AIDS has become one of the most discussed subjects in the US, yet some of its most important characteristics are not understood. From the beginning it was thought of as a homosexual’s disease, created by “promiscuity.” When a virus, HTLV-3, was found in the blood of most persons with AIDS, it was held that the virus was “the cause of AIDS.” It was also held to be the cause of the milder form of the illness known as AIDS-related complex (ARC)—a group of symptoms including swollen lymph glands in several parts of the body, night sweating, substantial weight loss, and recurrent diarrhea. All along, AIDS has been thought of as a sexually transmitted or venereal disease that is generally fatal. All of these claims, which have contributed greatly to fear of the disease, are false or misleading.
The virus is a strain of “human T-lymphotropic virus” (HTLV), which has a predilection or affinity for human T-cells—a kind of white blood cell or lymphocyte that circulates in the blood and in some bodily secretions like sperm. T-cells (named for their close association with the thymus gland, which determines their specific functions) help the immune system to limit the increase of microbes that live in the body and to fight off infectious agents. They can do so because they have acquired the capacity to recognize differences between foreign cells and those native to the body, and are able, in encountering a foreign cell, to release chemical messengers that alert other parts of the immune system.1
The “AIDS virus” cannot multiply unless it inhabits T-cells. Once it does so, it can incorporate itself into the T-cell’s genetic machinery and then subvert it by instructing the cell to reproduce it rather than the T-cells. It is able to replicate itself in this way at a very quick speed—at a rate between one hundred and one thousand times the rate of uninfected cells. As more and more of the body’s T-cells are destroyed in this way, the immune system as a whole begins to collapse. The “AIDS virus” is called “HTLV-3” because it is a mutant of another human T-cell lymphotropic virus, HTLV-1, which causes leukemia by transforming T-cells and causing them to multiply excessively. HTLV-3 probably comes from central Africa and resembles a virus that is found in Old World monkeys. It is thought by some that Haitians working in Zaire in the 1960s and 1970s brought it to Haiti, where it was picked up by vacationing American homosexuals.
There is good reason to suppose that HTLV-3 is a sine qua non of AIDS. It has been found in nearly all AIDS and ARC patients but in fewer than 1 percent of those who do not have AIDS and who are not likely to contract it. Scientists at Harvard University have succeeded in infecting monkeys with an illness very similar to AIDS by injecting a close relative of the virus into them.
Infection by HTLV-3 must be distinguished from AIDS, however, and cannot be said without qualification to be “the cause” of AIDS. Surveys of the prevalence of the virus—estimated by researchers at the Centers for Disease Control (CDC) to have infected some 750,000 to 1.5 million people in the US—show that only about 1 or 2 percent of those infected by it have AIDS, by now some 15,000 people, while perhaps ten times that number have the milder symptoms of ARC.2 AIDS is not a disease itself but the most advanced and serious result of infection. It is a group of symptoms that suggests a collapse of the immune system—a collapse that is often fatal because the body no longer resists many diseases that it would otherwise fend off, such as pneumonia or cancer, including the usually rare cancer called Kaposi’s sarcoma. (By the time such diseases become fatal, the incidence of the HTLV-3 virus in the body may have declined because the vast majority of T-cells the virus has infected have been weakened or destroyed by it.)
Just as only a small percentage of those infected by hepatitis B come down with cirrhosis, so what is often miscalled AIDS—simple infection by HTLV-3—is almost never fatal, as Dr. Jacques Leibowitch says in his often useful book, A Strange Virus of Unknown Origin. He writes: “Possibly less than ten percent of those carrying the virus will ever experience any symptoms at all.” In fact, infection by the virus alone is very likely insufficient to cause AIDS; some other “cause” is probably necessary for development of AIDS or ARC. For HTLV-3 to do damage, it must replicate itself inside T-cells when they are active or stimulated; since T-cells are used to fight off infections, a plausible hypothesis is that someone whose body is already fighting off serious infections is more likely to develop a bad case of HTLV-3 infection than someone who is not.
The suggestion that AIDS develops chiefly in those whose immune systems are already weak or defective (whether through previous illness, poor environment, or congenital deficiency) seems to explain why the disease has struck: children, hemophiliacs, habitual intravenous drug users, Africans, and Haitians, who have frequent and viral infections such as hookworm, malaria, sleeping sickness, and schistosomiasis. Homosexual men, who have always represented the majority of cases in the United States of those with AIDS, were also frequently infected by sexually transmitted diseases like syphihs, gonorrhea, herpes, and by parasites like amebiasis; some of them were nearly constantly infected by one or more such diseases. In addition, many of these same men used drugs such as amphetamines and barbiturates, LSD, heroin, and cocaine, sometimes intravenously. Many of them also used amyl nitrites or “poppers,” which cause intoxication and prolong sensations of orgasm; a recent study at the National Jewish Center for Immunology and Respiratory Medicine determined that use of poppers can impair the ability of the body to fight off infections, and that when used in anal intercourse can dilate the blood vessels of the rectum and improve absorption of the virus into the body.
Many of the homosexuals with AIDS were “promiscuous”; but it was not the promiscuity per se that “caused” AIDS. It was the fact that it made possible a greater exposure to diseases that in turn helped to set the stage for AIDS. The association of AIDS with promiscuous (and, to judge from many press reports, white and middle-class) homosexuals has had to give way to a different picture: it is estimated that fully 40 percent of American cases are black and Hispanic, many of them heterosexual. And because the CDC has classified homosexuals who take intravenous drugs as homosexual rather than putting them in the category of intravenous drug user, the number of cases contracted through needles has been insufficiently recognized. In some places, especially poor sections of large cities, IV drug users account for almost as large a proportion of AIDS cases as homosexuals.
It may be inappropriate to call HTLV-3 infection a “venereal disease” like gonorrhea. It seems to be more an infection of the blood, communicated by the mixing of infected blood with other blood, or of blood with body secretions such as sperm that contain large numbers of infected lymphocytes. For infection to occur, as Dr. Leibowitch notes, it appears that there must be contact between the infected lymphocytes of the donor and the lymphocytes of the recipient.3 As such, the virus is communicated most efficiently by direct transfusion into the bloodstream of a healthy person. This is why it can occur in blood transfusions or when tiny amounts of blood with HTLV-3 infect intravenous drug users whose needles have been previously used by those carrying the virus. Although the infection is not best interpreted as a sex disease; the virus can be spread when semen mixes with blood. For example, when ejaculated sperm is deposited on rectal tissue that has been bruised or broken by anal intercourse, a kind of transfusion of the virus directly into the bloodstream of the recipient partner occurs.
If AIDS is to be passed on in vaginal intercourse, mixing of blood or contact between sperm and blood must take place, and this is unusual. Thus far almost no evidence exists of female to male transmissions.4 Since HTLV-3 has not been found in vaginal excretions, for such transmission to occur would require either that the female were menstruating or that a tear occurred both in the vaginal wall and the penis so that blood could be passed. Dr. Stephen Schultz, assistant commissioner of health in New York City, told me that there is little reason to suppose that this happens with any appreciable frequency; the fear that prostitutes are “spreading AIDS” is therefore unproven, according to him, although some prostitutes carry HTLV-3 because they have many sex partners and are sometimes IV drug abusers. And male prostitutes may be spreading the virus on a much larger scale.
On the other hand, Schultz said that male to female transmission is “established” and is largely responsible for the growing number of children with AIDS. Such infection could occur during sexual intercourse when women are menstruating or through a tear in the vaginal wall, or through a tear in the rectal mucous membrane during anal intercourse. Although most countries in central Africa have chosen not to issue reports about the number of AIDS cases in them, and some have denied that AIDS exists within their borders out of fear of losing tourists and foreign currency, it is estimated by the director of the CDC that many millions of Africans are infected by HTLV-3 and that AIDS occurs there among men and women in nearly equal proportions. More than a year ago, a report in The Lancet (July 14, 1984) claimed that the incidence of AIDS in Kinshasa, Zaire, was very high, indeed higher than that of San Francisco or New York. That much of African AIDS is contracted by male to female transmission may be partly explained by a remark in a pamphlet on AIDS published by the New York State Department of Health which claims that anal intercourse occurs more frequently in heterosexual couples in Africa than in the United States. But it is also likely that the reuse of disposable needles is responsible for some African cases of AIDS. Cultural practices such as ritual scarification and clitoridectomy may also play a part in contributing to the spread of AIDS by causing scarring and bleading.
In any event, a heterosexual pandemic has not occurred in the United States. The proportion of those who are said to have contracted the infection through vaginal intercourse here has remained extremely small, since 1981 around 1 or 2 percent (by new some two hundred to three hundred cases) of the total number of AIDS cases; since the total number of cases has doubled in nearly each of the past few years, heterosexual cases have therefore also doubled. But according to the Center for Disease Control, the mean time it takes for the illness to manifest itself after infection is variable, sometimes as short as a year (as in the case of many children) and in other cases as long as six or more years.5 For homosexual cases, however, the average is approximately three years; and it is believed that heterosexual drug users in the US were infected by HTLV-3 around 1978, as long ago as the first homosexual cases. Therefore “there has been time enough,” in the words of the New Scientist last September, “for many more people outside the recognized risk groups to have contracted the disease during heterosexual intercourse. But they have not.”
There is much to be frightened about in AIDS: the acute condition generally causes death—although according to the CDC some 15 percent of those diagnosed with AIDS in 1981 remain alive. The virus can also apparently travel through the barrier in the body between the blood and the nervous system and settle in the brain, causing meningitis, dementia, and other forms of neurological damage. Because of this and other features of the virus—discussed in the December 12, 1985 issue of The New England Journal of Medicine—some researchers have argued that it should be classified as one of the lentiviruses, which cause brain disorders in sheep and other animals. Such damage cannot be treated by most drugs, which do not enter the nervous system if given intravenously.
Despite some premature announcements by French researchers, there will not likely be a cure for AIDS soon and a vaccine will be very hard to make. This is because the virus changes its structure at a rate that is perhaps a hundred times faster than that of the influenza virus, for whose changing strains no successful vaccine has been developed. On the other hand, precisely because the virus is so highly specialized in attaching itself to a kind of white blood cell, it is possible that some part of the surface is the same in all varieties of HTLV-3. It is frightening, too, to read that in addition to some 15,000 cases in the US, growing numbers are occurring in South America and Africa, and that Europe is beginning to follow the pattern of growth seen here some years ago. According to the CDC, there is now an average of twenty cases a week there, with the greatest increases in France. West Germany, and Great Britain. But as in the US it has to a remarkable degree been confined thus far to homosexuals, drug abusers, people who have had blood transfusions, and other “high risk” groups; the CDC has said that in a study of one thousand AIDS cases in Europe, 92 percent belonged to these groups.
Since infection by HTLV-3 spreads through the blood and sperm cells, it is extremely difficult to catch, except by the kind of contacts I have just described. The tests that have been used so far do not locate the HTLV-3 virus itself but instead show whether the antibodies that the immune system forms against it are present. In a recent report, the CDC said that of a sample of 1,750 health-care employees working with AIDS patients (and therefore likely to be exposed to their blood or blood products) only twenty-six had positive tests for presence of HTLV-3 antibody in their blood. All but three of these were probably exposed to the virus through anal intercourse, blood transfusion, or intravenous drug use. Of the remaining three, the CDC has not been able to determine whether such additional risk factors were not present and says they are only “probably” cases of occupational transmission of HTLV-3 infection.6 Only one case of such transmission in a health-care worker has been confirmed, that of an English nurse who stuck her hand on a syringe containing fresh blood from the artery of an AIDS patient.7
Children with AIDS do not, it appears, give the disease to their siblings or parents. According to the New York Academy of Sciences report on AIDS, only a few hemophiliacs—less than one in three hundred—who receive contaminated blood in transfusions of blood products have contracted AIDS. (Since March of last year, when the test was licensed, virtually all blood used for transfusions in the US has been screened for the virus.) Some people continue to show negative results for the presence of the antibody even though they had had sexual intercourse with AIDS patients for over a year. And it has become a familiar conclusion of health officials that the disease is not spread by butchers, cooks, caterers, waiters, bartenders, barbers, hairdressers, manicurists, masseurs, or by swimming pools, locker rooms, telephones, handling money, handshakes, “social” kisses, and blood-sucking insects.
The US Public Health Service (PHS) issued in November of last year a set of recommendations for preventing transmission of HTLV-3. It urged that there is no need to especially restrict the activities of most people with AIDS, including health-care workers and food handlers, unless they failed to observe already established standards of personal hygiene. “Instruments,” it said, “that are intended to penetrate the skin (e.g., tattooing and acupuncture needles, ear piercing devices) should be used once and disposed of or be thoroughly cleaned and sterilized after each use” according to procedures used in health-care institutions.8
This evidence thus suggests that AIDS is rarely contagious. It is difficult to be exposed to it, and exposure is not necessarily followed by infection, let alone AIDS. Most people who are infected by HTLV-3 show no symptoms; others suffer a flulike acute illness that goes away (as did that of the English nurse). Others seem to develop antibodies to the virus that go away without their becoming ill. In a case reported in Annals of Internal Medicine in October, a woman is said to have been infected by the virus through sex relations with her husband; after finding out that the virus had infected her, the couple began to use condoms; the antibodies soon disappeared from her blood. According to Dr. Schultz, even those with ARC have often gotten over their infections; in some cases, he said, this might have to do with avoidance of more infections (including HTLV-3) by, say, ceasing to use infected needles:
The Economist of November 16, 1985 announced that a scientist in Cambridge University, Dr. Abraham Karpas, has shown that antibodies to HTLV-3 created by people infected by the virus but free of symptoms can kill the virus—not when it has infected T-cells, but when it has entered the blood. They conclude that “immunity to AIDS is attainable. The fact that so many infected people (around 90 percent) remain free of symptoms suggests that there is some form of immune control of the virus. Now there is direct evidence that this is so.”
This suggests that only a very small group of people are “at risk” of contracting AIDS. It has been noted that large percentages of homosexual men interviewed at health clinics test positive for the antibody to HTLV-3; to infer that “homosexuals” are a “high-risk group” is nevertheless unwise. Homosexuals differ: some are married men who rarely go to homosexual bars; others have one-night stands and go home to their wives; others know very few other homosexuals and would never describe themselves as homosexual. If the sample of homosexuals were taken not at health clinics but in some other way, the estimate might be radically different. Homosexual men who are the passive partners in anal intercourse that terminates in ejaculation by partners who do not use condoms are putting themselves at risk. So are those who take drugs intravenously and reuse the needles of others who may be infected with HTLV-3. Women who practice unprotected sex with male IV drug users are also at risk for contracting HTLV-3 or passing it to their children in the prenatal period. Almost everyone else would not seem to be at any appreciable risk.
Although much of this information has been reported in the press, it hardly seems to have sunk in. One might say that ignorance has been making considerable progress. As late as September a CBS poll showed that 47 percent of those polled thought it was possible to catch AIDS from drinking from a glass used by someone with AIDS; 32 percent thought it possible to contract it from kissing and 28 percent from a toilet seat. More than one in ten thought AIDS could be contracted from working in the same office as someone with it, or from the touch or an infected person. Late in October, a Harris poll found that more than 50 percent of those asked believed that one could get AIDS from living in the same house as someone with it or from “casual contact”; one third of the respondents said that one can catch it from “going to a party where someone with AIDS is.”
We have seen parents demanding not only that children with AIDS be excluded from school, but that even healthy children who live with other children with AIDS be excluded as well. Delta Airlines banned AIDS patients from flying on the carrier, apparently because it felt that AIDS patients posed a danger to other passengers by using the same toilet seats; an actor felt he had to announce to a gossip columnist that he did not have AIDS; an actress refused to have kissing scenes with male actors who had not passed an AIDS blood test. The Screen Actors Guild has called open-mouthed kissing a possible hazard to actors and wants actors to be notified of kissing scenes in advance. Prospective jurors have asked to be dismissed from a trial in which the defendant had the disease, and some Protestants have expressed fears that drinking from a communion cup would spread the illness. This autumn, a doctor at a large New York City hospital told me he still has to browbeat nurses and hospital attendants into giving proper care to AIDS patients.
(Such ignorance is not confined to the US. In the Soviet Union, where homosexuality is a legal offense for which the courts may order compulsory psychiatric treatment, the chief of a Black Sea sanitarium has said that AIDS might result from “genetic mutations” caused by “mixed marriages.”)
Any serious disease that is contagious, however weakly, is likely to cause fear and demands for precise and certain knowledge about how it spreads—demands that are usually impossible to fulfill. But as I shall illustrate, the officials, experts, and groups concerned with AIDS have reported and interpreted information about the disease in vastly different ways. Some of these sources of information, moreover, have accused the others of exaggerating the danger posed by the disease or of failing to show greater concern about it. What is known about AIDS is often inflated or discounted in an effort to influence our understanding of it, with the result that the public is often misinformed. Not only have public apprehensions about AIDS intensified, but many people seem to cling to private fears about the illness and even discredit what public health officials say.
At first the federal government was expected to take steps not only to provide reliable information about AIDS but to investigate its causes and encourage the development of cures or treatments. But in view of the Reagan administration’s narrow idea of the scope of government, politicians and health officials found they had to bring pressure on the federal government to do anything at all about AIDS. Private citizens, including scientists, cannot easily investigate the disease’s causes and consequences, or conduct surveillance of its spread. No large charity has devoted itself to raising money for research into AIDS. Moreover, even if one does not invoke a moral obligation on the part of government to take steps to curb the spread of AIDS, it would seem prudent for the federal government to do so if only to prevent greater costs in the future. (It has been estimated by the CDC that the total costs of the first nine thousand AIDS-related deaths is around $5.6 billion—$1.2 billion in direct costs such as hospital charges, and $4.4 billion in disability payments paid by the government and “productive years” lost to the national economy.)
This is not what the government has done. When the disease first appeared the administration was carrying out a program for limiting the costs of health care and medical research. Not only was it unprepared for an epidemic, it imprudently chose not to devote funds to curbing AIDS until it was forced to do so, after unsuccessfully trying to push the problem onto local governments and Congress. The most balanced criticism of the administration’s response to AIDS is found in a technical memorandum prepared for Congress by the Office of Technology Assessment (OTA). The report is a review of how the AIDS epidemic has been handled by the Public Health Service, which governs five central agencies, including the CDC, the FDA, and the National Institutes of Health (NIH), where most government research on AIDS has been conducted. The PHS is itself a section of the Department of Health and Human Services (DHHS) and is overseen by the secretary of Health and Human Services (until recently, Margaret Heckler).
The OTA report concludes that the PHS was slow to concern itself with AIDS: the epidemic was clearly foreseen in March 1981, whereas research at NIH did not even begin until 1983, and the process of grant applications and approvals for research funding should have been accelerated to meet a public health emergency. When the DHHS did take up the problem of AIDS, the report says, the funds devoted to it were regarded by most researchers as inadequate. The report also says that Secretary Heckler’s announcement that AIDS was DHHS’s “number one” priority “has not always been supported by financial and personnel resources,” which were nearly always provided at the request of Congress:
Through the Assistant Secretary of Health, individual PHS agencies have consistently asked DHHS to request particular sums from Congress; the Department has submitted requests for amounts smaller than those suggested by the agencies; and Congress typically has appropriated amounts greater than those requested by the Department. Except when prodded by Congress, the Department has maintained that PHS agencies should be able to conduct AIDS research without extra funds.
In 1982 and 1983, the administration set aside nothing for AIDS research and the Congress appropriated some $33 million. In 1984, when it had been aroused to take some action, the administration requested $39 million for AIDS research; Congress appropriated $61 million. In 1985 the Congress set aside for AIDS some $37 million more than requested by the President. The President’s initial budget for 1986 called for a $10 million decrease in AIDS funding; under pressure from Congress the President finally asked for $126 million for this purpose. The House thought $190 million more appropriate, and the Senate $221 million. President Reagan himself did not publicly mention the subject of AIDS until September 17, 1985.
The OTA report also charges that the PHS was unable to coordinate its agencies, or even to ensure that they shared HTLV-3 culture samples. It criticizes the allocation of funds for AIDS research: most of the funds were spent on studying how the disease spread and where, whereas public education about AIDS was given little attention, even though it has been all along the sole way known to control the spread of the illness. Secretary Heckler is said to have ineptly handled the release of information about AIDS. She announced that a vaccine for AIDS would be ready for testing in 1986. In late September of 1985, the PHS announced that no vaccine would be available until 1990, and that the disease would therefore continue to spread until 2000.
A common accusation against medical researchers and doctors during the AIDS epidemic has been that they have refused to relax their habitually cautious way of communicating scientific knowledge. While this may be partly true, many doctors and scientists have been far from cautious in giving cause for alarm. Some scientists have apparently put the illness in the worst possible light in order to create public concern or elicit funds for research from private sources or from the federal government. Dr. Alvin FriedmanKien, an AIDS researcher who saw some of the first cases, said that AIDS “will probably prove to be the plague of the millenium.” Perhaps to show that AIDS should not be thought of as a homosexual disease, Dr. Mathilde Krim told the New York Post last September that “it is only a matter of time before it afflicts heterosexuals on a large scale,” although she gave no precise idea of what she meant by a large scale, or just how she expected heterosexuals to become affected.
Still other scientists have described the disease in such a way as to suggest that they are trying to frighten people. For example, a little more than a year ago, Dr. Robert Gallo told the medical correspondent of a homosexual newspaper, the New York Native, that “normal healthy people with no disease symptoms at all who aren’t sexually active, who are not IV-drug users” are not free of risk: “I think they’re at risk of getting infected too. The virus just needs time to grow in these populations.” Gallo also said that “this virus can be transmitted by any form of intimate contact” and that he “would advocate sexual abstinence until this problem is solved. It may be a while, it may be a lifetime.”
In testimony this September to the Senate Appropriations Subcommittee on Labor, Health and Human Services, Dr. William Haseltine, a reseacher at Harvard Medical School, who has helped to clarify the biological mechanism by which HTLV-3 transforms healthy cells and causes disease, claimed that “drug abuse by prostitutes is a major route by which the AIDS virus is now entering the heterosexual population.” But as I explained earlier, this has not been the view of many health officials. According to Haseltine; almost one half of all people infected with the virus six years ago have some major, serious, symptom of infection, and the figures may rise higher. But this claim should be compared with the record of a group of thirty-one homosexual and bisexual men in San Francisco who participated in a study of hepatitis B in 1978, and whose earlier blood specimens were later found to have contained the antibody to HTLV-3. By 1984, only two of these men had AIDS, and eight had AIDS-related conditions; no further cases of AIDS had been reported among the men by September 1985. Only one in three, therefore, had some sort of symptomatic infection after five to seven years.9
It is true that the future of these currently healthy men is not known and that there are many other ways to deny that the evidence is reassuring. One can even conjecture that sooner or later all will eventually contract a serious illness. Perhaps some future stress on their immune systems in ten, twenty, or thirty years will trigger the previously latent virus into action, causing disease; one might argue that the incubation period of AIDS or ARC varies so widely from person to person that the disease has not yet manifested itself in these men. Or one might claim that the San Francisco study does not prove much because the virus may be becoming more virulent with time (even though viruses that kill their host cells, like HTLV-3, are maladapted and generally become weaker in order to reach an accommodation with their hosts). But Haseltine does not offer any good reasons to suppose that any of these possibilities is more than speculative. If the picture of AIDS presented by Dr. Liebowitch is correct, over 90 percent of those carrying the virus will never “experience any symptoms at all.”
Haseltine writes, “It is estimated that over a ten-year period, approximately half of the people who were exposed may contract some serious symptom of the virus infection.” But he does not say how he knows who was “exposed to” (as opposed to infected by) the disease. Haseltine also claims that one in ten Americans will be infected in the foreseeable future. There have been other projections like these. The CDC’s James Curran said that AIDS “will become the leading cause of death for gay men by the time we are all dead,” and Mayor Koch said that there will be 80,000 AIDS cases in New York in the next few years.
But such projections do not take into account the possibility that information about AIDS will lead at least some people to change their behavior. For example, there is good evidence that some homosexuals have altered their sex habits. According to the New York City Department of Health, cases of AIDS among homosexuals in New York have gone down from 67 percent of the city’s total in 1983 to 57 percent this year, whereas IV drug abusers (who do not seem to have changed their habits appreciably) made up 27 percent in 1983 and now are 34 percent. Change of behavior may also affect such estimates as the one by the CDC that 1 or 2 percent of those infected with HTLV-3 get AIDS; it may be that those who take care not to expose themselves further to the virus through sex practices or reuse of dirty needles may avoid both AIDS and ARC. In their public statements about AIDS, neither Haseltine, Krim, nor Gallo seems to have given much attention to these possibilities.
AIDS aroused little interest in the press until the possibility that it could be passed by casual contact was raised. Some homosexuals, believing that funds would become available for research if the public were sufficiently concerned, made efforts to publicize the effects of the disease. One group of homosexuals hired a public relations adviser to promote the view that heterosexuals were also threatened by AIDS. 10 Such efforts backfired. The uncritical reliance by some reporters on scientists’ opinions, and their failure to explain why research results are often tentative and must be qualified, produced more fear than reassurance or active concern about people with AIDS.
In 1983 a large number of stories appeared that unduly emphasized the possibility of the spread of AIDS into groups previously unaffected by it. With the revelation of Rock Hudson’s mortal illness in 1985, obsessive attention was once more paid to AIDS. The same people with AIDS—a soldier, a hemophiliac child, a family—seemed to be interviewed again and again by different newspapers and magazines. A drug addict who gave up his habit some years ago and then developed AIDS was interviewed during the same week by The Village Voice and The New York Times. By 1985, some of the same newspapers, magazines, and television news programs that had contributed greatly to public fears about AIDS claimed that these fears were “hysterical”; they now featured a kind of story that was intended to separate “myth” from “reality.”11
In issuing, statements about AIDS, religious groups and conservative political spokesmen have not been primarily concerned with public health, although Representative William Dannemeyer of California has said that legislation he has proposed in Congress, including cutting off certain federal funds to cities that don’t close bathhouses, is necessary to protect public health because it remains a “possibility” that casual contact can spread AIDS. (Dr. Paul Cameron, a consultant to Dannemeyer, has explained that “there would be no AIDS epidemic in the West if the laws of Moses had been followed.”) Most of these spokesmen have tried to use AIDS in order to mobilize opposition to laws preventing discrimination against homosexuals and, more broadly, recognition of homosexuality as a “natural alternative” to heterosexuality. For example, if the New York City Council voted for a “gay rights” bill, wrote a correspondent in the New York Post, “the AIDS-promoting way of life would be officially approved by law.”
Most of this commentary has been ignorant and sanctimonious. The director of communications of the White House, Patrick Buchanan, wrote last year in the conservative magazine The American Spectator that the “essence” of homosexual life is “random, repeated, anonymous sex—runaway promiscuity. The chapel of this new faith has been the bathhouse”; such a way of life leads to illness and death, “call it nature’s retribution, God’s will, the wages of sin, paying the piper, ecological kickback, whatever phraseology you prefer.”
Norman Podhoretz recently wrote in the New York Post that “homosexual activists” have “propagated” the idea “that it is the rest of us who are responsible for the existence and spread of this horrible disease.” Furthermore, instead of giving up buggery, he complains, homosexuals “demand that society undertake a crash program to develop a vaccine (or what one activist calls ‘a one-tablet cure’) that would allow them to resume buggering each other by the hundreds with complete medical impunity.” Politicians who accommodate this demand “are giving social sanction to…a kind of AIDS in the moral and spiritual realm.” He does not say which homosexual activists claimed that HTLV-3 was created and spread by “the rest of us.” Podhoretz may be speaking of that increasingly rare homosexual who continues to believe that the triumphant expression of the “gay revolution” was a “communal” (i.e. promiscuous) sexuality and who also paradoxically says that homosexual promiscuity was “imposed” on homosexuals by “straight” society. But he ignores the views of most spokesmen for homosexuals and seems not to have grasped the elementary facts about HTLV-3 and how it can be transmitted.
From the beginning of the AIDS epidemic many homosexuals have found themselves in an awkward position: eager to stimulate concern about the disease, they sought to make people aware that it need not affect only homosexuals. At the same time, when some press reports announced that no one was safe from AIDS, the same homosexuals feared that too much publicity of this kind might lead to discrimination against them as the “creators” of the epidemic. Again, many homosexuals demanded greater government action in controlling AIDS, but then feared that government surveillance of the disease, and research into its causes, might lead to invasion of their privacy.
Both concerns were genuine. But many homosexual spokesmen overplayed the antihomosexual element in “government” action and in the social response to AIDS at large. Some of them attributed only antihomosexual prejudice to the slow federal response to AIDS and the insufficient funding of research into the illness. This leaves out what was noted earlier, that Congress has consistently voted funds for AIDS research and overruled the administration. The Reagan administration has begun to address the problem of AIDS, but it is far from clear that we would be any closer to understanding or curing AIDS had the administration or Congress responded sooner. Luc Montagnier and his colleagues at the Institut Pasteur in Paris discovered the virus with a far smaller budget than was available to the National Cancer Institute.
Antihomosexual feeling alone doesn’t explain why scientists devote themselves to particular research problems or why government agencies allocate more money to the study of one disease than to another. For example, the director of the CDC and assistant secretary of Health and Human Services, James Mason, recently said that “I have responsibility for I suppose several thousand diseases, and AIDS is only one of them. As I have to say, there are 1,000 people dying a day because of tobacco. I want to put into perspective that this isn’t our leading killer and never will be.” More generally, as Dennis Altman points out in his clear and levelheaded book, AIDS in the Mind of America, the social response to AIDS in the US has not been one of antihomosexual feeling alone:
AIDS contained all the ingredients to attract a moral crusade, which would single out its victims as targets for both fear and loathing. In fact, some of this occurred. However, four years after the epidemic began, it seemed possible to suggest that this response was less widespread than many had anticipated, and that while AIDS has produced many examples of persecution and discrimination, these did not amount to a national campaign against homosexuals and Haitians.
AIDS has, and will, lead some politicians to forego support for legislation that would ban discrimination against homosexuals. But it is also true, as Altman notes, that the efforts to secure public recognition of homosexuality as what he calls a “gay identity” have gained in recent years: he mentions the successes of politicians who have openly acknowledged themselves as homosexual—he cites a homosexual congressman, several homosexual judges and legislators, and three mayors—and he adds that the AIDS epidemic had “probably acted to strengthen feelings of homosexual identity.”
Indeed, the claim is often made that “the gay community” has taken care of its own during the AIDS crisis. But to speak in this way is to attribute a specious unity to homosexuals. It leaves out the many homosexuals who do not, for whatever reason, claim to have a “gay identity” or who live in poor inner cities where there is no discussion of “gay rights.” Talk of the “community” also obscures the distinctive efforts of those homosexuals who actually did something to alert others to the dangers of AIDS. Groups like the Gay Men’s Health Crisis (GMHC) in New York raised funds by themselves for AIDS research and treatment, public education, and care for AIDS patients when the New York City government and the state and federal governments did next to nothing. Fully 80 percent of the GMHC’s funds were raised by asking homosexuals to donate them. Groups such as these across the country managed to persuade congressional leaders such as Representative Henry Waxman, a Los Angeles Democrat who heads a congressional subcommittee that oversees the PHS, and Representative Ted Weiss of New York to lobby for more funds for research and prevention.
Some of these groups have tried to persuade many homosexuals to undertake the difficult tasks of radically modifying their sex practices. Whether because of their efforts or for other reasons, the San Francisco City Clinic recently said that between 1980 and the present, rectal gonorrhea had declined by 86 percent. Many homosexual newspapers now put much emphasis on “safe sex,” in which “body fluids” are not “exchanged”—a polite warning against fellatio and anal intercourse. There are clubs in many cities where “fluid patrol officers” ensure that masturbation alone occurs. Some homosexual men have tried to beat the epidemic by practicing safe sex but only with a steady partner; the strategy is pointless, of course, unless that partner does not himself wander and bring home the virus.
“Safe sex,” moreover, as some currently advocate it, may be unrealistically stringent. Young boys entering the period of their lives in which they have the most sexual encounters find it difficult to confine themselves to “fantasy” and dry kissing, and yet it may be easier for them to practice safe sex than for older men, who long ago developed their sex habits; the more realistic among homosexual spokesmen have urged scientific researchers to verify to what extent HTLV-3 and other viruses are prevented from passing in anal intercourse to the recipient partner if condoms or spermicides are used. The frustration of safe sex is described by a young man who wrote in the New York Native:
I particularly resent my friends who came out in the Sixties, the ones who fucked their brains out in the Mine Shaft, dropped acid at the Flamingo, and orgied on Fire Island. They regaled me with their wild stories as I anticipated stories of my own. Yet what did I do today? Checked for swollen glands and looked at porno magazines.
Yet even prostitutes advertise themselves in homosexual newspapers as practicing safe sex. In a recent issue of The Advocate, there is an advertisement for a sadomasochist “safesex master” who practices “bondage” and “worship.” A Georgia “bodybuilder” describes himself as “completely ‘AIDS-screened”‘ just before announcing a “$120 minimum.” An Illinois escort service writes “staff health tested biweekly,” but then offers a free bottle of “poppers” and a “2 hrs/price of 1” rate for its “playmates.”
Government public health officials, members of the press, homosexual spokesmen, and others have competed with one another to influence our understanding of AIDS. The unintended consequence is that no clear understanding of the disease has emerged, so that people have made up their own. Legislators and public health officials have had, in effect, to contend not only with the objective features of AIDS but also with fears about it, some entirely unjustified.
For example, the discovery last year of a test to detect antibodies to HTLV-3 in blood samples—not a direct test of the presence of the virus or, as often reported, of “exposure” to it, but of past or current infection by it—might have seemed to give public health officials a useful way of avoiding further spread of AIDS. The test could be used not only to screen blood used in transfusions, as it has been, but also, with the cooperation of those who have positive reactions, to notify those who might have been infected to take the test and avoid further spread of the virus. This might be particularly helpful to women who might have unwittingly infected children during pregnancy or labor and delivery or those in whom a change of sexual behavior or drug abuse could forestall a very serious case of infection. But when Secretary Heckler announced in 1984 that “yet another terrible disease is about to yield to patience, persistence and outright genius,” and that a blood test would soon be licensed by the FDA, she set up false expectations. She said that this test could “identify AIDS victims with essentially 100 percent certainty” and “would allow prompt and early diagnosis of people who may have been infected by HTLV-3.”
The test, however, is not as reliable as she claimed. It sometimes registers positive when there is no antibody in a blood sample. The test can also register “false negatives”: some carriers, it seems, have infectious virus in their blood but no antibodies. Use of the test at an inappropriate time may also be misleading: the blood tested may contain antibodies to the virus as a result of a transient infection that will go away, while some newly infected people registered negative despite the presence of the virus in their blood. 12
Even if the test were reliable, it cannot diagnose either AIDS or ARC: a positive result may mean that a person has had a mild infection at some time in the past, or a current infection that will go away, or that a serious illness will develop at some time in the future. Added to its unreliability, moreover, is the danger that employers, insurers, landlords, or judges will treat the results as diagnostic and use them to discriminate against people who register positive. For this reason, it seems unjustified to make the test mandatory or even require that the results be reported to state or federal public health officials, even though such information could be helpful in controlling HTLV-3 infection.13
The dangers of using the HTLV-3 blood test to do more than screen blood have already been illustrated by the way it has been used by some employers, by insurance companies, and by the military. AIDS, as we have seen, is an expensive way to die. Many of its victims are young and do not have medical or life insurance; for those who do, the costs of the illness are partly paid by their employers who have group policies. Some companies have said that they will keep those with AIDS on the job so long as they can work and will pay for their medical bills as they would those of any employee with catastrophic illness, but others are considering whether to require that employees pass a blood test. Some life insurance companies, such as the Transamerica Occidental Life Insurance Company, now require blood tests for large policies; they plan to reject or increase the premiums of those who register positive, although they have not explained the basis on which higher premiums are to be calculated. Other insurance companies are hoping to profit from more expensive policies designed for those whose test results are positive but are in good health nevertheless.
It is understandable that these companies are anxious to protect themselves from large claims from AIDS victims; and they fear that some who have AIDS or ARC will buy policies without first revealing their test results. They are not public service companies, but depend on the calculation of risks, whether from diabetes, smoking, or HTLV-3. But since the test in question does not indicate risks accurately, to use it to speculate about the life history of an applicant while exposing him to possible discrimination if test results are made available to others is ethically unjustified.
Nor has the army made a convincing case for its recent decision to require military personnel to take the blood test for HTLV-3. Homosexuality and drug use are cause for dismissal from the armed services. The military stated at first—presumably to encourage service members not to conceal homosexual behavior or drug use—that a positive blood test would not be grounds for automatic dismissal. It subsequently reversed itself and claimed that anyone admitting to homosexual conduct or drug use could be immediately discharged, although honorably and with medical benefits. Homosexuals and drug abusers in the armed services therefore are likely to report that they contracted the disease from prostitutes and other heterosexual contacts. Under these circumstances, the testing that is now underway is likely to produce not only information of unproven diagnostic value, but statistics incompatible with what is known about the epidemiology of AIDS.
Closing bathhouses may also be ineffective. In October the New York State Public Health Council issued a sixty-day order permitting New York City authorities to close bars, bathhouses, or other commercial establishments in which oral and anal intercourse—which it defined as “introduction of semen into the rectal or oral cavity of another”—is “allowed.” An “establishment” was defined as “any place in which entry, membership, goods, or services are purchased.” This is not likely to do much more to control the spread of AIDS among homosexuals than what they have themselves already done and are continuing to do voluntarily. The New York Post has called the civil rights of bathhouse patrons “irrelevant banter.” But AIDS in bathhouses is contracted through consensual acts, and sodomy among consenting adults is not illegal in New York, although it is in many other states. While the state government has in principle the right to intervene in private sex activity in order to protect people from an epidemic of highly contagious disease, it must establish that the disease is highly contagious and that any action it takes to arrest its spread is medically sound. It has not been shown that AIDS is very contagious, and imposing the new restrictions on oral and anal intercourse is not likely to arrest it.
For one thing, while anal intercourse in which the active partner does not use a condom has been widely associated with the transmission of HTLV-3, few public health officials have satisfied themselves that oral intercourse can transmit it. (On the other hand, vaginal intercourse between a woman and an infected man—which is not even mentioned in the regulations—is thought by many of them to be a possible mode of transmission.) Secondly, although the bathhouses exist largely for sex, they do not “foster” unprotected anal intercourse, as Governor Cuomo has claimed, any more than bars promote whiskey (rather than wine) or insensible drunkenness. Many men have gone to these places without engaging in anal intercourse, both before and during the AIDS epidemic; and those who do so can use condoms in the bathhouses as much as they can at home. Some do, and there is little gained for public health by interfering with their activities. Others confine themselves to masturbation or other “safe” practices—favored activities during an epidemic.
No doubt there are still some men who arrive at bathhouses drunk or drugged and allow themselves to be the passive partner in unprotected buggery, just as there are alcoholics and gluttons and others who destroy themselves. But these are fewer in number than they once were, and, as the New York City Health Commissioner concluded, there is no convincing evidence that lives will be saved if bathhouses are closed; by scattering those homosexuals who would go to bathhouses, such regulations would make it more difficult to locate them and instruct them about the dangers of AIDS. And if bathhouse patrons want to, as is suggested by the many descriptions of such men as “compulsive,” they will continue to endanger themselves—in hotels, private clubs, alleys, and the backrooms of bars. There will always be ingenious lawyers and corrupt officials to help entrepreneurs find places for them to do so. Legal restrictions have rarely proved successful against the ingenuity of sexual desire at finding outlets.
The error of shutting down places like bars and bathhouses is illustrated by the case of San Francisco, which tried to close fourteen bathhouses, sex clubs, theaters, and back rooms in October 1984. A superior court judge allowed them to reopen, subject to restrictions of various kinds, which included a ban on oral-genital, oral-anal, and anal-genital intercourse; and on private rooms. Monitors were hired to ensure compliance with these rules. Establishments that had hotel licenses were exempted, so that men who wished to pursue high-risk activities could go there, or to parks, alleys, and other public places; a boom in the bathhouse business of neighboring towns like San Jose was observed during the shutdown.
New York now has to try to enforce a ban on oral and anal intercourse, not only in bathhouses but in hotels and other “establishments” as well. City authorities have already closed a leather bar in Greenwich Village and a bathhouse. But what does it mean to say that an establishment “allows” these sex practices? If a couple goes into a hotel on Fifth Avenue, how will the authorities discover that they are engaging in anal intercourse? And if they do, should the entire establishment be closed? Will people who indulge in oral and anal intercourse without introducing semen into the rectal or oral cavity of another be exempt from the ban? Is the ban on the introduction of semen or on intercourse? Closing the bathhouses will be ineffectual. Insofar as the virus is transmitted in them, this will decrease only as homosexuals change their sexual behavior voluntarily. Several bathhouses have already closed for lack of business; and some homosexual groups such as the Coalition for Sexual Responsibility have already persuaded some bathhouses to turn up their lighting, to hand each patron safe-sex literature and condoms, and refuse entry to drugged or intoxicated men.
The case for quarantining AIDS patients is weaker still, except those who can be demonstrated to be highly contagious and to be behaving in such a way as to threaten public health (such as a case of a prostitute with AIDS who insisted on returning to the streets). AIDS is not like scarlet fever, which is easily contracted and highly infectious; and since it is not, those who have AIDS have the same civil rights as anyone who has a serious illness.
Even if quarantine were justified, it is not clear to whom it would apply, apart from the rare exceptions I have mentioned. It is impracticable to isolate the million people or more who carry HTLV-3 on an island off Cape Cod, as was suggested by a Boston doctor. And there is little point in isolating those with AIDS. As Robert Gallo and his colleague Flossie Wong-Staal wrote recently in Nature: “In our experience, patients with AIDS have less virus in their blood than ‘healthy’ carriers or people with AIDS-related complex, and virus was isolated from saliva of healthy carriers, not from people with AIDS.” Still, a New York City judge asserted this autumn, “I can’t imagine that a person virtually on his last legs from AIDS is allowed to run around and infect others and the [Health Department] doesn’t pick them up.” But how could people on their last legs run around, let alone infect others? This is an example of the confident ignorance about AIDS that has grown since the illness first captured the public imagination.
Is it therefore true, as it has become popular to say, that “education” is the best way of controlling the spread of AIDS? Yes, but this depends on what is meant by education. The release of large amounts of information to the public is not education unless this information is accurate, affects the way people think and act, and is reinforced by the example of others. “Safe sex” campaigns can work in San Francisco’s homosexual neighborhoods because many men there are already practicing safe sex; it is also a sad fact that many of them have had friends who have died from the disease. To be effective, education must be consistent; it must specifically identify the ways in which AIDS is spread (at the risk of offending some who do not wish to be told much about the practices of some homosexuals and drug users) and be expressed in language that can be understood by people unfamiliar with medicine. It must be available to those who do not speak English and be displayed in places where IV drug users and others meet. It must reach adolescent boys and girls, some of whom experiment with needles and sex at the same time, and who produce hundreds of thousands of children each year.
Public education has not worked for those who are arguably most at risk, namely IV drug users, and for a good proportion of those who are not at risk but who would like to know, and should know, more about AIDS. As I have argued, some of the failure of public education can be attributed to confusion arising from the form in which that information has reached people. But even the most specific and readily intelligible education has limited value if the people it is supposed to reach cannot, for whatever reason, summon themselves to modify their fears and speculations in light of new evidence. It is difficult to escape the impression that some people learn a considerable amount about AIDS and yet continue to act on unjustified fears about it.
Some do so in a kind of play-panic, enjoying the sensations of fear they experience as they might while watching a horror film. Others apparently cannot prevent themselves from fixating on the most terrifying medical possibilities and employing an absurdly stringent standard of risk to insulate themselves or their children from people with AIDS. When their children have an allergy, they consult a doctor at once. In assessing the risks that the same children might contract AIDS from being in the same classroom as a hemophiliac boy with AIDS, or even a child who lives with another child who has AIDS, they discount altogether the advice of the American Academy of Pediatrics, representing 28,000 pediatricians, which has stated that most young children with AIDS pose no threat. It seems plain that still others don’t really wish to believe that AIDS is not catching because it would rob them of the opportunity to blame a calamity on people they have never liked anyway. The continued reluctance of so many people to give up unwarranted apprehensions about AIDS seems at times almost as compulsive and driven as the behavior of those drug abusers and bathhouse patrons who are accused of spreading the illness.
—December 20, 1985
January 16, 1986
For a clearly presented guide to the immunology of AIDS, as well as many other questions about the syndrome, see the collection edited by Victor Gong. ↩
See James W. Curran, et al. (members of the AIDS Branch, Division of Viral Diseases, and the Office of the Director, Center for Infectious Diseases, Centers for Disease Control, Atlanta, Georgia), “The Epidemiology of AIDS: Current Status and Future Prospects,” Science (September 27, 1985), p. 1354. Estimates vary because of the difficulty of making projections on the basis of relatively small samples. Dr. Mervyn Silverman, former director of health for San Francisco, told me that only about 1 percent of those infected with HTLV-3 have clinical symptoms of AIDS. Last April, Dr. Robert Gallo, a leading researcher of AIDS, said that two million Americans were infected by HTLV-3 (the London Observer, April 7, 1985, p.1). ↩
Dr. Mathilde Krim, chairperson of the AIDS Medical Foundation in New York, writes that “it appears that, in order to infect, this virus [HTLV-3] must be virtually injected into the blood stream and then encounter cells in which it can multiply” (“AIDS: The Challenge to Science and Medicine,” Hastings Center Report, Vol. 15, No. 4, August 1985, Special Supplement, p. 4). ↩
A report in the Journal of the American Medical Association (October 18, 1985) claimed that ten men recognized as having AIDS or ARC at the Walter Reed Army Medical Center acquired their condition through heterosexual intercourse, most of them from prostitutes. But the report has been criticized, most often because the military personnel whose cases were studied would not have readily admitted homosexual conduct or drug use if they had engaged in it. ↩
Thomas A. Peterman, et. al. “Transfusion-Associated Acquired Immunodeficiency Syndrome in the United States,” Journal of the American Medical Association (November 22–29, 1985), p. 2913. ↩
See “Update: Evaluation of Human T-Lymphotropic Virus Type III/Lymphadenopathy-Associated Virus Infection in Health-Care Personnel—United States,” Morbidity and Mortality Weekly Report (MMWR), Vol. 34, No. 38 (September 27, 1985). ↩
“Needlestick Transmission of HTLV-III from a Patient Infected in Africa,” Lancet II (1984), pp. 1376–1377. ↩
See MMWR, Vol. 34, No. 45 (November 15, 1985) ↩
See MMWR, Vol. 34, No. 38 (September 27, 1985). ↩
See Harry Schwartz, “AIDS in the Media,” Science in the Streets: A Report of the Twentieth Century Task Force on the Communication of Scientific Risk (Priority Press, 1984), p. 88. ↩
For a guide to reports about AIDS in the medical, general, and homosexual press, see the bibliography compiled by McLeod and Miller. ↩
On the test’s unreliability see the OTA report and Carol Levine and Ronald Bayer, “Screening Blood: Public Health and Medical Uncertainty,” Hastings Center Report, Vol. 15, No. 4 (August 1985), Special Supplement, p. 9. ↩
In its recommendations for preventing transmission of HTLV-3 the PHS says that “because AIDS is a bloodborne, sexually transmitted disease that is not spread by casual contact, this document does not recommend routine HTLV-III/LAV antibody screening” for healthcare workers, food handlers, or other workers in offices, factories, and other workplaces. ↩