Needle exchange programs for the prevention of human immunodeficiency virus infection: epidemiology and policy (2001)

This epidemiology and policy case study is noteworthy for several reasons. First, the needs were urgent. Confronted with an epidemic of a previously unknown but highly fatal infectious disease for which there was no effective treatment at the time, epidemiologists scrambled to assemble data rapidly. Second, as strategies for prevention became evident from field studies, epidemiologists were drawn in by the policy relevance of the research. In this case, there were few organized constituencies to support needle exchange as a component within a comprehensive strategy to confront the HIV epidemic in injection drug users. After activists worked to place needle exchange on the agenda for HIV prevention, epidemiologists helped to frame the policy debate. The data provided by epidemiologists were used to shift political and popular opinion towards supporting programs that were initially unthinkable. The scientific case for needle exchange was built on a foundation of several factors: 1) careful epidemiologic investigation of the problem; 2) evaluation of feasible alternatives; 3) generation of hypotheses and studies based on the concerns of policy-makers; and 4) determination to proceed in spite of administrative bans on research and competing political orientations on the drug abuse problem. The process of needle exchange program development and expansion is due in part to epidemiologists who helped to frame a controversial topic in the scientifically grounded area of infection prevention. In this arena, epidemiologists were often drawn beyond detached observations to become advocates of a despised and disenfranchised population in order to improve the public's health. The controversial nature of needle exchange also illustrates the paradox whereby federal policy called for research but for a time imposed an administrative ban on the research. No groundswell or clamor among researchers occurred, but this was wrong in retrospect. Researchers cannot tolerate such prohibitions. As a profession, epidemiologists need to advocate for openness, even when unpopular, for scientific investigation and evaluation when the root of the issue is protection of the public's health. (Author's abstract)