by Randy Shilts
Gary Walsh lay awake in his bed when she appeared to him, with long white hair and outstretched arms. Gary recognized the woman as the mother of a good friend; she had died just a few months ago. She was stunningly beautiful and beamed a spectacular smile as she assured him, “Don’t worry, honey. I’ll help you over that line. And it ain’t bad at all here.”
38
JOURNALISM
November 4, 1983
SAN FRANCISCO PRESS CLUB
The press club had recruited Bill Kurtis, co-anchor of the “CBS Morning News,” to deliver the keynote address for the group’s annual awards dinner. As keynote speakers are wont to do, Kurtis opened his talk to the assembly of journalists with a little joke.
“I was in Nebraska yesterday and when I said I was going to San Francisco, people started talking about AIDS,” Kurtis said, smiling. “Somebody said, ‘What’s the hardest part about having AIDS?’”
Kurtis paused for his punch line: “It’s trying to convince your wife you’re Haitian.”
An uncomfortable laugh skimmed the surface of the crowd. Most people did not think it was funny. Several reporters nodded knowingly to each other, as if to say, “This is what you can expect from somebody who lives in New York.”
Kurtis clearly had misjudged his audience. Nevertheless, the joke reflected the dormant feeling among national news organizations, all of which were headquartered in Manhattan. AIDS remained something of a dirty little joke. Moreover, it was something you could josh about in crowds of reporters because you could safely assume that the disease had not touched the lives of the people who wrote the news and scripted the nightly newscasts. Homosexual reporters, particularly in New York, tended to know their place and keep their mouths shut, if they wanted to survive in the news business.
Newspapers like The New York Times and Washington Post solemnly insisted that they did not discriminate against an employee on the basis of sexual orientation. In practice, however, such papers never hired employees who would openly say they were gay, and homosexual reporters at such papers privately maintained that their careers would be stalled if not destroyed once their sexuality became known. Gays were tolerated as drama critics and food reviewers, but the hard-news sections of the paper had a difficult time acclimating to women as reporters, much less inverts. Few in the business ever talked about this. American journalism was always better at defining others’ foible than its own.
In New York, editors complained that nothing new was happening with the epidemic. Indeed, the more obvious breaking angles—such as the discovery of an accepted cause or a breakthrough in treatment—had not yet happened. Still, the numbers of new cases were rising exponentially, and even a modicum of investigatory journalism revealed a trove of flashy new angles for news stories.
The San Francisco Chronicle struck pay dirt in late November when a Freedom of Information Act request unearthed hundreds of pages of internal memoranda revealing the serious funding shortages at the Centers for Disease Control. The duplicity of many of the nation’s top health officials was also apparent by comparisons of the newly released memoranda and conflicting congressional testimony offered on virtually the same days. In Washington, administration officials braced for a torrent of journalistic investigations after the front-page Chronicle stories, but nothing happened. To other news organizations, AIDS was a science story or a human interest story, but for years to come, AIDS would not be a story to which standard journalistic techniques applied. Thus, the federal government did not have to fret that news hounds would dog their AIDS efforts. It wasn’t going to happen.
News coverage and the lack of it left a profound mark on local public policy. When the Institute for Health Policy Studies at the University of California in San Francisco later analyzed the differences between the municipal responses to AIDS in New York City and San Francisco, it concluded that the disparate quality rested in part on the vast difference in news coverage by the two cities’ major newspapers. Between June 1982 and June 1985, the San Francisco Chronicle printed 442 staff-written AIDS stories, of which 67 made the front page. In the same period, The New York Times ran 226 stories, only 7 of which were on page one. From mid-1983 on, the coverage of the Chronicle focused on public policy aspects of the epidemic, while the Times covered AIDS almost exclusively as a medical event, with little emphasis on social impact or policy. The study concluded, “The extensive nature of coverage by the Chronicle, aside from providing a degree of health education not found in New York, helped sustain a level of political pressure on local government and health officials to respond to the AIDS crisis.”
Nationally, the problem was not so much in what the press covered as in what they did not print. Indeed, throughout the epidemic, well-intentioned journalists went out of their way to calm hysteria. Particularly since the “routine household contact” fiasco, virtually every news story stressed that AIDS was not casually infectious and that it posed no threat to “the general population.” In the soul-searching that came later, journalism reviews criticized news organizations for not discussing the specific sexual practices that spread AIDS, most notably anal intercourse. This was a proper criticism, but it was a minor one. The fact that it was the only major self-criticism by the news business was a measure of the epidemic’s continued trivialization, even after AIDS was a major national news story.
It wasn’t that the news organizations weren’t thinking about AIDS during this time. Everybody talked about it; everybody joked about it. Planning for coverage of the 1984 Democratic National Convention in San Francisco created unusual concerns for sophisticated Manhattanites journeying to what they considered the AIDS capital. NBC News, for example, queried local caterers as to whether homosexuals would be serving food if hired to cater the NBC news staff. NBC wanted assurances that their staff would not be served by gays, it turned out, because they were afraid of getting AIDS.
NATIONAL CANCER INSTITUTE, BETHESDA
The laboratory of Tumor Cell Biology fills the B corridor of the sixth floor of red-brick Building 31 at the National Cancer Institute. The cinder block walls are painted a cheerful yellow; the sound of centrifuges echoes behind gray doors sealed with double air locks to keep the labs’ deadly retroviruses from escaping. For six months, B corridor was headquarters for the nation’s laboratory war against AIDS, and the man in office 6B03 was Dr. Robert Gallo, its commander.
In September, the Pasteur Institute had sent to Gallo isolates of its LAV to help establish their case that LAV was not a relative of HTLV-I but a distinct virus. The chronology of this virus’ arrival in Bethesda would later prove very important.
Shortly after receiving the virus, Dr. Gallo had started forging major breakthroughs in his AIDS research. For more than a year, Gallo’s progress had stumbled on one key point. His laboratory staff could not grow whatever virus was causing AIDS. It kept killing his cell lines. Gallo was sure some kind of retrovirus was at work. For months, he had detected reverse transcriptase activity, but that didn’t do him much good when he needed to isolate the specific virus, sustain the microbe’s growth, and establish that this was the cause of AIDS. Gallo had a nagging fear that the retrovirus he was seeing was simply another opportunistic infection. Without isolates of a specific virus, there was no way to resolve this question.
Gallo also was getting impatient. In the fall, he had confided to an AIDS writer from the gay paper the Advocate that if his HTLV studies did not prove fruitful soon, he would shift his research to other diseases and more promising fields. By November, however, his doubts had passed. Although Gallo told few colleagues, he believed he had now isolated the virus that caused AIDS.
Meanwhile, rivalry continually dogged AIDS research at the National Institutes of Health. Robert Gallo’s temper had earned him many enemies within the NIH. Some NIH doctors wouldn’t allow their lab techs to deliver tissue samples to Gallo, so Dr. Sam Broder, who was working with AIDS patients at the NIH hospital, took to walking specimens from patients to Building 31 himself.<
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Sniping also continued between the National Cancer Institute and the National Institute for Allergy and Infectious Diseases. The strangest twist came in late October when Dr. Ken Sell and other NIAID researchers announced that they had discovered a fungus they believed might cause the syndrome. The fungus, they said, mimicked the immune suppression caused by drugs used to artificially slow immune response. NCI doctors believed that the announcement by Sell, who had served as AIDS coordinator for NIAID, was made to embarrass Gallo and detract from his retroviral theories. Researchers at the Centers for Disease Control thought the fungal theory bordered on witchcraft. Few suspected that the announcement was anything other than the continuation of the NIAID-NCI feud over which institute should have primacy in AIDS research.
Scientists outside the NIH expressed more open skepticism about the HTLV-I hypothesis. In no study had HTLV been found in more than 25 percent of AIDS patients. These isolates tended to come from Haitians who hailed from a region where the leukemia virus is endemic anyway. Harvard’s Dr. Max Essex, the leading proponent of HTLV-I, argued that the HTLV-I antibody tests might not be sensitive enough, but this convinced few scientists. By October, Dr. Paul Black of Boston University School of Medicine warned in the New England Journal of Medicine that HTLV-I had been “overplayed to the point where I worry that it will diminish interest in other viruses…. I think it’s getting an overwhelming emphasis. There’s a lot of hype associated with it.” In backing his “serious doubts” about HTLV-I, Black noted that HTLV “immortalized” cells, allowing them to propagate madly, while the AIDS virus had the opposite effect and was killing lymphocytes.
Research in other government laboratories continued to bog down because of the lack of resources. Dr. Bill Blattner, division director of the NCI Environmental Epidemiology Branch, where NCI AIDS research began in June 1981, continued to pilfer from other research projects to support his AIDS studies. Although money now existed for AIDS research, a hiring freeze had aborted Blattner’s attempts to add scientists to his staff. Even worse, Blattner was unable, because of the freeze, to replace researchers when they left his division. At times, when he heard NIH officials tell Congress that AIDS researchers had all the money they needed, he wondered whom the officials were talking to. They obviously weren’t talking much to the researchers.
At the Centers for Disease Control, laboratory work stalled because Dr. Gallo had made good on his threat to deny HTLV reagents to Dr. V. S. Kalyanaraman as punishment for leaving the NCI. Dr. Kaly was left to start his retrovirus lab from scratch and hunt down people who were infected with HTLV-I and HTLV-II so he could culture the retrovirus and antibodies himself. Don Francis opened all his lab reports at every weekly meeting of the CDC AIDS researchers in Atlanta with an enumeration of the problems caused by lack of space, lack of staffing, and lack of money. Money had started to trickle in from the various congressional funding initiatives, but, as was always the case in AIDS studies, it tended to come a day late and a buck short.
When the San Francisco Chronicle pressed Dr. James Curran for an assessment of funding needs in the wake of the Freedom of Information Act disclosures, Curran conceded that problems had troubled the early efforts of the AIDS Task Force at CDC but that everything was fine now. “This is cursing the darkness after the candles have been lit,” said Curran. “You can’t single out the government; everybody was late in picking up on how serious this was. The media wasn’t around two years ago and neither were the congressmen who are talking so much now.”
At both the NIH and CDC, anxiety grew more profound. In early 1983, virtually everyone had expected that the AIDS virus would have been found by then.
In Paris, over six months before, scientists had published articles on the virus that caused AIDS, but few were paying much attention to them. With characteristic French understatement, Pasteur Institute researchers recalled the fall of 1983 as the time of “the long walk across the desert.”
The Pasteur scientists were convinced they had accumulated enough evidence to decisively demonstrate that they had isolated the virus behind the epidemic. They had cultured virus or detected LAV antibodies in all ten lymphadenopathy patients on whom they had performed blood work, and they were working on a standardized test to detect LAV antibodies for use in blood banks. They had sent the virus to both the CDC and the Max-von-Pettenkofer Institute in Munich for inoculation in chimpanzees. Exhaustive immunological work determined that the virus selectively targeted the T-4 lymphocytes, the very cells that disappeared in AIDS victims, setting the stage for the final collapse of the immune system. Trials of the antiviral drug HPA-23 were under way among sixty French AIDS patients to determine the toxicity of the drug.
Despite all their evidence, the Parisian doctors found that the American scientific establishment was reluctant to take their work seriously. Their research papers were subjected to lengthy delays. In rejecting one paper, an American reviewer took a nationalistic tact when he dismissed LAV as “the French virus.” Behind the scenes, Robert Gallo at the NCI continued to spread the word that LAV was nothing more than a laboratory contaminant. Repeatedly, Pasteur researchers heard from their American counterparts that, yes, the Pasteur work was interesting, but they would wait to see what Gallo came up with. Willy Rozenbaum, returning to his tropical disease ward after such conversations, continued to see new patients parading by with their grisly array of diseases, and wanted to shout: “People are dying. We are losing time.” But there was no one to hear him.
The disheartened doctors often ended their fourteen-hour days commiserating at a Left Bank cabaret, the Paradise Latin, where they pondered what more they could do to make people believe them. The researchers’ spouses joked that they would form an anti-SIDA committee to get the researchers’ minds off the relentless frustration of having the answer but being ignored.
In November, Francoise Barre, the Pasteur researcher who had discovered LAV the previous January, ran into Bob Gallo at the international airport outside Tokyo. Both were bound for the same scientific conference, so they shared a cab into Tokyo. During the ride, Gallo confided that at last he had discovered the retrovirus that caused AIDS. It might even prove to be similar to LAV, he said.
Back in Paris, the Pasteur researchers had no doubt that whatever AIDS virus Gallo had discovered would indeed prove to be LAV. Perhaps, finally, they would gain their long-denied recognition.
Dr. Jay Levy, researcher at the University of California at San Francisco, had done a sabbatical with Dr. Jean-Claude Chermann at the Pasteur and had maintained his links to the institute over the years. When Levy visited Paris in September, he was impressed by the Pasteur’s research, although he turned down an offer to take LAV back to San Francisco with him. He intended to find the AIDS retrovirus himself and did not want skeptics to later charge that his own research was tainted by lab contamination. Within a month of his return, Levy had cultured six isolates of a retrovirus from the blood of local AIDS patients. He decided against speeding the research into publication until he could accumulate more definitive proof that his agent was indeed the cause of AIDS and not an opportunistic infection.
It was November 1983, and science at last was closing in on the viral culprit that bred international death. Unfortunately, the scientific intrigue that would surround the discovery had only begun.
November 7
MATT KRIEGER’S JOURNAL
For the third time in some four weeks, Gary is in the hospital. This time with pneumonia. Not Pneumocystis pneumonia, just regular pneumonia.
Pneumonia, Kaposi’s sarcoma, severe psoriasis, herpes, an anal fissure, a bad tooth that needs a root canal (but can’t be treated because of risk of infection and the fact that he couldn’t withstand the procedure). Probably more infections that I can’t think of.
He’s been extremely weak, especially the last three or four days. Too weak to walk, to eat his food, to shower, even to squeeze a tube of toothpaste or push the button on the shaving cream can.
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sp; I stayed with him three of the last four nights…. During these times, his conversations go to his inability to withstand the pain. “This is no way to live. I’ve lost my fighting spirit. I don’t know how much longer I can make it.” And that’s so understandable to me now, even though I can never even vaguely comprehend the severity of his pain.
To my surprise and pleasure and at his suggestion, I slept on his bed two of the three nights. We sleep on far opposite sides of his big platform bed. Still I have sexual feelings for him. Although I haven’t felt very sexual in a while….
[This morning] it was the talk with the nurse just before I left that first disturbed me. She told me of Larry, a guy with AIDS on the floor. Larry and Gary never met but exchanged greetings through their doctor. Everyone said Larry was friendly, wonderful, terrific, fun, and caring. Now he’s crazy, senile, and psychotic, they say. He thinks he’s being raped. Thinks he’s dead. Thinks he’s at home. Outbursts of anger at people he loves. Doesn’t recognize people. He’s given up and he’s mentally gone. He’ll be dead very soon.
What must this do to Gary to hear this? It must be horrible.
Then, after I left Gary’s room, I ran into a nurse, Angelina. She confirmed the report about Larry. “And this one in here, with KS,” she said to me just outside a patient’s open door, “he’s going to die in two or three days. He’s been here two months. His face, it’s horrible. Do you want to see it?”
No thanks.
“I’m afraid for Gary,” she said. “Larry had the same terrible headaches just a few weeks ago.”
I went into the hospital with hope. I left with a sickness in my stomach.
