By 1987, the AIDS epidemic had reached grim proportions. The disease had killed nearly 60,000 people worldwide and more than 40,000 were HIV-positive in the United States alone. The majority of those ravaged by the disease were homosexuals. Despite rising cases and deaths, President Ronald Reagan did not utter the word AIDS in public until September 1985.
To many, it seemed the US government had deliberately ignored what had become a global health emergency.
“In the history of the AIDS epidemic, President Reagan’s legacy is one of silence,” said AIDS activist Michael Cover in a June 8, 2004 SFGATE op-ed. of thousands of people who died alone and unrecognized, stigmatized by our government under his administration.”
AIDS was considered a homosexual disease and it seemed that the community was alone in fighting it. They fought, and the work of ACT UP and many activists paved the way for breakthroughs in patient rights.
ACT UP aims to improve health care
American playwright and activist Larry Kramer poses for a portrait outside the open door of his apartment in April 1993 in New York City.
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In March 1987, AIDS activist Larry Kramer and others formed the AIDS Coalition to Unleash Power (ACT UP). The group was made up of people without rights, facing an incurable disease, who had been abandoned by their families, their government and their society, notes author and activist Sarah Schulman in Let the Record Show: A Political History of act up New York, 1987-1993. It was loosely organized as a confederation of affinity groups – each with its own set of talents – and this expertise contributed to its enormous impact.
ACT UP is often remembered for its most dramatic moments, from packing North Carolina Senator Jesse Helms’ house in a giant yellow condom to disrupting mass at St. the dumping of the ashes of AIDS victims on the White House lawn. While these are powerful visuals, the organization’s main goal was to improve patient-centered care.
ACT UP was one of the first groups to offer to design care solutions specifically adapted to the population treated. They brought high-quality care to the streets, cured the underserved with AIDS, found refuge for the homeless, and protected intravenous drug users through needle exchanges.
The group also challenged the health industry. Decades before the Affordable Care Act, they fought for changes in state insurance laws and called for exclusionary policies against gay men. ACT UP has played a leadership role in engaging government agencies and pharmaceutical companies to expedite testing, reduce drug costs, and include people living with HIV/AIDS in the care design process.
“We need to break the cult of experts in all areas of this society,” ACT UP’s Mark Harrington said in the 2012 documentary, “United in Anger: A History of ACT UP.” “People with AIDS are the experts on this disease.”
The notion of patient-centered care was not new to health care in the United States, but the AIDS crisis injected urgency behind this principle.
“Before AIDS and before ACT UP, all experimental medical decisions were made by physicians,” said Dr. Anthony S. Fauci, longtime director of the National Institute of Allergy and Infectious Diseases. New Yorker magazine in 2002. “Larry Kramer, by providing consumer input to the FDA, put us on the defensive against our credits. ACT UP puts medical treatment in the hands of patients. And that’s how it should be.
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AIDS activists fight for access to experimental drugs
ACT UP members argued that patients deserved access to experimental drugs, even if they weren’t yet FDA-approved, and that during a national crisis, access to new therapies and to innovative care should be everyone’s right.
“I would rather take my chances with the side effects of an experimental drug,” said AIDS activist Vito Russo. Ottawa Herald in October 1988. “The side effect of AIDS is death.”
ACT UP’s Processing and Data Committee, also known as the “Science Club,” has studied the workings of the Food and Drug Administration inside and out, Schulman says. Eventually, they came to understand FDA processes, policies, and systems. They analyzed experimental drugs, clinical trials and emerging treatments long before they were approved.
In 1988, ACT UP published an FDA action manual, organized a series of teachings, and distributed news like Hollywood releases. By giving the media advanced information, journalists had information long before their stories were broadcast or printed, and coverage tended to be more favorable.
On October 11, 1988, approximately 1,500 ACT UP protesters disrupted FDA headquarters in Rockville, Maryland. Crowds blocked access to gates, walkways and roads; launched smoke bombs; hijacked office workers; and chanted protest songs, including “Hey, hey, FDA, how many people did you kill today?” They issued a series of demands, including shortening the drug approval process, offering free access to drugs after phase 1 trials, halting double-blind placebo trials – including people from all walks of life and in all stages of HIV infection in clinical trials – and making Medicaid and private insurance responsible for paying for experimental drugs.
A year later, the “parallel track,” which allowed early release of drugs and treatments to terminally ill patients who had exhausted all other options, was finally accepted by both the FDA and the National Institutes of Health. . Soon a second antiretroviral drug became available. Many patients felt hope for the first time since their diagnosis.
Once only seen on angry picket signs, “Drugs into Bodies” has become a public health practice. ACT UP had forced a change in the way clinical trials were run in the United States. The pressure of the group was then concentrated and accentuated on the pharmaceutical companies themselves.
The (expensive) beginnings of AZT
In the early 1990s, there was only one drug approved (azidothymidine/AZT), and its 25-month approval process was considered incredibly fast at the time. Many patients could not tolerate AZT or the side effects it caused, but no other viable options existed.
Pharmaceutical company Burroughs Wellcome originally priced AZT at $10,000 per year (adjusted for inflation: $25,730). Facing a congressional investigation into price gouging, the company lowered the price to $8,000 a year, but it remained the most expensive drug ever sold. In two years, shares of Burroughs Wellcome have soared 40%. ACT UP and 15 other bands met Burroughs, who did not budge. In response, ACT UP called for a national boycott of all Burroughs products, which they labeled with “AIDS profiteering” stickers in stores.
By September 14, 1989, more Americans had died of AIDS-related causes than during the Vietnam War. America had brought back its 100,000e AIDS cases and predicts another 100,000 within a year. Seven ACT UP members chained themselves to the VIP balcony of the New York Stock Exchange, calling on the company to take advantage of the crisis. Weeks after the protest, Burroughs Wellcome reduced the price of AZT to $6,400 a year, saying they had planned to do so from the start.
Accelerate research
ACT UP challenged all aspects of care design and delivery. Many NIH trials of AIDS drugs required patients to stop all other drugs, including life-sustaining drugs. As a result, many trials failed to reach approval, resulting in a limited selection and supply of proven AIDS drugs. ACT UP members demanded change.
“Critical studies of drugs for opportunistic infections that were proposed two or three years ago have yet to begin due to opposition from key members of the executive committee, while tens of thousands of people with of AIDS have died of these same infections,” explained Richard Lynn of ACT. UP in 1990.
The Science Club has focused its efforts on accelerating the pace of research. They fought lawsuits that blocked the production of lower-cost generic drugs, called for congressional hearings on drug pricing, and protested the pharmaceutical industry’s influence on elected officials. By 1996, thanks to patient-centered care initiatives, combinations of new antiretroviral drugs had changed the prognosis of people living with HIV, allowing people with the virus to live long and relatively healthy lives.
According to Allan M. Brandt, professor of the history of medicine at Harvard University, the changes that AIDS activists fought for have left a lasting impact on approaches to health care. “When the history of the HIV epidemic is finally written,” Brandt wrote in the June 6, 2013, issue of New England Journal of Medicine“it will be important to recognize that without this outbreak there would be no global health movement as we know it today.”
