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Communities in Conflict The Struggle for AIDS Prevention. by Susan Shaw & Merrill Singer Hispanic Health Council While needle exchange has been internationally promoted as an effective means of reducing HIV risk among injection drug users, it remains one of the most controversial HIV prevention measures available (McCoy et al. 1997, Singer 1994, Broadhead et al. 1999). Needle exchange is the provision of sterile syringes in exchange for used syringes collected by injection drug users. This paper uses the debate over needle exchange in Springfield, Massachusetts, as a case study of the dynamics of community opposition to needle exchange programs and the role anthropologists can play in shaping and contributing to that debate. If one of our goals as researchers is the direct translation of research to policy questions, then it is incumbent on us to participate in those forums in which policy is being debated and to contribute our data to public understandings of the costs and benefits of HIV prevention programs such as needle exchange. We further argue that anthropologists are especially well-equipped to understand community opposition through our long-term immersion in communities, ethnographic methods and analysis. As a public health measure that addresses drug users in a nonjudgmental manner, needle exchange programs (NEPs) operate at the intersection of conflicting social and political beliefs about disease, drugs, the common good and the law. Public health researchers argue that needle exchange reduces HIV risk by increasing the number of sterile syringes that circulate in a given environment and decreasing the number and length of circulation of potentially infected syringes (Kaplan and Heimer 1994). Advocates who take a harm reduction approach also argue that needle exchange programs help keep injection drug users (IDUs) healthy by reducing the harm involved in drug use: e.g., by providing clean syringes, NEPs reduce the risk that drug users will be infected with HIV. By providing information and referrals to drug treatment programs, NEPs help link users with treatment. By providing ancillary health services (women's health, nutrition programs, food pantries, clothing, condoms) NEPS help improve IDUs' health status. Opponents, on the other hand, have numerous grounds for their objections to such programs. Law enforcement and some community members argue the needle exchange flies in the face of "just say no" or abstinence-based drug education. Neighborhood residents in Springfield and several other western Massachusetts cities prefer to ignore the presence of injection drug users in "their" communities by arguing that needle exchange programs will bring "bad elements" to town (see Broadhead et al. 1999 for a detailed account of one city's struggle over needle exchange in Connecticut). Some treatment providers and advocates agree with law enforcement that needle exchange programs work against the goals of their abstinence-based treatment programs. If researchers and advocates are going to effectively work towards implementing NEPs, it is imperative that we understand the bases for community opposition in order to address them directly. Des Jarlais (2000) has pointed out that as data on the efficacy of SEPs for HIV prevention mount, some opponents of SEP change the grounds for their opposition from scientific to moral issues. Thus while opponents initially argued that the efficacy of SEP was in doubt, or that SEP caused more drug use or crime, study after study has disproved these negative effects. Opponents to needle exchange are increasingly left with only their moral opposition to drug use to stand on, yet advocates continue to argue their case using scientific evidence of NEP efficacy. Anthropologists are particularly well equipped to address this problem by talking with key players and analyzing their arguments. The Hispanic Health Council continues to play an important role in not only scientifically identifying risk factors (at the individual, community and macro-level) for HIV, but equally important, delineating aspects of the social and political context in which the battle over NEP is being fought. This paper gives an example of the different value formations that make up community opposition to needle exchange.   The Shape of Risk Springfield, Massachusetts, was one of three cities studied by the Hispanic Health Council in collaboration with community organizations in the Syringe Access, Use and Discard study. Springfield was selected as a "control" site because unlike the two Connecticut sites in the study, Springfield has no needle exchange program (NEP). In addition, Massachusetts state law prohibits pharmacies from selling syringes without a prescription. In contrast, 13 pharmacies in our study neighborhoods in New Haven and 5 pharmacies in Hartford sold syringes over the counter at prices ranging from $1 to $6 per 10-pack. As a result of these policies, we found that IDUs in Springfield paid an average of 300% more per syringe than IDUs in Connecticut. This higher cost was associated with many more uses per syringe when comparing Springfield with Hartford and New Haven (mean=11.15 uses per syringe in Springfield, 7.71 in Hartford, 4.21 in New Haven). The U.S. Centers for Disease Control recommends that IDUs use a brand new syringe for each injection to prevent HIV. Every time an IDU uses their syringe more than once, their risk increases. Thus injection drug users in Springfield are at significantly higher risk for HIV infection than IDUs in our Connecticut sites. These differences can also be seen in Springfield's significantly higher AIDS rate compared with Hartford and New Haven. We suggest that had Springfield followed suit with New Haven and implemented an NEP 10 years ago, many of these cases could have been averted. For example, the annual rate of new AIDS cases in 2000 in New Haven was 19.6 per 100,000 population, compared to 34.5 in Springfield. In 2000 there were 71 new AIDS cases in New Haven related to injection drug use, and 152 new cases in Springfield related to injection drug use. A case of AIDS diagnosed in 2000 can assume to have been infected approximately 10 years earlier, in 1990, when New Haven began its needle exchange program. New Haven's dramatically lower HIV rate in 2000 is a result of the implementation of needle exchange and pharmacy access ten years ago. Had Springfield taken the same course of action, and achieved New Haven's lower HIV rate, we would have expected to see 88 new cases of AIDS related to injection drug use, instead of the 152 new cases diagnosed in 2000 (Heimer et al. 2002). As we did earlier in Connecticut, we have used these results to advocate for state legislation to increase access to sterile syringes in Massachusetts. HHC staff in cooperation with investigators from the University of Massachusetts made presentations at public hearings in Boston in support of bills that would decriminalize syringe possession and allow over-the-counter sale of syringes without a prescription. Another bill would allow local authorities or the state Department of Public Health to override community opposition and allow the implementation of a needle exchange if a "public health emergency" was declared. On a local level, Syringe Access researchers wrote letters to the editor in support of these bills, and presented our results at city council hearings and public forums in Springfield where needle exchange was being debated. In addition, members of the Syringe Access team have participated in the Syringe Access Working Group of the Massachusetts AIDS Policy Task Force. The Task Force is sponsored by the AIDS Action Committee in Boston, with member organizations from Springfield, Holyoke, Northampton, New Bedford, Boston, Cambridge, Lynn and elsewhere. Members share information about local conditions, and strategize on statewide legislative and legal efforts to promote or protect needle exchange programs and to decriminalize syringes. Lastly, we recently contributed our expertise to a video documentary currently being produced on the need for needle exchange in western Massachusetts, and created a link between the show's producers and several of our participants who were interested in advocating for needle exchange by describing their experiences as injection drug users in a city without a NEP or pharmacy access. The Struggle over Needle Exchange in Springfield Four cities in Massachusetts have implemented needle exchange programs: Northampton, Cambridge, Boston and Provincetown. In 1994, Massachusetts authorized 10 pilot NEPs "with local approval." However, the state declined to specify exactly what "local approval" meant. No locality that has ever held a referendum on needle exchange has voted in favor of it. The last NEP in Massachusetts was approved and implemented 6 years ago in Provincetown. In the four cities currently operating needle exchange programs, "local approval" has been understood to mean the support of key local officials, including the mayor, chief of police, and/or health commissioner. In Springfield, these three city officials did in fact support needle exchange from 1998 through 2001, along with the editor of Springfield's only daily newspaper. The mayor supported needle exchange as a means of bringing the city's HIV epidemic under control. His Health Commissioner was also a strong supporter, although she was limited by the mayor's view of what was politically feasible. The Springfield City Council did approve needle exchange once in mid-1998, but after a powerful community opposition campaign put the issue on the ballot for a public referendum, one city councilor changed his vote and the Council has stood in steadfast opposition ever since, voting down the issue at least 4 times. The mayor and his administration have been hindered from implementing a needle exchange program due to strong opposition from the City Council. Some City Councilors responded to the issue of needle exchange by towing the just-say-no-to-drugs line. "I don't think it's about money the idea that we shouldn't be using tax dollars to hand out needles," said one. "[It's] more of a moral gut check, the feeling that [drug use] is not something we should be encouraging" (Advocate 2/24/96). In turn, City Council refers to community opposition to needle exchange coming from two different quarters: the first, Citizens Against Needle Exchange (CANE), a group of mostly white and suburban voters, emerged in response to the 1998 vote. The second, an African-American community organization, opposed needle exchange because they saw it as in conflict with their drug-free counseling method. CANE members argued that needle exchange "sends the wrong message" to the city's youth, saying that "We have DARE programs to teach children not to use drugs, but now we are telling them that if you decide to shoot up we will help you" (Boston Globe op-ed, 9 Sept. 1998). In public hearings CANE members argued that needle exchange is a "giveaway of taxpayer money" and that it did not help drug addicts. They denied the existence of the health emergency described by the health department (rising rates of AIDS and HIV infection related to injection drug use) as justification for the program. They cited instead rates from 1995-1997 showing decreasing AIDS rates. CANE also argued that it was not the government's role to provide needles to injection drug users. Their views were based on a neoconservative belief in personal responsibility that motivated both their disapproval of addicts in general and the "government" provision of needles to addicts in particular. I an interview, one of CANE's organizers deplored the lack of personal responsibility throughout society: "I think nobody wants to be responsible for what they do with their life. I am certainly not one to cast stones, but you have to take responsibility for your actions. If you're going to do something that's not good to yourself, then take responsibility for it, don't put it on me, don't put it on your mother. I see that in society and to me that's a problem with society, nothing is anybody's fault anymore. And if you're on drugs you're not exactly being a real responsible person." The second group opposing needle exchange shared some reasons for their opposition with CANE. A prominent African-American community-based organization argued that any kind of government support of drug users condoned drug use. They advocated for drug-free counseling to help people stop using drugs, and against needle exchange and methadone maintenance. "My philosophy around drugs is that, one, you don't give people another drug in order to get them off of drugs," said the executive director in an interview. "I think that when you offer people things like needle exchange and methadone maintenance, that you really take away their ability to manage their own life. You're saying, 'here, you don't have to learn how to manage your life. Take this, and then you can do this for the rest of your life.'" Needle exchange advocates will argue that while needle exchange can be a bridge to treatment, needle exchange does not equal treatment, in fact it "has nothing to do with treatment," as the director quoted one such advocate. As a major substance abuse treatment provider in Springfield, she definitely felt the slight when harm reduction workers and advocates failed to consult with the substance abuse treatment community in developing their plans for needle exchange. This oversight helped to guarantee her long-standing opposition to needle exchange. Furthermore, she argues that crack was the more dangerous drug in their community, and that neglect of this issue amounted to the intentional neglect of the "true" cause of HIV in their community. Finally, they were adamant that their community be included in any understanding of "local control," that City Council did not constitute local control, for reasons discussed below.   Underrepresentation After the city council vote in favor of needle exchange in 1998, Citizens Against Needle Exchange circulated a petition to get the issue on the November ballot. They gathered the requisite number of signatures but failed to have enough certified to get a binding referendum. Through the intervention of a State Senator they were able to win mayoral approval for a nonbinding referendum in November. As a result of active grassroots organizing by CANE, needle exchange was defeated in that vote by a ratio of 60-40. In the referendum, Springfield's system of representation for its City Council also worked in favor of CANE's position. Currently, council members are elected on the basis of a citywide majority vote. Direct neighborhood representation does not exist on City Council. As a result, 8 out of 9 council members live in the predominantly white and wealthier neighborhoods on the periphery of the city, which have higher voter turnout and more registered voters than inner-city neighborhoods. Residential segregation and lower voter registration mean that predominantly black and Puerto Rican neighborhoods in the "inner city" have no direct representation on the council (i.e., no council members live in those neighborhoods). The Campaign for Fair Politics, a coalition of community-based organizations, wants to elect city council members from the 9 wards used to elect state representatives, districts that approximately correspond with commonly agreed-on neighborhood boundaries. This system would guarantee more equitable representation of the entire city. Springfield's system of representation on its City Council directly affects decisions about needle exchange. One Springfield survey found that "the wards most directly and urgently affected by drug addiction and HIV/AIDS are at a disadvantage in terms of [local] representation." Inner-city neighborhoods in which most people support needle exchange (61% and 64% in favor in two predominantly African-American neighborhoods) tend to have fewer registered voters than more predominantly white neighborhoods which oppose needle exchange in higher numbers (42-45% in favor) (Market Street Research 2001). More people support needle exchange in the wards with the highest number of African-American voters, and among African-American respondents citywide. When the Mayor persisted in pursuing needle exchange after the referendum, since it was a nonbinding vote and he had City Council approval, CANE's activism became more personally directed at the Mayor as they launched a populist-style recall campaign. "The arrogance of our elected representatives is now abundantly clear, and if we ever want to take our city back, this recall [campaign against the mayor] is imperative," stated CANE organizer Karen Powell. She cast her group and their struggle as the "little people" against "the health department, the newspaper publisher, and large sums of money." Understanding and addressing the populist orientation of a group such as CANE is critical to building bridges and working relationships that can eventually lead to if not support, at least lessened opposition to needle exchange programs. Several years ago, the Campaign for Fair Politics also tried to gather enough signatures for a citywide referendum on the issue of ward representation. However, when they failed to gather enough signatures for a referendum on the ward representation issue, political commentators noted that, unlike CANE on the needle exchange issue, they received no conciliatory offers of nonbinding referendum from the Mayor or City Council. As one African-American community activist observed, "What are the differences between needle exchange opponents and the ward representation proponents? I say the differences are [that we are] inner-city blacks and Latinos, poor and disenfranchised" (Valley Advocate, 9/3/98, p10). This activist speaks to the structural conditions that also contribute to high HIV rates and addiction problems in minority communities. Anthropologists are also experienced at locating and identifying structural factors that affect health and illness. We are working at making interventions in political and other sphere to influence structural conditions such as access to health care or clean syringes. Even within the Syringe Access project we observed indirect forms of obstructionism at the community level. In 2001, a subcontracting community agency on the Syringe Access project refused to allow the outreach worker assigned to the study to testify with us in Boston in support of expanded access legislation. A former IDU himself, the outreach worker intended to share his personal story with legislators as well as findings from the study. The executive director said that he must take his vacation time if he chose to leave work to testify. At a meeting with the Springfield site coordinator, the director professed personal support for needle exchange and expanded syringe access, but would not officially support the effort with the agency's name because he felt there was little chance of success. This kind of resistance, from even those organizations that profess support for HIV prevention measures among IDUs, has proved to be an important obstacle in the struggle for needle exchange in Springfield. Until it appears to be politically feasible to support it, even those individuals and organizations that may privately support the issue refuse to commit themselves to a public stance for fear of ostracism. Frustration with this process led at least one HHC employee to move from her research position with the study to a more explicitly activist position. Based on her expertise as the Springfield site ethnographer, she was hired as a needle exchange advocate for the city of Springfield by the agency that runs a needle exchange program in nearby Northampton. She founded the Springfield Harm Reduction Coalition, a community organization that has become a strong voice for needle exchange in Springfield. As of this writing, the Harm Reduction Coalition is preparing a new mobilization that involves the presentation of our findings to City Council in an effort to win the support of newly-elected councilors. In sum, community opposition to needle exchange programs is very active throughout Massachusetts as well as the U.S. Since opposition to needle exchange programs is often based on differing values rather than the absence of scientific facts, it is important for researchers and advocates alike to engage with the various stakeholders around issues of both fact and value. Only by building bridges between groups and individuals who support and oppose needle exchange can the current stalemate be broken in cities like Springfield. Anthropologists contribute to the dialogue their in-depth research findings on risk and behavior among specific populations, as well as their expertise in relating to individuals and groups across differences. References: Broadhead R., van Hulst Y. and Heckathorn D. 1999 Termination of an Established Needle-Exchange: A Study of Claims and their Impact. Social Problems 46(1):48-66. Heimer R., Buchanan D., Teng W., Shaw S., Khoshnood K., Stopka T., Singer M. 2002 Syringe Access, HIV Risk, and AIDS: The health implications of public policy in two New England states. Manuscript under review at The Lancet. McCoy C., Metsch L., Page J., McBride, D. and Comerford S. 1997 Injection Drug Usersí Practices and Attitudes toward Intervention and Potential for Reducing the Transmission of HIV. Medical Anthropology 18:35-60. Singer M. 1994 AIDS and the Health Crisis of the Urban Poor: The Perspective of Critical Medical Anthropology. Social Science and Medicine 39(7):931-948. Kaplan E. and Heimer R. 1994a A Circulation Theory of Needle Exchange. AIDS 8(5):567-574. Market Street Research 2001 Attitudes among Registered Voters toward a Needle Exchange Program in Springfield. Report prepared for Tapestry Health Systems, Northampton, Massachusetts.