Civil Society and the Invention of Social Policy: State, Society and Citizenship in the Fight Against AIDS

Susan M. Chambré, Professor of Sociology

Baruch College, City University of New York

17 Lexington Avenue, Box G1549

New York, New York 10010

Phone: 212-387-1704

Fax: 212-387-1708

e-mail:

To be published as part of the US Civil Society Project, funded by the Ford Foundation, directed by Virginia Hodgkinson, and located at the Center for the Study of Voluntary Organizations and Services, Georgetown Public Policy Institute, Georgetown University. This article is based on research that has been supported by the Ford Foundation, the PSC/CUNY Grants Program, the Baruch College Fund, the Weissman School of Arts and Sciences of Baruch College and the Nonprofit Sector Research Fund. Georgette Eden and Daniejela Milic provided invaluable assistance. Virginia Hodgkinson and Mark E. Warren provided cogent and invaluable recommendations on earlier drafts.

Nonprofit and voluntary organizations are fundamental in a civic culture. They promote democratic processes by generating the social capital which promotes a vital balance between civil society and the state (Almond and Verba, 1963; Lipset, 1956; Warren, 2001; Putnam, 1993). In an era where voter participation has been steadily declining, voluntary associations play a critical role by serving as schools for democracy, mobilizing citizens, creating templates for policy innovations and influencing the public agenda (Gardner, 1983; O’Connell, 1999). Small, grass-roots and community-based organizations are assumed to be especially valuable building blocks in civil society (Schambra, 1998). They are viewed as key actors in policy development because their embeddedness in communities makes them more sensitive to local needs than large nonprofits and have the ability to mobilize citizens who may have been relatively uninvolved in politics and advocacy (Portney and Berry, 1997). While there is ample evidence that there is a link between a vibrant set of communal organizations and the existence of democratic processes, there is a need for a more detailed understanding of how civic organizations support what Jane Mansbridge (1994) calls a ‘public spirit.’

This article examines the role of New York City’s AIDS community in the development of local and national HIV/AIDS policies. AIDS is an analytically useful policy domain because of the uncertain, complex and highly contested nature of the public health interventions that were needed. The two groups most affected by the disease — gay men and current or former drug injectors — differ in their access to volunteers with the time and the talent to form organizations as well as the financial ability to support them. Some organizations became highly dependent on public funds which placed enormous constraints on their ability to engage in advocacy (Chambré, 1997).

The narrative chronicles the fate of two radically different policies: increasing the pace of testing and releasing new drugs; and needle exchange where active drug injectors are provided with free hypodermic needles. The first policy area mobilized the gay community. A different constituency participated in discourse about needle exchange. The article discusses three theoretical issues: the role of community organizations in setting the public agenda; the nature of citizenship in a society where a great deal of political mobilization occurs in issue-specific advocacy; and the interrelationship between the state and civil society. The history of these two policy issues provides an opportunity to examine advocacy networks, the changing nature of citizenship in a society where organizational memberships have declined, the role of ‘rights talk’ in framing policy discourse and the very nature of civil society itself as a ‘space’ where citizens discuss issues of mutual concern and systematically articulate their positions to influence social policy.

Civil Society and Citizenship

The concept of civil society has undergone refinement and the term has been used quite differently by theorists with varied political ideologies (Warren, this volume). Influenced by Parsons, contemporary scholars conceptualize civil society as a social ‘space’ between the state and the market (Wuthnow, 1991). Some scholars note that the Western conception of civil society may require modification when examining other cultural contexts (Hann and Dunn, 1996) and may no longer apply to the US since 'associations are now thoroughly entangled with states and markets, so much so that the imagery of distinctive domains of state versus associational organizational types can be misleading' (Warren, 2001: 33).

Recent discussions of the nature of civil society in the US suggest that there have been important changes in the level and distribution of civic engagement during the past four decades. Robert Putnam (2000) concludes that there has been an overall decline in levels of social capital since Americans express less trust in other people, belong to fewer voluntary associations and spend less time in informal social interaction. This view is not without its critics. While some forms of participation might be declining, other observers note that Americans are joining other types of groups and that more Americans volunteer than in the past. Everett Carl Ladd (1999:5) reached a different conclusion than Putnam, that 'the engagement of individual citizens in a vast array of groups and voluntary service and charities is generating social capital as never before.' Theda Skocpol (1999, this volume) offers additional insights on the changing nature of social engagement. Like Putnam, she points to a decline in the number of national associations that create ‘bridging’ social capital between members of different social classes. At the same time, more political advocacy is done by organizations where membership is passive: she points out that involvement is confined to writing out a check. A logical extension of her observation is that in some instances ‘members’ are consumers of goods produced by the organization and market segments who can take advantage of discounts offered by for-profit firms.

There is yet another viewpoint: that the very nature of citizenship has changed along with shifts in political discourse. The active membership organizations that mobilized citizens in the past have been replaced by a more elusive and harder to measure kind of political engagement. Shudson (1998: 298) notes that 'civic participation now takes place everywhere. It exists in the microprocesses of social life. In the cultural shift from the informed citizen model of the Progressive era to the rights-regarding citizen of the present day, a dimension of citizenship has come to color everything.' One important innovation is contributing to this: the use of email and the internet to create ‘cyberadvocacy’ (McNutt and Boland, 1999).

Policy networks, rather than individual organizations, also play a central role in agenda setting. Neo-institutional theorists have sensitized observers to the importance of studying organizational fields composed of interconnected sets of organizations with common interests. This approach dovetails with recent work on political advocacy which documents rather clearly that policy issues are forward by coalitions rather than individual organizations (Berry, 1983).

A final change in the fabric of political life is the very nature of political discourse. Social issues are less often framed in terms of abstract moral values than in terms of ‘rights.’ The personal has become political. This is evident in the two policy issues under consideration. Both have to do with a definition of the role of the government and the society vis a vis the rights of individuals: the rights of individuals to be cured of diseases and the responsibility of a government to actively find a cure; and the right of individuals to gain possession of a material good which enables them to engage in behavior which most members of the society view as deviant in an effort to protect other citizens from the chance of being infected with a fatal disease.

Seeking a Cure: The AIDS Community and Policy Innovation

The first official reports of what was later termed ‘AIDS’ were in May 1981. Patients died quickly and faced enormous insensitivity and even outright neglect by health care and hospital personnel. A combination of altruism, disbelief and anger led the friends, lovers, and family members of the early AIDS cases to raise money and form new organizations like the Gay Men’s Health Crisis (GMHC) in New York (Chambré, 1991). By the mid-eighties, survival time increased and stakeholders began to think of themselves as being members of an ‘AIDS community’ (Chambré, 1995). Much of the early work of this community involved caring for the sick and the dying. Over time, more and more effort was directed toward advocacy as resources and political sophistication increased. New York’s AIDS community was an important part of a national network of organizations founded to ‘fight’ AIDS that shaped AIDS policies and led to a sharp rise in funding for services and research. Ronald Bayer (1991) points out that it also led to ‘AIDS exceptionalism,’ an exemption from standard public health measures like name reporting and contact tracing. AIDS mobilized the gay community tapping enormous amounts of latent social capital. In 1981, when the first AIDS cases were reported, New York City’s gay community was just beginning to be well-organized and politicized (Cuthbert, 1990) and AIDS attracted many new gay donors. Many of the social and information networks were informal but gay newspapers and magazines covered the AIDS story more extensively than the mainstream press.

Defining the Issue: The Community Research Initiative

Participants in the nascent AIDS community expected medical science to find a cure quickly. They were shocked and alarmed that this was not the case. By 1983, doctors were experimenting with a number of treatments. People with AIDS (PWAs) began to actively seek experimental and sometimes risky treatments as well as alternative and holistic approaches to health. Patients traveled abroad to countries to obtain medications that were not available in the US (Clark with Coleman, 1985). They also developed a distribution system for promising but unapproved drugs (Waldrop, 1988).

With the release of AZT, the first drug specifically approved to treat AIDS, members of the AIDS community came to believe that a cure for AIDS was in the pipeline. The idea seemed logical in light of AZT’s history since it had literally been sitting on a shelf with no clear use since the 1960’s (Rothman and Edgar, 1993). Over time, members of the AIDS community came to believe that the slowness of gaining approval from the Food and Drug Administration (FDA), a seven to ten year process, was a major obstacle to quickly finding the cure for AIDS that would prolong their own lives.

Ideas about engaging PWAs in ‘fighting’ the disease began to extend to their involvement in actively seeking a cure. Several members of a support group sponsored by GMHC became part of a national movement of PWAs who placed an enormous emphasis on personal and communal empowerment (Chambré, 1995). One member, Michael Callen, formed Gay Men with AIDS in 1982 and its successor, the PWA Coalition (PWAC) in 1985. PWAC was a self-help organization designed to empower people by providing helpful survival hints and cutting edge treatment information. Along with his doctor, Dr. Joseph Sonnabend, a medical researcher Dr. Mathilde Krim[1] and a community activist named Ron Najman, Callen extended the idea of PWA empowerment in a 1986 plan for a community-based research effort. This would be an organization that would test promising treatments, an alternative to large, University-affiliated medical center based research in which community-based physicians would collaborate with PWAs. A similar group in San Francisco involved community doctors but had less participation by PWAs (Epstein, 1996). The proposal for the New York effort projected modest startup costs, $25,000 in salaries and operating expenses for the six months plus the cost of donated office space (Sonnabend, Najmen, Callen and Krim, 1986). The organization, called the Community Research Initiative (CRI), opened its doors a year later. By the end of 1987, the organization was testing one promising medication and had had two additional studies on the drawing board. An early success with this first drug, aerosalized pentamidine, was widely publicized in a documentary film and in numerous news articles including one called 'Doctors and Patients Take AIDS Drug Into Their Own Hands,' (Kolata, 1988).

Agenda Setting: The Role of ACT UP

By the early part of 1987, there was a growing sense of anger at the government’s slow response to the disease and its failure to find a cure. This was exacerbated by the high cost of AZT and early reports of the drug’s negative side effects and limited efficacy. On March 10, 1987, a speech by playwright Larry Kramer tapped these inchoate emotions, galvanized the gay community and led to the founding of the AIDS Coalition to Unleash Power or ACT UP.

ACT UP’s first target was the drug industry. Its first demonstration focused on the high cost of AZT. Subsequent demonstrations and actions were directed toward the FDA, the airline industry, the state, city and the federal governments, and AIDS organizations themselves. The demonstrations were dramatic and campy (Gamson, 1989) but the criticism was sometimes vicious and highly personalized attacking bureaucrats and scientists alike. The group took credit for several important changes: reducing the cost of AZT, expanding access to drugs that were midway through the drug approval process and reducing the time it took to approve new drugs. Its members not only testified at various congressional and FDA hearings, they joined various government advisory panels that dealt with the allocation of resources for scientific and clinical research.

By 1990, journalists were noting the beginning of a decline in ACT UP’s membership. Government policies were becoming more responsive and funding was expanding. The disease had become a long-term chronic rather than an acute illness. But, a cure was not in the pipeline; it still to be developed in the laboratory. Treatment activists began turning their attention to the funding and operation of basic science. An idea first proposed in 1987 was revived: establishing a ‘Manhattan Project’ for AIDS. Like the invention of the atom bomb, where the high concentration of an elite group of scientists operating without bureaucratic and funding constraints led to a rapid discovery, so too could the ultimate ‘cure’ for AIDS be found more rapidly (Cohen, 1993). In 1992, ACT UP’s momentum on treatment was reduced when key leaders of the Treatment and Data Committee split to form the Treatment Action Group, a small, elite think tank whose members conducted policy research and served as representatives of the AIDS community to government and corporations. At the century’s end, treatment activists were continuing their work but the ultimate cure is in the future, not in the pipeline.

Needle Exchange: Creating a Policy for the Powerless

In contrast to advocacy directed toward finding a ‘cure’ which mostly engaged gay white men, the other large population affected by AIDS – injecting drug users or IDUs – were relatively powerless. Major solutions to a problem they faced, how to reduce HIV transmission among themselves and to their sexual partners and their children, were far more contested. The second case study examines the early history of prevention policies for active drug injectors particularly needle exchange policy. Levels of social capital are far lower in the communities where people of color and injecting drug users live: their information networks are informal, potential supporters have low levels of involvement in volunteering and they have limited social, economic and political influence. In contrast to gay men, who recognized the need to mobilize, there was much greater fragmentation and lower consensus in communities of color since homosexuality and substance abuse are highly stigmatized. African American and Latino leaders responded slowly to the epidemic. Neither of the two major subcategories of those at risk for HIV because of injecting drug use – people in ‘recovery’ and those who are ‘active,’ e.g. still using drugs and often sharing hypodermic needles with other people – created organizations. Instead, efforts were dominated by professionals, many of whom had past histories of addiction. Community involvement in the organizations that were created for IDUs and in communities of color primarily meant that the organizations hired people from the community; relatively few people from the communities served as volunteers or as board members (Chambré, 1997).

The Changing ‘Face’ of AIDS

The service and prevention needs of IDUs were essentially ignored for the first several years of the epidemic. By the fall of 1985, news articles were alarming: one third of new AIDS cases were IDUs. With an estimated 200,000 drug abusers in the city, between 50 and 60 per cent of whom were thought to already be infected, the issue could no longer be ignored (Nix, 1985). Recognizing both the seriousness of the problem and the likelihood of funding in the near future, a staff member in the New York State Division of Substance Abuse Services (DSAS) convened a meeting of substance abuse professionals in the late fall of 1985. Since DSAS, as a public agency, was limited in the kinds of actions it could take, the staff members who called the meeting recognized a need for a nonprofit organization to begin to do HIV prevention among drug addicts. Participants revived a moribund nonprofit, the Association for Drug Abuse Prevention and Treatment or A.D.A.P.T., which had been founded in 1979.