Background:

• AIDS  was first described in the U.S. as the "gay plague"
• The public viewed AIDS as a "biblical judgement brought on by gays" because of their sexual preferences
• Little was known about how quickly treatments and or cures for AIDS could be developed
• People diagnosed as HIV positive were told to expect several years of normalcy before the onset of the diease

Clinical Trials:

• Many AIDS patients began to participate in experimental drug programmes becuase it was the only way that they could receive experimental drugs legally.
• While participating in these prgrams patients they had to follow strict protocals that forbade them from taking other drugs that could potentially disrupt the experiment, even if these drugs were helping them stay alive
• A lot of these experiments did not follow the ideal of a perfectly controlled clinical trial because patients were pooling experimental drugs with placebo and drugs and others were taking forbidden drugs at the same time.

Activism:

• New activist groups began to emerge ( Project Inform and AIDS Treatment News) to assess the benefits that could be gained from new experimental drugs.
• These activist groups were bothered by the strict protocols for the clinical trials of experimental drugs and the fact that many of the patients weren't complying witht the experrimental guidelines.
• ACT UP is an activist group led by lay experts that emerged to reform the way clinical testing was conducted

  
Community-based Trials:

• AIDS patients began to redefine the doctor-patient relationshp in order to get around the red tape that was involved with clinical testing
• In order to obtain expertise on experimental drugs and clinical testing the AIDS patients had to learn the language of biomedicine.
• Community doctors and AIDS patients began to design their own trials
• These community-based trials began to see a lot of success in grabbing the attention of AIDS researchers  after their testing of aersolized pentamidine led to FDA approval.

Progress for AIDS Activists:

• The new lay experts focuse on collecting evidence and evaluating it quickly and more effectively
• By 1989 Activists groups began convincing some of the most powerful scientists of their ideas on clinical testing
• Acitivists saw great success in making clinical trials more patient oriented
  

How did they make their voice heard:

• The activists were effective because the hd genuine expertise to offer
• AIDS patients know the needs of people with AIDS
• Activists could better explain the pros and cons of particular trials to AIDS patients
  
• AIDS patients and activists learned the language of science which allowed them to translate their criticisms of standard clinical trials.  Now scientists were forced to respons to their demands because the patients and activists were speaking the same language as the scientists
• Activists were able to get their expertise recognized as expertise because they understood not only understood the effect of AIDS on its victims, but also because they understood the conduct of clinical trials.

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