservative Texas is we carved out a bigoted reaction and introduced a new treatment concept in healing and in medicine,” said Walters.
As for the movie, it will have to wait.
“I haven't seen the movie yet,” said Walters. “I've been avoiding it mainly because the loss of Houston Buyers Club is still very tender to me. And, reliving all of that passion all over again is still more than I can handle at this point.”
His aversion was so great, he said he had hoped to be out of the country when the movie’s press hit.
Nelson Vergel has no plans to see the movie at all, saying it would trigger feelings akin to post traumatic stress disorder. Still, Vergel said the greater story of all of the buyers clubs needs to be told.
“We were burning our skin with a photographic chemical because it was supposed to help our immune system,” said Vergel. “AL-721, Chinese cucumber (Compound Q)—we were trying everything we could. The history of experimentation needs to be told.”
Sharing information across the country and comparing notes in those days was much more difficult, when news was spread by newsletters that were copied then mailed and phone calls were prohibitively expensive. Vergel praised John James for promoting the buyers clubs and clinical studies in his outstanding newsletter, AIDS Treatment News, mailed out every two weeks without fail (Volumes 1 – 75 are available in a book from Amazon.) “Remember, this was before the Internet. He deserves an award.”
There was also Sister Mary Elizabeth Clark, a transgender military officer who became a nun and operated the AIDS Education Global Information System (AEGiS), a bulletin board system before the World Wide Web was created, spreading the word about all treatment and prevention news.
One city, three clubs
As shown in the movie, unknown drugs may have unintended consequences.
“We didn’t know if something would work. We had to fly by the seat of our pants,” said George Carter, formerly of the New York City buyers club DAAIR, Direct AIDS Alternative Information Resources.
An extract of the herb St. John’s wort, for example, worked in the test tube against HIV, but not very well in people, said Carter. “It caused sun sensitivity and people fried in the sun. It was just terrible.”
When DAAIR founder Fred Bingham retired and closed the organization 10 years ago, the staff and volunteers started the New York Buyers Club, still in existence today. Carter said Bingham, a guy with a “colorful” past who turned his skills to use in DAAIR, was every bit as remarkable a character as Ron Woodroof.
PWA Health Group was the first buyers club in New York, and one of the first in the country. It distributed a newsletter, Notes from the Underground (available along with the organization’s other records in an archive at the Cornell University Library). Former executive director Derek Hodel created an outstanding slideshow of the buyers clubs’ history for the Dallas Buyers Club distributor; visit focusfeatures.com.
Because AIDS is a condition that if left untreated breaks down the immune system and leads to complications and—in those days— often death from even common infections, treating those infections and conditions in a time when there was no HIV treatment was just as critical as finding antivirals. Today, most opportunistic infections—those that attack when the immune system is weakened—are relatively rare in the U.S.
Many treatments used successfully in other countries at that time, however, were not available here. Buyers clubs distributed many therapies that were later approved by the FDA, stepping in to save lives when the FDA moved slower than activists thought reasonable (something they successfully worked with the agency to change).
“Bactrim [tablets] worked for PCP (pneumonia)—this was known in the ‘70s,” said Carter. Yet Bactrim had not been approved for the treatment of PCP when people with AIDS began dying from the rare condition in droves, and were using the more difficult aerosolized pentamidine treatment instead. Buyers clubs sold Bactrim instead. The antifungal fluconazole (Diflucan) was brought in before FDA approval, successfully replacing the horrific amphotericin treatment given back then for cryptococcal meningitis, usually intravenously. The antibiotic clarithromycin (Biaxin), common today, was brought in to stop the deadly mycobacterial infections which had no treatment. Itraconazole (Sporanox) and azithromyocin were other medications available elsewhere but not in the U.S.—except through an AIDS buyers club. Tinidazole, which works better with fewer side effects for the treatment of parasitic infections than its cousin, Flagyl, was another. Polylactic acid (formerly New Fill) was used to help treat the wasting damage to people’s faces.
Nearly all of those drugs have since been approved by the FDA. Many were brought in with Personal Use Importation forms and prescriptions in some cases as the process was more formalized, though this remained only quasi-legal at the time.
Just as important, said Carter, was information about nutrition and nutritional supplements. “HIV affects your gut, and your inability to absorb nutrients. You have to help the body function properly,, to live longer and maybe get a better bang for the buck from antivirals or help reduce side effects.”
At the same time, he noted, “You don’t want to replace antivirals with multivitamins. HIV denialism took lives but also sometimes caused people to throw out the baby with the bathwater—we need both approaches.”
He said there was, however, a lot of resistance to anything not pharmaceutical, something he’s seen change greatly over the last 25 years. He noted research such as the two studies showing that multivitamins for people not on antivirals can slow progression to death. When the first AIDS medications finally came, however, “They were shitty drugs that were keeping people from dying. It was only when they were combined—sometimes people did that before trials—that we began to see some real effects.”
“God knows there were limitations to what the buyers clubs did,” said Carter. “I think the best thing about what the buyers clubs did was trying to help people to understand what something could do and how to assess it, how best to help people make good treatment decisions. Little by little, we get more data, but there’s this artificial and stupid divide between pharmaceuticals and everything else. I don’t care what you call it. I just want to know if it works.
“But it is vital to remember the history of buyers clubs and their key importance in both uncovering novel approaches to managing disease and the value of micronutrients and botanicals in at least improving quality of life, health and yes, longevity. I know some friends who are here because of those interventions too.”
It’s not over
Carter notes that new hepatitis C drugs that could cure his and millions of others’ infections are costing $1,000 a pill and says that the greed of the industry remains a threat to lives all over the planet.
As Dallas Buyers Club gained more and more publicity, an HIV specialist approached Nelson Vergel to help force the FDA to reverse its decision to refuse orphan drug status to an anti-HIV medication which had been stopped during research. Such a designation would help make the drug available to people who badly need it. The doctor was desperate to save one such patient, for whom nothing else was working.
“By the way,” Vergel wrote in his e-mail message to the AIDS Treatment Activists Coalition, “this drug also saved my life.”
Vergel, who overcame cancer last year, said, “I always appreciate life, more so now after the cancer. Life deals you a set of cards and you play them the best you can.”