"The History of Hemophiliacs in Japan: Until 1983"
last update: 20151224
The History of Hemophiliacs in Japan: Until 1983
The purpose of this paper is to describe clearly the history of hemophiliacs and their families in Japan in the 1970's. For hemophiliacs, this was a seminal and optimistic period, which has been overshadowed by HIV scandals since 1983.
The discovery of "cryoprecipitate" in 1965 led to the development of coagulation factor products, which controlled bleeding and liberated hemophiliacs from pain. In response, hemophiliacs and their families established the "Japan Hemophilia Fraternal Association" (ZENYU) in 1967 to appeal for public health coverage of the new treatments. Their activities, and those of other patient groups, resulted in the government's creation of the "Treatment and Research for Specified Children's Chronic Diseases" system in 1974. Soon after, in 1975, the "Young Hemophiliacs Club," which was formed to enable hemophiliacs to participate in society more fully, spread information about "home infusion" treatment throughout the hemophiliac community. Meanwhile, hemophiliacs also fought in society to correct misinformation and discrimination. For example, protests arose in 1971, to contest a high school's refusal to admit a hemophiliac student, and in 1977, in reaction to inaccurate descriptions of hemophilia in the mystery novel, "Sabita Honoo". After the latter incident, to educate the public and the medical community about advances in hemophilia treatments, ZENYU published, in 1981, a medical book entitled, Hemophilia. A controversial essay, "Shinsei na Gimu", which advocated prenatal diagnosis of disabilities, divided hemophiliac's opinions in 1980, however.
Of the radical changes experienced by hemophiliacs and their families, two were most significant. First, "home infusion" and public health coverage for it facilitated hemophiliac's social participation. Second, as hemophiliacs entered into society, they had to act together repeatedly to change mistaken social attitudes about hemophilia. It is the hope of hemophiliacs and their families, therefore, that society properly understand hemophilia.