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From the Castro bathhouses to AZT and the denial of AIDS in South Africa, this sweeping look at AIDS covers the epidemic from all angles and across the world. Engel seamlessly weaves together science, politics, and culture, writing with an even hand—noting the excesses of the more radical edges of the ACT UP movement as well as the conservative religious leaders who thought AIDS victims deserved what they got.
The story of AIDS is one of the most compelling human dramas of our time, both in its profound tragedy and in the extraordinary scientific efforts impelled on its behalf. For gay Americans, it has been the story of the past generation, redefining the community and the community's sexuality. For the Third World, AIDS has created endless devastation, toppling economies, social structures, and whole villages and regions. And the worst may yet be to come: AIDS is expanding quickly into India, Russia, China, and elsewhere, while still raging in sub-Saharan Africa.
A distinguished medical historian, Engel lets his characters speak for themselves. Whether gay activists, government officials, public health professionals, scientists, or frightened parents of schoolchildren, they responded as best they could to tragic happenstance that emerged seemingly from nowhere. There is much drama here, and human weakness and heroism too. Writing with vivid immediacy, Engel allows us to relive the short but tumultuous history of a modern scourge.
In June of 1981, the United States Centers for Disease Control (CDC) reported that five young men in Los Angeles had been treated in recent months for Pneumocystis carinii (PCP), a rare form of pneumonia. Two had later died. All were also infected with, or had been infected with, cytomegalovirus (CMV).1 All were active homosexuals. All had had multiple sexual partners over the past several years. Several had reported using one of two sexual enhancement drugs: LSD or amyl nitrite.2
Two months later, the CDC reported that over 100 gay men had been diagnosed with either PCP or a rare cancer, Kaposi's sarcoma (KS), since January of 1980. Nearly half had died. Some men had been diagnosed with both maladies, others with only one. Typically, the CDC reported, KS afflicted only 1 American in 1.5 million, and the victims were predominantly elderly.3
The cause was unclear. Harold Jaffe, a member of the CDC group investigating the malady, queried whether this new syndrome affected only gay men, or if gay men were simply being disproportionately diagnosed. The CDC began to track the syndrome thatfall, using requests for pentamidine isothionate, a drug used to treat PCP, as a means of locating the cases. Many of the diagnosed men had contracted other sexually transmitted diseases, or had been diagnosed as well with various sorts of mucosal infections and digestive parasites. The one significant factor in the cases appeared to be the number of sexual partners with which the infected men had liaised over the previous year: over 60 for the infected men versus 25 for a control group.4
Most troubling was the rate at which the peculiar syndrome appeared to be spreading. Case frequency seemed to grow exponentially. "If I had written this a month ago, I would have used the figure '40,' " wrote gay playwright and activist Larry Kramer that September. "If I had written this last week, I would have needed '80.' Today I must tell you that 120 gay men in the United States--most of them here in New York--are suffering from an often lethal form of cancer . . . more than 30 have died."5 By November 1982, almost 600 cases of the strange syndrome had been reported to the CDC, with an overall mortality rate of 41 percent, and mortality rate for those diagnosed over a year previous of over 60 percent. The epidemic was doubling every six months.6
By that time the syndrome had a name, or rather two names--AID for acquired immunodeficiency disease, and GRID for gay-related immunodeficiency. It had been reported in nearly half the states in the United States and in several countries abroad. While the fatal part of the syndrome tended toward the two diseases initially diagnosed--KS or PCP--all of the victims were fantastically vulnerable to infection generally. GRID patients had been diagnosed with cytomegalovirus, fungal toxoplasmosis, cryptosporidiosis, eye damage, lupus, anemia, and various lymphomas and cancers. The disease did not appear to spread through airborne pathogens, and it was capable of infecting nonhomosexuals as well. In November 1982, the CDC grouped GRID victims into four major risk groups: homosexual or bisexual males (75 percent); intravenous drug users (13 percent); hemophiliacs (.3 percent); and, inexplicably, nongay or non-intravenous drug-using Haitians (6 percent). An additional 5 percent of victims fell into no known risk group.7 GRID prevalence was 10 times higher in New York City and San Francisco than in the rest of the country.
Victims took a long time to die. The CDC physician assigned to coordinate the task force on Kaposi's reported that costs were reaching $64,000 per patient, and that the first 300 cases produced hospital billings of $18 million.8 During that time, their bodies weakened and wasted, as their disintegrating immune systems allowed greater and greater numbers of pathogens to invade. "I found myself bedridden with a cold that wouldn't go away, viral bronchitis, fever, diarrhea, loss of appetite, and extreme fatigue," wrote one early GRID victim. "Then I developed chronic ear infections, shingles on the backs of both legs, and a per-sis-tent sore throat."9 Described another: "Low-grade fevers, generalized lymphadenopathy, and thrush. Weight loss--massive weight loss: fifty pounds! Pain, unexplained pain in my limbs, headaches, nausea, and unexplained diarrhea for seven months."10 A New York physician described the early cases he witnessed: "It's the worst way I've ever seen anyone go. I've seen young people die of cancer. But this is total body rot. It's merciless."11 And describing an AIDS-afflicted patient who had picked up a common parasite, the physician proceeded: "The deterioration progressed relentlessly until he couldn't carry on his job. While he was in the hospital he suffered a generalized seizure. Then another so prolonged he needed anesthesia to prevent his limbs from jerking all over. The body was still because of the drugs, but the brain never stopped seizing."12
The new disease left epidemiologists, infectious-disease specialists, and oncologists bewildered. What was causing this strange new illness, and how was it spreading? Researchers pondered several explanations in the early days of the epidemic, but none seemed wholly satisfactory. Gay men who contracted the disease reported using nitrite drugs at rates disproportionate to the rest of the population, but this didn't explain why nonnitrite users were also getting sick. Another theory rested on the startling number of sexual partners each of the afflicted men had coupled with--nearly 1,100 over a lifetime--and the great many infections that the men had picked up along the way, including syphilis, gonorrhea, and "gay bowel syndrome," the general term for the array of bacterial, viral, and parasitic infections that gay men tended to pick up through anal sex. This theory held that the men's bodies were suffering from "immune overload," or "sperm overload," or some other such rejection of the flood of foreign material to which they were exposed.13 Another theory postulated that the oft seen cytomegalovirus was itself the causative agent. Still another suggested water contamination.14 Others sought a multifactor explanation, combining in some form drugs, chemicals, viruses, and general wear and tear of the immune system.15
Excerpted from The Epidemic by Jonathan Engel Copyright © 2006 by Jonathan Engel. Excerpted by permission.
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Posted October 31, 2012
Posted August 18, 2010
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