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17 - AIDS Activism and the Pharmaceutical Industry

Published online by Cambridge University Press:  04 December 2009

Michael A. Santoro
Affiliation:
Rutgers University, New Jersey
Martin Delaney
Affiliation:
Founding Director and public voice, Non-profit AIDS foundation Project Inform
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Summary

The AIDS epidemic is widely recognized as a turning point in the relations between the people directly affected by a disease and the many groups, agencies, and institutions that respond to the disease. People with AIDS and their advocates are credited with spearheading several fundamental changes in how society and its institutions behave when confronting a new, life-threatening illness. Some of these changes include:

  • Reforms in the way new drugs are approved by the U.S. Food and Drug Administration;

  • Greatly enhanced communication between patients and their physicians;

  • A new emphasis on patient empowerment in all aspects of the healthcare system;

  • New inclusion of patients and advocates in scientific decision-making and the conduct of clinical research;

  • Greater involvement of the public at every level in the management of research at the National Institutes of Health;

  • More political oversight of how research is funded by taxpayers and how research dollars are divided between disease interest groups;

  • An unprecedented degree of interaction between patients, their advocates, and the pharmaceutical industry in the development, testing, pricing, and marketing of new therapies.

Given today's increasing concerns about the cost of healthcare, and the public's demand for ever better solutions to medical problems, this chapter will focus on the last item on the list, the dramatic changes that have occurred in how a patient community interacts with the pharmaceutical industry. Although the pharmaceutical industry has long maintained significant relations with the public and with various disease-interest, nonprofit foundations, there is little precedent for the ways in which companies now interact routinely with AIDS groups.

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Publisher: Cambridge University Press
Print publication year: 2005

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