Becoming Victims of Drug-Induced Suffering (DIS): The Case of Japanese Hemophiliacs with HIV

This study examines the process by which people become victims of “Drug-Induced Suffering” (DIS), especially individuals with both hemophilia and HIV by contaminated blood concentrates, through the examination of several life-story data and documents. I have participated in a research project since 2004 aimed at collecting and analyzing the life stories of doctors and patients with hemophilia since 2001.

HIV/AIDS as DIS has been the central point of understanding about HIV/AIDS in Japan, because much of the current medical system regarding HIV/AIDS was constructed after the lawsuit movements under the banner of DIS. The indigenous notion of DIS not only contributed to generate a robust dichotomy between “innocent” victims and “guilty” assaulters but also to form solidarity between different DISs—for example, the thalidomide-caused damage in the late 1950s, the Subacute Myelo-Optico-Neuropathy (SMON) caused by clioquinol in the 1960s, and so on. People whose lives were changed by drugs join in DIS solidarity for compensation and pursuing liability; other victims of DISs who share an idea of extermination of DISs known as the “Japanese National Liaison Council for Associations of Victims of DIS” were mobilized in 1999.

Most Japanese individuals with both hemophilia and HIV improve by becoming victims of DIS. However, this is evidence of the solidarity of the original hemophilia communities not having functioned enough. For example, Irish hemophilia patients regarded HIV infection by blood concentrate as an issue for the whole hemophilia community itself. Therefore, hemophilia patients without HIV (conscience adherents) who led compensation movements on behalf of hemophilia patients with HIV were not able to be open while Japanese hemophilia patients with HIV separated from other hemophilia patients on purpose to focus on drug victimization. That is, becoming victims of DIS offers the way of the different solidarity of hemophilia.