AIDS Buyers’ Clubs: Illicit Activism During Legal Inactivity

By Hailee Bilimoria
Originally published March 22, 2018

  In the early 1980s in the United States (US), what was deemed the world’s “new plague” caused the death of thousands and instilled fear into the lives of millions (Hanks et al.). Throughout US history, Acquired Immunodeficiency Syndrome (AIDS) sentiments changed drastically, partly due to the story of Ryan White. In 1984, at the age of 13, hemophiliac Ryan White found out that he contracted the Human Immunodeficiency Virus (HIV), the virus that causes AIDS, through one of his frequent and necessary blood transfusions. Once diagnosed, Ryan was faced with excessive discrimination in his community (“Ryan White”). With misconceptions about the disease running high, many did not want Ryan to attend public school alongside the other children (Hanks et al.). Even when the Indiana State Board of Health stated it was completely safe, the school board, teachers, and even the principal continually fought to keep him out. Obscenities such as “fag” were written on his locker and inside his folders (Hanks et al.). As active church members, the Whites were shocked to find that officials and patrons of their local church refused to shake Ryan’s hand once he became HIV positive. At a very young age, Ryan gained national attention as an AIDS activist and poster child, sparking a revolution of change and acceptance. The Ryan White Foundation became the first HIV/AIDS foundation dedicated to the education of young people. At the age of 16, White testified before the President's Commission on his experiences with AIDS bigotry and the many financial difficulties that came along with treatment. The expenses of medications were a very common problem among AIDS patients at the time (“Ryan White”). Although he was no expert, Ryan saw a need for change and was able to inspire it through his persistence in activism. Similarly, buyers’ clubs, distributors of cheap, illegal or Federal Drug Administration (FDA) unapproved drugs, were great catalysts of change during the eighties and nineties in the US (Epstein 223-224). Buyers’ clubs played an integral role in the 1980s and 1990s by helping treat AIDS patients and catalyzing the approval of proper medication by the FDA for AIDS patients. Buyers’ clubs helped solve the financial problem that many AIDS patients, including Ryan, found problematic. They were also a unique basis in that they provided a knowledgeable resource to which physicians would often refer. Lastly, the drugs advocated by AIDS activism groups were highly influenced by the results of buyers’ clubs.
  In the US, the AIDS crisis began in the early 1980s in San Francisco, when doctors were finding that young, sexually active homosexuals were coming down with pneumocystis carinii pneumonia (PCP) and kaposi’s sarcoma, a rare form of skin cancer. These ailments were quite irregular for individuals of such a young age. Finally, Dr. Michael Gottlieb of the University of California Los Angeles began to make connections to these illnesses and a compromised immune system. Soon, these individuals were diagnosed with something new: Acquired Immunodeficiency Syndrome. AIDS is the condition in which the body has fewer than two hundred CD4 T-lymphocytes within a cubic millimeter of blood, which causes a severe and fatal breakdown of the immune system (Hanks et al.). Soon thereafter, the Human Immunodeficiency Virus (HIV) was found to have been the cause of AIDS. The origins of HIV are unknown, but it is most likely that the virus began somewhere in sub-Saharan Africa because most of its subtypes exist there. The virus is transmitted through vaginal, anal, or oral sexual intercourse with an HIV positive individual. Sharing needles and blood transfusions are other common ways the virus can be spread (Feldman and Miller XXVII). AIDS was much more developed among gay men because they were more likely to have unprotected sex with different partners. This is also because HIV-B, the subtype of the virus found in North America and Europe, is more easily spread through anal intercourse than it is though vaginal intercourse due to the delicate lining of the rectum (Feldman and Miller XXXII). This commonality among homosexuals in California became something that would cause a great deal of ignorance, fear, violence among thousands in the US.
  The development of the AIDS epidemic instilled fear and caused violent discrimination against homosexuals within US society. Between 1981 and 1988, the initial years of the epidemic, roughly 57,000 cases of HIV/AIDS were reported and 32,000 of them resulted in death (Norton et al.). Because AIDS was especially rampant among homosexuals, it was commonly believed that AIDS was “a gay man’s disease” (qtd. in Norton et al. 905). As this “modern day plague” continued to spread and little progress was made, violence and discrimination against the gay community rose dramatically. For instance, Houston mayoral candidate Louie Welch introduced a “four part” answer to combating the spread of AIDS on television. When asked of his plan, he responded with, “Four points? I can’t remember the two of ‘em. One of them was to shoot the queers” (Hanks et al.). There were also many misconceptions about the spread of AIDS. There was no evidence that AIDS could be spread through shaking hands, sharing utensils, or using the same restrooms and water fountains with HIV positive individuals (Feldman and Miller XXX). However, evident in Ryan White’s experiences in Indiana, the public still discriminated against people with AIDS (PWAs) out of fear of infection. A 1985 Los Angeles poll found that 50% of Americans favored the quarantine of AIDS patients, 48% favored special identification of AIDS patients, and 15% said AIDS patients should be tattooed (Hubbard et al.). Many used the fear of Americans as a platform to promote religious homophobic beliefs. Reverend Jerry Falwell of the Christian Right and Republican political organization known as the Moral Majority said, “a man reaps what he sows,” indicating AIDS was a consequence of homosexuality (qtd. in Norton et al. 905; Hanks et al.). The rampant spread of HIV/AIDS destroyed much of the gay activist work that had been done in the past decades by instilling distrust, fear, and hatred of homosexuals into the American people. Homosexuals became a scapegoat during this epidemic, and the entire country would have to pay.
  The taboo that surrounded the AIDS epidemic negatively impacted the way the government initially responded to the crisis. Many politicians were hesitant to help with the AIDS crisis because of the epidemic’s affiliation with homosexuals (Norton et al. 905). In particular, President Ronald Reagan’s lack of leadership on the front to fighting AIDS as well as his concessions to pharmaceutical companies when it came to setting federal regulations impeded progress and resulted in corruption. During his presidency, Reagan was very hesitant to publically mention AIDS: Associate Commissioner for Policy and Planning William Hubbard perceived that “the Reagan administration didn't want to talk about AIDS for a long time.” (qtd. in Richert 469). He ignored his wife, who pushed him to endorse the use of prophylactics to protect against the disease (Richert 469). After Reagan decreased federal regulations on pharmaceuticals, the industry’s profits skyrocketed. The companies greatly benefitted from the strong relationship that formed between themselves and the FDA (Richert 480-482).  For instance, controversy surrounded the first and, for a while, the only FDA approved AIDS drug: azidothymidine (AZT). Initially, dissention emerged when it was revealed the pharmaceutical company Burroughs Wellcome refused to engage in the development of AZT until the profitability of the drug was confirmed. It was common for pharmaceuticals to initially evade responsibility and take advantage of public funding, close relationships with regulators, and the relaxed FDA standards during the health crisis (Richert 481). Reagan’s lack of leadership on the front to fighting AIDS proved problematic for the thousands that were suffering from the disease. The government and FDA’s inaction called for AIDS activists’ action, and they did so through the implementation of buyers’ clubs.
  Buyer’s clubs were a way for people to get cheaper, FDA unapproved drugs to treat their terminal illness. During the AIDS epidemic, the FDA did not make much progress on the approval of AIDS medications. The FDA ran very few clinical trials, and the ones they did were very exclusive. For instance, there were only 282 spots open for the AZT phase II trial. Many were turned away because their CD4 count was above five hundred, and others were turned away for having kaposi's sarcoma or for refusing to go off their anti-PCP drugs (France 237). In other words, many PWAs were unable to take the only available legal drugs because they were too sick. There were also many clinical trials that caused great amounts of controversy due to their methods of data collection. During the infamous clinical trials known as the ACTG 016 and ACTG 019 trials, which tested AZT on mildly symptomatic and asymptomatic patients respectively, dissention arose as people found out about the high amount of people on placeboes. These people became known as the “sacrificial lambs” of the trials and, as expected, died at alarmingly high rates (Epstein 214). Once some drugs became legal, many PWAs could not afford them because of their extremely high prices and their lack of insurance coverage. For instance, in 1996, the release of protease inhibitors was bittersweet, for a year of treatment would cost anywhere from $70,000 to $150,000 (Feldman and Miller 41-42). The little work that the FDA and the US government did do to help PWAs was not enough to help the majority of patients who could not afford the available treatments and did not have time to wait for the bureaucracy’s slow processes.
  Comparatively, buyers’ clubs helped the AIDS community immensely by providing a variety of unapproved drugs for low prices. Michael Callen and Tom Hannan founded the PWA Health Club in 1987 with the AIDS researcher and physician Joseph Sonnabend. It was the first of many buyers’ clubs in the United States. They accepted everyone for a nominal fee and provided drugs from all over the world for low prices. For instance, the drug AL271 can sell illegally for $155-$175 per kilogram through buyers’ clubs when it would legally sell for up to $1300 per kilogram in Israel (Okie). The PWA Health Club would also provide members with substantial information about the drugs they supplied without being partial or endorsing a specific treatment plan. They were often very particular about what drugs were made available to the public through their club to ensure the safety and well being of their members (Span). Tom Cunningham was a member who took an antibiotic, clarithromycin, a year before the FDA approved it, as well as dideoxycytidine (DDC), for which he did not meet the criteria to get in a clinical trial. When describing his experience with the PWA Health Group, he said, “I never felt like I was buying heroin or anything dangerous…[the PWA Health Group] always helps you make your choices in an informed way” (qtd. in Span). Because of their accessible, cost effective, and healthy medical alternatives, buyers’ clubs became extremely successful. In 1992, an estimated $1.25 million in AIDS drugs was to be bought by roughly five thousand customers from the PWA Health Group (Span). The idleness of the FDA provided a need for citizen activism and self care that the AIDS community delivered in a very effective way.
The way that buyers’ clubs were able to conduct their business exemplified the unique sophistication of the AIDS movement. They were the first to become an alternate basis of expertise on the subject (Epstein 8). When the political and medical fields failed them, PWAs and AIDS activists educated themselves in order to enact their own change. Mark Harrington was a “de facto” leader of the activist group AIDS Coalition to Unleash Power (ACT UP) and became an important AIDS researcher and policy director (Epstein 230). Harrington had no scientific background other than what he taught himself. He created a 50 page glossary of words to know about AIDS, which he then sent out to all ACT UP activists. Harrington’s actions call attention to how dedicated activists were and how important they became in the medical field, despite their lack of education. PWAs and activists needed to take on a more directly involved and educated role in comparison to past movements due to the absence government research and progress in the field.
  Through the commitment and persistence of activists like Harrington, buyers’ club activists and the AIDS movement became a large basis of knowledge that created a strong influence on American society. A recurring pattern of inaction by the US government angered PWAs who did not have the time to wait for legal treatments. The dedication and education of AIDS activists created a new group of experts that were able and willing to aid those in need. The intellectual prowess of buyers’ clubs became so extensive that their outreach began to reach unexpected demographics. Physicians began to acknowledge the skills of buyers’ clubs directors and specialists as they became desperate to help their own patients with limited resources. For instance, one New York City buyers’ club director told a reporter of the exponential progress he had made. “When we first started out, there were maybe three physicians in the metropolitan New York area who would even give us a simple nod of the head. Now, every day, the phone rings ten times, and there’s a physician on the other end wanting advice. [From] me! I’m trained as an opera singer!” (qtd. in Epstein 229) Some physicians even risked their livelihoods by discreetly recommending buyers’ clubs to AIDS patients. When diagnosed with AIDS, Christopher Harris was told the only drugs that could save him were illegal in the US. However, his physician indirectly gave him the number of the Atlanta Buyers’ Club by dropping a slip of paper on the floor with their phone number on it (Greene and Harris). In addition to enabling patients of physicians, buyers’ clubs were on the forefront of pushing safe drugs onto the market by any means possible. After peddling the drug through PWA Health Group, the group’s co-founder Joseph Sonnabend worked hard to try and get Praxis Pharmaceuticals to make the effective and popular drug AL271 for his patients after shipments fell through. Praxis initially declined, prompting Sonnabend to bootleg to create his own batch for patients. Although he was never able to get the formula exactly right, many different clubs followed in his footsteps and distributed their own versions. Patients were very receptive to these faulted versions, for the assumption was that taking them was better than taking nothing (France 255-263). The investment of trust in buyers’ clubs by physicians and patients throughout the US further accentuates how the restrictive policies of the FDA and Reagan administration were not enough to properly help the epidemic. As the mortality rate rose to one AIDS related death every half hour, the FDA’s reluctancy to legalize drugs created an outcry for additional assistance in which buyers’ clubs fulfilled (Hubbard et al.). The excessive knowledge of buyers’ clubs activists helped the guerilla clinics fulfill the role that the hesitant FDA left open.
  The effectiveness and success of buyers’ clubs and AIDS activists provoked some political actions of the US government during the AIDS epidemic. As buyers’ clubs’ popularity continued to grow, the FDA would sometimes turn a blind eye to their illicit activities. For instance, activist group ACT UP felt that the FDA was the roadblock in the way of their access to medication. To comply with their protests, the FDA came up with a new plan: the Treatment Investigational New Drugs (IND) Plan (Epstein 222). The treatment IND regulation made it possible for individuals with terminal illnesses to import a three months supply of unapproved drugs, with a doctor’s supervision, into the country. This helped arranged an FDA noninterference practice with buyers’ clubs. In summary, this was a “tip of the hat” from the FDA to the buyers’ clubs (Span). Although their actions were helpful in this instance, the government did limit progress on buyers’ clubs’ progress. PWA Health Group’s Sonnabend and Callen created a network of individual physicians and their patients known as the Community Research Initiative. It was equipped with a scientific advisory committee, research department, nurses, and a staff of skilled administrators. The CRI was able to recruit doctors that represented roughly two thousand AIDS patients that were eager to join clinical trials; an amazing feat considering Dr. Anthony Fauci, the head of the National Institute of Allergy and Infectious Diseases (NIAID), was only able to enroll a few hundred in his own trial (France 288). After receiving a $400,000 grant from the pharmaceutical company Lymphomed, CRI was ready to begin their own clinical trials. However, Dr. Fauci refused to issue the standard trial guidelines to the group and reluctantly set up a subpar committee that considered recommendations for the initiative. He justified his inaction by telling the public that it was the responsibility of the physicians to keep up with medical journals (France 289). The government responses to buyers’ clubs’ actions towards helping the AIDS crisis exemplify the government’s growing willingness to cooperate and help PWAs. However, it is evident that their support was limited, and what the government did provide was not enough to satisfy the needs of the public. The admirable actions of the buyers’ clubs of the twentieth century evoked minor government responses, although minor, in the fight against AIDS.
  By 1988, the infrastructure surrounding buyers’ clubs, advocacy groups, and worldwide treatment publications had been solidified and spread medical knowledge about AIDS throughout this system: and their scope of influence was only getting larger. The role of buyers’ clubs during the AIDS crisis was essential to the treatment of patients and the approval of medication. Before their strong influence, the ignorance surrounding AIDS limited political action surrounding the crisis. However, the increase in direct action activism by AIDS activists and buyers’ clubs not only helped PWAs treat their illness but also caused the government to take more action. The changes brought by the AIDS movement are evident in the medical progress of the AIDS movement as well as the cultural impact on US society. For instance, ACT UP’s first national demonstration, known as “the seizure of the FDA,” attracted national attention and forced the legalization of more drugs at a quicker rate (Hubbard et al.). Many of the drugs that were originally sold through buyers’ clubs, such as DDC, interferon, nonnucleoside protease inhibitors, and more, became approved in later years and continue to help people today (Ungvarski 27-28). Buyers’ clubs also introduced combination therapy, which would “in theory delay the development of resistance while, perhaps, permitting lower doses of each drug to be used, thus reducing the exposure of the patient to toxic side effects” (Epstein 265). In 1996, the FDA approves many different options under this method, referred to as “highly active antiretroviral therapy,” or HAART (Ungvarski 29). The increased accessibility of these treatment plans for AIDS patients has effectively ended the epidemic in the US. From 1992 to 2000, the mortality rate dropped roughly 42% and the amount of people exposed to HIV dropped over 50% (“Update: AIDS — United States, 2000”). While the progress of AIDS has improved greatly in the US, it is clear that the impoverished developing countries have been less fortunate in the fight against the virus: HIV is rapidly expanding in Africa, Asia, and Russia. Dr. Gottlieb predicts that one million people in developing countries will die from AIDS within the next decade. He aggressively advocates for the accessibility of medications and vaccinations for these countries while drawing parallels to the AIDS situation that plagued the US in the early 1980s (Gottlieb 1790). The contributions of buyers’ clubs during the US AIDS crisis have greatly contributed to the current available treatments for AIDS patients and may provide solutions for developing countries in the foreseeable future.

Works Cited

Epstein, Steven. Impure Science: AIDS, Activism, and the Politics of Knowledge. Univ. of
California Press.

Feldman, Douglas A., and Julia Wang Miller. The AIDS Crisis: A Documentary History.
Greenwood Press, 1998.

France, David. How to Survive a Plague: The Story of How Activists and Scientists Tamed AIDS.
Picador, 2017.

Greene, David, and Christopher Harris. “How A Slip Of Paper Impacted An AIDS Diagnosis.”
Story Corps, National Public Radio, 1 Dec. 2017,
www.npr.org/templates/transcript/transcript.php?storyId=567516084. Accessed 16 Mar. 2018.

Gottlieb, Michael S. “AIDS--Past and Future.” ProQuest: New England Journal of Medicine, 7
June 2001, sproxy.glenbrook225.org:2279/docview/223947789/fulltextPDF/84EB9E
E87F214638PQ/11?accountid=5352.

Hanks, Tom, et al. The Eighties: The Fight Against AIDS. CNN, 2016.

Hubbard, Jim, et al. United in Anger: A History of ACT UP. Amazon Prime, 2012,
  www.amazon.com/United-Anger-History-ACT-UP/dp/B00IKT4VBC.

Norton, Mary Beth, et al. A People & A Nation: A History of the United States. 9th ed.,
  Wadsworth Cengage Learning, 2010,
  bookshelf.vitalsource.com/#/books/9781133171683/cfi/0!/4/4@0.00:45.0.

Okie, Susan. “AIDS Sufferers Buying Hope.” ProQuest, 2 Apr. 1988,
  sproxy.glenbrook225.org/loginurl=https://sproxy.glenbrook225.org:2279/docview/13978
  7436?accountid=5352.

Richert, Lucas. “Reagan, Regulation, and the FDA: The US Food and Drug Administration's
  Response to HIV/AIDS, 1980-90.” Canadian Journal of History, vol. 44, no. 3, 2009, pp.
  467–488. Proquest, doi:10.3138/cjh.44.3.467.

"Ryan White." Encyclopedia of World Biography, vol. 19, Gale, 1999. Research in Context,
  http://sproxy.glenbrook225.org:2251/apps/doc/K1631007390/MSIC?u=gotitans&sid=MS
  IC&xid=43d41a28. Accessed 7 Mar. 2018.

Span, Paula. “Pharmacy For the Desperate; AIDS Drug Buyers' Clubs, Dispensing Untested
  Hope.” The Washington Post, 8 Apr. 1992. ProQuest.

Ungvarski, Peter J. “The Past 20 Years of AIDS.” The American Journal of Nursing, vol. 101,
  no. 6, 2001, pp. 26–29. JSTOR, JSTOR, www.jstor.org/stable/3522582.
  “Update: AIDS — United States, 2000.” Morbidity and Mortality Weekly Report, vol. 51, no.
  27, 2002, pp. 592–595. JSTOR, JSTOR, www.jstor.org/stable/23313182.