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4 Altering the Course of the Epidemic AIDS and the HIV epidemic present a fundamental challenge to "guardians" of the public health. This chapter discusses the range of possible public health interventions, the resources and talents that will be necessary to implement them, and the hallmarks of programs that are both responsive to the crisis and consonant with a respect for human dignity and individual freedom. It also highlights the needs of IV drug abusers and several problem areas that will require more attention, such as the impact of AIDS on minorities. FEATURES OF PUBLIC HEALTH PROGRAMS Certain properties of the HIV epidemic distinguish it from other dread diseases and prompt special concerns in fashioning a public health response. The incubation period of AIDS may be a number of years; asymptomatic carriers of the virus appear to be infectious for the remainder of their lives. Public health programs are based on the presumption that this is so. AIDS is also a disease of behaviors- generally private, consensual behaviors such as sexual intercourse and IV drug abuse. Finally, the groups at greatest risk of infection were already subject to social stigma and prejudice; that vulnerability entails unique considerations for public health officials (Walters, 1988~. In considering how to fashion interventions to confront the HIV epidemic, it is useful to review the conceptual framework for the operation of public health programs. They are frequently classified by the 61
62 CONFRONTING AIDS: UPDATE 1988 level of prevention they are intended to provide: primary, secondary, or tertiary; that is, by efforts to prevent the problem altogether, to detect the problem early and provide definitive treatment, or to avert or mitigate the long-term consequences of the problem. Programs organized to combat the HIV epidemic can be considered in that manner, although some program activities may have an effect on more than one type of prevention. Primary prevention, which is aimed at preventing new cases of infec- tion, focuses on three groups. First, there are those who have not begun to engage in high-risk behaviors, principally young persons who are not sexually active or who do not abuse drugs. Activities may be directed at preparing these individuals to avoid risk behavior entirely or to learn safer practices prior to initiation. Second, there are those who engage in high-risk behavior but who have not yet been infected. These individuals may be approached to stop the risk behavior or to learn safer practices. Finally, those persons who are currently infected can be supported in practices that minimize the opportunities for transmitting the virus to uninfected persons. Secondary and tertiary levels of prevention are harder to define in the absence of definitive treatment for HIV infection. Current research indicates that there is a role for early case finding, not only for the contribution early identification can make to primary prevention but also to allow for medical supervision of the asymptomatic individual and for medical care of the symptomatic person. As additional treatment methods are developed, it may be possible to define a tertiary prevention level. The committee believes that the HIV epidemic should prompt a reexam- ination of the fiscal and institutional barriers that impede elective public health efforts in all program areas related to the control of HIV infection. Public health efforts to combat the spread of HIV infection are not limited to programs with "AIDS" in their titles. Sexually transmitted disease clinics (Aral et al., 1986; Solomon and DeJong, 1986), drug abuse treatment centers (Carlson and McClellan, 1987), private physicians' offices (Koop, 1987b), hospitals, and other health care clinics are all appropriate places for HIV education, counseling, and testing. In fact, many of the programs designed to combat gonorrhea, syphilis, chlamydia, chancroid, and other sexually transmitted diseases will themselves have a direct bearing on the AIDS epidemic, as will efforts to combat drug abuse. The continued reprogramming of funds from these activities to AIDS programs may have a deleterious net impact on the public health. ANTIDISCRIMINATION PROTECTIONS Evidence accumulated since the publication of Confronting AIDS gives us further confidence in our conclusions about the modes of HIV
ALTERING THE COURSE OF THE EPIDEMIC 63 transmission (see Chapter 2~. There are no grounds for discriminating against persons with AIDS or HIV infection because of fears that they pose a health risk in the workplace or in housing. The fear of AIDS can be a healthy and useful reaction when it helps people avoid behaviors that put them at risk of contracting HIV infection. Unreasonable fears can have a debilitating effect on both the individual and the body politic (Eisenberg, 1986~. The commute believes that the fear of do nation is a major constraint to the wide acceptance of many potentially effective public health measures. Public health programs will be most effective if they are accompanied by clear and strict sanctions to prevent unwarranted discrimination against those who are infected with HIV or who are at risk of infection. In many instances, discrimination has thwarted access to health care (hospitals, nursing homes, dental care, and private physicians' services), employment, housing, education, health insurance, and even funeral services (Rapoport and Parry, 1987; Dickens, 19881. A few systematic studies have attempted to determine the range and scope of AIDS-related discrimination and legal protections (National Gay Rights Advocates, 1986; ASTHO, 19871. Although it is impossible to tell whether AlDS-related discrimination has paralleled the rise in AIDS cases, dramatic anecdotal accounts reflect problems that increasingly confront those with AIDS or with lesser manifestations of HIV infection, those who are without symptoms but are seropositive, or those who are merely members of risk groups. For example, an apparent rise in violence against gays has been attributed to fears of AIDS (NGLTF, 1988~. Many court cases have been filed involving victims of AIDS-related discrimination in a variety of settings (Boorstin, 1987), and complaints have been docketed with state and local human rights commissions. Courts have ordered schools to admit HlV-infected students and have allowed teachers with AIDS to remain on duty in the classroom. It is likely that many other episodes of discrimination are being resolved privately, or they may simply not be pursued by AIDS patients who are too debilitated to press their claims (Ansberry, 19874. Protection from irrational discrimination is a hallowed function of U.S. law (Parmet, 19871. In particular, Section 504 of the Federal Rehabilita- tion Act of 1973 specifically proscribes discrimination against '`otherwise qualified" disabled or handicapped individuals in programs receiving federal funds. Although persons with AIDS may readily establish their disabled status, the legal posture of those who are seropositive but asymptomatic may be unclear. These individuals may not be considered handicapped under common law or statutory definitions although they may still face discrimination and threats to their livelihood, health, or residence.
64 CONFRONTING AIDS: UPDATE 1988 A case decided by the U.S. Supreme Court since the publication of Confronting AIDS involving a teacher with tuberculosis would seem clearly to extend the protections of Section 504 to HIV-infected individ- uals who display symptoms. Yet in a footnote, the Court explicitly reserved judgment about the status of asymptomatic carriers of infectious diseases (School Board of Nassau County, Florida v. Arline, 107 U.S. 1129, 1987~. However, the Ninth Circuit Court of Appeals has recently held that Section 504 specifically covers AIDS in finding that a public school teacher with AIDS could not be dismissed because of his illness (Chalk v. U.S. District Court for the Central District of California, No. 87-6418, 840 F.2 701, February 26, 19881. The committee supports the enactment of a federal statute specifically designed to prevent discrimination on the basis of HIV infection or AIDS. The committee also supports the consideration by states and localities of statutes and ordinances designed to prevent discrimination in employ- ment, education, housing, health insurance, or the receipt of health care services. However, the committee does not support measures that would abrogate insurers' rights to distinguish among applicants for life insur- ance. States should consider whether their handicapped antidiscrimina- tion, civil rights, education, and insurance laws sufficiently address HIV infection and AIDS. Executive orders and administrative regulations are other possible avenues of reform. It may also be appropriate to review the time it takes to consider claimsif discrimination charges take years to resolve, many AIDS patients may die before their rights can be upheld. EDUCATION Educational efforts to foster and sustain behavioral change remain the only presently available means to stem the spread of HIV infection. This statement is no less true today than it was in 1986 when Confronting AIDS was published. At that time, IOM/NAS lamented the failure of the United States to mount an aggressive, effective AIDS education campaign, calling such efforts woefully inadequate. The past 2 years, on the other hand, have seen many state and local efforts to educate the general public and those in high-risk groups, as well as a nationwide education campaign funded by the federal government and directed by CDC. These significant efforts are laudable. Nevertheless, formidable obstacles to effective AIDS education remain. Merely com- municating information about the risks of infection will not suffice; individuals must also have the motivation and means to translate an awareness of risk into changes in fundamental areas of human behavior. The committee believes that the urgency of the HIV epidemic warrants a multiplicity of educational efforts, including the use of paid advertising
ALTERING THE COURSE OF THE EPIDEMIC 65 on television or in other media. Currently, a number of federal entities, including the armed forces, the postal service, Amtrak, and the mint use paid advertisingover $300 million worth each year. Administrative restrictions from the Department of Health and Human Services (HHS) preclude CDC from doing the same. The committee is aware of concerns about paying for advertising: that paid advertising for AIDS could have a detrimental effect on the amount of time or space donated for public service announcements in general. Nevertheless, it is doubtful that public service announcements are adequate to the task of increasing public awareness of the risks of HIV infection and encouraging behavioral change. The gravity of the HIV epidemic is such that CDC, like other government entities, should be allowed to purchase advertising time and space and should be supplied with the funds to do so. Any administrative regulations that preclude such actions should be withdrawn immediately. Content of the Message The implementation of AIDS education programs has continued to founder over questions involving their content. Although a great deal is known about the modes of transmission of the virus, much of this information is difficult to convey. Only the scientist or physician trained in epidemiology may be able to appreciate the fact that HIV is at once fragile and deadly unable to live outside of the body for very long and yet lethal once it is introduced by sexual intercourse or through the bloodstream. Yet it is essential that educational programs convey to the public this scientifically accurate message. Moreover, these efforts should be aimed beyond those in what traditionally have become identified as high-risk groups. The further spread of HIV is sufficiently daunting to warrant educational efforts to promote personal caution and prudent behaviors on the part of all sexually active persons. The linking of HIV transmission to sexual behavior and IV drug abuse raises concerns about the propriety of the educational message, concerns that have not abated since the publication of Confronting AIDS. Those who view homosexual relations, heterosexual relations outside of mar- riage, or IV drug abuse as immoral may believe that frank, straightfor- ward educational or public health programs encourage such activities. These concerns continue to stymie educational efforts (Booth, 1987b). The committee believes that government at all levels, as well as private sources, should continue to fund ellective, factual educational programs designed to foster behavioral change. This may mean supporting AIDS education efforts that contain explicit, practical, and perhaps graphic advice targeted at specific audiences about safer sexual practices and how to avoid the dangers of shared needles and syringes.
66 CONFRONTING AIDS: UPDATE 1988 Confronting AIDS expressed skepticism about the approach taken by CDC in establishing local boards to review the degree of explicitness of AIDS educational materials (the so-called "dirty words" issue) because of concern that such a process might keep explicit information from those for whom it would be most beneficial. Efforts to stifle candid materials that discuss safer sexual practices and that are targeted at appropriate audiences may take a toll in human lives. In 1987 an amendment to the HHS appropriations bill (P.L. 100-202, Title 5, Sec. 514, 1988) passed the House and Senate with overwhelming majorities. It precludes the use of CDC funds for educational materials "that promote or encourage, directly, homosexual sexual activities" (Booth, 1987a). Explicit information on the risks associated with gay sex and the way those risks can be minimized does not "promote or encourage" homosexual activities. Its sole function is to help homosexuals avoid an illness that endangers their lives and those of their sexual partners and costs the nation billions of dollars. School-Based Education The committee believes that school-based educational programs are an essential part of efforts to increase awareness of the risk of HIV and to combat the spread of infection. Ideally, such education would begin at a young age, with a level of detail and explicitness appropriate for the age group. Education about sexuality and drug abuse, including specific information about HIV, should be part of a systematic and comprehen- sive program of health education. Many states have initiated some kind of AIDS education program. At the time of publication of Confronting AIDS, nine states had statutes that specifically allowed or mandated public school classroom teaching about sexually transmitted diseases. Since then, at least nine more states have passed similar statutes, some of which specifically address AIDS (Asso- ciated Press, 19881. A number of states have also acted in the absence of specific legislation. By early 1987 half of the nation's largest school districts had instituted some kind of HIV education program. Unfortunately, in many states, HIV education proposals have hit formidable roadblocks. The locus of responsibility for shaping the content of AIDS curricula remains a highly charged issue, reflecting historical tensions between state and local control of education. State mandates also vary widely as to the degree of parental control that may be permitted. Some states have provisions that allow parents or guardians to inspect curricular material in advance or to exempt their children from the courses (Koop, 1987a). Colleges are another key site for AIDS prevention and education efforts. Because of the lengthy incubation period of the virus and the
ALTERING THE COURSE OF THE EPIDEMIC 67 timing of the onset of sexual (and drug abuse) activity, there may be few cases of fulminant AIDS among college students. Nevertheless, many may be infected (Hein, 19871. Recent reviews of college-level activities have identified the college campus as a particular gap in AIDS education efforts (Biemiller, 1987; Caruso and Haig, 19871. Within the college setting, there are many opportunities for reaching students with AIDS prevention messages (Fraser, 19871. Dormitory advisors, health centers, and peer groups are beginning to offer HIV counseling on some campuses. More campuses are beginning to offer serologic testing or, if not, to advertise off-campus services. At some colleges, condoms are available through clinics, bookstores, or dormito- ries. A few schools are also carefully evaluating the effectiveness of . . various program mixes. Effect of Educational Programs Awareness of AIDS is widespread. The deaths from AIDS of a number of celebrities have rendered the disease less of an abstraction. During the 12-month period ending October 1987, the number of Americans who reported that they knew someone with AIDS grew from 4 to 6 percent (New York Times, 1988~. The ways in which HIV is spread are also widely known. According to the National Health Interview Survey of August 1987, 92 percent of the public know that AIDS can be contracted by having sex with someone who is infected; more than 80 percent believe that condoms are a somewhat or very effective means of avoiding infection. Unfortunately, serious misunderstandings persist: 25 percent of the general public believe incorrectly that HIV can be acquired by donating blood; 38 percent believe incorrectly that mosquitoes are a likely mode of transmission; and 21 percent believe incorrectly that there is a risk of infection from merely working near someone with AIDS (Dawson et al., 19871. The committee believes that more studies are needed to determine the effects of various types of educational campaigns on specific populations. For example, there have been few systematic assessments of the impact of AIDS education programs or media efforts on the behavior of hetero- sexuals (as opposed to the impact on their beliefs or understanding). The National Research Council's CBASSE study on AIDS research and the behavioral, social, and statistical sciences (see Chapter 3) will explore the effectiveness of educational interventions in depth. The committee's report, to be released in the fall of 1988, will present general principles of health behavior and recommendations about AIDS intervention strategies. Especially critical are educational efforts aimed at persons at risk within minority populations. The prevalence of AIDS in the black and
68 CONFRONTING AIDS: UPDATE 1988 Hispanic communities is substantially higher than the prevalence among whites. Culturally specific programs to address the needs of minority communities, especially in the inner cities, are of paramount importance. In August 1987 CDC sponsored a conference on minorities and AIDS, the outgrowth of which has been a number of new efforts in this regard. A second such conference is planned for the summer of 1988. Gay and Bisexual Men Community-based programs in the two cities hardest hit by the epi- demic, New York and San Francisco, are the oldest examples of aggressive HIV educational efforts. These programs began at the grass roots level with privately raised funds and volunteer support from many in the gay community. Today, they feature a multipronged attack funded by a variety of government and private sources and include media campaigns, peer counseling, literature distribution, and support groups. In addition, local efforts in cities such as New York, Boston, San Francisco, and Los Angeles have been expanded to the state level. It has been shown that substantial changes in behavior can be effected among gay and bisexual men in areas with firmly established gay social and political structures (Winkelstein et al., 1987~. Unfortunately, even the dramatic changes that have occurred in San Francisco and New York are faint reassurance when half or more of the male homosexual population may already be infected (Fineberg, 1988~. The high rates of seropositivity among gay men in these cities and the widespread appreciation of the risk posed by AIDS are not sufficient reasons to abandon educational efforts for homosexual men or curtail local, state, or federal government funding support, despite the claims of some critics (Kilpatrick, 19871. The mere understanding that one may be at risk will not necessarily translate into sustained behavioral change in the absence of concerted educational and counseling efforts. The challenge also remains to educate and inculcate behavioral change among gay men outside of urban areas with active gay social communities and among men who may not see themselves as belonging to the gay community but who nevertheless engage in homosexual behavior that puts them at risk. The committee also believes it is essential to develop effective methods for reaching youth who are just becoming homosexually active. AIDS and Condoms Condoms are a generally effective means of preventing the spread of HIV infection and a number of other sexually transmitted diseases.
ALTERING THE COURSE OF THE EPIDEMIC 69 Studies of the effectiveness of condoms as a barrier against HIV and other viral agents have resulted in recommendations for the use of latex (as opposed to natural membrane) condoms, supplemented by creams or jelly containing nonoxynol 9, a proven virucidal agent (Rietmeijer et al., 1988~. Condoms are regulated as medical devices under the Federal Food, Drug, and Cosmetics Act, and the Food and Drug Administration (FDA) has recently moved to ensure the adequacy of condom manufacture. FDA batch testing and manufacturer quality control programs have resulted on occasion in product recalls. Ensuring that condoms meet quality specifications is only an initial step, however. The occasional failure of condoms is more likely to be attributable to "user failure" than to "product failure" (CDC, 1988a). Greater familiarity with condom use should be fostered to promote a willingness to incorporate them routinely into heterosexual and homosex- ual intercourse. Health care professionals need to advise their patients in detail about how to use condoms. CDC has issued a detailed review of the role of condoms in the prevention of sexually transmitted diseases including detailed guidelines for their use (CDC, 1988a). One obstacle to effective AIDS education has been the long-standing refusal of the media to accept commercial condom advertising in the belief it would offend a substantial portion of their audience. In 1987 some companies relented, including the New York Times, Newsweek, and Time, Inc. (Aiken, 19871. These changes in policy were accompanied by the proviso that the advertising message stress the role of condoms in disease prevention rather than in contraception. Although a few local television affiliates have broken ranks and agreed to accept condom advertising, the networks have continued to balk. Many have pointed out the irony of the numerous steamy sexual encounters that take place on daytime TV soap operas and during prime time with seldom even a mention of the need to exercise precautions. The committee believes that there must be continued attention to the development of policies to foster the use of condoms. Allowing condoms to be advertised through the major media, increasing the number and types of outlets for their sale and distribution, and taking steps to ensure their quality are among the measures the committee has consid- ered. In addition, continued education is needed to ensure their effective use. HIV ANTIBODY SCREENING AND TESTING The proper role of tests for HIV infection has continued to be one of the most controversial AIDS-related public policy issues. Arguments for and against testing (of individuals) and screening (of populations) depend
70 CONFRONTING AIDS: UPDATE eggs largely on the circumstances in which the tests are to be applied. In order to assess the utility of testing or screening in any particular setting, it is essential that the purpose of such activities be clearly spelled out. A few possible rationales related to public health and medical care include the following: · HIV antibody (and, possibly in the future, antigen) screening is essential to ensure the safety of donated blood, tissues, and organs. · Antibody screening is critical in surveillance and planning to obtain geographic and demographic data about the spread of disease. These data are needed to plan targeted public health efforts and earmark patient care services. · Increased antibody testing is also an adjunct to patient care. The advent of zidovudine (i.e., AZT) trials in asymptomatic individuals is one additional reason asymptomatic persons at risk might wish to know their status. In patients with new symptoms that suggest HIV infection, HIV antibody testing should be part of a diagnostic workup. · Testing and counseling may also help foster individual behavioral change. Testing may be especially useful to women of childbearing years confronted with reproductive decisions. · HIV testing may be useful in identifying index cases, which will allow the identification of contacts and others who may have been exposed, such as female partners of bisexual men or recipients of contaminated blood products. Testing will ascertain whether exposed persons have become infected. · Screening has also been proposed as an adjunct to infection control procedures in hospitals to help ensure that appropriate precautions are exercised when invasive procedures are performed on seropositive pa- tients. These varied rationales offer a backdrop against which to examine the array of proposals for more widespread testing. Yet a number of other factors must also be taken into account: the social and psychological ramifications of the test, the expense of testing and the labor-intensive nature of counseling, the accuracy of the test in terms of the number of false-positive and false-negative results (in both the ideal and the "real world" laboratory settings), and the degree to which test information can be protected from unauthorized access (Barry et al., 1987~. At- tributes of the population to be screened are also critical factors. The degree to which a population is at risk and the reservoir of infection within the population to be screened are further considerations. Insti- tutionalized populations pose special concerns (Gostin and Curran, 1987~.
ALTERING THE COURSE OF THE EPIDEMIC 7~ Technical Considerations Tests to measure the development of antibodies against HIV have been commercially available since the spring of 1985. Eight different tests have been licensed for antibody detection, including seven enzyme-linked immunoassay (ELISA) tests and one Western blot test kit. As of 1987 these tests had been approved by FDA for clinical diagnostic use in addition to their original purpose of screening the blood supply. Since their introduction, a number of manufacturing modifications have been approved to bolster the sensitivity (the test's performance among infected individuals), specificity (the test's performance among uninfected individ- uals), and reproducibility of test results. The accuracy of currently marketed HIV antibody tests compares quite favorably with other medical diagnostic tests and has been borne out by experience in the nation's two largest screening programs: blood banks and the military. The more widespread testing programs that have been proposed under a variety of public and private auspices have prompted concerns about the ability to replicate the military's record of testing accuracy (Burke, 1987~. The risk of false-positive results (which is greater in the screening of low-prevalence populations) and the danger of imposing an unneces- sary burden of fear and stigma on uninfected individuals have been sources of misgivings about expanding screening programs (Okie, 1987~. The issue of the number of false test results that might have to be endured to achieve the intended public health result of screening programs presents ethical and political as well as technical questions (Meyer and Pauker, 19871. The committee believes the federal government should give more atten- tion to establishing standards for laboratory proficiency in HIV antibody testing, setting criteria for interpreting assays, and instituting quality assurance procedures. When appropriate, FDA should continue to move rapidly to license new diagnostic tests. Additional resources should be provided to allow state and local governments to expand their testing capabilities, shorten waiting periods, and improve the quality of test results. Informed Consent and Confidentiality In addition to ensuring that tests for infection with HIV are accurate, properly confirmed, and conducted by experienced, proficient laborato- ries, other essential requisites of testing and screening (in addition to counseling) include securing the consent of the individual to be tested and maintaining the confidentiality of the results.
72 CONFRONTING AIDS: UPDATE 1988 Courts have forcefully articulated the right of a legally competent person to direct his or her own medical care. Yet state statutes and case law do not necessarily require informed consent for HIV antibody testing in all cases. It is common practice for physicians to order batteries of laboratory tests for their patients without detailed explanations of each test or more specific consents other than that inferred from the patient s presenting for treatment. (In fact, the possible overuse of medical tests has come under increasing fire.) A few states have clarified the law by requiring specific consent for HIV antibody testing. Still, in the past year, there have been a number of accounts of patients who were tested without their knowledge or consent (Henry et al., 1988a,b). In addition to underscoring the need for counseling to precede and follow the administration of an HIV antibody test, Confronting AIDS recommended that 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 informed consent process should entail a discussion of the clinical and behavioral implications of the test results, including the accuracy of the test and its potential for encouraging behavioral change. Also critical are discussions of potential psychological and social ramifications. The person to be tested should be aware of the third parties to whom the test results must (or may) be divulged. In hospitals, for example, an array of individuals have legitimate access to patient charts. Testing and screening should take place only in the context of pretest and posttest counseling. As discussed elsewhere in this chapter, to encourage the use of the test to promote behavioral change and as a diagnostic tool in the clinical setting, it is essential that confidentiality and antidiscrimination sanctions be in place and be understood and enforced. To secure the cooperation of those at risk of HIV infection in coming forth voluntarily to be tested, test results must be kept confidential (Sherer, 1988~. People will be more likely to undergo testing voluntarily if they believe that inappropriate disclosures of HIV testing information, which could result in the loss of jobs, housing, or insurance coverage, will not occur. The committee believes that laws and regulations with strict sanctions to prohibit willful or negligent unauthorized disclosure of HIV antibody test results are an essential component of the public health effort. Such laws must address both public health and medical records and be coupled with sound recordkeeping practices. Exceptions to confidenti- ality provisions must have a solid basis in public health law or policy and must be clearly justified. Laws regulating the confidentiality of health records tend to be com- plicated, overlapping, and even conflicting (IHPP, 19871. Complexities arise in distinguishing between hospital records and those maintained by private physicians or between records kept in private versus public
ALTERING THE COURSE OF THE EPIDEMIC 73 institutions. Some states protect medical records from court review because of the testimonial privilege deriving from the doctor-patient relationship (although frequently this extends only to psychiatrists). Questions may arise in transferring records from one state to another. AIDS has been a catalyst in some states for a new look at the entire range of protection afforded various types of medical records. Other states have considered the confidentiality of HIV antibody test results specifically. Of the dozen or so states that have instituted HIV antibody reporting requirements, only Colorado, Idaho, and Wisconsin have simultaneously strengthened confidentiality provisions (although other states may rely on existing public health statutes). California and Massachusetts are examples of states that have enacted statutes that severely restrict the scope of disclosure of HIV antibody test results and severely punish negligent or willful breaches of confidenti- ality. Some state laws are so restrictive that they have been criticized for impeding patient care by precluding the sharing of information about patients' HIV antibody status among health care providers. The range of exceptions that have been suggested to the general rule of confidentiality and the context in which breaches have occurred suggest how complex these rules may be in their application. Lawsuits have been filed against blood banks to reveal the identities of donors who may be implicated in transfusion-related HIV transmission, and courts have decided for and against disclosure. Employees in health care institutions and emergency medical personnel have asserted a right to know the serologic status of their patients, especially following accidental exposure to blood or bodily fluids through needle sticks or similar accidents. A number of states have enacted statutes requiring that emergency medical personnel be informed of a patient's HIV infection status if it becomes known subsequent to their contact with the patient; in some states, morticians must likewise be informed if they are handling the body of someone who has died from AIDS. Concerns about confidentiality have extended even beyond the death of persons with AIDS. One court, in upholding the right of a newspaper to print that a local resident had died of AIDS, noted that the public's right to be informed of the reality of AIDS in its own local community was not merely "gratification of idle curiosity." Physicians have cautioned, however, that the continued confidentiality of such information helps to ensure that doctors accurately and completely report causes of death (Lambert, 19881. Of course, statutes and regulations by themselves will not absolutely guarantee confidentiality, however severe the sanctions provided for breaching it. HIV-infected individuals may themselves share knowledge of their status with friends, neighbors, or coworkers, who may in turn
74 CONFRONTING AIDS: UPDATE 1988 disseminate the information further. Statutes enacted to provide privacy protections may subsequently be repealed or limited by case law inter- pretations; medical records are frequently subject to subpoena in the absence of specific protections. The sanctions established by statutes may also be of little use when it is impossible to trace the source of the unwarranted disclosure of information. The committee believes that, in addition to reviewing statutory protections of medical confidentiality, it will also be necessary at the local level for hospitals and other medical care institutions to review their recordkeeping policies and apprise their stat! of their responsibilities to protect patient privacy. Voluntary Testing The committee believes that tests for HIV infection will play an increasingly useful role on a range of fronts in the battle against its spread. The committee recommends expanded voluntary testing combined with counseling of all those whose behavior may have put them at risk for exposure to HIV. Those whose test results are positive have a moral obligation to take the necessary steps to inform and protect their sexual or needle-sharing partners. Antibody status is a powerful piece of information individuals may differ considerably in their psychological and behavioral responses to such knowledge (Martin, 1986~. Screening and testing programs must be linked to programs with adequate staff and funding to offer pretest and posttest counseling for both seropositive and seronegative individuals (CDC, 1987b). Opponents of testing for homosexual men and others at high risk have argued that such persons should simply act '`as if" they were infected because the admonitions would be the same for those who tested positive or negative. Both need to heed advice about safer sex and the sharing of needles and syringes if negative, to preserve one's negative status, or if positive, to protect one's partners from infection. In the absence of a cure or vaccine, testing opponents believe that the potentially adverse social consequences of such tests, in terms of the risk of losing employment, housing, friends, or insurance coverage, are simply too great (Helquist, 1987~. The belief that a knowledge of antibody test results encourages healthier behaviors animates much of public health policy related to AIDS. It is therefore critical to understand whether this is actually and not merely intuitively correct. The differences in behavioral responses on learning of a positive or negative test result, as well as the determinants of individual variations, should be the subjects of continued study. (Apart from the possible behavioral impact of knowledge of antibody test results,
ALTERING THE COURSE OF THE EPIDEMIC 75 it is important that people know their antibody status so they can receive appropriate health care and therapy should it become available.) Virtually all of the studies to date have been conducted with self-identified gay men in large cities. More research is needed on homosexual men outside of the few urban areas that have been the epicenters of HIV infection. Another important research direction is an assessment of the impact of HIV on gay youths who are just entering sexual maturity. Relatively few cases of AIDS have appeared among adolescents; nevertheless, 20 percent of all AIDS cases occur among those aged 20 to 29, suggesting that many young people are being infected during their teenage years. The committee believes further studies to assess the behavioral impact of testing are essential. For example, there are virtually no data on the effects of knowledge of antibody test results on family planning decisions (Grimes, 1987; Cotton, 19881. There are also no published studies demonstrating that women or heterosexual men are more likely to practice safer sex when they know their antibody test result, whether positive or negative. Mandatory Screening The committee has weighed the potential public health benefits of various mandatory screening programs against their problems and has concluded that, at this time, in only a few instances can mandatory testing be endorsed. Mandatory screening programs, especially those aimed at low-risk groups, are likely to be ineffective, counterproductive, and distracting. Mandatory screening of low-risk groups may divert resources from more worthwhile educational and voluntary programs, identify too few individuals at risk, and produce many false-positive test results; it may also have untoward social consequences that would outweigh any possible benefits. The committee believes that, at this time, the only mandatory screening appropriate for public health purposes involves blood, tissue, and organ donation. Nevertheless, screening programs that cast the net more widely among low-risk groups have garnered political as well as popular support, regardless of whether they are likely to reduce the spread of HIV (Hento~, 19871. To examine the merits of some of the plethora of mandatory testing and screening program proposals, what follows are highlights of experiences with programs and data that have come to light since the publication of Confronting AIDS. Blood, Tissue, and Organs The screening of blood and blood products for HIV is a universal standard of practice in this country. The advent of serological screening
76 CONFRONTING AIDS: UPDATE ]~8 in addition to self-deferral of persons at risk has made the nation's blood supply much safer. Yet there remains a small but identifiable risk of HIV infection for recipients of screened blood because of the possibility that recently infected donors are still antibody negative and consequently escape detection by available tests. There is also a possibility of human error in the blood labeling or inventory process. Given current under- standing of the prevalence of HIV infection and the sensitivity of the screening tests now in use, it is estimated that 1 out of every 40,000 to 50,000 HIV-infected blood donations escapes detection (Ward et al., 1988~. New, more sensitive technologies to detect antigen may make the blood supply even safer in the future. The appreciable, albeit small, continuing risk of HIV transmission through blood underscores the need for those who have engaged in high-risk behaviors to refrain from donating blood for transfusion. Blood banks should continue to implement procedures whereby pro- spective donors may "self-defer" without being stigmatized, providing a form the donor can check off privately to earmark donated blood for research (rather than transfusion purposes). Increased support for alternative test sites and other centers for voluntary, anonymous testing will reduce waiting times for test results and mitigate any desire to donate blood merely to determine HIV status. The risk of the transmis- sion of HIV is one of the reasons for the judicious use of blood and blood components and careful evaluation of the clinical indications for transfusion. The transplantation of infected tissues and organs has also been cause for concern. FDA and CDC, in concert with the American Fertility Society, the American Association of Blood Banks, and the American College of Obstetrics and Gynecology, have recently issued more detailed recommendations on HIV antibody screening for semen banking and organ and tissue transplantation (CDC, 1988b). Hospital-Based Screening The committee encourages hospitals and other health care facilities to implement the "universal precautions" recommended by CDC and the American Hospital Association. These precautions involve a number of infection control measures to ward against exposure to any blood or body fluids (CDC, 1987c). The committee believes that, for the purpose of infection control, universal blood and body fluid precautions are prefer- able to any type of widespread hospital-based screening program. Imple- menting such a program might have the paradoxical effect of causing health care workers to ease infection control procedures for patients who are actually infected but who test negative during the "window" of time
ALTERING THE COURSE OF THE EPIDEMIC 77 between infection by the virus and the development of measurable antibodies. Nevertheless, the committee believes that, although mandatory screening of all hospital patients is inappropriate, the current situation warrants more widespread use of HIV antibody tests in the hospital setting on a voluntary, informed basis. For many individuals, being admitted to a hospital is a rare encounter with the health care system. Physicians and other caregivers, when appropriate, should use this opportunity to ascertain the patient's level of risk of HIV infection by taking a detailed sexual and drug abuse history. The assessment of risk should also be influenced by the prevalence of infection in the geographic area. If testing is medically indicated, it should proceed with the patient's understanding and cooperation. Premarital Screening The considerable political and popular appeal of premarital screening proposals is reflected in the number of bills on the subject introduced in 1987- nearly 80 in 35 states (Gostin, 1987b). Premarital screening pro- posals have been advanced in the belief that AIDS should be treated in a manner similar to and no less seriously than syphilis. Historically, states have screened couples for evidence of syphilis and other sexually transmitted diseases before issuing marriage licenses (Brandt, 1987~. Yet more than 20 states have repealed their premarital blood test regulations since 1980, leaving fewer than half the states with such requirements (Hunter, 1987~. Today, such tests are viewed as an inefficient and costly means of discovering too few prospective spouses with sexually trans- mitted diseases (Cleary et al., 19871. The trend away from premarital screening also reflects the fact that marriage is not the precursor to sexual activity, or even to childbearing, that it once was. The average age of initiation of sexual activity reported in a 1983 study was 15.7 years for men and 16.2 years for women; the average age for marriage was 26.7 and 23.1 years, respectively (Hunter, 19871. Nor would premarital screening necessarily be prenatal screening. In New York City, where about 40 percent of the pediatric AIDS cases have occurred, 83 percent involve the children of unwed parents. Despite the idea's initial appeal, only a few states have acted on premarital screening proposals. These include Louisiana, Illinois, and Texas (where screening is mandated only if the seropositivity rate among the general population reaches a certain point). Utah, with a statute that has been criticized as possibly unconstitutional, bans the marriage of antibody-positive individuals (Gostin and Ziegler, 19871. The Illinois statute, which is part of a comprehensive package of AIDS bills, mandates premarital testing. Press accounts of the initial experience
78 CONFRONTING AIDS: UPDATE 1988 with the Illinois program told of an unexpected number of couples seeking testing at public clinics, thus increasing the burden on already overtaxed facilities and counseling staff. The law appears to have discouraged marriage within the state by encouraging couples to apply for marriage licenses in nearby states without testing requirements. An AIDS program director in a newspaper interview described the program as "providing intensive, one-on-one counseling to the people who need it least" (Wilkerson, 19881. Legislators have already moved to repeal the statute. The committee reaffirms the position adopted originally in Corlfrontirlg AIDS that testing marriage license applicants is inadvisable. It does, however, support the approach that requires potential applicants for marriage licenses to be informed of the risks of HIV transmission. Female Prostitutes Prostitution, defined as the exchange of sexual services for drugs or money, is of special concern in the HIV epidemic. By engaging in multiple sexual encounters, prostitutes heighten their risk of HIV infection. Prostitutes are a potential nexus for the heterosexual spread of AIDS because their clients may become infected and in turn infect their partners. They also risk transmission of HIV to any offspring. Studies of HIV antibodies in prostitutes have reported seroprevalence ranging from O to more than 50 percent (CDC, 1987a). Seroprevalence has varied dramatically from city to city, generally paralleling the cumulative inci- dence of HIV infection among women in the area and tending to be more than twice as high for black and Hispanic prostitutes as for white and other prostitutes. The prevalence of HIV infection is highest in the northern New Jersey and Miami areas and lowest in Nevada, where the Nevada Board of Health requires prostitutes in county-licensed brothels to test negative for HIV antibodies as a condition of employment. Although female prostitutes historically have experienced higher levels of sexually transmitted diseases than the public at large, with HIV the primary risk factor seems to be IV drug abuse. Prostitutes are more likely than the public at large to engage in IV drug abuse; they are also at heightened risk when their male partners are themselves drug abusers. As with other groups at particular risk of HIV infection, there has been evidence among prostitutes of considerable awareness of the threat of HIV and some behavioral change, mainly the increased use of condoms. There is also some evidence that while prostitutes have been more likely to require that their clients use condoms, they have been less likely to require their husbands or boyfriends to do the same (CDC, 1987a). Concern about the spread of HIV infection by prostitutes has prompted three states Nevada, Illinois, and Florida- to enact statutes mandating
ALTERING THE COURSE OF THE EPIDEMIC 79 that prostitutes submit to HIV antibody testing. The Newark, New Jersey, city council passed an ordinance over the mayor's veto that requires antibody testing for anyone convicted of prostitution-related offenses that is, prostitutes and their clients. The committee believes that mandatory testing of prostitutes at the time of arrest or as a condition of release is not warranted at this time. Policies that tie the determination of HIV antibody status to criminal action are likely to be counterproductive because they may discourage voluntary efforts to seek testing, counseling, and related medical services. Encour- aging behavioral change among prostitutes demands especially vigorous counseling and voluntary testing programs. Testing should be offered in conjunction with counseling about condom use, opportunities for drug abuse treatment and vocational rehabilitation, and medical care referral. The California Prostitutes Education Project is an example of programs that offer innovative approaches to educating both male and female prostitutes. Other examples include social service projects (e.g., Cove- nant House in New York City) that offer a safe haven and counseling for homeless adolescents, including prostitutes (CDC, 1987a). The committee supports further seroprevalence studies to assess risk in this group and for the larger heterosexual community. The committee did not address the related question of mandatory testing of prisoners; however, it believes the issue deserves further study. Home-Based Testing Many of the concerns about testing and screening are captured in the growing debate over the use of home test kits. There are two possible types of such tests. One type, requiring considerable technological advances, would allow-non-health care professionals to collect their own blood, perform a test, and interpret the results in the privacy of their own home. A second, simpler method involves a kit merely to draw blood, which is then sent to a private commercial laboratory for analysis. Results would then be delivered over the phone by a '`trained counselor" (Miller, 19871. Both of these types of kits would require premarket approval from FDA (Medical World News, 1987; Parkman, 1988~. Both have the virtue of preserving anonymity. FDA approval of the second type of kit has been sought and denied at this time. The agency requested further study to determine whether the methodology could be safely and properly applied. The committee believes that home test kits and their associated questions warrant careful review. The principal virtue of HIV antibody tests, apart from screening blood and organ donations, is as an adjunct to a program of education and counseling. Serious questions of accuracy, confiden- tiality, and counseling remain to be settled before home test kits should
80 CONFRONTING AIDS: UPDATE l 988 be approved. Nevertheless, there may be some individuals who are wary of encounters with the health care system or are fearful of being seen at an alternative testing site or clinic known to offer HIV antibody testing. For such persons, home-based testing may become a viable alternative. OTHER PUBLIC HEALTH MEASURES Duty to Warn One area in which the law has traditionally recognized an exception to the general duties of confidentiality is certain situations in which third parties may be at risk. Case law on the books in many states spells out the duties of physicians to warn specific individuals of foreseeable dangers, including the risk of contracting an infection. Many but not all courts have required that there be specifically identifiable and not merely "statisti- cally probable" victims. Generally, the health care professional must know of some imminent danger to a third party and have some means of preventing the harm. Directly warning the third party at risk may not be required. Merely counseling or dissuading the patient from the avowed course of action might be enough. Informing police or public health authorities might also be reasonable alternatives. Arguments against applying the duty to warn to persons with AIDS or to asymptomatic seropositive individuals hold that the failure to respect professional confidentiality obligations would deter patients from seeking care and would drive the disease underground. Because of the lack of transmissibility through casual contact, an HIV-infected individual does not imperil his or her neighbors, coworkers, or even those who share the same household. Rather, it is specific drug abuse and sexual practices (unprotected vaginal or anal intercourse) that endanger third parties. The American Medical Association has offered guidelines regarding physicians' duty to warn in instances in which there is no statute that either mandates or prohibits the reporting of seropositive individuals to public health authorities and in which a physician knows that a seropo- sitive individual is endangering a third party. In such cases the physician should: (1) attempt to persuade the infected patient to cease endangering the third party; (2) if persuasion fails, notify authorities; and (3) if the authorities take no action, notify the endangered third party (AMA, 1987~. Further extensions of responsibility are unclear, however. Should the physician warn the spouse or lover of a patient? What about previous sexual partners? What kind of assurances should the physician require that sexual partners have been warned and that the patient is heeding advice about safe sex and not sharing needles?
ALTERING THE COURSE OF THE EPIDEMIC 8~1 According to some legal commentators, physicians and public health officials, especially in states with strict HIV confidentiality protections, face potential liability either way they decide (Gostin and Curran, 1987~. The Scylla and Charybdis of conflicting professional obligations are not merely hypothetical. A New York City psychiatrist reports having been sued from both directions, by a patient for disclosures made to the patient's wife and by the lover of a gay patient for not disclosing antibody status (U.S. Medicine, 19871. The AIDS Federal Policy Bill of 1987 was drafted to provide for the confidentiality of HIV antibody test results and to prohibit discrimination against persons with AIDS or those at risk. Provisions of the bill allow physicians to use their discretion in warning third parties at risk. Although the bill does not impose a duty on physicians one way or the other, it does protect them from liability in the event of breached confidentiality in such circumstances. Contact Notification Contact notification can occur in two contexts. Aside from a physi- cian's statutory or professional obligations to warn third parties who have had intimate contact with HIV-infected persons, at the risk of breaching patient confidentiality, such warnings may also take place with the voluntary cooperation of the infected individual and within the private doctor-patient relationship. Health care professionals should encourage seropositive patients to notify their sexual or needle-sharing partners. Physicians may offer to assume that responsibility themselves or merely offer to provide further advice. Those who are notified will have the opportunity to seek serologic testing or further diagnostic information. Contact notification may also involve local public health officials who investigate and notify the sexual or needle-sharing partners of HIV- infected individuals ("index cases," in the public health lexicon). In many states, these programs are specifically authorized by venereal disease statutes (although AIDS is usually not classified as a venereal disease). Statutes give the public health official the power or duty to inquire about the person's previous and current sexual partners. These more aggressive programs still depend on the voluntary cooperation of those who will be asked to share the identity of their partners because the laws establishing such programs do not give specific authority to compel infected individ- uals to disclose partners' names through contempt citations, for exam- ple (Curran et al., 19871. The record of public health officials in preserving the confidentiality of information uncovered in the implementation of contact notification programs is remarkably good (Fox, 19861.
82 CONFRONTING AIDS: UPDATE 1988 The feasibility of contact tracing among high-risk groups in areas with a high prevalence of HIV infection for example, among gay men in urban settings such as San Francisco and New York City has been viewed skeptically. Those in high-risk groups may know already what behaviors put them at risk; they would not, however, know whether or not they had become infected. The committee believes that voluntary contact notification programs can be useful in preventing the spread of HIV infection. Trained counselors in local public health departments have experience in notifying contacts of patients with other venereal diseases; the ethos of client confidentiality is highly valued. Contact notification programs provide for the notification of sexual or drug abuse partners of infected individuals who are afraid, embarrassed, or unwilling to notify partners themselves. The health department can notify the contact without revealing the identity of the index case. These programs may be of greatest value when directed at those who otherwise might be unaware they had risked infection. For example, San Francisco has pursued a limited program to notify female contacts of bisexual men (Echenberg, 19871. Reporting of HIV-Seropositive Cases Approximately a dozen states now require the reporting of seroposi- tivity. Several rationales have been offered for this requirement. First, the reporting of all seropositive test results broadens the state's information base about the prevalence of infection in the state. Second, reporting seropositive index cases facilitates the contact notification process. Third, reporting HIV infection is consistent with the view that the disease is really a continuum from HIV infection to AIDS. Finally, treating HIV infection and AIDS like other reportable diseases helps to dissipate some of the stigma associated with HIV infection and thus "normalize" the disease. Although the committee recognizes these arguments, it believes that mandatory reporting of seropositive test results with identifiers should not be required at this time. Contact notification does not necessarily demand the reporting of seropositive cases with identifiers. Further- more, for determining seroprevalence rates, well-designed population surveillance studies are more useful than ad hoc collections of cases in which the size of the underlying populations is unknown. The commit- tee believes that the effect of mandatory reporting may be to discourage individuals from seeking voluntary testing, a cost that does not justify its potential benefits. Neither are the arguments about treating HIV infection like other diseases sufficiently compelling to risk deterring individuals from being tested.
ALTERING THE COURSE OF THE EPIDEMIC 83 Personal Control Measures Since the publication of Confronting AIDS, there has been increasing attention given to measures aimed at controlling the behavior implicated in the spread of HIV infection, whether through isolation or quarantine, criminal penalties, or civil liability for the intentional transmission of the virus. Scores of criminal cases have been filed involving intentional or reckless attempts to transmit HIV through sexual conduct, giving blood, spitting, or biting. Since the HIV epidemic first appeared, a few states, including Colorado, Connecticut, Indiana, and Florida, have even en- acted statutes providing for the isolation of infectious disease carriers. The problems with many of these measures are manifest: it is difficult to determine intent and to predict with certainty who among the infected are dangerous to others; enforcing prudent behavior is difficult when private sexual activity is involved; the incubation period of the virus makes the determination of causation problematic; and only the poorest and most disenfranchised individuals are likely to come within the bounds of personal control measures (Field and Sullivan, 1987; Gostin, 1987a). Despite these difficulties, if it can be demonstrated that a person know- ingly or recklessly transmits HIV to unwitting partners, there is no reason why such an individual should be beyond the reach of the law. There have been a number of celebrated cases of "recalcitrant" individuals who refused to conform in their behavior to the advice of health officials. (For example, "Patient Zero" was the centerpiece of a popular chronicle of the AIDS epidemic [Shilts, 19871.) The use of criminal law sanctions or legal provisions for isolation will not address the core problems of the spread of HIV infection; neverthe- less, the inability or unwillingness of authorities to deal with such hard cases may undermine confidence in those who are entrusted with the protection of the public health. It is unclear how the numerous laws already on the books would apply to HIV and AIDS, given some of the properties (especially the incubation period of the virus) that distinguish AIDS from other sexually transmitted diseases. Indeed, such laws may be ineffective, protecting neither the public health nor civil liberties. The committee believes that there may be rare instances in which the state should act to restrict the personal liberties of some infected individuals, and states should review their statutes to ensure that such authority exists. Legal measures to restrict personal liberty should be used only when the following conditions have been met: (1) the individual is infected; (2) the individual is putting others at risk; (3) voluntary efforts to prevent the individual from jeopardizing others have failed; and (4) the restrictive measure is the least restrictive alternative available. Furthermore, restric- tive measures should also entail the provision of intensive counseling, job
84 CONFRONTING AIDS: UPDATE 1988 training, and other supportive actions designed to induce behavior change. The time involved should be short and clearly limited. AIDS AND IV DRUG ABUSE Confronting AIDS highlighted the needs of IV drug abusers and noted that this group had not received as much media attention as other risk groups. This situation is changing with recognition of the looming danger that IV drug abuse poses for the user, his or her needle-sharing or sexual partner, and his or her offspring (Des Jarlais et al., 1988~. IV drug abusers are the second largest group of AIDS sufferers; they are the persons most likely to transmit HIV to heterosexual partners. There are an estimated 1.2 million drug abusers in the United States who inject drugs, including heroin and, increasingly, cocaine. Approximately 30 percent of these drug abusers are women. Three-quarters of the IV drug-related AIDS cases come from the New York City metropolitan area, where seroprevalence among IV drug abusers is estimated to be anywhere from 50 to 60 percent (Des Jarlais and Friedman, 1987; Lange et al., 19881. Retrospective reviews of the medical records of drug-related deaths in New York City have uncovered many more deaths (for example, from bacterial endocarditis and tuberculosis) than were originally believed to be related to HIV. The link of IV drug abuse to AIDS is of particular concern to inner-city minority communi- ties, particularly blacks and Hispanics (Ginzburg, 19871. The committee believes that the gross inadequacy of federal efforts to reduce HIV transmission among IV drug abusers, when considered in relation to the scope and implications of such transmission, is now the most serious deficiency in current efforts to control HIV infection in the United States. Correcting this deficiency will require special efforts directed particularly but not exclusively at black and Hispanic populations at risk in New York City and New Jersey (Brown et al., 1987; Rogers and Williams, 19871. The committee supports a number of strategies in the short and long terms to prevent drug abuse and to avoid the risk of HIV infection when such prevention is not possible. The committee urges a greater commit- ment on the part of federal, state, and local governments to the rapid, large-scale expansion of drug abuse treatment slots, both in residential drug-free treatment centers and in methadone maintenance facilities, to offer immediate access to all addicts who request treatment. Without substantially increased funding, however, treatment on demand is a laudable yet distant goal. In January 1988 there were 29,400 methadone maintenance treatment slots for an estimated 200,000 IV drug abusers in New York City. More than 60 percent of those slots were taken by
ALTERING THE COURSE OF THE EPIDEMIC 85 long-term clients who had been on methadone for 2 or more years (Thomas, 19881. Official waiting lists contain at least a thousand names; thousands of others are assuredly deterred by the prospect of a wait of a month or more. Creating and funding more treatment slots will entail training and hiring more counselors and physicians as well as securing more office space, but these are not the only impediments to more ready access to methadone maintenance. Much of the historical development of methadone clinics has involved philosophical debates over the medical versus moral models of treatment and the competing merits of methadone versus drug-free programs (Newman, 19871. The HIV epidemic has quieted some of this debate, and there has been more willingness to loosen some of the restrictions that accompany the dispensing of methadone. In October 1987 the National Institute on Drug Abuse and FDA proposed lifting the requirement that methadone clinics hire a counselor for every 50 patients. In December 1987 the American Medical Association also recommended loosening enrollment restrictions (Thomas, 19881. Others have urged that physicians in private practice be allowed to prescribe methadone. Intervention Innovations The committee supports the increased use of former IV drug abusers as community health workers to provide "one-on-one" risk reduction coun- seling and materials to drug abusers who are not in treatment, including instruction in the use of bleach to sterilize injection equipment. This program points up one important requirement of effective intervention programs they must reach beyond treatment centers, as no more than 20 percent of IV drug abusers attend treatment programs in any given year. In San Francisco, former drug abusers and experienced drug counse- lors distributed thousands of 1-ounce vials of bleach, accompanied by instructions for addicts on how to clean "works" (drug injection equip- ment). A study by an independent research group surveyed 387 addicts at four sites in the San Francisco area. Before the program, only 3 percent reported using bleach to clean needles and syringes, although 34 percent used "possibly safe" methods such as boiling syringes or rinsing them with alcohol or hydrogen peroxide. One year later, the results of a survey of 440 addicts showed that 68 percent used bleach to clean their equipment, while another ~ percent used "possibly safe" techniques (Watters, 19881. According to one of the architects of the program, "the outreach workers, and not the bleach bottles are the linchpins of our program; their street wise skills are essential to empower the IVDUs Lintravenous drug users] to take health maintenance into their own hands, and to reinforce adherence to risk-avoidance measures" (letter to R.
86 CONFRONTING AIDS: UPDATE 1988 Widdus from J. A. Newmeyer, Haight-Ashbury Free Medical Clinic, San Francisco, October 13, 1987~. New Jersey has designed a coupon program using vouchers that entitle prompt entry into drug treatment slots. This policy may allow more precise targeting of the IV drug abuser at greatest risk of infection or in greatest need of intervention while also matching the appropriate treat- ment modality with the particular characteristics of the user. Reports indicate that 84 percent of the distributed coupons were redeemed in the first 3 months of the program (Jackson and Rotkiewicz, 1987~. Distribution of Sterile Needles and Syringes Confronting AIDS concluded that, because not all IV drug abusers will be able to abandon drug abuse or switch to safer, noninjectable drugs, "tilt 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." Some tentative results from needle exchange programs in other countries support this recommendation, and the committee continues to believe that evaluation of the effectiveness of providing sterile needles and injection equipment to drug abusers in certain circumstances is an essential part of planning a prevention strategy. At least four countries the Netherlands, the United Kingdom, Aus- tralia, and Switzerland have begun to experiment with free, govern- ment-supported needle exchange programs, and all report encouraging results (Lofton, 1988~. At a meeting sponsored by the World Health Organization, the Netherlands reported that needle sharing declined from 75 percent to 25 percent from 1985 to 1987. WHO officials caution, however, that programs may not be transplanted readily from one country to another, and they urge nations to begin with small pilot programs. In this country, reluctance to begin to experiment with such programs for fear of encouraging drug abuse has begun to give way to concerns about the risk of AIDS. In New York, where a state statute bans the sale of sterile needles and syringes without a prescription, a proposal to institute such an experiment was made as early as August 1985 by the New York City health commissioner. (Although New York is one of 12 states with statutes banning the sale of sterile needles, the state health commissioner is empowered to waive parts of the law for experimental purposes.) Yet city and state government officials had difficulty agreeing on details of the scope of the programs or the experimental design. In early 1988 a number of events conspired to prompt a change in policy. Concern about the spread of HIV infection in New York City was underscored by a study showing that 1 of every 61 babies born there tested positive for HIV antibodies (Novick et al., 1988~. In another
ALTERING THE COURSE OF THE EPIDEMIC 87 development, ADAPT, a well-respected local drug treatment group, threatened to break the law openly and distribute sterile needles and syringes. With these added pressures, New York State and City agreed to an experimental program to issue sterile needles and equipment to addicts on methadone maintenance program waiting lists in targeted neighbor- hoods in which drug abuse was rampant (Raymond, 1988b). These needle and syringe exchange programs may be viewed as a way to attract addicts into treatment during which they can be counseled not only about the danger of contaminated needles and syringes but also about unprotected sex. There are a number of other short- and long-term approaches to the problems of IV drug abuse that deserve attention, both on their own merits and because the stakes are now higher as a result of the HIV epidemic. In particular, the widespread variations in seroprevalence among even needle-sharing drug abusers highlight the opportunity for interrupting the spread of infection in this group (see Chapter 21. As one tack, the committee supports the immediate extension of serologic testing and counseling for HIV infection to all appropriate settings in which IV drug abusers are seen. Programs should also be developed to promote self-help support groups of former and current drug abusers as a means of providing education about AIDS and drug abuse among at-risk groups. Some treatment centers have designed programs of this type to counsel the families of abusers as well and to assist in obtaining housing, child care, and legal assistance (Raymond, 1988a). Some long-term strategies that deserve increased attention include intensified efforts to prevent IV drug abuse by educating teens and preteens in high-risk populations. Research and evaluation are critical to ascertain which interventions work best. RESOURCES Unlike biomedical research, which is traditionally and overwhelmingly a federal responsibility, funds for AIDS prevention and education right- fully come from a variety of sources, including federal, state, and local governments. It is thus somewhat more difficult to determine whether one of the goals of Confronting AIDSproviding by 1990 $1 billion a year in "newly available funds" for public health and education- is being reached. The goals for public health and education were set with the recognition that, instead of being the sole funding source, the federal government is "the only possible majority funding source." Various private sources have also been marshalled, and charitable contributions in the form of foundation support and individual funding of local AIDS service-providing groups remain a critical part of the effort.
88 CONFRONTING AIDS: UPDATE Eggs Contributions from private individuals are not only monetary; they also take the form of thousands of hours of volunteer time. The current administration request for $1.3 billion for AIDS in fiscal year 1989 represents a substantial (37 percent) increase over the actual funding of the preceding fiscal year. Of the total Public Health Service AIDS budget, $400 million is earmarked for prevention efforts under the category of public health control measures. This total includes a small portion for the prevention of transfusion-acquired AIDS and the devel- opment and evaluation of blood tests ($26 million). The lion's share ($374 million) is reserved for information and education programs directed at the following audiences: the public at large ($50 million); school- and college-aged youths ($36 million); high-risk or infected individuals ($241 million, including $162 million for testing, counseling, and referrals); and health care workers ($44 million). In addition, communities will receive $93 million for the development of expanded programs to treat drug abusers and another $41 million to develop drug abuse prevention strategies. The committee is encouraged by the growth in federal funding and by the heightened commitment of state and local governments, foundations (Wells, 1987; Seltzer, 1988), and the private sector (Allstate, 1988~. Yet the shortfall is still considerable. The committee believes that several critical areas of AIDS prevention and education still need an infusion of personnel and funds. Perhaps the single greatest concern is the lack of availability of treatment facilities for IV drug abusers and the lack of support for programs to eliminate or reduce drug abuse or to mitigate the danger of shared injection equipment. The committee believes that a substantial sum of money will have to be spent for these purposes, well beyond the $1 billion originally proposed for AIDS public health and education measures. IOM/NAS is currently conducting a congressionally mandated study to assess the adequacy of third-party coverage for substance abuse treat- ment. The study's assessment of the cost of such treatment will supple- ment the information already compiled by the Presidential Commission on the Human Immunodeficiency Virus Epidemic. That information was used by the commission as the basis of their recommendation that $1.5 billion annually will be necessary for drug abuse treatment and education. The waiting lists for entry into treatment programs are a clear indication that the caliber of the ammunition in the war on drugs needs to be increased. A number of other specific programs are deserving of particular mention for example, the support of counseling linked to antibody testing. There is a growing realization of the need for such counseling that is, beyond the short-term counseling of antibody-positive individuals.
ALTERING THE COURSE OF THE EPIDEMIC 89 In a health care system skewed toward the reimbursement of procedures rather than counseling, this need is particularly acute, especially if HIV antibody testing is going to be increasingly relied on as a public health measure. The long-term impact of such knowledge is cntical. Counselor training and the development of counseling programs must accompany the expansion of testing efforts. The recent demand for testing in sexually transmitted disease clinics and family planning and maternal and child health clinics is currently outstripping the availability of trained counse- lors. Because they are labor intensive, expanded counseling programs will require a major infusion of funds. Minority groups are not being adequately reached by current educa- tional and outreach efforts. The rates of syphilis cases are an example. Syphilis has declined significantly among gay and bisexual white men; at the same time, there have been small increases in the number of cases among black and Hispanic gay and bisexual men and substantial in- creases among heterosexual black and Hispanic men and women. Edu- cational efforts to foster changes in sexual behavior are critical for minority communities. Sexually transmitted disease programs, family planning clinics, and maternal and child health centers that cater to minority clients are all critical vehicles for this effort and are in dire need of greater federal support. REFERENCES Aiken, J. H. 1987. Education as prevention. Pp. 90-105 in AIDS and the Law, S. Harris, H. Dalton, and the Yale AIDS Law Project, eds. New Haven, Conn.: Yale University. Allstate Forum on Public Issues. 1988. AIDS: Corporate America Responds. Chicago: Allstate. AMA (American Medical Association). 1987. Report of the Council on Ethical and Judicial Affairs: Ethical Issues Involved in the Growing AIDS Crisis. Chicago: American Medical Association. Ansberry, C. 1987. AIDS, stirring panic and prejudice, tests the nation's character. Wall Street Journal, October 9, p. Al. Aral, S. O., W. D. Mosher, M. C. Horn, and W. Cates. 1986. Screening for sexually transmitted disease by family planning providers: Is it adequate and appropriate? Fam. Planning Perspect. 18:255-258. Associated Press. 1988. School boards favor AIDS mandate. New York Times, February 27, p. Ale. ASTHO (Association of State and Territorial Health Officials). 1987. Guide to Public Health Practice: AIDS Confidentiality and Anti-Discrimination Principles. Washington, D.C.: Public Health Foundation. Barry, M. J., P. D. Cleary, and H. V. Fineberg. 1987. Screening for HIV infection: Risks, benefits, and the burden of proof. Law Med. Health Care 14:259-267. Biemiller, L. 1987. Health experts assail colleges for wasting opportunity to lead AIDS- education drive among students. Chronicle of Higher Education, September 23, p. A37. Boorstin, R. O. 1987. Criminal and civil litigation on spread of AIDS appears. New York Times, June 19, p. Al.
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