‘The Disease of the Century’: Reporting on the Origin of AIDS

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On July 3, 1981, The New York Times published a story by physician and medical correspondent Dr. Lawrence Altman titled ”Rare Cancer Seen in 41 Homosexuals.” The cancer was Kaposi’s sarcoma, a tumor caused by a viral infection and characterized by dark spots on the skin. While the disease usually struck older patients and progressed slowly, these 41 cases had appeared in—and were quickly killing—men as young as 26. Doctors were puzzled: “The cause of the outbreak is unknown, and there is as yet no evidence of contagion,” Altman wrote, noting that the patients had “severe defects in their immune systems.” Kaposi’s is now known to be a hallmark of AIDS; at the time, though, AIDS was still an unknown. Altman’s article was the first story the Times would publish on the disease that had yet to be understood, identified, or even named. As Randy Shilts documented in And the Band Played On, mainstream media reports on the escalating epidemic were originally devastatingly sparse; the Times ran only two more articles related to the disease that year (“setting the tone for non-coverage nationally,” Shilts wrote). A story about AIDS didn’t appear on the paper’s front page until 1983, as the nature of coverage nationwide was shifting from lethargic to hysterical. Even then, there were few facts to be reported; journalists, like doctors and their patients, knew little about the disease. As one man recalled of his diagnosis for New York magazine in 1983: “He said, ‘You are immune-deficient.’ I said, ‘What does that mean?’ He said, ‘Nobody really knows.’” But where there was little information, there was plenty of fear, reflected in and bolstered by headlines like “AIDS: Fatal, Incurable, and Spreading” (People) and “Now No One Is Safe from AIDS” (Life). “Paranoia and apocalyptic statements have abounded. More than one normally understated scientist has termed AIDS ‘the disease of the century,’” Time reported in 1985. “It is the virtual certainty of death from AIDS, once the syndrome has fully developed, that makes the disease so frightening, along with the uncertainty of nearly everything else about it.” * * * Altman continued to write about AIDS as the Times’ medical correspondent up to—and after—his retirement from daily journalism in 2009 (he still writes the “Doctor’s World” column and occasional news stories). In 2011, 30 years after his first article, he penned a retrospective on his years covering the disease, titled “30 Years in, We Are Still Learning from AIDS.” “AIDS still presents extraordinary challenges—not least to journalists trying to chronicle the epidemic’s unfolding story,” he wrote, “to remind a new generation of the importance of safe sex, and to follow the sometimes halting effort to make effective drugs available to all who need them.” I talked to Altman about his experience covering AIDS in the 1980s, in the earliest years of the epidemic—when, as he wrote, “we had little idea what we were dealing with.” An edited and condensed transcript of our conversation follows. Cari Romm: What went into reporting that first story in 1981? Lawrence Altman: When I came to work with the Times, I had time to practice medicine as well as write. In the spring of 1981, I had finished a tour at Bellevue [Hospital] and NYU … It was just at the time when they had shot Reagan and shot the Pope. I had been intending to write about AIDS in the spring, but had to postpone it because of covering the assassination attempts. The first story I wrote was July of ‘81. [In June], there was a report in the Morbidity and Mortality Weekly Report published by the [Centers for Disease Control and Prevention]. Making rounds at NYU, I’d seen cases—what was apparent in New York at the time was the preponderance of Kaposi’s sarcoma [a cancer often associated with AIDS]. AIDS didn’t have any name at that point as a disease, and the immune deficiency was only just beginning to be recognized. But there were a sizeable group of cases in gay men that were being reported. I’d also seen cases of generalized lymphadenopathy, the lymph nodes enlarged throughout the body. We had several patients with that, and in retrospect, they were developing HIV, but we didn’t know that at the time. That would have been in 1978, ‘79, maybe ‘80. Romm: And how was your article received when it came out? Altman: In The Village Voice, there was an article blasting me for ruining the gays’ [sic] July 4 weekend over something that had no good reason. [Ed. note: The Village Voice article, as Altman quoted in one of his own stories here, described “the despicable attempt of The New York Times to wreck the July 4 holiday break for every homosexual in the Northeast.”] There may have been panic among a small group, but in the general readership, I don’t think it caused a huge amount of excitement. The gay community was aware of something going on, and of the fact that there was a newspaper article about it. I’m sure it heightened anxiety, but I don’t believe that it created any more anxiety than existed beforehand. Romm: When did the tone shift? When did people start reporting AIDS as a big deal? Altman: Rock Hudson’s case [in 1985] made a lot of people who were following entertainment and celebrities and so forth aware of the disease. Some people have marked that as the point. I guess that’s as good as any to say that more people were aware of it. Certainly, for the first few years of coverage, there were people I met who didn’t know anything about the disease, Kaposi’s, the hunt for the cause. I don’t know if there were any more [of them] in New York than elsewhere, but I traveled frequently as part of my job, and I know I ran into people who hadn’t paid attention to it or weren’t aware of the importance of it at that time. Romm: Was it treated as a national story, or did people think of it as a news story local to New York and San Francisco? Altman: Well, New York and San Francisco would make it national, at least in the eyes of the Times. I was reporting from the national desk. In terms of how the public looked at it, well, these were two large cities, different areas of the country, so I would think that that’s national news … It would have been more recognizable in those cities at the time, but eventually, people recognized that it was seen throughout the country. I can’t put a specific date on it, but as time went on, more people became aware of it. People who had it went to see doctors in their own communities as opposed to in New York or San Francisco or Los Angeles or another large area … So what was in a small concentrated group in Manhattan or San Francisco in 1981 was being recognized throughout the country in cities, in hospitals. People might have acquired it on their travels and came back to smaller cities. Doctors there had to be attuned to it. I was covering it as a mystery disease at the time. My job was to cover the science and the medical aspects of it, and I was covering that and looking for developments in terms of what the cause might be. Who was being affected? Was it just gay men? Romm: How did you separate science from conjecture when no one, including public-health authorities, really knew what this mystery disease was? Altman: I would follow reports, go to meetings. I talked to doctors, I talked to patients. There was a gap in the beginning, in my point of view, for at least two reasons. First, we were covering the implants of the artificial heart that was going on at the same time [in 1982], and second, there were no major news events involving the mystery disease in the first year or so. You could report that the number of cases increased, but that could be anything. The case counts may change; that’s not really a news story. But from a medical point of view, I was looking for the important landmarks that would occur in better understanding the disease—finding the cause, finding a test for it, and so forth … I used to make rounds on these patients with other doctors, so I would see what would be going on. CDC would put out a certain amount of information, I’d report that. Journals and meetings would report some, and the first international AIDS meeting was in Atlanta [in 1985]. The virus was discovered in 1984. I went to Africa [in 1985], because the disease was being reported from Africa and in women in high numbers. It was tough covering AIDS in Africa, because of the charge that Americans were only interested in the disease because they were trying to use Africa as a scapegoat, that it was a disease of gay men in the United States and they were trying to blame other people in Africa. They didn’t want it covered. I remember patients throwing stones at the doctors. They had us as doctors making rounds and I was reporting on it in hospitals, and I remember them just not wanting coverage. It was a denial mechanism, similar to the denial mechanism that occurred originally in New York or San Francisco or elsewhere. It was four years later, but it was new for Africa. It had already taken place in the U.S. Romm: What do you mean by “denial mechanism”? Altman: Early on, it became apparent through epidemiologists and the CDC that the agent—it wasn’t known as a virus then—that the agent that was causing the cases could be spread through blood transfusions and blood products, but the blood-bank officials originally refused to believe that. They were dealing with small numbers at the time, but the small numbers were statistically significant and important, and that was an element of denial in that branch of the medical community. [When the disease was still appearing mostly in gay men], there would be some members in the gay community who would get sick and show symptoms, and others who didn’t. And they were trying to determine, “Well, okay, why wasn’t I affected?” or, “This can only affect other people and it isn’t something that’s going to affect me.” There was that aspect to the denial. There was denial that it was an infectious disease … And until it began to be reported in women [in 1982], there were people who said, “Well, I’m not gay, so this won’t affect me. Why is this a public-health problem?” without recognizing at the time that there was a virus, and that virus could be spread through blood transfusions and “bodily fluids” as the phrase became known. Romm: Were you able to get more specific than “bodily fluids”? What terminology could you use to talk about how the virus was transmitted? Altman: I think “bodily fluids” was used for quite a while. The journalism community was behind for quite a while in not being more specific about what “bodily fluids” meant. But also, public-health officials weren’t explicit in what they meant by “bodily fluids.” It was a time when the words “penis,” “vagina,” “sperm,” “intercourse,” “rectal intercourse”—those terms weren’t part of the everyday public vocabulary. They may have been in private, but it wasn’t as it is today. The phrase was, morning newspapers were “breakfast-table newspapers” and they were careful of the language that they used. It wasn’t just the Times—I’m talking about journalism. That changed as the cases started mounting and it became more apparent as a public-health problem. Romm: How did the terminology used to talk about the disease itself change? When did AIDS become the name? Altman: There were various names before AIDS was used. There was GRID, for Gay-Related Immune Deficiency. I’m not sure that anybody knows who came up with the phrase AIDS. It stands for Acquired Immune-Deficiency Syndrome, that’s clear, but I don’t know that anybody has ever pinned down exactly who proposed it. Those things probably get lost in the hurly-burly of everyday working when things are hectic. I think it just evolved. GRID came up fairly early as a name and then got dropped, and AIDS first came [in a CDC report in 1982]. It became AIDS from then on. The scientists recognized that it could affect more than gay men and that [GRID] wasn’t an accurate term. It was insulting to gay men, given the fact that the virus was affecting other people. Romm: How do you think public interest has changed over the years? Altman: There were complaints that AIDS was getting too much attention early on at the expense of other diseases. But when you’re dealing with a communicable disease, there’s probably going to be a disproportionate amount of attention in news media, because that’s something people can take action on and do something about. It’s been 33 years now [since the first Times article]. So you’ve had a whole generation that would have been born long after AIDS was discovered … So as time went on, I think it became more accepted as part of the spectrum of disease and health problems. Young people growing up had to take it into account and learn about it, but the real element of mystery and the “This couldn’t happen to me” type of syndrome happened long before the generation I’m talking about was born. But in 2014, we still have 50,000 people newly infected each year, and that’s held steady for about a decade or longer. It shows that not enough attention has been brought to it, and people still deny that they can get it and don’t take proper precautions. Infections occur, and none of them should occur. There’s been effective prevention from mother to newborn, and that’s been an important advance in the treatment and prevention of AIDS, but we still haven’t done well enough by any means in terms of preventing cases in the United States and throughout the world. The number of new infections still exceeds the number of people who get newly treated for AIDS. We’re still dealing with tens of millions of people … I think it’s a question for society to understand why a disease whose mode of transmission has been known for years still is causing an estimated 50,000 new cases every year. AIDS is one of many, many diseases, and how much attention do you give to each disease? Right now, Ebola is the disease that has, quite rightfully, attracted the most attention, but you have lots of other diseases that are affecting people. You’ve got hundreds of different kinds of cancers, you’ve got other infections, you’ve got chronic diseases. Newspapers report what is new, or something new about an old situation, but they’re not repeating the same information day after day once it’s no longer new. That’s the strength and weakness of journalism. This article was originally published at http://www.theatlantic.com/health/archive/2014/12/the-disease-of-the-century-reporting-on-the-origin-of-aids/383440/

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