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community again
…
based very much on the understanding that the government was not going to
do it for us.” Community based AIDS work, having become the official conduit for all state
expenditures for AIDS care, acquired a higher degree of legitimacy within the public health
sector. Meanwhile, the state’s dependence on the care and information network that the
community had built “as a result of the government failure to do so in the early years further
supported the development of this alternative infrastructure” (Cuthbert 1990:41).
The community-based infrastructure, particularly through the patients’ empowerment
movement, fostered the growth of a new organizational form: buyers’ clubs. Buyers’ clubs
collated research on possible treatments, debunking some, accepting others with side effect
warnings, and publishing fact sheets and newsletters to those seeking information and options.
While the already existing alternative treatments movement taught people living with HIV/AIDS
about such modalities as visualizations, meditation, herbs, and crystals, the buyer’s clubs
concentrated on gaining access to forms of treatment not approved by the FDA. They purchased,
smuggled, or manufactured potential treatments, particularly antibiotics, from all over the world,
and distributed them at cost to their many members. Prior to the general availability of AZT in
1987, and continuing after, treatment advocates collected and even investigated anecdotal reports
of the efficacy of aspirin, egg lipids, acupuncture, extracts from the bark of Japanese trees, pastes
made from exotic fungi, and any other possible substance or therapy (including drinking ones
own urine) that anyone had used to fight opportunistic infections, strengthen the immune system,
or combat the symptoms of HIV/AIDS. When FDA-approved drugs finally became available
(one in 1987, three by 1990), the clubs added fact sheets and warnings on those to their
collections, sending patients back to their doctors armed with specific questions about drug
Convention