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AIDS: The Second Decade (1990)

Chapter: Summary

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Suggested Citation:"Summary." National Research Council. 1990. AIDS: The Second Decade. Washington, DC: The National Academies Press. doi: 10.17226/1534.
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Suggested Citation:"Summary." National Research Council. 1990. AIDS: The Second Decade. Washington, DC: The National Academies Press. doi: 10.17226/1534.
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Suggested Citation:"Summary." National Research Council. 1990. AIDS: The Second Decade. Washington, DC: The National Academies Press. doi: 10.17226/1534.
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Summary More than 115,000 persons in the United States have been diagnosed with acquired immune deficiency syndrome, or AIDS, since the illness was first identified in this country almost 10 years~ago. As we enter the second decade of the epidemic, residual problems from the first decade continue to compel the nation's attention. Moreover, new issues are emerging that call for immediate consideration and action. The dimensions of the epidemic are sizable and will continue to grow, presenting enormous challenges to the nation and to those individuals who must track its course, design and implement intervention programs, and provide medical care and other services. This report reviews the course of the epidemic and its current status. It also discusses prevention activities designed to curb the future spread of the human immunodeficiency virus (HIV) and offers recommendations regarding potential avenues for achieving this goal. This report was prepared by the Committee on AIDS Research and the Behavioral, Social, and Statistical Sciences, which was established in 1987. The formation of such a committee within the National Re- search Council reflected a growing awareness that understanding HIV transmission, facilitating behavioral change to prevent further spread of infection, and coping with the social consequences of the epidemic raise questions that properly lie within the domain of the social, behavioral, and statistical sciences. At the request of the Public Health Service (PHS) and with support from the Russell Sage and Rockefeller Foundations, the committee reviewed estimates of the extent of HIV infection in the U.S. ~ This work builds on the past and ongoing work of the Institute of Medicine (IOM)/Naiional Academy of Sciences (NAS). The IONVNAS has produced two major reports that focused on public health, bio- logical research, and medical care issues: Confronting AIDS: Directions for Public Health, Health Care, and Research (1986) and Confronting AIDS: Update 1988 (both published by the National Academy Press, Washington, D.C.).

2 ~ AIDS: THE SECOND DECADE population and the patterns of sexual behavior and drug use that trans- mit HIV. It also reviewed intervention strategies that showed promise of producing behavioral change to slow the spread of HIV infection in the general population. In 1989 the committee issued its first report, AIDS, Sexual Behavior, and Intravenous Drug Use.2 The committee's studies dunng this most recent phase of its efforts have considered the evolving shape of the epidemic, focusing attention on populations and research topics that will be of increasing importance in coming years. After discussions with liaison representatives of the PHS, the committee accepted the following as its charge: to review the changing nature of the epidemic in the United States and the needs of the diverse populations being affected by it, such as adolescents and women (including female prostitutes); to descnbe behavioral research and intervention strategies that could assist in protecting the blood supply; and to review a selected set of methodological issues that affect the quality of data collected in surveys of drug use and sexual practices. This volume is the committee's response to its charge. In preparing it, the committee was assisted by a specially appointed Panel on AIDS Interventions and Research.3 In continuing to monitor the progression of the epidemic and the nation's response, the committee notes several important changes in this evolving and enduring health problem. New populations that are at risk are emerging from populations that heretofore have not been touched directly by AIDS and from subgroups of populations that are already known to bear infection. Moreover, shifts in patterns of risk-associated behaviors are now becoming apparent. For example, although the threat of disease transmission posed by intravenous (IV) Mug use has been recognized since the early years of the epidemic, there is now a growing appreciation of the indirect hazards (e.g., sexual risk taking in the context of drug use) posed by drugs that are not injected, such as the form of cocaine known as crack. There is also increasing awareness of the need to maintain risk-reducing behaviors once they have been initiated. The persistence of risk in the environment and the problem of relapse mandate a long-term commitment to prevention. 2 turner' C. F., Miller, H. G. and Moses, L. E (1989) AIDS, Sexual Behavior, and Intravenous Drug Use. Report of the National Research Council Committee on AIDS Research and the Behavioral, Social, and Statistical Sciences. Washington, D.C.: National Academy Press. 3 The committee also benefited from the work of a second panel, which reviewed methodologies for evaluating the effectiveness of AIDS prevention programs. The panel's report, Evaluating AIDS Pre- vention Programs, Expanded Edition (S. L. Coyle, R. F. Boruch, and C. F. Turner), will be published in mid-1990 by the National Academy Press.

SUMMARY ~ 3 In the second decade of the epidemic, new pockets of infection are being identified in more diverse geographical locations in the United States, and the changing distributions of AIDS cases and HIV infection indicate that the disease is becoming more a generalized American phe- nomenon and less a bicoastal, urban entity. Moreover, the pattern of infection is also beginning to reveal some subtle shifts in the distribution of AIDS cases across transmission categories; the proportion of cases attributable to same-gender contact has decreased slightly as the propor- tion ascribed to heterosexual contact has grown. Even the characteristics of the disease itself are somewhat in flux. With the development of drugs capable of decreasing morbidity associated with HIV infection and prolonging the lives of those infected with the virus, the disease takes on some of the characteristics of a long-tenn rather than an acute illness. The changing locus of the epidemic, the new populations at risk, and the emerging longer term nature of the disease point to the need for new outreach and intervention strategies to prevent further spread of infection, as well as services and treatment to assist those who are already infected. The first two sections of this summary (and Chapters 1 and 2 of the full report) describe the evolving nature of the epidemic and the range of prevention activities that are being implemented to retard the spread of HIV in the U.S. population. A particular focus of these sections is the increasing burden of HIV infection and AIDS among women. The next three sections (Chapters 3, 4, and 5, respectively, of the full report) review three domains of particular interest: the ways in which HIV infection is affecting adolescents and female prostitutes, and the challenge of protecting the blood supply while simultaneously ensuring the adequacy of that supply. The final section of the report (Chapter 6) reviews factors that affect the quality of data collected in surveys of AIDS-related behaviors. Although many of the specific issues raised in this report are persist- ing problems from the first decade of the epidemic, it is important to note that some predicted problems have not emerged. For example, despite considerable speculation regarding the role prostitution could play in a self-sustaining heterosexual epidemic, the data presented in Chapter 4 do not support the notion that HIV infection is an occupational disease of sex workers. Rather, the infection found among female prostitutes appears to have been acquired through IV drug use or from sexual con- tact with a husband or boyfriend, and, in several surveys, substantial proportions of prostitutes reported condom use with paying customers. Moreover, in a field where there have been few real successes, the story of the blood supply stands out. The development of HIV antibody tests,

4 ~ AIDS: THE SECOND DECADE which when coupled with behavioral interventions to enhance appropriate blood donor deferral, has dramatically reduced the number of infections associated with the blood supply. However, as donor deferral becomes more effective, there will be fewer individuals to contribute to the blood supply, thus raising additional problems concerning adequate supplies. The committee cautions that encouraging results and promising situa- tions should not lead to complacency. The lessons learned from the first decade of the epidemic warn us of the need for vigilance as the patterns of disease shift and new problems emerge. THE CHANGING EPIDEMIOLOGY OF AIDS IN THE UNITED STATES Despite the greater diversity now recognized to exist among at-nsk and infected populations, gay men still account for the majority of AIDS cases in this country. Yet more and more cases are reportedly associated with IV drug use and heterosexual transmission, and this shift has resulted in a noticeable increase in the number of women who are affected by the AIDS epidemic. Among adolescents in contact with the military (either as applicants or on active duty), rates of HIV infection among females are comparable with those for males. Gender panty in seroprevalence (i.e., prevalence of HIV infection) for this population indicates that for some groups women will be bearing a larger share of the AIDS burden in the future. Although the majority of female AIDS cases have been attributed to IV drug use, substantial numbers of infected women report heterosexual contact with an infected male IV drug user. Thus, injection of illicit sub- stances poses direct and indirect threats to women in this country. The stabilization of infection rates seen among drug users in some cities (e.g., New York, San Francisco, Amsterdam) affords some hope that inter- ventions directed toward this population can be effective.4 Nevertheless, stable rates of infection in selected cities do not signify the elimination Of viral transmission. Other areas of the United States, as well as for- eign countnes, are seeing rapid increases in the incidence of infection among IV drug users. The mobility of this population coupled with the 4For some groups at highest risk for HIV infection, stable rates signify that all vulnerable individuals are already infected, a phenomenon known as saturation. This phenomenon does not appear to explain stable rates in New York City, however, where approximately 50 percent of IV drug users are esti- mated to be infected. If saturation had occurred, one would expect to see higher seroprevalence rates. For example, approximately 90 percent of IV drug users in New York City have been infected with hepatitis, a virus that is transmitted in the same manner as HIV and appears to have reached saturation in this population.

SUMMARY | 5 persistence of the behaviors that transmit HIV (namely, sharing injection equipment) indicates that the potential for very rapid spread still exists. Furthermore, growing awareness of the indirect threat posed by drugs such as crack and alcohol supports the notion that HIV risk related to drug use now goes beyond the use of contaminated injection equipment. Although crack and alcohol do not directly transmit HIV, researchers note that both Mugs are associated with high-nsk sexual practices and thus confer an indirect risk for the acquisition and transmission of the virus. The rapid emergence of new, drug-related threats highlights the need for vigilance regarding changing patterns of transmission. Thus, the committee recommends that the Public Health Service establish mechanisms across its agencies for rapid identification and assess- ment of the relationship of new drug use problems to the spread of HIV. At present it is clear that crack use and its associated unsafe sexual activity represent a potentially important new mode of HIV trans- mission in the United States, but it is unclear how large an impact this mode might have. The committee recommends that the Public Health Service support additional research on crack use, including its epi- demiology, its relationship to sexual behavior, strategies to reduce its occurrence (both initiation of use and continuance among low- and high-frequency users), and methods for facilitating change in the sexual behavior of persons who continue to use crack. Among the changing facets and aspects of the epidemic, one epidemi- ological trend has remained disturbingly constant. Black and Hispanic men and women continue to be overrepresented in every AIDS risk cate- gory. The committee urges a renewed commitment to providing effective AIDS prevention programs for at-nsk minority individuals. Therefore, the committee recommends that the agencies of the Public Health Service encourage and strengthen behavioral science research aimed at understanding the transmission of HIV in various black and His- panic subpopulations, including men who have sex with men, drug users and their sexual partners, and youth. The committee further recommends that the PHS ~levelop plans for appropriate interven- tions targeted toward these groups and support the implementation of intervention strategies (together with appropriate evaluation com- portents) in both demonstration projects and larger scale efforts. The evolutionary, dynamic nature of this epidemic imposes additional demands on surveillance data collection. High-quality data on changing rates of risk-associated behavior and HIV infection are needed to track the course of the epidemic and to evaluate the effectiveness of intervention efforts to stop its progression. To facilitate the Centers for Disease

6 ~ AIDS: THE SECOND DECADE Control's (CDC) ongoing efforts to improve its AIDS-related data collection systems, the committee recommends that the agency initiate a systematic review of current programs. This effort should draw on the expertise of both CDC staff and outside experts. PREVENTION: THE CONTINUING CHALLENGE The first decade of the AIDS epidemic in this country brought consid- erable progress in solving the biological and epidemiological puzzles of AIDS and HIV infection. The causative agent was discovered, and serologic tests to detect infection were devised, produced, and imple- mented. In addition, drugs were developed to treat both the underlying viral infection and the opportunistic infections that are the hallmarks of the disease. Yet despite this progress, the epidemiological data reveal a steady progression of HIV-related morbidity and mortality, in part be- cause the development of HIV prevention strategies has not kept pace with He growing dimensions of risk. Effective intervention strategies are needed to sustain healthy behavioral patterns in individuals who are not currently at risk and to facilitate change among individuals who are. The committee finds that ongoing efforts fall far short of the magnitude of in- tervention needed, given the current prevalence of infection and evidence of continued nsk-associated behavior among many of the groups at risk for AIDS. AIDS Prevention Challenges in the Coming Decade At the beginning of the epidemic, interventions to prevent the spread of HIV infection focused pr~manly on adult gay men; subsequent prevention efforts encompassed the population of IV Hug users. Today, that focus requires redefinition and expansion once again as changing epidemio- logical patterns reveal greater diversity among at-risk groups. A further requirement is to consolidate study findings from cohorts of gay men and to incorporate relevant findings into the design and development of prevention activities for other groups. Unfortunately, an understanding of such lessons has been hampered by a host of methodological com- plications that preclude meaningful cross-study comparisons. Therefore, the committee recommends that the Public Health Service assemble and summarize data reported by gay men in PHS-funded studies re- garding seroprevalence, seroconversion, and high-risk behavior and determine what conclusions can be drawn from the research. Of particular concern to the committee are the epidemiological data indicating that HIV infection is spreading to disparate subpopulations of women. The diversity of the at-nsk female population mandates the

SUMMARY ~ 7 development of multiple approaches to prevent both horizontal transmis- sion from sexual and Hug use partners and vertical transmission from a mother to her infant. In general, the best way to prevent vertical transmission is to prevent infection in women of childbearing age. Prevention efforts focused on women during the first decade of the epidemic relied heavily on testing and counseling, but several studies have shown that the information provided to women by such a strat- egy did not necessarily prevent transmission. Therefore, the committee recommends careful review of the goals of testing and counseling programs for women of childbearing age and the implementation of research efforts to ascertain the effect of such programs on fu- ture risk-taking behavior. Additional, innovative strategies are clearly needed to prevent vertical transmission; there may be important lessons to be learned from existing programs that have sought to prevent other vertically transmitted diseases, such as genetic disorders. The committee recommends that the Public Health Service convene a symposium of experts in genetic counseling to consider the potential contribution of this field's expertise and experience to the design and implementa- tion of counseling programs for HIV-infected women and to identify research opportunities in this area. In its first report, the committee recommended that knowledge con- cerning the efficacy of intervention programs be built in a systematic fashion through the use of planned variations of key program elements accompanied by rigorous evaluation. This process is admittedly quite time-consuming, but unfortunately there is no shortcut to the accumu- lation of such cntical information. Behavioral interventions are still the only available means of disease containment, and the committee an- ticipates that the need for well-designed, carefully implemented, and thoughtfully evaluated intervention efforts will not decrease over the course of the next 10 years. Therefore, the committee reiterates its earlier recommendations and in addition recommends the following: · that the Public Health Service encourage and support behavioral research programs that study the behaviors that transmit HIV infection and that the PHS develop and evaluate mechanisms for facilitating and sustaining change in those behaviors; · that intervention programs incorporate planned varia- tions that can be carefully evaluated to determine their relative effectiveness; · that the PHS regularly summarize the data derived from currently funded behavioral and epidemiological

8 ~ AIDS: THE SECOND DECADE research on AIDS (in terms of incidence of infection arid high-risk behaviors) to determine intervention priorities for various subpopulations at risk; and · that all agencies of the PHS that are currently funding intervention programs and evaluation research regularly summarize the data derived from these studies to deter- mine which, if any, programs can be recommended for wider dissemination. There is some indication that AIDS prevention activities to date have, at least In part, achieved their goal; significant risk reduction has been reported among subsets of gay adult mates and IV drug users. Yet segments of every at-r~sk group continue to practice unsafe behaviors. Some have not yet initiated change; others have not been able to sustain changes initiated earlier. The committee recommends that the Alcohol, Drug Abuse, and Mental Health Administration focus research ef- forts on AIDS-related relapse prevention, including the determinants of such relapse and the role that alcohol and other drugs play in the return to unsafe sexual and injection practices. The inconsistent use of condoms is a common theme that cuts across all populations associated with this epidemic. Gay men, IV drug users, and female sexual partners of infected or at-risk individuals have all reported problems in initiating or maintaining condom use, despite clear evidence of perceived risk. In its first report the committee urged widespread availability and promotion of the use of condoms (with sper- micides) as a means for preventing sexually transmitted HIV infection. The epidemiological data show, however, that sexual transmission of the virus continues to be a major route of infection, and self-reported data on risk taking indicate that more research is needed to understand how to help people take preventive action against sexually transmitted HIV infection. The committee recommends that the Public Health Service fund research on condoms to achieve the following objectives: · understand the determinants of condom use for the di- verse populations at risk for sexually transmitted HIV infection; · improve condom design and materials to make them more acceptable to users; and · develop interventions to promote their consistent use. Regardless of belief in the efficacy of condoms to prevent HIV transmission, not all subpopulations at risk will be able to implement this means of protection. Women in particular often find condom use

SUMMARY ~ 9 problematic. Not only do condoms require the cooperation of the male partner but they may also require substantial changes in the attitudes and behaviors of some women. The gravity of the AIDS epidemic calls for other methods of protection that are more "user friendly" (i.e., more attractive, easier to purchase, and easier to use) and that can be uni- laterally employed by women. The committee recommends that the Public Health Service support research to develop protective mea- sures other than condoms for preventing HIV transmission during sexual contact~pecifically, methods that can be used unilaterally by women and methods that will be acceptable to both men and women who do not currently use condoms. The partnership between technol- ogy and the behavioral sciences has succeeded in devising mechanisms to protect the blood supply (see Chapter 5 of the report). Similar partner- ships are needed to develop innovative means for protecting individuals from sexual transmission of the disease. Impediments to Improved Intervention AIDS prevention programs must identify, contact, and help at-r~sk indi- viduals to assess their level of risk and access appropriate services. Pro- viding AIDS prevention also involves first facilitating and then sustaining behavioral change. Delivering programs to at-nsk individuals becomes extremely difficult if people believe that seeking help may threaten their jobs, housing, and supportive relationships. During the first decade of this epidemic, effective interventions and research were compromised by difficulties in identifying and reaching those most in need. Now, it is even more crucial to reach infected individuals because there are poten- tially beneficial prophylactic treatments that may forestall the progression of disease. Antidiscr~mination legislation has been proposed by several organizations to provide the institutional underpinnings necessary to en- able individuals to redress inequities and protect those who would seek care and other AIDS-related services. The committee is gratified to see that the federal antidiscnmination measures urged In its first report and recommended by the President's Commission on the HIV Epidemic are under active consideration. It would point out, however, that this legisla- tion alone is unlikely to ameliorate all of the conditions associated with discrimination in this country. For example, legislation may protect the rights of HIV-infected children to education but cannot prevent hostile encounters with the community. A separate pane] of the committee is currently considering methods to monitor and measure the social impact of the epidemic; the panel's report is expected to be released in 1991.

10 AIDS: THE SECOND DECADE The progress made in instituting antidiscnmination provisions, how- ever, cannot obscure the fact that other hurdles remain in the path of improved intervention. The financial biers to health care that have im- peded preventive care for other health conditions also affect individuals seeking AIDS-related services. BaITiers to these services may be espe- cially daunting for women, in particular women who need prenatal care or treatment for Hug use. Moreover, even delivenng information to those most in need is sometimes problematic, in part because societal attitudes continue to hinder the implementation and evaluation of promising inter- ventions. A significant controversy has surrounded the appropriate level of sexual explicitness in AIDS prevention information and the degree to which these interventions should emphasize the erotic. Political debate abounds regarding the propriety of using public monies to support the development of sexually explicit matenals, despite preliminary evidence that, for some populations, they have a degree of effectiveness. Programs to provide IV drug users with stenie needles have also been stymied. Previous reports on AIDS from the National Academy of Sciences and the Prostitute of Medicine recommended that the U.S. government sponsor research on syringe exchange programs as a means of reducing the spread of HIV infection in the drug-using population. Evaluation of ongoing efforts abroad have found that participation in syringe exchange programs is associated with the reduction but not the elimination of behaviors that can transmit HIV and that syringe exchanges do not lead to any detectable increase in illicit drug injection, either among current users or by new injectors. The U.S. Department of Health and Human Services has considered the types of research that would be needed to evaluate the impact of syringe exchange programs on the spread of HIV, but it has not officially determined whether it will support such research now or in the future. There is a general! fear expressed by many policy makers that explicit messages concerning stenie injection equipment and condom use will result in increased rates of {V drug use and sexual intercourse. Yet what evidence there is from venous intervention programs suggests otherwise: having the information and the means to protect oneself from a deadly disease is likely to result in protective action against AIDS, as well as in generalized increases in healthy behaviors (e.g., seeking drug treatment) among people who are already engaging in risky activities. Furthermore, inflation and services do not appear to entice the uninitiated into risk-associated actions. The committee believes that the time has come to commit sufficient resources to the task of collecting data that would permit an assessment of whether current intervention strategies, including

SUMMARY ~ 1 1 needle exchange programs, effectively decrease risky behaviors and the subsequent spread of HIV. To continue to rely on hunches and suspicions rather than on data gives too much credence to guesswork and may arbitrarily obstruct a promising course of action for preventing the spread of the epidemic. ADOLESCENTS The committee finds no credible evidence that He AIDS epidemic will cease in the foreseeable future in this country. As a result, prevention efforts remain cntically important. In terms of the adolescent population, the committee believes that intervention efforts will be most effective if the programs reach teens before they begin practicing the behaviors that put them at risk. Because patterns of both health behavior and risk taking are often established during the teenage years, intervention efforts for adolescents offer the hope of protecting our youth and preventing future problems in the adult population. It is important to note that not all teens are equally at risk for HIV infection. Some, by virtue of their low level of risky behavior or because of the absence of the virus among their potential partners, will remain uninfected. However, the available data on HIV seroprevalence indicate Hat there are presently localized pockets of the teen population In which the rates of infection are relatively high. Findings from CDC's neonatal surveillance activity (i.e., anonymous antibody testing of newborn in- fants)5 indicate, for example, that almost ~ percent of black teenagers who delivered children in New York City during 1988 were infected with HIV. The prevalence of HIV infection among Hispanic teenage mowers is almost as high. Data from serosurveys of nonprobability samples of hospital patients and data on infection rates among applicants for military service confirm the fact that the REV virus is seeded In the adolescent population, albeit at varying rates. Yet these sources of information are limited; consequently, there is a paucity of appropriate data available to scientists for monitoring He spread of HIV in He teen population. To provide better information about HIV infection and AIDS among adolescents, the committee recommends that the Centers for Disease Control make available to the research community AIDS-related data that permit separate consideration of teenagers and other age groups. Specifically, the committee recommends that: SThis testing provides unbiased estimates of the prevalence of HIV infection among childbearing women because infants circulate maternal antibody during the first months of life whether or not they are actually infected.

12 ~ Alas: THE SECOND DECADE · data on AIDS cases be macie available in a form that permits tabulation by specific ages or by narrow age groups (these data should be as complete as possible without threatening inadvertent disclosure of the iden- tity of any individual case); every state that participates in the neonatal surveillance activity include the age of the mother coded in years or by narrow age group; and CDC provide Elate from its family of surveys6 by specific ages or in narrow age groups, as well as by race, gender, and ethnicity. Behaviors That Put Adolescents at Risk As noted above, not all teens are at risk for HIV infection. The vast majority of very young teenagers, as well as most older adolescents who have not begun sexua' intercourse and do not inject drugs, have little to wonv ~hr~lit Blat ~ c' +uA^~ ~ ~ _ _ - 1__ _ ~ _ , ~ ~ - ——A ~~ ~ ~~ ALL ~ 5~ ~ ~ r~ ~ ~ v ~ ~ ~ ~ ~ _ ~ ~ ·~ ~ A I A ~~ ~ ~~ ~~ —_ a_ of_ _ AL · _ 1 ~ ~ ^ ~ ^~ AL V1LA~A~ lll~JVC; LO ulIIe~enl E;~;1~AV1111; 1ocauons' or engage in new behaviors, their relative risk level may change. Currently, tAhAe adolescent population contains pockets of adolescents whose behavior puts them at relativeAv high Nick for ~rn~lirin~ HIV infection. ~ ~ ~~ SAABS, Sexual Behaviors. By age 19 most teenagers .wh~ther hlarlr ^+ oh; ·_~1A __ ¢~ W111~' once OA' rename report that they have enactor i" O^~] ;~- IA-nl11~^ The :_ _17^ I. '1~ ~lQ~ulLlul1 of teenagers who report intercourse at an early age is not small. Roughly one-third of 15-year-old boys report having en- .ga~ed in sexual inter~.nllr~- ~nr1 91 I_ ~~~ ~ ~ _, ~,~ ~~ ~1~11~ ~1 ~C;~;lla,~e girls report sexual _ ~ . . . _ . . . intercourse by their 16th birthday. The available data, although sparse, indicate that a substantial fraction of young people engage In sex wig multiple partners during their teens, and although condom use among teens increased during the l980s, the majority of teens do not routinely 6The CDC's family of surveys collects data on HIV infection from several subpopulations, including clients attending drug treatment, STD, tuberculosis, and prenatal clinics, patients at general hospitals, and newborn infants. With the exception of the survey of infants, all of the other surveys rely on nonprobability samples. Data collected through this program are intended to provide information on the prevalence and incidence of infection in selected populations, to provide early warning of the emergence of infection in new populations, to target intervention programs and other resources, and to evaluate the effectiveness of prevention efforts.

SUMMARY ~ 13 use condoms. The number of adolescents who experiment with same- gender sex is not known with any certainty, but same-gender behavior does not appear to be rare. Survey evidence of sexual risk taking by teens is supported by the fact that approximately 1 million teenage girls become pregnant each year and that, in the last year for which data are available, more than 7,000 cases of gonorrhea were reported among 10- to 14-year-olds and more than 180,000 cases were reported among 15- to 19-year-olds. The high incidence of sexually transmitted diseases (STDs) among sexually active adolescents is worrisome, not only because it affirms that substantial risk taking is occurring within this population but also because there is growing evidence that genital lesions increase the likelihood of HIV transmission during sexual contact. Drug Use. Overall, rates of drug use among teens have declined since their peak in 1979, although the proportion of adolescents who use drugs remains considerable. The precise number of adolescents and young adults who inject drugs is not known; however, most persons who inject illicit drugs first do so either in late adolescence or early adulthood. Local surveys find considerable variation in the proportion of respondents who report needle use; rates approach 1 in 10 in some segments of the teen population. Many more teens report alcohol use, and an unknown number are using crack. Drug-related behaviors that put people at risk for HIV infection now go beyond injecting. Thus, risk assessment must also take into account sexual behavior associated with drugs such as alcohol or crack. High-risk Youth. Environmental factors appear to affect the risk level of teens. Youth interviewed in detention centers and teenagers who live on the streets report high rates of drug use and sexual risk taking. Such youth are at greater risk for virtually all medical disorders of childhood than are children who live in more favorable conditions, and the scant epidemiological evidence that is available indicates that they also experience higher levels of HIV infection. AIDS Prevention Programs for Teens There is a consensus both within the committee and in the nation as a whole that drug use is, in itself, physiologically destructive and psycho- logically debilitating. Thus, AIDS prevention programs for teenagers and adults properly discourage drug use among all persons. From a public health perspective, for persons who do use drugs, AIDS prevention pro- grams have the goals of (1) discontinuance of drug use, if possible; and

14 ~ AIDS: THE SECOND DECADE (2) if discontinuance is not possible, encouragement of precautions to reduce the risk of HIV transmission (e.g., the use of sterile neediest. With regard to premarital and same-gender sexual behaviors, there is no similar consensus. Rather, ample evidence suggests that such be- haviors are an extremely controversial subject in contemporary Amenca. Given the disjunctures in public opinion on this topic, federal AIDS ed- ucation efforts have stumbled for several years over disputes about the need to offer "realistic" advice to young people about the protective value of condoms versus counterclaims that the AIDS epidemic requires moral education to promote abstinence from sex prior to marriage and sexual fidelity within marnage. The committee believes that, in the context of a deadly, sexually transmitted epidemic, AIDS prevention programs must heed the data on risk-associated behavior reported by the adolescents themselves and not be sidetracked by wishful thinking about patterns of behavior some might hope teenagers would follow. All intervention programs should provide information, motivation, skills, and practical assistance to help these young people avoid future nsks. The ultimate goal of AIDS prevention is to prevent HIV transmission, and programs should accommodate the range of challenges young people will face and the variety of choices they may make. Abstinence, delay of intercourse until mamage, and other traditional behavioral patterns are effective ways of eliminating the risk of sexual transmission of HIV. Some teens, however, will choose to begin sexual behaviors during adolescence, as noted earlier. Given the evidence of early sexual activity among some groups of teens, the committee believes that all teenagers should be educated about the protective value of condoms and spe`~icides. In addition, the committee recommends that AIDS prevention programs make special efforts to reach very young teens and, in some subpopulations, to reach youth before they enter aclolescence. AIDS prevention programs for teens should also ensure that youth who engage in male-male sexual contacts have sufficient knowledge and skills to protect themselves in such encounters. Furthermore, all teens should be educated about the dangers posed by the use of illicit drugs. The relatively small group of adolescents who engage in multiple high-risk behaviors, some of whom may already be infected with HIV, present the greatest challenges to AIDS prevention. Intervention pro- grams for these teens should make every effort to assist them in changing the behaviors that place them at risk and should also seek to alter any so- cial or economic conditions that support their risk taking. Teens who are

SUMMARY ~ 15 using illicit drugs, especially those who inject drugs, should be encour- aged to seek treatment. Such a policy in turn requires effective referral networks to treatment programs that are tailored to adolescent needs. Those who continue to use needles should be informed of the hazards associated with this practice, educated about protective measures, and urged not to share needles or other injection equipment. Adolescents who are living on the streets, engaging in prostitution, or exchanging sex for crack will require additional services, such as shelter, counseling, and medical care. Adolescents who are already infected with HIV will require a range of services as well. The resources required to provide these services are likely to be extensive, but their precise nature and quantity have not yet been determined. Reaching Adolescents Surveys of knowledge and attitudes indicate that many of the basic facts about AIDS appear to be reaching the nation's youth. Nevertheless, misconceptions persist, and the segments of the adolescent population that are epidemiologically most vulnerable appear to be less informed than the majority about the disease. Small surveys of minority youth, for example, find that they are less aware than white youth of the behaviors that risk HIV transmission. The committee believes that a particularly crucial message for ado- lescents in the 1990s pertains to their own vulnerability. Some adoles- cents, as well as some adults, still view AIDS as a disease of gay, white adult males. This belief is especially widespread in areas in which the prevalence of AIDS is currently low. It is crucial that adolescents (es- pecially those engaging in high-risk activities) recognize the extent of the epidemic and the possibility that it might affect them. In addition to information, however, adolescents may also require new skills to be able to apply what they have learned in real, day-to-day situations. Broaching difficult topics in conversations, resisting peer pressure to have unpro- tected sex or use drugs, and negotiating less-risky activities may be more difficult than learning the facts about HIV transmission routes. Families and other adult social institutions have a major responsibil- ity for educating adolescents about health risks. Yet the available evidence indicates that parent-child communication about sexual behavior is often insufficient and it frequently does not occur until after initiation of sexual activity. Such findings indicate a need for interventions to motivate and assist parents in the difficult and important task of educating their chil- dren about the dangers of HIV transmission. These findings also suggest

16 ~ AIDS: THE SECOND DECADE that it would be a mistake to rely exclusively on parents as the source of AIDS education for teenagers. The committee believes that AIDS prevention efforts targeting ado- lescents should involve teenagers themselves in the design and execution of these programs. Not only does this policy allow the program to benefit from the counsel of members of the targeted audience, but it empowers adolescents by including them in the processes that will affect their own lives. For many adolescents, inclusion in such activities will provide another stimulus for thinking about AIDS and planning for their futures. There are many venues in which AIDS prevention programs for adolescents can be delivered. CDC has developed and funded prevention programs in schools and other organizations that serve youth, and it has recommended guidelines for AIDS education to help school personnel set the scope and content of their programs. As of May 1989, however, only half of the states required that students receive HIV/AIDS educa- tion. Of the AIDS education programs that have been implemented, few have undergone evaluation, making it difficult to draw conclusions about program adequacy or effectiveness. The committee, however, applauds CDC's plans to conduct systematic evaluations of its activities. Although venues such as schools include most youth, they miss some of the teens who are at highest risk (e.g., youth who drop out of school, runaways). Other approaches that use the media or other outreach strategies for special populations can provide access to these groups. In addition, community-based organizations have some unique and important characteristics that make them promising vehicles for reaching this important segment of the adolescent population. There are in addition a broad range of services that may be helpful to youth who participate in high-risk behaviors. Such services include family planning clinics, drug use and prevention programs, teenage preg- nancy programs, STD clinics, and comprehensive service programs Hat target a variety of social, psychological, and physical problems of adoles- cents. Current demands on these programs for non-HIV-related services are considerable; the feasibility of adding responsibility for HIV-related prevention strategies, counseling, testing, and follow-up services for at- risk teens, their partners, and families is not known. It is not unreasonable to speculate, however, that substantial personnel, financial, logistical, and administrative resources will be required to provide the necessary ser- vices.

SUMMARY I 17 Doing Better with Adolescents in the Second Decade It is not yet clear how best to educate the nation's youth about the be- havioral changes required to retard the spread of HIV. The committee believes that much is to be gained from the systematic study of planned variations of intervention strategies, and it regrets the persisting lack of understanding regarding the types of behavioral interventions that will be most effective in containing the spread of this disease. The committee believes that the Public Health Service would realize substantial returns in practical and scientific knowledge from careful investments in research to determine the effects of planned variations of those behavioral inter- ventions to be implemented in the future. This strategy offers hope that should the epidemic extend into the third decade, our understanding of how to curb the spread of HIV infection will be far greater than it is today. The committee also wishes to reiterate that the diversity of the adolescent population requires a multiplicity of venues and formats to deliver AIDS prevention messages effectively. For some adolescents, intervention may be most effective if it is provided by AIDS prevention programs in the school systems at an early age—before students initiate the behaviors that can threaten their futures. However, to reach many of the adolescents at highest risk for HIV infection requires going beyond the schools. Most important, the committee notes that a small segment of the teen population is at relatively high risk for HTV infection. This segment includes runaway and"throwaway" children, teenage prostitutes, and homeless youth. The committee believes that AIDS prevention programs should focus attention on these youth in a manner commensurate with the elevated risks they face. PROSTITUTES In the beginning stages of the AIDS epidemic, many people feared that female prostitutes would become widely infected and spread the AIDS virus to their clients. At present, this fear appears to be unfounded, at least in the United States. Rather, the evidence suggests that the risk of transmission for this population is more closely associated with drug use than with multiple sexual clients and that the threat posed to and by prostitutes through sexual contact is greater in personal relationships than in paying ones. For these reasons, intervention efforts for this group need to focus not only on risky sexual behaviors but also on drug-related . . transmission. AIDS prevention efforts for female prostitutes and their clients are hobbled by the current sparseness of studies related to these populations.

18 ~ AIDS: THE SECOND DECADE There are few data on prostitutes' clients; the limited data on prostitutes themselves come from ethnographic research and convenience samples, neither of which are representative of the diversity of the population. Lack of representativeness notwithstanding, CDC's recent multicenter study of 1,396 female prostitutes provides much valuable information. The study draws on nonprobability samples recruited from eight sites, including brothels, detention centers, methadone clinics, STD clinics, and networks of"streetwalkers" and "call girls." The total sample reflects some of the heterogeneity of the female prostitute population, which in- cludes a spectrum of sex worker lifestyles: street and bar prostitution, brothel work, massage parlor business, outcall services, and crack-house prostitution. Each has a unique pattern of operation and of experiences with the criminal justice system, with most enforcement activity directed against street prostitution. This variety of independent, pimp controlled, and organized prostitution, as well as the exchange of sex for drugs or other commodities (which may not be conceptualized or acknowledged as prostitution), suggest that different avenues of access will be needed, and different barriers must be overcome, to implement appropriate inter- ventions. On the one hand, independent sex workers are often clandestine and isolated, making them hard to reach. On He other hand, pimps and agents of organized sites (brothel madams, massage parlor and escort agency owners) often constitute additional hurdles to the dissemination of AIDS prevention information and training. Risk Factors Data from the CDC study indicate that rates of HIV infection among female prostitutes vary greatly from site to site (ranging from zero to 47.5 percent) and reflect two important factors. First, rates of HIV infection are much higher among sex workers who report a history of IV drug use than among those who show no evidence of drugs (surveys of female prostitutes from southern Nevada, AtIanta, Colorado Springs, Los Angeles, San Francisco, Miami, and northern and southern New Jersey found that, on average, 19.9 percent of women who reported injecting drugs were infected, compared with 4.8 percent of women who did not inject drugs). Second, among women who do not report IV drug use, HIV infection is associated with a large number of personal (i.e., nonpaying) sexual partners. The distribution of IV drug use among female prostitutes is not clearly understood, but it appears to be skewed toward streetwalkers and ethnic minority sex workers. Given the evidence that HIV infection among prostitutes has occurred mainly among those who use IV drugs and that prostitutes thus appear to

SUMMARY I 19 be at increased risk for HIV infection primarily through drug use rather than through sexual practices, the committee recommends that the National Institute on Drug Abuse and the Centers for Disease Control continue to support and strengthen current efforts to understand and intervene in the relationship between drug use and prostitution. An additional yet related problem has recently emerged that of exchanging sex for crack (a noninfected drug) and the committee believes that this new phenomenon also warrants special attention. The other major risk factor for female prostitutes is multiple non- paying sexual partners. The available evidence indicates that prostitutes engage in unprotected intercourse more frequently with nonpaying part- ners than with their clients. For example, the CDC multicenter study found that only 16 percent of female prostitutes used condoms with non- paying partners (e.g., husbands, boyfriends), compared with 78 percent who used condoms at least occasionally with clients. Other evidence has shown that women who exchange sex for crack also do not use condoms. Yet even with clients, some prostitutes report only sporadic use of condoms, perhaps because of the client unwillingness to take protective action and the pressure this reluctance exerts on women whose liveli- hood depends on fulfilling clients' demands. The distribution of sexual practices—including unprotected vaginal, oral, and anal sex—offered by women and requested by their partners has implications not only for the transmission of the virus but also for the types of educational interven- tions needed to reduce that transmission. Thus far, the number of cases of AIDS ascnbed to contact with female sex workers has been small, and the available data, although limited, suggest that there is little danger that fe- male prostitutes will be a "bridge" of infection to the general population. Indeed, as noted earlier, it appears that female prostitutes ale more at risk of acquiring HIV than they are of transmitting it. Therefore, given the factors that are known to distinguish the risk profile of many prostitutes (multiple unprotected sexual contacts and IV drug use), the committee recommends that the Centers for Disease Control continue to monitor the effects of the AIDS epidemic on this population. Activities should include a continuing, systematic effort to track the incidence and prevalence of both HIV infection and sexually transmitted diseases in this group. There have been very few studies of prostitutes' clients, and although the committee recognizes the difficulties involved in doing research on sex workers' customers, it believes better data should be collected. Relying on information provided by prostitutes about their clients will not suffice, nor can studies rely on interviews with men who are already infected or

20 ~ AIDS: THE SECOND DECADE who have AIDS to ascertain the prevalence of prostitute patronage in the larger population of men. Because so little is known about the role of prostitutes' clients in the spread of HIV infection, and because the future dynamics of the HIV epidemic are unclear, the committee recommends that the Public Health Service undertake a series of feasibility studies to determine the best ways to gather appropriate information about prostitutes' clients and their role in the spread of HIV to the larger population. Interventions Various types of AIDS prevention programs for female prostitutes have been implemented, including street outreach to teach safer drug use and safer sex techniques, similar types of outreach and workshops for organized sites, and voluntary HIV testing and counseling. Many of the outreach programs involve peer-led interventions delivered by ex- prostitutes or current sex workers to facilitate the location and recruitment of prostitutes into the programs and to improve communication between the research community and the targeted population. To a small extent, interventions have also been directed toward eliminating prostitution. As in all areas of AIDS prevention programs, there are often ob- stacles to the delivery of services for female prostitutes. For example, there are too few drug treatment centers to treat prostitutes who are IV drug users; the centers, on the other hand, frequently report problems retaining individuals in treatment. In some locales, the criminal justice system has worker! against the adoption of safer sex technologies by allowing the possession of condoms to be used as probative evidence of intent to solicit prostitution. Along the same lines, client demand for unprotected sex works against instituting condom use among prostitutes. The criminalization of prostitution acts as a further battier to partici- pant recruitment in intervention programs and thus to the implementation of AIDS prevention. Getting around these obstacles to the delivery of services to both prostitutes and their clients will require additional efforts. In summary, researchers must consider a number of variables in pros- titutes' lifestyles and risk patterns in designing appropriate interventions and overcoming bamers to Heir implementation. It should be reempha- sized Hat these factors and the epidemiology of HIV among prostitutes are not well understood, in part because little research is available on this heterogeneous group. Given their current risk levels and the preva~- ing uncertainty regarding the future spread of the epidemic, female sex workers warrant continuing prevention efforts and focused research on patterns and prevalence of infection.

SUMMARY ~ 21 PROTECTING THE BLOOD SUPPLY Infectious diseases have always been a major concern of those responsible for protecting the blood supply. Since the advent of the AIDS epidemic, however, the transmission of infections through contaminated blood and blood products has taken on paramount significance; measures to deal with these concerns in turn have raised additional problems related to the adequacy of the blood supply. In 1985, blood collection organizations began using a new serologic test to screen blood donations for antibody to the AIDS virus. Although this technological innovation dramatically reduced the incidence of transfusion-related infection, it was not (nor is it yet) capable of detecting all contaminated donations. For example, recently infected individuals who have not begun to produce antibodies to the AIDS virus cannot be identified by this test. Therefore, additional screening mechanisms were instituted. Donors who had engaged in risk- associated behaviors were asked to refrain from donating (self-deferral), and specific procedures were established to help donors assess their level of risk. Today, as donor eligibility requirements become even more stringent (reflecting new information about risk behaviors) and deferrals increase, the question of how to maintain an adequate supply of blood has inevitably arisen. The demand for blood in this country is substantial but not without some flexibility. Consequently, there has been renewed examination of appropriate uses of blood and blood components and of the mechanisms needed to support and encourage such uses. Exclusionary Procedures Over the past few years, a number of mechanisms have been developed to screen (and subsequently defer) at-risk donors to protect the safety of blood and blood products. Individuals are deferred from donation, either temporarily or permanently, for a number of reasons, including fever, anemia, a history of exposure to malaria, recent infection, signs or symp- toms of HIV infection, or a history of risk-associated behavior. At the beginning of the donation process, each prospective donor is given infor- mation about donation and about infections that may be transmitted by blood, especially HIV. Individuals with signs of HIV infection or AIDS or a history of behaviors known to transmit HIV are asked not to donate and are informed that they may leave the donation site without providing an explanation to staff or others that might compromise the confidential nature of this information. Individuals who choose to continue with the donation process then provide a confidential health history that includes questions about AIDS-related symptoms and behaviors. Deferral may also occur at this point. Finally, following the health history, all donors

22 ~ AIDS: THE SECOND DECADE are offered yet another opportunity to exclude their blood from the trans- fusion pool. Because some people fee] pressured by peers or coworkers to donate blood, blood collection organizations have instituted the con- fidential unit exclusion, or CUE, procedure to lessen the chance that an infected individual will give blood. CUE uses a form that allows the donor to select one of two options for handling the donated unit of blood: (1) the blood may be used for transfusion, or (2) the blood should not be transfused. CUE is an important mechanism that allows these individuals to participate without the stigma of deferral for sensitive reasons and at the same time protect the safety of the blood supply. Maintaining an Adequate Supply of Blood Estimates of the size of the nation's potential donor population suggest that more than half the men and women in the United States are eligible to give blood. Yet less than 10 percent of men surveyed by CDC and less than 5 percent of women reported giving blood last year. Most blood is given by repeat donors, who are disproportionately white males; women, members of minorities, blue-collar workers, the very young, and older people are underrepresented in samples of blood donors. Current recruit- ment efforts seek to tap some of these underrepresented sources of donors to augment the blood supply, but it is likely that additional attention and research will be needed to encourage participation by individuals from these groups and, in some cases, to identify subgroups that are the least likely to report risk-associated behaviors. The question of why some people give blood and others refuse to give is important to the development of effective strategies to recruit and retain donors. Many donors report altruistic reasons for donating. Some give in response to social pressure or to fill a perceived need In the community; others participate to receive special benefits that may accrue to donors, such as blood typing or cholesterol testing (where available). The effects on donor recruitment of offering material rewards (e.g., raffle prizes, reduced-price merchandise) are not clear. Indeed, the precise factors that motivate blood donors are poorly understood. Donation may be inhibited by a number of other elements, some of which include medical ineligibility, fear, adverse physical reactions to the act of donation, and inconvenience. The extent to which any of these factors discourages people from donating (that is, in those cases in which they have not been deferred for medical reasons) may be lessened by a blood collection process that considers the needs of both first-time and repeat donors. The ideal experience is one involving personal attention, professional treatment, and a clear exchange of information in a setting

SUMMARY ~ 23 that expresses concern for the donor's welfare and privacy. Realistically, however, the needs of donors must be reconciled with those of blood collection organizations, which must carefully balance efficiency (and economy) with the need to inform donors adequately about HIV infection arid the importance of deferral for those who may be at risk. To increase the blood supply, the committee recommends that: · blood collection organizations prepare and deliver (in cooperation with the mass media) clear and accurate information concerning both the need for donation and the absence of health risks from donation; · the National Heart, Lung, and Blood Institute support research on the design, systematic testing, and imple- mentation of new methods for attracting healthy first- time donors, retaining and encouraging repeat dona- tions, and enlisting the aid of repeat donors in donor recruitment; · blood collection organizations undertake to make the actual donation process as comfortable, friendly, and ef- ficient as possible through changes in scheduling proce- dures, physical accommodations, donor processing, and staff training; o blood collection agencies, Public Health Service agen- cies, and community leaders employ innovative recruit- ment approaches among populations such as minority and certain age groups that traditionally have not been represented in the donor pool; and · physicians and blood banks encourage autologous do- nation (i.e., predeposit of an individual's own blood) in cases in which surgery is anticipated (see later section on the appropriate use of blood). Improving the Safety of the Blood Supply Main~n~ng the safety of the blood supply depends on the use of tests to detect antibody to HIV in the donations of individuals who do not report engaging in behaviors that transmit the virus (i.e., individuals at indirect nsk) and on the exclusion of individuals who are at even minimal nsk. Although HIV antibody tests are sensitive enough to detect most infected donations, biomedical scientists are continuing research to improve test capacities while social and behavioral scientists continue to work on ways to improve donor recruitment and deferral strategies. To design

24 ~ AIDS: THE SECOND DECADE effective strategies to recruit healthy donors, however, it is necessary to understand the characteristics of donors who have been found to be infected and those whose blood is "safe." Surveys of HIV infection among blood donors find more infection among men than women, more infection among younger donors than older ones, and more infection among minorities than among whites. In addition, comparisons of the pattern of HIV prevalence among blood donors with that of specific risk groups show that women and bisexual men are overrepresented among infected blood donors; a substantial proportion of infected donors, moreover, report no identifiable risk factor. It is important to remember, however, that it is participation in high- risk behaviors and not membership in any particular group that confers a risk for HIV infection. Therefore, as with all recruitment efforts, blood donation drives directed toward minorities and other groups that bear disproportionate burdens of HIV-related illness should seek those individuals whose behavior predicts a low risk of HIV infection. The low prevalence of AIDS and HIV (and the presumably low prevalence of high- risk behavior) among the elderly and the late middle-aged segments of the population makes them an obvious focus for blood drives. Traditional concerns that older people will not be able to meet donor eligibility requirements seem outmoded today, considering the health and vigor displayed by many who are past retirement age. In the past, women were considered to be at relatively low risk for HIV infection. Now, however, as the epidemic enters its second decade, the risk profile of women appears to be changing. In addition, current exclusionary mechanisms may not be sufficient to screen out all infected women. Many women are unaware of their level of risk because exposure to the virus is indirect (e.g., from an infected sexual partner as opposed to them own IV drug use). For such women, voluntary self-deferral is not possible. The ability to assess the risk posed by individuals who may have been exposed indirectly to HIV infection presents enormous challenges to the current system. Yet, considering the potential importance of women to the donor pool, it seems reasonable to pursue solutions to this problem, as well as to support research that would shed light on why women are underrepresented among blood donors and the factors that might increase . . . . t year participation. One strategy to increase participation of safe donors involves the use of members of a targeted group as role models for prospective donors and as staff for donor recruitment and blood collection. Seeing known or similar people involved in the process seems to increase the perception among potential donors that blood donation is something individuals in

SUMMARY | 25 their community do. Ultimately, such a perception may lead to increased donation from currently underrepresented groups. Yet for a strategy to increase donor participation, it must also encompass mechanisms to enhance appropriate deferral, in past because of recent concerns regarding the effectiveness of self-exclusion procedures. It has become apparent that some donors simply do not understand the materials intended to inform them about exclusionary criteria. Others do not perceive their own nsk; a lack of perceived risk has been shown even among infected donors. FinaJ1y, a worrisome subset of donors uses blood collection organizations to secure HIV testing. These problems have obvious implications for self-deferral strategies. Providing comprehensible information is a reasonable starting point for improving the self-deferral process. Research is needed to ascertain the relative effectiveness of different forms of communication. Focusing on risk behaviors rather than membership in a risk group and including in the health history direct questions concerning intimate but risky personal behaviors are promising strategies to ameliorate the blood safety problems associated with a lack of risk perception. Attention must also be given, however, to issues of donor privacy and to staff training in the conduct of health history interviews. In addition, because there will probably continue to be some at-nsk individuals who donate blood as a way of being tested, efforts must be made to reach these donors and refer them to alternative testing sites. To improve the safety of the blood supply, the committee recom- mends that: · blood collection agencies strive for clearer communi- cation of the exclusion criteria to potential and actual donors; · blood collection agencies work to increase donation by those who can safely give and abstention by those who are at even minimal risk through recruitment approaches that stress altruistic appeals rather than the use of com- petitions, incentives, and social pressure; and · the National Heart, Lung, and Blood Institute con- tinue its support for research to investigate why some donors with identifiable risk factors continue to donate while others without risk factors inappropriately exclude themselves.

26 ~ AIDS: THE SECOND DECADE The Appropriate Use of Blood On recent years, blood centers have seen a shift from the practice of transfusing whole blood to the use of only the specific blood component needed. This trend reflects sound medical practice and has the added benefit that a single donation can be used to treat as many as four different patients, thus relieving some of the strain on the blood supply. A drawback of this practice, however, is that two to four patients may be exposed to blood components from one contaminated donation. There is some evidence that blood utilization in the United States has been affected by concern over the risk of HIV transmission. For example, total red blood cell transfusion rates remained constant between 1982 and 1985, after a period of increasing rates; the use of plasma stabilized in a similar manner. Total platelet transfusion rates, however, continued to increase. Thus, the use of blood and blood components continues to require monitoring, and strategies should be explored to ensure the appropriate use of transfused blood. Under certain conditions, individuals can predeposit their own blood for transfusion during elective surgery, a practice known as autologous donation. Before 1985, autologous transfusions were rarely used, and many blood centers in the United States did not have procedures for handling predeposited blood. From the perspective of the HIV epidemic, the infrequent use of autologous transfusion is regrettable. Even today the practice is underutilized. Because transfusion with autologous blood is the safest form of transfusion, the data indicating its infrequent use warrant further consideration and, if necessary, interventions to reverse . . . this situation. In the absence of autologous donation, another strategy is to reduce the exposure of transfusion recipients to homologous blood (i.e., blood from a community's general donor pool). This can be accomplished in several ways. In principle, these approaches involve more appropriate use of blood by decreasing the nonessential use of blood and blood components, reducing the need for transfusion, and inactivating HIV and other viruses that may be present in blood products. Another strategy for reducing exposure to homologous blood is to shorten the patient's bleeding time and enhance his or her own red blood cell production. Promising approaches include the use of desmopressin acetate, which has been shown to reduce blood loss in patients undergoing complex cardiac surgery, and the hormone erythropoietin, which can substantially increase red blood cell production. To implement any of these strategies, programs will be needed to educate physicians and their patients and to modify relevant behaviors.

SUMMARY ~ 27 Audits of blood use and educational programs that go beyond dissemina- tion of pamphlets and the traditional didactic method appear to hold the most promise; however, more data are needed to specify the character- istics of programs that are likely to be effective in modifying prescrib- ing patterns of physicians. The committee recommends that agencies of the Public Health Service sponsor the development, systematic testing, and implementation of transfusion-related intervention and education programs to facilitate change in physicians' attitudes and behaviors with regard to: · encouraging healthy patients to donate blood; · encouraging autologous donation where medically ap- propriate; · eliminating the unnecessary use of blood and blood com- ponents; and · employing appropriate procedures (e.g., perioperative blood salvage, use of erythropoietin) that reduce the need for transfusion. Standards or criteria regarding the appropriate use of blood and blood components are currently lacking, making it difficult to determine with certainty whether transfusions are being given appropriately. As a result, the committee recommends that the Public Health Service sponsor research to monitor trends in transfusion practices nationally to per- mit evaluation of the appropriateness of blood and blood component utilization and to identify targets for change. It further recommends that the PHS develop and evaluate effective strategies for informing patients about the risks and benefits of transfusion. SURVEY METHODS IN AIDS RESEARCH Surveys or, more generally, the method of asking questions and record- ing answers from a sample of a population of interest continue to be one of the most important techniques for obtaining essential information about the epidemiology of AIDS and HIV, the behaviors that spread HIV, and the effectiveness of AIDS prevention efforts. Given the important role that this information plays in understanding the AIDS epidemic, the committee has reviewed what is known about the quality of exist- ing data on behaviors associated with HIV transmission and provides recommendations on steps that can be taken to improve this information. Sampling Much of what is now known about the epidemiology of AIDS comes

28 ~ AIDS: THE SECOND DECADE from small-scale, local studies targeted at subgroups thought to be at high risk of infection. Participants in these studies are recruited from a variety of sources from the clientele of local clinics or treatment facilities, from the membership rosters of local organizations, from newspaper advertise- ments and physician referrals, and occasionally from "street sampling." The yield from this research has been remarkably rich. As valuable as these studies are, however, the data they provide cannot address many important public health questions that arise from the problem of AIDS, such as how large is the epidemic and what is the potential for general spread of HIV infection? To answer questions such as these, lessons learned from local studies of special subgroups must be applied in large-scale investigations of pop- ulations that are chosen not because of convenience or ease of access but because of their importance in understanding the course of the epidemic. To review the adequacy of current survey work in the general population and in local areas, the committee reviewed 15 selected surveys. Most of these studies were initiated after the AIDS epidemic began and rep- resent responses to the need for population-based estimates of behaviors known to be associated with HIV transmission. The committee assessed the execution of each survey's sampling plan and, in particular, the rat of participation (i.e., the response rate). The committee also considered the available evidence on nonresponse bias; that is, the disproportionate underrepresentation of identifiable segments of the population, especially those who differed on the characteristics being measured. Response rates are used as a "yardstick" for assessing the accuracy of survey estimates because high response rates reduce the influence of selective participation in surveys and hence the potential for bias in the estimates. There was substantial variation in the response rates achieved in the surveys examined by the committee. No strong associations were observed, however, between response rates and modes of data collec- tion (i e., personal interviews, telephone interviews, or self-administered questionnaires given in the context of a personal interview). There were also no substantial associations between response rates and the scope of the sampling (local versus national), the number of questions on sexual behavior in the interview, or, surprisingly, whether sample persons were asked to donate blood specimens for serologic testing. From the review conducted by the committee, it appeared that "pig- gybacking" a small number of questions about sexual behavior onto estab- lished large-scale surveys is a particularly feasible strategy for obtaining estimates of the prevalence of certain sk factors for sexual transmission Of HIV in general populations. Relatively high rates of participation have

SUMMARY | 29 been achieved by several established surveys. The ingredients for such success are well known to survey practitioners: prior experience with similar surveys, continuity of interviewing staff, a high "target response rate" combined with a field operation that promotes diligent follow-up of nonrespondents, and adequate resources. Under these conditions, it is possible to achieve response rates for small subsets of sex-related items that are similar to the rates achieved by well-conducted surveys that do not inquire about sensitive personal behaviors. The collection of survey data through telephone interviews has be- come an increasingly popular alternative to face-to-face interviewing (telephone interviews are less expensive and easier to conduct as a result of developments in sampling and interviewing technology). Experience with surveys of sexual behavior conducted by phone is too limited, how- ever, to determine the levels of participation that can be achieved in such surveys and whether the somewhat lower response rates in the few available cases are a generic feature of telephone surveys or simply the result of early and somewhat idiosyncratic first attempts. In view of the substantially lower cost of telephone as compared with face-to-face surveys, as well as the limited scope of current experience, carefully designed experiments should be undertaken to test the feasibility of this methodology for surveys of sexual behavior in general populations. SeroprevaTence surveys involve the application of well-established principles of probability sampling and survey methodology to the problem of collecting sample blood specimens in such a way that population prevalence can, in theory, be estimated with known margins of error. However, the practical difficulties involved in mounting a seroprevaTence survey on a local or national basis are formidable. Not the least of these are the problems of potentially high levels of noncooperation among sample persons and possible correlations between participation and HIV serostatus. A trade-off between streamlined designs that maximize response rates and intensive epidemiological investigations with lower response rates is apparent in the available examples of such surveys. Survey designs that limit the demands on respondents by making participation relatively easy, anonymous, and nonthreatening—may be a wise choice. Further testing and refinement of this approach on a larger scale will establish whether it constitutes a feasible design for a national survey. Nonresponse Bias Nonresponse bias occurs when participation in a survey is selective with respect to a characteristic whose distribution is to be estimated from the survey responses. A high response rate tends to minimize the effects of

30 ~ AIDS: THE SECOND DECADE such selectivity on survey estimates as Tong as the procedures used to attain it do not in fact increase the correlation between the characteristic of interest and the act of participation. Response rates in most surveys, however, usually are not sufficiently high to justify ignoring problems of . . . . se ect~ve participation. What is presently known about the structure of nonresponse bias in sex and seroprevalence surveys comes from two kinds of compansons: comparisons of survey estimates with census data and internal analyses of the correlates of different levels of nonresponse. There is an appar- ent positive correlation between years of schooling and participation in several of the surveys, but the committee could detect few other regular- ities in the available analyses of deviations between survey estimates and census figures. In any case, a good match between census and sample survey distributions, although encouraging in some respects, does not imply unbiased estimates of prevalence rates for sexual behavior or HIV infection. In many surveys, it is possible to study nonresponse at a given stage of the survey by looking at information collected at a previous stage- for example, by comparing responses given by respondents and nonrespon- dents in the preliminary interview or comparing the characteristics of persons who agreed to give a blood specimen with those who refused. In reviewing selected surveys, the committee found many opportunities for such comparisons, few of which had been seized. The addition of a careful study of nonresponse bias to the short sexual behavior component of the 1988 National Opinion Research Center's General Social Survey (GSS) is an important exception. In the GSS, nonresponse biases were found to be quite small among those variables most closely associated with differences in sexual behavior. Although these results are infor- mative about the nature of nonresponse in this one survey, it would be premature to generalize them to other surveys. Rather, careful studies are required of the effects of nonresponse in a wider range of sexual behav- ior and seroprevalence surveys. In this regard, the committee encourages further exploitation of existing data from past sex and seroprevalence surveys to learn more about the structure of nonresponse. Validity and Reliability Behind every e-way tabulation, logistic regression, or other analytical model used in AIDS behavioral research lies a human encounter between two individuals, an interviewer and a respondent. The situational, cogni- tive, social, and psychological factors that arise within that interpersonal exchange affect the answers that are given and the data that are thereby

SUMMARY ~ 31 generated. To understand the sexual and drug-using behaviors that are at issue in survey research on HIV transmission, one must ultimately con- front the uncertainties introduced by this question-and-answer process. Although there is a substantial literature on the effects of nonsam- pling factors in survey measurements, the problems encountered in study- ing sexual and drug use behavior are unique in some respects- most no- tably, with respect to validation of responses. There is reason to believe (and empirical evidence to support such a belief) that some respondents conceal behaviors under even the most benign of survey circumstances. This possibility must be given considerable weight in the face of statutes in many states that classify some sexual behaviors (including male-female and male-male oral and anal sex) as crimes. Finally, there is the possibil- ity that behaviors engaged in while the respondent is under the influence of drugs or alcohol may be poorly recalled, if at all. Given these con- siderations, lingering concern about the trustworthiness of key survey estimates is virtually inevitable. In light of such concern, the committee reviewed the available evidence on the accuracy of self-reports of sexual and drug use behaviors. Sexual Behavior There is only a very limited range of evidence that can be collected to provide independent corroboration of the validity of self-reported sexual behaviors. One type of evidence is the reports of sexual partners. Studies by Kinsey and several later investigators find a rather high degree of congruence between reports of sexual partners. Indeed, in some of the instances, the levels of agreement are striking. Although partners provide the most obvious source of independent information on sexual behavior, they are not the only validation method that has been used. One investigator, for example, went to unusual lengths (including the use of a lie detector) to motivate respondents to correct"misreports" they made in completing a survey questionnaire. The "corrections" made to the original survey data provide an indication of the types of reporting biases that afflict typical survey measures. For every sexual behavior included in this study, a substantial fraction of the respondents (college men) misreported their actual behaviors. Thus, although virtually every male ultimately indicated that he had masturbated, approximately one out of every three In the initial survey denied masturbating. Similarly, although 22 percent of these college men ultimately reported some history of male-male sexual contact, the majority of these men initially denied such contact. In two instances, analyses have been reported of measurements of

32 | AIDS: THE SECOND DECADE sexual behavior derived from independent replications of surveys on sam- ples of the same population. Although some deviations could be detected statistically between the measurements made in different surveys, the dis- crepancies found were actually quite small. Although only two behaviors were compared (age at- first occurrence of heterosexual intercourse and number of partners in past year), these examples demonstrate that sur- veys can produce replicable measures of sexual behavior in well-defined populations. A parallel approach to the replication of entire surveys on new sam- ples from a population is the repeated measurement of a stable character- istic of the same respondent. Results of such studies indicate substantial levels of consistency between answers to questions about sexual behav- ior obtained at two different points in time. The observed consistency, however, is not as high as the consistency obtained for some other topics, such as smoking behaviors. Drug-Using Behaviors The methodological difficulties encountered in studying drug use be- haviors are similar to those found in studying sexual behaviors. As in measuring sexual behaviors, a major problem in measuring injection behaviors arises from the fact that researchers usually cannot directly ob- serve the behaviors of interest and thus must rely on self-reports. Several studies have compared reports of drug use with the results of urinalysis. Evidence from these studies suggests that there are moderate levels of underreporting of drug use. Generalizations from such studies are con- strained by the fact that past research has usually examined a relatively restricted range of behaviors typically focusing on drug use per se in populations that were already identified as ex-drug users. In AIDS re- search, however, questions of particular interest include not just whether drugs are used but how they are administered, how often needles are shared or cleaned, and so forth. Little is known about the accuracy of responses to more fine-grained questions such as these, although some data suggest that respondents share needles at a rate higher than they report to researchers. Summary of Fintlings Although there is ample evidence of error and bias in existing surveys of sexual behavior and such evidence should be of concern to investigators, some important and promising conclusions can nevertheless be drawn from this body of work. First, there appears to be little question that surveys of sexual and

SUMMARY ~ 33 drug use behavior can enlist the cooperation of the vast majority of the American public. Second, the recent literature contains two instances in which inde- pendently conducted surveys of aspects of sexual behavior (age of first intercourse and number of sexual partners in past year) produced reas- suringly similar results. This similarity was achieved despite variations in survey methodology. Third, in most sexual behavior and drug use surveys, it will be difficult (if not impossible) to obtain convincing evidence of measurement validity. The committee finds nonetheless that the research literature contains several important demonstrations of the validity of behavioral measures. These results are certainly encouraging, but there is also a variety of other evidence that suggests that some behaviors may be considerably underreported in surveys. For example, although the data are limited, it appears that male-male sexual contacts may be significantly underreported (at least by college student populations). Finally, there is a fairly large body of research addressing the consis- tency of responses over short periods of time in survey reports on various aspects of sexual behaviors. These studies have generally demonstrated moderate levels of response consistency over time. It must be noted, however, that consistency in itself does not guarantee accuracy. Improving Measurements The above evidence leads naturally to questions regarding how to im- prove the reliability and validity of self-reported data on these behaviors. To begin answering those questions, the committee recommends that the Public Health Service anti other organizations supporting AIDS research provide increased support for methodological research on the measurement of behaviors that transmit HIV. Such research should consider inferential problems introduced by nonresponse and by nonsampling factors, including (but not limited to) the effects of question wording and question context, the time periods and events that respondents are asked to recall, and the effects of anonymity guarantees on survey responses. In addition to adopting procedures that ensure that respondents can understand the questions they are being asked, it is desirable to supplement self-reports with alternative mea- sures whenever possible. Ethnographic observations, physical evidence, skills demonstrations, and reports of "significant others" can provide important data on the biases that may affect key measurements. The committee recommends that, whenever feasible, researchers supple- ment self-reports in behavioral surveys on HIV transmission with

34 ~ AIDS: THE SECOND DECADE other indicators of these behaviors that do not rely on respondent reports. Furthermore, the committee recommends that, where ap- propriate, researchers embed experimental studies within behavioral surveys on HIV transmission to assess the effects of key aspects of the survey measurement process. Although it is impossible to provide firm guarantees as to the ben- eficial effects of any particular tactic, the committee believes that there is strong presumptive evidence to indicate that a considerably larger in- vestment of resources needs to be made in exploratory work prior to the fielding of major survey investigations. For surveys of behaviors that risk HIV transmission, this lack of exploratory research is particularly troubling, given the underdeveloped state of research in this field. In this regard, the committee notes that some of the questionnaires it re- viewed made impossible demands on the memory of respondents, an unfortunate error that would have been detected if the questionnaires had received more thorough pilot testing. The committee recommends that researchers who conduct behavioral surveys on HIV transmission make increased use of ethnographic studies, pretests, pilot studies, cognitive laboratory investigations, and other similar developmental strategies to aid in the design of large-scale surveys. SYNOPSIS AND MAJOR RECOMMENDATIONS Throughout the report the committee reviews a variety of issues and presents a series of recommendations. Because the material is presented in some detail, the committee wishes to highlight some of the major points here. The committee finds that the broadening scope of the AIDS epidemic calls for increased prevention efforts to reach a variety of subpopulations at differential risk, such as adults and adolescents, men and women, ho- mosexuals and heterosexuals. The committee is particularly concerned about the epidemiological evidence that finds a disproportionate burden of disease among minority subpopulations. Therefore, the committee rec- ommencIs that the agencies of the Public Health Service encourage and strengthen behavioral science research aimed at understanding the transmission of HIV in various black and Hispanic subpopula- tions, inclutiing men who have sex with men, drug users anti their sexual partners, and youth. The committee further recommends that the PHS develop plans for appropriate interventions targeted toward these groups and support the implementation of intervention strategies (together with appropriate evaluation components) in both demonstration projects and larger scale efforts.

SUMMARY | 35 Adolescents and women are other groups that present both impor- tant opportunities to prevent future disease and challenges to providing effective intervention programs. It is during the adolescent years (and sometimes earlier) that many of the behaviors that risk transmission of HIV are initiated. For programs to be most effective, however, teens must be reached before they begin the behaviors that put them at risk. Thus, the committee recommends that AIDS prevention programs make special efforts to reach very young teens and, in some subpopula- tions, to reach youth before they enter adolescence. Thus far over the course of the epidemic, a considerable proportion of the resources allo- cated to prevent horizontal and vertical transmission among women have been devoted to counseling and testing programs. Yet important ques- tions remain about how this service is delivered and what impact it has on subsequent risk-associated behaviors. Therefore, the committee recom- mends careful review of the goals of testing and counseling programs for women of childbearing age and the implementation of research to ascertain the effect of such programs on future risk-taking behavior. Moreover, the committee recommends that the Public Health Service support research to develop protective measures other than condoms for preventing HIV transmission during sexual contact specifically, methods that can be used unilaterally by women and methods that will be acceptable to both men and women who do not currently use condoms. Designing and implementing relevant and effective programs re- quires knowledge about the targeted population and the risk-associated behaviors of concern. Thus, the committee recommends: · that the Public Health Service encourage and support behavioral research programs that study the behaviors that transmit HIV infection and that the PHS develop and evaluate mechanisms for facilitating and sustaining change in those behaviors; · that intervention programs incorporate planned varia- tions that can be carefully evaluated to determine their relative effectiveness; · that the PHS regularly summarize the data derived from currently funded behavioral and epidemiological research on AIDS (in terms of incidence of infection and high-risk behaviors) to determine intervention priorities for various subpopulations at risk; and · that all agencies of the PHS that are currently funding intervention programs and evaluation research regularly

36 ~ AIDS: THE SECOND DECADE summarize the data derived from these studies to deter- mine which, if any, programs can be recommended for wider dissemination. Understanding the behaviors that transmit the virus depends on the availability of valid and reliable data regarding those behaviors, including the distnbution and variation of the behaviors across venous subpopula- tions. Unfortunately, the data on AIDS-related behaviors are extremely limited, and most are out of date. Moreover, these data rely for the most part on self-reported information of unknown quality. Consequently, the committee recommends that the Public Health Service and other organizations supporting AIDS research provide increased support for methodological research on the measurement of behaviors that transmit HIV. Such research should consider inferential problems introduced by nonresponse and nonsampling factors, including (but not limited to) the effects of question wording and question context, the time periods and events that respondents are asked to recall, and the effects of anonymity guarantees on survey responses. In addition to the diversity of at-risk groups, the committee wishes to note the dynamic nature of the patterns of behavior that contribute to the spread of infection. The role played by IV drug use in HIV transmission has been apparent since the early years of the epidemic, but only recently has there beer a growing appreciation of the role of over drugs, such as crack and cocaine, in sexual transmission of the AIDS virus. Therefore, the committee recommends that the Public Health Service establish mechanisms across its agencies for rapid identification and assessment of the relationship of new drug use problems to the spread of HIV. Given the continued threat of HIV and AIDS and given the lack of biomedical solutions to this serious health problem, the committee finds that sustaining behavioral change and preventing relapse are issues that require immediate and sustained attention. Thus, the committee recommends that the Alcohol, Drug Abuse, and Mental Health Administration focus research efforts on AIDS-related relapse prevention, including the determinants of such relapse and the role that alcohol and other drugs play in the return to unsafe sexual and injection practices. There has been substantial progress in reducing the risks of HIV transmission associated with the blood supply, progress achieved through technological solutions, augmented by behavioral interventions. Yet, as the risk of exposure to contaminated blood and blood products diminishes, the issue of maintaining an adequate supply of blood arises. Efforts to exclude at-nsk donors must take into account the need to maintain

SUMMARY | 37 sufficient quantities of blood donated by individuals who pose no risk to the blood supply. The committee recommends that: · blood collection agencies strive for clearer communi- cation of the exclusion criteria to potential and actual donors; · blood collection agencies work to increase donation by those who can safely give and abstention by those who are at even minimal risk through recruitment approaches that stress altruistic appeals rather than the use of com- petitions, incentives, and social pressure; · the National Heart, Lung, and Blood Institute con- tinue its support for research to investigate why some donors with identifiable risk factors continue to donate while others without risk factors inappropriately exclude themselves; and physicians and blood banks encourage autologous dona- tion in cases in which surgery is anticipated. Reducing the exposure of potential transfusion recipients to homol- ogous blood can be accomplished in several ways, depending on the circumstances that prompt transfusion. Educating physicians and their patients, establishing guidelines for blood use, and modifying prescribing behavior are necessary to achieve this goal. .

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Expanding on the 1989 National Research Council volume AIDS, Sexual Behavior, and Intravenous Drug Use, this book reports on changing patterns in the distribution of cases and the results of intervention efforts under way. It focuses on two important subpopulations that are becoming more and more at risk: adolescents and women. The committee also reviews strategies to protect blood supplies and to improve the quality of surveys used in AIDS research.

AIDS: The Second Decade updates trends in AIDS cases and HIV infection among the homosexual community, intravenous drug users, women, minorities, and other groups; presents an overview of a wide range of behavioral intervention strategies directed at specific groups; discusses discrimination against people with AIDS and HIV infection; and presents available data on the proportion of teenagers engaging in the behaviors that can transmit the virus and on female prostitutes and HIV infection.

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