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AIDS, Sexual Behavior, and Intravenous Drug Use (1989)

Chapter: 3 AIDS and IV Drug Use

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Suggested Citation:"3 AIDS and IV Drug Use." National Research Council. 1989. AIDS, Sexual Behavior, and Intravenous Drug Use. Washington, DC: The National Academies Press. doi: 10.17226/1195.
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Suggested Citation:"3 AIDS and IV Drug Use." National Research Council. 1989. AIDS, Sexual Behavior, and Intravenous Drug Use. Washington, DC: The National Academies Press. doi: 10.17226/1195.
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3 AIDS- and IV Drug Use Intravenous (IV) drug users occupy a unique position in the trans- mission chain of HIV: they pose risks not only for each other but also for their sexual partners and offspring. Although it is not possible at present to predict with certainty the future pattern of heterosexual transmission of HIV in the United States, one aspect of that pattern is gaining sharper focus: it is likely that if heterosexual transmission of the virus becomes self-sustaining, IV drug users will have been the initial source of infection for continued sexual transmission to heterosexuals who c30 not inject drugs (Newmeyer, 1986; Des JarIais, 1987a; Des JarIais et al., 1987~. The threat posed by IV drug use has focused attention on the extent of existing HIV infection among IV drug users; on the current state of knowledge concerning the drug-use and sexual behaviors of this population, inclucling childbearing; and on the number of indi- viduals at risk of acquiring infection through behaviors associated directly or indirectly with IV drug use. Unfortunately, information is scanty in many relevant areas. In the United States and Europe, the majority of the cases of heterosexually transmitted AIDS has occurred in IV drug users' sexual partners, who themselves may not be using drugs (Harris et al., 1983; Des Jariais et al., 1985; Fried- man et al., 1986; Newmeyer, 1986~. The majority of cases of AIDS among children has occurred as a result of perinatal transmission from HIV-infected mothers who acquired the infection through drug use (Newmeyer, 1986; Ginzburg et al., 1987; Macks, 1988~. In this chapter the committee reviews what is known about the behaviors associated with HIV transmission among people who inject 186

AIDS AND IV DRUG USE ~ 187 illicit drugs; these include needle-sharing, sexual behavior, and child- bearing. To highlight data gaps and the research needier] to fill them, the chapter also examines the current state of research methodology and the quality of existing data on risk-associated behaviors ant} on the size of the IV drug-using population. The AIDS epidemic and the role of {V drug use in the transmis- sion of HIV have also focused the nation's attention on the prevention of drug use and the efficacy of drug treatment programs. These issues are of great concern to the Academy complex) and to the nation; yet it is not possible to review the extensive literatures of these topics here. The committee believes that primary prevention of drug use is an important national goal, but questions remain as to whether even substantial improvement in primary prevention would reduce injection behavior. Because many people report smoking marijuana and relatively few go on to inject heroin or other injectable drugs, the efficiency of attempts to stop marijuana use as a way to prevent IV drug use is questionable. Nevertheless, primary prevention of IV drug use is critical in the light of HIV infection; such prevention requires a better understanding of the complex behaviors and conditions that surround the injection of illicit drugs. Illicit cirug use has been a Tong-standing social problem in this country, and public policies to deal with it have resulted in drug treatment and law enforcement programs. Yet many of the policies establisher! in the past are inadequate for the problems presented by the AIDS epidemic today. For example, much of what is known about {V drug use comes from studies that used samples recruited from heroin treatment programs; little is known about individuals who inject cocaine or amphetamines, about the more prevalent patterns of multiple and concurrent drug use, or about those who have never sought treatment. To make rational decisions about the kinds and amounts of resources to be directed toward drug-use problems, the government needs quantitative information on the size of those problems. As of November 14, 198S, 20,752 cases of AIDS hac! been diagnoses! in indivicluals who reported {V drug use (CDC, 1988~. Although the number of HIV-infecte<1 {V drug users is not known, seroprevaTence data from local convenience samples show rapid growth in infection rates once the virus is introduced into an {V drug-using community 1The Academy complex comprises the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. Studies of the efficacy of drug treatment and the capability of existing programs to prevent primary drug use are cur- rently under consideration at the Institute of Medicine.

188 ~ UNDERSTANDING THE SPREAD OF HIV (Angarano et al., 1985; D. M. Novick et al., 1986; Robertson et al., 1986; Moss, 1987; L. F. Novick et al., 1988~. However, estimates of the total number of individuals at risk of HIV infection from injecting illicit drugs are subject to considerable error; this problem is treated in detail in the last section of this chapter. The quality of existing data is not adequate to answer the diffi- cult questions AIDS poses because the current data collection system is only designed to measure crude trends. In the past, law enforce- ment and other governmental agencies have been more concerned about trends in the number of drug users than about absolute lev- els. For these agencies, increases in the numbers justified calling for more public resources; decreases allowed policy makers to direct resources elsewhere. Unfortunately, resources to meet drug program needs have been persistently scarce. Treatment programs have been so desperately starved for resources that they could not meet the demand for their services. The total number of drug users was a moot issue in many cities; whatever that number was, it exceeded the number who coup be served. Controlling the spread of the AIDS epidemic demands more knowledge about the size of the IV drug-using population and the dynamics of viral transmission in this group. Efforts to control the spread of other viral infections have not produced information on the dynamics of infection that would be helpful in preventing the spread of HIV. The transmission of other blood-borne viral infections among {V drug users, most notably, hepatitis B virus, occurrent rapidly and pervasively (Kreek et al., 1987~; in some communities, in fact, the hepatitis B virus saturated the {V drug-using population before transmission studies could be initiated (Louria et al., 1967; Hessol et al., 1987; Lettau et al., 1987~. Data are still needed on the distribution and variation of behaviors that transmit HIV, the number of IV drug users, and the proportion of users infected with the virus. Such data are critical to planning for future health care needs, targeting prevention programs, counseling the infected, and protecting the uninfected. Yet despite the gaps in the current state of knowledge about {V drug use, enough is now known to slow the spread of infection in this population. As discussed later in this chapter, increasing the capacity to treat IV drug use, expanding innovative programs to provide for safer injection, and creating a system to monitor the efficacy of AIDS prevention efforts shouIcl be undertaken now. The severity of the AIDS epidemic does not permit a "business-as-usual" approach to the problems associated with IV drug use. These problems call

AIDS AND IV DRUG USE ~ 189 for innovative solutions that take into account the relevant risk- associated behaviors and the complex social networks in which they occur. Because the material inclucled in this chapter is presenter! in some detail, the committee highlights below some major points about IV drug use and HIV infection: . The IV drug-using population is heterogeneous with re- spect to drug use, life-style, and risk-associatec! beliav- iors. . Although the lay press has expressed some skepticism about {V drug users' capacity and motivation for behav- ioral change, existing data indicate that, indeed, much change has already occurred in some groups. Targeting prevention programs to specific at-risk popu- lations will increase the probability of successfully halt- ing the spread of infection while conserving scarce re- sources. . A clearer understanding of the dynamics of viral trans- mission and the prevalence of HIV infection and risk- associated behaviors is needed. HIV seroprevaTence data show tremendous geographical variation. Therefore, considerable opportunities remain to halt the spread of HIV infection in many parts of the country and even in uninfected groups that reside in areas with high rates of infection. The committee has divided its discussion of these issues into four major sections: (1) drug-use behaviors that transmit HIV, (2) risk reduction among IV drug users, (3) conducting research on IV drug use, and (4) measuring the scope of the problem. DRUG-USE BEHAVIORS THAT TRANSMIT HIV Two types of behavior are important in examining the problem of AIDS among IV drug users: (1) sharing contaminates! injection equipment and (2) sexual behaviors that are known to transmit HIV. Sharing Drug Injection Equipment The use of nonsterile injection equipment may account for a range of infections in IV drug users, including bacterial enclocar(litis, hem atitis, malaria, and celluTitis or soft tissue infections (Louria et al., 1967~. As the number of people with whom injection equipment is

190 ~ UNDERSTANDING THE SPREAD OF HIV shared increases, so does the risk of HIV infection (Chaisson et al., 1987b). As with other blood-borne infections to which TV drug users are prone, HIV spreads from the infected to the uninfected! user pri- mariTy by the sharing of bloo~l-contaminatecl injection equipment, which serves as the vector of the virus. IV drug users share injection equipment for a variety of reasons: pragmatically, clean "works" (the collective term for injection para- phernalia) are scarce; legally, the possession of injection equipment is a criminal offense in many states; socially, sharing represents a form of social bonding among {V drug users (Ffiedman et al., 1986~. Be- fore describing the injection behaviors associates! with transmission, we discuss the setting in which drug use occurs. Social Context of Needle-Sharing Sharing injection equipment is common among {V drug users (Black et al., 1986; Brown et al., 1987~. Indeed, some studies have shown that essentially all {V drug users report needle-sharing during some period of their drug-use careers (Black et al., 1986~. People are not born injectors; they learn this behavior in the presence of others who have already been initiated (Powell, 1973; Harding and Zinberg, 19773. As discussed below, a lack of equipment and injection skills, together with certain social and physiological factors that surround IV cirug use, affect the likelihood of needle-sharing. Initiation into Drug Use. Much like the first sexual experience, the first injection experience may be anticipated or expected but not planned for (Des JarIais et al., 1986c). Curiosity about {V drug use, whether sudden or Tong-standing, and association with people who inject drugs often lead to a moment when the uninitiated is present while drugs are being injected. The desire to join in can result in sharing both drugs and injection equipment. Few people have hypo- dermic injection equipment "around the house," and few are inclined to pierce their own skin with a needle. Therefore, newcomers to the {V cirug-use world are likely to arrive without the proper equipment and to require help in executing the first injection. These circum- stances make it highly probable that a novice will begin injecting in the presence of others and will share the equipment of those teaching the "art" of injection. The sharing of drugs and equipment that occurs during initial and subsequent drug-use episodes leads to the notion that communal or joint use is as natural as sharing alcohol, ice, and glasses at a cocktail party.

AIDS AND IV DRUG USE I 191 Contrary to popular myth, the first injection of heroin does not necessarily lead to addiction, and not all heroin users are addicts (Powell, 1973; Robins et al., 1975; Gerstein, 1976~. Some individuals experiment with it for a period of time and then quit; others are intermittent users, injecting only on weekends (so-called "weekend! warriors" ~ or on isolated occasions "hippies" ~ (Zinberg et al., 1977~. Indeed, initial IV drug-use experiences are not necessarily pleasur- able. Heroin use involves a combination of pleasure and discomfort. Continued use over time involves both an acquired sense of pleasure and a differential tolerance for heroin's various effects. Popular Tore about heroin users holds that, once they are "hooked," their appetite for the drug is so great that they will run any risk to obtain it. In contrast, research has shown that users adjust their consumption to such external factors as price and avail- ability (Waldorf, 1970; Hanson et al., 1985~. This ability to adapt to various social and market forces also sustains the belief among many users that they are not addicts but merely visitors to the heroin scene who are still in control of their lives (Fields and Walters, 1985~. Adolescent IV Drug Use. To understand more clearly the process of initiation into heroin use,2 it is helpful to consider the factors that are associated with adolescent drug use. Although studies of drug use among adolescents have not focused on {V use specifically, there are some data indicating that {V drug use among teens is rare. In 1982, adolescents made up only 12 percent of those entering treatment programs, most of which focus on heroin addiction; opiate use accounted for less than 2 percent of adolescents seeking admission to treatment (Polich et al., 1984~. Nevertheless, more information is needed on how this behavior is distributed within the adolescent population. Early initiation into drug use and higher levels of use have been associated with problems in the family environment, inclucling struc- tural factors (e.g., separation, divorce, and single-parent households) and functional factors (e.g., poor communication and the absence of harmony and warmth in the home) (Anhalt and Klein, 1976; Brook et al., 1982; Evans and Raines, 1982; Rachal et al., 1986; Zarek et al., 1987~. In most studies, however, the influence of peers, espe- cially older siblings ant! early sexual partners, was found to be even more powerful than family influences in predicting adolescent (lrug use, although the effects of each kind of influence were nevertheless 2There has been much less research on initiation into the injection of other illicit drugs (e.g., cocaine or amphetamines) than on initiation into heroin use.

192 ~ UNDERSTANDING THE SPREAD OF HIV significant and independent (Kandel et al., 1978; Brook et al., 1982, 1986~. The impact of peers was also found to be related to the type of drug used and was more closely tied to behavior than to attitudes (Huba and gentler, 1980; Krosnick and Judd, 1982; Kandel et al., 1986; R. E. Johnson et al., 1987~. An ethnographic study (Lourie, 1986, 1988) of mate and female working-cIass adolescents in Lowell' Massachusetts, reported that drugs, sex, and violence were sources of physical stimulation and escape for those teenagers, and became central themes of the peer group-associated life-styTe. The respon- dents in this study perceived society as offering them no access to legitimate work and pleasure. Friendship N~7~:7l1nrt.~ n.nd In f:q~n.n.IP R~l~t,~n chin ~ _ ~ VVV~ ~ TV _ ~~VWVV~ ~ Van VV~V - Once initiated. the iv drug user may continue to inject with those who provided an entree into the drug scene. Needle-sharing is reportedly an integral part of injection and can provide a social bond within the group (Des JarIais, 1988~. Over time, the ties that bind group members may loosen, and individuals may move on to inject with other groups or with another individual in the context of a personal relationship (that may also involve sex); other injection patterns include drug use in more anonymous situations (e.g., "shooting galleries," the communal injection sites often found in large cities) or alone. Pragmatic issues , v . . . .. . .. . foster injection groups: individuals can pool scarce resources, such as money, drugs, and injection equipment, and the group provides some protection against the violence associated with illicit drug use and the threat of discovery by law enforcement officials. Prior to AIDS, sharing was reported to provide "a sense of successful cooperation within a hostile environment" (Des Jarlais. 19881. ~ ~ ~ J The proportion of {V drug users who have an intimate sexual relationship with another drug user is not known. However, Des JarIais and colleagues (1986c) suggest that male and female "running buddies" are likely to share injection equipment and have sexual relations. Sharing injection equipment among friends and injecting each other appear to have strong sexual connotations. Male "running buddies" may share needles and the same women in serial sexual relationships. Shooting Galleries. have to secure both drugs and injection equipment. sanctions against the possession of either, many users may be inclined to "shoot up" shortly after a drug purchase. Those who are addicted and suffering drug hunger or withdrawal symptoms may also want Once they have been initiated, regular users ~ ~ ~ ~ ~ Because of legal

AIDS AND IV DRUG USE ~ 193 to inject promptly. Even if they are not addicted, some users, out of a classical type of conditioning, will fee! the urge to inject the drug immediately after purchasing it (Wikler, 1973; Des JarIais et al., 1985~. All of these conditions can increase the likelihood of injection with used equipment. In large cities, "shooting galleries" have flourished as communal injection sites, often in apartments or abandoned builclings. The operators of the shooting galleries charge a small fee for use of the site, injection water, and rental of injection equipment. Often, the equipment has been used by other addicts and inadequately sterilized or cleaned to remove contaminating blooc! and infectious pathogens, including HIV (Des Jariais et al., 1986a). In cities with relatively few IV drug users, the equivalent of a shooting gallery may be the clearer's apartment, a rented room, or a hotel room in which the deafer makes "house works" available to inject drugs at the time of purchase. The house works are borrowed, used to inject the drugs, and returned to the dealer for the next user— again, often without adequate cleaning or sterilization. Renting or borrowing works reduces the risk of arrest for possession of (lrug- related paraphernalia. The use of injection equipment provided in shooting galleries and of house works provided by drug dealers results in syringe- and needle-sharing that involve unknown numbers of afflicts. The blood exchanged in these situations is likely to cut across existing friendship groups. Mechanics of Drug Use and Sources of Contamination Although "needle-sharing" is a convenient shorthand for the practice under discussion, there are at least five elements of the IV drug user's paraphernalia that carry the potential for contamination: the syringe, needle, "cooker," cotton, and rinse water. Collectively, these are known as the "works" (Newmeyer, 1988~. The Syringe. One possible mode of contamination is through infected blood that remains in the syringe between uses. This con- clition frequently occurs when users "boot," that is, when they draw blood back and forth into a syringe multiple times while it is inserted into a vein to ensure that all traces of the drug are removed from the syringe. (Booting does not occur when users practice intramuscular or subcutaneous injection, also referred to as "skin popping.") Decontamination by bleach, alcohol, liquid dish detergent, or

194 ~ UNDERSTANDING THE SPREAD OF HIV hydrogen peroxide is more likely to be effective if the syringe is flushed to at least the highest level reached by the infected user's injection. Bleach, alcohol, and hydrogen peroxide have been shown to inactivate the virus in vitro (Resnick et al., 1986; Flynn et al., l98Sb). However, the sterilization of injection equipment is not without problems, as some disinfectants may dissolve the silicone lubricant of the syringe plunger, thus making its operation quite stiff. The Needle. Contamination can also occur when a droplet of infected blood remains inside or outside the needle. Decontamination is likely to be effective if the disinfectant is flushed through the needle and the needle is dipped into the disinfectant. The Cooker. A cooker is the small container (e.g., a spoon, a bottle cap) that is used to dissolve the injectable drug, which is usually a powder. Infected blood can be pushed out of the needle or syringe and into the cooker in the process of drawing up a new shot of the drug. Effective sterilization of the needle and syringe would obviate the possibility of contaminating the cooker. Heating the cooker between shots could also kill the virus, but this is not the usual procedure among heroin users; even if the cooker is heated, the temperature may not be high enough to sterilize it and its contents. There is some anecdotal evidence that, in the post-AIDS era, passing the cooker over the flame a few more times may now be more common. (However, amphetamine users generally dissolve their drug in cold water, often simply using the small bag that originally contained the drug and saving this "washbag" for an extra shot.) The Cotton. A small piece of cotton is sometimes used to strain out undissolved impurities from the solution in the cooker as it is drawn up into the syringe. Instead of disposing of the cotton after each use, an {V drug user will often "beat the cotton" with a small amount of water to extract one more bit of the cirug. The cotton thus can become contaminated with the blood of infected users. If the needle and syringe have been sterilized, however, the cotton is less likely to be a source of infection. The Rinse Water. Water is used to rinse out syringes and nee- dles before they are reused not necessarily to decontaminate the equipment but to prevent clotting and therefore unusable works. If there is no effective decontamination step (e.g., multiple rinses with

AIDS AND IV DRUG USE ~ 195 a bleach solution), the use or reuse of a common rinse water supply can be a source of contamination. The details of injection practices related to sharing, booting, rinsing, and heating the cooker vary greatly; in addition, these be- haviors are constantly evolving in light of the awareness of the risk of HIV transmission. It is difficult to assess the impact of these behavioral changes on stemming the spread of HIV. An interesting variation in injection behavior described recently in Baltimore hi. Newmeyer, Haight-Ashbury Fiee Medical Clinic, San Ffancisco, per- sonal communication, May 25, 1988) enables users to share drugs without sharing the needle or syringe. To ensure that a drug is split equally between users, half of the contents of a single syringe is injected into a second syringe. In fact, there might still be an HIV transmission risk if either syringe were contaminated before the drug-sharing procedure, but the likelihood of contamination is much less because the drug rather than the needle is shared. Frequency of Injection Another factor associated with HIV infection is the frequency of injection: those who inject drugs frequently are more likely to be seropositive than those who inject less often (Blattner et al., 1985; Des JarIais, 1987b). Some IV drug users are har~l-core addicts who inject drugs many times every day; some are otherwise successful micicIle-ciass users who inject less frequently. Still other {V drug users inject many times a (lay for a few months and then stop; some others inject only a few times a year.3 The sharing of injection equipment appears to be common be- havior in both IV drug users who inject frequently and in those who inject less often (~iediand et al., 1985~. However, more frequent injections are likely to mean more episodes with shared equipment, thus increasing the likelihood of HIV infection. In addition, for IV drug users who are addicted, the symptoms of drug withdrawal can heighten the sense of urgency or desire for the drug and decrease the likelihood that safer injection practices will be used. Finally, whether an IV drug user did most of his or her injecting prior to 1975 or later will greatly affect his or her risk of HIV infection. Other important 3Data from the Client-Oriented Data Acquisition Process (CODAP; see also footnote 8 in this chapter) indicate a wide range of variability in the frequency of drug use prior to admission to drug treatment (NIDA, 1981~. The range is from no use in the past month to three or more times daily in the past month. Gerstein (1976) also distinguishes between different types of IV drug users, ranging from the hard-core "strung-out" users who inject frequently to situational users who inject only occasionally.

196 ~ UNDERSTANDING THE SPREAD OF HIV variables in determining the risk of HIV infection include the preva- lence of infection in the local population, the number of people who practice needIe-sharing, the number and frequency of injections, and the injection route (intravenous, intramuscular, or subcutaneous). Polydrug Use One consistent finding with significant implications for treatment and prevention efforts is that of multiple drug use among those who inject drugs. Studies of treatment populations (B. D. Johnson et al., 1985; Ball et al., 1986) suggest that a majority (60-90 percent) of TV heroin users report regular use of at least one other nonopiate. (A survey of approximately 100 former heroin users enrolled in methadone maintenance clinics in the New York City area found that 91 percent also reported {V cocaine use [Brown and Primm, 1988~.) The choice of drugs for injection varies among different drug subcultures and over time. Heroin was the dominant injectec3 drug a few years ago, but today, {V drug users may also inject cocaine, heroin and cocaine in combination, or a variety of other drugs, including amphetamines (Black et al., 1986~. Cocaine has been linked to HIV infection in New York City and San Fiancisco (Chaisson et al., 1988; Ffieciman et al., 1988~. Among 673 IV drug users surveyed in San Francisco, IV cocaine use signif- icantly increased the risk of HIV infection (Chaisson et al., 1988~. Unfortunately, to (late, some forms of drug treatment, including methadone, have not been effective for cocaine dependency. Indeed, Chaisson and colleagues (1988) found that 26 percent of cocaine users who were aIreacly in Tong-term methadone treatment began injecting cocaine after they entered treatment. Injection practices also appear to vary for different drugs. With cocaine's shorter-lived "high," {V drug users who shoot cocaine may inject themselves repeatedly until their supply is exhausted thus injecting themselves more frequently than if they were using heroin alone.4 Cocaine is associated with HIV infection in several ways. When cocaine is injected! with nonsterile injection equipment, it poses the risk of blood-borne HIV infection. When it is smoked (as "crack"), it can be associated with high-risk sexual activity because crack frequently heightens perceptions of sexual arousal (Ffiedman et al., 1988~. Like heroin, it can be used at or near the site of purchase 4 Gold and coworkers (1986) report that cocaine's desired subjective effects are so rapid and short-lived that administration must be repeated every 2~30 minutes to maintain the high. Siegel (1984) describes individuals who use cocaine 3-20 times per day.

AIDS AND IV DRUG USE ~ 197 in so-called "crack houses." Unlike heroin, however, crack is cheap and relatively easy to use, and any evidence of its possession is easily obliterated factors that have probably contributed to its popular- ity (Inciarcli, 19537~. The use of crack can result in increased risk of HIV infection owing to- decreased sexual inhibitions and an increased desire for cirugs. Outreach workers in Harlem report finding women and girls (some only in their early teens) who are engaging in unpro- tected intercourse in exchange for either money or crack (Ffiedman et al., 1988~. Moreover, ethnographic data reported by Ffiedman and colleagues (1988) indicate that crack use among women can lead to prostitution, which in turn can lead to heroin use, thus ampli- fying among these women the risk of acquiring and spreading HIV infection. Sexual Behaviors ant} {V Drug Use As of November 14, 198S, CDC (1988) reported 3,359 cases of AIDS that were attributer! to heterosexual transmission. Of the total cases, 2,154 (64 percent) were people who reported heterosexual contact with a person with AIDS or a person at risk of AIDS. The other 1,205 (36 percent) were people who reported no other risk-associatecT behavior but were born in countries in which heterosexual trans- mission has played a key role in the spread of the virus. The vast majority of the cases that have been diagnosed among those born in this country is thought to be associated directly with IV drug use or with sexual contact with an IV drug user (Brown, 198~3~.5 Yet less is known about the dynamics of heterosexual HIV transmission from {V drug users than about transmission from index cases in hemophiliac, transfusion recipient, or bisexual mate populations. The general effi- ciency of heterosexual HIV transmission is not known, but it seems likely that the prospects for understanding this dimension of the epi- clemic would be improved if attention were directed toward the most frequent occurrence of the phenomenon: sexual transmission related to the {V drug-using population. In the past, drug-use behaviors in the IV drug-using population received more attention than sexual behaviors; now, however, sexual 5Substance use may be associated with sexually acquired AIDS aside from any direct role played by IV injection equipment as a vector for HIV. The use of mood-altering drugs may have a disinhibiting effect, whether for pharmacological or cultural reasons (Reinarman and Leigh, 1987), and may result in unsafe sex practices that otherwise might not have occurred. Recent studies point to strong noncompliance with safer sex techniques when alcohol and other drugs have been used (Stall et al., 1986; Faltz and Madover, 1987; Flavin and Frances, 1987~.

198 ~ UNDERSTANDING THE SPREAD OF HIV behaviors have become the focus of recent studies, which are provid- ing some insight into the range of behaviors that occurs. Surveys of IV drug users who had recently entered methadone treatment pro- grams (in New York City; northern New Jersey; San Antonio, Texas; ant] Los Angeles, CaTifornia) found that more AIDS prevention mea- sures were being taken with respect to drug use than with respect to sexual activity: only 14 percent of the respondents in these studies reported that they had begun or increased condom use (Battjes and Pickens, 1988~. In another study (Primary et al., 1988), more than half (60 percent) of the IV drug users' sexual partners did not in- ject drugs; however, mate respondents were more likely than female respondents to report a noninjecting sex partner. Only 5 percent of the study participants reported condom use; among this 5 percent, condoms were user! in only 35 percent of all sexual encounters. Sexual behavior and drug use are topics that are often investi- gated separately by researchers whose careers have focused on one or the other activity. Yet sex and drug use are apt to be inextricably linked, and the nexus between these two most private activities is a critical area for AIDS research. In certain contexts, sexual behavior cannot be separated from drug use. For example, among female IV drug users who are the sexual partners of mate {V drug users, sex is often used to obtain drugs or is an aspect of a relationship based on drug use. A social structure that supports mate dominance may make it difficult for women to propose behavioral changes (to say "no" to sex, to use condoms, or to refrain from certain types of sex). Women who are financially dependent on men or who exchange sex for money or other necessities of life may face the dilemma of choosing between economic survival and unsafe sex (Worth, 1988~. Data from samples recruited through drug treatment programs, such as the Treatment Outcome Prospective Study or TOPS (see foonote 19 in this chapter), find that the bulk of the active drug- using population consists of young men (Ginzburg, 1984~. Indeecl, men constitute 74 percent of treatment admissions for heroin use. Women constitute a proportionately smaller group, although over the last decade the problem of cirug addiction among women "is one of large and growing proportions" (Cuskey and Wathey, 1982~. Nevertheless, women are often omitted! or seen as peripheral in ethno- graphic accounts of the heroin world, and studies of female IV drug users are rare (Rosenbaum, 1979a). The links among TV drug use, heterosexual transmission, and perinatal infection may bring further attention to women who are at risk of AIDS through IV drug-related behavior. A review of the 1,819 women who were diagnosed as having

AIDS AND IV DRUG USE ~ 199 AIDS between 1981 and 1986 (Guinan and Hardy, 1987) found that the majority of these women reported {V- drug use. The second most common AIDS risk factor for women is heterosexual contact with a person at risk for AIDS. Indeed, Wofsy (1987) has estimated that as many as 20,000 women whose sexual partners are IV drug users may be infected with HIV. According to Des JarIais and colleagues (1984), as many as 80 percent of mate {V drug users are in a primary relationship with women who do not themselves use drugs; female IV drug users, on the other hand, are apt to be partnered with male drug users. Thus, women are at risk of HIV infection that is both directly and indirectly associated with {V drug use. While some information on female {V drug use is available from women entering drug treatment, little is known about women who are involvecl in intimate relationships with mate {V drug users. Ethnographic studies of female IV drug users at the Stuyvesant Polyclinic and the Montefiore Medical Center in New York City (Wofsy, 1987; Worth, 1988) have found that proposals to change sexual practices (inclucling the use of condoms) require redressing the balance of power within intimate relationships. For these women, asking a man to use a condom provokes the fear of breaching relations that may fulfill the woman's sexual, personal, financial, and (lrug needs. As discussed in Chapter 2, prostitutes are at risk of acquiring HIV infection through both sexual and drug-use behaviors. A 1987 survey of street prostitutes in the New York City area indicated that approximately one half had injected drugs at least once and one third had injected drugs at some time during the previous two years (Des JarIais et al., 1987~. The prevalence of unprotected intercourse among prostitutes varies with the context of the sexual encounter; safer sex is practiced by female prostitutes in professional relation- ships more often than in personal ones (Cohen, 1987; Darrow et al., 1988~. The prostitute population is worthy of further attention, as mate and female prostitutes are at risk of being infected by and of spreacling infection to their sexual partners, both professional and personal, as well as to their offspring. Because of the link between IV drug use and perinatal transmis- sion of HIV, information is needed about contraceptive and child- bearing behaviors in the IV drug-using population. Unfortunately, currently available ciata permit only a rudimentary picture of these behaviors. Despite heroin's capacity to suppress fertility to a certain extent in women, Cuskey and Wathey5198<found tint, in New

200 ~ UNDERSTANDING THE SPREAD OF HIV York City, birth rates for addicted women were higher than those for nonacIdicted women. Others (Denser-Gerber et al., 1972; E. M. Johnson, 1987) have reported an association between drug use and promiscuity and prostitution. Women who use intravenous drugs may also be poor users of contraception. In a study that matched women on age, ethnicity, and marital status, Ralph and Spigner (1986) noted that contraception was less frequent among female ad- dicts than among nonad-dicted women. The importance of these data becomes apparent in view of the fact that perinatal HIV transmission can occur if the mother is infected. With the majority of women with AIDS in their childbearing years (CDC, 1987a), offspring of TV drug users may constitute a growing proportion of future cases of HIV infection. Towarc} a Better Understanding of Risk-Associated Behaviors Intravenous drug use comprises a complex set of behaviors that are enacted in diverse social situations. Drug use is a social problem that is rooted in a network of other problems; most students of drug use believe that only complex, far-reaching solutions that take into account all aspects of that network will ultimately be effective. Such solutions require the attention of a range of agencies law enforce- ment, social service, health, housing, and eclucation. Programs that address the individual in the context of peers, family, and community and those that focus on the multiple factors that influence drug use hold the most promise. Solutions to the problems of drug use will also require the attention of a range of disciplines. Many questions that will arise can best be answered by the social and behavioral sciences; others will require the expertise of pharmacology, toxicol- ogy, and other biomedical sciences. In addition, knowledge is needed on how addiction occurs and on the biological factors that influence drug use, addiction, cessation, and relapse. Finally, mechanisms to improve collaboration and coordination among those seeking solu- tions will be required for effective action. The committee thus recommends that high priority be given to studies of the social and societal contexts of IV drug use and IV cirug-use prevention efforts. The dynamics of {V drug use injection behaviors, drugs of choice, and sexual ant! contraceptive behaviors—vary over time for each drug user. They also vary across cultures and geographic loca- tions, as well as by age, race, gender, and ethnicity. These variations

AIDS AND IV DRUG USE ~ 201 have important implications for the spread of HIV that cannot be captured by or understood through cross-sectional studies that pro- vide only a "snapshot" view of evolutionary ant! variable behaviors. It will be necessary to make a long-term commitment to a diversified behavioral research portfolio on {V drug use with sufficient support to sustain these efforts. Multiple, prospective longitudinal studies are needled to keep abreast of problems and changes as they occur. Studies that seek to understand sensitive, private behaviors pose formidable but not insurmountable challenges. That it is worthwhile to devote the necessary resources to meet these challenges is indis- putable: the public health benefits to be gained, particularly for ethnic and racial minority populations, are great. As discussed in the final section of this chapter, research has consistently shown that racial and ethnic minorities bear a disproportionately large burden of morbidity and mortality associated with HIV infection. Information is urgently needed about {V drug-use patterns and how injection behaviors vary by age, race, sex, ethnicity, sexual orientation, and other demographically significant variables. (For example, women and men report quite ctifferent reasons for initiating drug use, and they also report different patterns of use Burt et al., 1979; Rosenbaun~, 1981; E. M. Johnson, 1987~.) Knowledge is also needed about how people enter and exit the {V drug-using popula- tion, the conditions under which individuals progress from sniffing or smoking injectable drugs to shooting them, how nee(lle-sharing behaviors are initiated and sustained, and how to intervene effec- tively in these dangerous practices. The committee recommends that high priority be given to research on the natural history of {V drug use, with an emphasis on prospective longitudi- nal studies of the factors associated with initiation into and cessation of {V drug use. As stated earlier, IV drug-use behaviors convey the risk of HTV infection to sexual partners and offspring. Unfortunately, how sexual and contraceptive behaviors vary and are ctistributect within the het- erogeneous IV drug-using population are incompletely understood. Although projected estimates of future HIV infection rates are sub- ject to consi~lerable variation, it is likely that a significant proportion of heterosexually and perinatally acquired infection will come from the IV drug-using population. Therefore, the committee recom- mends that high priority be given to studies of the sexual and procreative behavior of IV drug users, including methods to reduce sexual and perinatal (mother-infant) transmission of HIV.

202 ~ UNDERSTANDING THE SPREAD OF HIV Implementing the recommendations offered in the preceding paragraphs will provide the information necessary to understand some of the drug-use behaviors that transmit HIV. Yet understand- ing is only the first step in controlling the spread of (disease. Collect- ing data on dynamic, risk-associated behaviors requires a Tong-term commitment; thus, research should proceed as efforts are being made to facilitate HIV risk reduction among TV drug users. RISK REDUCTION AMONG IV DRUG USERS Although the area of research on risk reduction to prevent HTV transmission among IV drug users is only a few years old, there is already a rapidly accumulating body of knowledge that contradicts the common assumption that IV drug users are incapable of chang- ing their behavior. This section traces the history of those studies, summarizes the current state of knowledge, and indicates directions for future research. Changes in Injection Behavior The first risk reduction studies among IV drug users were conducted in New York City, where signs of infection were notes] early in the epidemic and where the greatest number of AIDS cases has occurred. Ethnographic interviews conducted in New York in the fall of 1983 among IV drug users who were not in treatment indicated that these drug users were aware of AIDS. Data from this study also indicated that many people knew the virus was transmitted through shared injection equipment, and many recognized the potential benefit of behavioral change in this practice (Des JarIais et al., 1986b). This awareness of AIDS and knowle(lge of the routes of transmission de- veloped prior to any AIDS prevention programs for IV cirug users in New York. It reportedly arose from information transmitted through the mass media and through the informal communication network among IV drug users in the city. Formal interviews of methadone patients from the New York City area were conducted in the fall of 1984 (FYiedman et al., 1987b). In a similar study, individuals in methadone treatment and prison detoxification programs were interviewed in 1985 and 1986 (Selwyn et al., 1987~. In all of the samples, the majority of respondents reported some form of AIDS risk recluction. The most commonly reported means taken to avoid! HIV infection were the increased use of illicit sterile injection equipment, reduction in the number of

AIDS AND IV DRUG USE ~ 203 persons with whom the respondent was willing to share equipment, and reduction or cessation of {V drug use. In the spring of 1985, field studies of persons selling drug injection equipment in New York showed that there had been a large-scale expansion of the illicit market for sterile injection equipment, and at least part of the expansion was attributed to concerns about AIDS (Des JarIais et al., 1985~. The demand for sterile injection equipment was so great, in fact, that counterfeit sterile needles and syringes were being sold: needles and syringes that had been used were rinser! out and replaced in their original packages, which were then resealed and sold as unused. The state of New Jersey began an ex-addict outreach program in the fall of 1985 (Jackson and Neshin, 1986; Jackson and Rotkiewicz, 1987~. The program trained ax-addicts as AIDS educators, who then went into the IV drug-using community and taught current {V drug users about AIDS: how it is transmitted and how to decontami- nate used injection equipment by boiling the equipment in water or soaking it in bleach or alcohol. Many TV drug users reported that they found instruction in sterilizing injection equipment to be useful. However, somewhat to the surprise of the designers of the program, a common response of those users reached by the ax-addicts was a desire to reduce the risk of AIDS by entering drug treatment and re- clucing or eliminating drug injection behavior. The state responded by establishing a program in which the ex-addict outreach workers distributed vouchers that could be redeemed for a period of free detoxification treatment. (Normally, this treatment would have cost the IV drug user $50-$75.) More than 85 percent of the vouchers were redeemed by IV drug users for detoxification treatment. In 1987 reports were published on the increasing use of the sy- ringe exchange program in Amsterdam (van den Hoek et al., 1987; Buning et al., in press) and the bleach distribution program in San Fiancisco (Chaisson et al., 1987a; Watters, 1987a). The Amsterdam program had actually been established prior to concerns about AIDS, but it was greatly expan(led when AIDS cases were diagnose in the city. Contrary to popular belief, the expansion of the program- from the distribution of 25,000 sterile neecIles and syringes in 1984 to 700,000 sterile needles and syringes distributecl in 1987 did not lead to an increase in the number of {V drug users in the city or to a (lecrease in the number of {V drug users entering drug treat- ment (Buning et al., 198S, in press). In another study conductecl in Amsterdam (van den Hoek et al., 1987), increased use of the needle

204 ~ UNDERSTANDING THE SPREAD OF HIV exchange program occurred simultaneously with reductions in the reported frequency of drug injection among the respondents. The bleach distribution program in San Ffancisco involved com- munity health outreach workers who distributed small bottles of full-strength household bleach. The instructions on the bottle stated that needles and syringes should be rinsed twice with the bleach and then twice with clean water. This procedure could be carried out very quickly (as compared with the previously recommended 10- to 15-minute procedure of soaking a needle and syringe in a 10 percent bleach solution). A large number of IV drug users in San Ffancisco— one half of the subjects in one study (Chaisson et al., 1987a) and two thirds of the respondents in another (Watters, 1987a) rapidly adopted use of the small bottles of bleach. A large-scale program of antibody testing and counseling was also being conducted at the same time as the bleach distribution campaign. Either one or both of the programs together may have caused behavioral change or at least sensitized IV drug users to the need for such change (Moss and Chaisson, 1988~. Other studies reported in 1987 indicate some limitations on the AIDS prevention efforts aimed at IV drug users. An evaluation of an ex-addict outreach program in Baltimore showed that {V drug users in the city were changing their behavior to reduce the risk of AIDS; however, the change could not be attributed to the efforts of the outreach workers (McAuliffe et al., 1987~. A stucly in Sacramento, California, found that knowledge of AIDS by itself did little to change the risk behavior of {V drug users in that city; most continued to engage in high-risk behavior, even though they were aware of how AIDS is transmitted and believed that they would become exposer! if they continued the behavior (Flynn et al., 1987~. In this sample, information and even perceived self-susceptibility were insufficient to alter behavior. A number of studies of AIDS risk reduction have been reported in 1988. Table 3-1 notes these efforts, as well as other recent AIDS risk reduction research. The topics of these studies inclucle risk reduc- tion associated with entry into methadone maintenance treatment (Abdul-Quader et al., 1987; Ball et al., 1988; Blix and Gronbladh, 1988; Hartel et al., 1988; Yancovitz et al., 1988), syringe exchange programs (Alldritt et al., 1988; Buning et al., 198S, in press; Hart et al., 1988; Ejungberg et al., 1988; van den Hoek et al., l98Sb), purchasing sterile injection equipment at pharmacies (Espinoza et al., 1988; Fuchs et al., 1988; Goldberg et al., 1988), information campaigns (Bortolotti et al., 1988; cle la Loma et al., 1988), and

AIDS AND IV DRUG USE ~ 205 counseling with antibody testing (Hemclal, 1986; Bottiger et al., 1988; Casadonte et al., 1988; Gibson et al., 1988; Moss et al., l98Sa; Olin and Kall, 1988; van den Hoek et al., l98Sa), as well as many studies in which the mechanism of change was not specified. There are now enough studies of AIDS risk reduction among {V drug users to derive some generalizations that describe the current state of knowledge. First, it is quite clear that TV drug users will modify their behavior to reduce their risk of AIDS. Although the studies that support this conclusion tend to rely heavily on self- reported behavioral modifications, there are enough studies in which there is some independent evidence of change to conclude that the self-reports reflect what has actually occurred. Examples of the independent confirmation of change include the increased demand for sterile injection equipment in New York City, increased use of syringe exchange programs, and acceptance of bottles of bleach for decontamination of used injection equipment. The second generalization that can be made is that there is wide variation in the percentage of drug users that reported AIDS risk re- cluction in the different studies. Percentages ranged from 85 percent in two studies in New York (Ball et al., 1988; Battjes and Pickens, 1988; Yancovitz et al., 1988) to what researchers termed "poor" in MadricT, Spain (cle la Loma et al., 1988~. Interpreting this variation is difficult for several reasons. The studies use different outcome mea- sures that range from the increased use of sterile injection equipment to entrance into drug treatment to any self-reported change in be- havior. Even when the "same" outcome measure is used in different studies, the wording of the study questionnaires may be sufficiently (different as to make comparisons across studies quite clifficult. Prob- lems in interpreting the behavioral change data also arise from a lack of specification of the mechanism or "cause" of the behavioral change. Most of the studies that have been conducted did not iden- tify causal factors; of those that did, different analytic frameworks were used to describe the mechanisms of change, which appeared to vary according to the local environment. For example, the potential effects of an AIDS education campaign in an area in which sterile injection equipment may be lawfully purchase<] in pharmacies cannot be compared easily with a similar campaign in an area in which legal access to and possession of sterile injection equipment are prohibit ited. Nevertheless, despite the problems in assessing the extent and causes of AIDS risk reduction in different geographical areas, it is still possible to conclude from the data that risk reduction has occurred,

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208 ~ UNDERSTANDING THE SPREAD OF HIV although it is highly variable. Unfortunately, researchers simply are not yet proficient at measuring and conceptualizing that variation. The third generalization concerning risk reduction among {V drug users is an apparently counterintuitive and synergistic rela- tionship between "safer" injection programs and drug treatment to reduce or eliminate injection behavior. The common assumption that providing the means for safer injection will encourage drug use ancE undermine drug treatment is contradicted by the ciata collected to ciate. The Amsterdam syringe exchange program has been collecting data longer than any other program; its results clearly show that syringe exchange has not encouraged drug use. As noted earlier, the program was begun in 1984, during which 25,000 sterile needles and syringes were distributed. The number clistributed rose to 700,000 in 1987; it is estimated that 750,000 sterile neecIles and syringes will be distributed in 1988. During this expansion period, there was no decrease in the number of persons entering either methadone main- tenance or cirug-free treatment programs. Moreover, there appeared to be no increase in the number of heroin users in the city, which remained constant at approximately 7,000-S,000. Approximately 25-30 percent of these users (or 1,750-2,400) report current injection behavior (van den Hoek et al., l98Sb). During this period, the av- erage age of IV drug users in the city increased, indicating that the group is an aging cohort with little influx of new users. Two studies from Amsterdam indelicate that the syringe exchange program might actually be associated with reductions in IV drug use rather than increases. In a study conducted by van den Hock and colleagues (l98Sb), the number of subjects who were injecting on a daily basis clecrease<1 during the time the syringe exchanges in- creased. Buning and colleagues (1986, 1988) compared IV drug users in Amsterdam who participates! in the syringe exchange program with IV drug users who clip not participate. These researchers found higher rates of neecIle-sharing and an increased frequency of injection (both of which are associated with HIV infection) among drug users who slid not use the exchange program. Although syringe exchange programs in other locations abroad are still in the preliminary stages of development, none so far has reported any increase in (1rug use among clients. Similarly, there have been no reports from these programs of increases in the number of IV drug users in the early phases of drug-use careers. It appears that the programs provide needed services to IV drug users and facilitate their entry into drug treatment without being coercive (Hart et al., 1988; Ejungberg et al., 1988~. Maintaining a nonjudgmental attitude

AIDS AND IV DRUG USE ~ 209 toward participants and providing a range of risk-reclucing options from which the {V drug user can choose may be two of the factors that are critical to the success of syringe exchange programs (Alldritt et al., 1988~. In the United States, there has been a similar complementarily between programs that provide the means for safer injection and drug treatment programs. As noted earlier, the first ex-addict outreach program in New Jersey evolved from one that taught sterilization methods into one with expanded treatment capacity (Jackson and Rotkiewicz, 1987; Jackson and Baxter, 1988~. The outreach pro- grams in New York and San Fiancisco that distribute bleach have had to develop referral-to-treatment programs and street counsel- ing components to keep up with the demand for these services (Des JarIais, 1987b). Because of the well-known difficulty of ending drug use without any relapse (see Chapter 4), many treatment programs have seen the promotion of safer injection practices as complementary to their efforts to recluce or eliminate drug injection. A number of methadone programs in Amsterdam are also sites for the syringe exchange pro- gram (Buning et al., 1986; Buning, 1987b). At least one treatment program in San Francisco is a site for bleach distribution, and several programs in New York are teaching TV (drug users how to use bleach to disinfect injection equipment (D. C. Des JarIais, New York State Division of Substance Abuse Services, personal communication, Au- gust 1988~. Although there are as yet no data from Tong-term studies, cur- rent data suggest that safer injection programs and drug treatment can be complementary means to reduce the risk of HIV transmission among IV drug users. However, more research is needed to under- stanc! the mechanisms that link safer injection programs with the actual reduction of risk-associated behavior. To successfully imple- ment innovative programs in this country, researchers and program operators must also understand how, in the absence of supporting data, people maintain beliefs about what does and does not encour- age drug use. Changes in Sexual Behavior Although there is evidence of large-scale changes in injection behav- ior among {V drug users from many different geographic areas, there is little encouraging news with respect to the sexual transmission of HIV in this population. Early studies show that relatively few IV

210 ~ UNDERSTANDING THE SPREAD OF HIV TABLE 3-2 Studies of Sexual Behavior Change in IV Drug Users Location Reference New York City Sacramento, California Multiple cities Paris Padua, Italy Casadonte et al. (1988) Mosely et al. (1988) Primm et al. (1988) Flynn et al. (1988a) Battles and Pickens (1988) Espinoza et al. (1988) Lowenstein et al. (1988) Bortolotti et al. (1988) drug users are practicing safer sex (Ffiedman et al., 1987b; Watters, 1987a; van den Hoek et al., l98Sb). Typically, for every two to three IV cirug users who report changes in injection behavior, only one reports any change in sexual behavior. More recent studies support these findings. Table 3-2 lists the studies presented at the Fourth International AIDS Conference that were related to heterosexual transmission among IV drug users. All of them found less reduction of risk-associatec3 sexual behaviors than of risk-associated injection behaviors: typically, only one quarter of those surveyed reported con- dom use. No one yet knows why sexual behaviors in this population resist change. There appear to be many potential reasons, including A realistic fear that introducing safer sex will lead to a break-up of the relationship (Casadonte et al., 1988) and difficulty in initiating a discussion of sexual topics (Mosely et al., 1988~. As noted earlier, the typical sexual relationship of an IV drug user involves a male who injects drugs and a female who does not (Des JarIais et al., 1984; Primm et al., 1988~. The asymmetries of risk and power may thus contribute to difficulties in initiating safer sex practices. In a consideration of the reasons why IV drug users are not practicing safer sex, researchers should not neglect the reasons why the heterosexual population in general is not doing so. {V drug users are often treated by researchers as a population that is separate and discrete from the general public. Yet among the public are many subgroups that may share some beliefs, attitudes, and values with IV drug users. Among respondents to a recent national telephone survey who reported five or more sexual partners in the past year, more than 30 percent indicated that they had never purchased condoms during that time (Turner et al., in press). Intravenous drug users may simply be conforming to their community norms with regard to their sexual

AIDS AND IV DRUG USE ~ 211 practices. In fact, deviation from those norms might call attention to their drug use and increase stigmatization. Moreover, it is important not to underestimate the potential for public confusion surrounding the dangers of heterosexual transmission and the negative impact of such confusion on behavioral change. Mixed messages have been given concerning the risks associated with heterosexual behavior.6 As noted earlier, there is an important exception to the lack of risk reduction in sexual behavior. Prostitutes have shown a willing- ness to use condoms with clients, although they report safer sexual practices less often in the context of personal-relationships. As discussed in Chapter 2, the determinants of patterns of sexual behavior are quite complex. It is unlikely that there is any single reason for the difficulties involved in facilitating change in the sexual behavior of most {V drug users. It will take careful research to elucidate these difficulties and their causes and to devise prevention strategies for helping inctivicluals in this group change risk-associated behavior. Sudden breakthroughs in this area are not likely. Towarc} Reducing Risk-Associatec3 Behavior Among {V Drug Users The problem of HIV infection among IV drug users and its transmis- sion to their sexual partners and offspring requires both immediate action and Tong-term research. Immediate action is necessary be- cause of the potential for the rapid spread of HIV among IV drug users within short periods. Although the current state of knowledge does not permit permanent or Tong-term solutions to drug-use prob- lems and HIV infection in this population, enough is known now, on the basis of existing research and sound management techniques, to slow the spread of disease. In June 198S, the report issued by the TOM/NAS AIDS committee concluded that federal efforts to re- duce HIV transmission among {V drug users were grossly inadequate. This committee concurs with that finding and recommends that the appropriate government authorities take immediate ac- tion to (1) provicle cirug treatment upon request for IV drug users throughout the country; and (2) sustain ant} expand} current programs that provide for "safer injection" to reach all current {V drug users in the nation on a continuing ba- sis ant} with appropriate research evaluation. Fiom a public 6See Masters et al. (1988) and R. E. Gould's article in the January 1988 issue of Cosmopolitan magazine ("Reassuring News About AIDS: A Doctor Tells Why You May Not Be At Risky.

212 ~ UNDERSTANDING THE SPREAD OF HIV health perspective, it is unacceptable that persons who want to stop injecting drugs cannot receive immediate treatment. Furthermore, there is consensus among people who work in the area of drug use that treatment can produce a dramatic reduction in drug injection, even though relapse after treatment is a continuing problem (Des JarIais, 1987a; Hubbard et al., 1988~. Preventing the spread of HIV infection requires more than acIdi- tional treatment slots, however. Problems associated with drug-use relapse ant! with retaining individuals in treatment need to be solved; in addition, support is needed-to maintain newly developed skills as- sociated with positive treatment outcomes, such as job training, employment, and interpersonal skills. Preventing further infection also requires programs to alter those behaviors that are known to transmit HIV. Admittedly, there are insufficient data on how to pro- vide the most effective AIDS prevention programs for those who inject drugs. Still, intervention programs cannot wait to implement findings that may take some time to generate. As discussed in detail in Chapters 4 and 5, prevention programs should include planner! variations of intervention strategies accompa- nied by sound evaluations to determine what is likely to be successful in preventing further infection and what is less likely to be help- ful. Currently, however, there is no national system for monitoring ongoing prevention activities for {V drug users. The committee recommencis that the appropriate government authorities take immediate action to establish data collection systems for monitoring present AIDS prevention efforts for IV drug users. At a minimum, a system is needed that provides data on the AIDS prevention services being offered throughout the country to IV drug users and their sexual partners, the rates of participation in these programs, and the characteristics of participants. Addi- tional means must be used to reach those vulnerable members of the {V drug-using population who do not come into contact with the treatment system and to assess and serve their needs. Reaching and serving these harc3-to-reach IV drug users will require innovative methods and adclitional resources. Mobile vans ant! a cadre of outreach workers familiar with the IV drug culture, who can go into shooting galleries and other settings in which risky behaviors are occurring, have proven helpful in reaching individuals who have not been in touch with other services or agencies that fleas with drug users. In short, services, whether education, information, or primary meclical or social services, must be brought to {V (lrug users; it cannot be assumed that {V drug users will seek them out.

AIDS AND IV DRUG USE ~ 213 The committee finds that the severity of the AIDS epidemic does not permit a business-as-usual approach to the problems associated with {V drug use. All opportunities for halting the spread of HIV infection should be seized, intelligently and quickly. Obviously, primary- prevention of IV drug use would be an ef- fective prevention strategy for HIV transmission associated with the injection of illicit cirugs. Yet {V drug use is a long-standing problem in American society and has withstood many prevention efforts to ciate. All previous research indicates that, despite prevention and intervention efforts, a substantial number of persons will continue to inject drugs, at least over the short term. Some of these will be persons who refuse to accept treatment; others will be persons for whom current forms of treatment are not effective. Those already using drugs should be helpecT to modify risk-associated behaviors. If abstinence from drug use is not achievable, it should not detract from the pursuit of other goals related to stopping the spread of HIV. A pluralistic, multitiered approach to HIV prevention is caller! for among {V drug users. Current studies indicate that safer in- jection programs are not associates! with increases in IV drug use and do lead to large-scare risk reduction among IV drug users. The existing data on legal access to sterile injection equipment or the use of bleach as a disinfectant do not show which is the "best" type of safer injection program. Planned variations of these programs with appropriate evaluations are needed to learn more about clesign- ing and implementing more effective programs while simultaneously preventing further infection. These variations and the evaluation of safer injection programs shouIc! include both equipment sterilization efforts and needle exchange programs. As detailed in Chapter 4, achieving and sustaining behavioral change is frequently difficult. The change that can reasonably be expected will not be perfect. For example, {V drug users may reduce the number of persons with whom they share injection equipment, but they may continue to share with a close personal friend or sexual partner. Indeed, as described later in this chapter, the use of the same injection equipment within a close relationship is sometimes not even thought of as "sharing" (Des Jariais and Friedman, 1988~. In addition, although {V drug users may exchange syringes "regularly" or decontaminate injection equipment "regularly," such "regular" risk-reducing activity may not occur 100 percent of the time. In the throes of narcotic withcirawal, almost all IV drug users report using whatever injection equipment is available (Des JarIais et al., 1986a; Selwyn et al., 1987~.

214 ~ UNDERSTANDING THE SPREAD OF HIV Given the high relapse rates of drug users after they leave drug treatment programs and the ineffectiveness of currently available treatment for some injectable drugs, the complete elimination of injection behavior is not a realistic goal. Change should be con- ceptualizecl as risk reduction rather than complete risk elimination. Moving toward a more moderate, more realistic set of goals will broaden the possible approaches to risk reduction programs; these efforts should include mechanisms to prevent relapse. The commit- tee recommends that high priority be given to research that will lead to improved drug-use treatment, including studies of relapse prevention and of treatment for cocaine depen- dence. Applier} research should inclucle planned variation and evaluation of experimental programs. Recent research indicates that HIV seroprevaTence among {V drug users may have stabilized in several areas, including New York City (Brown et al., 1988; Des JarIais, 1988), Stockholm (Bottiger et al., 1988), and Innsbruck (Fuchs et al., 1988~. Although these developments are certainly encouraging, it is important to note that stabilization in a seroprevaTence rate is also compatible with the introduction of new cases of HIV infection. Stabilization can re- sult from the simultaneous Toss of seropositive individuals (owing to migration, lack of participation in antibody testing programs after an initial positive test, and so forth) and the entry of seronegative persons into the local {V drug-using population. Modest rates of new infection could be sustained indefinitely and would not necessar- ily be detected by current survey strategies. The committee wishes to emphasize that the ciata indicating relative stabilization in HIV seroprevaTence rates in these areas should not be construed to mean that the problems of HIV infection among {V drug users in those locales have been solved. Rather, these findings should be viewed as evidence of a capacity and willingness to change risk-associatec] behaviors in a population that has been characterized in the past as uncooperative and self-destructive. CONDUCTING RESEARCH ON IV DRUG USE The difficulties involved in conducting research on IV drug use, some of which were discussed in the preceding sections, are only part of the challenge researchers face in this area. There are several additional policy-related and methodological issues that must be addressed to permit the development of intervention programs to interrupt the spread of HIV.

AIDS AND IV DRUG USE ~ 215 Research Traditions Research on illicit substance use has suffered from a disciplinary and topical balkanization, with scholars from various disciplines working independently, often with a discrete focus on a single substance. For example, biobehavioral research on {V drug use has had a twofold focus: explaining how illicit drugs can reinforce behavior and de- scribing the mechanisms of tolerance that develop after repeated administration of certain drugs. Psychiatric and psychological re- search, on the other hand, has tended to define substance use as a form of mental illness. This tradition has sought to identify the pre- cursors of illicit drug use and to assess the effectiveness of different types of psychotherapy for treatment. Sociological and anthropolog- ical research in the area has focused on drug use as a form of social behavior and thus has explored drug-user subcultures—their norms, beliefs, and values. This research has also examined the relationships between drug use and other deviant behavior, particularly criminal activity, and the relationships among race, social class, and {V drug use. Research into the causes and cures of drug use has also been complicated by competing views of drug use as a medical (awl public health) or moral (and criminal law) problem (Drew, 1986~. Most of what is currently known about drug users comes from users who have been involved in treatment programs and users who have come into contact with law enforcement agencies (Ginzburg, 1984~. Little is known about those users who are not in touch with these systems. (Some of the problems of using such circumscribed data soon become apparent when this information indicates that ethnic and racial minorities are overrepresented in public treatment programs [Ginzburg et al., 1987] and there are few ciata on individu- als who seek treatment in private health care settings.) In addition, data have been collected primarily to satisfy policy needs related to treatment and criminal justice, uses that determine what kinds of data are collected. Individuals who make plans for treatment pro- grams need to know how many people will require their services and how to make their programs culturally sensitive to the populations they serve; criminal justice agencies require information about the role of cirugs in crime. The data that serve these purposes are not nec- essariTy adequate or appropriate for infectious disease containment efforts. Researchers are only now beginning to collect data on the be- haviors associated with HIV transmission in the IV drug-using pop- ulation. The Heroin Lifestyle Study (Hanson et al., 1985), which

216 ~ UNDERSTANDING THE SPREAD OF HIV was conducted in the early 1980s in the inner cities of Chicago, New York, Philadelphia, and Washington, D.C., cast some of the first rays of light on IV cirug-use behaviors that are relevant to AIDS. What emerges from these studies is a more detailed description of behaviors that show variability by race, ethnic group, gender, age, and geographic Tocation.7 To understand more about this variability and gather more subgroup-specific information, field workers who are often ex-acIdicts and ax-offenders are being recruited to locate active IV drug users in shooting galleries, after-hours clubs, and the like. In these attempts, they gather data on- daily drug-use and related behaviors, take life histories, and make observations. Despite these promising beginnings, however, there remain cer- tain logistical hurdles and methodological problems that need to be cleared away before we can move more effectively toward the goal of reducing risk-associated behavior among IV drug users. Tier! as it has been to policy needs, research on drug use in the past suffered the vicissitudes of shifting policies and resource availability. For example, the CTient-Oriented Data Acquisition Pro- cess (CODAP)8 collected demographic data and cirug-use histories on all individuals entering federally and state-funded drug treatment programs. In the early 1980s, however, what had previously been direct federal support for this and other drug-related programs was superseded by a block grant program that shifted control from fed- eral agencies to the states. When the total funds allocated to these efforts were cut, many states, exercising their discretionary powers over the (resign and management of (1rug programs, unfortunately chose not to continue collecting CODAP data. Still, significant research has been conducted and data of vari- able quality have been collected, but topics remain that are either underexplored or that have not been investigated at all. Most studies on IV drug use have investigated the injection of heroin; much less is known about the injection of cocaine or other drugs. In addition, methodological limitations persist. The methodological problems are as diverse as the population to which drug researchers wish to apply 7It should be pointed out that survey data do not support the hypothesis that race, sex, or age explain heroin use in cities (Greenberg and Roberson, 1978~. 8CODAP was supported by NIDA from 1973 to 1981 to collect basic drug-related in- formation on clients of treatment programs receiving federal or state funds. These data included information on prior treatment and the use of primary, secondary, and tertiary drugs of abuse, as well as client demographic data. CODAP also created a census of drug users in publicly funded treatment programs and provided useful indicators of trends in demographic characteristics of drug users. However, CODAP data were not sufficiently detailed to be of use to researchers or clinicians (NIDA, 1981~.

AIDS AND IV DRUG USE ~ 217 methodologies. Drug users do not necessarily cooperate as research subjects by restricting their behavior to forms that can be studier! using simple questionnaires. For example, single-substance drug use lends itself relatively easily to research design; the polydrug use that a significant portion of {V drug users actually report is much more clifficult to measure (B. D. Johnson et al., 1985~. To investigate these topics properly, old methodologies must be improved and new ones devised. The next section discusses some of the challenges inherent in these tasks. Investigating Risk-Associated Drug Behaviors Researchers use two basic methods to understand the nature of drug use and the extent of consumption patterns: (1) statistical surveys of definecl populations and (2) ethnographic studies. Each approach fo- cuses on quite different populations (the overlap of which is unknown) and uses very different methodologies. Analyses of the drug-using population also rely on self-reported data and on indirect indicator data, which are provided by institutional sources (e.g., treatment programs, emergency rooms, medical examiners, the criminal justice system). Some of the ways in which these approaches can be used in research on {V drug use are discussed below. Methods Data on drug-use behaviors have been derived from ethnographic studies ant! from surveys. Each method has its strengths and weak- nesses; both approaches are needed to improve understanding of the nature and scope of the cirug-use problem. Surveys, which are used in efforts to quantify cirug-relatecT behavior, tenet to be costly and are difficult to conduct among people who have good reason to hide from those who are trying to identify them. Moreover, they are limitecl to samples of particular groups (e.g., individuals living in households, arresters, or people admitted to cirug treatment pro- grams). Nevertheless, surveys are needed to ascertain the dimensions of the problem: such studies can provide critically needed and sta- tistically sound data on IV drug-using populations. Of course, data derived from surveys will have limitations (Hubbard et al., 1978~: there is a proportion of identified drug users that cannot be located for interviews; in addition, those who can be located may refuse to answer specific questions or may provide erroneous information. The nature and extent of the bias generated by such responses must be considered in interpreting survey results.

218 ~ UNDERSTANDING THE SPREAD OF HIV Ethnographic research may be the more appropriate method of obtaining critical information about such topics as the dynamics of IV drug use, including the initiation and continuation of drug- use behaviors (Waldorf, 1980~. Often, trained ethnographers are permitted access to otherwise clandestine groups and can describe variations and patterns of behavior in rich detail. They are frequently able to reach the most active drug users and dealers, those who in general are the most criminally involved and the most likely to suffer from a broacT spectrum of health problems. Moreover, unlike other research strategies whose- fin~lings~often lag months and even years behind the actual events, ethnographic studies can yield timely results that may act as an early warning of emerging problems. Ethnographic field research can also help larger scale research efforts to ask relevant questions using appropriate language and to refine survey instruments and interview procedures so as to reduce recall problems and avoid misunderstanding.9 For example, "nee- dle" and "sharing" are two words that can be misunderstood by researchers and respondents alike. Because some needles separate from their syringes, it is possible to share needles without sharing syringes or to share syringes without sharing needles. If the research interview does not ask about sharing syringes as well as needles, the respondent's answer to the question may be technically accurate, but it may not be a good measure of the potential for HIV transmission. "Sharing" can also be understood clifferently by researchers and respondents. There are several ways in which IV drug users can use the same injection equipment and not think of themselves as sharing. First, a drug user may purchase or rent equipment that has already been used by another IV drug user. Because the identity of the previous user is not known, because there is money involved, and because considerable time may have elapsed between the first and second use, a drug user may not consider this type of multiple use to be sharing. If the injection equipment is new or sterilizecI, the first person using it is not at risk for HIV infection because it has not yet been shared; who goes first in the multiple use of injection equipment complicates the definition of sharing. Finally, two IV drug users, particularly if they are sexual partners or have a very close personal relationship, may consider a single needle and syringe set to be theirs together. Both may use the set without thinking of it as sharing, which for them may refer to letting someone other than one of the joint owners use the equipment. 9 See Iglehart (1985) for a discussion of the use of vernacular language among black street addicts.

AIDS AND IV DRUG USE ~ 219 As these examples show, the descriptive information that ethno- graphers gather about drug-use practices can be helpful in improving the wording of survey questions and the data they provide. Institu- tions such as drug treatment programs, emergency rooms, medical examiners, and the criminal justice system can also provide informa- tion on different segments of the user population. The major indica- tor data that are available on injectable illicit drugs primarily cover heroin use; they include the Drug Abuse Warning Network (DAWN) emergency room data,~° medical examiner autopsy reports, state treatment admission reports, and U.S. Drug Enforcement Agency price purity information.ll Each data source is an indirect indicator of heroin use prevalence. Although the indicators clearly span a range of populations, detailed information on the community or ecological characteristics of the area from which the individual or data came is rare. The other major limitation of indicator data is the unknown relationship of the data to the actual prevalence of heroin use. No single approach to or study of a limited segment of the drug user population can provide the complete, accurate information needed for useful estimates. Consequently, efforts shouIcl be made to bridge the gulfs between survey research, which is traditionally con- ducte(1 by sociologists and psychologists, and ethnographic research, which largely falls within the domain of anthropology. Moreover, steps should be taken to strengthen the links between investigators with expertise in these areas. In addition, two other issues must be considered in studying the {V drug-using population: the reliance of many studies on conve- nience samples and the use of self-reported information. Convenience Samples Many studies have obtained data on groups of heroin users that are "convenient" to stubbly. (Regrettably, there are far fewer data on in- dividuals who inject other drugs, such as amphetamines or cocaine.) One of the main sources of heroin users from which to draw research 10Established in 1973, DAWN abstracts information on drug-related medical emergen- cies from the emergency room records of nonfederal hospitals in 26 metropolitan areas. The data that are collected include demographic characteristics of patients and selected details on reportable drug-use episodes. DAWN is also used to acquire information on currently used drugs that may be creating a local epidemic or local health problems. llThe U.S. Drug Enforcement Agency began a systematic review of heroin and cocaine prices and degrees of purity in 1971. Price purity index data are presented in dollars per pure milligram of drug. The cost is a weighted average of retail purchases and seizures.

220 ~ UNDERSTANDING THE SPREAD OF HIV samples is the treatment client population (i.e., those drug users who participate in treatment programs). The most accessible members of the drug-using population, treatment clients can be divided into three groups: (1) new admissions or reacimissions, (these clients have the most recent experience in the drug "market" ant! therefore may provide the most accurate firsthand reports), (2) clients currently in treatment, and (3) former treatment clients. Research samples have been recruited from detoxification, methadone maintenance, and residential drug-free treatment programs. In the past, a type of sampling frame (from which treatment- samples have been selected) was available on a monthly basis in the lists of newly admitted clients compilecl by the states under the CODAP program (NIDA, 1981~. These lists lent themselves to randomly selected samples of treatment clients. As noted earlier, however, many states no longer collect such data, and a complete census of the treatment population is no longer available to researchers or policy makers. It is also important to recognize that, because the initial assignment of a client to a treatment program is not random, samples drawn from the treatment population may not be representative of the larger {V drug-using population or even of the population of those in treatment. Arrestees are another "convenient" population of particular in- terest because 15-50 percent can be iclentified as drug users (Ecker- man et al., 1976) and only 20-25 percent of those arrested users have ever been in treatment (Collins et al., 1988~. Nevertheless, there are significant problems in selecting a sample from this population. Some type of screening interview must be used to identify {V drug users. Without urinalysis, self-reported levels of injectable drugs may underestimate actual use in this population (Eckerman et al., 1976; Toborg and Kirby, 1984; Wish et al., 1984~. Studies of street drug users employ a somewhat different type of convenience sample in that subjects are not selected from a pro- gram mounted by an organization or agency but are recruited "off the street." It is extremely (lifficult to apply survey methods to this group; ethnographic studies, on the other hand, can reach elements of the drug-using population that are rarely captures! by other re- search strategies. Studies of this subpopulation of TV drug users are particularly important because this group includes those drug users who are the most active, the most criminally involved, the most involved in the drug-dealing network, and the most vulnerable to a broad spectrum of health problems. Although useful, studies based on convenience samples are lim- ited in their utility because their findings cannot be generalized to the

AIDS AND IV DRUG USE I 221 total population of {V drug users. To estimate accurately the preva- lence of heroin consumption at a particular time or in different types of users, a comprehensive understanding of heroin use for all types of users is necessary. Yet the {V drug-using population is heterogeneous, encompassing a variety of users who differ by age, race, sex, and so- cioeconomic status and who change their drug-use patterns over time. Clearly, relying on generalizations to describe this diverse population would not achieve the level of understanding needed to design inter- vention programs to interrupt HIV risk-associated behaviors. No one method or data source will be sufficient to tap the diversity of the {V drug-using population. A partial picture is provided by studies of particular groups drug treatment clients, criminals who use drugs, ant! users who seek help in emergency rooms or die. What must also be known are (1) the degree to which these groups overlap and (2) the extent to which other groups within the population are not cap- tured through these data sources. For example, an unknown portion of the heroin-using population will be absent from these institutional populations; on the other hand, some drug users will be part of both treatment and prison populations in a given year. Attempts are being maple to move away from exclusive reliance on convenience samples in studies of {V drug users. Several re- searchers have attempted to collect data from probability samples of the street population (Des JarIais et al., 1985; McAuTiffe et al., 1987~. An important element of being able to conduct such studies is the identification of "major copping" (i.e., active drug sales) areas and systematic mapping of drug-related activity. Once such (leter- minations have been made, enumeration and identification of actions and individuals, as well as the selection of potential informants, can be accomplished in ways that approach the rigor of a random sample survey method, which offers the possibility of results that can be more confidently generalized to a larger population. However, there may be variation by geographic area that will continue to limit the capacity to generalize these findings beyond the local population. Self-Reported Information The manner in which a sample is selected is but one of the fac- tors that affects data quality in studies of IV drug users. Another important issue is the heavy dependence in these studies on inter- views or other sources of self-reported data. Such dependence arises as a result of a number of constraints that affect the collection of data relevant to HIV transmission. For instance, the behaviors of

222 ~ UNDERSTANDING THE SPREAD OF HIV interest can be observed, but ethical limitations affect such obser- vations (and subsequent reporting), owing to the illicit nature of the behaviors involved. There are also no readily available biologi- cal markers for indirectly measuring risk-associated behaviors (e.g., needle-sharing). Urinalysis can validate self-reports of very recent use of specific drugs, but it does not provide any information on the route of administration. Interviews or questionnaires are the only feasible means to collect data for large-scare quantitative studies, although ethnographic partic~pant-observation methods can provide another type of useful data. Given the centrality of self-reported data to understanding and facilitating change in risky behavior among {V drug users, it is worthwhile to examine briefly what is known about factors that affect the vaTiclity and reliability of this form of data collection. One important factor involves the level of understanding a re- spondent brings to the interview or questionnaire. Many {V drug users are not well educated; some are functionally illiterate. In ad- dition, for many, English is not their first language (Ffieclman et al., 1986~.~2 Thus, using questionnaires that are self-administered, that have complex structures or wording, or that are available only in English can hardly serve a study of this population well. Moreover, because respondents may be considerably embarrassed to admit that they cannot read or do not understand a question, researchers cannot expect them to bring these clifficulties to the attention of the person collecting the data. A standard threat to valid self-reported data is whether or not the subject is deliberately providing false information (Harrell, 1985; Rouse et al., 1985~. In a society in which {V drug use is both illegal and highly stigmatized, IV drug users will often have many practical reasons for not admitting that they use drugs. This denial may well include their unwillingness to admit that they are still injecting drugs while in treatment or after they have left treatment. Consequently, it is critical that interviewers not be perceived as people who can have an effect on drug treatment, legal proceedings, or other such interventions. Care must be taken to allow researchers to collect the i2CODAP data for 1981 indicated that 15.6 percent of the drug treatment population had a 9th grade education or less and that an additional 27.8 percent had only a 10th or 11th grade education. The large percentage of Hispanics in the IV drug-using population that seeks treatment suggests that many IV drug users may not have English as a first language. In a study of 200 New York City female addicts (Cuskey and Wathey, 1982), 52 percent were high school dropouts and 60 percent had not held a job for more than six months during the preceding year.

AIDS AND IV DRUG USE ~ 223 best possible ciata while still protecting IV drug users' privacy and maintaining the confidentiality of the information they provide. Even if a respondent is motivated to be truthful with a researcher, however, it is possible that the stigmatization and illegal nature of drug injection will bias his or her memory of drug injection behavior (MadJux and Desmond,-1975; Bale et al., 1981~. Such psychological denial has been observed with a variety of behaviors that are nega- tively valued in society. Alternatively, drug users may take pride in their ability to obtain and use illicit cirugs and may exaggerate their use of drugs to others, either consciously or through biasing effects on memory. Remembering the details of drug injection for example, what equipment was used and how many people used it over periods of days to years can be quite difficult, even if a respondent is motivated to remember the behavior in question "properly." A person who is using IV drugs heavily may be injecting heroin 3-4 times daily or cocaine 10 or more times per day. Human recall in this type of situation is often based on a mental averaging of what was done most or some of the time (Bradburn et al., 1987~. Yet, despite the potential problems in obtaining valid self-report- ed data from {V drug users, a body of findings is emerging that is con- sistent across studies. As noted earlier in this chapter, the frequency of illicit drug injection over time and the frequency of sharing drug injection equipment across friendship groups have been associated with the risk of HIV infection in a number of studies (Robertson et al., 1986; Des JarIais and Friedman, 1987b). Thus, the consistency of association among frequency of injection, use of shared injection equipment, and infection supports the perception that researchers can obtain valid sel£reported data from IV drug users with respect to illicit drug-use behaviors (MadJux and Desmond, 1975~. Toward Better Quality Data The need! for better information about IV drug users has prompted the committee to recommend that high priority be given to studies of this population. Little is known about variations in the injection patterns of adolescents, minorities, women, and other IV drug users who do not come into contact with organizations and agencies that serve the drug-using population. Studies are also needed of those IV drug users who are not being captured by current sampling strate- gies. These "invisible" drug users are apt to include individuals in the

224 ~ UNDERSTANDING THE SPREAD OF HIV mainstream of society (i.e., from upper and middle socioeconomic cIasses) who are more likely to seek treatment in private health care facilities. The status of IV drug users as members of the heroin community is often secret. These users may or may not be iclentified on the street as addicts, depending on their means of obtaining the drug and the stage of their cirug-use careers. Their drug use may be hidden even from family and friends. The committee recommends that high priority be given to studies of {V cIrug users who are not in contact with health care,. cirug-use treatment, or criminal justice systems. Reaching the relevant groups to collect data and deliver in- tervention programs and services will not be easy. The successful recruitment of {V drug users into drug treatment and intervention programs and into research protocols, and their subsequent retention in such efforts, will require careful management of those procedures and practices that could identify participants. Intravenous drug users often view the identifiers required in some research as an invasion of privacy and a means of uncovering issues and behaviors that they do not want uncovered. Yet these same identification practices can improve the quality and richness of ciata and facilitate the evaluation of programs. A careful balance must be struck between serving the need to collect useful data and respecting the sensitivities of study respondents. Also needed are methodological studies of how to obtain better self-reported information and how to determine when a particular subject is not providing valid data. It is critical to understand under what conditions {V drug users are more or less likely to disclose infor- mation and to remember past events accurately, particularly those events that may involve complex and variable patterns of behavior such as needle-sharing. Techniques that have been tried in other areas (e.g., varying the setting of the interview or asking the respon- dent to record sensitive information without being observed by the interviewer) deserve further investigation. The committee recom- mends that high priority be given to methodological studies to determine ways of improving the quality of self-reports of sexual ant} drug-use behavior. Conducting such studies, how- ever, will require a long-term commitment to research on illicit drug use; the benefits of methodological research, including a better un- derstanding of how to maximize the validity of self-reported data from persons who use illicit drugs, will be evident as the findings from such research are incorporated into future studies.

AIDS AND IV DRUG USE ~ 225 Sampling IV drug users is difficult, both theoretically and opera- tionally. Typical statistical sampling procedures may not yield useful estimates, and even procedures that have been designed to sample rare and elusive populations (Superman et al., 1988) are problematic. Using such techniques as geographically clustered samples and net- work samples can help inform the estimation process. Regardless of the method or combination of methods used, the estimation process will continue to rest more on judgment than on formal statistical · r. nterence. MEASURING THE SCOPE OF THE PROBLEM Prevalence of IV Drug Use Estimates of the number of IV drug users and the rates of sero- prevaTence among them are an essential feature of overall attempts to gauge the spread of AIDS, to target intervention programs, and to plan for the health care resources that are likely to be needed in the future. Inaccurate estimates of the nature and scope of the IV drug-use problem may hin(ler the formulation of appropriately targeted AIDS prevention policies. Moreover, inadequate data can stymie efforts to refine understanding of the relative degree of peril associated with the behaviors that are known to transmit HIV. Currently, the accurate estimation of the prevalence of IV drug use is hinclerec3 by (1) the lack of a sound conceptual mode] of the dynamic nature of {V drug use, (2) the lack of appropriate statistical models, and (3) the limitations of existing data and data collection systems. Any attempt to improve the estimation process will require major efforts in each of these areas. Without such efforts, the basic assumptions underlying HIV seroprevaTence estimates and other rates that require a sound denominator will continue to be questioned. Estimates of the total number of IV drug users were published in the November 1987 report prepared by the Public Health Ser- vice for the White House Domestic Policy Council and in a spe- cial supplement to CDC's Morbidity and Mortality Weekly Report (CDC, 1987a,b). One of the background papers commissioned by the committee (see Spencer, in this volume) contains a critique of the estimates generated in that report to illustrate the lack of data and models for assessing the extent of {V drug use in the United States. The Reconstruction of current estimates (i.e., breaking flown the totals into the components on which they are based) indicates

226 ~ UNDERSTANDING THE SPREAD OF HIV that these estimates may be subject to substantial error. One pos- sible source of error is the lack of agreement among those providing data on who should be counted in the ranks of the {V drug-using population. Definition of an IV Drug User , . . . A basic problem in constructing estimates of drug use is the diffi- culty of defining the term TV drug user. The types and combination of drugs injected and the frequency of needle use vary consider- ably among users, as do individual drug-use "careers." Hard-core or addicted users may inject many times daily; other IV drug users may inject less frequently and may never become addicted (Ger- lo. . stein, 19~; ;&lnberg, 1984; Hanson et al., 1985). Indeed, during their drug-use careers, individuals may move through phases of regular and intermittent use (Simpson et al., 1986~. However, all phases that involve needIe-sharing carry some level of risk (albeit a variable one) of contracting HIV infection. Furthermore, those ex-users who are now asymptomatic may already be infected from prior needle- sharing. When using multiple data sources to estimate the total number of {V drug users, it is important to keep the drug user definition constant across all sources. The level of precision of this definition for any given study will depend on the studies purpose. To study one transmission ot niv Infection, tor example, researchers will need to estimate seroprevalence for {V drug users classified by frequency of injection, how Tong they have been injecting, whether they share needles and with whom, as well as other relevant dimensions of drug use. I 1 ~ · · ~ T +~ In its 1987 report, CDC (1987a) distinguished between two types of IV drug users: regular users, who inject at least once a week, and less frequent or occasional users, who inject less often than regular users but who have used drugs more than just once or twice. Two sets of national estimates were produced for each type of {V drug user: the original Public Health Service estimates for 1986 and revised estimates for 1987 (see Table 3-3~. To assess the accuracy of these estimates, it is necessary to know the population definitions that were used in estimating the total number of each type of {V drug user and the seroprevaTence rates. How different are the operational definitions? How accurate are the estimates for the populations as operationally defined?

AIDS AND IV DRUG USE ~ 227 TABLE 3-3 Estimated Number of IV Drug Users and Their HIV Status Type of IV Drug Use . Estimated Approximate Estimated Number Number of IV Seroprevalence of HIV-Infected Drug Users Rate (percentage) Users Original estimate (1986) Regular users 750,000 30 225,000 Occasional users 750,000 10 75,000 Total 1,500,000 300,000 Revised estimate (1987) Regular users 900,000 25 225,000 Occasional users 200,000 5 10,000 Total 1,100,000 23S, 000 SOURCE: CDC (1987a). Techniques for Estimating the Total Number of IV Drug Users In general, three kinds of techniques are used to estimate the total number of IV drug users in the United States: (1) indirect estimates, (2) informed "guesstimates," and (3) direct estimates (Butynski et al., 1987~. Indirect estimates are based on regression moclels that attempt to relate indicator data (e.g., the number of burglaries or heroin- related deaths) to the prevalence of {V drug use. Estimates of the total population are obtained by substituting observed (or predicted) values of the indicators in the regression model. Informed guesstimates are pro(luced by looking at any available indicators or other correlates of IV drug-use prevalence and making an informed guess about the number of IV cirug users. The accuracy of indirect estimation or informed "guesstimation" can be no greater than the accuracy of the direct estimates on which they depend. Direct estimates are based on surveys (e.g., the National House- hold Survey on Drug Abuse, conducted by NIDA), on back-extrapo- lation methocls, or on dual-systems estimates. The National Household Survey attempts to measure the preva- lence of drug use in the general population (age 12 and older) through a household survey (see Miller et al., 1983~. While this is a reason- able way to understand the scope of the problem, the method has its limitations. The sampling frame excludes persons living in tran- sient households or in institutions (e.g., university dormitories and prisons), persons in the military, and persons with no fixed residence.

228 ~ UNDERSTANDING THE SPREAD OF HIV In addition to sampling limitations, there are problems with nonre- spondents and those who underreport drug use. The extent of bias in the survey results is unknown, but it is potentially large. Back-extrapolation methods have used AIDS mortality and HIV seroprevaTence data to estimate the number of IV drug users. The total number of IV drug users is a function of the estimated number of AIDS cases among {V drug users divi(lecl by the probability that an {V drug user will have had AIDS. This method carries difficulties in determining both the numerator and the denominator. For exam- ple, the numerator must be corrected for underreporting,~3 and the denominator must take into account the uncertainties concerning the probability of progressing from HIV infection to AIDS. Dual-systems estimates, also known as capture-recapture or tag- recapture estimates, are perhaps the most widely used method for making direct estimates. The capture-recapture method assumes that only a small fraction of the addict population would ever be reported to authorities. Two independent lists of IV drug users are generated for example, a list of persons in heroin treatment programs and a list of persons treated in emergency rooms for adverse reactions to heroin use. If a treatment sample is identified (tagged) and the tagged in~livil(luals subsequently turn up in a second sample (for example, among emergency room admissions related to drug use), the proportion of tagged to untagged individuals in the second sample allows an estimate to be made for the larger population. The total number of {V drug users is a function of the size of each list and the number of "matches" or names found on both lists. Some of the problems known to occur with dual-systems estimates include errors in the construction of the lists, variability in the selection probabilities for different types of individuals (some IV drug users are more likely than others to appear on a list, and those in treatment may be less likely to be treater! in emergency rooms), and missed matches owing to the use of assumed names. National Aggregates of State Estimates The second set of CDC estimates of the total number of TV drug users in the United States (CDC, 1987a) indicates that more than 1 million people inject illicit drugs. National estimates of this kind i3A recent study of the outcome of HIV infection among IV drug users in New York City found that, of 31 deaths, 6 were attributable to infectious agents that are not categorized as opportunistic agents associated with an AIDS diagnosis (Des Jarlais et al., 1988b). These deaths were associated with pneumonia not caused by Pneumocpstis carinii, with endocarditis, and with tuberculosis. (See also Des Jarlais and colleagues t1988a], as discussed in Chapter 1, footnote 2.)

AIDS AND IV DRUG USE ~ 229 are cleveloped by aggregating estimates of the number of IV drug users in each state. Two organizations that have combined state data to produce such estimates are the National Association of State Alcohol and Drug Abuse Directors, Inc. (NASADAD), and NIDA. NASADAD asked each state alcohol and drug agency to provide estimates of the total number of IV drug users in their state for fiscal year 1986, as well as the methods used to arrive at that estimate. Of the 17 states that reported; ciata, the highest estimate was provided by New York, followed by California and Texas. Ten states reported that their estimates were based on indirect measures or indicators. Three states reported that only guesstimates were used; four states indicated they used a combination of methods. The total number of IV drug users reported for the 17 states was 1,067,000. AdcTing the state-plan estimates for the other 33 states, Puerto Rico, ant! the District of Columbia produces an estimated total of 1,447,000 {V drug users. NIDA's national estimate of 1.1 million {V drug users in the United Statesi4 is basest on the following: 500,000 Estimated heroin addicts in 1982 +250,000 IV heroin users who are not addicted +475,000 Heavy users of cocaine with a previous history of {V drug use -150,000 Overlap in cocaine/heroin use +25qOOO {V drug users who clo not inject heroin or cocaine 1,100,000 Total estimate of IV drug users In reporting its estimates, NIDA verifies that the numbers were re- ported correctly, but it does not assess the accuracy of the estimates. The national estimates describe here can be no better than the individual state estimates on which they are based, and those esti- mates are subject to variation from forces other than statistical or methodological limitations. Political motivations may also color the numbers: the desire to obtain funds might cause higher estimates; the desire to show success in the war against cirugs might produce Tower estimates. 500,000 +250,000 +475.000 i4Spencer (in this volume) presents a detailed discussion of these estimates. Sources cited for these estimates are (a) Estimated heroin addicts in 1982: Shreckengost (1983~; (b) IV heroin users who are not addicted: NIDA estimate from analysis of unpublished data; (c) Overlap in cocaine/heroin use: NIDA, "Demographic Characteristics and Pat- terns of Drug Use of Clients Admitted to Drug Abuse Treatment Programs in Selected States: Annual Data 1985," analysis of unpublished data; (d) Heavy users of cocaine with a previous history of IV drug use and IV drug users who do not inject heroin or cocaine: NIDA, "National Household Survey on Drug Abuse: Main Findings 1985," analysis of unpublished data.

230 ~ UNDERSTANDING THE SPREAD OF HIV The accuracy of the estimates of the number of IV drug users is not objectively ascertainable; nevertheless, based on a review of the estimation methods (see Spencer, in this volume), it is not unreason- able to believe that the error could be on the order of 100 percent. That is to say, the true number of {V drug users could be as few as half a million or as great as 2 million. Consumption and Turnover Rates Among I V Drug Users A comprehensive, accurate assessment of the prevalence of IV drug use is largely dependent on an adequate un(lerstan(3ing of the (level- opment, maintenance, and cessation of heroin consumption patterns, the diversity of drug-related behaviors, and the movement in and out of the {V drug-using population (turnover). Such understancling is not easy to achieve, however. The use of multiple drugs and increased cocaine consumption have made the description of drug-use patterns quite clifficult (Fishburne et al., 1980; Johnston et al., 1981; Bray et al., 1982; B. D. Johnson and Goldstein, 1984~. Patterns of illicit drug use in general, and heroin use in particular, have changed markedly over the past (decade (Bray et al., 1982; Hubbard et al., 1985b). Il- licit drugs and their markets also vary from city to city (Person et al., 1976; SchIenger and Greenberg, 1978) and from neighborhood to neighborhood (Greenberg and Roberson, 1978~. In addition, differ- ent ethnic groups have very different patterns of use (Austin et al., 1977; Hubbard et al., 1983) and obtain drugs from different sources. Much of what is known about {V (lrug use comes from studies of heroin use. That literature in turn focuses far more on the main- tenance of usage patterns than on turnover, an important factor in gauging both the prevalence of IV drug use at specific points in tim and the likelihood of exposure to HIV. Treatment populations provide the major source of (lata on heroin consumption. However, because the patterns of drug use prior to treatment may differ from patterns seen during other phases of the drug career, using these populations as the major source of data may give a somewhat distorted picture of heroin use. For exam- pie, data from the Treatment Outcome Prospective Study (TOPS)~5 indicated that heroin use was common among clients entering all 15ToPS is a long-term longitudinal study of drug users who receive treatment from publicly funded programs. Begun in 1979 and supported by NIDA, the study seeks to understand the natural history of drug users before, during, and after treatment. More than 11,000 subjects who entered treatment between 1979 and 1981 were interviewed at the point of intake into the treatment system; a subset of 4,600 has been followed after discharge from treatment through 1986.

AIDS AND IV DRUG USE ~ 231 treatment modalities: 85 percent of the detoxification clients, 93 percent of the methadone outpatients, 55 percent of the residen- tial clients, ant! 31 percent of the outpatient drug-free clients had a history of daily heroin use (Hubbard et al., 1986~. Yet a large propor- tion of the clients entering TOPS programs was aIreacly in treatment during the year prior to entry, and many were incarcerated. A composite measure or index that fully describes the risk as- sociated with {V drug use must include some information on past use. Hubbard and colleagues (1985b) developed an index that com- bined information on current and former use of heroin. Former daily users were separated from those who used heroin weekly or daily for a limited, recent time period. Recent users were also divided into those who used heroin as their principal illicit drug and those who frequently used other opioicis as well. Heroin and other narcotics users report the most complex pat- terns of use during the year prior to treatment. Weekly or daily use of other drugs is commonly reported, including other narcotics, tranquilizers, barbiturates or sedatives, cocaine, and amphetamines. These complex patterns suggest that users may slider greatly in the course of the clevelopment of addiction and the movement into and out of heroin use. Some may be more likely to substitute other drugs for heroin, and some may be more likely to relapse after treatment. Improver! prevalence estimates require open-systems models that can accommodate substantial movements into and out of the IV drug- using population. To refine modeling efforts, detailed! information is needed on the complex dynamics of patterns of drug use. Modeling the IV Drug- Using Population: Constraints and Limitations There are a number of models to predict drug-use prevalence and drug consumption that attempt to reflect the complex dynamics of drug use. These models are based on sound statistical principles; yet because they require extensive and often elaborate assumptions, for which, unfortunately, there are generally limited supporting data, they do not always produce accurate estimates that can be used with confidence. Valid assumptions and accurate data are crucial to a model's ability to predict future trends. In a study to determine the effects of differing levels of accuracy of key assumptions, Glenn and Hartwell (1975) reviewed various applications of two approaches to estimat- ing drug-use prevalence: the capture-recapture method and direct

232 ~ UNDERSTANDING THE SPREAD OF HIV estimation. In a comparison of Greenwood's (1970) use of U.S. Drug Enforcement Agency records with Andima and coworkers' (1973) use of the New York City narcotics register, Glenn and Hartwell noted that very different estimates were developed. Their conclusion was that, although both methods were theoretically sound, the data bases and key assumptions of the approaches were subject to substantial error. Recent advances in methodology (Woodward ant! BentIer, 1978; Doscher and Woodward, 1983) and the availability of ciata from the CODAP system have allowed estimates to be made with a greater degree of precision (Woodward et- al., 1984~. Even now, however, the confidence intervals for these estimates are quite large. Efforts are under way to test model assumptions concerning the dynamics of drug use and to generate better data for more accurate predictions. For example, analysis of the drug treatment careers of TOPS clients and the estimation of transitional functions of treat- ment entry and reentry using events-based analysis have provided data to increase the validity of a number of the techniques (Hub- barc! et al., 1985a). Direct estimation techniques have been used with the NIDA National Household Survey data (Miller et al., 1983), drug treatment population demographic data, and hepatitis reports (Minichiello, 1974~. These approaches are limited, however, by the rarity of some types of behavior and the scant research on such transitional functions as episodic drug use ant! return to treatment. Although a number of studies have focused on the characteristics of drug users, few have examined the characteristics of the community environment. Clearly, any study of the drug consumption patterns of individual users should also include information on the community context, preferably at the census tract level. Some attempts have been made to combine data on community and individual character- istics. For example, SchIenger and Greenberg (1978) investigated the correlation of the Heroin Problem Index (HPl) with characteristics of the DAWN (Drug Abuse Warning Network) standard metropolitan statistical areas (SMSAs) available from the 1970 census. A similar study conducted for the U.S. Drug Enforcement Agency (Greenberg and Roberson, 1978) included an analysis of characteristics at the census tract and SMSA levels in five cities. Longitudinal studies that will measure changes in local environments are also needecI. 16Schlenger and Greenberg (1978) found that cities with high levels of heroin use did not differ from cities with low levels of use on such variables as racial composition, proportion of young men, violent crime rate, median income, and proportion of households headed by a woman. Greenberg and Roberson's (1978) study found no support for the notion that the composition of race, sex, and age in cities and neighborhoods is correlated with heroin use.

AIDS AND IV DRUG USE ~ 233 In the past, modeling techniques have been applied to a number of different drug problems, for reasons ranging from the need for greater understanding of the dynamics of drug demand and supply to assessing the impact of alternative policies for clearing with drug use at the community level. Several models based on systems dynamics have been developed in the drug-use area (O'Brien, 1973; Levin et al., 1975~. Yet each of the available models is limited by some key problems in the underlying assumption or assumptions. The capture- recapture mode] depends on the questionable assumptions that the population is stable, that each capture is an independent event and is not clependent on previous capture, and that a complete capture history is available. For the systems dynamics models, the choice of variables limits the utility of any model. For example, market models tend to exclude social and psychological factors, a gap that results in the inability of the model to explain changes in consumption levels caused by the voluntary cessation of use by individual users. In general, synthetic estimation models rely on indirect estimates of the prevalence of heroin use, which are drawn from indicators of representative geographical areas; the data are then weighted for national estimates. Within this two-stage estimation procedure, the assumptions that are made greatly influence the final results and warrant close scrutiny. Such assumptions include the following: (1) linear relationships exist between indicators and prevalence; (2) confirmed, reliable estimates are available in at least one community; and (3) areas for which data are available are representative of the national population. As is the case with most mathematical models, models of heroin consumption could benefit from further elaboration and the use of other mechanisms to improve their predictive powers. There are several strategies for proceeding. For example, existing models could be tested with new data or new assumptions concerning the dynamics of drug use. Alternatively, new models could be constructed. Also necessary to continued model development and improvement are the enhanced coordination of data collection for indicator data, surveys of key populations, and systematic ethnographic studies. The committee recognizes the problems inherent in collecting data on IV drug users for modeling efforts. It is difficult to study illicit behavior and to count those who wish to etude the attention of representatives of authority. Nevertheless, such studies must be undertaken; vague estimates and trends in IV drug use will no longer suffice. The committee finds the current estimates of the prevalence of IV drug use to be seriously flawed. Coping with the AIDS epi-

234 ~ UNDERSTANDING THE SPREAD OF HIV demic requires more precise estimates of the total number of {V drug users at a particular point in time, as well as estimates of the number of individuals moving into and out of IV cirug use in this country. To construct such estimates, more information is required about the turnover in this population and how to measure it. It is also crucial to overcome shortcomings in the conceptualization of models and of {V drug use, as well as the limitations posed by existing data and data collection systems. The committee is particularly troubled by the destruction of important data archives as a result of a lack of continuous supporti7 and finds such short-sighted planning regret- table. It also deems it especially important to improve the knowledge that is derived from convenience samples: more needs to be known about the direction and extent of bias in such samples. Improving the quality of data will require basic methodological research that has not been supported in the past. Prevalence of AIDS and HIV Infection Among IV Drug Users Approximately one quarter of all AIDS cases cliagnosed in this coun- try among adults and adolescents is related to {V drug use (Schuster, 1988~. However, because of the very strict definition of AIDS that has been established for surveillance purposes, it is thought that the number of reported cases underestimates the size of the problem. A review of death certificates in 1985 found reporting to be 90 percent complete. Still, Hardy and coworkers (1987) have suggested that an additional 13 percent of deaths among {V drug users were related to HIV but clid not meet the CDC criteria for AIDS. The number of non-AIDS deaths among IV (lrug users in New York City increased from 257 in 1978 to 1,607 in 1985 (Des JarIais et al., l98Sb). This in- crease is presumed to reflect fatal consequences of HIV infection that did not meet the CDC surveillance definition for AIDS, inclucling infections from nonopportunistic pathogens (see Table 3-4~. Other factors, such as better record-keeping or better surveillance, can also result in increases in the number of reported deaths; however, one study of narcotic-relatec3 deaths in New York (Stoneburner et al., 1988) ruled out improved recognition and reporting in explaining increased mortality. 17Lack of funding forced the closure of a data archive that was a valuable repository of data sets from previous research on drug use. This archive, which was funded by NIDA, was located at Texas Christian University from November 1973 until December 1981.

AIDS AND TV DRUG USE ~ 235 TABLE 3-4 Selected Causes of Non-AIDS Deaths Among New York City IV Drug Users in 1981 and 1985 Cause 1981 1985 Pneumonia (not Pneumocpst?s carinii) Tuberculosis Endocarditis 193 3 35 64 SOURCE: Des Jarlais et al. (1988a). Unfortunately, less is known about the rates of HIV infection among IV drug users than is known about the prevalence of AIDS. Much of the data on HTV infection in this group has been col- lected from small samples of convenience recruited from methadone maintenance programs, drug-free treatment programs, detoxification programs, prisons, and the street. With such limited data, it is not possible to know the prevalence of HIV infection among TV drug users in the United States at this time. What researchers are be- ginning to suspect, however, is that the number of AIDS cases may not accurately reflect the disease burden of this population. What is known is that there is great variability in rates of infection across the country (Table 3-5~. Geographic variation in the number of AIDS cases indicates that there are still important opportunities to prevent the further spread! of the disease. The following paragraphs discuss what is known about HIV infection and describe the patterns that have been seen to date. Reviews of HIV seroprevaTence studies of IV drug users show persistent associations of seroprevaTence rates with geography and ethnicity (CDC, 1987a; Des JarIais and FYiedman, 1987b; Curran, 1988; Hahn et al., 1988~. In the United States, there are wide variations in HIV seroprevaTence by region of the country. As shown in Table 3-6, for individuals reporting IV drug use, the rates of HIV infection are highest in the New York City area (typically, 50 percent or higher); intermediate (15-35 percent) in other urban areas (e.g., Baltimore, Hartford, and San Fiancisco); and very Tow (5 percent or lower) in some western cities (e.g., Los Angeles). Several factors contribute to the geographic variability of HTV seroprevaTence rates among IV drug users in the United States. First, most {V drug users do not appear to travel extensively. In addition to limitecl economic resources, the need for a constant supply of cirugs probably recluces their mobility, although they appear to travel some,

236 ~ UNDERSTANDING THE SPREAD OF HIV TABLE 3-5 Percentage of All Reported AIDS Cases Among IV Drug Users in the United States Total Percentage of AIDS AIDS Cases Among IV State/District Casesa Drug Usersb New York 12,103 32.7 California 9,981 2.5 Florida 3,169 15.1 Texas 2,919 3.0 New Jersey 2,555 47.7 Illinois 1,176 6.0 Pennsylvania 1,084 9.9 Georgia 957 7.6 Massachusetts 915 13.7 Washington, D.C. 885 6.8 United States 44,129 16.6 a The total includes cases reported through October 31, 1987. bIV drug users include only heterosexual men and women with a his- tory of IV drug use. SOURCE: Allen and Curran (1988). especially to locations where friends can help them obtain cirugs. Other IV drug users- for example, prostitutes or those who sell drugs may be induced to travel by their ability to earn money in new cities. Data on the life-styles of IV drug users include little information on physical mobility. Clearly, additional research in this area will be needled to target prevention strategies and to model the future course of the AIDS epidemic. The second factor influencing the great geographic variation in HIV seroprevaTence is the potential for the rapid transmission of in- fection within a particular locale. As is seen with other infectious diseases, a sel£sustaining epidemic occurs when one infected indi- vidual produces new infection in more than one other person (see Chapter 1~. Using blood samples collected and stored from previous investigations, researchers have reporter! increases (from approxi- mately 10-50 percent or greater) in seroprevaTence over a period of 3-4 years in New York (D. M. Novick et al., 1986; L. F. Novick et al., 1988~; Edinburgh, Scotland (Robertson et al., 1986~; and Milan, Italy (Angarano et al., 1985; Moss, 1987~. The committee wishes to point out, however, that these rapid increases occurrent prior to widespread awareness of AIDS. Given current knowledge of HIV transmission and of behavioral change associated with prevention

AIDS AND IV DRUG USE ~ 237 activities, the rapist spread of HIV infection among TV drug users should not be seen as inevitable. Geographic variation in rates of infection may also reflect the disproportionate burden of disease borne by racial and ethnic mi- nority groups. Chaisson and coworkers (1987b) found HIV infection among IV drug users in San Francisco to be significantly more preva- lent among blacks and Hispanics than among whites. Weiss and colleagues (1985) reported similar findings in New Jersey. As of November 14, 198S, of all reported AIDS cases, 26 percent were diagnosed among blacks and 15 percent were diagnosed among His- panics (CDC, 1988~. Of the cases attributed to TV drug use, blacks accounted for 50 percent and Hispanics accounted for 30 percent. Although consistently higher seroprevalence rates have been found among minority {V drug users, more complete interpretations of the data raise questions about factors that may differentially pre- dispose minorities to HIV infection. In some studies (e.g., Marmor et al., 1987b), racial and ethnic differences do not retain statistical sig- nificance after controlling for drug use and needle-sharing. However, in the study of {V drug users from San Francisco, both blacks and Latinos were found to have a greater prevalence of HIV infection than whites, a finding that persisted after adjusting for reported needle- sharing (Chaisson et al., 1987b). The reasons for these differences are not yet understood. There may be behavioral differences in TV cirug-use and needle-sharing behaviors across ethnic groups that are actually more accurately measured by questions on ethnicity than by questions on the behaviors themselves. Clearly, the amount of error in measuring ethnicity is likely to be much less than the error in mea- suring complex behavior over long periods of time. In other studies (e.g., Schoenbaum et al., 1986), racial and ethnic differences may be due to the recruitment of subjects from different areas within a sin- gle city, thus reflecting residential segregation and perhaps multiple epidemics of HIV within one city. The frequency of ethnic differences in seroprevaTence rates clearly indicates a need for adclitional research to explain these differences and the careful development of prevention strategies to recluce the chances of becoming infected, as well as the stigmatization and scape- goating of subpopulations. The committee recommends that high priority be given to research on the estimation of the current number of {V drug users in the Uniter! States and 18These data exclude individuals who report both IV drug use and homosexual behavior.

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240 ~ UNDERSTANDING THE SPREAD OF HIV of seroprevalence rates among cli~erent groups of IV drug users. CONCLUSION Having reviewed a number of the obstacles to behavioral research, disease prevention, and health promotion efforts for {V drug users, the reader may be left with the perception that these are monumental roadblocks to unclerstancTing and intervening in the behaviors asso- ciatec! with HIV transmission in this group. While the committee does not wish to deny the existing impediments to an understanding of the problem, it finds that the formidable challenges described in this chapter are not insurmountable. Changes in risk-associated be- havior have aIreacly been reported by {V drug users. An awareness of the risks of HIV infection and a willingness to change behavior in the face of those risks are great among both infected and uninfected individuals. Now, innovative approaches and carefully planned variations of intervention strategies, accompanied by sound evaluation, are the order of the clay. Despite major gaps in current knowledge and understanding of drug use and the limitations imposed by imper- fect methods for gathering (lata, the committee finds that consi~ler- able valuable information has already been acquired. Moreover, the knowledge base needed to design, implement, and evaluate measures to change high-risk behavior in IV drug users continues to grow. Opportunities remain to halt the spread of HIV infection among IV drug users. There are data that describe the IV cirug-using population as consiclerably smaller than the population of gay men at risk. The population of IV cirug users that has already been infected with HIV is still concentrated in relatively few urban areas, such as New York City and northern New Jersey. Enough data are now available to formulate rational plans for preventive action. Combining the results of research and improved understanding with the principles of intervention and evaluation presented in the next part of this report can bring the progress we seek in interrupting the spread of HIV among {V drug users and other at-risk groups. BIBLIOGRAPHY Abdul-Quader, A. S., Friedman, S. R., Des Jarlais, D. C., Marmor, M. M., Maslansky, R., and Bartelme, S. (1987) Methadone maintenance and behavior by intravenous drug users that can transmit HIV. Contemporary Drug Problems 14:425-434. Adler, P. A. (1985) Wheeling and Dealing. New York: Columbia University Press.

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The AIDS virus is spread by human behaviors enacted in a variety of social situations. In order to prevent further infection, we need to know more about these behaviors. This volume explores what is known about the number of people infected, risk-associated behaviors, facilitation of behavioral change, and barriers to more effective prevention efforts.

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