|AIDS: What Is To Be Done||View other pieces in "Harper's"|
|By Mark Danner , Jonathan Lieberson, Mervyn Silverman, Mathilde Krim, et al.||October 1985|
|Tags: Harper's Forums | AIDS|
When a mysterious contagion known as Acquired Immunodeficiency Syndrome began to kill large numbers of people a few years ago, various moral authorities took solace in the observation that its victims, most of whom were homosexuals or drug addicts, seemed well chosen for divine retribution. Confronted with a lethal and seemingly unappeasable plague, enlightened man found himself grateful to discover a reassuring semblance of the wrath of God.
As the numbers continued to mount and it became undeniable that even the morally immaculate were among the afflicted - as they had been from the beginning - it grew increasingly difficult to consign AIDS to its accustomed place as a pestilence of the lower depths. Only when Rock Hudson's illness became known did the disease achieve the status of a full-fledged "social problem." But the confirmation that viruses remain unimpressed by human pieties did not address the issue of how to slow the spread of a deadly and still puzzling disease.
What exactly do we know about AIDS? Given that knowledge, how can the state marshal a response while protecting the rights of the disenfranchised groups that have been most affected? Harper's recently invited a group of public health officials, physicians, scientists, and medical historians to consider what can be done to contain a modern plague.
The following Forum is based on a discussion held at the Princeton Club in New York City.
Jonathan Lieberson served as moderator.
is contributing editor of the New York Review of Books and
an associate at the Population Council, anorganization concerned with
social scientific and biomedical research on population and development.
MERVYN F. SILVERMAN
is a consultant to local governments and private organizations on AIDS
and other health issues. From 1977 to January 1985 he was director of health
for the city and county of San Francisco.
is chairperson of the board of trustees of the AIDS Medical Foundation
and former head of the interferon laboratory at the
Sloan-Kettering Institute for Cancer Research.
is an associate for policy studies at the Hastings Center and co-director
of the center's Project on AIDS, Public Health, and Civil Liberties.
is director of Medical Service 1 at Montefiore Medical Center in New York City
and an associate professor of medicine at Albert Einstein College of Medicine.
He supervises the care of many AIDS patients and conducts clinical and
epidemiological research into how the disease is transmitted.
is executive director of the AIDS Action Council of the Federation of
AIDS-Related Organizations, a Washington, D.C., lobbying group that
represents local organizations providing a wide range of support services.
ANN GIUDICI FETTNER
writes about AIDS for the New York Native.
She was senior health adviser to the government of Kenya from 1977 to 1980.
A revised edition of her book The Truth About AIDS will be published in October.
is deputy commissioner for epidemiologic services at the
New York City Health Department and oversees the
department's research on AIDS.
ALLAN M. BRANDT
is an assistarit professor of the histary of medicine and science at
Harvard Medical School and the author of No Magic Bullet:
A Social History of Venereal Disease in the United States Since 1880.
MATHEW J. SHEBAR
was director of legal services for Gay Men's Health Crisis.
He is the author of The Gay Men's Health Crisis Attorneys' ManuaL
His forthcoming book, Lowenstein's Protege, describes his experiences
representing people with AIDS.
JONATHAN LlEBERSON: As everyone is aware by now, AIDS continues to run its appalling course. At the beginning of 1981, the year AIDS was first recognized, there were fewer than sixty cases in the United States; since then, there have been more than 12,000. Every day more and more people are diagnosed as having a lethal condition for which, as yet, there seems to be no effective treatment.
In view of the gravity of this situation, our task today is to review the facts about the epidemic and to discuss what factors influence society's response to it. What precisely is known, and not known, about AIDS? Have its cause and the means by which it is transmitted been definitely established? Is there reason to expect that it will increasingly affect people in groups that have remained largely unaffected? Are researchers close to finding a cure or an effective treatment for AIDS?
Second, what policies should the United States and other nations adopt in dealing with this epidemic? What in fact has been done by the U.S. government thus far? What principles should guide public discussion of ways to control and contain the epidemic: Under what conditions should we consider using measures that may raise troubling issues of privacy, confidentiality, and civil rights? Has the government's response been greatly influenced, as many charge, by the fact that most of those afflicted with AIDS are homosexuals or drug addicts?
Finally, how has society responded to AIDS? How will it respond as the number of patients continues to rise? And how will the spread of AIDS influence sexual attitudes in general? Dr. Silverman, how many people are currently afflicted with AIDS, who are they, and how fast is it spreading?
MERVYN F. SILVERMAN: As of August 12, 12,408 people in the United States had been reported as having AIDS; 6,212 had died. The number of cases is roughly doubling every year, but it is doubling within certain well-defined "highrisk" groups which emerged early on in the epidemic. According to the Centers for Disease Control in Atlanta, gay and bisexual men constitute 73 percent of AIDS patients nationwide; intravenous drug abusers make up 17 percent; transfusion recipients 2 percent; and hemophiliacs one percent. Heterosexuals who have had sexual contact with members of high-risk groups make up another one percent, and the remaining AIDS cases are classified as "noncharacteristic." It is expected there will be more than 30,000 cases by the end of 1986.
MATHILDE KRIM: It should be emphasized that these figures include only cases of the disease as defined by the CDC. This narrow definition applies to a relatively small proportion of cases within a much larger population of diseased people. Those numbers, however frightening, represent the tip of the iceberg.
The condition now known as AIDS was first recognized in 1981 when an unusual form of pneumonia, Pneumocystis carinii, killed five young men in Los Angeles. All five were homosexual and suffered from a profound impairment of their immune systems. In particular, they lacked T-4 lymphocytes, a type of white blood cell that is essential to defending the body against infections. As the number of cases began to grow, physicians saw this pattern repeated: all people with AIDS had a severely impaired immune system that left them vulnerable to rare "opportunistic" infections and cancers, particularly Kaposi's sarcoma. This association of different diseases, several of which often strike the same patient simultaneously, constitutes a "syndrome." The conglomeration of illnesses was apparently made possible by an underlying immunodeficiency that the heretofore healthy patients had somehow "acquired." Thus, Acquired Immunodeficiency Syndrome, or AIDS.
For two years, researchers focused on identifying the cause of the immune deficiency. Meanwhile, the CDC's nationwide surveillance showed that the disease was concentrated in the high-risk groups Dr. Silverman named. Researchers noted that members of these groups tend to be exposed to various infections or allogeneic cells - such as foreign blood cells or sperm - both of which can damage the immune system; some even speculated that AIDS might simply be an extreme result of this damage. But other researchers believed an infectious agent might be involved.
In April 1984, Dr. Luc Montagnier's group at the Pasteur Institute in Paris isolated a virus that he called "lymphadenopathy-associated virus," or LAV, because it had been found in a patient with chronically swollen lymph glands. Less than a year later, Dr. Robert Gallo of the National Institutes of Health isolated a virus from an AIDS patient that he called "human T-cell lymphotrophic virus, type three," or HTL V-III. The two viruses were later found to be virtually identical, and thus the virus now thought to cause - or at least be one cause of - AIDS is known as LAV/HTLV-III.
LlEBERSON: But AIDS patients are susceptible to all sorts of infections. What proof is there that this particular virus causes the disease?
KRIM: LAV/HTLV-III has a strong predilection for infecting and growing in T-4 cells when studied in the laboratory. And it has been found in virtually all patients suffering from AIDS itself or from the lesser forms of the disease that don't fit the CDC definition.
Dr. Gallo's group was able to develop a blood test, called the ELISA test, which indicates whether someone has been exposed to the virus. This test does not detect disease, only the antibodies formed when someone has heen exposed to LAVIHTL V-III. But it can be used to screen contaminated blood from the blood supply and to estimate the spread of the virus. For example, surveys show that in New York City, as many as 80 percent of IV drug users, as many as 60 percent of healthy gay men, and one out of every thousand healthy blood donors have been infected. These numbers probably vary from city to city, but the CDC has estimated that a million people might already have been infected nationwide.
While infection with the virus seems necessary for the occurrence of AIDS, it isn't clear whether it's sufficient to cause it. The great majority of those with the virus as yet show no symptoms. On the other hand, the incubation period for AIDS may be very long, from several months to more than five years. Meanwhile, many who are sick are not considered to have AIDS. According to the CDC's definition, one must not only show an acquired immune deficiency but be afflicted with one or more of certain specified opportunistic infections, or with certain cancers. Yet many infected people exhibit a broad range of symptoms, from persistent low-grade fever, unexplained weight loss, and swollen lymph glands to various degrees of immune deficiency sometimes associated with infections and cancers other than those specified by the CDC.
LIEBERSON: Would it be correct to refer to these manifestations as "pre-AIDS," as some have?
KRIM: No, "pre-AlDS" implies that these symptoms inevitably lead to AIDS. Yet many patients have had them for several years and have not gone on to develop AIDS. The symptoms constitute a condition that is now referred to as AIDS-related complex, or ARC. There may be ten ARC patients for every one AIDS patient.
RONALD BAYER: Current estimates are that between 5 percent and 20 percent of those infected with LAV/HTIV-III will go on to develop AIDS-related complex or AIDS within the next five years. This means there might eventually be as many as 200,000 terribly ill people in this country.
KRIM: The problem with those percentages is that we have nor followed any of these infected people for more than about five years. Since AIDS can take so long to appear after infection, the percentage of those infected who will develop the full-blown syndrome may be much higher than we think. And of course as we speak, the million Americans who are infected are going about the business of transmitting the vicusstudies show that at least two thirds of those with the virus are capable of infecting others. So there may weII be many more than 200,000 cases.
GERALD FRIEDLAND: What often happens with a new disease is that the lethal cases - the most sad, dramatic ones - are counted first. Yet these represent only the top of a pyramid beneath which extend a majority of infected people who exhibit a broad spectrum of symptoms, or none at all. Because AIDS is such a new disease, the ratio of asymptomatic infection to mild disease to serious disease to lethal disease isn't clear. The 5 percent to 20 percent estimate is based on the current epidemiological evidence. Yet, as Dr. Krim said, the incubation period could be much longer than the disease's history itself. The virus could get into a cell and remain dormant. And then, ten or fifteen years later, some biostress might cause it to manifest itself. But we can't know yet, because we are making history now.
SILVERMAN: What makes the virus manifest itself? Each of the stages between the mildest sign of LAV/HTLV-III infection - which may simply be a positive blood test - and AIDS as defined by the CDC represents a greater deterioration of the immune system. In order to develop any of these manifestations, or perhaps even to be infected in the first place, co-factor of some sort is probably necessary. Since those who develop the disease faII into groups that tend to have compromised immune systems, an existing weakness in the immune system seems the most likely co-factor. By shooting up for years, IV drug abusers have destroyed, or at least attacked, their immune systems. People who need blood transfusions tend to be in very difficult straits and probably have weakened immune systems, as do hemophiliacs, who receive blood products from thousands of people during their lifetime.
LIEBERSON: But why have homosexuals constituted the majority of cases from the beginning? And what is meant by "homosexual" here? What kind of homosexual? What groups?
GARY MACDONALD: Good Lord, are there more than ten kinds? We should have invited Dr. Kinsey. "Gay or bisexual men" refers to a group of males, largely between the ages of twenty and fifty, who have sex with other males.
LlEBERSON: I wasn't looking for a definition of homosexuality. Given the fact that members of the high-risk groups tend to have pre-existing immune deficiencies, are we speaking about any homosexual, or only those who engage in certain practices?
SILVERMAN: Gay men tend to have compromised immune systems for a couple of reasons. First, semen is known to be immunosuppressive when it is introduced into the bloodstream through breaks in mucous membranes. Second, gay men, especially "fast-lane" gays who have many sexual partners, generally have a lot of infections, which weaken their immune systems.
KRIM: Certain sexual acts also seem to facilitate transmission of the virus. In particular, anal-receptive intercourse may facilitate both transmission- by letting infected sperm into the bloodstream - and an immunological reaction to that sperm.
MACDONALD: Look, I think the moment may have arrived to desexualize this disease. AIDS is not a "gay disease," despite its epidemiology. Yet we homosexualize it, and by so doing end up posing the wrong questions. There is no evidence to support the notion that gay men in general are immunocompromised because they engage in anal intercourse, despite the fact that semen itself may be immunosuppressive in some circumstances. And gay men have been doing this for centuries with no dire results.
Isn't the point really that an infectious agent has been introduced into the gay male population and, because gay men tend to have sex with each other, is spreading there? There is nothing inherent in being gay that promotes this disease; after all, the number of cases within each high-risk group appears to be increasing at the same rate. AIDS is not transmitted because of who you are, but because of what you do. From the beginning, 17 percent of AIDS patients have been IV drug users, and at least 6 percent have never fit into any of the high-risk groups. In New Jersey, the majority of AIDS patients are IV drug users. By concentrating on gay and bisexual men, people are able to ignore the fact that this disease has been present in what has charmingly come to be called "the general population" from the beginning. It was not spread from one of the other groups. It was there.
FRIEDLAND: The majority of our patients in the Bronx are IV drug users, and a quarter are women who have contracted the disease either by using dirty needles or by having sex with infected men.
ANN GIUDICI FETTNER: And the CDC admits that at least 10 percent of AIDS sufferers are gay and use IV drugs. Yet they are automatically counted in the homosexual and bisexual men category, regardless of what might be known - or not known - about how they became infected. In their desire to keep AIDS in its place as a "gay disease," people ignore the fact that in Central Africa, the sexual spread of the disease occurs almost solely among heterosexuals; slightly more women than men are infected. At the university hospital in Kinshasa, the capital of Zaire, three or four AIDS cases are coming in every day. Interestingly enough, in some places where the virus is prevalent, there is virtually no disease. For example, scientists have found that as many as 51 percent of the people in some remote tribes in northern Kenya are infected - but there's no AIDS. They're finding the virus in green monkeys in Zaire as well, yet they don't seem to be sick.
SILVERMAN: It's possible that the virus has existed in animals for a long time and has only recently mutated and begun to infect humans. Or it may have been present in humans in isolated regions of Africa for years. Perhaps it began to spread as more roads were built and people moved to the cities. Today, jet travel can spread a disease around the world almost instantly.
MACDONALD: The outbreak in Western Europe seems to be following the American model: the largest group affected is gay and bisexual men, followed by IV drug users, and then heterosexuals. The number of cases is increasing rapidly, particularly in France and West Germany.
LlEBERSON: What precisely do we know about how the disease is spread?
KRIM: The virus is probably not spread by casual contact - kissing or living in the same household or sitting near someone on a bus. But it is transmissible sexually and through the blood. It is less contagious than hepatitis or flu.
SILVERMAN: People seem to think AIDS is some virus from a Steven Spielberg movie - a supervirus. Well, it isn't. Soap and water destroy it. In fact, LAV/HTL V-III is sexually transmitted precisely because it is so fragile.
LlEBERSON: Does "sexually transmitted" mean that a person who has sex with someone who has the virus is likely to get it?
FRIEDLAND: Frankly, we have no idea how likely it is that the virus would be transmitted during any single sexual encounter. Someone may have to be exposed several times to be infected.
STEPHEN SCHULTZ: We know the virus is present in body fluids, but we don't know which of them are effective transmitters. Just because the virus is found in saliva doesn't mean saliva transmits it. Many public health officials have taken the conservative approach and assumed that if the virus is present in any body fluid, every attempt should be made to avoid spreading it around.
FRIEDLAND: To obtain biological proof of how the virus is transmitted, as opposed to epidemiological proof - which is essentially circumstantial evidence - we would have to take infected body fluids, inject them into subjects, and wait for infection to occur. Since this is impossible to do in humans, researchers must find an animal that can become infected with the virus and duplicate the disease. Work in this area began only recently. Today, we can only make admittedly circumstantial assumptions about how the virus is transmitted.
SILVERMAN: Epidemiologically speaking, one could say that semen appears more likely to transmit the virus than saliva. The two factors associated with transmission seem to be multiple sex partners, which suggests that a number of exposures might be necessary, and anal-receptive intercourse, which suggests that semen is a likely transmitter.
FRIEDLAND: The cleaner epidemiologic information derived from transfusion studies confirms that blood can transmit the virus. In some cases, the original blood donors of people who have acquired the disease have been located, and the virus in their blood isolated. These transfusion studies give us our most reliable evidence about the disease's incubation period. The multiple sexual encounters of many gay and bisexual men, for example, or the numerous episodes of needle-sharing among drug addicts, usually make it impossible to determine when infection occurred.
BAYER: Although we can retrospectively trace cases back to blood donors, we don't know how many recipients of that blood did not become infected. Not everyone given a transfusion with infected blood develops antibodies.
SILVERMAN: Retrospective studies of any disease usually give us fairly definite information about transmission. But with AIDS, we're just now building that body of information.
MACDONALD: Still, there are no data suggesting the virus is transmissible by casual contact or through saliva. If it were, we would undoubtedly be seeing a markedly greater number of cases than we have so far.
SILVERMAN: And the numbers of AIDS patients, though doubling every year, are doubling within the high-risk groups. No mothers of AIDS patients have gotten it, for example.
KRIM: An even stronger argument is that there has been no recorded transmission of the virus between AIDS patients and medical personnel.
SILVERMAN: The point is that AIDS is predominantly a sexually transmitted disease, and that means it's a behavioral disease. People who don't do certain things very likely will not get it. People who do do certain things risk getting it.
KRIM: This means that the infection - and therefore AIDS - is essentially preventable, not by medical means as yet but by changing how people behave. People must be taught how to protect themselves from getting the virus. That is the great failing of our government: it has made no real effort to provide this education.
ALLAN M. BRANDT: That raises the question of how very rational fears of what is after all a terrifying disease can be separated from the powerful, irrational fears that are spreading across the country. Despite the scientific uncertainty, emerging epidemiological data tell us a good deal about why we need not fear AIDS under certain circumstances. Yet this information has gotten lost in the public portrayal of the disease.
SCHULTZ: Look at the press, which has been pointing its finger at prostitutes and warning heterosexuals that they run a "grave risk" of catching AIDS. The cover of Life proclaimed "Now No One Is Safe from AIDS" in big red letters. Meanwhile, the government warns that everyone must he careful, which, while literally true, tends to worry peuple unduly. The evidence that AIDS is spreading outside the high-risk groups, beyond the percentage of "noncharacteristic" cases we've always seen, is negligible.
MACDONALD: Only because the gay aspect of the disease has been so sensationalized can people say, four years after the epidemic broke out, my goodness, heterosexuals are at risk too. The disease seems to have "broken out" in the general population, but that's only because we have not really talked about AIDS before - its epidemiology, modes of transmission, and so on. Before, when discussing AIDS, we were really talking about attitudes toward homosexuality, or something else altogether.
SILVERMAN: Only one percent of all AIDS cases can definitely be traced to sexual transmission between men and women. But this might be changing. Eighty-six percent of AIDS patients in San Francisco are homosexual or bisexual men who are not IV drug abusers - as opposed to 59 percent in New York City. But the percentage of lV drug abusers in San Francisco who are infected seems to be rising. If a man has sex with a woman who has contracted the virus by using dirty needles, he could become infected. So we may start seeing more cases among heterosexuals in San Francisco.
FETTNER: The press keeps talking about hooker show they get it from dirty needles and spread it to their customers. But do we know exactly how they spread it?
FRIEDLAND: We know the virus is transmissible through blood, and almost any body fluid can be contaminated by blood. A woman's gums may be bleeding when she kisses her partner; maybe cells are exchanged that are infected with the virus. Or her vaginal fluids may contain it. At this point, we just don't know. I treat many women who have contracted AIDS through sex with men, and as far as we can determine, these women seldom engage in anal-receptive sex. Many have longstanding relationships with a single infected person. A simple formula might be: the more frequent the sexual activity, gay or straight, with an infected partner, and the more body fluids exchanged, the more likely it is that the virus will be transmitted.
SILVERMAN: The clearest rule is: prevent the exchange of body fluids. Those with multiple partners - and especially members of high-risk groups - should use condoms, and use them properly. People in these groups can have safe sex so long as they are honest with each other and take the proper precautions. And there are certainly erotic and exciting sexual activities that do not entail an exchange of body fluids. Use your imagination.
FETTNER: Use your imagination? What kind of educational message is that?
SILVERMAN: Well, statistical studies, particularly those being conducted in San Francisco, show that this advice is being followed. We hear constantly about the "promiscuity" of gays and the shocking bathhouses, but few people mention the phenomenal change in behavior that has taken place within the gay community since the AIDS crisis began. The rate of rectal gonorrhea has plummeted, falling more than 75 percent.
LlEBERSON: What are the prospects for developing a cure or an effective treatment for this disease?
KRIM: There are three rather disquieting obstacles to developing an effective vaccine or treatment. First, LAV/HTLV-III is a retrovirus, a very particular kind of virus unknown in humans until a few years ago. Such a virus has genetic material composed of double-stranded
RNA that must be transcribed into DNA by a viral enzyme. The viral DNA is then integrated into human chromosomes. Once it is there, nothing can remove it - infection is lifelong, and the virus reproduces at a very rapid rate. At best, treatment might succeed in suppressing multiplication of the virus. Second, although this virus induces the production of antibodies, these antibodies almost never succeed in neutralizing it. The immunological reaction against infection is not generally effective.
Finally, this virus, like flu viruses, seems to mutate - to modify its genetic structure - frequently. This raises the question of whether an effective vaccine - or at least a single effective vaccine - can ever be developed. It's quite possible that an antibody that works against one strain of the virus might be powerless against another strain, which is exactly the difficulty we have in developing a flu vaccine.
So LAV/HTL V-III infects a person for life; it remains infectious despite the presence of antibodies produced to combat it; and developing a vaccine will be very difficult, and may be impossible. And we have learned through bitter experience that treating patients in the terminal stage of this infection is futile.
FRIEDLAND: I wince when I hear that. I spend most of my time treating patients; to say we have no cure is not to say we do nothing. We are unable to cure many diseases; so we concentrate on palliating them. We do many things to improve the quality of life of AIDS patients. Every day we learn more about how to recognize the opportunistic infections early and to treat them effectively.
KRIM: But AIDS is a lethal disease, and at this point most patients die of it within a couple of years. There is now a clear consensus among researchers that treatment aimed at suppressing the multiplication of the virus and at stimulating and restoring the immune system should be undertaken earlier, not only prior to the development of the cancers and opportunistic infections but prior to the development of any significant immune deficiency - if possible, immediately after infection with LAY/HTL Y-Ill.
But there is a problem-the current pharmacopoeia is devoid of drugs that can do these things. Some rare drugs such as HPA-23, Suramin, and Ribavirin seem to inhibit retrovirus multiplication in animals or in the laboratory, but investigators have only begun to study how effective they might be against LAY/HnY-III in man - and how toxic they are. Meanwhile, drugs able to restore immune functions simply don't exist. One would expect that very assertive and organized research into these areas would be under way. Unfortunately, our government in its wisdom has done little or nothing to fund such research. Work on antiviral drugs was started only this year, and the government has made available very, very little money to pay for it. Research on the use of interferons, which are known to be effective against retroviruses in animals, has been left entirely to the pharmaceutical companies that produce them.
MACDONALD: It's obvious that the government was caught off guard and is still off guard. The federal government in general - and the Public Health Service in particular - is not equipped to respond to such a devastating epidemic. That has not really changed since the polio epidemic in the 1950s. Not enough money is allocated, and the various agencies of the Public Health Service compete for the money that is, frequently duplicating work or not performing it at all because they misunderstand which agency is supposed to do what. I hope the AIDS epidemic will point up the extent to which we need to examine the role of our government in public health emergencies.
When a disease is controversial or politically sensitive, politicians and federal officials are even more hesitant to take an assertive role. From the beginning, AIDS was a political issue more than a medical one, and it remains so today. When officials discuss AIDS, they are usually not discussing a disease but the people who suffer from it, and how voters react to it.
FETTNER: Federal agencies have been forceful in leading efforts in prevention, screening, and treatment of other diseases, yet they have done very little with respect to AIDS. The government has done literally nothing in the way of education, and yet, as Dr. Krim said, our only defense against this disease is to educate people about how they can avoid infection. The Department of Health and Human Services has allocated only $120,000 this year for public education - down from $200,000 last year.
MACDONALD: The truth is that the federal government does not want to be in the position of talking about gay sex acts - which is what it would have to do to mount an effective educational campaign.
MATHEW J. SHEBAR: In fact, twenty-four states still have laws prohibiting sodomy, specifically the act of anal penetration. So the federal government might be condoning criminal activity in those states if it began telling men to use condoms when having sex with other men.
SILVERMAN: The government only has to provide funds so that communities can educate their people about AIDS in whatever way they deem most effective.
MACDONALD: But that presupposes the government believes it has a role in these matters which it apparently does not. The standard procedure of the Public Health Service when it is confronted with an epidemic is to determine the cause and develop a vaccine. The federal government has not taken responsibility for funding AIDS treatment or education because these elements don't appear in that model. Up to now, it has responded to AIDS by working to discover its cause and by pushing forward a crash program to develop a vaccine. Even the
greatly increased funds that the government proposes to spend on education next year will be administered by officials who do not believe in the efficacy of prevention.
Yet consider the cost of this epidemic. According to the CDC, the average cost per diagnosed
case is about $140,000. For the first 9,000 cases, the cost in health care alone has been about $1.25 billion, some 60 percent of which has been public money. And it is sure to cost much more this year.
SILVERMAN: The cost per case in San Francisco is probably half that figure. San Francisco is
spending about $4 million this year on outpatient services for AIDS patients. The idea is to reduce the hospital stay and care for patients in their homes with skilled nurses.and other support staff. The average hospital stay in San Francisco for an AIDS patient is about eleven days, which is much less than in New York. This system reduces total AIDS expenditures immensely. But it's enormously costly for the local government, because charges are not reimbursed by Medicaid or other programs. Yet the federal government considers the provision
of these services a local responsibility, even though they reduce total costs. Meanwhile, New York and San Francisco, because of the quality of care they provide, now attract AIDS patients from across the country.
BAYER: The fact is that our health care-system doesn't provide adequate care for large numbers of people. How can we provide money for longterm care for AIDS patients? We can't provide it for the elderly or the homeless.
SHEBAR: The whole question of federal involvement is a double-edged sword, particularly when it comes to prevention programs. Asked how to "prevent" AIDS, the man on the street
might demand rather draconian measures. Some right-wing spokesmen have already advocated the mandatory quarantine of AIDS. patients. Officials in the Reagan Administration
might believe they're being rather evenhanded when it comes to AIDS: Well, they say; we may
not be giving much money to those gays for education, but at least we're not locking them up, as Jerry Falwell keeps demanding.
SCHULTZ: Those on the radical right aren't the only ones talking about quarantine; so are many people in the public health profession.
FETTNER:. Quarantine is not some sort of paranoid gay fantasy. James Mason, head of the CDC and acting assistant secretary for health, has conceded that it has been discussed by federal officials.
KRIM: A quarantine would not only be terribly cruel and harmful, but also completely counterproductive. After all, the only people who could be forcibly committed to a hospital are diagnosed AIDS patients showing clinical symptoms. Yet these people are very ill, and they are usually not interested in sex. And the more advanced their condition, the less infectious they become.
The people most likely to infect others with the virus are those who have been infected but do not evidence symptoms. They think of themselves as healthy; for all we know, they may never get sick.
SILVERMAN: Besides the obvious ethical issues this raises; if we tried to lock up all those infected, we would have to imprison upward ot.a million people, most of whom are not sick. And how would we identify the infected people? My God, we would have to give everyone in the country a blood test, and isolate all those who tested positive - some of whom, of course, would test false-positive.
BAYER: It's clear mass quarantine couldn't work, at least not in a way that would benefit public health; but it would have a profound effect on civil liberties. Many less extreme measures have also been discussed, and because they are more plausible, they are even more troubling.
For example, some have proposed mandatory screening for AIDS in schools, in the military, in places of employment. It's not unreasonable to expect that many who are deeply concerned about public health - and not necessarily rightwingers - will begin to discuss this possibility. If nothing else, such a discussion might help us confront the fact that in some sense we have lost the ability to consider "the public" when we debate public health issues. The concern for privacy, civil liberties, and constitutional rights has become so pre-eminent in the past few decades that it is impossible to determine at what point these individual protections might be compromised in the name of public health.
SILVERMAN: I disagree. Officials must simply look at these issues logically and intelligently. If they do, they'll see, for example, that there is no real point in mandatory mass screening. The disease is not casually spread, so there is no reason for an employer to screen his employees, except perhaps to avoid paying out insurance money. The military already screens all blood it collects on its bases. Comrnanding officers are informed when someone tests positive tor LAV/HTLV-lIl - apparently not for health reasons, but so he may be discharged for being a homosexual.
SHEBAR: If the military discharges someone because he has AIDS, it has violated the law. But if it discharges someone - on the basis of the same test - because he is a homosexual, it's within the law.
MACDONALD: But the test is often inaccurate, and in any case, a positive test doesn't indicate a person has the disease. It only shows that the immune system has been exposed to the virus and has built up antibodies to fight it.
In New Jersey it was recently proposed that anyone giving blood whose antibody test was positive be informed, and that blood banks be required to report test results to the state. But certainly the government should intervene only when it can do something constructive. What can it do for someone who tests positive?
BAYER: It is not unreasonable to assume that once public health officials notified someone that he had tested positive, he would have a moral obligation to behave prudently when he had sexual contact with others.
MACDONALD: But a test result is not required to give that message to members of high-risk
SILVERMAN: Well, it definitely makes that message more effective. That's why I'm in favor of people In high-risk groups - gays and bisexuals, IV drug abusers - taking the blood test. Someone who has a positive test can at least come in for counseling. What do we tell him? First, the evidence indicates that a large percentage of people carrying the virus will nor get AIDS. Second, there are steps you can take to help ensure that you stay healthy. Above all, build up your immune system: follow a good diet, get a lot of rest and exercise. Most important, make sure you don't expose yourself to the virus again - and, for God's sake, don't expose anyone else.
To someone who tests negative, we can offer advice on how to stay that way: build up the immune system and behave in ways that don't increase the risk of exposure. And, as Dr. Krim
mentioned, if we begin treating people at an earlier stage of the infection, we may be able to accomplish something with treatment.
LIEBERSON: What's the possibility of the test indicating someone has the virus when he doesn't?
FRIEDLAND: Any test has its "false-positive" rate. In screening IV drug users in New York City - up to 80 percent of whom may have the virus - the test should be pretty reliable. But if you're screening a population that has a relatively low frequency of infection, the test's false-positive rate may actually be higher than the true rate of infection of the group. So a given positive test is more likely to be false-positive than it is to indicate infection. This is why it's problematic to screen large numbers of people who are unlikely to be infected.
BAYER: But more elaborate confirmatory tests like the Western Blot have been developed, and they are very reliable. When such tests are used, the rate of false-positives is negligible.
SCHULTZ: However accurate the test, many argue that if effective treatment for the disease isn't available, then screening people is immoral. Between the wars, the United States screened much of its population for syphilis - but it had only a very ineffective therapy to offer.
BRANDT: Premarital screening for syphilis has been mandatory in most states for years, and we know now that test results in the past were often false-positives. Yet many people who tested positive were not allowed to marry until they received highly toxic treatment.
It's interesting that Dr. Silverman said we should tell people who test positive to behave in a certain way, and people who test negative to behave in a certain way - the same way, in fact. That suggests to me that the main purpose of testing people would be to frighten them, rather than to offer them effective treatment. Government officials, physicians, and others have traditionally hoped that fear of venereal disease would prevent it - by preventing "illicit" sex. But historically, fear has never been enough to prevent venereal disease.
SILVERMAN: Well, fear has been one hell of an effective motivator in the gay community. Yet our statistics show that the change in behavior has been quantitative rather than qualitative: people have reduced the number of their sexual partners, but some have not changed their sexual activity, at least not to the same extent. But sex with three people today may provide as much exposure as sex with a dozen people did three years ago, because so many more gay men are now infected - one out of two in San Francisco.
I concede that screening - and I mean voluntary screening, not rnandatory - can be misused. But I believe it can be effective as an educational tool - just like showing a smoker an X-ray of his lungs.
SHEBAR: Behind such cynicism must lie the hope that everyone in the gay community will test positive - what a great motivator that would be! Among our clients at the Gay Men's Health Crisis Center who committed suicide, three times as many were suffering from ARC as from AIDS itself. It's the waiting, the checking for symptoms every day, that's so terrible. Every cold seems like a sign of the end. The blood test does not diagnose disease. It does not suggest any treatment. And it is extraordinarily dangerous in its implications for civil rights. Last summer, I got a call from a man who had been given an annual physical by his employer - a Fortune 500 pharmaceutical corporation - and had been tested without his knowledge for the LAV/HTLV-III antibody. His ernployer - not a phvsician - called him in, told him he had tested positive for the antibody, and summarily fired him. This man had no idea what the test meant. I helped him get his job back and have the test result deleted from his medical records.
SILVERMAN: To prevent such abuses, California just passed a law forbidding use of the test in screening employees or insurance applicants.
MACDONALD: The implications of mass screening are frightening. When a bureaucracy like the Public Health Service is given a very simple task- and screening blood is a very simple task - it tends to reduce a complex phenomenon to very simple formulas: if someone tests positive, thus and thus is true; if someone tests negative, thus and thus is true. The bureaucracy doesn't pay attention to whether anything is really being accomplished. Look at the Red Cross's policy of sending people with confirmed positive results to their physicians. Their physicians can't do anything.
FETTNER: The Red Cross is also putting the names of those who test positive on a list.
BAYER: Blood banks always maintain something called a deferral directory, which lists anyone whose blood has been rejected for medical or other reasons. Its purpose is basically to screen out blood that may not be safe.
Of course any kind of list, whatever its purpose, presents a problem. The Red Cross list presents a particular problem for those who believe that individuals should not be notified of positive results because they might be terrified by information that is not necessarily accurate.
At present, a blood donor is notified only if both the ELISA screen test and the confirmatory Western Blot test are positive. If someone tests positively on the ELISA but negatively on the Western Blot, his blood is not used and his name appears on the deferral list - but he is not notified. This list presents the problem, especially since no computer list can be absolutely confidential. Are health care professionals ethically bound to tell people their names are on the list, even though it has not been confirmed that they have the antibody?
Almost everyone acknowledges that many gay men want to take the test, whether it will mean their names end up on a list or not. That's why people are worried that members of high-risk groups will flock to donate blood in order to get the test results, and thereby risk infecting the blood supply. So now we are in the strange position of spending public money to set up testing centers while acknowledging that the test can't give much useful information.
SHEBAR: Creating alternative centers has to be done. But gay leaders should be sending out a clear message that people should not take the test, both to ensure that high-risk people don't flock to blood banks and to protect their rights.
SILVERMAN: In California, people can take the test anonymously, which is one way to mitigate the confidentiality problem.
SCHULTZ: Anonymous testing intended to let people find out their antibody status, so that those who have the virus can choose to have sex only with others who have it, might be effective as a preventive measure. But the program being tried on the West Coast, and apparently favored by the federal government, uses testing as a means to trace the sexual contacts of those who are infected, and to frighten them into severely curtailing their sexual activity. As Mr. Brandt said, this is the traditional approach to VD. But without an effective treatment to offer, the chances of getting people to cooperate with such a program are dubious. Government's ability to alter sexual behavior has always been very limited.
LIEBERSON: We heard earlier that some observers expect 30,000 cases of AIDS by the end of 1986. What kind of social response can we expect in the next few years?
MACDONALD: There will be a wave of hysteria as people become aware of the scope of the epidemic.
BAYER: "Hysteria" gives the impression that people's fears are utterly groundless, but 30,000 cases of a lethal, infectious disease seem a rather good reason to be worried. At the least, AIDS will generate a crisis in our health care systems. The isolation rooms at municipal hospitals like Bellevue are already devoted almost exclusively to AIDS cases.
SHEBAR: If the progress of this disease is not impeded, it will devastate our cities. The future of AIDS is already here; it exists in our prisons. In these closed areas, where hygiene is poor, un-consenting homosexuality rampant, and IV drug abuse widespread, the disease is spreading unchecked. In New York State prisons, about 200 AIDS cases have already been reported, and the state has announced plans to spend $7.5 million on a new AIDS prison treatment center; as it is, patients are literally chained to their beds in prison hospitals. Our prisons can be thought of as a sort of dirty mirror of our urban centers.
BRANDT: But how will the government and the press address people's fears! If they are addressed in an irrational way, they could lead to policies most people would regret. The main problem is ignorance. We understand, for example, that a positive blood test doesn't mean someone has AIDS. But the press has distorted that fact enormously. And such distortions create an atmosphere in which scapegoating thrives.
BAYER: Although some AIDS patients have lost their jobs or lost their insurance, a well- organized group of lawyers and other advocates from the gay community and civil liberties groups has thus far managed to keep in check what might have been a profoundly irrational public response. The CDC has even negotiated with gay leaders about the conditions under which AIDS research would be done. But as the cases mount, will such cooperation begin to break down? How many "liberal" values - the right to privacy and confidentiality, the civil rights won during the past decade or two by vulnerable minorities - might be eroded or even swept away by hysteria over AIDS?
MACDONALD: The high-risk groups - primarily gay and bisexual men - have borne the brunt of not only the disease itself but the political costs of marshaling a measured public response to it. Believe me, we would like nothing better than to withdraw from the role of principal advocat for the victims of this disease and become participants in a general response. The gay community has been unfairly cast as the adversary from the beginning. AIDS was dubbed "the gay plague," which evokes the image of irresponsible, promiscuous deviants living on the fringes of society and infecting the body politic with a dread disease. That conception of AIDS prevails in most of this country to this day.
BAYER: But the disease does constitute a plague for the gay community, especially if as many as 20 percent of those with the virus will go on to develop the disease.
BRANDT: The point is that AIDS is an important social problem. The press screams that now babies are getting it - as if the gays had it first. In doing so, the "innocent" victims are divided
from the "guilty." Such an attitude has been a traditional part of our reaction to venereal disease. In the early twentieth century one spoke of venereul insontium - children who got it congenitally, wives who caught it from unfaithful husbands. There has always been a desire to separate "innocent" from "guilty." But all are victims.
LIEBERSON: Perhaps one way of looking at that distinction follows from Dr. Silverman's point that AIDS is a behavioral disease - certain people put themselves at risk and do so knowingly, while others don't. A baby doesn't. Neither does an unconscious person who has been in an auto accident and needs a transfusion.
SILVERMAN: If somebody behaves in an unsafe way today, he is not innocent. But the fact that gay men had sex without taking precautions five years ago doesn't make them guilty of anything. This disease could conceivably have been spread primarily through heterosexual activities - would that have made the general population "guilty"? Everyone was innocent - until we knew how to protect ourselves.
MACDONALD: We should realize, however self-serving this sounds, that were it not for the gay community fighting this tooth and nail with the government and everyone else, we wouldn't know what we do now - there would not be a response to AIDS.
FETTNER: That's indisputable. Even today there is no highly placed official in the federal government who realizes the need to educate people about the disease.
SHEBAR: Margaret Heckler, secretary of health and human services, said last April that she fears it's spreading to "the community at large." I call her the secretary of health and heterosexual services.
SILVERMAN: But there is a Catch-22 in the gay community's response. Gays have been the only ones loudly advocating a strong public effort to fight the disease - but in so doing they have attracted all the attention and all the animosity.
SHEBAR: Yet as the AIDS panic grows and gay leaders present themselves more and more responsibly, more people may realize that gays are a minority whose rights deserve to be legally protected. And the millions of closeted homosexuals in this country might be encouraged to come out and declare themselves gay.
FRIEDLAND: I want to point our that among AIDS patients, gays alone have the power to organize. Although IV drug users represent almost a fifth of those with AIDS nationwide, they obviously can't demand help from the government as an organized group.
BRANDT: In Canada, where sanitary needles are widely available, the number of IV drug users with AIDS is very low. But in the United States, addicts share needles - and transmit disease - because it is so difficult to obtain them. By making it easier to obtain sanitary needles, the government could take a decisive step toward reducing the spread of the virus among IV drug users - and their sexual contacts. Yet despite all the hysteria, many people still dismiss the crisis by saying: "It's only gays and drug addicts. Who needs them anyway?"
FRIEDLAND: Those people should be concerned, if for no other reason than that IV drug users are the most likely people to transmit AIDS outside their own at-risk group.
FETTNER: Another problem in rallying public concern is the large number of blacks with the disease. Nationwide, a quarter of all AIDS patients are black.
BAYER: That the groups affected are largely disenfranchised raises that question again: How does one fashion a vigorous public health response while at the same time acknowledging the importance of protecting privacy and civil liberties? Frankly, I don't believe privacy and civil liberties are compatible with such a vigorous response. If we continue to claim that they are, we may find ourselves with policies that ignore civil liberties altogether.
MACDONALD: We must remember that when public health officials propose measures like screening, they are in effect proposing to a population already outside the law that something else be taken away.. Homosexuals are an unprotected class, and you are suggesting doing something to this class in order to protect "the public's" health.
If Congress passed laws assuring the civil rights of gay people, or even mandating that all test results be confidential, that would be a different situation. But that is not the situation today.
BAYER: The cruel irony is that in the absence of those political guarantees, the gay community is put in the position of hesitating to agree to the very research necessary to respond to the disease effectively.
MACDONALD: I'm not aware of many instances where the gay community has resisted research. But it should be pointed out that most public health officials are oblivious to the true situation of gay people. A while back, a high-level Public Health Service official said to me: "Frankly, the best response to th is disease would be for all gay men to settle down in monogamous relationships." This man seemed to believe that two gay men in Omaha could simply get married, retire to the suburbs, and drive their 2.4 cars happily for the rest of their lives.
SHEBAR: Today, gays in San Francisco are protected from the disease spreading through the bathhouses. Those bathhouses have been restricted, and most gays cooperated when the restrictions were imposed. Why? Because San Francisco has a gay rights bill and openly gay elected officials; gays there know that the director of health who imposed the restrictions, Mervyn Silverman, is not an enemy of gay people.
In New York City, there is no gay rights bill, there are no openly gay elected officials, Because of this, any regulation of the bathhouses has been resisted - I believe unwisely.
BAYER: Yet even in San Francisco, the gay community was split about closing the bathhouses.
SILVERMAN: That is a very complex issue. The bathhouses have served as social centers and, for some, as refuges; they are seen as symbols of gay liberation. Even though only 5 percent of San Francisco's gay population regularly frequented these establishments, there was great fear among gays that closing them would lead to increased oppression nationwide. Our major goal was to motivate people to change their behavior, regardless of location. We couldn't risk letting a political controversy over the bathhouses overshadow the central message. We realized that message must be getting across when the VD rate began to drop dramatically. We then felt we could move against the baths. San Francisco was spending over $6 million to reduce the spread of this disease while bathhouse owners were making a profit by facilitating high-risk activities. After the baths were closed, more than half of my mail from the gay community supported the action.
LIEBERSON: What influence will the disease have on sexual mores and practices?
SILVERMAN: As the number of cases keeps growing, there will be a revolution - some would say a counterrevolution - in sexual attitudes and behavior. It won't bring us back to the Victorian era, but people will get to know each other a lot better before they jump into bed. After all, a considerable change in behavior accompanied the herpes scare, and herpes doesn't kill.
FETTNER: I see that change happening in my own family. My nineteen-year-old son is very gun-shy about sex. All of a sudden it may be deadly,
SHEBAR: I have a great hope that this epidemic might accomplish something magical - free gay men from the burden of anonymity. Gay men can maintain that anonymity only when they have their sex in underground places with people they don't know - or when they stay closeted, afraid to reveal who they really are. But because of AIDS, anonymous sex in the gay community has already decreased.
It must be recognized that there is a direct correlation between anonymity and oppression. When a parent discourages his gay son from becoming involved with another man; when a church refuses to accept gay congregants; when an employer says, "Just keep it out of the office" - what they are all really saying is, keep it in the bathhouses and backrooms, the places where one runs a higher risk of being infected, I think AIDS will lead gay people to rebel against this sort of oppression and to become more visibly committed to their gay identities and to their partners. Quite frankly, I believe gay marriage will be legal by the turn of the century. That couple in Omaha may be able to settle down in the suburbs someday.
BRANDT: I've heard too often that some disease is just what society needs to discourage prorniscuity and bring about meaningful, caring relationships. The sexual counterrevolution didn't come with herpes, and it won't with AIDS - no matter how much some people hope it will.
FRIEDLAND: There is no evidence that AIDS has brought about any substantial change in the habits of drug users or caused a decrease in their numbers. In New York City there are 200,000 IV drug users, and anywhere from 40 percent to 87 percent of them - depending on which study you look at - are infected with the virus. Every day more young people are introduced to drugs, and exposed to the virus. There has been almost no response to this problem, either by community groups or public agencies.
KRIM: I don't understand why organizations concerned with family health are riot worried about AIDS. Clearly we have reached a stage where there should be programs in every high school and college to explain to young people the dangers of drug abuse and casual sex. What exactly are we waiting for?