How HIV infected haemophiliacs in Japan were informed of their HIV-positive status

The purpose of this study is to find out how HIV-infected haemophiliacs were informed and notified of their HIV infection. Self-reporting questionnaires were mailed to approximately 500 patients, about one half of the haemophiliac patients with HIV in Japan. The response rate was about 57% (n=283); and 270 (male=269) patients, apart from secondary and tertiary infected patients, were eligible as subjects for the study. The mean age was 31.2 +/- 9.9 years. Of these subjects, approximately 60% did not receive explanation regarding the risk of HIV infection via unheated blood products. More than 60% did not receive notification until 1990, or five years after the test became available in Japan. Contents of the explanations being given at the time of notifications were poor. In this paper, some problems of notifications of medically induced HIV are discussed, and the lack or delay of explanation/notification is concluded to be a consequence of the paternalistic attitudes of Japanese physicians and the iatrogenic nature of HIV infection.