10_Epstein - Lay Expertise - 416 Science,...

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Unformatted text preview: 416 Science, Technology,& HumanValues c A (along with a more recentspin-off organization alled the Treatment ction I Group)andthe Treatment ssues Committeeof ACT UP/GoldenGatein San Francisco.Anotherkey playeris the San Francisco-basedrganization roject o P a Inform,which lobbies for the developmentof effectiveAIDS treatments nd in worksto educate aypeople,particularly gay communities, bouttreatments. a l o In addition, number f independent ublications,ncluding he SanFranciscoa t p i N I basedAIDSTreatment ews and the New York-based reatmentssues (pubT lished by Gay Men's HealthCrisis),have played a crucialrole in evaluating c i a a clinicalresearch ndprovidingnformation bout linicaltrialsthatis considered widely credibleandoftenreliedon by doctorsas well as patients. AIDS treatmentactivism dates to the mid-1980s, when activists began a t clamoringfor the rapidapprovalof experimental reatments nd established so-called "buyersclubs,"organizations ccupyinga grayzone of legality that o t u importedand distributed nproventreatments o patientsaroundthe United States (Arno andFeiden 1992). Activist ire was directedlargelyat the FDA, whose "paternalistic" olicies of drug regulation were perceived to rob p t B patientsof the right to assume the risk of an experimental reatment. y the late 1980s, however,activistattentionhadshiftedto earlierstages in the drug developmentpipeline, in partbecause of growing concernsaboutthe ethics of clinical researchand in part because activists recognized that it was no good fighting for fasterapprovalof drugsif therewere few such drugsto be f approved.This realizationimplied a shift in targets romthe FDA to the NIH o and,specifically,to the AIDS ClinicalTrialsGroupof the NationalInstitute f f D e AllergyandInfectious iseases,the bureaucraticntityresponsible or admino isteringthe network f publiclyfundedclinicaltrialsof AIDS treatments. a As early as 1986, John James, a formercomputerprogrammer nd the editor of AIDS Treatment ews, had soundeda call to arms: N With independentinformationand analysis, we can bringspecific pressureto bear to get experimentaltreatmentshandledproperly.So far, there has been f b littlepressure ecausewe havereliedon expertsto interpretorus whatis going on. They tell us what will not rock the boat. The companies who want their w profits,the bureaucrats ho wanttheirturf,andthe doctorswho wantto avoid making waves have all been at the table. The persons with AIDS who want their lives must be there,too. (James 1986; emphasisadded) J To "rely solely on official institutionsfor our information," ames (1986) advised bluntly,"is a form of groupsuicide." Yet how could laypeople bring such pressure to bear? Large, graphic, well-executed and well-publicizeddemonstrations--includingone at FDA i i headquartersn 1988 (Bull 1988) and anotherat NIH headquartersn 1990 than 1,000 protesters--helpedensurethat (Hilts 1990), both involving more o representatives f these agencies would pay attentionwhen activists spoke. ...
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