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1 9. H IV I nfection an d AI DO When the health objectives for 1990 were developed, AIDS-acquired immune deficiency syndrome-had not even entered the medical vocabulary. By 1990, how- ever, 128,319 AIDS cases had been reported in the United States, approximately ~ million Americans are infected. and it is projected that more than 400,000 persons will have been diagnosed with AIDS by 1993. Thus, preventing the spread of this fatal disease is seen by witnesses as a top public health priority. A total of 60 witnesses concentrated on AIDS or infection by human immunodeficiency virus (HIV), the virus that transmits it. Many other witnesses referred to it in the context of drug addiction, reproductive health, occupational safety, and other areas. The testimony highlighted several important issues. Some of the most dramatic testimony related to the serious problem of HIV infection among intravenous (IV) drug users and the need for aggressive action to combat it. The concern was not only with the drug users themselves, but also with transmission of HIV from them to others through sexual contact. Already, perinatal transmission of AIDS is occurring at alarm- ing rates. Most of these cases are associated with illicit drug use, according to testimony. (~376J Many witnesses agree that expanded and improved drug treatment must be a priority in the fight against AIDS. In addition, some observers predict that as a large number of HIV-positive drug users develop AIDS, the health service delivery system will be overwhelmed. Unlike the homosexual community, where many people with AIDS have private health insurance and support systems, drug users with AIDS tend to be far more dependent on governmental health and welfare programs. Speakers discussed several populations who, in ad- dition to IV drug users, are at high risk for AIDS or in need of special education, testing, and counseling. They included children and adolescents, minorities, mothers and infants, and at-risk professionals. Several testifiers also emphasized the need to provide these programs for jail and prison inmates. Charles Carpenter of Brown University calls attention to the [act that certain segments of the prison population in some northeastern states have among the highest pre- valence rates of seropositivity in North America. (~789) Kenneth Kizer of the California Department of Health Services recommends "a greater focus on incarcerated populations" as a means of reaching IV drug using populations with information and educa- tion about AIDS and HIV infection. (#591 J The bulk of the testimony on AIDS and HIV infection focused on expanding education, testing, and counseling programs, with some emphasizing the importance of confidentiality, compassion, and nondis- crimination in these efforts. Witnesses also addressed the role of personal behavior (using condoms, prac- ticing safer sex, not sharing needles), together with preventive services (education, testing, and coun- seling), as ways to prevent HIV from spreading. EDUCATION, TESTING, AND COUNSELING Many witnesses stressed that education and other prevention activities must be tailored to specific target groups: no single approach can reach IV drug users, homosexual/bisexual men, prison inmates, childbearing women, health professionals, minorities, or others at increased risk. Even within these groups, many subgroups exist arid require special attention. Testifiers say that these activities must take place at sites as diverse as the populations they attempt to reach: public schools, sexually transmitted disease (STD) clinics, family planning clinics, drug use "communities, and health professional schools, to name a few. Similarly, a varieW of service providers must be involved, including grass roots gay organiza- tions, teachers, health care providers, community groups in minority neighborhoods, outreach workers, and others who can effectively reach a target Donula- tion. --a ~a-- r~r-~- Charles E. McKinney, education director of the Gay Men's Health Crisis, characterizes AIDS educa- tion this way: Education as a life saving strategy in the fight against AIDS is more than a public service announcement recommending sexual abstinence, saying "No!~ to drugs, or using condoms. It is multifaceted, omnidirectional, relentless, and immediate. It is round the clock, in the streets, in recreational facilities, churches and syna- gogues, social clubs, homes, schools and local HIV Infection and AIDS 153

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supermarkets. It is where the people are, whenever they are there. It is communicating in a common language and level of literary. It is nonjudgmental. It is sensitive to the cultural differences, patterns of speech, rituals and mores of diverse populations that make up a com- munity. (#453) Many witnesses emphasized the importance of educating people about AIDS, HIV transmission, safer sex, and needle-sharing behavior; but there was also testimony reflecting the gaps in knowledge about how to provide education that will result in health- promoting behaviors. Education must be grounded in an understanding of health behavior and attitudes in the high-risk populations, according to witnesses; homosexual men and IV drug users, for example, have different help-seeking behaviors. However, informa- tion about the ways to implement educational efforts is incomplete. Lew Gilchrist of the University of Washington says more knowledge is needed about how to construct effective education messages. We have a beginning technology. We know, for example, that public response to fear messages is not optimal. It results in short-term behavior change, but no behavior change over the long run. We need to expand our technology for defining and evaluating health education. (~691) Yet regardless of the audience, site, or specific message, all AIDS educational programs should teach "mercy, compassion, and the insidious effects of stigma and prejudice," say Linda Hawes Clever of the Pacific Presbyterian Medical Center. (#803) MANDATORY TESTING, REPORTING, AND CONTACT NOTIFICATION Most witnesses supported voluntary testing programs to inform individuals about their own HIV status; a few suggested that mandatory testing may be appro- priate in certain cases. Glenn Heckmann, Executive Director of the Texas Board of Pardons and Paroles, for example, said that all inmates entering or leaving penal institutions should be tested. He also noted, however, that placement for those that are HIV posi- tive has been very difficult and urged the development of more community resources for these people. (#093) Two overriding concerns in both testing and 154 Healthy People 2000: Citizens Chart the Course contact notification among all populations, including prisoners, are confidentiality and documentation. (#215) Suggestions were made that the screening of new inmates be forestalled "until civil liberty protection, segregation policy, and housingimedical care issues have been addressed." (~591) Franklyn Judson of the Denver Public Health De- partment calls for reporting HIV-positive individuals. Noting that Colorado requires such reporting while providing strong guarantees of confidentiality, Judson says that the law has not had the adverse outcomes some feared. There are no indications that human rights violations have occurred and no evidence that reporting has discouraged at-risk individuals from being tested. The importance of confidentiality in reporting was stressed. (~3 76) The controversial topic of contact notification also came up in testimony. A few witnesses favored mandatory contact of all people named as sex or needle-sharing partners of people with a positive HIV test. According to Charles Mahan of the Florida Department of Health and Rehabilitative Services, an objective for the year 2000 should be the notification of 75 percent of such contacts. (~138,} Although most witnesses did not include mandatory partner notification in the preventive strategies proposed - ue to difficult in obtaining names, the cost of tracing contacts, and possible negative reaction to a man- datory effort (#787~olunta~y identification of partners by HIV-infected individuals was seen as a valid and important objective. SPECIAL POPULATIONS Many witnesses addressed education, testing, and counseling needs in the context of specific target populations at risk. The groups discussed most frequently were school children, minorities, drug users, homosexuals, and women of childbearing age. Children and Adolescents A large number of witnesses emphasized the importance of comprehensive education programs in the schools. According to Texas Commissioner of Health Robert Bernstein and others, AIDS education should be a part of the regular health education curricula, beginning in the early grades. (#020; #273) Education should be explicit and should teach stu- dents how to prevent HIV infection, including the role of condoms and abstinence. According to several witnesses, to be effective, this education must be part

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of a comprehensive health education program that establishes the relationship among personal decision making, self-esteem, behavior, and health. f#2 73; Minorities #591) Some witnesses favor standardizing the material so that the quality and uniformity of the information presented are assured. (~273) Kizer calls for standardized federal AIDS instructional programs: This would ensure that any individual presenting information to the public on AIDS has a minimum level of understanding of the AIDS disease, as well as ongoing access to updated information." He also suggests that these programs include ethnically sensitive, targeted subcomponents for specific populations. ~591) Adolescents were identified frequently as a critical target group. Ralph DiClemente of the University of California, San Francisco says that the limited data available indicate that adolescents are not well-in formed about the prevention of HIV infection. He recommends required courses in schools, with the following goals, and makes some specific suggestions about their content. The objective of HIV prevention programs should be to encourage health-promoting behaviors arid eliminate or reduce high-risk sexual and drug behaviors. Adolescents cannot be coerced into changing behavior patterns; but, by providing clear and developmentally appro priate information, we can provide an "informa tional impetus" which, as a direct consequence, may result in the postponement, reduction, or elimination of high-risk behavior. (#273) However, information alone does not change behavior, says Kizer. Programs must "target denial, perceived susceptibility, motivation, self-efficacy, and provide social support for change." (#591) Further more, they must target those norms that sanction unsafe sex and drug use behavior, including alcohol use and needle sharing. (~273; #591) Some of the suggested objectives for the year 2000 were framed in terms of the proportion of schools that include education about AIDS or the percentage of students informed about the disease and its trans mission. In some testimony, witnesses addressed the need for broad-based education about all sexually transmitted diseases, including AIDS. The American School Health Association, for instance, suggests that current federal funding for AIDS education be used for a broader program aimed at all sexually transmitted diseases; that testimony is summarized in Chapter 20. Minorities have disproportionately high rates of HIV infection and AIDS, and several speakers called for expanded efforts to reach these groups. This issue is discussed further in Chapter 6. The prevalence of AIDS among Blacks and Hispanics is more than twice that among Whites, according to Frank Marsh of the University of Colorado Health Sciences Center,3 and if AIDS becomes endemic in the heterosexual community, it will show up in the urban minority community first. (#677) Rudolph Jackson of the Morehouse School of Medicine says that minorities are generally unaware of important information about AIDS, that programs should place a higher priority on providing culturally sensitive information about AIDS to minority com- munities, and that minority members should be involved at all levels in planning those efforts. Grass roots community organizations can be effective in reaching this population and should get additional funding for that purpose, he added. Jackson also called for research to determine the underlying causes or behaviors that place minorities at greater risk for AIDS. (#252) Although some Black and Hispanic preachers are unwilling to become involved in educa- tion about sex or the use of sterile needles, Leon Eisenberg of Harvard University suggests that "the goal of minorities cannot be achieved without par- ticipation by the church. (~787) Marsh recommends that a central clearinghouse be created for collection and dissemination of culturally relevant materials. (~677) Intravenous Drug Users The urgent and growing problem of AIDS among IV drug users was raised often. According to statistics from the Centers for Disease Control (CDC) cited in the testimony, an estimated 900,000 Americans inject illicit drugs at least once a week; another 200,000 do so occasionally.4 1-he CDC has estimated that as of the end of 1987, 250,000 to 300,000 IV drug users in this country were infected with the HIV virus.s (#609J Many witnesses expressed concern about the epi- demic spreading from this community into the larger population. (~442; #609; #677) Caswell Evans of the Los Ankles County Department of Health HIV Infection and AIDS 155

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Services emphasizes that preventive measures must be taken immediately if such transmission is to be stemmed. We're beginning now to see the presence of the second wave of AIDS patients as represented by the IV drug-using community, which will certain- ly vastly change our approach to AIDS. If we're going to stop the spread of HIV in the second wave, we've got to target that group of seroneg- ative IV drug users and concentrate on that group now. We've got a limited window of opportunity, and if we're not effective at this point, HIV is going to spread dramatically from that community. (#286) Stephen Joseph, New York City Health Commis- sioner, and Deborah Prothrow-Stith, Massachusetts Commissioner of Public Health, both cite the extreme shortage of drug treatment services for those who cannot pay as a serious obstacle to halting the con- tinued spread of HIV infection. (~437; #735) One of the most frequently mentioned objectives for the year 2000 is that treatment and rehabilitative services be available to all IV drug users. However, even if adequate drug treatments were available, about half of the addicts would probably decline treatment, accord- ing to Irma Strantz, Director of the Drug Abuse Program Office at the Los Angeles County Depart- ment of Health Services. She says that education and outreach efforts targeted at drug users could increase the demand for treatment. Strantz emphasizes that drug treatment can save society money. (#609J Oth- er witnesses note the importance of continued re- search into better ways to treat drug addiction. (#442) Strantz made many suggestions aimed at aggressive- ly combating illicit drug use and AIDS among IV drug users. Her suggestions include putting outreach/ education workers in every area that has a problem with illicit drugs. These workers would distribute vouchers for drug treatment centers as an incentive to obtain treatment quickly and would offer transporta- tion to HIV testing and counseling sites. Risk reduc- tion kits, including condoms and bleach for cleaning needles would be distributed along with culturally relevant material in appropriate languages. Strantz also called for drug use prevention programs in the many settings where youth can be reached before they become addicted. (#609) Other techniques suggested for reaching IV drug users included making HIV prevention education and testing available 156 Healthy People 2000: Citizens Chart the Course routinely in all drug and alcohol treatment clinics, as well as in STD clinics (#591~; providing sterile ~works" to all users (~787~; and encouraging "self- organizations" among IV drug users akin to those among gays (~787~. However, "the real solution, says Howard Freeman of the University of California, Los Angeles, "is drug control, not cleaning up a few users.n (#792) Mothers and Infants The importance of controlling the spread of HIV infection among drug users also was underscored by witnesses who addressed the growing problem of perinatal transmission of AIDS. There is not much basis for optimism about the future scope of the problem, says Richard Schwarz of the State University of New York Health Science Center at Brooklyn, who represented the American College of Obstetricians and Gynecologists. (~442) According to a 1987 survey, 1 infant in 61 born in New York City tests seropositive for HIV infection.6 On the subject of preventing the perinatal trans- mission of AIDS, witnesses addressed the importance of making education, screening, and counseling availa- ble to women of childbearing age. Some witnesses called for routine testing of all pregnant women with risk behaviors for HIV infection. (#3 76J According to others, Medicaid should again finance abortions for low-income women who test positive for AIDS or HIV infection. (~449) At-risk Professionals Health care providers and other workers such as firemen, morticians, and barbers must also be edu- cated about their own risks and the appropriate precautions. The American Association of Occupa- tiona1 Health Nurses calls for companies to establish policies protecting at-risk workers, particularly health care workers, while also protecting the rights of HIV- positive employees. (~558) Others emphasize that the workplace is an important site for education about AIDS. (#619J IMPLEMENTATION Several testifiers addressed the need for more data on the prevalence of HIV infection in high-risk sub- groups and the general population. William Lafferty of the Washington State Department of Public Health, for instance, stresses the need for primary

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prevention to go beyond data on symptomatic illness; data on HIV prevalence and incidence in both the general and target populations are required as well. Studies of the size, sexual behaviors, drug use pat- terns, and so on of high-risk populations are seen as essential to prevention efforts. (~698) Studies and more accurate data on the prevalence of homosexual and bisexual behavior also are needed; current Public Health Service estimates are based on data that are decades old. (#787) Many proposed objectives were expressed in terms of a specific reduction in the prevalence of HIV infection or AIDS, for example, the percentage of IV drug users who would test positive for HIV infection. Some witnesses suggested a percentage of the popula- tion that should be practicing safer sex or needle behavior or should be well informed about HIV and its transmission. f#286J lithe American Medical Association, for example, says that by the year 2000, the incidence rate of HIV infection should be half of that in the first representa- tive national sampling. Its testimony includes specific REFERENCES 1. Centers for Disease Control: HIV/AIDS Surveillance, Atlanta: April 1990 goals for subgroups: among sexually active males, the incidence of HIV infection should be reduced to ~ percent of the present rate; among needle-sharing drug users, it should be reduced to 50 percent of the present rate; among sexually active partners of those likely to be infected, it should be reduced to 10 percent of the present rate; and among newborns of high-risk parents, it should also be reduced to 10 percent of the present rate. (#095) However, as many testifiers noted, setting quantifi- able goals for limiting the spread of HIV infection and AIDS in the next decade is a tricly business. Much depends on the path this epidemic takes and whether preventive vaccines, cures, or other events could drastically alter its course. Witnesses proposed continued research aimed at vaccines and better therapeutic agents, and noted that soon treatment will be provided for those who are HIV positive but asymptomatic. In the meantime, however, if progress is to be made in halting the spread of HIV infection and AIDS, it will have to come from preventive strategies, according to witnesses. 2. Centers for Disease Control: Estimates of HIV prevalence and projected AIDS cases: Summary of a workshop, October 31-November 1, 1989. Morbid Mortal Wkly Rep 39(7):110-119, 1990 3. Centers for Disease Control: Human immunodeficiency virus infection in the United States: A review of current knowledge. Morbid Mortal Wkly Rep Supplement 36(S6):1-48, 1987 4. Centers for Disease Control: op. cit., reference 2 5. Ibid. 6. Lambert B: "One in 61 babies in New York City has AIDS antibodies study sassy New York Times: At, January 13, 19~ TESTIFIERS CITED IN CHAPTER 19 020 Bernstein, Robert; Texas Department of Health 093 Heckmann, Glenn; Texas Board of Pardons and Paroles 095 Hendee, William; American Medical Association 138 215 Turnock, Bernard; Illinois Department of Public Health 252 Jackson, Rudolph; Morehouse School of Medicine 273 DiClemente, Ralph; University of California, San Francisco 286 Evans, Caswell; Los Angeles County Department of Health Services 376 Judson, Franklyn; Denver Public Health Department 437 Joseph, Stephen; New York City Department of Health Mahan, Charles; Florida Department of Health and Rehabilitative Services HIV Infection and AIDS 157

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442 Schwarz, Richard; State University of New York Health Center at Brooklyn 449 Santee, Barbara; Women and AIDS Resource Network 453 McKinney, Charles; Gay Men's Health Crisis (New York) 558 Babbitz, Matilda; American Association of Occupational Health Nurses 591 Kizer, Kenneth; California Department of Health Services 609 Strantz, Irma; Los Angeles County Department of Health Services 619 Schramm, Carl; Health Insurance Association of America 677 Marsh, Frank; Universitr of Colorado Health Sciences Center 691 Gilchrist, Lew; University of Washington 698 Lafferty, William; Washington State Department of Public Health 735 Prothrow-Stith, Deborah; Massachusetts Department of Public Health 787 Eisenberg, Leon; Harvard University 789 Carpenter, Charles C. J.; Brown University 792 Freeman, Howard; University of California, Los Angeles 803 Clever, Linda Hawes; Pacific Presbyterian Medical Center (San Francisco) 158 Healthy People 2000: Citizens Chart the Course