“Managing Your Own Survival”: Buyers Clubs in the AIDS Epidemic

Hannah Dorf is a [2020] Gender, Women’s, and Sexuality Studies major. She once thought she would be a Biology major and dreamt of studying the HIV virus in labs; now she has turned to the social sciences and humanities, but her passion to study the illness remains.

The AIDS epidemic of the 1980s and the 1990s sparked many forms of protest in the United States. People were dying quickly after diagnoses, and the government took a long time to respond. It took a year for the CDC to connect related deaths and finally announce AIDS, another year for all the forms of transmission to be established, and yet another year for the cause of AIDS to be found: the HIV virus. This was a deadly epidemic that the government was slow to respond to, so people protested. Among the more highly controversial forms of protests were buyers clubs. Buyers clubs in the AIDS epidemic were used to smuggle large quantities of non-FDA approved foreign drugs into the United States to be redistributed to the membership of the club [1]. Members paid a membership fee, usually a monthly cost, to have access to the drugs from the club. The film “Dallas Buyers Club” tells the story of Ron Woodroof, the man in charge of one of the many buyers clubs across the United States. While this film has some fictitious elements, it still tells an accurate story of how the clubs operated with their smuggling, distribution, and legal battles. This film allowed for a wide audience to understand the importance of buyers clubs to people with HIV and AIDS. The buyers clubs provided medical care seen to many as necessary for survival. All across the US, normal citizens were taking their medical care into their own hands when the government failed to appropriately act on the AIDS epidemic.

There were buyers clubs in Dallas, Ft. Lauderdale, New York City, San Francisco, and many more cities. Each had thousands of members [2]. The clubs were technically independent from one another but would aid each other in circulation of product or inform each other on sources to obtain products. The Ft. Lauderdale Principles was an ethical code established by the Ft. Lauderdale buyers club, including a requirement to provide products at the “lowest possible cost” [3]. Most clubs subscribed to this ethical code, making the primary goal of these buyers clubs not to be profit, but rather providing potentially life-saving services to their members. These buyers clubs began in the mid-1980s, before the FDA approved the first drug to treat HIV/AIDS. The clubs began as a way to provide drugs to medicate those infected with HIV/AIDS.

The FDA has an extensive drug approval process, usually taking 10 years for a drug to be approved for prescription. AZT, the first FDA approved drug for AIDS, was approved on March 20, 1987 after just 20 months of study [4]. AZT was not a cure by any means; the drug inhibited the ability of HIV-infected cells from producing more of the virus, to slow the rate of infection within the body of an HIV positive person. The FDA and CDC provided little information about HIV/AIDS, how it spread, how to protect oneself, how the disease progressed in those infected, and other vital information about the disease. HIV/AIDS had been a deadly reality in the United States since 1981, years before AZT was approved as a prescription. The United States government failed to appropriately act in this time of epidemic. They failed all over the board, in things as simple as providing easily accessible information about the disease to slow action on the development of FDA approved medicine. It took the then-current President Ronald Reagan until 1985 to even publicly acknowledged the disease [5]. The United States government and the American medical system were failing their citizens. During the 1970s, there was already widespread “popular distrust of government and other authorities, coupled with a growing climate of self-determination” [6]. Thus, the epidemic began with American citizens being predisposed to be skeptical of the government and other forms of authority like the pharmaceutical companies. The rising ideal of “self-determination” allowed citizens to be more willing to take their medical care and health into their own hands. The buyers clubs developed as a way to fill this huge gap in American medicine.

Before AZT’s approval in 1987, there was nothing Americans infected with HIV/AIDS could legally do for their health. The approval of AZT was the first action by the government to help those with the disease. There was outrage by both infected and non-infected Americans for the inaction of the government and medical professionals. The introduction of AZT into the legal medical market did not necessarily weaken the buyers clubs; AZT was not an option for all people with AIDS because of the drug’s “toxicities, astronomical costs, and diminishing therapeutic returns” [7]. People with AIDS were wary of the pharmaceutical companies, “They say the government and pharmaceutical companies are conspiring to play God with their lives — and are trying to make money by limiting the number of AIDS drugs on the market” [8]. Because people with AIDS did not trust large pharmaceutical companies or the toxic drug AZT, they decided to take “matters of treatment and experimentation into their own hands with a particular seriousness of purpose.” [9]. Government inaction, or lack of enough action, lead to the mistrust of the government, the FDA, and pharmaceutical companies by American citizens. Thus, infected citizens needed to look elsewhere for treatment. They turned to buyers clubs, whether creating them, participating in the organization of them, or simply by buying into them. The “professionals” were failing the infected American citizens, so the citizens took their lives into their own hands.

People with AIDS still wanted treatment and medication, but they did not trust the government or the corporations, so they turned to alternative routes. The buyers clubs were the alternative to buying into the pharmaceutical companies. The clubs provided remedy items such as milk thistle to more controversial drugs not approved by the FDA such as Compound Q, DDC, Alpha Interferon, and Peptide T [10]. The Dallas buyers Club provided as much as 112 chemicals to their members that were not approved treatments for HIV/AIDS [11]. These chemicals treated many different aspects of HIV/AIDS. Some products were used to combat the virus directly. DDC and Alpha Interferon interfered with the replication of the HIV virus within the infected person’s body, slowing the progression of HIV [12] [13]. Compound Q kills HIV infected cells, once again slowing the infection, not curing it [14]. Other products were used to treat opportunistic infections, improve immune system function, treat side effects of infections, or side effects from medications. Milk Thistle is thought to improve liver function, and many people taking medications for HIV experience liver damage [15]. Peptide T can interfere with HIV virus replication, slowing down the spread of the infection in the body, but also boosts immune system function and helps fight off opportunistic infections [16].

Many in the medical profession were avidly against the buyers clubs, but some gave quiet approval to the buyers clubs. Christopher Harris recounts the story of his diagnoses and follow-up doctor’s visits in a podcast by Story Corps. After particularly bad blood-test results, Christopher’s doctor told him “that there were some new drugs out there, they might help you but they weren’t available” [17]. Christopher asked what he could do, then his doctor informed him that there was a place in town that could get him the drugs. Christopher asked where, and the doctor said “I can’t tell you”. But then, Christopher described that a piece of paper fell from the doctor’s clipboard but failed to acknowledge that he dropped a piece of paper. On the paper was the phone number to gain access to the Atlanta buyers club. Christopher joined the buyers club and became a highly active member in distribution. Christopher’s doctor was one of many who believed in the mission of the buyers clubs, to provide infected people with medication, life, and hope. Dr. Chalmers was well-known amongst AIDS advocates in a negative way. He was very pro-FDA and very much against buyers clubs and self-medication. Dr. Chalmers believed in the FDA and its approved drugs to be the safest and best option available [18]. He was not alone as many doctors did not want their patients to medicate without professional supervision, but some might have had a different agenda. Advocates did not trust the pharmaceutical industry and medical professionals because they felt the FDA and the giant companies to be conspiring to make a profit from people with HIV/AIDS by keeping the market of approved drugs intentionally small [19]. The buyers clubs did not exist to make a profit, they existed to help people survive.

Many had issues with the buyers clubs because they were smuggling drugs that were not approved by the FDA. The FDA exists for the primary purpose of regulating food and drugs, and to guarantee the safety of what is provided in the United States. Thus, people trusted the authority of the FDA, believing that only FDA regulated drugs were safe enough to take. Medical professionals trusted only the FDA to guarantee safe and quality medicines. Dr. Chalmers was quoted in saying “They [buyers clubs] are liable to get impure or improperly regulated drugs, but they are also liable to take the wrong drugs at the wrong time” and “on the average they are liable to be harmed by indiscriminate treatment” [20]. Dr. Chalmers was not alone in this opinion, people within and outside of the medical profession believed that buyers clubs were entirely unsafe because they were unregulated by a trusted agency. However, all of the buyers clubs tested their products in labs before providing them to their members [21]. Drugs obtained by buyers clubs were first sent to labs to test for purity and analysis. The clubs wanted to ensure they were providing quality products that were not tainted with any unwanted ingredients. While the drugs provided by the buyers clubs were not regulated by an authority such as the FDA, the drugs still underwent screening because the clubs wanted to provide safe products to their members.

The ultimate fact was that the buyers clubs were providing drugs to people with a death-sentence disease, so taking potentially dangerous drugs was not seen as much of an issue. In an interview with the Dallas Life Magazine, Ron Woodroof stated, “Dammit … I don’t see how anything can be more toxic than HIV itself. I have taken chances that have almost killed me and I will keep on taking them. I have nothing to lose” [22]. The members of buyers clubs were looking for a chance to survive in a country that was  providing so little to help them. They would risk anything to live. Buyers clubs existed to provide people with HIV/AIDS a chance to live. Buyers clubs allowed people to take initiative when their government failed to do so, so people with AIDS trusted the buyers clubs. When the government and pharmaceutical companies failed to act in accordance to the needs of infected people, these people took charge of their medical care in the time of the epidemic. Bill Hunt was a member of the Dallas buyers club and he stated the clubs allowed one to be “managing your own survival” as he took the fate of his life away from the government and into his own hands by joining the buyers club [23]. He and many others believed they were alive because of the buyers clubs and taking their health into their own hands and away from the United States government and medical professionals.

[1] O’Connor, Bonnie Blair. “Vernacular Health Care Responses to HIV and AIDS.” In Healing Traditions: Alternative Medicine and the Health Professions, 109-60. University of Pennsylvania Press, 1995. http://www.jstor.org/stable/j.ctt3fhvd3.9, 143.

[2] Minutaglio, Bill. “Buying time: World traveler Ron Woodroof smuggles drugs — and hope — for people with AIDS.” Dallas Life Magazine, August 9, 1992. https://www.dallasnews.com/news/news/1992/08/09/buying-time-world-traveler-ron-woodroof-smuggles-drugs–and-hope–for-people-with-aids.

[3] Diedrich, Lisa. “Afterimage: ACT UP’s “Drugs into Bodies,” the Near Present.” In Indirect Action: Schizophrenia, Epilepsy, AIDS, and the Course of Health Activism, 199-216.

Minneapolis; London: University of Minnesota Press, 2016. http://www.jstor.org/stable/10.5749/j.ctt1hch824.15, 214.

[4] Park, Alice. “The Story Behind the First AIDS Drug.” TIME, March 19, 2017. http://time.com/4705809/first-aids-drug-azt/.

HRSA: Ryan White & Global HIV/AIDS Program. “1987: AZT Program Launches With Awards of $30 Million.” Living History. https://hab.hrsa.gov/livinghistory/timeline/1987.htm.

[5] U.S. Department of Health & Human Services. “A Timeline of HIV and AIDS.” HIV.gov. https://www.hiv.gov/hiv-basics/overview/history/hiv-and-aids-timeline.

[6] O’Connor, Bonnie Blair. “Vernacular Health Care Responses to HIV and AIDS.” In Healing Traditions: Alternative Medicine and the Health Professions, 109-60. University of Pennsylvania Press, 1995. http://www.jstor.org/stable/j.ctt3fhvd3.9, 111.

[7] Idid, 113

[8] Minutaglio, Bill. “Buying time: World traveler Ron Woodroof smuggles drugs — and hope — for people with AIDS.” Dallas Life Magazine, August 9, 1992. https://www.dallasnews.com/news/news/1992/08/09/buying-time-world-traveler-ron-woodroof-smuggles-drugs–and-hope–for-people-with-aids.

[9] O’Connor, Bonnie Blair. “Vernacular Health Care Responses to HIV and AIDS.” In Healing Traditions: Alternative Medicine and the Health Professions, 109-60. University of Pennsylvania Press, 1995. http://www.jstor.org/stable/j.ctt3fhvd3.9, 113

[10] Minutaglio, Bill. “Buying time: World traveler Ron Woodroof smuggles drugs — and hope — for people with AIDS.” Dallas Life Magazine, August 9, 1992. https://www.dallasnews.com/news/news/1992/08/09/buying-time-world-traveler-ron-woodroof-smuggles-drugs–and-hope–for-people-with-aids.

[11] Ibid.

[12] Ibid.

[13] Utay NS, Douek DC. Interferons and HIV Infection: The Good, the Bad, and the Ugly. Pathogens & immunity. 2016;1(1):107-116. doi:10.20411/pai.v1i1.125.

[14] Frontline and WGBH Educational Foundation. “The Trial of Compound Q.” Frontline: The Age of AIDS. Last modified May 30, 2006. https://www.pbs.org/wgbh/pages/frontline/aids/docs/compoundq.html.

[15] International Association of Providers of AIDS care. “Silymarin (Milk Thistle).” The AIDS InfoNet. http://www.aidsinfonet.org/fact_sheets/view/735.

[16] U.S. Department of Health and Human Services. “Drugs: Monomeric DAPTA.” AIDS Info. Last modified June 29, 2017. https://aidsinfo.nih.gov/drugs/528/monomeric-dapta/0/patient.

[17] Bonshahi, Mitra, and Kerrie Hillman. “I had a child to raise and I just could not die right then.” StoryCorps. Podcast audio. December 1, 2017. https://storycorps.org/listen/christopher-harris-171201/.

[18] Minutaglio, Bill. “Buying time: World traveler Ron Woodroof smuggles drugs — and hope — for people with AIDS.” Dallas Life Magazine, August 9, 1992. https://www.dallasnews.com/news/news/1992/08/09/buying-time-world-traveler-ron-woodroof-smuggles-drugs–and-hope–for-people-with-aids.

[19] Ibid.

[20] Ibid.

[21] Ibid.

Dockterman, Eliana. “The True Story of Dallas Buyers Club.” TIME, November 8, 2013. http://entertainment.time.com/2013/11/08/the-true-story-of-dallas-buyers-club/

[22] Minutaglio, Bill. “Buying time: World traveler Ron Woodroof smuggles drugs — and hope — for people with AIDS.” Dallas Life Magazine, August 9, 1992. https://www.dallasnews.com/news/news/1992/08/09/buying-time-world-traveler-ron-woodroof-smuggles-drugs–and-hope–for-people-with-aids.

[23] Ibid.

Further Reading:

Brier, Jennifer. Infectious Ideas: U.S. Political Responses to the AIDS Crisis. N.p.: The University of North Carolina Press, 2011.

Shilts, Randy. And the Band Played On: Politics, People, and the AIDS Epidemic. 20th Anniversary ed. N.p.: St. Martin’s Griffin, 2007.

Elbaz, Gilbert. “Beyond Anger: The Activist Construction of the AIDS Crisis.” Social Justice 22, no. 4 (62) (1995): 43-76. http://www.jstor.org/stable/29766907.