Click for next page ( 96


The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement



Below are the first 10 and last 10 pages of uncorrected machine-read text (when available) of this chapter, followed by the top 30 algorithmically extracted key phrases from the chapter as a whole.
Intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text on the opening pages of each chapter. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

Do not use for reproduction, copying, pasting, or reading; exclusively for search engines.

OCR for page 95
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

OCR for page 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

OCR for page 95
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

OCR for page 95
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

OCR for page 95
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

OCR for page 95
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

OCR for page 95
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

OCR for page 95
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

OCR for page 95
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

OCR for page 95
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

OCR for page 95
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

OCR for page 95
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

OCR for page 95
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

OCR for page 95
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

OCR for page 95
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,

OCR for page 95
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.

OCR for page 95
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

OCR for page 95
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

OCR for page 95
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.

OCR for page 95
136 CONFRONTING AIDS Coates, T. J., L. McKusick, S. F. Morin, K. A. Charles, J. A. Wiley, R. D. Stall, and M. A. Conant. 1985. Differences among gay men in desire for HTLV-III antibody testing and beliefs about exposure to the probable AIDS virus. Paper presented at the annual meeting of the American Psychological Association. Colorado Board of Health. 1985. Rules and Regulations Pertaining to Communicable Disease Control. Denver: Colorado Board of Health. Conant, M., D. Hardy, J. Sernatinger, D. Spicer, and J. A. Levy. 1986. Condoms prevent transmission of AIDS-associated retrovirus. JAMA 255:1706. Curran, W. J., L. O. Gostin, and M. E. Clark. 1986. Acquired Immunodeficiency Syndrome: Legal and Regulatory Analysis. Contract No. 282-86-0032. Washington, D.C.: Depart- ment of Health and Human Services. Darrow, W. W. 1974. Attitudes towards condom use and the acceptance of venereal disease prophylactics. Pp. 1-292 in The Condom: Increasing Utilization in the U.S., M. H. Redford, G. W. Duncan, and D. S. Prager, eds. San Francisco: San Francisco Press. Darrow, W. W., and M. L. Pauli. 1984. Health behavior and sexually transmitted diseases. Pp. 65-73 in Sexually Transmitted Diseases, K. K. Holmes, P. A. Mardh, P. F. Sparling, and P. J. Weisner, eds. New York: McGraw-Hill. Des Jarlais, D. C., S. R. Friedman, and W. Hopkins. 1985. Risk reduction for the acquired immunodeficiency syndrome among intravenous drug users. Ann. Intern. Med. 103:755- 759. Diamond, E., and C. M. Bellitto. 1986. The great verbal cover up: Prudish editing blurs the facts on AIDS. Washington Journalism Rev. 8:38-42. Eckholm, E. 1985a. City, in shift, to make blood test for AIDS virus more widely available. New York Times, December 23, B-8. Eckholm, E. 1985b. Poll finds many AIDS fears that the experts say are groundless. New York Times, September 12, Bell. Engel, M. 1986. Fears of AIDS limit blood donations. (Report of American Association of Blood Banks survey.) Washington Post Health Supplement, January 15, 15. Farquhar, J. W., N. Macoby, and D. S. Solomon. 1984. Community applications of behavioral medicine. Pp. 437-480 in Handbook of Behavioral Medicine, W. D. Gentry, ed. New York: Guildford Press. Fineberg, H. V. 1986. Statement to the Senate Committee on Labor and Human Resources, Washington, D.C., April 16, 1986. Gallo, R. C., S. Z. Salahuddin, M. Popovic, G. M. Shearer, M. Kaplan, B. F. Haynes, T. J. Palker, R. Redfield, J. Oleske, B. Safai, G. White, P. Foster, and P. D. Markham. 1984. Frequent detection and isolation of cytopathic retroviruses (HTLV-III) from patients with AIDS and at risk for AIDS. Science 224:500-503. Garreau, J. 1986. Is medical testing worth the cost in our freedoms? Washington Post, June 29, C-1. Goldsmith, M. F. 1985. HTLV-III: Testing of donor blood imminent; complex issues remain. JAMA 253: 173-181. Goldstein, R. 1986. Rubber soul: The condom makes a comeback. Village Voice, March 4, 17-19. Handsfield, H. H. 1985. AIDS and sexual behavior in gay men. Am. J. Publ. Health 75: 1449. Intergovernmental Health Policy Project. 1985. A Review of State and Local Initiatives Affecting AIDS. Washington, D.C.: The George Washington University. Intergovernmental Health Policy Project. 1986. An Overview of State Funding for AIDS Program and Activities. Washington, D.C.: The George Washington University. Jaffe, H. W., P. M. Feorino, W. W. Darrow, P. M. O'Malley, J. P. Getchell, D. T. Warfield,

OCR for page 95
ALTERING THE COURSE OF THE EPIDEMIC 137 B. M. Jones, D. F. Echenberg, D. P. Francis, and J. W. Curran. 1985. Persistent infection with human T-lymphotropic virus type III/lymphadenopathy-associated virus in appar- ently healthy heterosexual men. Ann. Intern. Med. 102:627-628. Jenness, D. 1986. Testimony on FY 1987 Appropriation for AIDS before the Subcommittee on Labor, Department of Health and Human Services, Education and Related Agencies of the House Appropriations Committee. U.S. Congress, May 5, 1986. Jonsen, A. R., M. Cooke, and B. A. Koenig. 1986. AIDS and ethics. Issues Sci. Technol. II:56-65. Kolata, G. 1986. Genetic screening raises questions for employers and insurers. Science 232:317-319. Lambda Legal Defense and Education Fund, Inc. 1984. AIDS Legal Guide. New York: Lambda Legal Defense and Education Fund, Inc. Leonard, A. S. 1985. Employment discrimination against persons with AIDS. U. Dayton Law Rev. 10:681-703. Levine, C., and J. Bermel, eds. 1985. AIDS: The Emerging Ethical Dilemmas. Hastings Center Reports Symposium. New York: The Hastings Center. McKusick, L., W. Horstman, and T. J. Coates. 1985. AIDS and sexual behavior reported by gay men in San Francisco. Am. J. Publ. Health 75:493-496. Medical World News. 1985. $1.2 million goes to AIDS education but explicit programs shunned. November 25, 36. Morgan, W. M. 1986. HIV (HTLV-III/LAV) and AIDS: Current and future trends. Presented at the PHS Conference on Prevention and Control of AIDS, Coolfont, Berkeley Springs, W. Va., June 4-6, 1986. National Institutes of Health. 1986. The Impact of Routine HTLV-III Antibody Testing of Blood and Plasma on Public Health. Draft report of a consensus conference. Bethesda, Md., July 7-9, 1986. Norman, C. 1986. Military testing offers research bonus. Science 2:818-820. Rabin, J. A. 1986. The AIDS epidemic and gay bathhouses: A constitutional analysis. J. Health Politics, Policy Law 10:729-747. Rimer, S. 1986. High school course is shattering myths about AIDS. New York Times, March 5, B-1. Spolar, C. 1985. Recruits fault Navy's AIDS policy; sailors with virus antibodies resent facing dismissal. Washington Post, November 23, A-1. Stein, R. E. 1986. The Settlement of AIDS Disputes: A Draft Report for the National Center for Health Services Research. Grant No. HS-005597-01. Washington, D.C.: National Center for Health Services Research. Sullivan, J. F. 1986. Jersey "willing" to give addicts clean needles. New York Times, July 24, A-12. Tarr, A. 1985. AIDS: The legal issues widen. Natl. Law J., November 25, 1. U.S. Congress. 1973. Rehabilitation Act of 1973, Sec. 2 et seq., 504, as amended, 29 U.S.C.A., Sec. 701 et seq., 794. U.S. Department of Defense. 1985. Policy on Identification, Surveillance, and Disposition of Military Personnel Infected with Human T-Lymphotropic Virus Type III (HTLV-III). Washington, D.C.: U.S. Department of Defense. U.S. Public Health Service. 1980. Promoting Health/Preventing Disease: Objectives for the Nation. Washington, D.C.: U.S. Public Health Service. Waldholz, M. 1985. New York City's health unit urges easier syringe rule. Wall Street Journal, September 3, A-14.

OCR for page 95