(Bio)Medicalization and Rare Diseases: An Analysis of the Rise of the Category

Manuela Ribeiro Cirigliano, Universidade Estadual de Campinas

"Rare diseases" is a political category born by the hands of patient advocacy in the United States in the 1970s and consolidated in the 1980s with the approval of the Orphan Drug Act. This American law was set to facilitate the development of drugs for the treatment of rare diseases (orphan drugs) and was the first in the world to address the needs of the population with rare diseases. It inspired the making of similar policies in other countries and the activities of patients' associations worldwide and is considered a successful policy. However, there are debates about the sustainability of the Orphan Drug Act because the high prices for the acquisition of orphan drugs are overcharging different countries' public and private health systems despite the aid provided by the law for their research and development. The making of the Orphan Drug Act and the "rare diseases" category have been objects of study in Social Studies of Science and Technology. However, the implications of the cultural context of medicalization and biomedicalization of the United States in the same period of the rise of the Orphan Drug Act and of the "rare diseases" category have received little attention. This study aims to analyze the implications of that context for the 'rare diseases" category with bibliographical research on the following topics: (Bio)medicalization of rare diseases, the history of the rise of (bio)medicalization, and the biotechnology industry of that period by the lens of the co-production studies. This research hopes to increase the knowledge about the influence of (bio)medicalization on structural dimensions of the "rare diseases" category.

No extended abstract or paper available

 Presented in Session 207. Health Professionals’ Reaction to Emergent Diagnoses