The Evolvement of Medical Care at Public Expense under the Regime of the Principle of Policy for Rare Diseases: An Analysis of the Role of Medical Researchers

Abstract

This paper examines the characteristics of Japanese medical policy for the patients with rare diseases (“Nanbyo”) under the regime of the Principle of Policy for Nanbyo (Nanbyo Taisaku Yoko) in 1972. By analyzing the historical documents of medical research projects and the discourses of the medical researchers who participated in these projects, I find that social policies for the patients with rare diseases have been significantly affected by the research-oriented paradigm in which clinical medical researchers in public hospitals and national university hospitals have played a major role. A symbolic consequence of this research-oriented rare disease policy is the fact that out-of-pocket medical care expenses of patients with rare diseases have been publicly subsidized in the name of “rewards for clinical donor”, not as social and medical care policies.