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: SUSAN_CHAMBRE@AOL.COM
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).
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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).
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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 forprofit 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
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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
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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
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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 Krim1 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,
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$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
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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
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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
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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.
ADAPT volunteers soon began to do 'street outreach' in neighborhoods with high
levels of drug use. They offered people information about HIV transmission and condoms
and helped people to get into drug treatment quickly. Some of this work took place in
‘shooting galleries’ where addicts shared or rented needles. They instructed active drug
injectors about how to clean their needles and works and they distributed bleach kits so
they could clean their needles. ADAPT members realized that distributing condoms and
bleach were partial solutions. In November, 1986, they drafted a position paper entitled,
'Distribution of Hypodermic Needles and Syringes to Intravenous Substance Users' which
endorsed an experimental program to distribute sterile needles and syringes, an idea that
was already being debated (Association for Drug Abuse Prevention and Treatment, 1986).
New York’s Pilot Needle Exchange
The idea of distributing sterile needles and syringes dates back to the late 1960’s;
pilot efforts already existed in the United Kingdom and in Amsterdam (Stimson, 1988).
The idea was brought to public attention in 1985 when New York City’s Health
Commissioner, David Spencer, suggested that the city seek repeal of a state law requiring a
doctor’s prescription to purchase hypodermic needles in September 1985. He also
recommended that substance abuse treatment programs might become 'arrest-free zones'
where addicts could exchange used needles for new ones (Golubski and Michelini, 1985).
Virtually every public official opposed the idea but The New York Times endorsed it.
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Sencer’s successor, Steven Joseph, convinced Mayor Koch that it ought to be tried on a
pilot basis (Joseph, 1992). The city petitioned the state and the idea gained momentum and
legitimacy when it was endorsed by the New York Bar Association’s Committee on
Medicine and Law, the National Academy of Sciences and the Director of the AIDS
Program at the Centers for Disease Control (Sullivan, 1986a, 1986b). By the fall of 1986,
the city’s mayor, the State Health Commissioner and the governor all agreed that a pilot
needle exchange ought to be mounted and Joseph announced that he expected that it would
begin in early 1987 ('City to Prepare Plan for Addicts,' 1986). But, the proposal moved
slowly as the scientific and law enforcement components were fine-tuned (Clifford, 1992).
As a way of forcing the issue, ADAPT’s Executive Director, Yolanda Serrano, told
a local reporter that the organization was considering needle distribution despite its illegality
(Lambert, 1988). Although ADAPT’s board disavowed her statement, her remarks
reopened the public conversation and Governor Cuomo announced that he would have 'an
open mind.' The effort continued to move slowly and the city’s pilot needle exchange
opened its doors on November 7, 1988. It was the second legal needle exchange in the
country, far smaller than originally envisioned, with one location rather than four. ADAPT
was instrumental in its modest success since it recruited nearly four in ten of its participants
(New York City Department of Health, 1989).
The fiercest opposition came from the city’s African American community. One
month before the pilot program began, the Black Leadership Commission on AIDS pointed
out that needle exchange was a racist social policy that condoned drug use, was a poor
substitute for expanding drug treatment and demonstrated insensitivity to the impact of drug
use on African American communities (Thomas and Quinn, 1993). Several weeks after the
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program began, the City Council voted 31 to 0 with one abstention that the pilot program
ought to be stopped ('End Urged to Needle Plan, 1988). Not surprisingly, the pilot program
was ended in early 1990 by a newly elected Mayor and his health commissioner, both of
whom were African Americans. ADAPT and ACT UP jointly protested the decision but the
center of gravity moved away from ADAPT whose management practices were being
questioned by city officials. ACT UP became the moving force behind the policy.
Civil Disobedience and ACT UP’s Needle Exchanges
In collaboration with the National AIDS Brigade, ACT UP members began to
illegally distribute needles in several neighborhoods. They initiated a test case like one in
Boston National AIDS Brigade members had been acquitted. The New York group invited
arrest at a demonstration where they announced that they would be exchanging needles.
They saw the test case as an act of civil disobedience and anticipated that their acquittal
would lead to the reinstitution and expansion of needle exchange in New York (Anderson,
1991). Between March 1990 when ten people were arrested and June 1991 when they were
acquitted, ACT UP operated five illegal exchanges, an open secret since their schedules and
locations were publicized in a brochure (Harm Reduction Institute, n.d.).
Further support came from several researchers who offered evidence that needle
exchanges reduced HIV transmission without leading to increased substance abuse. One
formidable opponent, the Black Leadership Commission on AIDS, reversed its position
('Minority Task Force on AIDS Policy Statement on Needle Exchange as a Way to Prevent
the Spread of HIV/AIDS,' 1991). In 1992, needle exchange was reinstituted, initially with
funds from the American Foundation for AIDS Research (Navarro, 1991). With virtually no
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publicity, the bulk of support began to come from New York State under a ‘harm reduction
initiative’ that began in 1993.
A Stalled Social Policy
The number of needle exchanges continued to expand during the nineties despite a
ban on federal funding. In 1998, 113 exchanges distributed about 19.4 million syringes
('Update, ' 2001). Beginning in 2001, New York State joined 42 other states to permit the
purchase of syringes without a prescription (Pleven, 2000). Although the results are not
unanimous (Bruneau, Lamoth, et. al., 1997; Strathdee, 1997), most evaluations point out
that needle exchanges reduce HIV transmission while not encouraging drug use (US
Government Accounting Office, 1993). Several professional organizations have endorsed
the concept including the American Public Health Association, the National Academy of
Sciences, the American Bar Association and the American Medical Association. President
Clinton and Secretary of Health and Human Services, Donna Shalala, also endorsed needle
exchange. But, because of the controversial nature of the idea and opposition by leaders of
the ‘war’ on drugs, the ban on federal funding for needle exchange continues (Goldstein,
1998) and is unlikely to change under a Republican administration. However, needles are
widely available as commodities, a quite different strategy that has not been as fully
researched as the idea of needle exchange.
Nonprofits, Policy Design and Agenda Setting: Implications of the Study Nonprofits and
Policy Design
One widely accepted view about the merits of grass-roots organizations is that they
are composed of citizens whose experiential knowledge is superior to the professional
knowledge of experts. Both case studies illustrate the enormous naïveté of assuming a
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distinction between lay citizens and experts. In the AIDS community, the roles of client,
volunteer, staff member, expert, civil servant and activist overlapped enormously and
individuals sequentially and often simultaneously occupied more than one status.
Volunteers and nonprofits played important roles; so too did experts and civil servants.
The idea of community-based research came from people living with AIDS as well
as professionals like Joseph Sonnabend who felt that the scientific establishment was
moving far too slowly to find a cure. Similarly, work done by members of ACT UP’s
Treatment and Data Committee was informed by the work of scientists who educated
individuals who became lay experts or ‘treatment activists.’ While it is appealing to think of
their knowledge and their activities as ‘grass roots,’ they relied heavily on people with
strong connections to the scientific establishment and those with scientific training. This
was also the case for the development of street outreach for active drug injectors and needle
exchange policy. There, the experts and the activists overlapped considerably. Alongside the
early ADAPT volunteers who did street outreach, all of whom were substance abuse
treatment professionals, were a number of social scientists who simultaneously served as
advocates and researchers (Marmor, Des Jarlais et al., 1984).
In addition to a bifurcation between laypersons and experts, discussions often
distinguish between activists and bureaucrats. Here too the overlap was considerable.
Despite the fact that GMHC was a target of ACT UP’s criticism, numerous ACT UP
members were employed by GMHC both before and after they began their careers as
activists. The activist-bureaucrat role was also combined by a number of New York State
and City employees. Some, like a staff member in the City’s AIDS Library, recounted to me
how odd it was to picket the Health Department and then go to work in the same building.
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Others were far more public about this unique combination. The 1993 New York State
AIDS Institute’s Annual Conference featured a session on the future of ACT UP; a number
of panelists employed in the Institute were also key leaders in ACT UP.
The insider-outsider combination was also apparent in ACT UP itself. By 1990,
ACT UP members began to take their ‘place at the table’ in various decision making bodies
like the City’s HIV Planning Council which allocated federal funds under the Ryan White
C.A.R.E. Act. Members of ACT UP’s Treatment and Data Committee were consulted
regularly by scientists, staff in the FDA and the National Institute for Health on scientific
priorities and the design of clinical trials. Treatment activists split off from ACT UP at the
end of 1991 and formed the Treatment Action Group (TAG) because of differences in
strategy. Members of ACT UP saw TAG as a group of middle class white men (Wofford,
1991) and preferred to remain outsiders since, as they note on their website, 'Our job is not
to be invited to coffee or to schmooze at a cocktail party... Our job is to make change
happen as fast as possible and direct action works for that.'
The grass-roots expertise of nonprofessional activists was more important in the
first case study than in the second. There, laypersons who had strong expectations about the
ability of science to find a cure coupled with the idea that a cure existed but had not been
tested led to a critical stance about the ways that drugs are tested and marketed in the US.
By challenging the accepted paradigm of scientific research, drug testing and drug
marketing, they hastened policy changes that benefited patients with various diseases, not
just AIDS. In the case of needle exchange, the bulk of the work of identifying the kinds of
strategies that were needed was done by people working in the substance abuse field. Once
the ideas had been formulated, however, the illegal needle exchanges were staffed by non-
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professionals. Yet, while ADAPT staff were not directly involved in the needle exchanges,
they were keenly aware of their existence, attended the same meetings and engaged in joint
advocacy.
Passing the Torch
Each case involved a series of organizations that took the lead at various times. The
best analogy is the image of passing the torch. The PWA Coalition developed ideas about
empowerment that set the stage for the founding of CRI; recognition of the inherent
limitations of community-based research in the process of releasing and pricing new drugs
provided the impetus for efforts by ACT UP; and limitations of street activism led members
of the T & D committee to become insiders.
In the area of prevention and needle exchange, the early work done by ADAPT
articulated many of the issues. However, as ADAPT became dependent on public funds,
more of it’s advocacy work involved collaboration with other organizations. From ADAPT,
the center of gravity passed to ACT UP whose members mounted an illegal needle
exchange. The three exchanges they established became the core of two of the city’s legal
exchanges. Once New York legalized the needle exchanges, ACT UP leaders directed
several of the legal exchanges and several later moved into related work like the movement
to legalize drugs. This progression suggests that once intermediate goals have been reached,
activist organizations split or members leave. Some people continued their work and shifted
from the streets to the bureaucracy or to the meeting room; others pursued related goals.
Today, ACT UP is a shadow of its former self with a small number of members who
continue to pursue goals related to a broader and more complex set of issues including
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unequal access to health care by the population increasingly being affected by HIV, people
of color living in inner cities.
Insiders, Outsiders and the Media
A narrative of the history of the AIDS epidemic based on material from the mass
media looks quite different from one that relies, as this one does, on material from a
number of sources including interviews and community newspapers. A number of books
and mass media news articles overstate the role of community-based organizations and
downplay the impact of experts, government officials and insiders. Two examples
illustrate this point. In the case of testing new drugs, CRI’s work is held up as an example
of how community-based research served as a model for future investigations. Yet, its
first major success, aerosalized pentamidine, was not a new drug but a new method of
administering a drug that was already in existence (Arno and Feiden, 1992). Moreover, by
the time CRI became involved, testing was already being underway at Cornell University
Medical Center by the academic researcher who realized that it might be aerosalized
rather than directly injected. CRI sought funding from the drug manufacturer to test the
drug but its trials were not the sole evidence for eventual approval: the drug was tested by
the County Community Consortium in San Francisco, a nonprofit group based at San
Francisco General Hospital (Nussbaum, 1990). Similarly, needle exchange was originally
proposed by a public official and during the first round of consideration, in the fall of
1985, nonprofit organizations did not join in the debate. Yolanda Serrano’s 1988
statement to the press that ADAPT had either decided or was considering breaking the
law was not an agenda-setting act but a catalyst that may have hastened a process that was
already underway.
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Coalitions and Policy Formation
ACT UP is frequently described as the major force behind changes in the process of
the releasing and pricing new drugs. Within the first two years of its founding, it appeared
as if ACT UP achieved enormous success on several fronts: lowering the cost of AZT; the
creation of a parallel track in which doctors could prescribe drugs that had only completed
the first stage of FDA approval (for safety) since patients might not otherwise have access
to a clinical trial and the initiation of federal funding for community-based clinical trials
involving private physicians. But, although its demonstrations garnered enormous attention,
ACT UP’s direct actions complemented the behind the scenes work of others in the AIDS
community including leaders of the National Organizations Responding to AIDS and the
AIDS Action Council (Lugliani, 1989), groups which received support from the very groups
that ACT UP often criticized, including GMHC.
Even though ACT UP castigated GMHC for its inaction, the two organizations had
a less conflicted relationship than often suggested. They often cooperated in a ‘good copbad cop’ scenario. The evidence reviewed here suggests that ACT UP publicized and
discussed but did not create policy initiatives. GMHC played a central role in advocacy
work throughout the epidemic. It started and supported advocacy organizations and worked
on the inside while being conscious of the important role played by street activists. Initially
unsure of the distinction between lobbying and advocacy, GMHC moved into advocacy
slowly. After 1985, it began to provide significant amounts of funding and leadership for a
local organization, the New York AIDS Coalition, as well as the nationally focused AIDS
Action Council and National Organizations Responding to AIDS. In February, 1987, a
month before ACT UP was founded, GMHC’s executive director traveled to Bethesda
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Maryland to urge government scientist Anthony Fauci 'to take a more activist role' (Dunne,
1987).
Needle exchange policy was also moved forward by a coalition of organizations
after the city’s first pilot exchange ended. Supported by AmFar, staff from several
organizations met to develop policies and procedures for legal needle exchanges. The AIDS
Action Council (1991) hosted a roundtable on implementing syringe exchange in October,
1990. Several weeks after Mayor Dinkins announced that the city would establish legal
exchanges, a GMHC employee who was a leader of the ACT UP needle exchange invited
volunteers in the illegal exchanges and in several CBO’s likely to mount legal ones to attend
a meeting to discuss AmFar’s anticipated funding of legalized needle exchanges (Elovich,
1991).
Conclusion
These two case studies describe the evolution of two rather different policies. The
first, the more rapid release of new drugs to find a cure for AIDS, moved forward for
several reasons. The primary one is that the idea was highly consistent with American
values. Americans cherish the central place of medicine and believe in the ability of science
to find cures and to sustain if not save people’s lives. Existing policies that impeded such
progress were ripe for change. AIDS advocates were important in identifying the flaws and
amplified a preexisting position of some government officials who thought that changes in
the drug approval process were needed.
The second policy issue, needle exchange, has had a far more complex history.
While believing that we have a responsibility to save lives and prevent disease, our
resistance to policies that tolerate substance abuse is strong. Although advocates endeavored
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to frame the issue of needle distribution as a measure that does not increase or condone drug
use – and some advocates received generous government funding for research documenting
the effectiveness of needle exchange – the idea is too far outside the boundaries of
acceptable policies since people who turn to needle exchanges use the needles to inject
illegal drugs. Yet, at the same time, the cost of caring for people with HIV illness is so high
and the prospect of spreading HIV to ‘innocent victims’ – the sex partners and offspring of
drug injectors – is so intolerable, that needle exchange has been stridently debated. The
solution, to have nonprofit rather than public organizations run these programs and to
operate them on a small scale, removes public agencies from involvement in a controversial
policy giving the illusion of private responsibility for an area that receives public funding
from some localities. Rather than making access to sterile injection equipment a public
responsibility supported by public funds, a substantial number of states, most recently New
York, have made access to needles and individual responsibility whose costs are borne by
users rather than by the public.
Nonprofit organizations played a key role in designing AIDS policies and setting the
public agenda. The collaboration of professionals and laypersons strengthened the effort.
The nonprofessionals were, however, a fairly self-selected and highly educated group.
Professionals had an understanding which complemented the grassroots knowledge of
nonprofessionals. Together they were able to effectively communicate with public officials
and utilize the mass media to their advantage. By providing vocal support for some changes
and ignoring others, they also set the parameters of the public debate.
The study also leads to the ineluctable conclusion that the social space occupied by
civil society overlaps considerably with the public sector. Behind the scenes, some
20
government officials consciously encouraged nonprofit leaders to forward shared agendas.
AIDS activists, government scientists, government bureaucrats, volunteers and staff in
nonprofit organizations collaborated with one another to fashion policies to save lives:
sometimes their own. In both cases, professionals became activists and activists became
professionals. Even more striking was the fact that civil servants became activists and
activists became civil servants. While people in community organizations can invent new
strategies and set the terms of the public debate, the role of civil society is ultimately
affected by cultural constraints. Releasing drugs quickly and giving patients access to
experimental treatments became incorporated into public policy because it made sense to
Americans. In contrast, using federal funds to give active drug injectors equipment to
reduce HIV transmission yet at the same time sustain their use of illegal drugs is an idea that
currently goes beyond the bounds of acceptable social policy. Instead, the issue has been
made a private responsibility, a strategy that is also consistent with American culture.
21
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30