Harm Reduction in the United States: Whose History? (Part 2)

Yesterday I wrote about an editorial that was rejected by an academic journal in fall 2009 that outlined the history of harm reduction in the United States. The following is that article, unedited.

Part 1 is here.

This editorial principally frames the development of harm reduction in the United States around syringe exchange. The authors recognize that harm reduction in the US is broader in philosophy, practice and application.

The Health Omnibus Program Extension Act of 1988 established support for investment in HIV prevention, testing and education through the Centers for Disease Control and contained a significant clause: "None of the funds provided under this Act or an amendment made by this Act shall be used to provide individuals with hypodermic needles or syringes so that such individuals may use illegal drugs, unless the Surgeon General of the Public Health Service determines that a demonstration syringe exchange program would be effective in reducing drug abuse and the risk that the public will become infected with the etiologic agent for acquired immune deficiency syndrome." This restriction and its concomitant political and social implications ushered in the harm reduction era in the United States. Since 1988 the federal ban on the funding of syringe exchange has been the lightning rod for both advocates and opponents of harm reduction.

The federal ban would serve to structure the political and practical agenda of harm reduction advocates for the coming two decades. Researchers were charged with demonstrating that syringe exchange reduced HIV infections and did not increase drug use. Advocates and activists endeavored to garner recognition for the empirical and scientific evidence supporting the efficacy of syringe exchange and fought for lifesaving equipment, to cultivate financial resources for programs working with drug users, and increase access to healthcare. The opposition maintained a steady stance, rooted in decades of propaganda aimed at individuals who used drugs, consistently countered evidence-based scientific claims with half-truths, and continued to stigmatize drug users.

Created and sustained by activists, many of whom had direct experience as drug users, the harm reduction movement rapidly burgeoned in the United States. It was built on client-centered services, underpinned by common sense and strengthened by scientific evidence. The movement aimed to raise the social capital of drug users, centered on the advancement of human rights and the eradication of social stigma, as well as promoted a democracy of full inclusion. The implementation of services, mostly delivered without legal sanction, produced remarkable results in reducing HIV among injectors, initiated cutting edge overdose prevention programs and developed health care programs related to hepatitis C, housing, and mental health needs. These programmatic achievements were actuated in spite of the federal government's intractable aversion to strategies to reduce drug-related harm other than abstinence-based approaches and a reliance on mass imprisonment as a way of controlling drug users and drug use.

The US harm reduction movement has produced large, credible, significant multi service agencies serving drug users. Promoting the social integration of drug users has required a longer term approach and has relied on advocacy, drug user self advocacy, social marketing, materials development, and policy change at local and regional levels - with the federal government firmly in mind for national support. The effort to lift the federal ban has been part of this effort.

According to the North American Syringe Exchange Network, as of June 2009, there are 211 syringe exchange programs operating one or more exchange localities in 34 states, the District of Columbia, the Commonwealth of Puerto Rico and the Indian Nations. The earliest effort at establishing an exchange in the US was conducted by the New York City Health Department in 1986. After racial politics stymied the development process, a compromised program was started in 1988. Simultaneously, activists across the country were successfully organizing to start exchange efforts in their communities. Jon Parker and the AIDS Brigade initiated exchanges on the East coast (Boston, New Haven, New York City) and Dave Purchase commenced an exchange program in Tacoma, Washington. Regular conventions for the nascent movement of underground exchange programs and the subsequent formation of the North American Syringe Exchange Network acted as catalysts for the rapid spread of mostly extra legal efforts to start harm reduction services. Members of the AIDS activist group, ACT-UP, initiated new programs and the movement generated support and was endorsed by researchers from NDRI in New York and the Urban Health Study in San Francisco. Through the mid 1990s exchange programs expanded rapidly both in urban and rural America. However by the latter part of the 1990s the activist expansion efforts had mostly been superceded by the systematic and slower inauguration of new programs by local health departments.

At a pace attendant to the expanding availability of exchange programs, harm reduction based social services increased in number, innovative programming was developed and implemented and the larger advocacy movement continued to swell. For example, overdose prevention and naloxone distribution programs have been established at more than 65 programs in 17 states. A low threshold educational intervention, opiate overdose prevention programs train drug users and lay people to respond to overdose situations and provide them with the tools necessary to reverse an overdose. A survey of programs, conducted in 2007, reported that approximately 20,950 individuals have been trained and 2,642 overdoses have been reversed using naloxone. Despite the remarkable results of overdose prevention programs, uptake of new programs has been slow. The success of these programs and critical need has led to a more aggressive advocacy effort targeting federal institutions to endorse the use of naloxone by drug users and to have the drug deregulated.

Drug users who 'come out' in the United States do so in the face of rampant stigmatization and with potentially deleterious impact on their persons and livelihood. Drug users have organically organized and crafted an alternative approach to user led community organizing which is distinct from user groups in Europe, Canada and Australia. Users spurred a movement through the creation of non-profit organizations and by prioritizing user self care. Underground exchange programs emerged publicly and received local and state support and financing. Users addressed health conditions such as endocarditis, abscesses, overdose, cotton fever, hydration, bleaching, hepatitis c, through the development of materials including posters, pamphlets and 'zines which were widely distributed, emulated and subsequently were incorporated into the mainstream healthcare world. Users and activists self trained to become wound care experts and treated soft tissue infections on site at harm reduction programs. Since the beginning of the harm reduction movement in the US peer based home delivery of syringes in both urban and rural situations has been a standard offering alongside storefront and street based syringe exchange. This approach has received funding in California and New York State.

In 1997, when the Democrats were in power in the White House, advocates initiated a campaign to remove the federal ban on the funding of syringe exchange. A wealth of empirical evidence existed which supported the efficacy of syringe exchange in reducing HIV transmission among injection drug users and demonstrated that it did not increase the incidence of drug use. There were well over 100 programs operating in the US and several federally funded studies existed that further substantiated the positive impact of exchange services on drug user health. Advocacy efforts waged by researchers and advocates were successful in influencing, then Director of Health and Human Services, Donna Shalala, to certify that the scientific criteria for removing the ban had been met. Despite this certification President Clinton would refuse to take the final step and remove the ban - an inaction he has since apologized for several times

The brutality, banality and the anti-science bent of the Bush administration meant that advocacy efforts waged at the federal level were muted for a number of years. When the 2006 elections restored Congressional control to the Democrats, advocates seized the opportunity to launch a more aggressive campaign to build political support for syringe exchange among elected officials in positions of influence. A ban on the use of funds for sterile syringes that affected the City of Washington, which is governed by the Federal government, was overturned in 2006. Advocates read these signs to indicate that they were in a prime position to win support among their elected officials for lifting the ban.

All three of the primary democratic Presidential candidates in the 2008 election (including President Obama) supported removal of the ban. After 21 years, it was imagined that the predominant symbol of stigma was potentially going to be eradicated and that an era of inclusion might follow. However, harm reduction has remained an intensely politicized term in Washington. While the Democrat controlled Congress and President Obama's White House support the elimination of the ban, numerous political obstacles have tempered the substantial gains made by advocates to have the ban removed.

As of October 2009, the ban is on the cusp of being removed but with the following egregious amendment: "Sec. 523. None of the funds contained in this Act may be used to distribute any needle or syringe for the hypodermic injection of any illegal drug in any location which is within 1,000 feet of a public or private day care center, elementary school, vocational school, secondary school, college, junior college, or university, or any public swimming pool, park, playground, video arcade, or youth center, or an event sponsored by any such entity." This amendment would make it logistically unfeasible to use federal funds to conduct syringe exchange services in areas of United States cities where services are most explicitly needed.

Most Democratic leaders privately support the elimination of the ban but have not acted publicly to garner support across their party. The White House website has discreetly removed references to the President's support of removing the ban and also has deferred the decision to Congress. It seems that the only consistency in politics is the inconsistency of politicians and their consistent disregard of the health of drug users and their families. 21 years later, the use of federal funds to support syringe exchange in the United States remains a seeming impossibility.

Re-posted from Daily Kos