The Terrifying Early Days of AIDS Chronicled in YA Book, 'VIRAL' - Advocate.com

The first to die left behind little more than their names and brief stories of chaotic, terrifying deaths. Individual by individual, they went from being seemingly well to perplexingly ill in a matter of months. Stripped of energy, they succumbed to strange infections, and their youthful physiques melted away until they looked like aged skeletons covered in sagging skin.

No one could believe the men were dying.

Not the sick.

Not their friends.

Not their doctors.

By some counts, Rick Wellikoff was the fourth person in the United States to die because of AIDS, but no one understood in 1980 that that’s what had killed him. During the fall of 1979 this grade-school teacher in Brooklyn, New York, sought medical advice about the hardened lymph nodes and odd purple skin rash he’d developed. After some testing, doctors diagnosed his rash as Kaposi’s sarcoma, but that was odd because this type of cancer, otherwise known as KS, usually occurred in aging men of Mediterranean ancestry, not someone in his thirties like Wellikoff. As cancers went, doctors viewed KS as relatively harmless; it progressed so slowly that few people actually died of it.

But not this time. Wellikoff’s KS spread with surprising speed. Continually exhausted, he quit his job, yet still he got sicker. Before the end of the next year, he didn’t just have KS. He’d developed an unusual lung infection, too. The illnesses overran his body, and he died on Christmas Eve 1980, at the age of thirty-seven. A few months later grieving friends scattered his ashes into the Atlantic Ocean as its waves rolled onto the sands of his beloved Fire Island.

The month after Wellikoff’s death, a friend and former Fire Island housemate of his died, too. Nick Rock had worked on cruise ships and been a bartender before he’d become worn down and lethargic. He likewise had developed KS. He experienced persistent diarrhea and couldn’t maintain his weight. After he suffered a seizure in the fall of 1980, his lover literally carried his diminished partner to a New York City hospital in search of help.

But no matter what physicians tried, instead of getting better, Rock got worse. Doctors said that he had multiple kinds of infections raging throughout his body. In his lungs. In his brain. In his organs. The names were a scientific blur. Toxoplasmosis. Cytomegalovirus, otherwise known as CMV. And some unidentified infection in his lungs. By the end of his short life, white foam was emanating from his mouth, his ears, and his nose. After a series of heart attacks, he died on January 15, 1981.

George Kenneth Horne Jr. hadn’t known Rock or Wellikoff. He’d grown up in Oregon and in the mid-1960s had moved to San Francisco at age twenty-one to study ballet. Eventually he’d set aside his ambitions of becoming a professional dancer and taken an office job. He’d also discovered the city’s vibrant gay social scene. By the fall of 1980, he’d become ill with the first reported case in San Francisco of what would eventually be called HIV/AIDS. 

As the months wore on, his lethargy and skin rash were compounded by constant fevers and debilitating headaches. Doctors had names for his afflictions—KS, CMV, and cryptococcal meningitis—but the usual treatments didn’t work. Despite all manner of medical interventions, he just got worse. A few other people began turning up similarly ill and faced equally rapid and frightening deaths. They left behind grieving partners, mystified doctors, and family members who were often astonished to discover a secret the men had not been prepared to reveal: that they were gay.

They were gay.

That was part of what was so perplexing about the earliest cases. Everyone who came down with the inexplicable pattern of illness was gay. “Unusual” was how medical professionals characterized the peculiar coincidence of five previously healthy gay men in Los Angeles coming down with a rare form of pneumonia known as PCP. This assessment accompanied their observations in a brief article published on June 5, 1981, in the newsletter of the US Centers for Disease Control, a publication known as the MMWR.

Unusual.

The next month a group of doctors in New York and California described the cases of twenty-six gay men who’d coincidentally developed KS, including the former ballet student Ken Horne. Many had since died. Some were likewise afflicted with PCP. This alert triggered reports from other physicians who had encountered similarly perplexing presentations of illness. Seventy of them. All gay. Many progressing with seeming inevitability toward death. Horne, by the final weeks of his life, had been reduced to 122 pounds, lost the sight in one eye, and begun exhibiting signs of dementia. He died on November 30, 1981.

***

Not everyone who became ill died immediately. Some people stabilized and returned home, but those who got better did not get well. There was still something wrong with them that doctors didn’t understand or know how to treat. It would take decades to make sense of it all. Meanwhile the long-termers survived, seemingly, thanks to healthful living, optimism, and sheer will. “The sure sign of someone who’s going to kick the bucket early is someone who turns inward, keeps the fear to themselves,” observed Dan Turner, who became ill in San Francisco in early 1982. He would live for another eight years.

But Turner and the other long-termers were the exception. In most cases, despite great medical heroics and expense, healthcare professionals were unable to save their patients’ lives—or even understand why they had died. That wasn’t supposed to happen in the closing decades of the twentieth century. Doctors had figured out how to transplant organs, end polio, and cure just about everything except cancer. But not this. This situation made no sense.

Analysts from the Centers for Disease Control, known as the CDC, took the lead in trying to find out what could be going on. Recently the center’s staffers had solved two high-profile medical mysteries—the 1976 outbreak at a convention in Philadelphia of what became known as Legionnaires’ disease and the toxic shock scare of 1980 among menstruating women. The mysteries had been solved by CDC epidemiologists, scientists who specialize in the study and tracking of epidemics. In both cases researchers discovered that already known and treatable bacteria were spreading through unanticipated mechanisms. They identified an air-conditioning system as the culprit in the first occurrence and a new ultra-absorbent brand of tampons in the second. The solutions were simple. Clean the air filtration system. Discontinue using the tampons. Take antibiotics to cure the infections.

The relatively easy containment of these outbreaks, accompanied by ongoing advances in modern medicine, had created a growing sense of confidence, in the medical profession and beyond, that people could control communicable diseases by employing three trusted lines of defense. The practice of good hygiene. The vigilant use of immunity-producing vaccines. And an arsenal of increasingly potent antibiotics.

It seemed as easy as one, two, three.

But, in 1981, epidemiologists quickly realized they were facing a tougher problem. An unusual problem. Even when they began to piece together the patterns of the outbreak—that it affected gay men, that it appeared to be transmitted through sexual intercourse, that it looked as if it remained dormant for some time before striking—they couldn’t identify the cause of the malaise. It was as if some new infectious agent was afoot. And it was like nothing they’d ever encountered before.

Later on epidemiologists would realize that a similar pattern of infection was taking hold beyond the gay community. But those cases were too rare or too hidden within marginalized groups for medical professionals to immediately recognize the connections. In consequence, when physicians followed the medical custom of naming the new illness based on its point of origin, they linked it to one community: gay men. GRID: gay-related immune deficiency, many called it. Or sometimes gay compromise syndrome. Others began referring to it informally as gay cancer. Or, even more casually, as Saint’s disease, after New York’s Saint disco, where so many of the afflicted had once danced.

Even before it became known as GRID, reports of the new illness began to spread. “Rare Cancer Seen in 41 Homosexuals,” announced a New York Times story that ran during the Fourth of July holiday in 1981. The article particularly caught the attention of gay men, including those visiting Fire Island. For many, it was the first marker in what would become an era dominated by a growing health crisis. According to journalist and AIDS historian David France, vacationers “spent the long weekend examining one another’s flesh,” in search of the bruise-like blemishes it described.

They found them by the dozens.

That same summer, across the country in San Francisco, a registered nurse named Bobbi Campbell became the city’s sixteenth case of KS. Soon after, he began raising an alarm among fellow citizens as a sort of modern-day Paul Revere. But this time it was the gay community that was under attack, and Campbell didn’t need a horse. All he needed was a Polaroid camera, writing implements, and some paper.

KS Poster Boy, he called himself.

Campbell started taking Polaroid photographs of his KS lesions and including them in homemade posters that he displayed in the Castro district, the city’s gay population hub. He also began writing about his illness and his outreach in the San Francisco Sentinel, the local gay newspaper. He called his column the Gay Cancer Journal. Campbell used it to share his own experiences and to report whatever he could learn about the outbreak of the strange cancerous rash.

“I’m writing because I have a determination to live,” Campbell affirmed to the paper’s readers. “You do too—don’t you?” Sometimes he wore a T-shirt calling attention to himself as the Poster Boy so that people would know they could turn to him with questions. He couldn’t always offer answers, but he could warn gay men to take charge of their physical health. The marks might look like bruises, but they weren’t, Campbell explained. They don’t fade away; they spread. They were an ominous sign of major medical trouble, he cautioned, and people should take them seriously. Dead seriously.

Because if you had them you might be about to get deadly sick. 

Excerpted from VIRAL: The Fight Against AIDS in America by Ann Bausum, out now. Reprinted courtesy of Viking Books for Young Readers.

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