And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition (21 page)

February

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By the time Dr. Joel Weisman had called Dave Auerbach, the CDC’s field man with the Los Angeles County Department of Public Health, word had also leaked from the West Hollywood Health Center that there appeared to be a number of links between the early GRID cases in Los Angeles and the heavily gay beach town of Laguna Beach in neighboring Orange County.

Auerbach then started interviewing all the GRID cases in the county. It was somewhere in these interviews that he first heard about the Air Canada steward. There were so many airline stewards whose names came up in the investigation, Auerbach would always be grateful that this steward had an unusual appellation that stuck firmly in his mind. It was hard to forget a name like Gaetan Dugas.

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UKE’S
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OOSEVELT
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OSPITAL
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ITY

The lab tests were so uniform that there was no denying their validity. Dr. Michael Lange had recruited the subjects from the Gay Men’s Health Crisis, Columbia Student Health Service, and the gay students group at Columbia University, thinking he could get some measure of cytomegalovirus among sexually active gay men and perhaps find some link between CMV and GRID. The CMV connection was not nearly as pronounced in the first lab tests as the amazing deficiencies these men almost uniformly showed in their immune systems. Four out of five of the gay men he tested had a serious depletion in their T-helper lymphocytes. They may not be showing overt signs of gay cancer yet, Lange figured, but substantial numbers of gay men clearly have something wrong with their immune systems, and there is a disaster of great proportions lurking ahead.

Unsettling news came from every borough. Haitians were showing up at Brooklyn hospitals with toxoplasmosis, the same brain infection that had so mercilessly killed Enno Poersch’s lover, Nick, just a year ago. A number of them also contracted
Pneumocystis,
implying a connection with GRID. The Haitians adamantly insisted they were heterosexual.

There were also more junkies coming down with gay pneumonia in the Bronx. At the Albert Einstein College of Medicine, Dr. Arye Rubinstein was trying in vain to get his colleagues to believe that the sick babies he was seeing were also victims of GRID. Rubinstein had sent his research paper to the
New England Journal of Medicine,
but he received no reply. He knew this was not unusual given the snail’s pace of scientific publishing. But other scientists were saying that Rubinstein’s hypothesis was improbable if not altogether impossible. By its very name, GRID was a homosexual disease, not a disease of babies or their mothers.

Michael Lange also found little support or encouragement for his GRID studies. He was spending tens of thousands of dollars on the expensive lymphocyte tests but had no grant money to pay for them. His already harried staff had to volunteer time for the research. Colleagues, meanwhile, counseled Lange to get off this GRID kick and return to serious lab research.

“This is nothing,” he was told on several occasions. “It will disappear. You’re getting off the path. Get back to research.”

Lange was, they warned, threatening his scientific career with these diversions.

The young doctor wondered whether he would get such advice if an analogous epidemic was striking anyone other than homosexuals. He persevered, hoping that the National Cancer Institute or the CDC would kick in money soon. Money, he knew, had a way of bringing respectability to areas of scientific investigation.

February 22

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ENTERS FOR
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ISEASE
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ONTROL
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EPATITIS
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ABORATORIES
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HOENIX

Don Francis had dreaded this conversation for months, although he was hardly surprised. Francis had been spending the first months of 1982 agitating for more money for lab research into GRID and wanted to start injecting primates to see whether he could track down a virus. He was convinced that some virus was behind the disease, and they’d never get to controlling it if they didn’t first prove this key point. Francis wanted to use chimpanzees because their immune system was most like humans’ chimps also were the most expensive lab animals, running about $50,000 each. As chief of the Center for Infectious Diseases, Dr. Walter Dowdle was in charge of the GRID budget at the CDC, so he had to give Don Francis the depressing news on the phone.

“There is no money,” he said. “This is a worst-case situation.”

When Francis got off the phone, he was relieved that he was still in Phoenix and not Atlanta. He was in charge here. He called Bud the handyman and started detailing the tasks that needed to be done. Walls needed to be torn out; new labs needed to be constructed. The money will have to come from somewhere, Francis thought. Even if it cost him his job, he’d push on.

In Atlanta, staffers at the KSOI Task Force fielded calls daily from health officials eager to hear the results of the case-control study. In the highly competitive scientific world, it didn’t take long for some to speculate that the CDC might be holding out their research for publication. The glory of getting their studies in, say, the
New England Journal of Medicine
might be good for a few million in research grants, everybody knew. It was almost easier for the CDC to let this gossip float than confess to the truth, that they couldn’t release the results because they didn’t have the nickels and dimes to hire their own statistician. Even while health officials like Selma Dritz were desperate for the study’s results to see whether there was anything she could do to curtail the spread of the disease, all the task force doctors could do was assure callers that the information would be forthcoming. And week after week after week, they told everybody to call back next week.

Promising areas of investigation also were being ignored for lack of money. Sitting on somebody’s desk at the CDC was the proposal from Paul O’Malley, an earnest health inspector who had headed up the San Francisco branch of the CDC’s hepatitis study. In recent months, as he’d been wrapping up the hepatitis work, he stumbled across an interesting phenomenon. An inordinate number of GRID victims were among the 7,000 local gay men who took part in the hepatitis study. Of the first twenty-four GRID cases in San Francisco, in fact, eleven were in the hepatitis B cohort. O’Malley talked to Don Francis and came away agreeing that GRID could be the work of some blood-borne virus that was spread through sex. O’Malley also knew that the CDC had stored blood samples from these 7,000 men in the refrigerators of the Phoenix hepatitis lab.

This hepatitis cohort probably presents the best group in the world to study for this disease, O’Malley figured. Not only are years of their medical pasts sealed in little vials in government refrigerators, but they filled out questionnaires that detailed all their sexual habits. Most still lived in town and could be followed for the next few years to see what happens to them.

Who comes down with this disease and who doesn’t? Can they go back to those blood samples from 1978 and 1979 and find where this thing started? How is it spreading? The most important clues to this epidemic could be in the CDC’s own refrigerators, and they just hadn’t looked.

O’Malley enthusiastically told Harold Jaffe of the CDC Task Force all about this in early 1982. Jaffe said he’d try to pry loose some funds for the study.

Two years later, he did.

In late February, the Centers for Disease Control reported that 251 Americans had contracted GRID across the country; 99 had died.

February 25

The story of the first
Wall Street Journal
piece on the epidemic would later be cited in journalism reviews as emblematic of how the media handled AIDS in the first years of the epidemic. The reporter, it turned out, had long been pressuring editors to run a story on the homosexual disorder. He had even written a piece in 1981 that the editors refused to print. Finally, the reporter was able to fashion an article around the twenty-three heterosexuals, largely intravenous drug users, who were now counted among GRID patients. With confirmation of bona fide heterosexuals, the story finally merited sixteen paragraphs deep in the largest-circulation daily newspaper in the United States, under the headline: “New, Often-Fatal Illness in Homosexuals Turns Up in Women, Heterosexual Males.”

The gay plague got covered only because it finally had struck people who counted, people who were not homosexuals.

U
NIVERSITY OF
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ALIFORNIA
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AN
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RANCISCO

At the Kaposi’s Sarcoma Clinic, doctors raced to save lives and devise treatments for diseases that had never appeared in the textbooks. Donald Abrams, who, at thirty-one, was the youngest doctor on the GRID team, was strongly asserting that clinicians had to drop the time-tested use of chemotherapy on these KS patients. That might be what the experts tell you to do, he maintained, but the textbooks were all written before GRID. Chemotherapy worked only because it kept cells from dividing. Since cancer cells, by definition, divided most rapidly, the therapy frequently slowed the cancer. But it also slowed the normal cells that were supposed to divide, such as in the mouth, the gastrointestinal tract, and most significantly, the blood. Chemotherapy might kill the cancer, but it would also stop the lymphocytes from growing; it might kill the patient, Abrams warned. In other cities, particularly New York, the experts weren’t interested in what some thirty-one-year-old whippersnapper from San Francisco had to say, so the chemotherapy continued and patients died. The experience of the San Francisco clinic was beginning to outpace that of any other hospital because it concentrated patients in one place, and soon the clinic began exploring other drugs.

Already, even in those early months, work at the clinic was taking on a nightmarish quality as stunned doctors watched patient after patient develop some new horrifying aspect of the disease before sinking toward a miserable death. For Marc Conant, Paul Volberding, and Don Abrams, few of the declines were as petrifying as that of Simon Guzman. Simon appeared to be suffering from an attack of lymph cancer in his brain, the first time the doctors had detected such a disease in a GRID patient. The Kaposi’s sarcoma, meanwhile, was relentless. With his once-handsome face completely disfigured by the Kaposi’s lesions and his body swollen by medications, Simon had taken on the appearance of the bloated and scarred Elephant Man. Abrams started taking monthly photos of his face to study how the disease progressed.

There was also the problem of Simon’s rampant diarrhea. Repeated tests revealed nothing. Finally, an Air Force laboratory sent back test results that left the UCSF experts speechless. Simon was infected with
Cryptosporidium,
a parasite that normally inhabits the bowels of sheep. As far as anybody knew, the diagnosis marked the first time that any human being had ever been reported to be suffering from cryptosporidiosis.

When Selma Dritz heard the report at one of the weekly discussion meetings after the KS Clinic, she felt a keen scientific thrill. This, she knew, was the cutting edge of health sciences, hearing about the first human case of a disease. She also perceived, for the first time, an even deeper dimension to the dread that lay behind the thirty-five reported GRID cases in San Francisco. The mere numbers she tabulated and the arrows and circles on the blackboard did not begin to tell the stories of the human suffering they were seeing today and the appalling misery they undoubtedly would see tomorrow.

On a hunch, one of Simon Guzman’s doctors tracked down the preeminent expert of
Cryptosporidium
at the agriculture department of the University of Iowa. Of course, he was very familiar with the
Cryptosporidium
parasite, the Iowa professor said. The San Francisco doctor was relieved; maybe there was some easy treatment.