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Organizational Innovation Among HIV/AIDS NPOs, 1981-1985
Perceptions of HIV/AIDS in the early 1980s, for those who were interested in it at all,
were shaped predominately by scant scientific data. Community organizing initially followed the
criteria established by the Centers for Disease Control and Prevention (CDC), generating new
organizational efforts for each new crisis area only after it was officially identified. Later, as the
community groups gained experience and expertise, they began to define the contours of the
problem themselves, and to export their definitions and priorities to the public health sector. The
purpose of this paper is to examine the interorganizational conditions that allowed a community
of political outsiders to define the agenda in a policy domain that required both community and
state participation.
My contention is that the volunteers and activists of the organized HIV/AIDS community
created a new field of work with a general awareness that (1) their various efforts were part of a
larger, community-based process; (2) that the work they defined in the early years would give
shape to the actions and priorities of the state, once government chose to take an active part in
HIV/AIDS issues; and (3) that specialization and division of labor in the field over time reflected
a shared sense of collective ownership among organized groups of people affected by HIV/AIDS.
Data come from a series of 45 interviews conducted by the author during the mid-1990s
with volunteers and staff members at more than thirty community-based nonprofit organizations
in New York City. Participants were asked to discuss their own histories with HIV/AIDS work,
and the organizational histories of the groups with which they had worked. From this qualitative
data, I have constructed an organizational ethnography of the field of nonprofit HIV/AIDS work
and the efforts of those in the field to change HIV/AIDS policies and practices.
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Convention