JOURNAL OF ADOLESCENT HEALTH 1991;12:614-618

AIDS and Adolescence: A Challenge to Both Treatment and Prevention STEPHEN

C. JOSEPH,

M.D.

Even in New York City, the national epicenter of the human immunodeficiency virus (HIV) epidemic and the city with the most explosive mix of sexually mediated and drug-related transmission, the number of cases of acquired immunodeficiency syndrome (AIDS) diagnosed among adolescents during the first decade of the epidemic is small: fewer than 50 of 30,000 total AIDS cases. The number of diagnosed AIDS cases is, however, a dangerously misleading statistic, for two reasons. First, given the long time lag between infection with HIV and the diagnosis of Center for Disease Control {CDC) categorized AIDS (from 3 to more than 10 years), the number of cases of AIDS that occur before age 20 years or even 24 years will always underrepresent the actual level of infection in a population that adopts risk behavior at a median age of greater than 15 or 16 years. A corollary to this is that date of infection of any individual case of AIDS diagnosed among persons in their late twenties is difftcult to differentiate: is it a “long-onset” case of an infected teen or a “rapid-onset” case in an infected young adult? Second, in an epidemic with such a long lag between infection and symptomatic illness, the counting of AIDS cases yields a S-year-out-of-date proxy for the level of current infection in a given population group. There is only a “single generation time” or “half-life to diagnosis” that represents our entire experience of the epidemic so far (the period 198~~ 1990 is about the same as the median time required -__

Adds wpriut requests to: Stephen Joseph, M.D., Dean, School of Public Health, University of Minnesota, A302 Mayo Ruilding Box 197. 120 D&ware St., Minnmplis, MN 55455. Manuscript accepted Sqitember 2992.

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for an individual to progress from infection to AIDS). These factors ensure that the current actual level of infection in the adolescent group is badly understated by counting the number of AIDS cases among them and any recent upwards trends in infection rates will be even more badly underestimated. Thus, even a small number of diagnosed cases among adolescents is an ominous sign for the future, which indicates a much larger area of the iceberg of infection floating below the clinical surface. This becomes even more ominous when combined with what we know about adolescent risk behavior concerning sex and drugs, and about groups of adolescents at special risk, such as runaway and street youth, incarcerated adolescents, and teenagers addicted to crack. The 1990 New York City Department of Health statistics on HIV infection among adolescents indicate that of 725 cumulative cases of AIDS among persons aged 13 through 24 years, only 46 cases occurred in persons aged 13 through 19 years. Most of the 725 individuals diagnosed in their early twenties were, of course, actually infected in adolescence. Further, another, larger group of AIDS cases diagnosed at ages 25 through 29 years (3,259 cases) certainly includes many individuals who were infected in middle or late adolescence. If we guesstimated conservatively that roughly 500 to 1,000 cases of AIDS diagnosed in New York City since 1981 were actually acquired in adolescence, we could further speculate that approximately 3,000 with HIV-related illness were infected in adolescence ([4 x 461 + [4 x 7001 + 4 x a small proportion of the 3259). We might also hypothesize (given the rough ratio of 1 case of AIDS for every 10 HIV seropositive results) that, at the high end, somewhere between QSociety for Adolescent Medicine, 1991

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December 1991

5,000 and 10,000 of the 1 million adolescents in New York City are currently infected with HIV. Though this prevalence of infection of hetween 0.5% and 1% may seem an outrageously high estimate, it falls within one order of magnitude, in either direction, of what surveys have shown about HIV seroprevalence in samples of New York City adolescents: 6% among homeless adolescents, 4.2% among incarcerated adolescents, 2.2% among adolescents attending STD clinics, 0.9% among adolescents attending (MIC) clinics, 0.9% among pregnant adolescents, and 0.16% amon,g military recruits. In the absence of any better data, we currently estimate in New York City a low-end prevalence of HIV infection among adolescents of O.l%, or some 1,000 teenagers who are infected and infectious to others for the rest of their lives. Keep in mind five critical but undoubtedly accurate statements about the 1,000 or more infected adolescents in New York City: 1. They are not distributed equally across the city but are clustered in certain geographic areas. For adolescents, as for children and adults, AIRS in New York City is increasingly a family, neighborhood, poverty, minority, and substanceabuse-associated disease. Thus, most of those 1,000 youngsters are Black and Hispanic teenagers living in poverty. 2. Not only the infected youngsters but also their currently uninfected friends and lovers are more likely to be engaged in high-risk sex and drug behaviors than other teens in their neighborhoods and citywide. Thus, the epidemic among adolescents will continue to focus its intensity. 3. As the virus is increasingly transmitted heterosexualiy among and from these infected teens, especially in high-prevalence neighborhoods, the standard “markers” of risk-bmale-to-ma!e sex, intravenous drug use, and a woman’s bisexual partner-become less and less useful in predicting individuai or community risk. Increasingly, the virus dives below the level of our riskcategory horizon, and many of our traditional measures of risk assessment and risk-reduction education become ineffective for protection. 4. These infected youngsters and their circles of friends and Iovers are entering the most sexually active period of their lives, and for those who use drugs, the most intense period of drug use. This applies to both frequency of risk behavior and number of partners. Further, the connection be-

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tween drug use and sex (romantic or commercial) will be most intense in the period of the late teens and early twenties for these youngsters, especially in terms of the addiction to crack cocaine. 5. Tare great majority of these infected adolescents are not aware that they are infected: most of them do not consciou:Jy consider themselves at high risk; nor do their partners. Regrettably, because of our failure to use the HIV antibody test to maximal advantage as a public health diagnostic tool, we can only base our estimates of current infection on indirect inferences from case diagnoses and fragmentary sample surveys. However, even a low-end estimate of 1,000 HIV-infected adolescents in New York City has extraordinary implications for public health and clinical services alike. It is by now a clichC to talk of the risk-seeking behavior of adolescents and of their illusions of immortality and invulnerability. These factors clearly hamper all attempts to provide risk-reduction education that is effective, especially when the repeated, expli,cit, and straight-talking approach that is the only one likely to register over the background noise of adolescence is impeded by moralistic objections and the tired old saw that confuses education about a topic with advocacy of that topic. In New York City, the median age at first intercourse is between 15 and 16 years. No one knows the median age at first use of crack, but I suspect it is lower. Adolescence, especiaiiy in the urban context, is of course the time of experimentation with sex and with drugs. In addition to the risks of unprotected heterosexual and homosexual exposure within communities where the virus is highly prevalent, many adolescents temporarily engage in behaviors that place them at very high risk but are later discarded, repressed, and all but forgotten. One example is the not-rare temporary or episodic homosexual or bisexual activity of some young male teenagers, who then later establish a firm heterosexual identity. Similarly, teenagers may be introduced to needlesharing heroin injection by an older (and in New York very probably HIV-infected) person, “shoot up” a few times over several months, and then never use intravenous drugs again, certainly not considering themselves at high HIV risk and not telling others of the history. In many of these instances, tragically, the individual recognizes the risk only years later, when an infant born tG an adult w3man has clinical HIV disease.

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JOSEPH

The epidemiological shift of HIV into minority and poverty communities in urba.n high-prevalence centers such as New York City has dual implications for teenagers. Not only are these teens at greater risk for high-risk sexual and drng behaviors but the prevalence of the virus among the adults to whom these youngsters may be sexually or drug-exposed is much greater than in the city as a whole. This phenomenon is analogous ti the dual risk of the “street kids” described later. There are, of course, special subpopulations of adolescents among whom rates of HIV infection and risks of transmission are specially heightened. Of these groups, most notably drug users, incarcerated youth, and street kids, an important fact is that there are extremely high cross-over rates (with membership of individuals in two or three groups) among the various groups, d~rd nsks to the individual are multiplied arithmetically or exponentially with membership in two or more of the groups. The association of intravenous drug use with HIV transmission and its implications for adolescents as well as adults are by now well-described. Less well recognized, however, is that currently, smokable cocaine, or crack, is a major engine driving the spread of the HIV epidemic in ?Jew York. The “hypersexual” behavior associated with crack use and addiction and the explosive rise in sex-for-drugs transactions among women addicted to crack (in the form of street prostitution and the repetitive sex of the crack house) play a role analogous to that of the gay bathhouse and the heroin shooting gallery: high-risk behavior repeated frequently, with large numbers of partners, many of whom are anonymous, causes the consequent rapid takeoff of sexually transmitted diseases (especially those with genital ulcers). These factors have powerfully potentiated HIV transmission. In addition,some crack smokers move on to injection of cocaine or injection of heroin-cocaine mixtures, and cocaine injectors apparently inject more frequently and share more needles than do heroin injectors. Many more females and adolescents are found among crack addicts than among heroin addicts because of the absence of requirements for intravenous injections. In fact, one might describe the entire crack epidemic as a brilliant marketing strategy of drug dealers: to take a product that retailed for $5875 per unit and repackage it to sell for $5-10 per unit.. avoiding the mess of injection, he!.ghtening the intensity of the ups and downs, and making the product much more attractive to women and young

JOURNAL OF ADOLESCENT HEALTH Vol. 12, No. &

people. Beyond crack, the future of the drug epidemic lies in other smokable purified derivatives, and thus the heightened risk for teenage heterosexual transmission associated with drug use is most likely to persist. Street and runaway youth in New York City are undoubtedly the highest-risk adolescent group for HIV infection. Many are, or have been, involved with intravenous drugs. Many, both boys and girls, are involved in prostitution to survive; the. male homosexual “johns” who patronize the boys are, of course, themselves at very high risk. Among these adolescents the risk factors multiply: many of the boys who engage in homosexual prostitution consider themselves heterosexual in their private relationships and often are sexual partners of their female counterparts, with whom they may also be sharing drugs. Incarcerated adolescents, like incarcerated adults, have very high rates of current and previous substance abuse and thus are at high risk of acquiring and transmitting HIV infection. The incarcerated population presents an opportunity for education and risk reduction and early entry into treatment if infection can be identified. The foregoing discussion is based on New York City and may be directly applicable to other highprevalence US. c&es. In the next decade of the epidemic, two major patterns of infection and spread will, further, define themselves: In the highprevalence urban areas, AIDS will continue to be prevalent in poverty and minority communities and will be increasingly transmitted heterosexually, and actual risk will be increasingly difficult to correlate with traditional high-risk behavior. In the lower-prevalence smaller cities, the towns, suburbs, and rural areas, however, AIDS will rem&tin more heavily clustered along traditional risk-group lines: that is, among gay and bisexual men and intravenous drug users and their sex partners. A greater proportion of these gay men (and gay teens) will remain closeted than in the magnet cities. Overall prevalence of infection and illness will remain much lower. Though occasional local rural epidemics will occur (as have already occurred in Belle Glade, Florida, and rural Georgia), they will be based on the direct connection with intravenous drug use and most always involve poor and minority residents. Thus, outside the high-prevalence cities, prevention and early treatment strategies aimed at adolescents (as at adults) need to continue to be focused

December 1991

on individuals and groups at perceived highest risk. Conversely, in New York City and similar environments, it is the much larger pool of disadvantaged inner-city youth who form the high-risk group. The preceding should not be construed as denying the importance of much more general AIDS prevention education for the entire population cf adolescents (and adults), which needs continuation and qualitative and quantitative improvement. But the focusing of effort and resources for maximum prevention impact should reflect differential risk patterns. What are the public policy initiatives that need to be expanded or newly undertaken to intervene effectively and slow the epidemic among U.S. adolescents? The first is, of course, the continuation of efforts to make AIDS, drug, and sex education universal in the schools, beginning with age-appropriate material in the earliest primary grades and progressing in appropriate sequence through high school. In many areas, including New York City, there is a good deal more rhetoric among and from educators and advocates than actual instruction of children in these topics. It also bears remembering that many of the highest-risk adolescents are no longer in school and thus can only be reached much earlier in childhood, and by media and organizations that speak credibly to out-of-school youth. Both in and out of school, the key to early identification of adolescents infected with HIV (for purposes of early medical intervention, for identification of other infected partners, and for prevention of onward transmission) lies in the availability of primary health care services, accessible and trusted by the adolescent. Whether these are school- or community-based, they are in short supply indeed. New York City conta.ins 3% of the nation’s adolescents and more than one third of the nation’s reported adolescent AIDS cases. Even though HIV prevalence nationwide among adolescents is likely an order of magnitude less than among New York City adolescents, many times the number must be infected nationwide. With several thousand currently infected adolescents in the United States, there is an ‘increasing need for treatment of early and advanced HIV infection, not simpl’y prevention of future infection. We have as yet little detailed knowledge of the biology of HIV disease in adolescents, nor much indication from current clinical trials of adolescent-

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specific issues in the diagnosis and treatment of opportunistic infections or HIV infection itself. Adolescent-specific research should be supported, as should the increased availability of clinical services, especially in the geographic areas of high prevalence. Similar to the lack of accessible and tailored p+ mary care services is the problem of drug treatment for adolescents, both as a preventive measure against HIV transmission and as a focus for early diagnosis and treatment of HIV disease. For heroin-injecting adolescents, especially those who cannot or will not receive effective drug treatment, and for those (the majority) who are sexually active, proactive programs of clean needle exchange are a necessity. Ideally, needle exchange can provide a bridge into definitive drug treatment. To withhold this specific transmission-reducing measure on the basis of the flawed logic that labels family planning for teen,irgers a stimulus to promiscuity is both unconscio&& and foolish. Street youth hhve survival concerns and needs which are usually (but not always) more immediate than health services. For them, @mar;: health care, HIV services, and drug treatment are generally best included in (or tightly linked by referral mechanisms from) broader programs of support, especially of emergency safe housing. But AIDS is, after all is said and done, an epidemic oi an infectious, sexually transmissible aisease. Among adolescents, as among adults, it represents ti public health emergency within which exists extraordinary civil liberties considerations and not the converse. We have failed to grasp the importance of that distinction,, at least so far, and thus have continually failed in what is always the first duty in an epidemic: protection of the uninfected. This is as true for adolescents as it is for adults, and the appropriate remedies are the same. Greatly expanded use of voluntary counseling and HIV-antibody testing, mandatory confidential reporting by physicians of HJV-infected individuals to public health authorities, and vigorous programs of contact tracing and partner notification are ele-

ments necessary to slowing the transmission of the virus. This is so whether we consider the urban setting

where HIV transmission

is growing in intensity

among heterosexual poor and minority youth or the rural or other setting of much lower prevalence where transmission is concentrated in a much smaller number of high-risk individuals.

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JOSEPH

Programs of expanded testing, infection reporting, and contact tracing can be designed and implemented with careful attention to the protection of confidentiality. Expansion of treatment services is a necessary correlate but not a prerequisite for these public health protective measures. With early identification and entry into clinical care now clearly demonstrated to benefit the individual, it is medically negligent not to take these

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steps, particularly for groups such as adolescents, among whom the vast majority of those currently infected have no knowledge of their infection. The classical apgroaches to both prevention and early treatment have now come together in the AIDS epidemic, perhaps more among adolescents than any other demographic group. We fail both the infected and the uninfected if we do not recognize and act on this fact.

AIDS and adolescence: a challenge to both treatment and prevention.

JOURNAL OF ADOLESCENT HEALTH 1991;12:614-618 AIDS and Adolescence: A Challenge to Both Treatment and Prevention STEPHEN C. JOSEPH, M.D. Even in Ne...
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