A SOCIAL-HISTORY OF HUMAN-IMMUNODEFICIENCY-VIRUS INFECTION IN SWEDISHHEMOPHILIACS

One third of all hemophiliacs in Sweden were infected with human immun odeficiency virus via their medicines during 1979 to 1985. This was a major disaster to this small group of patients. On the basis of docume nts collected from official and unofficial sources, a description of t he events following the disaster was made. Unexpected social tensions arose in the patient association. During spring 1986, almost one year after the testing of every patient in the country, a nationwide psycho social exploration took place. The main objective was to study needs f or psychosocial services. The atmosphere was very charged at the time of the survey. The patients were more or less isolated and many people , both old and young, described their feelings of anxiety as terrifyin g and as a hardship they were unable to bear. Later the group graduall y was to adopt a more open attitude that also changed their attitude t o both the need of treatment and support. In time this led to a need t o turn to each other for advice and support.