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4 Opportunities for Altering the Course of the Epidemic Because of the lag time up to four years or longer in the develop- ment of AIDS after HIV infection, approximately 50 percent of the AIDS cases diagnosed in 1991 will be in persons who are infected now but do not yet have AIDS (Morgan, 19861. Thus, about half of the AIDS cases diagnosed in 1991 and a growing proportion after that can potentially be prevented. It is in this course of action that the greatest opportunities for altering the course of the epidemic lie. As discussed in Chapter 6, the committee believes that a vaccine against HIV infection is not likely to be available for at least five years and probably longer. Drugs are now being tested in the hope that one can be found to safely arrest the progress of HIV infection. Whether that search will be totally successful is highly uncertain. Thus, neither potential vaccines nor drug therapies offer much hope in the near future for altering the course of the epidemic. It is necessary in this situation to maximize the use of available means of controlling the epidemic. In a few short years a remarkable amount has been learned about HIV and how it is transmitted. This solid evidence provides the basis for reasonable decisions about actions that must be taken to mitigate the devastating impact of HIV infection. The challenge to those entrusted with fashioning policies to protect the public health in this regard is massive (Jonsen et al., 1986; Levine and Bermel, 19851. There is no agent currently available to treat the underly- ing disease process, no one has been known to recover from AIDS, and those exposed to the virus must be presumed to be chronically infectious. 95
96 CONFRONTING AIDS Furthermore, the main groups at risk are subject to social stigma and private discrimination, which complicates the picture for health officials seeking to identify those who are or may become infected and thus capable of transmitting the virus. Traditional public health responses to infectious diseases have included identifying those who harbor the infection. Among the methods used to accomplish this are testing or screening, reporting cases and compiling registries of those who are infectious, and isolating, when necessary, the persons capable of transmitting infection. Such programs may rely either on the voluntary compliance of those at risk or on compulsory measures. Because compulsory measures compromise liberty, autonomy, and pri- vacy (especially when such fundamental behavior as sexual activity is at issue), they must be carefully considered in light of the potential public health benefit. Many such programs have historically been shown to be invidious, ineffective, or discriminatory (Brandt, 19851. This chapter describes the opportunities available for protecting individuals from HIV infection in a society that values privacy and civil liberties. PUBLIC EDUCATION For at least the next several years, the most effective measures for significantly reducing the spread of HIV infection are education of the public and voluntary changes in behavior. There are many social ills for which public education is prescribed as a cure, especially where there are few specific responses available. Education can sometimes be a soft substitute for hard action. In contrast, public education about HIV infection is, and will continue to be, a critical public health measure, even if a vaccine or drug becomes available. Education in this instance is not only the transfer of knowledge but has the added dimension of inducing, persuading, and otherwise motivating people to avoid the transmission of HIV. While it would be unrealistic to believe or claim that the spread of HIV infection is likely to be stopped by educational efforts to induce behavioral change, the efforts can be entered into with a strong degree of conviction and hope. Carefully monitored preventive interventions for other health problems (e.g., to reduce smoking or heart disease or to improve diet) show that these can be effective when pursued intensively (Farquhar et al., 19841. The incentive to avoid risk of infection with HIV should also be strong given the higher probability of adverse outcome (if infected) and the closer temporal connection between the behavior and the threat to health. Hence, education to prevent HIV infection can be strongly expected to bear results. In addition, by accompanying it with behavioral research directed at improving the knowledge of how to
ALTERING THE COURSE OF THE EPIDEMIC 97 induce more effectively the desired behavioral changes, its effect can be heightened. The present level of AIDS-related education is woefully inadequate. It must be vastly expanded and diversified, targeted not only at the general public but at specific subgroups, such as those in which significant transmission can be anticipated, those in a position to influence public opinion, and those who interact with infected individuals. What Should Be the Content of Public Education? The epidemiology of AIDS clearly demonstrates that unprotected sexual intercourse (receptive anal or vaginal intercourse), the use of shared needles and syringes, and the transfusion of blood products contaminated by HIV represent the greatest danger of transmission of the virus. Discussion of alternative sexual and other behaviors that provide a measure of protection against transmission must be conveyed to those targeted for AIDS education (Darrow and Pauli, 19841. If behavior modification is the goal of education about AIDS, the content of the material presented must address the behavior in question in as direct a manner as possible. Educators must be prepared to specify that certain sexual practices are activities in which there is a very high risk of HIV transmission. Admonitions that one must avoid "intimate bodily contact" and the "exchange of bodily fluids" while simultaneously averring the safety of "casual contact" convey at best only a vague message. For instance, they may be understood as implying that one must avoid all sexual activities, a program that few will be willing to follow. People also need reassurance that certain sexual practices involve little or no risk of infection. There has been considerable debate among health professionals, public health officials, and homosexuals about what exactly constitutes "safe sex" and how best to convey information about the relative risk of various behaviors (Handsfield, 19851. Many have argued that it is more accurate to speak in terms of "safer sex," because the unknowns are still such that it would be irresponsible to certify any particular activity as absolutely safe. Much of this argument will be moot as a more sophisti- cated understanding of modes of transmission is gained from research and studies under way in this country and abroad. Condoms have been shown under laboratory conditions to inhibit the transmission of HIV, as has been demonstrated with at least two other viruses of approximately similar size: cytomegalovirus and herpes simplex virus type 2 (Conant et al., 19861. More needs to be known, however, about the practical efficacy of condoms in blocking sexually transmitted diseases spread by anal intercourse. Is anal intercourse more
98 CONFRONTING AIDS likely to break or tear condoms? Does the type of lubricant affect the integrity of the membrane? Are certain materials more effective than others? Prudishness about the use and promotion of condoms has inhibited their use. They need to be widely available in establishments that have the potential to foster sexual liaisons, such as bathhouses and singles bars. They should also be readily accessible in less sexually oriented establish- ments, both to maximize their availability and to minimize the stigma associated with their use. Sexually active youth (both homosexual and heterosexual, male and female), being less likely to have been infected with HIV, have the most protection to gain from the use of condoms. Increased condom use has been demonstrated following explicit, fo- cused educational campaigns in the past (Darrow, 19741. More needs to be done (Goldstein, 19861. Programs designed to encourage the use of condoms must take account of different motivational forces underlying their use as contraception versus their use in preventing sexually trans- mitted diseases. Campaigns to encourage use of condoms must also overcome people's belief that they diminish sexual pleasure or at least make them aware of the benefits in such a trade-o~. The increased availability of condoms probably will raise concerns about encouraging sexual activity by young people who are not sufficiently mature. Such concerns, while understandable, are overshadowed by the dire conse- quences of HIV infection. An integral aspect of an education campaign must also be the wide dissemination of clear information about behaviors that do not transmit the virus. The public must be assured that ordinary standards of personal hygiene that currently prevail are more than adequate for preventing transmission of AIDS even between persons living within a single household; transmission will not occur as long as one avoids the relatively short list of dangerous sexual and drug-use practices that have been identified. Unreasonable alarm about so-called casual contact with indi- viduals perceived as possibly infected with HIV has produced many needless instances of discrimination and distress in the workplace and elsewhere (Bayer and Oppenheimer, 19861. There remain persons so misinformed about the relationship between blood transfusion and AIDS that they are afraid to be blood donors, much less blood recipients. Polls have shown that as much as one-third of the general population believes that AIDS can be acquired through blood donation (Engel, 1986~. i! The currently available evidence indicates that there is considerable gnorance of the ways in which AIDS is transmitted. Surveys document substantial fractions of American adults who believe incorrectly that AIDS can be transmitted by such means as a sneeze or by sharing a drinking glass (Eckholm, 1985b). Public education programs must aim at
ArTERING THE COURSE OF THE EPIDEMIC 99 reducing this ignorance both in the general population and in the groups that will be particular targets of public education those at highest risk of contracting or transmitting the infection. In this regard, the committee is concerned about the Centers for Disease Control directive that empanels local review boards to determine whether materials developed for AIDS education are too explicit and in violation of local community standards- this is the so-called "dirty words" issue (Medical World News, 1985~. The result of such a process could be to cut off frank, explicit information from areas where it is needed the most in regions outside those urban centers that have large concentrations of homosexual men and IV drug users Her O`xI~rPnP~Q of the. ~n~.~.ific..~ of HIV transmission is already high. ~ v 1 1 ~ ~ ~ ~ ~ v ~ ~ _ ~ ~ ~ ~ v ~ ~ ~ ~ ~ _ ~ r ~ The information media's coverage of AIDS has been extensive, and it has been not always easy to distinguish between urgency and alarm. Public officials have taken steps to allay unreasonable fears for example, Margaret M. Heckler, then Secretary of the U.S. Department of Health and Human Services, was publicized shaking hands with an AIDS sufferer and donating blood. Yet such constructive efforts are undermined by media exaggeration. Writers and editors torn between the dictates of accurate reporting and standards of good taste in family newspapers, magazines, and on televi- sion have described modes of transmission euphemistically. Although occasional stories in major newspapers discussed the relative risks of receptive anal intercourse in so many words early in 1983 (when infor- mation about transmission began to emerge from epidemiologic research), most accounts spoke in terms of "sexual" or "intimate" contact more generally. The picture is changing, even in family newspapers. A review of media coverage of AIDS noted this evolution, as resected in the following quotations from unsigned editorials in the New York Times (Diamond and Bellitto, 1986). · "[The AIDS virus is transmitted] through the exchange of body fluids, as in sexual contact" (August 21, 1985). · "AIDS is transmitted . . . by drug abusers sharing unclean needles or by homosexual relations" (September 3, 1985). · "AIDS is spread in two main ways, anal intercourse and the sharing of unclean needles by drug addicts" (September 15, 1985). EVaginal intercourse now needs to be added to these routes of transmission.] AIDS sufferers can obtain much information about the prospects for new treatments from the lay press alone. Yet the media have sometimes provided a distorted view of hopes for success. This tendency unfortu- nately is abetted by the inclination of some scientists to herald results of
100 CONFRONTING AIDS clinical trials prematurely, sometimes in forums outside the mechanism of peer-reviewed journals (Check, 19854. For those already diagnosed with an HIV-related condition, informa- tion should be available regarding the kinds of treatment and volunteer services available. AIDS sufferers have been desperate for information about the testing of new drugs. Equitable access to drugs being tested in clinical trials will depend in part upon HIV-infected individuals being aware of such endeavors. What Are the Aims of Public Education? Because HIV infection is transmitted by means of only a few specific types of behavior, a prime goal of education about AIDS is to modify or eliminate such behavior. Means must be found to overcome the major obstacles to achieving this goal. In matters of sexual behavior, such obstacles include poorly understood individual attitudes and preferences that may have arisen early in life and become relatively firmly fixed. In dealing with IV drug users, the obstacles to educational success include both the attitudes of users and the laws that affect their conduct. It must be made clear that, short of abandoning the behavior entirely, the use of personal and sterile injection equipment is the only way to avoid participating in the chain of transmission of the virus. The sharing of injection equipment appears to be a ritual among many drug users, perhaps begun because of a lack of ready access to sterile equipment or because of laws proscribing sale and possession of equipment. Research is needed to identify the educational techniques that will be most effective in convincing users of the danger of needle sharing. Also needed are ways to impress women users that infection can be transmitted by them to their fetuses with disastrous results. Another goal of educational activities should be to replace the atmo- sphere of hysteria and irrational fear that is found in some quarters with rational information that will engender a level-headed attitude about the disease and one's own risk of becoming infected with the virus. Since many diverse groups must be educated, an early activity in this campaign must be the training of trainers. A network of individuals who are firmly grounded in the facts of the disease and who are adept at transmitting those facts in diverse settings should be established. Who Needs Education? The most obvious targets for a campaign of education about AIDS are the presently identified high-risk groups: homosexual men, IV drug users, prostitutes, and sexual partners of those in high-risk groups. Some efforts
ALTERING THE COURSE OF THE EPIDEMIC 101 have already been made in this direction, but in general the only efforts with any claim to success have been those conducted by homosexuals through voluntary activist organizations. Many of these efforts have been funded by local homosexual groups themselves. Homosexual men in high-incidence areas such as San Francisco and New York report a decrease both in the numbers of sexual partners and in risky sexual practices. These self-reported behavioral changes are consistent with the lower incidence of rectal gonorrhea reported in these areas (McKusick et al., 19851. Although homosexuals, especially in urban areas, are frequently por- trayed as highly organized and easily reached, it would be a mistake to assume that all men who engage in homosexual activities that may put them at risk perceive themselves as belonging to the homosexual com- munity, read the homosexual press' or listen to homosexual leaders. It is important to communicate broadly the message that specific sexual practices involving infected persons are dangerous, not that homosexual men are at risk. Beyond the segments of the population that are at high risk of infection, many other groups must receive education about AIDS. Heterosexuals, particularly those who have multiple partners, must be made aware of the risk to them. Health care professionals must acquire and constantly update their store of information to be helpful to their clients (not only those suffering from clinical consequences of the infection but also the "worried well," both infected and uninfected) and to others with whom they are in a position to communicate. Public officials, opinion makers, and the press represent other groups to which extensive education about AIDS must be targeted. Their influence on matters of public policy is of prime importance, and misinformation among these groups can counter- act the beneficial effects of many other educational efforts. The youth of the nation, emerging into the sphere of sexual activity and becoming potential customers in the illicit drug trade, must be alerted to the existence of the disease and to its mode of transmission. Surveys of high school students reveal an alarming degree of misinformation about AIDS. Even many students living in San Francisco, an AIDS epicenter, were seriously misinformed as late as 1986. In a survey of 1,300 high school students, 40 percent did not know that AIDS is caused by a virus. One-third believed that a person could contract the disease by merely "touching someone who has AIDS" or by "using a person's comb." Four in 10 students did not know that the use of a condom during sexual intercourse decreases the risk of transmitting HIV infection. The need for educating the nation's youth about sexually transmitted diseases is well known. For example, in 1980, prior to recognition of AIDS, the U.S. Public Health Service (1980) published a document
102 CONFRONTING AIDS entitled Promoting Health/Preventing Disease: Objectives for the Nation, which included a set of goals for the decade ahead. Among them was one with relevance for the AIDS educational effort: "By 1990, every junior and senior high school student in the U.S. should receive accurate, timely education about sexually transmitted disease." Sex education in the schools still must overcome considerable political opposition and bureaucratic intransigence. Nevertheless, at least nine states have passed statutes that permit or even mandate education on sexually transmitted diseases in the public schools. There are some exceptions to the general unwillingness to broach issues of sex, even homosexuality. The Oregon legislature established a special Venereal Disease Education Teachers' Scholarship Fund. Ohio's Department of Health has piloted an information package on AIDS for use in schools (Intergovernmental Health Policy Project, 19851. Public schools in New York City have integrated AIDS education into "family life" curricula and mandated that a two-lesson course be available to all students. Letters about the course were sent home to the parents of 2,800 students in one high school; the parents could request that their child be excused from the class only three did so (Rimer, 19861. Even if the dangers of HIV infection are not discussed in the context of sex, certainly these dangers can be discussed in school curricula dealing with the dangers of drug abuse. Moreover, groups such as the American Red Cross are more likely than groups identified with homosexuals to be permitted to discuss the risks of HIV transmission in the schools. Recently, the Red Cross has increased its AIDS education efforts considerably to embrace concerns beyond blood banking in educating the public at large. Blacks and Hispanics comprise a disproportionately high percentage of AIDS cases, in spite of the media's frequent portrayal of the disease as a problem almost exclusively of white, middle-class, homosexual men. These groups require specially focused programs developed by health departments in areas having large black and Hispanic populations. There is much confusion about the possibility of heterosexual trans- mission of HIV (in both directions) and about the degree of risk associated with heterosexual contact. Hotlines report increased numbers of calls from women. The public at large deserves to receive considerable attention. The large proportion of IV drug users among AIDS sufferers represents a serious threat to themselves and to their sexual partners. Many IV drug users are already caught up in patterns of asocial and antisocial behavior that may make appeals meaningless to them. Self-preservation will need to be emphasized strongly for this group of people. The lack of available treatment programs and facilities for IV drug users
ALTERING THE COURSE OF THE EPIDEMIC 103 represents a serious problem. Drug treatment programs are greatly overtaxed at present, and a program that inspired widespread efforts at rehabilitation among IV drug users (to avoid AIDS) could swamp already strained facilities. Thus, efforts to achieve access to IV drug users must be coupled with realistic planning of ways to cope with success. Who Should Do the Educating? The range and diversity of education needed against AIDS make it obvious that the effort must take many forms and find support from many sources. Health professionals doctors, nurses, health educators, public health officials are all important links in the educational process. They must be taught through professional associations, academic curricula, and continuing education so that they, in turn, can teach their patients and associates. Among members of high-risk groups, counseling by peers is likely to be the most effective source of information, and such counseling should be available for those at risk. Government at all levels, not only local officials in certain high-incidence areas, must be willing to support and fund efforts to educate members of high-risk communities. Many governmental efforts will necessarily address the general public rather than special target groups and will probably be limited to activities such as the distribution of pamphlets, placement of advertisements, and organization of telephone "hotlines." These activities will be useful in maintaining public consciousness of the disease and in reinforcing more- specifically-targeted educational efforts performed by others. However, if nothing else is done, these general educational efforts will be grossly inadequate. Government must prepare to fund targeted education through grants and contracts to private organizations that can communicate with special groups, in language appropriate to those groups, about relevant aspects of the disease. These include homosexual organizations (among which appropriate educational work has already begun in some areas), schools and colleges, women's groups, youth groups, prisons, prostitutes' groups, and any type of organization with access to the IV drug user population. A massive, coordinated educational program intended both to interrupt transmission of the virus and to allay public fears will not be cheap. Although funding by the federal government for AIDS-related activities has recently increased, the amounts budgeted total less than $25 million; many times that amount could usefully be spent (Fineberg, 1986; Jenness, 1986~. Although there is need for much greater involvement of foundations
104 CONFRONTING MD3 and private sector organizations with expertise in health promotion, such participation would not relieve the government of a fundamental respon- sibility in funding and implementing educational programs. The most fundamental obligation for AIDS education rests with the federal government, which alone is situated to develop and coordinate a massive campaign to implement the educational goals outlined above. Assessing Educational Interventions The effects of educational programs will not be immediately reflected in declines in the incidence of AIDS cases. As noted earlier, AIDS incidence rates reflect infections contracted several years prior to the onset of the disease. If there were reliable data on seropositivity in representative samples of the target populations, these data could provide an indicator of the effectiveness of such programs. But even such up-to-date indicators of the spread of the infection would be of limited value, because seropositiv- ity incidence rates can change for reasons unrelated to the effects of education programs. Such aggregate data would not identify who has been exposed to particular educational programs. Moreover, the likeli- hood of infection for an individual can change with the prevalence of infection in the population. For example, an individual may practice "safer sex" and greatly reduce his number of sexual partners as the result of exposure to an education program, but his likelihood of infection may nonetheless rise if the prevalence of the infection increases among his partners. This has been the case in San Francisco, where dramatic changes in sexual practices among homosexual men have been under- mined by skyrocketing seropositivity rates (Centers for Disease Control, 1985b). In addition to measures of disease and incidence and knowledge about disease transmission as reflected in polling data, it will be crucially important to obtain reliable indicators of changes in the incidence of behaviors that involve risk of infection. Such measurements will pose a considerable methodological challenge. Survey questions that ask whether respondents have changed their behavior because of the AIDS epidemic are open to serious doubts as to their validity. In particular, these questions especially when asked in the context of an education program that reinforces notions about the dangerousness of the disease have a potential for biasing estimates of the proportion of people who have changed their behavior. This source of bias will require careful study (using probing questions, alternate forms of questionnaires, and so on), and it may be especially crucial in studies of high-risk groups. Evaluating the effects of different educational programs will require that relevant longitudinal data be gathered from participants in the
ALTERING THE COURSE OF THE EPIDEMIC 105 programs and from control groups. Longitudinal data are necessary because only long-term changes in behavior patterns will be elective in controlling the spread of the epidemic. For example, with the relatively recent advent of HIV antibody testing, little is known about how individuals who test positive will react to this knowledge (see section on "Voluntary Testing," below). The launching of a massive and decentralized education program will have many unique elements, and it may involve a slow learning process with considerable trial and error. Rigorous evaluations of these education programs will be important if we are to learn from experience and thereby improve the programs. The technology and basic conceptual framework for conducting rea- sonable evaluation studies already exist. The evaluation of AIDS educa- tion programs should be conducted by a group independent of those responsible for developing and implementing the programs, and the evaluators should provide for strong centralized oversight and quality control of their work. Past experience with large-scale, decentralized social research and evaluation programs indicates that research may be of poor quality without such oversight. A Special Case Changing Behavior Among IV Drug Users Although IV drug users have been recognized as a unique "at risk" group, they have not attracted as much media attention as other groups. Understanding of this group is critical, however, not only because they are the second largest group to have developed AIDS in the United States, but because they are the primary source for heterosexual trans- mission to their sexual partners and fetuses. Moreover, the large differ- ences in seropositivity prevalence rates among IV drug users in different parts of the country mean that there is a tremendous opportunity to halt the further spread of infection by changing behavior among IV drug users. Drug abusers in general and IV drug users in particular do not belong to organized support, self-help, or advocacy groups. On the contrary, these groups have been identified as reservoirs of medical problems (such as hepatitis) and social ills; IV drug use is traditionally regarded as being associated with self-destructive activities. Generally, IV drug users are identified in one of two circumstances: when they seek treatment or when they are arrested. Yet many IV drug users are not regular users, nor are they readily identified by either the health care or the criminal justice system. Treatment for drug-related problems may be provided by the general medical care delivery system without the patient's ever being labeled an IV drug user. Frequently, IV drug users present with clinical signs of depression or other psychiatric
106 CONFRONTING AIDS illnesses, and these, rather than substance abuse, may be the reported clinical diagnosis. Most important, many persons abuse or misuse drugs and never receive any therapeutic intervention. As a rule, the general medical community has preferred not to treat either the social or the medical ills of IV drug users. Instead, society has relied upon the substance abuse treatment system, separate from the mainstream health care delivery system, to provide services for IV drug users. In terms of the natural history of HIV infection, IV drug users engage in a wide variety of behaviors that affect the immune system. They are thus performing natural experiments that may teach much about cofactors in AIDS. From a behavioral science perspective, IV drug use has traditionally been considered one of the most difficult behavior patterns to alter permanently, so that the amount and types of charges in response to the threat of AIDS may provide important information about drug addiction at both the individual and societal levels. The importance of studying AIDS among IV drug users is countered by the great practical difficulties in conducting research in this group. The institutionalized distrust between IV drug users and conventional author- ities makes establishing rapport very problematic. Moreover, the unstable life-styles of many IV drug users make longitudinal research very difficult. Because the majority (93 percent) of AIDS patients are men, the importance of this disease among women has often been overlooked. Yet women represent 20 percent of all heterosexual intravenous drug users with AIDS. Heterosexual acquisition of HIV infection and the develop- ment of AIDS have also been reported among female sexual partners of men at risk. Many men who use intravenous drugs are sexual partners with women who do not one study revealed that 80 percent of male IV drug users had such a primary sexual relationship. Furthermore, among women who themselves have injected heroin, those seeking treatment for their dependency problems are likely to become fertile, as heroin pro- duces anovulation whereas methadone does not. Preventing AIDS among the sexual partners of IV drug users will clearly be a necessary part of overall public health control of the epidemic. But the behavior changes needed to prevent heterosexual and in Nero transmission will be difficult to make and to maintain. Disruption of ongoing sexual relationships and the decision to forgo having children involve considerable psychological costs. These behavior changes would require more intensive prevention resources than those needed for simple dissemination of information. Sexual partners of IV drug users who do not themselves use drugs may also be harder to reach, because they will not necessarily come in contact with treatment centers or with the criminal justice system. Although rapid and widespread dissemination of HIV through a drug
ALTERING THE COURSE OF THE EPIDEMIC 107 using community has occurred in several areas, it may not be inevitable. For instance, seropositivity rates vary dramatically by geographic prox- imity to New York City. The farther the distance from New York City, the lower the prevalence of seropositivity among IV drug users. A city within five miles of downtown New York had a seropositivity rate of 56 percent among its clients in a methadone maintenance treatment program. A similar program in a city approximately 100 miles from downtown New York had a seropositivity rate of 2 percent. Two cities at intermediate distances had intermediate rates. Sharing of paraphernalia was common among the IV drug users in all four cities. Overall, more than 95 percent of these drug users reported some needle-sharing behavior in their lifetime. It is assumed that those farther from New York City are at serious risk of soon being infected with HIV, underscoring the urgency of instituting massive educational and prevention programs ~mmea~a~e~y. There appear to be two primary factors associated with rapid dissem- ination of HIV among drug users in New York City. Prior to concerns about AIDS, the sharing of equipment for injecting drugs was almost universal among IV drug users. Sharing was associated with initiation into IV drug use, it served as a social bonding mechanism among IV drug users, and it also occurred for practical reasons because the drug user did not have enough money to purchase an unused needle and syringe, because fear of arrest kept users from carrying their own apparatus, or because unused equipment was simply not available. As a result of this sharing, the frequency of drug injection has been found to be a strong predictor of seropositivity in the New York City area. Another factor, which may be a critical determinant of the speed of viral spread, is sharing of injection equipment across friendship groups. Clearly, if IV drug users confined their sharing of equipment to limited friendship groups, there would be limited transmission of the virus from one group to another. In New York City the sharing of equipment across friendship groups occurs most frequently in places where IV drug users can rent previously used equipment. In other cities the sharing across friendship groups may occur more frequently with a spare set of equip- ment kept by a drug dealer for customers to use immediately after purchasing the drug. There is a stereotypical notion that IV drug users are so driven by their habits that they have no regard for the health consequences of injecting drugs. (This stereotype is accompanied by a view of IV drug users as a homogeneous group, although in fact people from all walks of life use IV drugs, some on an occasional basis.) Research on IV drug users in New York City, however, clearly shows that concern about dying from AIDS is great enough to change the behavior of many drug users. One study of patients in methadone treatment found that more than 90 percent knew
108 CONFRONTING AIDS that AIDS was transmitted through sharing injection equipment. Of these patients, 59 percent reported behavior change to reduce their risk of contracting AIDS. Other studies have confirmed this finding, with the most common behavior changes including increased use of sterile nee- dles, reductions in sharing equipment, and reductions in drug injection. Confirmation of these self-reported behavior changes comes from studies of the illicit market in sterile needles in New York City. This market has increased greatly since the AIDS epidemic began, and there has been some distribution of "free" sterile needles and syringes as a sales strategy by drug dealers. Drug Abuse Treatment Programs The ideal method of prevention of HIV infection among IV drug users would be to stop people from using IV drugs in the first place. While a drug-free society is a laudable goal, programs must be designed with the understanding that this is not a short-term possibility. Architects of social programs designed to combat drug abuse are faced with some difficult ethical and policy questions: Should programs focus only on drug injection (the AIDS danger), or should they be broader and include any use of such drugs as cocaine and heroin, or broader still and focus on any illicit drug use? Preventing noninfected drug abuse is a valid public health goal in itself, but it may dilute efforts to reduce the AIDS-specific problem of drug injection. Educational programs about the dangers of AIDS and IV drug use are already being developed in some junior and senior high schools. These programs are clearly needed, but there are also limitations on their likely effectiveness. Drug prevention programs based on arousing fear have not been successful in the past, particularly if the fear is associated with a low-probability event. Moreover, many persons who eventually become IV drug users drop out of school well before they make decisions about injecting drugs. Prevention programs targeted at reducing initiation into IV drug use may have to operate outside of school settings and focus on resisting social pressures to begin injecting drugs (similar to the cigarette- smoking prevention programs that focus on teaching skills to resist initiation into cigarette smoking). Such programs are undoubtedly more expensive than are the in-school programs, but they are no less critical. Fear of AIDS, among other reasons, will undoubtedly lead significant numbers of IV drug users to seek treatment for their drug use. For the United States as a whole, however, the availability of treatment was significantly less than the demand for treatment even before the AIDS epidemic. The committee heard dramatic testimony about users willing to sign up for treatment such as methadone maintenance, only to be told of
ALTERING THE COURSE OF THE EPIDEMIC 109 waiting periods of months (R. Newman, Beth-Israel Hospital, Boston, Mass., personal communication, 19861. Expanding the treatment system could significantly reduce IV drug use and the transmission of HIV. Users who had not been infected before entering such programs would greatly reduce their chances of being infected, and users who had already been infected would greatly reduce their chances of exposing others. The possibility exists for saving money as well as lives. At a purely economic level, treating AIDS costs anywhere from $50,000 to $150,000 per case (Chapter 5), whereas providing drug abuse treatment costs as little as $3,000 per patient per year in certain nonresidential programs. Unfortunately, there are factors in addition to finances that currently limit the availability of drug abuse treatment. The notion of drug abuse treatment may have general approval until it involves treatment facilities in one's own neighborhood. Any public association of IV drug use with AIDS is likely to exacerbate the difficulties in finding acceptable locations for new drug abuse treatment programs. In addition, methadone maintenance treat- ment, which tends to be the most acceptable treatment modality for large numbers of IV drug users, also tends to have the lowest degree of public acceptance, and is controversial even among health care professionals. Finally, using drug abuse treatment to reduce HIV transmission poses complex ethical and epidemiologic questions. If there is not, as is currently the case, sufficient treatment capacity for all persons who might want to enter treatment because of the AIDS epidemic, questions of triage arise: Who should be given priority among IV drug users? Should those with AIDS be treated first? Or those who have been infected but exhibit no symptoms yet? Or those who are seronegative? The ethos of medical practice would seem to require that all IV drug users with AIDS be provided with whatever substance abuse treatment they need. Also, providing treatment to seropositive persons during the early part of an HIV epidemic in a local geographic area might dramati- cally slow the spread of the virus in that area. But should special outreach efforts be made to recruit such persons at the expense of providing treatment for seronegative persons? What is the appropriate mix of treatment modalities during (or preferably before) an AIDS epidemic among IV drug users in a community? Although questions of priority are important, limitations on resources are not an acceptable excuse for not using drug abuse treatment to halt further spread of infection. Distribution of Sterile Needles and Syringes Clearly it will not be possible to persuade all IV drug users to abandon drugs or to switch to safer, noninjectable drugs. Many may wish to reduce
110 CONFRONTING AIDS their chances of exposure to HIV but will neither enter treatment nor refrain from all drug injection. Whether legal restrictions on the sale and possession of sterile hypo- dermic needles and syringes should be removed in order to reduce transmission of HIV among IV drug users has been the subject of much public discussion in New York, New Jersey, and other states (Sullivan, 1986; Waldholz, 19851. Increasing the legal availability of hypodermic needles has received some support among public health officials, but generally has been opposed by law enforcement officials, who predict that it would lead to more IV drug use. The actual effects of increasing the legal availability of sterile needles are unknown. Almost no data have been collected on the relationship between the legal availability of sterile needles and levels of IV drug use prior to the AIDS epidemic, and it is doubtful that data collected prior to the awareness of AIDS would be applicable today. AIDS has had sufficient impact on the sale of illicit drugs to encourage the use of sterile, disposable needles and syringes as a marketing device by drug sellers. Unfortunately, in some cases such supposedly sterile equipment has been counterfeited by resealing already used equipment (Black et al., 1986; Des Jarlais et al., 1985~. Innovative model programs involving the distribution of sterile injection equipment by public health officials have taken place in other areas such as Amsterdam, The Netherlands. The actual effects of increased legal availability of sterile needles and syringes on reducing HIV transmission and levels of IV drug use may depend on the specific methods of changing the legal availability and the simultaneous presence of other AIDS prevention efforts. It is time to begin experimenting with public policies to encourage the use of sterile needles and syringes by removing legal and administrative barriers to their possession and use. Recommendations · For at least the next several years, the most effective measure for significantly reducing the spread of HIV infection is education of the public with respect to modes of transmission of the virus. The present effort is woefully inadequate. It must be vastly expanded and diversified, aimed particularly at population subgroups such as those in which significant transmission has already occurred or can be anticipated, those in a position to influence public opinion, and those who interact with infected individuals. · The major aim of AIDS education is modification of certain behavior with respect to sexual and drug use practices, such as unprotected anal and vaginal intercourse with those who are infected or at risk of being
ALTERING THE COURSE OF THE EPIDEMIC ~ ~ ~ infected and sharing of injection equipment. In order to achieve this aim, educators and educational materials must be free to use clear and direct, possibly colloquial, language that will be understood by those being addressed. The committee recognizes that the reluctance of governmental authorities to address issues of sexual behavior reflects a societal reti- cence regarding open discussion of these matters. However, it believes that governmental officials charged with protection of the public health have a clear responsibility to provide leadership and guidance when the consequences of certain types of behavior have serious health conse quences. · Discussion of alternative sexual behavior that provides at least a large measure of protection against transmission of the virus must be conveyed to those targeted for AIDS education. The proper use of condoms, in particular, should be stressed, and condoms must be widely and readily available to the public. It can no longer be assumed that unprotected heterosexual intercourse is safe. It probably is safe only in such situations as a long-term exclusive relationship in which both partners have not engaged in risk-taking behavior or where both partners test negative for HIV infection after six months of refraining from risk-taking behavior. · Special efforts must be made to educate the population of intrave- nous drug users and their sexual partners about HIV transmission both by sharing of injection equipment and by sexual intercourse. This population is one of the least cohesive subgroups in the nation, and innovative methods for reaching it educationally must be developed. · The total educational effort is the combined responsibility of all levels of government, and the private and philanthropic sectors must also participate significantly in this activity. Government agencies that are reluctant to use direct and colloquial language in the detailed content of education programs must be able to accomplish their educational goals by contractual arrangements with private organizations not subject to the same inhibitions. · Special attention must be paid to AIDS education for young people in schools and colleges, many of whom are entering periods of experimen- tation with sex and drugs. Frank discussion of behaviors that do and do not transmit HIV has become an urgent necessity for this target popula- tion. · Consideration should be given to establishing an office or appoint- ment under the Assistant Secretary for Health in the U.S. Department of Health and Human Services with the responsibility for developing a massive campaign to implement the educational goals listed above. The office should encourage and coordinate governmental and private sector efforts at AIDS education.
112 CONFRONTING AIDS · The legal provisions that prevent the Centers for Disease Control from paying for advertising should be altered by the Congress to permit greater access to the media for the purpose of AIDS education; the threat of HIV infection requires more than public service announcements at odd hours. · One of the most difficult high-risk groups to deal with in the current AIDS epidemic is IV drug users. More research, methadone and other treatment programs, detoxification programs, and testing and counseling services related to drug treatment programs are needed. If there are legal barriers to the implementation of such programs, these barriers should be dismantled. · Efforts to reduce sharing of injection equipment should include experimenting with removing legal barriers to the sale and possession of sterile, disposable needles and syringes. · AIDS education should be pursued with a sense of urgency and a level of funding that is appropriate for a life-or-death situation. Greatly expanded educational programs to effect behavioral change are necessary for high-risk groups and the public at large. These efforts should be supported not only by the government, but also by experts in advertising and the media. The total budget for AIDS education and public health measures from governmental and private sources combined should ap- proximate $1 billion annually by 1990 (see section on "Funding for Education and Other Public Health Measures," below). PUBLIC HEALTH MEASURES Traditional methods that public health officials use to check the spread of disease include surveillance for epidemiologic purposes, screening of high-risk persons possibly exposed to infection, and isolation or quaran- tine of infectious individuals. Perhaps no aspect of the issues surrounding HIV infection has caused more controversy than the use of these methods for reporting and attempting to control the infection. Of the available methods, only surveillance has been employed on a large scale. Manda- tory screening programs in the strict sense have not yet been employed with free-living populations, nor have isolation or quarantine. The debate about the use of traditional public health measures with HIV infection must take note of certain factors that distinguish it from other diseases in degree, if not in kind. The stigma associated with AIDS, ARC, and seropositivity far exceeds that of other venereal diseases in most cases. The fear and threat of discriminatory action based on misunderstanding of such conditions are real. Moreover, several types of behavior associated with the spread of infection are illegal in some if not most states. Such behaviors include consensual sexual relations between
ALTERING THE COURSE OF THE EPIDEMIC ~ ~3 males, IV drug use for nontherapeutic purposes, and prostitution. Further complicating the public health picture with regard to HIV infection are the facts that infection seems to be lifelong and that no vaccine (for preven- tion of infection) or satisfactory therapy currently exists. Tests for Infection with HIV The availability of screening tests for antibodies to HIV (see Appendix B) has generated new and vexing questions about their use within blood banks and beyond that realm. The utility and use of the tests remain controversial for reasons pertaining to the public perceptions and concern about AIDS, the technical limitation of presently available testing meth- odologies, and the sheer magnitude and diversity of the tests' present and projected applications. While blood-screening tests have provided an invaluable tool in the epidemiologic understanding of the course and transmission of AIDS, they present, at once, an essential tool in the successful limitation of the spread of HIV infection and a focus for divisive social forces that may inhibit the most expeditious realization of that goal. Only two years have passed since the discoveries that provided the basis for HIV screening tests, but the newly developed blood tests are employed more than 20 million times a year, or about 80,000 times per working day. While the tests are not perfect, they have made the nation's blood supply much safer (National Institutes of Health, 1986~. The standard tests used to identify individuals who have been infected with HIV detect antibodies to the virus in the serum. Antibodies to HIV can be detected by several techniques, including enzyme-linked immuno- sorbent assays (ELISA), immunofluorescent assays, and Western blot analysis. Each of these techniques, when performed by expert techni- cians, is very accurate at detecting antibody either to the whole virus or to viral subcomponents. Of the available techniques for antibody testing, ELISA-based tests are by far the most widely used. The popularity of this technique has as much to do with its cost and ease as with its accuracy. ELISA tests to HIV antigens have recently been developed by several private companies under license to the federal government. ELISA tests react by turning color in the presence of antibodies the more intense the color, the more antibodies present. A test is deemed positive when a predetermined level of intensity is observed. When the cutoff set by the laboratory is low so that faint specimens are labeled positive, the chance of detecting HIV infection despite a weak antibody response is increased. However, setting the cutoff point low involves a certain trade-off, because at the same time it increases the chance of
114 CONFRONTING AIDS "false positives" i.e., positive samples that do not contain antibodies but that nevertheless produce a reaction to the test. The importance of protecting the blood supply has meant that the threshold for the ELISA test has been set low enough that the blood of infected individuals is very likely to yield a positive result (a testing measure known as sensitivity). Yet the blood of those who are not actually infected will occasionally test falsely positive. In blood banks, where those at risk of HIV infection have already been asked to refrain from donating blood for transfusion, the uninfected greatly outnumber the infected. This group of uninfected persons produces the largest number of positive test reactions, because even a small fraction of false-positive results outnumbers the positive reactions of the few individuals who actually are infected with HIV. Thus, in the blood donation context, the likelihood is that a test result judged "positive" on a single initial test is from a person not actually infected. Because of the severe stigma attached to positive test results, more specific confirmatory testing is recommended in most cases. This is usually done by performing other tests, such as immunofluorescent assays or Western blot analyses. These tests usually provide a sufficient level of resolution to permit an accurate determination of the presence or absence of specific reactivity with HIV. The combination of ELISA and other tests increases the positive predictive value of the serologic determination. It is possible to isolate the virus from a large proportion of individuals who have antibodies to HIV (Gallo et al., 1984; Jaffe et al., 1985~. Hence, any individual with antibodies confirmed by Western blot or other testing should be considered to represent risk to unprotected sexual partners or to others through blood, sperm, or organ donations. As indicated above, tests for the detection of HIV antibodies (like all other serologic tests), while quite accurate, are not perfect. As discussed in Chapter 2, the majority of infected individuals develop antibodies relatively quickly; HIV antibodies appear by six months in most of these cases. Nevertheless, some recently infected individuals have been re- ported to be antibody negative but actively infected. Currently available initial and confirmatory tests actually rank quite high in accuracy in relation to other tests used in medical screening and diagnosis. It should be emphasized that the task of deciding upon sensitivity and specificity cutoff points is never solely technical and always will involve value judgments. For example, blood banks must balance the medical and social costs of falsely identifying noninfectious units (wasting the blood and stigmatizing the donors versus missing infectious units and imperiling the blood supply.
ALTERING THE COURSE OF THE EPIDEMIC ~15 Blood Banking Soon after the first descriptions of AIDS among homosexual men appeared, the first cases of AIDS in recipients of blood transfusions were reported. The likely, and exceptionally worrisome, conclusion that AIDS could be transmitted by a bloodborne infectious agent of unknown character heralded a challenge of unprecedented nature and scope to blood-banking services. Since that time, the practice of transfusion medicine and the use of the HIV blood-screening tests have become one of the most complex and emotional aspects in the AIDS epidemic (Goldsmith, 19851. Yet remarkable progress has been made in ensuring the safety of the nation's blood supply (National Institutes of Health, 1986). It is almost universally agreed that screening tests are of paramount importance in the context of blood, plasma, and tissue banking. The blood-banking enterprise has a formidable challenge in educating the public. People must be taught that the notion that blood donation itself places a donor at risk for AIDS is patently false, and they must be reassured that the capacity to test for HIV antibodies, coupled with voluntary self-deferral, has increased the safety of the blood supply. Yet all infected donors will not be detected by currently available diagnostic tests. The small fraction of false-negative test results and the length of time between infection with the virus and the appearance of antibodies underscore the need for those who have engaged in high-risk behaviors to refrain from donation; even with available screening tech- niques, this is still of paramount importance. Blood and plasma collection centers are urged to establish administrative systems to encourage such self-deferral while maintaining donors' privacy. Pioneered by groups such as the New York Blood Center, such mechanisms involve the use of "privacy booths" where donors who think they are at risk but who went to the donation center at the urging of colleagues or friends can limit the use of their blood to research rather than transfusion. The need for this provision and for increased educational efforts is highlighted by the fact that most recent seropositive donors, when followed up, have been found to be members of known risk groups, although some did not recognize this (National Institutes of Health, 19861. The antibody test was introduced at blood centers despite concerns that results were not entirely accurate. Furthermore, it was feared that the availability of an accessible testing option provided at blood donation sites might ironically imperil the safety of the blood supply by encourag- ing members of high-risk groups to donate in order to learn their test results. To allay these concerns, the implementation of the test in blood
~ 16 CONFRONTING AIDS banks was delayed briefly, and in some cases a moratorium of up to six months was declared on notification of donors of their test results. The federal government also made approximately $10 million available to states as start-up funds to establish alternative testing sites, physically separated from blood banks, where persons could be tested for HIV antibodies. These were established in public health departments, hospi- tals, sexually transmitted disease clinics, and health service organizations for homosexuals. Typically, people who desire to be tested at an alternative site are counseled privately, and if they wish to be tested they are given an identifying number (such as date of birth) so that they can receive results anonymously. In most blood banks an ELISA test must be reactive on two or more determinations with a serum specimen for the test to be considered positive. All sera positive by ELISA are then evaluated by Western blot analysis. The test subject is not notified unless the serum is positive by both techniques. In the initial phases of testing, donors whose blood tests positive by only a single test are added to local (but not national) deferral registries to alert blood bank administrators to not accept subsequent donations, and subsequent donations are discarded. The ELISA screening methodologies most widely used at present in the screening of blood donors inevitably yield a small percentage of both false-positive and false-negative results. As discussed above, the cutoff point for definition of a positive test is a matter of judgment and is set within the specific context of test usage. The level of activity in the blood-banking community is such that in this sector alone there are more than 20 million tests for HIV antibodies annually. This means that with tests of the accuracy currently available, there may be about 17,000 blood donors annually who have a repeatedly reactive test, but only 4,000 of these may test positive by the Western blot test. Thus, the existence of even a small fraction of false-positive results has implications for many individuals. Being falsely labeled positive can have devastating personal implications in terms of sexual relations, childbearing decisions, and various forms of discrimination. These false positives ought to be taken into account in the public policy debates about the use of the tests. A recent consensus conference sponsored by the National Institutes of Health has recommended that increased efforts be made to confirm the status of those whose test results are questionable and to bring them back into the donor pool if they are truly seronegative (National Institutes of Health, 19861. The consensus conference deemed inappropriate the practice of failing to notify persons who are ELISA-positive initially but negative by confirmatory tests and are nevertheless added to deferral registries. It also encouraged blood banks to assist in efforts to find and notify past recipients of blood from individuals who are currently
ALTERING THE COURSE OF THE EPIDEMIC 117 seropositive and have a history of blood donation. The Red Cross has begun a "Look Back" program to do so. The consensus conference also underscored the universal agreement that autologous transfusions (i.e., banking one's own blood for future use) are the safest forms of transfusion. The use of this process should be limited to elective surgery where patients can plan ahead to store their own blood, and it needs to be offered to all eligible patients. The consensus conference also discussed the practice of "directed dona- tions," whereby specific individuals among a patient's family or friends are designated as donors. It found that no data have been adduced to demonstrate that the practice is any more or less safe than relying on blood from a general inventory that has been properly screened, and that there are "persuasive arguments against directed donations based on social and ethical considerations." The consensus conference also reit- erated the need for protecting donor privacy while at the same time properly informing the individual of (even equivocal) test results and arranging for appropriate counseling. Surveillance Surveillance, which involves both passive reporting and the active seeking of information, provides data on the prevalence, incidence, and distribution of diseases or infection in the population. Such data can be used to monitor the spread of a disease, to shed light on the mechanisms of transmission, to help in designing public health measures to prevent the spread of a disease, to evaluate the effectiveness of interventions, and to guide planning for the provision of facilities. Data on HIV infection and related diseases are critical to all aspects of coping with the epidemic. In all states, AIDS cases must be reported promptly to local and state health authorities. This action has been taken across the country in response to guidelines from the Centers for Disease Control under the CDC definition of AIDS. Nearly all of the states have taken this action by regulation or directive (such as letters from the state health department to local health authorities, hospitals, clinics, medical practitioners, and so on) rather than by formal legislative enactments. The Centers for Disease Control, which relies predominantly on a reporting system in tracking AIDS, has also done spot checks through retrospective reviews of death certificates and requests for experimental drugs used in treating AIDS to see whether such cases had been reported through normal channels. The reporting of AIDS cases to local public health authorities and the Centers for Disease Control is a critical aspect of monitoring the course of the epidemic. The definition of AIDS adopted by the CDC for epidemio- logic surveillance purposes has been refined, although it is widely
~ I ~ CONFRONTING AIDS recognized that this definition may not be appropriate for decisions about reimbursement or locus of care. There is considerable stigma associated with AIDS. In some cases, this stigma has followed sufferers even beyond death, with morticians' refusing to bury victims. The result has been an increasing number of anecdotal accounts of underreporting of new AIDS cases and fatalities. Statistical and research techniques well known to epidemiologists are such that it is possible to gauge trends in the spread of diseases that have well-understood epidemiologic patterns without the reporting of each and every case. With HIV infection, however, it is desirable to have reporting that is complete or nearly so in order that more can be learned about the epidemiology of the disease e.g., its spread in the heterosexual popula- tion. Reporting Schemes The reporting of seropositive individuals is currently required in only about six states, although such action is being considered in many others. The desirability of setting up schemes to list names and identifiers of those who test positive to HIV antibodies in the context of voluntary programs is another contentious area in the debate over public health aspects of AIDS. In this regard, it is instructive to look at the rationale behind a program in the State of Colorado instituted by health department regulation in 1985 (Colorado Board of Health, 19851. This program, established in a rela- tively low-incidence state, has received considerable attention because of its novelty and because of the vigor with which those who instituted it have propounded it as a model for other states. Colorado established testing centers to which members of high-risk groups are encouraged to present themselves voluntarily. Test results are kept track of by a computer, programmed to provide a system of notification for follow-up tests and protected by an elaborate security system. The arguments presented for the Colorado system are fourfold. First, it alerts health authorities to the presence of infected individuals. Second, it is linked to counseling, which outlines the test's implications for a person's health, sexual practices, and sexual contacts. Third, it may help monitor the incidence and spread of infection. Finally, by having a list of individuals, the state claims to be in a position to establish an order of priority of those to be contacted if and when a promising therapy becomes available (in the case of those who are positive) or if and when vaccines become available (in the case of those who are negative). Despite the arguments proffered by the proponents of administrative schemes like Colorado's, the reporting of seropositive persons has not
ALTERING THE COURSE OF THE EPIDEMIC ~19 been requested by the Centers for Disease Control, and there are strong public policy arguments against it. Such data are not necessarily accurate in estimating the extent of infection across the country. The programs of diagnostic testing are currently still quite sparse throughout the country, so data collection would not provide an accurate baseline, especially since reporting requirements would encourage people to find a jurisdic- tion offering the test on an anonymous basis, thereby skewing the results. Most important, most public health authorities, civil rights groups, and groups representing certain high-risk populations insist that a legal requirement of reporting seropositive status would greatly discourage voluntary testing and would inhibit high-risk persons from seeking counseling and medical treatment out of fear of loss of privacy. Contact Tracing and Notification Closely related to reporting requirements are efforts by public health authorities to trace the contacts of infected persons. Such programs of contact notification or tracing are a traditional part of controlling sexually transmitted diseases. There is very little public health contact tracing in the AIDS field at present. In areas with large concentrations of homosexual men who are already seropositive, it would be both difficult to undertake and very demanding on resources. However, San Francisco has established a small program involving bisexuals, in the hopes of reaching women who do not know they have been put at risk (especially those who may be of childbearing age and who thus could transmit infection perinatally). Those in favor of anonymous (not merely confidential) testing systems have argued that only when such schemes are in place will those in high-risk groups come forward to receive the test. They claim that even where confidential systems have been set up to protect names and identifiers, it is the low level of "confidence in confidentiality" that is the critical factor. Moreover, even strong assurances of confidentiality can be undermined by future threats. Legislation can override original protec- tions, and court subpoenas may seek data originally held to be confiden- tial. Indeed, merely being seen at a testing center can stigmatize an individual, and even a negative test result might imply membership in a high-risk group. Test subjects may be encouraged to waive confidentiality protections "voluntarily" as part of seeking employment or insurance. Other possible threats include informal disclosure by any number of individuals who may have access to data (AIDS Action Council, 19861. The existence of testing programs with lists of identifiers, or making receipt of health care contingent upon even highly confidential testing, might lead some people to seek care elsewhere and discourage others
120 CONFRONTING AIDS from seeking care at all. Some have argued that the existence of contact-tracing programs might actually foster anonymous sexual en- counters by those fearful that names will be turned over to public health authorities. This would undermine the possibility of informal contact notification by infected individuals. Groups with a public health orientation have argued that anonymous testing ought to be considered as a last resort, to be used only if it does not conflict with other efforts to ameliorate the epidemic. For many public health officials, anonymous testing and the failure to maintain registries and to keep track of patient identifiers represent lost opportunities of the greatest public moment. With anonymous testing the opportunity to follow up individuals for counseling, contact tracing, or epidemiologic research may be lost. Mandatory Screening Mandatory screening of the entire U.S. population for HIV infection at the present time would be impossible to justify on either ethical or practical grounds. The number of seropositive persons in the United States in mid-1986 is estimated to be between 1 million and 1.5 million. To identify these and newly infected persons, screening of the entire popu- lation would have to be instituted and repeated periodically perhaps every year or six months-to track changes in antibody status. Another policy option would be mandatory screening of selected subgroups of the population-for example, homosexual males, IV drug users, prostitutes, prisoners, or pregnant women. However, such screen- ing may not be feasible for some of these groups. Persons whose private behavior is illegal are not likely to comply with a mandatory screening program, even one backed by strong sanctions. Furthermore, mandatory screening programs based on sexual orientation would at least appear to discriminate against entire groups. For example, some homosexual males have only one sexual partner or are not sexually active, whereas some heterosexuals have numerous sexual partners. Members of the latter heterosexual group are more likely to transmit HIV infection than members of the former homosexual group. In addition, with the exception of perinatal transmission and transmission by rape, the acquisition of HIV infection requires consensual behavior by the recipient. For the aforementioned reasons, the committee is opposed to the mandatory screening of population subgroups. Furthermore, should an effective therapy for HIV infection be developed, mandatory screening of at-risk subgroups might prove unnecessary, because at-risk individuals would have much stronger incentives to step forward voluntarily for testing.
ALTERING THE COURSE OF THE EPIDEMIC 121 Screening of certain populations has been suggested in a number of specific situations. It has been proposed for a variety of professional, occupational, or client groups, such as health care workers, food han- dlers, or residents of prisons or jails. The Public Health Service has published extensive guidelines for health care workers, for workers generally, and for school and foster care children. None of the PHS guidelines recommends mandatory testing. They do, however, recom- mend voluntary testing where transmissibility has been shown to be a serious problem e.g., the screening of donated blood and tissues and the screening of women at risk who might consider having children. The justification for selective screening programs requires a clear demonstration that the benefit to health outweighs the considerable potential loss of privacy and damage to occupational, professional, or personal status that could result from disclosure of test results. Manda- tory premarital screening for HIV infection is one program that has been debated and rejected by groups such as the American Medical Associa- tion. The committee believes that including HIV antibody testing as part of a mandatory premarital examination is inadvisable. It would counter a trend away from such testing generally, would yield few positive test results while labeling many thousands of individuals falsely positive, and would not extend to persons having sexual relations who do not intend to marry. Persons at high risk could be reached much more effectively by being encouraged to take part in voluntary testing programs. HIV screening and testing programs should be examined in the context of the increasing use of medical tests in other arenas e.g., genetic screening (Kolata, 19861. There are special considerations when a test _ . . yields ambiguous results or information about wnlcn Inere is ll~rl`; allot call be done (Garreau, 19861. Tests for infection with HIV share certain characteristics with genetic screening tests that yield equivocal informa- tion or tell of increased risk of developing disease some decades hence. Obviously, testing for infection with HIV diners in that it involves an infectious disease with ramifications considerably different from those of inherited diseases and conditions. One example of a mandatory testing program can be found in the military (U.S. Department of Defense, 19851. All recruit applicants are screened for HIV infection; those who test positive are ineligible for admission to any service branch. Active-duty personnel are also screened; seropositive individuals are limited to service in the continental United States and become part of large-scale epidemiologic research programs (Norman, 19861. The military's rationale for testing is unique; considerable caution should be exercised in arguments about extending any such program to the private sector. Part of the armed forces' argument stems from
122 CONFRONTING AIDS concerns about military preparedness that the nation needs soldiers who are fit to serve, which may entail their being stationed in areas where diseases unknown in this country might put immunocompromised per- sons at even greater risk. The military also claims that soldiers have provided blood for each other in battlefield transfusion emergencies, without time for extensive testing (although, admittedly, such occur- rences are rare with the use of blood-volume expanders to stabilize the wounded). Other concerns involve immunocompromised inductees' sus- ceptibility to live-virus vaccines, which are required for military person- nel. There are also the political ramifications of the potential further spread of the disease to distant lands where servicemen are stationed and may have sexual relations with citizens of host countries. Finally, an unstated rationale for excluding seropositive applicants from recruitment likely includes the considerable health care and opportunity costs the military would have to bear if newly recruited personnel were to develop AIDS or ARC. Voluntary Testing In a therapeutic context the HIV antibody test allows physicians to determine whether their patients have been infected with HIV. Individual and aggregate data concerning antibody test results also enable epidemi- ologists to assemble baseline data for longitudinal studies monitoring the natural history of the disease. Furthermore, while there is no currently agreed-upon therapeutic intervention for those who test positive, knowl- edge of antibody status for those in high-risk groups may encourage adherence to safer sex practices and a reduction in or abstinence from drug use. This last point is the assumption underlying the Public Health Service's recommendation that all those at risk voluntarily seek out testing. Actually, little is known about the short- and long-term adjustments to seropositivity undertaken by either those found to 'be positive or their loved ones. The potential certainly exists for dramatic impacts in terms of psychological and physical health, sexual behavior, social functioning, and prevention of the spread of infection. The committee urges that such effects be the subject of additional research studies in the context of programs of voluntary, confidential testing. Knowledge of antibody status no doubt has differing implications for various subgroups of the population, though the ability to cope with this information depends on the individual's own personality and social support network as well as on the social and political context. Attitudes regarding testing have changed considerably in the short time during which the test has been available (Eckholm, 1985a). The behavioral
ALTERING THE COURSE OF THE EPIDEMIC 123 relevance and influence of the knowledge of one's serologic status have presumably also evolved. Few would argue that persons who wish to know their antibody status do not have the right to such information. Such an argument would Hy in the face of decades of increased support for truth-telling in medicine, exemplified by a virtually complete reversal in physicians' willingness to share a terminal diagnosis with competent, adult patients. The most important implication of the knowledge of infection and likely infectivity is the added motivation to forgo behavior that may put others at risk (or that may put oneself at possible further risk). Persons in high-risk groups who know that they have risked infection in the past have reason to be aware of the dangers their behavior might represent to themselves or others. Yet screening programs might well uncover many who have had no reason to suspect their having been infected blood donors who had no awareness of their sexual partners' bisexuality or drug use, for example. How should information about seropositivity be imparted? Perhaps the best forum for such disclosure would be in the setting of a well- established physician-patient relationship. Yet this ideal might fall far short of reality for many of those at risk, such as IV drug users who have not been integrated into the health care system. The difficulties in informing patients of a condition that may be fatal or of imparting information couched in probabilities and statistics have been encountered in other contexts. As described earlier in this chapter, there are very great challenges involved in encouraging behavioral changes among those who are asymptomatic, especially changes concerning sexual and drug abuse behavior motivated by biological, psychological, and cultural factors. Measures taken to reduce the likelihood of further spread of the virus may have a devastating impact on an individual's social relationships and mental health. Pilot studies of blood donors who were notified of their positive status revealed that some of these persons had been left by their spouses or lovers after being apprised of blood test results. In describing the experience of prospective recruits who were refused induction into military service because of their seropositive status, newspaper accounts have told of a number of young men sent home with little understanding of the implications of their test results (Spolar, 19854. Some found their spouses or families unwilling to take them back, unable to understand why they could not continue their family heritage of military service, and wondering if their test results meant that they "had AIDS." Social scientists have described systematic differences in the way people perceive risks and adopt strategies to avoid risks and minimize their own vulnerability. With HIV infection, risk perception may depend
124 CONFRONTING AIDS on one's identification with the problem. Homosexual men have been exposed to considerable information about HIV testing and are, of course, more likely to know personally someone who has succumbed to AIDS or is currently sick with HIV infection. Those not in high-risk groups may be less likely to know someone with AIDS but may have felt the impact of the widespread media attention that AIDS has attracted. One 1985 study of homosexual men's attitudes toward testing, whether or not absolutely representative, points out some of the problems inherent in processing information about the HIV antibody test (Coates et al., 19851. The longitudinal study of 728 men in San Francisco included questions about antibody testing. More than two-thirds (69.2 percent) indicated that they would like to receive the test, because knowing whether they were infected would reduce anxiety or help them make decisions about behavioral changes. This majority view contradicted the advice of most opinion leaders in the local community, who raised concerns about the potential emotional damage from testing, the possible breach of confidentiality, and the ambiguity of the test. The most disturbing finding from the survey was the number of subjects (a majority) who believed that a positive antibody test somehow conferred immunity, that they had successfully "fought off,' the virus. The committee believes that the largely undesirable social response to the identification of individuals as being antibody positive argues for voluntary, anonymous systems of testing, but this would entail potential loss of certain public health benefits. Where such systems exist, individ- uals who believe that their behavior has placed them at risk may decide whether or not to avail themselves of antibody testing. For some, the specific knowledge of a positive test might encourage prudence in sexual or IV drug use activities that might put others at risk; knowledge of a negative test might encourage individuals to safeguard this status. All individuals who believe that they may be infected have an obligation to refrain from activities that put others at risk by adopting safe sex be- haviors and following the related recommendations of public health services. The question of whether to undergo testing should be a personal health care decision to be made by an individual, ideally following counseling by health care professionals. However, even though the committee believes that testing should be voluntary, it encourages the use of testing and advocates that it be widely available. The benefits that could accrue to the individual from such a system include the following: (1) a heightened alertness to the possibility of clinical manifestations of HIV infection, leading to more rapid diagnosis and the early institution of treatment; (2) identification of potential candidates for receipt of investigational or, eventually, licensed drugs; and (3) reinforcement of the motivation to
ALTERING THE COURSE OF THE EPIDEMIC 125 adopt precautions to protect others. Even though further research will be needed to show whether knowledge of antibody status has a salutary impact on health-promoting behaviors, such knowledge may be helpful to many individuals. If voluntary testing were linked with confidential identifiers, certain public health benefits would also accrue: the spread of the epidemic could be effectively monitored, appropriate follow-up such as counseling could be provided, and opportunities for epidemiologic research could be pursued. In arguing for a system of voluntary, confidential testing (but with provision for anonymous testing if desired), the committee simulta- neously recommends that steps be taken to minimize any adverse or discriminatory ramifications of antibody testing so that those who might benefit from knowing their status can avail themselves of it without apprehension. This requires consideration of administrative mechanisms to protect confidentiality with regard to information about HIV infection. Additional or bolstered sanctions against unwarranted disclosure through state or federal laws or regulations may be necessary. In no case should a test be made without the subject's prior knowledge (or that of a duly appointed proxy when the test subject's competence is questioned). The test should never be offered without substantial pre-test and post-test counseling. This is particularly important when knowledge of antibody status might result from donating blood or seeking entry into the military. The committee believes that one critical area of voluntary testing involves perinatal transmission. As discussed in Chapter 2, HIV can be transmitted from infected women to their offspring during pregnancy or during labor and delivery. Breast-feeding has also been suggested as a potential mode of transmission. And while it is far from clearly established, some have suggested that pregnancy itself is associated with an increased likelihood of developing disease for HIV-infected women. Because of these concerns, the Centers for Disease Control advises women at risk of HIV infection to consider delaying pregnancy until more is known about perinatal transmission of the virus and health risks to their offspring (Centers for Disease Control, 1985c). The low infection rates in the female population of childbearing age in general would not warrant routine screening, but women in high-risk groups should consider seeking antibody testing. This would include IV drug users, prostitutes, women who have had many sexual contacts in areas where HIV infection is prevalent, women with a history of multiple sexually transmitted dis- eases, or women who have had sexual contacts with men in high-risk groups. These women should have the opportunity to seek testing and counseling. Much of this advice would naturally be given in IV drug abuse
~26 CONFRONTING AIDS centers, comprehensive hemophilia treatment programs, sexually trans- mitted disease clinics, family planning centers, and so on. The health care professionals staffing such institutions need to be aware of the risk of infection, transmission, and the interpretation of test results. The com- mittee recommends that associations of health care professionals who deal with women as clients in such situations for example, obstetricians and gynecologists develop guidelines detailing the situations in which to offer voluntary testing and how best to counsel women at risk. The CDC guidelines are recommended for those wishing more details on this issue (Centers for Disease Control, 1985c). Compulsory Measures There have been a number of proposals involving coercive measures with regard to members of risk groups, HIV-infected individuals, and patients with AIDS. These have appeared in legislative proposals and on editorial pages. They range from such unusual proposals as a call for tattooing seropositive individuals to isolating or quarantining those at risk of transmitting the virus. Frequently such proposals invoke control measures traditionally used to contain certain airborne contagious dis- eases (e.g., tuberculosis), and even in such cases they were used only for recalcitrant patients. Such proposals must, however, be viewed in the light of knowledge about the predominant modes of HIV transmission, which generally involve voluntary behaviors (with the exception of perinatal transmission, rape, and blood and blood product transmission). Moreover, while there have been a handful of celebrated cases involving AIDS sufferers who continue to engage in risky sexual activity, the fact is that those dying from AIDS do not pose the greatest danger in this regard. Rather, greater spread is likely from the million or more persons who are already infected and who are asymptomatic. The active, voluntary cooperation and participation of members of high-risk groups will be needed to curtail the epidemic. Coercive pro- grams may not only be ineffectual, they may actually undermine indi- viduals' sense of responsibility for the community. The committee believes that coercive measures would be ineffective, if not counterpro- ductive, in altering the course of the epidemic. Probably because the general public has not fully or widely understood the predominant modes of HIV transmission, there has been considerable public concern about the likelihood of infection by other than the sexual, parenteral, or perinatal routes. Given the potentially fatal nature of the infection, such concern is understandable. Increasing awareness of the modes of transmission has resulted in the development of policies to protect the health of the public in settings where contact with infected
ALTERING THE COURSE OF THE EPIDEMIC 127 individuals may occur. Precautions appropriate to the workplace, schools, and health care institutions have been elaborated by the CDC (Centers for Disease Control, 1985a). The committee concludes that these guidelines represent a reasonable approach to protecting the public health and that they are soundly based on the available scientific evidence. Despite the lack of potential for altering the course of the epidemic by isolation or quarantine, some states may seek special compulsory powers to deal with the unusual situation of a recalcitrant individual who is seropositive and who repeatedly refuses to follow reasonable public health control directives. No state has enacted special compulsory isolation or quarantine programs for AIDS cases, although at least one state Connecticut has amended a quarantine statute specifically to include AIDS. A quarantine of AIDS patients or carriers has been favored by as much as 40 percent of the general public when queried by pollsters. All states have laws on the statute books or regulations promulgated by their public health departments to prevent, treat, and control communi- cable diseases in general and venereal diseases in particular. Many states enumerate specific venereal diseases, while others require health depart- ment officials to specify such a list for subsequent regulation. Many such statutes allow for criminal sanctions in the case of individuals who knowingly transmit disease. These sanctions are seldom imposed. Historically, in all but a few states, physicians and private laboratories have been required to report the names of individuals with certain communicable or venereal diseases to departments of health. (This is a rare departure from the general rule of physician-patient confidentiality, prompted by concern for the health of third parties.) With syphilis, for example, a public health model of response has been developed that includes prompt treatment of the "index case" and the identification and notification of sexual partners through contact tracing. In many states the definitions and lists of venereal diseases are decades old and do not reflect current concerns about such diseases as herpes and chlamydia. Most of the states have not, at least as of yet, designated AIDS or HIV infection as a sexually transmitted disease. Many state health authorities are of the opinion that they already have effective laws and regulations that could be made applicable to AIDS if and when necessary, but public health statutes concerning infectious diseases are outmoded and may not afford the civil rights protections adopted by American courts. States should review their statutes to ensure compati- bility with current concepts of confidentiality. The usefulness of traditional public health infection control measures to be taken by public health authorities is uncertain. As discussed above, because of the severe consequences of HIV infection, a few states have required that ARC and even seropositivity be reported. Since there is no
128 CONFRONTING AIDS generally accepted means of preventing the spread of AIDS other than education, the usefulness of reporting identifying information to public health authorities would be unlikely to outweigh the adverse social consequences of such identification. Compulsory Measures Among Institutionalized Populations Most of the compulsory actions taken to deal with AIDS have affected closed-community settings such as prisons and jails, mental hospitals, and residences for the mentally retarded. As mentioned, the U.S. armed forces have also instituted compulsory testing of voluntary recruits active-duty personnel, and reservists. Several prison and jail systems across the country have instituted compulsory serologic testing for HIV infection. When prisoners are found to have AIDS or ARC, they are often placed in isolation areas or transferred to other facilities where they can be treated. Prisoners who are seropositive are often segregated and discharged as soon as practica- ble under the requirements of the correctional system. Some prison systems, notably those in jurisdictions with a large number or proportion of prisoners who may be in high-risk groups (especially IV drug users), are considering establishing systems that would transfer seropositive inmates to special facilities more able to deal with such populations. The public authorities who administer prisons, jails, mental hospitals, and similar residential centers have a special legal obligation to care for patients and residents by taking precautions to prevent the spread of dangerous infectious diseases in closed facilities. Compulsory Closing and Regulation of Facilities In a few parts of the country, notably New York City and San Francisco, public health authorities have taken action to close a few bathhouses and bars or taverns where multiple, usually anonymous, sexual encounters take place among male homosexual clientele. These closings have been done under special regulations or under existing legal powers (Rabin, 19861. Only a few such closings have taken place, and they have perhaps been largely symbolic, to aid in general campaigns meant to discourage the use of such places for sexual activities known to spread HIV infection and other sexually transmitted diseases. Attempts to close the bathhouses resulted in pitched battles over what is for some a symbol of homosexual liberation, and for others, commer- cial establishments allowed to foster casual, anonymous sexual activity putting participants at the greatest risk of transmitting HIV infection. Critics in New York City have said that regulations closing the bath
ALTERING THE COURSE OF THE EPIDEMIC 129 houses are tantamount to the decriminalization of sodomy and that too broad regulations would allow closure of other bars, clubs, bookstores, and even hotels. In contrast, some public health officials have said that to allow such institutions to continue to operate in the face of the epidemic would be irresponsible. Although high-risk sexual relations with many anonymous partners admittedly puts one at the greatest risk of HIV infection, opponents of bathhouse closure have argued that it is the type of behavior, not its locus, that presents the greatest danger. Closing such establishments might discourage such behavior. On the other hand, it could merely remove it to public parks or private houses. Moreover, a forum and an opportunity for public education to a targeted high-risk group could be lost. Nevertheless, when applied conservatively and reasonably, these com- pulsory closings can be an effective public health measure. Furthermore, they would most likely be upheld in the courts as constitutional. If public health authorities should decide that compulsory closing or the regulation of facilities is appropriate as an extraordinary measure to stem the tide of AIDS, care must be taken not to transform such actions into the harassment of any facilities catering to a largely homosexual clientele for meals, entertainment, and social discourse; the constitutional protections afforded the freedom of association must be respected. Compulsory closing of such facilities should be a last resort, following regulatory inspection programs of a more general nature to discourage sexual contact that may spread disease and to maintain environmental and sanitation standards (for example, through improved lighting and removal of private rooms). Such regulations should, of course, apply to any public facilities where sexual practices may be dangerous to health and may spread disease, whether the clientele is homosexual, heterosex- ual, or both. Recommendations · The decision of whether to be tested for antibody to HIV should remain a matter for individual discretion, given the array of potential risks and benefits that the test poses for those tested. Testing should be encouraged in light of its potential public health benefits. Mandatory screening of at-risk individuals is not an ethically acceptable means for attempting to reduce the transmission of infection. In addition, such a mandatory program would not be feasible in an open society. · Testing programs should be coupled with strong guarantees of confidentiality. Such assurances should perhaps be backed by punitive sanctions for unauthorized disclosure of antibody test results. The
130 CONFRONTING AIDS committee does not recommend compulsory reporting of seropositive test results. · The committee does not favor the establishment or the use of compulsory measures for isolation or quarantine of AIDS patients or seropositive persons in the general population. There may be need, however, to use compulsory measures, with full due process protection, in the occasional case of a recalcitrant individual who refuses repeatedly to desist from dangerous conduct in the spread of the infection. · Special precautions against the spread of AIDS and the AIDS virus may be necessary in closed populations, such as in prisons, jails, mental institutions, and residences for the retarded. Such measures should be applied with caution and only as clearly necessary and should not be used or cited as models for compulsory programs among the general popula- tion. · As a general policy, children with AIDS should be admitted to regular primary and secondary classes. The CDC guidelines are recom- mended for further reference in this area. FUNDING FOR EDUCATION AND OTHER PUBLIC HEALTH MEASURES Although the committee did not attempt to budget in detail the cost of the education and other public health measures needed to stem the spread of HIV infection, it recognizes that some estimate of the likely magnitude of resources is needed. These include funds for risk-reduction education, serologic screening, surveillance, and experiments with the greater avail- ability of needles and syringes and drug use treatment aimed at preventing the spread of HIV. In some cases, as in the treatment of drug abuse or counseling associated with serologic testing, the line between expendi- tures on prevention and treatment is somewhat blurred. Funds directed toward preventing HIV transmission presently come predominantly from federal and state sources. Federal funds for AIDS education and other public health measures are appropriated to the CDC and also flow via that agency to states through a variety of arrangements, including cooperative agreements, contracts, and grants for activities such as establishing alternative serologic testing sites and demonstration projects for risk-reduction education. The total funds allocated to the CDC for all AIDS-related public health measures are estimated to have been $64.9 million in FY 1986. (AIDS education may also be undertaken by the Office of the Assistant Secretary for Health.) For FY 1988, $107.1 million has been requested. The Public Health Service budget request to the Department of Health and Human Services for FY 1988 includes $68.8
ALTERING THE COURSE OF THE EPIDEMIC 131 million for all AIDS-related health education activities within a total request of $471.1 million. The Intergovernmental Health Policy Project (1986) has recently re- viewed the expenditures of states for AIDS prevention. According to the project, state expenditures have grown markedly in the last few years. In FY 1984-1985 total expenditures by the states and the District of Colum- bia were $9.6 million, and in FY 1985-1986 they were $33 million. For FY 1986-1987 a total of $65 million is projected. The latter total is for 21 legislatures and the District of Columbia. But five states (California, New York, Florida, New Jersey, and Massachusetts) account for 85 percent of the total expenditures since July 1, 1983 ($117.3 million), with California and New York jointly accounting for 66 percent. Of this $117.3 million, $5.2 million has come from redirection or reallocation of existing re- sources within state health departments usually from communicable or sexually transmitted disease programs. The states of California and New York together account for approxi- mately 55 percent of all reported AIDS cases, with the New York and San Francisco SMSAs alone accounting for 40 percent of cases (as of August 1, 19861. Thus, there is a positive correlation between the state expendi- tures and the number of reported AIDS cases. However, funding future infection control efforts through a "formula" based on the number of AIDS cases in an area would be a grave mistake in light of the long lag time between infection and disease. Indeed, the Public Health Service has projected that 80 percent of all new AIDS cases in 1991 will occur outside of New York City and San Francisco. Approximately 50 percent of these cases are potentially preventable, and the others will occur in individuals already infected (Morgan, 19861. In subsequent years the proportion of cases potentially preventable is larger. If efforts to stop the spread of infection are to be effective, they must start (or be expanded) immediately, not only in areas where there are now AIDS cases but also in areas where there are as yet few or no cases. Delaying such efforts until cases occur would make it likely that the problem of AIDS in those areas will subsequently be far greater. The opportunity to forestall the further spread of infection must not be lost. Some examples illustrate the magnitude of funds needed for all the public health prevention efforts listed above: · Testing at alternative test sites, including counseling, is estimated to cost approximately $40 per individual (J. Chin, California State Depart- ment of Health Services, personal communication, 1986), and although the numbers in the various AIDS risk groups are not precisely known, they may encompass as many as 10 million homosexual males, 1.5 million IV drug users, and probably millions of heterosexuals at some risk. Also,
132 CONFRONTING AIDS more than 5 million pregnancies occur every year, in some proportion of which women will be tested and counseled. · The most successful education programs to date (exemplified by the experience in San Francisco) have occurred within small geographic areas where there are educated homosexuals. Programs for other groups, such as IV drug users, will face more difficult problems of access and motivation; they will therefore probably require more resources per capita. In addition, large groups such as sexually active heterosexuals who have had a number of partners will need to be reached and motivated to adopt risk-reducing behaviors. · Newspaper, radio, and particularly television advertisements are influential means of communicating information to a mass audience, but the use of these media is expensive. One page of advertising in a major newspaper can cost around $25,000 per day, and a minute of national television time can cost between $60,000 and $400,000. Consequently, to influence the behaviors affecting HIV transmission, policymakers must begin to contemplate expenditures similar to those made by private sector companies to influence behavior" for instance, $30 million to introduce a new camera, or $50 million to $60 million to advertise a new detergent. Furthermore, advertising campaigns at these levels are judged successful even when they produce relatively modest shifts in behavior. The efforts needed to influence the behaviors that spread HIV will have to be greater and more sustained (Fineberg, 19861. California has moved earlier than most states to provide funds for AIDS prevention, undoubtedly because the need for such actions has been reinforced by the occurrence of cases. (It is hoped that other states will not delay launching prevention efforts until they have the same stimulus.) Current annual state expenditures for AIDS prevention efforts in Califor- nia average 65 cents per capita, and in San Francisco such expenditures approximate $5 per capita (D. P. Francis, California State Department of Health Services, personal communication, 19861. Extrapolated on a population basis for the entire United States, these figures would amount to state expenditures nationwide of approximately $150 million and $1 billion, respectively. The committee believes that the desirable level of state expenditures probably falls between these two figures. It bases this conclusion on the fact that although San Francisco has a sizable concen- tration of homosexual men, this group does not unduly bias the California population as a whole. In addition, the need for active prevention of spread among heterosexuals is only now becoming recognized, and efforts need to be directed to this group. The risk to heterosexuals is greater in areas of high prevalence, but prevention efforts will need to be relatively uniform nationwide.
ALTERING THE COURSE OF THE EPIDEMIC 133 The committee also believes that expenditures just from the states of the size mentioned above will be inadequate for a number of reasons. For one, the effectiveness of the educational message will be reinforced if it is delivered from a variety of agencies in a variety of settings. Thus, federal efforts should complement those of the states, which in turn should complement the local efforts of employers and private groups. Funds should be provided for these efforts at each level. Recommendation For the reasons listed above, the committee believes that a total national expenditure based on a per capita prevention expenditure roughly similar to that made in San Francisco by the State of California is a necessary goal. This suggests the need for approximately $1 billion annually for education and other public health expenditures within a few years. A major portion of this total should come from federal sources, because only national agencies are in position to launch coordinated efforts commensurate with the potential size of the problem. The process of designing and implementing educational interventions to reduce the risk of HIV transmission, followed by evaluations of their effectiveness, will enable policymakers to evaluate over the next year or two the magnitude of effort needed to bring about a drastic reduction in the spread of HIV infection. It is possible that the amounts envisaged by the committee will not be sufficient to stem increases in the prevalence of infections, especially since some of the groups at risk are difficult to reach with conventional approaches and since, despite the expenditures noted above, the infection continues to spread in areas such as San Francisco, though at a reduced rate. More funding for prevention measures will be necessary if those envisaged here for 1990 do not prove sufficiently great to slow the epidemic. DISCRIMINATION AND AIDS The stigma associated with AIDS has led to unfortunate instances of discrimination in employment, housing, and access to social services. Sometimes this discrimination involves persons with AIDS or ARC- sufferers are discriminated against by those who misunderstand the modes of transmission and harbor unfounded fear of the risk of infection from mere casual contact. In other cases disputes arise because of underlying prejudices about those at risk for AIDS (for example, over services for IV drug users or in using AIDS to rationalize antihomosexual bias). Although the precise extent of such occurrences is difficult to document, a recent report by the New York Commission on Human
134 CONFRONTING AIDS Rights found AIDS as the basis of a number of allegations of anti- homosexual bias and violence (City of New York Commission on Human Rights, 1985~. Legal disputes involving AIDS are arising constantly (Curran et al., 1986; Lambda Legal Defense and Education Fund, Inc., 1984; Tarr, 19851. One report on the mediation of AIDS disputes used the number of requests to legal aid services in high-incidence areas as a barometer of the social disquiet occasioned by AIDS (Stein, 19861. In 1985 the San Francisco Bay Area Lawyers for Individual Freedom (BALIF) received 1,400 requests for legal assistance. Gay Men's Health Crisis (GMHC) has more than 3,000 pending requests for legal consultation and expects 1,000 new queries throughout 1986. GMHC's title belies its present ecumenical nature: 30 percent of its requests were from the heterosexual community. Questions may arise in the workplace about testing prospective em- ployees for infection with HIV; about hiring or firing someone who has AIDS, ARC, or is seropositive; or about the refusal of employees to work alongside or to provide services to someone who has AIDS (Leonard, 1985). A number of major employers, led by a group in the San Francisco area, have begun to establish programs to educate employees about the risk of AIDS, along with policies clarifying the status of persons with AIDS or ARC in the workplace. Several states have enacted laws of various types to prevent discrimi- nation against persons with AIDS. Several of the laws also cover seropositive persons on the same basis. These laws, statutes, and city ordinances generally deal with discrimination in employment and hous- ing. Some of the laws prevent employers from requiring HIV testing of employees and job applicants. In several jurisdictions, the state antidis- crimination commission or agency has designated AIDS and HIV infec- tion as protected under their programs. On the federal level, one federal circuit court has found infectious diseases, and by implication AIDS and possibly HIV infection, covered under federal law preventing discrimination against the handicapped (Arline v. School Board of Nassau County, 1985~. The U.S. Supreme Court has accepted this decision for review, and a ruling on this issue can be expected soon. The statute in question, the Rehabilitation Act of 1973 (U.S. Congress, 1973), provides that no otherwise-qualified individual shall, solely by virtue of his or her handicapping condition, be excluded from participation in or from receiving benefit under any program receiving federal financial assistance. (The statute does not cover privet-e businesses or schools.) A recent federal memorandum from the Office of Legal Counsel of the U.S. Department of Justice takes the position that discrimination against persons suffering from the disabling effects of
ALTERING THE COURSE OF THE EPIDEMIC )35 AIDS would violate the federal law, but that firing or refusing to hire someone because of fear of the spread of AIDS would not be prohibited, even if unfounded. Recommendations · The committee believes that discrimination against persons who have AIDS or who are infected by HIV is not justified, and it encourages and supports laws prohibiting discrimination in employment and housing as formal expressions of public policy. The committee also supports a federal policy to include AIDS as a handicapping condition under the federal law prohibiting improper discrimination against the handicapped. · Any form, direct or indirect, of discrimination against vulnerable high-risk groups for AIDS should be discouraged and prohibited by state legislation and, where appropriate, by federal regulation and statute. In a positive manner, participation by representatives of high-risk groups in policymaking bodies should be encouraged where appropriate and prac- ticable, and the help of organizations representing high-risk groups should be enlisted for public service programs such as health education, personal counseling, and hospital and home treatment services. REFERENCES AIDS Action Council. 1986. Consensus Statement on HTLV-III Antibody Testing and Related Issues. Washington, D.C., May 30, 1986. Arline v. School Board of Nassau County, 772 F. 2d 759 (11th Cir. 1985). Bayer, R., and G. Oppenheimer. 1986. AIDS in the work place: The ethical ramifications. Business and Health Jan./Feb.:30-34. Black, J. L., M. P. Dolan, H. A. DeFord, J. A. Rubenstein, W. E. Penk, R. Rabinowitz, and J. R. Skinner. 1986. Sharing of needles among users of intravenous drugs. N. Engl. J. Med. 314:446-447. Brandt, A. M. 1985. No Magic Bullet: A Social History of Venereal Disease in the United States Since 1880. New York: Oxford University Press. Centers for Disease Control. 1985a. Education and foster care of children infected with HTLV-III/LAV. Morbid. Mortal. Weekly Rep. 34:517-521. Centers for Disease Control. 1985b. Self-reported behavioral change among gay and bisexual men. San Francisco. Morbid. Mortal. Weekly Rep. 34:613-615. Centers for Disease Control. 1985c. Recommendations for assisting in the prevention of perinatal transmission of human T-lymphotropic virus type III/lymphadenopathy- associated virus and acquired immunodeficiency syndrome. Morbid. Mortal. Weekly Rep. 34:721-726, 731-732. Check, W. 1985. Public education on AIDS: Not only the media's responsibility. Hastings Center Reports 15:27-31. City of New York Commission on Human Rights. 1985. The Gay and Lesbian Discrimina- tion Documentation Project. Second Report Covering Nov. 1983-Oct. 1985. New York: City of New York Commission on Human Rights.
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