What ME Activists Can Learn from the AIDS Crisis

I read “How To Survive A Plague: The Inside Story of How Citizens and Science Tamed AIDS” by David France to learn lessons from the AIDS movement that could help ME activism, and to summarize it for people without the energy and/or time to read it. The book tells an amazing story but it is long (515 pages) and very difficult to capture succinctly. My writeup is split into three parts:  (1) a (ridiculously) brief overview of France’s book; (2) a section focusing on the history most pertinent to the ME community; and (3) my take on the lessons learned that appear to be most relevant to ME advocacy.
For a fuller understanding of what the AIDS movement accomplished, how the National Institutes of Health (NIH) perceived the activists, and how those lessons can be applied today, it is important to look at the other resources listed at the end and, especially, to read the HCM Strategists case study.  Also, be aware that my summary, like France’s book, largely reflects the perspective of gay white males from New York City. For example, he does not include much information about the crisis among injected drug users or the very significant struggle over women’s health issues.

Brief Overview of the Book

June 1981 is considered the beginning of the epidemic; that’s when the Centers for Disease Control (CDC) published its first Morbidity and Mortality Weekly Report about what became later known as AIDS. The illness came to the attention of the medical community quickly. One reason is that many gay men were being treated for sexually transmitted diseases so doctors became aware of Kaposi’s sarcoma and other opportunistic infections.  Further, many of the doctors treating gay men were themselves gay. And then, of course, patients began dying rapidly.
People with AIDS (PWA) were visibly/horribly ill and often dead within weeks or months of diagnosis.  They were often excluded from hospitals due to rampant prejudice and fear.  Yet, though the crisis was exploding exponentially, it was largely ignored outside the gay community, was not acknowledged by President Reagan or his administration, and regarded by many as “just desserts” for being gay.
CDC began tracking infections fairly quickly and Robert Gallo at NIH and Luc Montaigner in France started researching retroviruses as the potential cause. Within a few years, Gallo and Montaigner discovered the virus that causes AIDS.  In 1985, a blood test for detecting it became available. The focus at NIH shifted to finding treatment and the budget increased from $5 million in 1982 to $85 million in 1985.  In 1987, the FDA approved AZT for treating AIDS, but it was not a cure, had serious side effects, and did not work for everyone.  However, NIH remained focused on AZT at the expense of other drug options and also ignored the desperate need for drugs for the opportunistic infections that were the leading causes of death.  Both NIH and the FDA were very slow to approve drugs that community research/experience had established as effective.  With the discovery of a new class of drugs –  protease inhibitors-  in 1996, AIDS was no longer a death sentence.  Over 700,000 people had died in the U.S. by the end of 2012.
In 1982, activism took off, starting with the formation of Gay Men’s Health Crisis (GMHC) in NYC.  The initial focus was political advocacy, community self-help, and fundraising. ACT UP started in March, 1987. ACT UP’s accomplishments in the following years were staggering and revolutionary but the community was often torn apart by infighting and disagreements about how to strike a balance between (1) between patient care, advocacy, and research; and (2) the “inside/outside” strategy – namely, traditional advocacy meetings with the government agencies and legislators versus more confrontational public demonstrations, etc. Through use of the inside/outside strategy, the AIDS community eventually won a seat at the table and significant changes in government policy – especially in the drug research protocol and approval process – and obtained huge allocations of money for research from Congress.
Initially, support/attention (financial or political) was very hard to come by outside the gay community. However, by 1987, with the prominence of Rock Hudson’s AIDS diagnosis and death, Hollywood and other celebrities began to rally for AIDS, raising $6 million that year.  Meanwhile, the gay community had to deal with ever increasing hostility:  homophobia and negative reaction to the activists’ tactics, blame for “innocent victims” like children and those who received transfusions acquiring HIV (although, of course all people with AIDS were innocent), and fear that HIV was casually communicable to the heterosexual public.  In the early years, the mainstream media either largely ignored the crisis or made things worse. The first TV coverage was in 1983, and AIDS appeared on a Newsweek cover that year. In 1985, the first TV show about AIDS with a sympathetic and realistic depiction was broadcast.

The Early Years: CDC, NIH, FDA and Congress


  • Initially CDC had Epidemic Intelligence Officers in NYC interviewing every newly diagnosed patient. However, in 1983 CDC cut back. The community offered to help gather data but CDC declined the offer.
  • CDC appeared focused on blood supply issues. In 1981, CDC realized a child had gotten HIV through blood transfusion. By 1982, blood banks were screening out blood from gay men, heroin users, Haitians, and hemophiliacs.
  • In 1982, the head of CDC came to NYC to meet with front-line doctors. He was sympathetic but nothing consequential resulted from the visit.
  • Reagan budget cuts in 1982 result in only $2 million for CDC’s AIDS efforts.

The National Cancer Institute (NCI) was the first NIH institute to get involved because one of its leading researchers, Dr. Robert Gallo, was doing groundbreaking work on retroviruses and saw a potential link with AIDS  – a very significant step as he was a world-caliber scientist.  However, Gallo immediately was in competition with Dr. Luc Montaigner in France. Montaigner is generally recognized as discovering HIV first but because Gallo wanted the credit (the Nobel Prize, especially), he claimed the two viruses he and Montaigner found were different when, in fact, they were the same.  Two years of subterfuge and confusion over this issue delayed sending clear signals to researchers about what to study.  In addition, the FDA stymied adoption of the French blood screening test, which was better, in favor of the test developed in the U.S.
Once it was clear there was only one virus, another NCI branch started studies to determine if AZT, a failed cancer drug, was effective against the AIDS virus. The NCI branch chief who started the work on AZT assembled a highly motivated SWAT team by telling them that studying AIDS offered a once-in-a-lifetime opportunity.  In 1985, NIH concluded that the National Institute of Allergy and Infectious Diseases (NIAID) was better equipped to study AIDS treatments. AZT studies remained at NCI but the thrust of NIH’s effort shifted to Dr. Anthony Fauci at NIAID who was responsible for the AIDS Clinical Trials Group (ACTG).
Then Rock Hudson died, and it was considered quite embarrassing that he had to go to France for treatment.  Reagan finally addressed AIDS at a press conference and said it was a “top priority.”  He asked for a 47% budget increase for NIH and then Congress added $70 million on top of that for a total of $190 million. But Fauci said that was not enough money. He convinced NIH to double the Administration’s budget request to $300 million in order to create a national system for coordinating, funding, directing, and evaluating research on promising treatments – risking that Congress would say to take the funding from programs for other diseases. In the end, Congress funded the total request.
Notwithstanding the influx of money, little progress was made after the initial discovery of AZT as a treatment.  There were several huge issues.  First, NIH remained focused on AZT for years, ignoring other possibilities. (Some patients were so frustrated that they even tried to compound and try a drug that Fauci would not test in trials).  In 1988 almost all trials were for AZT – exploration of the other 39 drugs under investigation enrolled only 25 PWAs.  While a billion dollars had been spent as of 1990, five NIH researchers monopolized the money, focusing almost totally on AZT, to the frustration of other NIH staff (as well at PWAs).  Second, NIH continued to ignore the opportunistic infections – what was actually killing people.  Fauci refused to endorse Bactrim for the treatment of pneumonia on the grounds that no research data existed to support its use, even though doctors were having remarkable success treating patients with it.  In response, doctors started their own community-based trials in anticipation of seeking FDA approval.  This was the first time this approach was used and it broke the stranglehold of AZT.  Third, the community identified a number of problems with the ACTG’s research protocols.
There was no simple procedure for allowing experimental medication to be used therapeutically. However, the AZT Phase II study was stopped early when it was so clear that those on placebos were dying at a much faster rate.  This resulted in the fastest approval in FDA history, thanks largely to collaboration with NCI.  But it also resulted in the highest priced drug ever – $10,000 a year – even though the government, not the drug company – Burroughs Wellcome – had conducted (i.e., paid for) much of the research and testing.
The FDA also spent almost as much of its budget in the earlier years promoting testing for HIV, which the community largely opposed, as it did on research.
The book devotes less attention to Congress. It appears that the first testimony from a PWA was in 1983.  In 1988, hearings were held to review the Administration’s purported $2 billion AIDS budget.    Hearing testimony disclosed that one-third of the total was for Medicaid, which would have happened regardless, and that the real budget for AIDS appeared to be only $585 million, much of it going to Burroughs Wellcome, the manufacturer of AZT.  But, most significantly, as described below, Congress adopted the AIDS community’s blueprint in 1992.  (The report on the MEAction website also mentions the Ryan White CARE Act, passed in 1990, which provided a huge amount of money for patient services in the following years.)
Activism takes off
Gay Men’s Health Crisis initially was a hard-core group of 12 volunteers, but it grew quickly and an executive director was soon hired.  In the first six months, GMHC started a hotline; created a network of buddies to help patients; set up therapy groups, legal clinics, and financial workshops; arranged community forums; investigated and exposed improper hospital care; and trained “crisis intervention counselors.”  Additionally, over 200 medical professionals joined New York Physicians for Human Rights.  Within a couple of years, one of the leading doctors was able to enlist a wealthy, respected, heterosexual interferon researcher, Dr. Mathilde Krim, to donate money and become engaged in research.  She gathered an informal group of researchers to collect blood and tissue samples and, in 1983, created AmFar (American Foundation for AIDS Research) with major luminaries on board.
In 1983, east and west coast advocates joined up for the first time.  They decided to use the term “people with AIDS (PWAs)” rather than “patients” and created the Denver Principles – establishing the rights and responsibilities of PWAs, most fundamentally, the right to speak on their own behalf, to be included in every aspect of their care, and to be consulted on all matters of science, medicine, and public health policy.
More confrontational tactics began – e.g., in 1986, the Lavender Hill Mob disrupted meetings at the CDC, holding a sit-in. There was significant infighting as activists disagreed over the balance between patient care and advocacy and whether to work inside or outside the system.  Activists started ACT UP (AIDS Coalition to Unleash Power) in March of 1987, which worked both inside and outside.  ACT UP’s goal was a comprehensive and coordinated national policy, overseen by a single independent agency to eliminate redundancies and oversights among CDC, NIH, and the FDA; increased funding for experimental drugs; an open and accessible register for patients wishing to enroll in trials; the permanent elimination of placebos in AIDS trials; and an end to discrimination against PWAs, especially within hospitals.  Protests became part of the ACT UP strategy – the first one on Wall Street focused on the FDA. A second national march in Washington, D.C. in 1987 attracted 200,000-750,000 people.  Nevertheless, there still was little support for AIDS work outside the gay community.  Also, personality clashes undermined the community’s efforts.  AIDS activists, for example, had to deal with the dominating personality of an early leader, Larry Kramer, who accomplished a great deal but alienated much of the community, wasting a lot of energy.
ACT UP realized that PWAs had to become very knowledgeable about both the underlying science and how the government works in order to engage meaningfully with researchers. This led ACT UP/NY to form the Treatment & Data Committee (T & D).  T & D soon discovered many problems with methods for patient recruitment; they were also stymied trying to find out what clinical trials were going on. In 1989, T & D decided to develop an AIDS Treatment Research Agenda since the government never had created one.  The Agenda included a focus on community-based research outside the NIH orbit.  A major recommendation was to have NIH create parallel tracks for drug studies – one for people who met the strict profile for the study and one for a broader range of patients who might also benefit from the drug.
In 1991, in reaction to the rising tension between inside/outside activism and the perception of T & D as too “elite,” T & D broke off from ACT UP and became the Treatment Action Group (TAG).
Increasing intersection of NIH, the FDA, and activists
In 1987, Fauci met with PWAs for the first time, forced to do so by the intervention of Rep. Henry Waxman’s office.  That started a dialogue that continued informally with a couple of individuals at a private house – an approach criticized by many but that proved to be fruitful in building relationships. Fauci also went to New York to meet with ACT UP.
In 1988, ACT UP used a “good/bad cop” routine with the FDA. They first met with the commissioner and staff to present grievances and reports. However, there was no resolution so ACT UP held a huge protest that received major media coverage.  ACT UP also wrote every FDA employee to explain the basis for the protest.
In 1989, ACT UP members went to the Montreal International AIDS Conference uninvited.  T & D presented its AIDS Treatment Research Agenda; some of the attendees acknowledged that the Agenda made valid and necessary points.  Based on this success, T & D thought it would be able to participate in future meetings with researchers. Fauci had acknowledged the benefit of inclusion.  However, the “open door” often slammed shut again depending upon who was in charge of the meeting, leading ACT UP to break into meetings they were excluded from.
In 1989, despite protests, the FDA refused to approve DHPG.  Activists got Fauci at NIH to convince the FDA to reverse course. The FDA also approved a drug for PCP (pneumonia) based, for the first time, on data from community researchers.
In 1990, ACT UP told Fauci they were planning the biggest protest since the one at the FDA unless Fauci met their demands.  In response, Fauci published a newsletter refuting ACT UP’s assertions and warning that researchers were being scared away.  ACT UP mailed a rebuttal to every NIH employee and the demonstration on the NIH campus went ahead.  Fauci gave in and many of the demands were met, including full integration of community members into government committees.  The same year, one of the leading activists, Peter Staley, delivered a peacemaking speech at the annual AIDS conference that went a long way to soothing relations with the government researchers and rallying their support.  Fauci also came around to endorse the parallel track to drug trials but then said that the decision was up to the FDA.  However, he then went ahead and set up a panel with NIH, the FDA, big Pharma, and ACT UP to discuss NIH trials and the parallel track.
In 1990, the PWA community started an initiative to challenge pharmaceutical companies to develop drugs for opportunistic infections.  Merck entered the AIDS drug field, offered to work closely with T & D, and fulfilled that commitment.
In 1991, TAG did an exhaustive analysis of the NIH AIDS budget – budget, staffing, reporting, etc. Fauci told his staff to cooperate with the effort.  The report showed bureaucratic ineptitude and hit Fauci hard.  To address the various issues, TAG submitted a 10-point plan for a radical restructuring of the government’s AIDS research effort but Fauci would not agree to make significant changes.  TAG successfully lobbied Rep. Waxman and Sen. Kennedy to introduce the TAG plan as part of NIH’s reauthorization.  The Clinton administration had just started and the new NIH/HHS heads decided that they would not oppose the reauthorization bill.  It passed in 1992, the first signed bill of the Clinton presidency.  TAG’s recommended choice, William Paul, was chosen the next year to take over a newly elevated Office of AIDS Research.  Paul ordered his staff to develop the first-ever comprehensive AIDS blueprint.
The research focus in the early/mid-90’s shifted to a protease inhibitor cocktail for treatment. Controversy broke out in the AIDS community about the timing and process for gaining drug approval, reflecting the desire to get any possible treatment approved as soon as possible versus concern that it might be approved prematurely before its efficacy was established (as arguably had happened with AZT).  TAG submitted a proposal for a process to be followed which the government accepted.  By early 1996, it became clear that the long-sought life-saving treatment had been found.

Lessons learned

NOTE:  While only some of the items below include ME-specific information, I believe all the “lessons” listed here are relevant to ME work.
Individual leadership makes a huge difference.  Anthony Fauci was personally responsible for convincing Congress to appropriate a huge increase in funding for AIDS research.  Later down the road, Fauci intervened to prod the FDA to change its drug-testing protocols which the agency was resisting.
Ambition and intellectual challenge matter.  These drew path breaking scientists to AIDS research such as Robert Gallo.  But, see the next “lesson.”
Progress can be delayed by scientific competition (e.g., pursuit of patents and awards).  The competition between Gallo and Montaigner stymied research for two years while they debated whether the viruses they were each studying were the same.
Money comes, money goes.  The year after Reagan boosted the Administration’s budget request,  his administration cut the budget substantially.
A big-picture, overarching government strategy is key.  CDC, NIH, and the FDA never had an overall AIDS strategy.  Bureaucracy and fiefdoms blocked progress.

  • None of the primary agencies involved, CDC, NIH, or the FDA, created a big-picture strategic plan.
  • Once Fauci became involved at NIAID, the other institutes became neglected “stepchildren.” Eighteen institutes were involved as of 1991, with Fauci receiving half of NIH’s total AIDS budget.
  • In 1990, NIH created a new AIDS division to coordinate work but it proved to be just another level of bureaucracy and competed with the other institutes for budget share.
  • It took Congress, prompted by activists, to get NIH to develop an overall strategy.

NIH drug research priorities may not correlate with the greatest needs.  NIH’s research tended to reflect the interests of individual fiefdoms and researchers rather than the greatest needs or the most promising avenues.
Expedited/non-traditional processes for drug approval are possible.  Practices like parallel track trials, for example, are equally relevant to ME.
The community can make its own plans of action and statement of principles, both as an assertion of power and to make up for the government’s failure to plan.

  • In 1983, activists developed the Denver principles about the rights and responsibilities of PWAs. (HTTP://data.unaids.org/pub/ExternalDocument/2007/gipa1983denverprinciples_en.pdf)
  • When ACT UP started in 1987, they were united in anger and committed to direct action to end the AIDS crisis; early on, they established specific goals.
  • In 1989, ACT UP created the AIDS Treatment Research Agenda. HTTP://joeclark.org/dossiers/actup/agenda/agenda-edited.pdf
  • In 1991, the Treatment Action Group produced a report analyzing the government’s failures and developed a 10-point action plan which Congress adopted.

Patients can become experts. Clearly, activists needed to rely on scientific advisers but a small group of neophytes successfully educated themselves about AIDS to the degree that they could have meaningful discussions with government researchers, win their respect, and even propose alternative ideas.
Small actions can make a big difference.  Some of the most attention-getting ACT UP protests were extremely small, like the five people who entered the stock exchange trading floor and handcuffed themselves together.  The protest on NIH’s campus was about 1500 people, but was extremely well- organized and participants were trained in non-violence.  ACT UP used affinity groups so that people could employ their own splashy tactics within a larger protest.  And the organization provided support for those arrested – including bail money.  Savvy cultivation of the media was also essential to the success of these actions.
Getting to know you. The attitudes of government officials changed over time.  Activists were viewed with aversion for a long time, with their “gayness” and aggressive tactics too much for many.  And, like ME patients, activists were told their behavior was actually discouraging scientists from working on HIV.  But as individual researchers/officials got to know individuals with AIDS and other activists, and also learned to respect their expertise and commitment, attitudes changed.  A leading FDA antagonist in particular came around and changed course.
The government needs to engage with the community.  Fauci is still at NIH but not actively involved with ME.  CDC and FDA staff who were not there 30 some years ago most likely are unaware of the AIDS history and that the ME community’s ideas for engagement are based on precedent and past successes.
Presidential commissions and government reports often are ignored.  President Reagan established an AIDS commission in 1987.  It was a disaster initially with horrible and unqualified members.  But the leader changed, the members rebelled, and the commission came up with an excellent report in 1988.  The next month, C. Everett Koop, the Surgeon General, mailed a brochure about AIDS to every U.S. household.  A National Academy of Sciences report also echoed the commission’s finding.  However, there was an immediate public backlash and no recommendations were acted upon.
Drug costs can be astronomical.  Burroughs Wellcome made AZT the most expensive drug ever, even though the government conducted and funded much of the research.  It took a combination of protests, including one by ACT UP on Wall Street, and Congressional pressure to reduce the cost somewhat and, at one point, obtain federal subsidies.  The ME community will likely face the same issue when drugs come on line; we already see these issues with Ampligen.
Community cohesiveness is critical.  As the ME community moves into a more activist phase, we undoubtedly will face some of the same conflicts/pressures/dissension about the proper balance between the inside/outside strategy.  While protests and sit-ins are less viable for us, we have started moving in that direction.  ACT UP managed to use both approaches to leverage pressure and achieve success – hopefully, we can do the same.  But it will take a lot of work to do that successfully while using our limited energy.  And personality clashes can easily undermine efforts.
Community physicians can start their own drug trials.  AIDS physicians frustrated by NIH inaction and delays started doing their own studies.
The biggest lifesaver for many years came from the community, not the government..  While the connection between sex and HIV was extraordinarily difficult for gay men to deal with – on both the personal and political level – the dissemination of a safe sex manual booklet by a few activists was remarkably effective at reducing new infections.
Additional resources:



3 thoughts on “What ME Activists Can Learn from the AIDS Crisis”

  1. Millions Missing Canada

    There’s a lot of truths and hidden nuggets in this article.
    We’ve referred to this piece several times on our FB page zeroing in on some of the key points under ‘Lessons Learned’. To get ready for May Awareness, we’re suggesting people read it several times.
    Thanks for writing and posting the article!

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