What Is the AIDS Crisis?
October 11, 1987—-Washington, DC
As the sun rose over the nation’s capital, people gathered along the National Mall, the lawn stretching from the Lincoln Memorial to the US Capitol building. They were there to honor the friends and loved ones they had lost to an illness called AIDS. Since 1980, the disease had taken the lives of more than twenty thousand Americans. In 1987 alone, 16,488 more would die.
In memory of the dead, an enormous quilt had been made. Each of the quilt’s 1,920 panels measured three feet across and six feet tall—-about the size of a grave. Every piece of fabric—-sewn, printed, embroidered, or hand--painted—-was dedicated to a person who had died. A child. A friend. A parent.
As teams of volunteers unfurled the quilt, the names of the dead were read aloud. Some people remained silent. Some cried. Many hugged one another. News crews broadcast the event to millions of Americans watching on TV.
Actor Whoopi Goldberg read out some of the names. “I’ve lost sixty of my friends to AIDS,” she told the New York Times. “I’m here for me, my friends, my daughter, and all of those who are suffering.”
This was the first public appearance of the AIDS Memorial Quilt. At this time, it was larger than a football field. But it would keep growing as more died.
Most of the victims of the AIDS crisis were gay men. But seven years into the epidemic, the disease was spreading to more Americans than ever before. (Epidemic is when an infectious disease becomes widespread within a community. Pandemic is an epidemic that has spread worldwide.)
“Too much of the sorrow is confined to one group of Americans,” one gay man said, “and I think the rest of America needs to be aware of what’s going on here.”
After the display of the AIDS Memorial Quilt, a march began. As many as three hundred thousand took part.
There would be more marches on Washington. Darker days and much more death lay ahead.
The story of the AIDS crisis is one of fear. Fear of a strange new disease and a terrifying, painful death.
It is also a story of hope and people banding together to take care of—-and fight for—-one another. To make the US government face the crisis and finally do something about it.
And it is a story of science and discovery—-of fighting to outsmart an invisible virus. Chapter 1: The First to Fall
In the fall of 1979, a fifth--grade teacher in New York City named Rick Wellikoff noticed strange bumps behind his ear. He visited a doctor and found out he had Kaposi’s sarcoma, a rare skin cancer. “KS” usually affected men in their fifties and sixties, not someone in their mid-thirties, like Rick.
Throughout the next year, 1980, Rick felt exhausted. He had to quit his job. That summer, instead of a vacation, he stayed home to rest.
Nick Rock was a handsome young man who worked on a cruise ship. That same summer, he joined friends at their beach house on Fire Island, near New York City. But Nick wasn’t his usual fun--loving self.
Like Rick, Nick was always tired. And he was sick to his stomach and losing a lot of weight. He, too, could no longer work. He had visited doctor after doctor, but his health only worsened. Nick’s boyfriend, Enno Poersch, hoped some fresh ocean air would do Nick good.
But by September, back in New York City, Nick was so weak, he could barely move. Sitting up in bed and getting dressed could take an hour. His body began to change. His back and shoulders hunched over.
On Halloween night, Nick fell unconscious. Enno rushed him to the hospital, where X--rays revealed three lesions on Nick’s brain. (Lesions are areas of damaged tissue that are caused by injury or disease.) Doctors thought he had a disease commonly found in cats. Thanks to the body’s immune system, most people exposed to this disease recovered quickly . . . but not Nick.
Meanwhile, in San Francisco, California, Ken Horne—-a thirty-seven-year-old gay man and former ballet dancer—-had developed purplish--blue spots across his body. “My life is falling apart,” he told his doctor. Ken had also felt really tired for the past two years.
In New York, Rick Wellikoff’s health took a turn for the worse. His lungs were filling with fluid. In the hospital, a tube was inserted into Rick’s chest to help him breathe. But Rick decided he wanted to leave the hospital. To live like this was hardly living at all. His doctors removed the tube, and Rick returned home with his boyfriend. By morning, Rick had died. It was December 24, 1980.
As for Nick Rock, for a short while, his health seemed to be improving. But he had a heart attack and was rushed to the hospital. Nick’s body was riddled with infections.
Sometimes Nick would open his eyes, but he couldn’t speak. His sister and boyfriend, Enno, were heartbroken. They decided to turn off Nick’s breathing machine. Moments later, Nick was gone.
Back in San Francisco, Ken Horne’s doctors could find no clear answers for why he kept getting sicker. By November 1981, Ken had lost sight in one eye, and his once--strong dancer’s body weighed just 122 pounds. He died on November 30.
On June 5, 1981, the Centers for Disease Control published an important report. (The CDC is the government agency in charge of protecting Americans from public--health threats.) The CDC’s report was about five young men in Los Angeles who had been treated for a rare form of pneumonia (say: new--MOE--nee--uh), an infection of the lungs. The patients also suffered from other infections.
By the time the report was published, all five men were dead.
The report noted a strange coincidence: All the patients were gay.
These men in Los Angeles—-along with Rick Wellikoff, Nick Rock, and Ken Horne—-were among the first known Americans to die of AIDS. More deaths quickly followed. There were 466 in 1982. Ten years later, in 1992, there were more than forty thousand.
In the frightening early days of this health crisis, the disease didn’t even have a name. No one understood what was killing these young gay men. Chapter 2: “Gay Cancer”
The CDC study caught the attention of Dr. Alvin Friedman--Kien in New York City. He phoned the CDC to report that he and some other doctors had been treating a group of patients for KS, the rare skin cancer. Just like the patients from the CDC report, these KS patients were all gay men.
More calls came in to the CDC from doctors around the country about patients—-all gay—-who were sick and dying from KS and PCP (the rare pneumonia). Whatever was causing these gay men to fall ill was clearly a widespread problem. The CDC formed a group to study and learn more.
In July 1981, the Bay Area Reporter, a gay and lesbian community paper in San Francisco, ran a short article about “‘Gay Men’s’ Pneumonia.” It encouraged gay men experiencing shortness of breath to visit their doctors.
Days later, the New York Times ran an article about KS under the headline “Rare Cancer Seen in 41 Homosexuals.” (Homosexual is a word used to describe a gay person, but the term is considered aggressive and offensive today.) Many of the patients went to gay clubs and used certain drugs. The doctors wondered if the drugs could be responsible for the disease. The article suggested it was unlikely the disease was spread from person to person. One doctor pointed out that “no cases have been reported . . . outside the homosexual community or in women.”
This would not be the case for long.
People began referring to the disease that had no name as “gay cancer.” Scientists even briefly called it gay--related immune deficiency (GRID). The fact that the disease was described this way only resulted in harmful misunderstandings about AIDS for years to come.
Yes, in those early days of the crisis, it was gay men who were most affected. And since few others besides doctors and nurses were helping them, it was the queer community that rose up to fight the disease and care for the sick.
Copyright © 2022 by Penguin Random House LLC.. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.