Special ‘gay cancer’ report part 1: The Epidemic Continues, but help against AID may be on the way

The July 1982 issue of PGN.

by Nathan Fain on July 9th, 1982, page 1.

Yes, it is frightening. And yes, as this issue went to press, nobody on earth knew why more than 400 Americans have suddenly lost their natural ability to ward off a narrow range of rare diseases. Yes, it could be contagious. And you could get it. You might even die.

But all these scary possibilities are no occasion for panic. This is no plague, no ‘gay cancer,’ nor is any god leveling a fiery finger on cities of the plain. Despite all those tempting urges to assume the Dark Ages are back for a national tour, gay men must resist the several assaults on our sense of ourselves. It is no time for superstition, no time for fear.

The year-old outbreak of immune-defense failure in mostly urban U.S. gay men has no precedent in medical history. It remains, as Sue Chastain observed in the June 20 Inquirer, “baffling.” Though the outbreak has claimed more lives than legionnaire’s disease, toxic shock and swine flu combined, it falls into a class by itself. Each of these recent outbreaks involved one ultimately isolated germ—bacteria in the first two, a virus in the third. Especially in the case of the 1976 incident at the Bellevue Stratford Hotel, Federal health officers were certainly baffled until they found tiny tubes of Legionella pneumophila lurking under their microscopes. One microorganism, case solved. And roughly four months after Legionella sailed out of the hotel’s lobby air-conditioning vents and into the lungs of those aging patriots.

Instead, the immune functions of more than 300 gay men have collapsed in virtually every big U.S. city and in several European capitals as well. After looking feverishly for a year, investigators at the Center for Disease Control (CDC) in Atlanta and other cities have not found one or two or even six causes to explain what has happened. They may not even be close. But, despite the absence of answers to the most critical questions, they can tell us a great deal already. And soon they will be able to tell us quite a bit more.

First, a few ground rules. Medical research operates slowly and carefully and under great secrecy. Because the outbreak of failed immunity is so profoundly complex and exotic, the rewards of solving its mystery are the very highest. Nobel Prizes will almost certainly be distributed to the team that first breaks the mystery. Millions of dollars in research money are at stake, as are the fragile reputations of the most distinguished researchers. Politics flavors and, in some cases, impedes the progress of finding answers. Federal health bureaus are now trying to untangle the chaos of many research projects underway in a dozen major cities, but unlike the Soviet Union, the U.S. cannot firmly control who does what. Nor can the U.S. command physicians to reveal what they know before they are fully prepared to defend their suggestions with hard proof.

Therefore, even though the medical establishment was immediately electrified by the news published in May last year in the CDC’s weekly bulletin (Morbidity and Mortality Weekly Report), and by the startling front-page story July 3, 1981 in the New York Times, medicine cannot say still what causes cancer, even though many billions of dollars have been spent over decades. One reason research remains electrified over this outbreak bears directly on the cancer dilemma. We are now, with this out break, probably far closer to understanding cancer than ever. It is highly likely that, once the outbreak is solved, part of that solution will involve the solution to cancer as well.

Research is now proceeding all over the place, in the highest medical centers, at the greatest speed. The problem is so interesting that physicians are, if necessary, selling their mothers’ souls to fund their work, even though just about all of them poor-mouth to the public hoping for yet more money. Medical egos come in only extra-large sizes. More than a few resent the intrusion of the CDC, an arm of the Department of Public Health, into an area they consider too rarified for mere bureaucrats to tread. There is grousing that the National Institutes of Health is sitting on a million dollars meant to fund private research, but that sum won’t be distributed until October.

On the other hand, despite budget bites into the CDC’s projects, a team of 75 epidemiologists has worked steadily on the problem from the moment it emerged in a recognizable form. Headed by Dr. James W Curran, this team—called the Kaposi’s Sarcoma Task Force—has tried to hack its way through the unfamiliar jungle of gay male pursuits, mostly sexual, hoping to discover which drug, which activity, which amoeba or virus or masked bacteria, possibly even which kind of chromosome code might hold what Dr. Curran likes to call “the smoking gun.” Or even guns, as it may prove to be.

Medical sleuths tend toward colorful metaphors—we have heard of “the tip of the iceberg” floating somewhere near the ominous “ticking time bomb” lying nervously by the gun that just went off. Especially in the present case, these detectives have too many clues, and if urban gay men at high risk seem nervous, physicians are far more so, most of all physicians who are themselves gay. They have watched, in the realm of the time bomb, a widening circle outside the specific definition of the outbreak of “life-threatening disease” laid down by the CDC. Dr. Curran has spoke of “tens of thousands” of gay men who may soon show early signs and symptoms of an equally baffling lymphadenopathy, that is, mysterious swelling of the glands where virus-battling lymph cells (lymphocytes) collect, somewhat like the swelling brought on by mumps. A number of studies have been conducted recently in New York and other cities to find out just how many gay men are showing up with lymph disorders that, physicians fear, may signal the beginnings of a later, more severe disorder of their immunity. And even though the CDC collects roughly one new case of immune-related disease a day, and even though the outbreak has proceeded at that rate since the day it was declared, still some doctors are afraid its velocity might suddenly speed up, that two or three or many more cases may begin to emerge a day. This hidden possibility, then, is the rest of the iceberg.

However, none of this may come to pass, because although about 400 gay men have so far been stricken, nobody really knows how many millions are alive now who remain healthy. Part of the great difficulty researchers face now is that, until this year, hardly any methodical clinical surveys have been done on what the effects—if any—were likely from all the varied things gay men can do to themselves. In the year since the CDC began their trek through this luxuriant jungle of a lifestyle, they have narrowed their search to a very few prime candidates for further investigation.

Essentially, their research was guided by a few obvious rules. They had to find a cause unique to gay men, something heterosexuals are not often found doing or using. They also had to bear in mind that men have been having sexual contact with other men since the dawn of time, so why has this happened only now? What, then, is new about the lifestyle?

The first apparent answer was the well-known use of nitrites—“poppers,” generally amyl and/or butyl nitrite—which began to be generally popular in the early 1970s. These chemicals seem far more likely than any other—marijuana, cocaine, alcohol, acid, and on—to answer all the criteria. As it happened, a long battle had been brewing in the Food and Drug Administration, which since 1968 has exercised control over amyl nitrite but not over a remarkably similar cousin, butyl. Because a firm could make and market butyl nitrite as “room odorizer,” in theory it fell legally under the purview of the Federal Trade Commission, which deals with relatively harmless substances such as aspirin. To date, despite intense lobbying on behalf of the gay community by gay physicians, the FDA has not moved to restrict to prescription status the use of butyl. But it has, through the recommendation of the Consumer Product Safety Commission, a branch of the FTC, begun a thorough laboratory investigation of all “volatile” or “alkyl” nitrites, of which amyl and butyl are only a few, to see whether these chemicals may cause cancer, induce immune deficiency or do anything else the public should be warned about. This study, written by Dr. C.D. Jackson of the National Toxicology Program labs in Jefferson, Arkansas, will take three years to perform and will, when finished, be the definitive statement on poppers. The NTP is a branch of the FDA.

But the word on poppers, although not so final, will be out much sooner. By late July or early August, results of the tests underway now at the National Cancer Institute in Bethesda, Maryland under the direction of Dr. James G. Goedert there, will be out. Dr. Goedert and others published a paper on Feb. 20, 1982 in The Lancet, a medical journal circulated in the U.S. and Britain, showing that preliminary tests linked the use of amyl nitrite with immune deficiency in several gay men in Washington, D.C. and New York. The current tests on 200 gay men in D.C. and New York are simply extensions of Dr. Goedert’s earlier trials and are designed to more fully explore what role amyl nitrite might play in the arrival of immune deficiency. Although critics have said the Lancet paper was premature and inconclusive, Dr. Goedert feels secure advising gay men to “cut back on nitrite drugs and reduce promiscuity,” as many physicians are now advising. Yet in terms of broad proof and evidence that can withstand attack, Dr. Goedert stands on very shaky ground. The only prior medical evidence to his own is a 1980 paper published in the Bollentino Societa Italiana Biologia Sperimentale (Naples) showing that nitrites can cause genetic mutation in a bacteria commonly used to test such action and warning American users of the chemicals that poppers may cause cancer. That paper, plus a Working Paper written by Dr. Jackson of the NTP in preparation for his own protocol of testing, remains the only existing medical literature on the effects of inhaling poppers.

On the other hand, several recent studies and surveys have drawn a total blank on the link to nitrites. A survey of 100 volunteer gay men in New York was begun in January of this year at St. Lukes-Roosevelt Hospital Center. Conducted by Drs. Hardy Kornfeld and Michael Lange, the tests were designed mainly to look for levels of cytomegalovirus (CMV), one of the herpes family of viruses deeply implicated in immune deficiency. The doctors found far higher general levels than they expected (and higher than in heterosexual “controls”). They also tried to find some correlates between drug use and CMV levels, especially a tie to nitrites. But, so far, they have not seen a tie.

Similarly, a massive epidemiologic “case/control study” begun last October by the CDC itself has drawn a blank. By comparing 50 victims of Kaposi’s sarcoma and opportunistic infections to 100 healthy gay male subjects as nearly identical to the 50 as possible, the CDC administered a questionnaire—exhausting hardly begins to describe it—to all 150 men They fed the results into their computers in Atlanta, hoping to find some outstanding difference between the sick and the well. By the end of June, they had found nothing, and with considerable embarrassment do not feel confident they can release the data they did uncover, because it doesn’t tell them anything they didn’t know when they began. Specifically, it does not tell them that the immune-deficient group of 50 used nitrites any more than the 100 healthy men. 

Still, the CDC is on the nitrite case with its own involved tests. Written by Dr. Tom Spira, a CDC immunologist, tests are being conducted now at two branches of a CDC subsidiary, the National Institute of Occupational Safety and Health at Cincinatti, Ohio and Morgantown, West Virginia. Laboratory mice are being dosed with butyl nitrite, they will be “sacrificed” at intervals to see what symptoms, if any, may be observed on their immune systems. The results of the work won’t be out until late this year, if then, but whatever is found will be highly conclusive. If the Federal government is going to move to suppress the free commercial sale of butyl nitrite, likely it will be CDC/NIOSH evidence that will support such a basis, should that evidence show a direct cause and effect. Dr. Spira has said “We don’t know what we’ll find. It could go either way.”

Another problem with poppers is that roughly 20 percent of the victims of the outbreak are either bisexual or heterosexual men and exclusively heterosexual women, almost all of whom have never used nitrites. Further, a recent report from five physicians at the University of Paris noted that neither of the two gay men being treated there for Kaposi’s sarcoma had ever used nitrites, nor had sex with Americans or even been to the U.S. So much for the “popper connection.”

Already, the path to poppers seems so well-beaten that the road seems virtually closed for repairs. Smart money is looking in other areas, specifically for some possible variant of the 17 different strains of CMV known to exist—or possibly for a deadly, mutated 18th strain never before isolated. This research is underway at CDC labs in Phoenix and is probably the most top-secret of all CDC work now. If indeed a new, deadly CMV strain is being passed, probably sexually, from man to man, what next? No effective vaccine has been developed for any of the herpes viruses, although two are deeply implicated in triggering cancers. One is Epstein-Barr virus, which definitely causes a form of cancer called Burkitt’s lymphoma in animals and may as well in humans. The other, deeply involved in the formation of Kaposi’s sarcoma and a known immunosuppresor, is CMV. But, like the herpes viruses, Type 1 and 2, herpes zoster and so though their entire family, no drug exists to stamp out the viruses. Only Acyclovir, recently developed and marketed by Burroughs Wellcome Co., seems to treat the symptoms of some herpes sores. It is all we have for now. Efforts to make vaccines have all come to grief.

However, as the Phoenix research continues, other work is going on in high secrecy to prove that CMV actually brings on the sarcomas that form in cells that line the walls of blood vessels. Even if more outbreak victims have died of a pneumonia caused by the protozoa Pneumocystis carinii, it is the cancer that send shock through the gay world, thanks to the great fear evoked simply by saying the awful word. Even if heart disease kills more Americans than cancer, cancer remains the great bugaboo. And for that very reason, scientists are determined to solve the CMV-KS riddle. One theory has it that, if this link can be proved, perhaps with new gene-splicing and hybridoma techniques an efficient vaccine could be made from the strain of CMV that will be isolated, then, presto! A vaccine against cancer. Strong men weep at the prospect of such glory.

One unhappy fact about CMV is that, especially among gay men now, it is extremely common and extremely easy to pass along, mostly through such fluids as semen, saliva, even sweat. Like its cousin herpes, it can lie dormant for months, then erupt again. It can be reactivated by other infections. It responds to mood swings and stress. It is highly infectious. And it is also highly immunosuppressive.

Thus the CDC has begun sniffing the trait of a pattern in the outbreak. A report in its June 18, 1982 MMWR yields some alarming statistics about a “cluster” of 19 cases in Los Angeles and Orange Counties, where it is expected the whole outbreak somehow began. According to CDC officials, data from eight surviving patients and seven of the 11 deceased points to a definite spread of some factor, possibly a virus, because these men all belonged to a club of people sexually active with each other. What the CDC report does not mention, but what is known informally, is that the club was organized around one main activity—fistfucking. Whether it is the fisting act itself that led to immune collapse is not known, but the CDC is now trying to further chart the outbreak to eight other cities and to several dozen people who live in them. Some of the first patients with KS who were reported by Dr. Alvin Friedman-Kein at New York University Medical Center admitted heavy involvement in fisting, and it was thought a summer ago that fisting may be the vital link to solving the problem. It may emerge prominently again, but privately investigators seem disinclined to indict the practice alone. Rather, they say, it may be that some allied factor, possibly a batch of some drug commonly taken by these men, really did the dirty work. Whatever took place and however it spread should be known fairly soon, perhaps by the end of the summer.

A further mode of contagion under scrutiny now is via needles. Many of the heterosexual victims of this outbreak are intravenous heavy drug users—heroin addicts, to be plain. One New York physician, Dr. Dan William, has said candidly that “they’re doing with needles what we’re doing with dick,” but his remarks weren’t meant to be taken with the severest gravity. Still, it’s a thought. And it might prove to be a key clue.

On the other hand, the fund of off-the-wall theories grows fatter daily. Some doctors have suggested that corticosteroid ointments applied to the anal or oral sores have brought down immune defenses. And despite the recnet publication of a massive, 10-year Federal study on the effects of somking marijuana, a report that found no significant immunosuppressive action in the weed, some physicians insist grass is the agent at work. Farther out are the politically oriented laymen who feel that pressure from the Far Right has induced a deadly stress on gay men—stress can influence immunity—who, they feel, are victims of a hideous conspiracy probably led by the government itself. Still others blame disco dancing, wearing too much black leather, or the blue dye in Levi’s 501 button-fly jeans.

With such a large vacuum to fill, there’s no dearth of ideas around to fill it. Fear fuels the imagination like nothing else.

In point of fact, Federal as well as state and local governments, on the whole, are doing what they can to help. Awareness is wider in the larger cities, slightly more than half of all outbreak cases are in New York alone, and the resources of that city have been impressively swung into play. But in San Francisco, Los Angeles, Houston, Atlanta, Miami, Phoenix and Denver, to mention just a few, doctors and gay men are forming constructive, useful partnerships to do what can be done. Often, the results are confused, but the intent is quite heartening.

As for the press, mainstream publications have told the story with remarkable restraint. Major pieces have appeared this year in the New York Times, New York Magazine, the Los Angeles Times, Wall Street Journal, on many major dailies through Associated Press and United Press International wires, even on the NBC-TV “Today” show. Those who complain that the outbreak has been ignored haven’t availed themselves of much of the media. The medical press finds itself inundated with reports from all over the U.S. and Europe, so far, no cases have been reported from Latin America (except Haiti), Japan, Australia, nor, in this “new” setting, Africa (although KS is traditionally seen in adolescent males in a band across Equatorial Africa).

Part of the mainstream press reluctance to get really gung-ho with the story, however, is that, finally, it is so shockingly ugly. Even though coverage has been wide and thorough, it has not been even wider because many editors are reluctant to print what would appear to be, on first reading, a flaming indictment of the gay lifestyle. It is a complex, difficult story—may gay men find understanding it more than they can bear. Its emotional overtones are black, terrifying. While some straight editors may not be wholly sympathetic to the cause of gay acceptance, they are usually not so vile that they actually enjoy telling their readers about the deaths of 200 gay men. These editors relish neither an assault from gay activists nor an uproar from Moral Majority opportunists. Only the most courageous and responsible news organizations have, so far, addressed the issue, even if soon others will follow with their own versions of the news.

Also, until recently, the outbreak seemed confined to a distinct subpopulation—gay males—so that many authorities felt it was up to the gay press to report and inform. Now that larger numbers of heterosexual victims have been reported, a more fearsome pressure builds, one that may have to be deflected by the gay community as the summer wears on. It is tempting—here come the Dark Ages!—for some straight people to see gays not only morally corrupt but leprous, too. “You can get the gay cancer from them,” they have said. Already, CDC officers have begun resisting right-wing Republican efforts in Congress and elsewhere to shorten Federal involvement in the problem. That fight could erupt into flames later this year. If it does, medical experts are ready with the facts, which show to those who care to examine them that the actual cuases of the outbreak are not known. And that simply being gay is no reason to be suspect. Being promiscuously gay, in fact, may contribute to risk for some men, but too many other factors, even genetic predisposition, must be calculated into the equation. The problem, to repeat, is so complex, so puzzling, that scientists liken it to discovering a new galaxy in space. It will take time, patience and terrific intelligence to unravel its mysteries. But these mysteries will, finally, be solved. If we do not know when, we do know everything that can be done is being done. It remains only for us to be strong in the shadow of threat, not to lose faith in ourselves and not, above all, to submit to guilt of any sort.

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