The Return of the Patient: AIDS and the AZT trials
It has oft been argued that the most important sociological effect of modern medicine has been "the disappearance of the patient" from the medical world. Steadily increasing confidence in the exclusive expertise of doctors and scientists concerning matters of the body and disease, the "doctor knows best" assumption, has meant that the patient himself is no longer regarded as having anything worthwhile to contribute to an understanding of what the problem is. Modern medicine does not ask the patient "what is wrong with you", but "where does it hurt" instead.
The advent of the AIDS epidemic instigated a frantic search for any drug which might combat the disease. The accepted method for testing new drugs at the time was the randomised control trial, a method which used placebo pills in order to provide the control data necessary to make an accurate statement about the effectiveness of the drug. As HIV and AIDS were such drawn out and complicated diseases, however, the testing of new drugs to fight the disease was also particularly complicated.
Because AIDS targets the immune system, sufferers succumb to infection by other diseases. Due to this, sufferers usually take a wide array of drugs designed to combat these specific diseases which the immune system can no longer hold off. However, the use of these drugs during a placebo controlled trial of AZT would seriously disrupt the reliability of the data, and so those on the placebo would now be completely unprotected by the RCT ban on the use of other drugs. A great many found this to be completely unacceptable, especially those who discovered they were being given placebos, termed by the media as "sacrificial lambs". Most patients in this situation turned to the underground in order to supply themselves with the medicines banned from the RCT.
It soon became clear that this method of testing, "fastidious testing", was unsuitable for the AZT trials. The patient was treated as object, and the acquisition of drugs from unregulated sources meant that results were unreliable. It was becoming increasingly difficult for those afflicted with HIV to assume the dual roles of patient and research subject. Mainly due to the patient activist group ACTUP, the trials were restructured so as to allow for the effect of other drugs to be compensated for in the results, yet still acknowledging the need for placebo controls - this compromise represented the "pragmatic trial".
Through working to involve other social groups in the AZT trials, not just middle class white homosexuals, ACTUP increased its representation and influence. Through strategies such as this, the patient orientated organisation was turning a structural problem into a biological one.
The influence which the patient centred body ACTUP exerted on HIV and AIDS research was unprecedented. This can be put down to the blurring of roles and responsibilities concerning the production of biomedical knowledge about AIDS, a pathway which was not common to science. Thus, argues Epstein, AIDS research can only be understood as an unusually broad, public and contested field. This does not, however represent the "return of the patient", but the lifting of an intellectual division between the lay public and medical researchers.
http://www.unregisterednews.com is a website specialising in the latest news issues and current affairs, politics, finance and science, as well as humor and special features over a wide range of topics, such as the social history of medicine. The original article with pictures: http://www.unregisterednews.com/content/view/57/58/
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