What role did physicians play in advocating for patients and combating misinformation about HIV/AIDS during the initial years of the pandemic?

by DukeGyug

Within Canada, there is a growing idea that being a health advocate is an integral part of being a medical expert. This stems from the observation that promoting good health policy and combating misinformation about medical issues are important measures in assisting patients in working towards good health. My understanding is that this is relatively new idea in the medical world and is certainly a hot button issue given the current pandemic, but I am curious about the actions and advocacy of physicians during the onset of the HIV/AIDS pandemic.

Were physicians working toward combating stigma and misinformation during this time and are there any particular examples of physicians leading effective campaigns or messages that were successful and could possibly help inform our current pandemic struggles.

warneagle

Absolutely. Physicians were far more active in advocating for investment in education and research than politicians and public health officials during the early phase of the AIDS epidemic, at least in the United States. It's worth remembering that when the first cases of AIDS were officially reported in the US (5 June 1981), we were just a few months into the first Reagan administration, which was committed to slashing domestic spending, including funding for public health. Not only did the Reagan administration refuse to provide funding for AIDS research or promote AIDS education, they actively ignored the burgeoning epidemic; Reagan himself didn't even say the word "AIDS" publicly until 1985, four years into the epidemic; even when Reagan did eventually mention it, he vacillated on the question of whether children with AIDS attending school was safe or not (even though it was already known that casual contact was not a risk for transmission), after a White House lawyer named John Roberts (yes, that one) told him not to reassure the public on the issue.

The Surgeon General at the time, C. Everett Koop, who was otherwise known as a staunch social conservative, was the only administration official to argue for explicit sex education and drug treatment programs to stop the two main routes of transmission. He later stated that he believed that the administration refused to act on AIDS due to prejudice against gays from the top down. Public health bodies like the CDC and NIH only had bare bones funding to conduct epidemiological and virological research into the virus, and the Department of Health and Human Services basically stonewalled their funding requests (the Secretary of HHS at the time, Margaret Heckler, was a political appointee with no medical expertise, so most of the serious collaboration between physicians and HHS went through the Assistant Secretary, Dr. Edward Brandt). The national public health bodies, who would usually be responsible for providing information to the public about prevention and treatment, had essentially no resources for these tasks for most of the first decade of the epidemic.

So with the administration refusing to act or even provide a basic level of public education, the task of spreading information about AIDS prevention and pressuring the government and pharmaceutical companies to research treatments fell to the physicians working on the front lines of the epidemic (through organizations like amFAR), as well as the actual patients themselves (through organizations such as ACT UP). Several physicians helped to produce some of the earliest prevention literature (pamphlets like "How to Have Sex in an Epidemic", published in 1983), as well as spreading information about prevention through other channels (e.g. convincing the media to report that using condoms could prevent transmission). Both physicians and patients were active in lobbying Congress for additional funding for AIDS (mainly in the House, where the Democrats still held a large majority and some Representatives, like Henry Waxman, were sympathetic to the gay community's concern and worked with California physicians to come up with funding proposals). However, these efforts were hamstrung by the administration's refusal to give even a modicum of funding to prevention efforts, as well as obstruction from Congress (including Jesse Helms' infamous bill that banned the use of federal funds for AIDS prevention materials that explicitly discussed sex between men).

The roadblock from the administration forced both the physicians and the patients to find other ways to deal with the epidemic. A group of physicians and other health professionals in San Francisco created what was known as the "San Francisco model" of AIDS care, which included conventional medical treatment as well as psychosocial support for the patients (and their partners, at a time when most hospitals refused to allow non-relatives/spouses to visit patients). Meanwhile, many of the patients themselves became involved in activism to pressure pharmaceutical companies to develop more drugs to treat AIDS and to lower the prices of those already on the market (the most famous being ACT UP shutting down trading at the New York Stock Exchange to protest the high price of AZT, the first promising treatment for AIDS). Public health officials (including the CDC) were also involved in prevention actions, such as trying to convince the blood banks and pharmaceutical companies that manufactured hemophilia clotting factor that transmission of AIDS through blood products was a serious risk and that screening of donors and donated blood was necessary; these risks were identified as early as 1982, but restrictions on blood donation by known AIDS risk groups weren't implemented until 1985, by which time a large portion of the hemophiliac population in the US were already infected (Canada had similar issues, as did other countries, like France). Obviously this answer is US-centric, but similar patient and physician activist movements existed in Canada, even though the Canadian government took the problem much more seriously than the US did. The AIDS epidemic created a model for how physicians and patients can involve themselves in advocating for their own needs during a health crisis, just as much as it created a model for how not to respond to a health crisis at a governmental level.

Sources:

Randy Shilts is obviously a problematic source for a number of reasons, but And The Band Played On does a very good job of documenting the responses of physicians during the early stages of the epidemic (and the intransigence they experienced from the federal government).

The UCSF AIDS Oral History Project has interviews with several of the doctors who were involved in treating the earliest AIDS patients, so if you want to hear more "from the horse's mouth", so to speak, it's a great resource.