Anatomy of an Epidemic

Since it was first recognized in 1979 and until very recently, the incidence of the diseases grouped under the acronym AIDS (Acquired Immune Deficiency Syndrome) roughly doubled every six months, with about five cases being reported a day in the US (and about two a day in New York City). The overall national mortality rate has been 39 percent; half of all AIDS patients die before the end of the first year of the illness and nearly all before the end of the third year. According to a spokesman for the Centers for Disease Control (CDC), as of July 1, 1983, 1,737 people have been afflicted by the disease, and 678 of them have died.

The AIDS Epidemic presents a disturbing picture of the epidemiological, etiological, and clinical aspects of the disease as it is currently known, as well as discussion of a number of special problems, such as the protection of health workers, guidelines for blood donation, the direction of future AIDS research, and government funding for that research.¹ The book is a collection of reports on various aspects of the illness presented at a symposium held at Lenox Hill Hospital in New York City last April. It is edited by the senior member of the New York City Board of Health and a specialist in tropical medicine, and among the authors are such distinguished authorities as Dr. William H. Foege, director of the CDC; Dr. Donald P. Francis, chief coordinator, AIDS Laboratory Activities, Center for Infectious Diseases at the CDC; Dr. Donald S. Fredrickson, former director of the National Institute of Health; Dr. David J. Sencer, New York City commissioner of health and former director of the CDC; Dr. R. Ben Dawson, director, Blood Transfusion Services and Research Laboratories, University of Maryland School of Medicine and Hospital; and Dr. Robert A. Good, former president and scientific director of the Memorial Sloan-Kettering Cancer Center.

As Dr. Foege explains in his account of the history of the disease in the US, most of its victims thus far have been homosexual men under fifty—the median age is thirty-six—who live in large cities on the East and West coasts. According to the latest CDC figures, 47.9 percent of these are from New York (and 44.5 percent from New York City), 9.5 percent from San Francisco, and 6 percent from Los Angeles. Cases have occurred in thirty-eight states, the District of Columbia, and Puerto Rico; and there have been 121 cases in twenty-one other nations.

While the disease was first diagnosed in promiscuous homosexual men with previous histories of sexually transmitted diseases, it was subsequently discovered among other groups—intravenous drug abusers, hemophiliacs, and Haitians recently arrived in the US who apparently had no history of either drug abuse or homosexuality. These account for some 94 percent of the cases. Of the remainder, who are not in these “high-risk” groups, in half of the cases information pertaining to risk factors is unknown or incomplete; the rest are sex partners of AIDS patients (principally drug abusers), recipients of blood transfusions, and a number of cases with no ascertainable risk factors.

These statistics do not include reputed infant cases—there are about ten of these in New York, eight of them children of drug abusers—but according to the CDC’s Morbidity and Mortality Weekly Report (June 24, 1983), “infant cases are recorded separately because of the uncertainty in distinguishing their illnesses from previously described congenital immunodeficiency syndromes.”

The cause of AIDS has not been identified. For purposes of surveillance the CDC has defined it as the presence of a disease suggestive of underlying “cellular immunodeficiency.” The immune system, when normal, responds to infection by the operation of lymphocytes, a species of white blood cells. One class of these, B-lymphocytes, defends the body by creating antibodies to bacteria and viruses before they have invaded cells; another, T-lymphocytes, is the central defense of the “cellular” immune system: among other functions, T-lymphocytes detect cells already invaded by infection (e.g., malignant cells) and are responsible for transplant rejection. In AIDS, the cellular immune system fails. Although new information about the disease regularly emerges, one finding that has not been impugned is that AIDS patients usually have abnormally low ratios of the T-cells that increase the immune system’s efficacy (“helper cells”) to those T-cells that inhibit it (“suppressor cells”); occasionally there is a reversal of the ratios of helper to suppressor cells found in the normal body, and often a low absolute number of T-cells altogether.

The result is a persistent and, at least in full-blown cases, an apparently irreversible immunological imbalance which current chemotherapeutics and antibiotics cannot restore to normal; the patient becomes deeply vulnerable to “opportunistic” infections that would not have developed otherwise and are rarely seen except in patients whose immune systems have been disabled by genetic deficiency, chemotherapy, or age. Such infections include Pneumocystis carinii pneumonia, rare herpes viruses and others, even various “zoonoses,” parasites previously observed only in animals. AIDS patients are also prone to malignant disorders such as Kaposi’s sarcoma and Hodgkin’s disease. Even if one of these secondary diseases is treated successfully in an AIDS patient, because of the underlying disorder another usually follows until one occurs that cannot be treated, and the patient dies.

From what is currently known, airborne spread of the disease through upper respiratory tract secretions (as in colds), or transmission through fecal contamination of food (as in hepatitis A) or through insects (as in malaria), is unlikely. As Dr. Francis claims, many researchers believe that AIDS is an infectious disease caused by a virus and transmitted in a manner akin to that of hepatitis B, which many AIDS patients appear to have had and which often spreads sexually. The “viral agent” theorists base their claim on the facts that the syndrome has occurred in various groups without common patterns of life, and that a cluster of cases was found in Los Angeles, nine of whom had sex contacts in common. Since it is estimated that between 200,000 and 400,000 homosexuals live in the Los Angeles area, transmission of the disease by other means than sexual contact in this case would have been improbable.

Furthermore, as its occurrence among intravenous drug abusers and hemophiliacs would suggest, AIDS appears to be blood-borne, and spread either through sexual contact, or by administration of infectious blood or blood products, or by skin punctures for other reasons—Dr. Francis mentions several possible routes of this kind, including tattooing, ear piercing, etc. Some physicians contend that when the infectious agent of AIDS is transmitted through anal intercourse, the passive partners are at greater risk, since this form of intercourse often causes “traumatic” inflammation of tissue and small breaks in the mucosal lining of the rectum, thereby affording easy access to the bloodstream.

As with hepatitis B, again, individual vulnerability to AIDS appears to be variable. It may be that many hundreds or even thousands have been exposed to the infectious agents of AIDS and yet developed only a milder, perhaps asymptomatic, form of the illness. Confirmed cases of AIDS would then correspond to that small number of hepatitis B patients who develop severe and chronic, sometimes mortal, cases. Some physicians have speculated that the generalized lymphadenopathy (lymph-node swelling) widely observed among urban homosexuals may, in some cases, be a mild form of AIDS; others say that it may be a precursor or (like night sweats and unexplained weight loss) just an early symptom.

But what is the infectious agent of AIDS? The viral theorists argue that the disease, which is believed to have an average incubation period of twelve months or more, may derive from a common virus, a new virus in combination with a common one, or a new one altogether. None, however, has been identified, although candidates have included CMV (cytomegalovirus, which is relatively common) and the human T-cell leukemia virus, which appears to be transmitted from person to person and to alter T-cell function from that of helper to suppressor.

“The pursuit of an infectious agent for AIDS,” Dr. Francis writes, “has been hampered by a disbelief that AIDS was (is) an infectious disease.” At first, he notes, it was thought that the volatile nitrates or “poppers” sniffed by many homosexuals to enhance orgasm, or the presumed immunosuppressive effects of sperm introduced into the body either orally or through anal intercourse, might be the cause. (One doctor mentioned as a possible factor the immuno-suppressive steroids used by some body builders.)

These hypotheses have gradually been abandoned, but a number of doctors—none of them represented in Cahill’s volume—have persisted in proposing an etiology for AIDS according to which it is not infectious. According to the most prominent of these views, the “immune overload” theory, the disease results from repeated infections by viruses such as CMV, bacteria, and parasites common not only among malnourished Haitians, drug abusers, and others, perhaps in conjunction with other factors such as the antibiotic therapies used in treating these diseases, or poor diet and sanitation. These factors cause a “breakdown” of the immune system. On this view, although the ways in which a person may become immunologically compromised may be varied, the resulting syndrome may be identical.

Immune overload theorists contend that the explosion of homosexual promiscuity in the late Sixties and during the Seventies produced extraordinarily high levels of relatively common viruses and predisposed homosexuals to immune breakdown. Supporters of this view argue that no new virus causing AIDS has been found (as the viral theory would imply), either in bodily fluids and tissues of AIDS patients or in laboratory chimpanzees, dogs, mice, and marmosets injected with these samples. They also note that the disease has remained confined to a relatively narrow segment of the population (and even to a segment of homosexuals). And the high risks that viral theorists assign to the passive partners in anal intercourse could also apply under the immune overload theory.

Viral agent theorists may respond to these claims that while the evidence does not conclusively confirm either view, their research has not shown that all AIDS patients had histories of repeated infections before the onset of the disease; nor need they deny that factors such as drug use, previous infections, poor nutrition, and so on may play secondary or predisposing roles. They point out that discovering a viral agent can take years.

Dr. Donald Fredrickson decries “the generation of suspicion or fear that is not based on adequate information,” and offers the counsel that “the official pronouncements and the coverage by the media require unusual sensitivity in the instance of this disease.” By these criteria, however, much of the government and press reception of AIDS has been inexcusable. Members of the press exaggerated the scope and infectiousness of the illness: they spoke, to cite a characteristic example, of a “gay plague” “spreading like wildfire.”² Even as late as last June, the director of the Office of Gay and Lesbian Health of the New York City Health Department felt it necessary to remind us that “fewer than one in 1,000 gay men actually have the disease” and that “many are not even at increased risk.”³

Members of the press blew up a report in the Journal of the American Medical Association that prolonged routine contact, as between a parent and its child, may spread the disease.⁴ They spoke of “cures,” whereas finding a means of restoring normal functioning of the immune system in a patient with immunological deficiency is a problem that has eluded researchers for many years (even if investigators have reported limited success with interferon and plasmapheresis in some AIDS patients);⁵ and a vaccine, of course, awaits the identification of the infectious agent.

Time magazine reported that “a majority of the experts believe that what was once known as the ‘gay plague’ will enter the general population” and that “the most widely feared route into the general public is through blood transfusions.”⁶ This was irresponsible. What is striking is that the illness has not spread to the general public, and while it is thought by many physicians that AIDS is blood-borne, blood transfusions from volunteers are not believed to be a significant route of transmission, especially when precautionary measures are applied to donated blood. Only a handful of AIDS cases have been identified as “possible transfusion-associated cases” among the some 10 million blood transfusions in the US during the last three years. Now that evidence disconfirming the views they were responsible for broadcasting have come to light, members of the press have published articles about AIDS “hysteria” and “panic.”

Various complaints have been advanced about the government’s response to AIDS. It has been claimed that the reporting and monitoring of the disease have been insufficient, primarily because in most states the government does not require doctors to report cases. Only in California (and as of July 9, in New York, for at least sixty days) is reporting required. But even in these states, it is said, patients may be refusing diagnosis and doctors may be failing to report patients in order to protect their privacy. Others argue that government research has been badly informed about homosexual sexual practices and patterns of life.

The main complaint—eloquently articulated in Cahill’s book by Representative Theodore Weiss of New York—is that research funds for AIDS have been insufficient. It might be claimed that the incidence of other diseases, such as Alzheimer’s disease, which according to Dr. Lewis Thomas now “affects more than 500,000 people over the age of fifty” and “is responsible for most of the beds in the country’s nursing homes,”⁷ should take priority over AIDS research, and that amounts already appropriated to AIDS are sufficient. But this is questionable since AIDS is widely thought to be an infectious disease, possibly transmitted by an as yet unidentified virus, and has arguably reached epidemic proportions.

While local officials in New York and California have allocated funds for research (however belatedly in the eyes of some observers), the government has responded torpidly. The secretary of health and human services, Margaret Heckler, has called AIDS the nation’s “number one priority” in health research. But the assistant secretary of health has stated that public health service agencies’ estimated expenditures on AIDS are no more than $14.5 million in fiscal year 1983 and $17.7 million in fiscal year 1984—sums that present a contrasting impression. So does the bill signed by President Reagan on July 13 to “create a $30 million fund to help the Department of Health and Human Services respond to health emergencies,” such as AIDS.⁸ The amount may indeed be greater than what was spent on the Legionnaire’s disease and the toxic shock syndrome investigations combined, investigations that were conducted out of the operating budget of the CDC and received no additional help from the government. But some prominent public health officials—such as the health commissioner of New York—have claimed that the money is not in hand yet and that much of it is not intended specifically for AIDS but for basic immunological research.

The appropriations committees of the House and Senate have sought to provide more money for AIDS research, but the Reagan administration has opposed this, arguing that adequate research funds can be diverted from existing health programs. Some spokesmen for homosexual groups have claimed that bigotry lies behind the government’s alleged neglect of AIDS, as they claim bigotry influenced government investigations of sickle-cell anemia, a disease principally affecting blacks. Such assertions are nicely balanced by Jerry Falwell’s recent claim that the Reagan administration is doing nothing to stem the “plague” out of deference to homosexual voters and lobbies.⁹

A more plausible view, in part suggested by Dr. Fredrickson, is that the mechanics of research grant operations are habitually sluggish, and that the administration is not so much bigoted against homosexuals in particular as consistent in failing to meet the health care needs and costs of groups that are poor, unpopular, or otherwise “disadvantaged.” That the government is capable of moving swiftly was amply confirmed when, a few years ago, $129 million was appropriated (though not all spent) for grants to states to conduct programs and purchase vaccines in connection with the “swine flu” scare. Responding to the lack of government funds, the AIDS Medical Foundation was set up in May in order to augment funding of AIDS research. A new journal, AIDS Research, is also planned, to be edited by Dr. Joseph Sonnabend, the chief medical officer of the foundation and the main proponent of the immune overload theory.

A number of contributors to The AIDS Epidemic write without further specification of the “life styles” of the “gay community” as a predisposing factor or “amplifier” of the AIDS outbreak. A few also praise the “gay community” for its part in alerting others to the dangers of the disease. Such language encourages the misleading image of a homogeneous social group devoted to specific social and political ideals and marked by a single pattern of life. But a reading of the homosexual press in recent months suggests that homosexual men vary considerably in their responses to AIDS and to the moral questions concerning sex practices it inevitably raises. It seems there are either many “gay communities” or none at all.

It is true that the “straight” press has published much fatuous comment on AIDS, including the conservative columnist Patrick Buchanan’s indecent remark that the “poor” homosexuals “have declared war upon nature, and now nature is exacting an awful retribution,”¹⁰ and The New Republic’s intemperate assertion, in its August 4 issue, that AIDS is a “metaphor” that “has come to symbolize…the identity between contagion and a kind of desire.” But some homosexual writers show hysteria and ignorance about the disease as well. Some homosexual newspapers suggested that the AIDS epidemic was a consequence, intended or not, of biological warfare. New York Native, for example, recently quoted a 1977 Boston Globe article purporting to connect the CIA with an outbreak of the African swine fever virus—a now discarded candidate for the infectious agent of AIDS—in Cuba in 1971. The Globe had mentioned “a US intelligence source” who said in an interview “that he was given the virus in a sealed, unmarked container at an Army base and CIA training ground in the Panama Canal Zone with instructions to turn it over to the anti-Castro group,” which presumably brought it to Cuba, where “sick pigs” were subsequently found.¹¹

Other writers spoke darkly of genocide orchestrated by “homophobics.” Still others have endorsed the obscure sociological speculation that the cause of AIDS is “homophobia,” since discrimination against homosexuals “forces” them into “the bathhouse circuit” where they contract the disease.¹² Some have argued that the medical advice on the treatment and avoidance of AIDS, which usually includes the recommendation to reduce the number of sex partners, is morality masquerading as medical opinion, and if not immoral, a “judgmental” affront to the “gay rights” movement.

“Gays are once again allowing the medical profession to define, restrict, pathologize us,” claims one writer; if homosexuals obey the advice of doctors, they are renouncing “the power to determine our own identity” and participating in a “communal betrayal of gargantuan proportions” of “gay liberation,” which maintains a “sexual brotherhood of promiscuity as the foundation of our identity.”¹³ Many other homosexual writers seem sympathetic to the suggestion that, despite some obvious considerations to the contrary, every orgasm achieved through homosexual sex acts is a political achievement. None of them succeeds in explaining how the existence of certain civil rights is threatened by accepting the counsel to cease voluntarily and temporarily sex practices that may transmit disease.

Reading the recent medical literature I have not found any claims that promiscuity itself “causes” AIDS, as suggested by the novelist John Rechy, who says that “sexual acts are being condemned as producing AIDS—acts which have occurred since before the time of Christ.”¹⁴ But it is also difficult to find evidence that promiscuity did not predispose certain men to AIDS and did not have an effect in amplifying its incidence. Dr. Foege mentions an early CDC case control study which sought to identify those most at risk of developing AIDS. “The most important variable,” he writes, “was that the AIDS patients had more male sexual partners than the controls, an average of 60 per year for patients compared with 25 per year for controls.”

In recent years, for many promiscuous homosexual men, sex has included frequent encounters in bath-houses and back rooms of bars with anonymous partners, group sex, and fist fornication accompanied by amyl or butyl nitrates and anaesthetics to mask rectal pain. Dr. Francis, who is in charge of the CDC’s research on AIDS, says that infections of all types are common in AIDS patients, “especially the homosexual men. Almost all have shown evidence of infection with Epstein-Barr (EB) virus, the cause of mononucleosis, CMV, herpes virus I and II, hepatitis B virus, and syphilis.” Other infections, he reports, are also common, especially the enteric infections making up the “gay bowel syndrome,” usually contracted by oral ingestion of fecal matter, such as amebiasis, giardiasis, shigellosis, and pinworms. Dr. Francis claims that “the amplifier of the outbreak of AIDS appears to be the homosexual community—specifically those men who have sex with many other men in bathhouse-type settings.” He adds that

commercialized homosexual sex is a new phenomenon and is primarily concentrated in the large coastal cities that reported AIDS. These commercial establishments allow easy access to sexual partners. Thus many men can have sex with men who in turn have had sex with many other men. This is an ideal setting for disease transmission, and the introduction of a new infectious agent into this community would have predictable effects.

During the past decade, as some of the recent writings by homosexuals make clear, a small but influential group of homosexuals developed a way of life that encouraged this kind of satyriasis. Some men felt hindered in their normal growth as homosexuals unless they adopted it for a while; some participated in a dreary sexual conformism, regularly meeting in bars to perform rigidly defined and routinized sex moves in the theatrical costume of police or ranch wear.

The AIDS phenomenon has induced some homosexuals to question this image of masculinity, and that reexamination has produced some righteous reflections on sex and politics quite different from those of the radicals mentioned earlier. Some have become “twiceborn,” despising their former promiscuous selves and earning the accusation of self-hatred from former friends. Sometimes they blame the “sexual revolution” for AIDS, or call the homosexual “rights” movement a failure on the ground that it “caused” AIDS. Some among them, still solicitous of homosexual rights, complain that the AIDS outbreak demonstrates that the rights movement degenerated into a preoccupation with sex, which in turn prepared the rise of big homosexual business, particularly commercial sex, oblivious to human welfare and “liberation”—and health.

In their book, Berkowitz and Callen, exponents of the immune overload theory, urge a sensible restriction of sex among currently promiscuous homosexual men, as their theory would recommend. But they end with the suggestion that “all this great sex we’ve been having for the last decade has siphoned off our collective anger which might otherwise have been translated into social and political action.”

Whatever the outcome of these moral debates, the situation of AIDS victims is extremely difficult: they are afraid of isolation and abandonment, and according to some reports they have occasionally been deserted by friends, families, landlords, and employers. It is small consolation to them to be assured that their case histories may contribute to future explanations or treatments of cancer. “It is tragic and almost unbelievable to learn that occasionally health-care personnel, including physicians and nurses, have refused to care for AIDS patients,” says Dr. Sydney Finegold in the Cahill volume, and indeed there have been reports of emergency ward nurses, intravenous teams, pathologists, and others treating patients badly both before and after death. The New York City health commissioner, Dr. Sencer, told me that although such behavior presents “a problem,” these are relatively isolated cases: “You’ll hear of patients being refused food, but when you really look into it, this really didn’t happen. Things were misunderstood, or people were changing shifts.”

It is also unclear whether apprehension on the part of health-care personnel is justified. While there appear to be cases of AIDS among health-care workers who do not fit into any of the high-risk groups, they have been strikingly rare.¹⁵ Dr. Sencer said that “there are health workers who have AIDS, but most of them have been people with one of the other risk factors. For example; we’ve had ten deaths of health-care workers in New York City, but all of them have been assigned to the risk group of either homosexuals or drug abusers.”

AIDS patients face huge costs. “The duration of an AIDS hospital stay is usually measured in months,” says Dr. Cahill, “and hospital bills in excess of $100,000 occur with ever-increasing frequency.” Representative Weiss notes that “many have lost their insurance coverage because their debilitating condition leaves them unable to work. Many have exhausted their insurance coverage because of the catastrophic nature of the illness. Most do not qualify for public assistance.” And a columnist in the homosexual press has added that

the claim that Medicare disability is available to AIDS persons is largely misleading; no major news medium has bothered to report that the Reagan administration is retaining the two-year waiting period to establish eligibility, and the devastating nature of this illness means that 80 percent of its victims will not be alive to draw their first check.¹⁶

If AIDS continues on its present course, should restrictive measures be placed on homosexual bathhouses and back rooms? Some, both in the homosexual press and without, have argued for this, claiming that as in the case of other public health hazards, such as cigarettes and pollution, some compromise between civil liberties and public health will have to be struck, its exact formula contingent on the severity of the problem. But, at least in New York City, health officials do not think this is justified. Dr. Sencer told me:

I can see no reason why we would close the bathhouses. I don’t think that changing the habitat is necessarily going to change the behavior. There are other places people can go and have indiscriminate sexual relations if they want to. To try to legislate changes in life styles has never been effective. Public education through the routes of organized groups who are at risk is the most important thing.

Fortunately, just this appears to have occurred. Homosexual groups organized to protest the inadequacy of federal action on AIDS, and when swift action by the government did not occur, they themselves bore the cost of providing public health education. Such groups as the Gay Men’s Health Crisis have raised funds to provide care for AIDS patients, to publish newsletters, and to create telephone services to provide advice and information about AIDS and related matters, such as blood donation. And there is some anecdotal evidence that they, at least in part, have succeeded in conveying the need for sexual habits better suited to present conditions. Many homosexuals seem to have modified their previous patterns of sexual behavior. Some have turned to monogamy, others to closed circles of partners. Still others have embarked on what one writer calls “immunological Lent.”¹⁷ Advertisements can be found throughout the homosexual press for commercial “phone sex” intended to alleviate in a “healthy” way the melancholic condition of celibacy. And a wide audience is likely to be found for useful guides such as Dr. Kassler’s.

Perhaps most encouraging of all, cases of syphilis and gonorrhea seem to have declined in recent months, largely, it is thought, because of modified sexual activity. AIDS cases have continued to increase, but they have not doubled in the past six months, as was expected; the rate of increase appears to be leveling off in both the city and the nation, according to the CDC. Dr. Sencer attributes this apparent decline to “perhaps three things working together: one is a change in life style in the gay population; another may be the fact that we are developing immunity through subclinical cases; and AIDS may not be as infectious as we had thought it was in the beginning.”

It is indeed too early to tell whether changes in sexual practices among homosexuals have altered the course of the AIDS epidemic. After all, California magazine reports that a recent survey indicated that many homosexuals were “poorly informed” about the disease and that while some were modifying previous sexual habits, “an alarming number of men were still engaging in high-risk behavior.”¹⁸ And two pages later, the magazine provides an example of the ignorance that persists about the disease. An organizer of the Lesbian/Gay Freedom Day parade in San Francisco on June 26 apparently believes that the sexual transmissibility of AIDS is only a theory used to attack the gay life style. Presumably referring to bathhouses and homosexual bars, he states that “institutions that have fought against sexual repression for years are being attacked under the guise of medical strategy.” “I feel,” he continues, “that what we are being advised to do involves all of the things I became gay to get away from…. So we have a disease for which supposedly the cure is to go back to all the styles that were preached at us in the first place. It will take a lot more evidence before I’m about to do that.”