This essay is the last in a three-week series entitled On a Switch, inspired by the words of former US ambassador to the UN, Samantha Power:
‘No matter how small our actions may be, we have to model the principles that we believe in.’
The essays are stories of three dark moments in America’s history in which a few ordinary citizens ‘led principled, effective resistance’ against the dark, and flipped a switch.
Part III – No Heroes are Coming.
The 1980s AIDS Crisis
‘Darling, you see, no heroes are coming for you. Grab your sword, and don your own armor.’
- Emily Palermo
AIDS did not begin in the 1980s or in the United States. This chapter of its story does though, with a report by the Center for Disease Control (CDC) in 1981.
It described a strange phenomenon: Twenty-six gay men in New York City and the state of California had contracted the same, unusual form of pneumonia. That same day, the 3rd of July, the New York Times reported forty-one cases of a specific type of cancer; all affected were also gay.
All of them also had AIDS: Acute Immunodeficiency Syndrome, a disease that by then had spread far beyond just sixty-seven individuals. Estimates of those infected range between 100,000 and 300,000 people, on all five continents.
Few in 1981 knew what HIV even stood for - Human Immunodeficiency Virus – let alone what it was. HIV is a virus that attacks the human immune system. With time, it destroys so many cells that the body cannot fight infections. When that happens, HIV becomes AIDS, and with the immune system suppressed, any opportunistic infection, or cancer, or even the flu can be lethal.
HIV is transmitted through body fluids like blood, semen, vaginal secretions, and breast milk. In the US, it was immediately linked to drugs and unprotected sex. In the 1980s, because HIV/AIDS only seemed to infect homosexual communities, the media called it the ‘Gay Plague.’ The public followed, and correspondingly turned up its nose and condemnation.
By 1986, 11,932 deaths had been reported across the country. And the government had said nothing.
Ed Koch, the mayor of New York City, at the center of the epidemic, took two years to publicly acknowledge the existence of the disease. President Ronald Reagan took six, and even when either did, nothing followed. The death toll rose to 20,000.1.5 million more were infected.
When asked about HIV research, former president George Bush senior replied with the observation that he did not approve of ‘that lifestyle.’ President Reagan’s White House press secretary was less tactful when he said that the reporter pressing the issue had to be homosexual himself. And California’s Prevent AIDS Now Initiative Committee (PANIC), went beyond statements to sponsor a campaign for mandatory testing and mass quarantine of individuals found infected.
The casualties multiplied with the excuses: no budget, no political will, no access to treatment under testing, no health insurance or government support to cover treatment anyway. Polite society did not care; polite society was not gay. Those in it who were, were either ashamed, too weak to protest, or dead.
Until one frigid December morning, when New York City awoke to black posters with pink triangles plastered all over Manhattan.
The Nazis had used inverted pink triangles to mark homosexuals in concentration camps during World War II. But these triangles were upright. Beneath them, two words, in white block letters:
SILENCE = DEATH
It got polite society’s attention. Onto the government.
In March of 1987, playwright and activist Larry Kramer was invited to speak at a meeting in the New York Lesbian and Gay Community Services Center. He asked two-thirds of the audience to stand up, and when they did, declared that within the next five years, the people standing would probably be dead.
He challenged them to ‘organize, mobilize, and demand an effective AIDS policy response’ from their government. No heroes were coming. They had to don their own armour.
The following week, 300 people attended the first ACT UP meeting: the AIDS Coalition To Unleash Power. The week after that: 800. The group spread to other cities, where chapters campaigned nonviolently to raise awareness of the disease and improve the quality of medical and social services for those affected by it.
Faster approval and release of experimental AIDS drugs
Affordable drug prices for all those affected regardless of their class backgrounds
Health insurance and Medicaid coverage for experimental drug therapies
Alternatives to the highly toxic drug dominating the market.
A federal needle-exchange program
A federally controlled and funded program of condom distribution
A serious sex education and awareness program in schools
Their tactics: Non-violent protests, targeted demands, poster campaigns.
Most importantly, ACT UP established the Treatment and Data Committee: citizens who took it upon themselves to study and understand the science. They read textbooks on immunology, virology, cellular biology, and medical statistics so they could engage scientists in meaningful dialogue.
ACT UP’s advocacy eventually helped lower the price of drugs, change the FDA’s approval process, incorporate more patients into drug trials, diminish social stigma, and educate. Its engagement of the scientific community led to a breakthrough that, in 1996, catalyzed the development of drugs that could prolong lifespans.
Much has changed since that CDC report was released in the early 1980s. Much has not; today, 36.9 million people live with HIV. Since the start of the pandemic, up to 50 million people have died. That number increases by 2 million each year; just those who cannot pay for the drugs.
ACT UP did not eradicate AIDS, but it did bring a loud end to government and societal indifference. It flipped a switch, and to those who are alive today because of it, the light must seem resplendent.
 Azidothymidine (AZT)