Fighting the Epidemic- Grass-root HIV support groups in the 80’s

By Sam Drabkin

Time magazine cover on AIDS (1986)

Catherine Drabkin began working as the director of the Charlottesville AIDS support Group when she was 26. Fresh out of graduate school, Drabkin started in 1989 and would act as the director there for there years.  “In the fall of 89 I started…it was my first real job out of college” Drabkin explained “the position was the first staff position that they hired, they had gotten a grant from the state of Virginia…It was really at the time when federal funding was becoming available for AIDS organizations.” [1]  This memory of federal involvement in the struggle against the HIV epidemic helps document historian H.W. Brand’s insights about the evolving struggle over AIDS funding. Brand describes how President Reagan broke his silence on the issue in the mid 80’s explaining “Reagan’s administration had tried to ignore the disease….But as the gravity of the disease became undeniable, Reagan changed his position.  He increased the federal budget for AIDS research, to half a billion dollars over 5 years.” [2] Drabkin however also provides more detailed information about the crisis in its later years, and thus provides a narrative of the changing of the disease for the federal government and in the public eye.

While it certainly existed in the 1970’s it was not until 1981 that AIDS was identified as disease in itself. Victoria Hardin documents this in her book AIDS at 30 explaining ” In December 1981 two physicians at Duke University reported a case of the new disease in The Lancet and proposed the name ‘gay compromise syndrome’…the first reported cases all described gay males and indelibly linked AIDS in the minds on many as a disease of homosexual men” [3] This connection between AIDS and the gay community, despite the disease’s ability to affect any demographic, would shape the federal and social response to the disease in the coming years.  The equivalence of AIDS with the gay community made the conservative Reagan administration sluggish in its response to say the least.  According to James Gillet, “The institutional response to AIDS in the early 1980’s was essentially nonexistent given the gravity of the epidemic, despite an awareness of AIDS among those in the CDC and the mass media”[4]  However despite the silence people were getting sick people were getting sick, and dying. By the end of 1982 an estimated 618 people had died. By the end of 1983 that number had more than tripled [5] Despite the rising death tolls and media coverage at this point Drabkin didn’t pay much attention to AIDS during these first years. “I didn’t think about AIDS very much before I started working there [The AIDS Support Group]” said Drabkin “I was still in college”[6] The victims of this disease however did not sit idly as this new threat ravaged their community. Soon AIDS victims, or as they preferred people with AIDS, began marching and forming the support groups that would be precursors to ones like the one Drabkin directed.  In 1984 the death toll rose by another 3000 more than doubling the deaths in 1983.[7]  The enormous casualties combined with the death of famous movie star, and friend of Reagan, Rock Hudson finally became too much for the institution to ignore.  Hudson’s death marked a turning point in federal policy on AIDS and funds were made available for research and treatment.  The battle however was far from over, as Brands notes. “Answers came slowly. The causative agent was identified…,” he writes, “but an effective treatment, let alone a cure, was elusive. The death toll mounted to 12,000 per year in 1986 and 20,000 in 1988.”[8]

This was the climate in the U.S. when Drabkin began working as director of the AIDS Support Group. In fact, this new attention by the Reagan Administration was what allowed Drabkin to begin working at the support group. “I came in on one grant but we applied for others and suddenly we had, actually a good bit of money that we could use to do, not only services to people with AIDS but also educational outreach for prevention.” Drabkin recalled “The organization ended up growing really fast so I moved from a volunteer coordinator position to a executive director position and hired additional staff members.”[9]  The mid to late 1980’s also brought another sign of hope: AZT. In 1987 an anti-HIV drug called AZT was approved by the Food and Drug Administration to use in America. [10]  However the drug, while effective, was expensive and often unavailable. The price for AZT in 1989 was nearly $200 days for a seventeen day supply and to be fully effective it had to be taken at that rate for the rest of the patient’s life.  The cost amounted to nearly $10,000 a year. This price made it nearly impossible for many people with AIDS.  One scholar notes, “AIDS activists protested that Burroughs Wellcome was ‘profiteering’ on the misery and death the disease caused…Perhaps the most galling aspect of Burroughs Wellcome’s price tag for AZT was that taxpayers had essentially funded development of the drug but had no control over the pricing.”   Eventually the tireless actions of the activist group ACT UP applied enough pressure on Burroughs Wellcome that they were forced to significantly lower the prices in 1989 to “approximately $6500.”[11]  Even with these lower prices however the prices remained out of reach for many people with AIDS  “I remember when it came out,” Drabkin stats.  “You know I think it was still considered pretty experimental. I think there was probably a sense of relief that, you know, you had more than 18 months to live but it wasn’t really seen as a cure. It was certainly something people fought eagerly to get a hold of…It was really expensive and the organization would sometimes try to help people get the funds,” but she adds, “I remember that it was very hard to get.” [12]   This moment highlights an interesting dichotomy within the anti-AIDS movement between local support groups and more action oriented activist groups. Drabkin recalls, “You know there was a big AIDS group up in Washington D.C. and they did marches where the organizers would intentionally get arrested and you know that’s not really in my personality [laughs] I don’t know think it probably did make a difference, especially for funding that came through but I felt like I could serve better by keeping my head down and just working in the local community” [13]

One of the largest obstacles facing Drabkin’s local work was the stigma that had been attached to AIDS since its discovery. Homophobia had long been mixed with fear of the disease and many spoke of the epidemic as if it were god willed. Brands reports, “By the time the disease had a new name-AIDS-it had been labeled the ‘gay disease’. Christian conservatives pointed the finger of blame at the regnant liberalism. ‘Aids is God’s judgement on a society that does not live by His rules,” Jerry Falwell intoned.” [14]  These feelings was the first thing Drabkin addressed when interviewed in a 1989 newspaper article saying “All people are possible AIDS victims —  when you rely on a stereotype you think you’re safe from the disease, but you aren’t.”  26 years later in 2015 Drabkin gave a more complete explanation aboiut the stigma suffered by people with AIDS. “I think in the public view, at least in our community, was that it was something that happened to ‘those’ people. So there really was a stigma. When we ran our support groups we never revealed the location where they were meeting because we didn’t want someone to, you know, come into either spy on who was coming in to the support group and broadcast the members or sort of harass them…I think certainly in the three years I was there was less of a stigma, and within another 3 to 5 years it [acceptance] became much more prevalent as the disease spread outside of the gay community.”[16]

When asked what it was like to work in AIDS relief Drabkin admitted that, while rewarding, it was exhausting work. “We were constantly working with people who were dying…there was the pressure there, that was always there….I was pretty young, I guess i didn’t appreciate what sort of toll that could take on a person, or a staff. So when I quit I had the excuse that I was pregnant and that I was going to stay at home and have the baby but I think there was a certain amount of relief because it had been a stressful job, and that wasn’t something you really acknowledged.” [17]

[1] Phone interview with Catherine Drabkin, March 25, 2015.

[2]  H.W. Brands, American Dreams: The United States Since 1945 (New York: Penguin Books, 2010), 255.

[3] Victoria Hardin, AIDS in 30 (Dulles, Virginia: Potomac Books, 2012), 23.

[4] James Gillet, A Grassroots History of the AIDS/HIV  Epidemic in North America (Spokane, Washington: Marquette Books LLC), 9.

[5] “Thirty Years of HIV/AIDS: Snapshots of an Epidemic.” AmfAR. Accessed May 1, 2015. http://www.amfar.org/thirty-years-of-hiv/aids-snapshots-of-an-epidemic/.

[6] Drabkin

[7] AmfAR

[8] Brands. 255.

[9] Drabkin

[10] Brands. 256.

[11] Hardin. 135-136

[12] Drabkin

[13]Ibid.

[14] Brands. 254.

[15] Clarke, Christy. “Education Provokes Community AIDS Awareness.” The Cavalier Daily [Charlottesville] 11 Apr. 1989: 6. Print.

[16] Drabkin

[17] Ibid