Gottlieb ordered a bronchoscopy, as well as scrapings from the mouth sores, and had the sputum samples sent to the lab. The results astonished him: Pneumocystis carinii pneumonia, or PCP, filled the young man’s lungs. Caused by a parasitic protozoa, PCP was almost exclusively seen among newborn infants in intensive care, terminally ill cancer victims, and/or elderly individuals living in nursing homes and other group settings. While nearly everyone had some Pneumocystis in his or her body, the organism was usually considered harmless because it was effectively kept in check by the immune system. What typical patients with PCP shared were exceptionally weak immune systems and concentrated exposure to other immune-deficient humans.
One thing was certain: it was rare, to the point of inconceivable, that this otherwise healthy man would have PCP.
“This is a red flag for something,†Gottlieb told colleagues at UCLA. “This patient has no prior history of illness that should predispose him to Pneumocystis. It makes no sense.â€
The lab also reported that the white sores in the patient’s mouth were caused by Candida albicans fungi, which could be sexually transmitted. And another sexually transmissible, usually harmless microbe was found in the patient’s blood: cytomegalovirus.
Gottlieb took a careful history but learned little to explain his illness. True, the patient was a homosexual, and had had a few sexually transmitted diseases, but Pneumocystis wasn’t spread sexually, and none of the three infectious agents ravaging him usually caused illness in healthy young adults. It just didn’t make sense.
When Gottlieb ran blood tests the mystery deepened: the young man’s antibody-producing capacity seemed intact, but his T-cell response was virtually nil. T, or thymus-derived, cells performed a range of crucial functions in response to infection, including identifying an invader and signaling the rest of the immune system to take defensive action against the microbe. Without an intact T-cell system no higher animal—be it mouse, dog, or Homo sapiens—could hope to halt the advance of even something as normally benign as Pneumocystis.
By March the patient had to be hospitalized. Gottlieb and his UCLA staff tried a variety of experimental and long-shot drugs on him, including the antiparasitic drugs trimethoprim-sulfamethoxazole and pentamidine and the antiviral acyclovir. The patient died on May 3, 1981: the autopsy found Pneumocystis throughout his lungs.
The terse litany of a medical report could never capture the drama of this patient’s illness and death. For Gottlieb it had been shattering to witness, with uncharacteristic impotence, the patient’s entire body fail, one organ after another, seemingly overwhelmed by waves of infection.
Even if this had been Gottlieb’s only such case he would have felt compelled to chronicle the mystery for scientific scrutiny in some obscure medical journal.
But it wasn’t the only case.
A Los Angeles private practitioner with a sizable gay clientele had, since late 1979, been spotting numerous cases of persistent long-term fatigue, reminiscent of mononucleosis, among his patients. Most of Dr. Joel Weisman’s fatigued gay men were infected with the usually harmless cytomegalovirus.
In January 1981 one of Weisman’s patients worsened significantly. In a few weeks, the thirty-year-old man’s lymph nodes had swollen markedly, he’d lost more than thirty pounds, developed a pronounced Candida infection, and was running a daily fever of over 104°F.
By February, when it was clear the man wasn’t improving with amphotericin B antifungal therapy, Weisman had him admitted to the UCLA Medical Center. Weisman and Gottlieb discussed the case, as well as other apparently odd infectious diseases seen among local homosexuals. When Weisman’s patient also developed PCP in April, the doctors feared they were seeing a pattern.
By then Gottlieb had three other homosexual patients under treatment for PCP, none of whom was responding to treatment.
The similarities were striking: all five men were Caucasian, gay, aged between twenty-nine and thirty-six years at the time of PCP diagnosis, suffered PCP along with Candida and cytomegalovirus infections, had abnormal immune responses, reported multiple sex partners, and occasionally used amyl nitrite “poppers†as sexual stimulants.
One admitted to using injectable narcotics.
The “poppers†intrigued Weisman because he knew that use of the cardiovascular stimulants had recently become a fad all over the United States. Men believed the stimulants magnified the orgasmic rush of sex and enhanced their prowess.
Gottlieb wrote up a brief report and sent it to the CDC’s Sexually Transmitted Diseases (STD) division, where Dr. Mary Guinan found it interesting enough to bring to Jim Curran’s attention. They discussed the coincidences and, knowing that a number of STDs were epidemic in the gay community, speculated whether this might be due to any of several microbes then rampant in that population. Guinan pointed out that orders for pentamidine, an anti-PCP drug that physicians ordered through her office, had jumped from the usual fifteen requests a year to thirty in the first five months of 1981.
Curran decided to put the Gottlieb paper in the CDC’s Morbidity and Mortality Weekly Report, and on June 5, 1981, U.S. physicians read for the first time of a curious new health problem in homosexual Americans.
The section written by Gottlieb and his Los Angeles colleagues was followed by an editorial, penned by Curran.
The occurrence of pneumocystis in these 5 previously healthy individuals without a clinically apparent underlying immunodeficiency is unsettling. The fact that these patients were all homosexuals suggests an association between some aspect of a homosexual lifestyle or disease acquired through sexual contact and Pneumocystis pneumonia in this population … .
All of the above observations suggest the possibility of a cellular-immune dysfunction related to a common exposure that predisposes individuals to opportunistic infections such as pneumocystis and candidiasis.1
On July 1, 1981, Dr. Paul Volberding opened San Francisco General Hospital’s first designated cancer clinic. Not long out of residency, Volberding was pleased to be appointed acting chief of oncology for the city’s primary public hospital, which also served as a teaching facility for the University of California at San Francisco Medical School. He selected as his nurse Gayling Gee, an experienced health provider whose staff record displayed a rare mix of administrative and patient care talents.
No sooner had the clinic officially opened than a nurse from another ward handed Gee the charts on an indigent cancer patient who had already been seen by several of the hospital’s doctors. All of the physicians were baffled by the case. Gee looked at the diagnosis: Kaposi’s sarcoma.
“Never heard of that one,†Gee said.
“Well, take a look,†the other nurse said. Soon, Gee and Volberding were examining a thin young man with pleading eyes. He had made the rounds of doctors, seen the befuddlement his case prompted, and was frightened.
Volberding studied the purplish-blue splotches on the man’s body. These endotheliomas—out-of-control growths of the surface vascular networks on the skin—were a form of cancer extremely rare in the United States, though common in some parts of Africa.
“What do you do for a living?†Volberding asked, wondering if there might be some toxic chemical explanation for the tumors.
“I’m a hooker,†the man replied. “Can you help me?â€
Volberding had no idea how to respond.
Four days later the CDC published a report linking Kaposi’s sarcoma, PCP, and homosexuality.2 It described twenty-six cases of gay men in California and New York City who, though averaging just thirty-nine years of age, had all contracted the rare skin cancer usually seen in the United States only among elderly men. Eight of the men had died of either the cancers or other infections, most succumbing within a year of diagnosis. All but one of the men were Caucas
ian; the one exception was black. All were gay; no information about possible injecting drug use was provided.
The CDC also reported that the numbers of PCP cases were up, from five in Gottlieb’s report a month earlier to a total of fifteen, all in California.
Credit for seeing a link between the skin cancer and prior PCP reports went to New York City dermatologist Alvin Friedman-Kien, who had documented an additional fifteen Kaposi’s sarcoma cases by the time the CDC’s report was released. That meant that at least forty-one gay men had Kaposi’s sarcoma in New York, Los Angeles, and San Francisco, and some fifteen others had Pneumocystis pneumonia.
A review of the medical records at New York City’s Bellevue Hospital showed that no men under fifty years of age had been diagnosed with Kaposi’s sarcoma during the previous decade. Suddenly, there were thirty-three such cases in New York City.3 San Francisco had two cases, though records at the city’s five largest hospitals revealed no Kaposi’s in men under sixty-five during the prior decade.
“Why, at this time, the disease would appear among gay men is unclear,†Dr. John Gullet of San Francisco’s St. Francis Hospital said. “All over the country scientists are working on this with a sense of urgency. Maybe we have a new virulent strain of CMV [cytomegalovirus]. That would be the most plausible explanation.â€
He added that the patient he had treated for Kaposi’s “had no T cells. Zero. Zip.â€
Curran, Guinan, and Harold Jaffe were convinced that something serious was going on, but they lacked the resources for a full-scale study. Curran appealed to CDC director Dr. Bill Foege, who was fighting a losing battle with the new budget-cutting administration of Ronald Reagan. Swept into power in November 1980 on the promise of slashing the federal bureaucracy, Reagan vowed to reduce spending in all areas other than the military, domestic law enforcement, the space shuttle program, and a handful of other sectors. He had also promised to cut taxes, and sent a bill for the largest tax reduction in U.S. history to Congress for approval.
When Curran asked for funds for a full-scale investigation of the mysterious outbreak among homosexual men, he was told that massive cuts in the CDC budget were expected. The White House was, at that moment, lobbying hard for its tax reduction plan, which would be passed on July 29. Reagan’s budget-axer, David Stockman, was submitting daily memos to federal department directors pointing out areas of alleged fat and duplication in their budgets. Directors such as Foege were meant to take such memos seriously.
To protect Curran’s budget Foege took the epidemiology group out of the STD division, which expected severe budget cuts, and hid it in his own discretionary budget under the name Task Force on Kaposi’s Sarcoma and Opportunistic Infections. He told Curran that ought to protect the admittedly paltry funds from David Stockman’s ax. Nobody in the White House would know what Kaposi’s was until they researched it and learned it was a cancer of elderly men—Reagan’s constituency.
Curran was discreetly named director of the quietly created task force, overseeing a budget of less than $200,000 and a staff of twenty, most on loan from other programs.4 The entire CDC budget for 1981 was just $288 million.5
Meanwhile, Gayling Gee was having a terrible time dealing with her Kaposi’s patient. Homeless, moving from one San Francisco crash pad to another, the young prostitute would scrounge enough change every morning to buy a cup of coffee, a doughnut, and bus fare to the hospital.
“Help me, Gayling,†he would plead. “I don’t know what to do.â€
Too weak to work at any trade, he fell way outside the social services safety net of the day. Gee had no idea how to help.
In August, Volberding admitted him to the oncology ward: soon, he was dead.
There was little time to mourn. Volberding and Gee admitted three other gay men with the same strange cancer, and elsewhere in the hospital Dr. Constance Wofsy was handling an ever-increasing load of Pneumocystis cases.6
By the end of August the CDC had reports of 107 cases of either Kaposi’s sarcoma, PCP, or the two combined in ninety-five homosexual men, six heterosexual males, five men of undetermined sexual orientation, and one woman.
“Whatever this is, it’s not going to go away by itself. And it isn’t an isolated event,†Jaffe told fellow CDC task force members. Curran and Don Francis, who was assisting the team from his Phoenix laboratory, felt certain an infectious agent of some sort was responsible. But Jaffe wasn’t ready to rule out a role for “poppers†or other factors in the gay scene. At two recent physicians’ meetings, he had learned eye-opening facts about sexual practices in the gay community and about the rapidly growing, largely unreported numbers of cases of what appeared to be a radical immunodeficiency disease.
“Something terrible is happening,†Jaffe said. “Something really terrible.â€
When the staid, married, heterosexual physician traveled to San Francisco, Los Angeles, and New York to see things firsthand he discovered what seemed like an unimaginable world. Local physicians who specialized in treating gay clients told him the new disease was related to practices in the bathhouses. From them, Jaffe learned of “fisting,†“rimming,†and a variety of stimulating drugs, all of which, the physicians said, could play a role in the odd ailment. The doctors assured Jaffe that these were the sexual practices of a clear but very sexually active minority of the gay community—some having upward of 200 partners a year.
The San Francisco Health Department’s Dr. Selma Dritz was a key source for Jaffe. Since 1974 she had logged the escalation of sexually transmitted diseases within the city’s gay population. Of the roughly 75,000 San Franciscans who entered the city’s venereal disease clinics each year during the 1970s, 80 percent were gay men, Dritz said. Between 1974 and 1979 she had seen staggering increases in disease rates among homosexual men: amebiasis had increased by 250 percent; giardia infections jumped from one in 1974 to 85 in 1979; hepatitis A case reports doubled, hepatitis B tripled. Twenty percent of randomly tested gay San Franciscans in 1979 were gonorrhea carriers, perhaps 10 percent carried herpes simplex, and some smaller percentage were infected with syphilis.7
Most sexually active gay men living in cities like New York and San Francisco didn’t go to straight doctors—they had their own physicians. By the time Dritz’s words appeared in a leading scientific journal, the gay medical world had become nearly as separated from the mainstream as had the gay community as a whole. Even venereologists like Jaffe had barely an inkling of the profound biological events taking place in the gay population. And as savvy physicians like Dritz opened his eyes, Jaffe was shaken: what if this new ailment were caused by a sexually transmissible agent?
By August, CDC sociologist Bill Darrow was thoroughly convinced that the strange, lethal ailment was caused by some sexually transmitted microbe. He was also persuaded by the evidence that other factors, such as “poppers†and “fisting,†had no direct role in the disease. But he had to prove it.
Toward the end of the summer of 1981 Darrow began to urge fellow epidemiologist Andrew Moss at the University of California at San Francisco to get involved in the investigation. That fall Darrow and Jaffe met with Moss, hoping he would help the CDC gain access to San Francisco research data.
Moss listened, asked a lot of questions, and pondered the implications for San Francisco. In 1983 the city’s top gay Democratic Party leaders estimated that their constituency was 70,000 strong in a municipality of 650,000 people. If a sexually transmitted microbe was loose in such a large gay population, the potential for disaster was obvious.
In his characteristically perfunctory manner, the English-born Moss made suggestions and comments, never shying away from sexual matters or, as did most of his scientist colleagues, mincing words.
“Have you done the math, Bi
ll?†Moss later recalled asking.
“Well, what are you driving at?†Darrow replied.
“Look, we’ve got men in the city [San Francisco] fucking maybe 300 other men every twelve months, okay? So, for the sake of argument, let’s say only five percent of the gay community is that promiscuous. That’s about 2,750 men, seeing 300 partners a year, for, let’s say, five years. That’s 4,125,000 sexual encounters in five years. Now, even if only ten percent of those original men—say, 275 of them—were infected with whatever this is, that would still mean 412,500 sexual encounters in five years. Assume an efficiency of transmission of, oh, let’s say just one percent to be very conservative. That still means that 4,125 men in San Francisco are infected,†Moss concluded.
Darrow succeeded in raising Moss’s interest, and within weeks the English epidemiologist was discussing with Volberding the possibility of setting up a disease survey of the gay community.
Though it wasn’t something Volberding would ever acknowledge publicly—he’ d taken the Hippocratic oath, after all, obligating him to treat patients regardless of their ailments—if this was an infectious disease, he was frightened. He had seen a number of patients by then, witnessed their slow, agonizing deaths, and concluded that “this is the worst disease I can imagine.â€
He didn’t want to get it, or to feel responsible for the safety of Gayling Gee or other staff at San Francisco General Hospital. Procedures such as bronchoscopies to test for Pneumocystis, frequent blood tests, and skin biopsies put him and his staff in contact with the patients’ body fluids.
“I’ve got two kids at home,†Volberding often thought, never allowing himself to mentally complete the sentence.
Volberding had often faced death among his predominantly elderly oncology clientele. All physicians had tricks for maintaining enough emotional distance from their patients’ ordeals to avoid the risk of becoming emotionally paralyzed and unable to practice medicine. It wasn’t difficult to accomplish when the patient was fifty years older than the doctor. But, like Volberding, most of the men with this disease were white middle-class guys who had gone through college during the 1960s. The more time Volberding spent with them, the more he found that he had in common with the dying men. It was easy to feel afraid.
The Coming Plague Page 44