Hemophilia: a story of success--disaster and the perseverance of the human spirit, Part 2.

Abstract

IIn retrospect, it is now clear that the hemophilia holocaust began to take shape early in 1983, when people started getting sick at various hemophilia treatment centers around the country. It was in that year, upon visiting the Los Angeles Hemophilia Treatment Center, that I ran into my old friend, Steve Emerson. Just by looking at him, I could tell that he was not doing well. He looked very thin and sickly, and I was taken aback by how distant he seemed. That was the last time I saw Steve, as he became progressively sicker and died. His death was shocking because he was a close friend and one of the first at the Los Angeles treatment center to be struck by this new killer, now called Acquired Immune Deficiency Syndrome (AIDS). I remember the night I got the news that Steve had died. I sat alone all night grieving, while trying to understand what this meant for the rest of us with hemophilia. When I was tested for HIV in 1985 and was told that I was positive for the antibodies for HIV, it was one of those life-defining moments when everything one is as a person comes into question. On a visit to the treatment center in Los Angeles, I was asked by the staff nurses if I understood the meaning of my positive HIV test. I was then told that I would “probably be dead within 5 years.” When I failed to accept this perspective as the gospel, I was then accused of being in denial. I later found out that this scene was repeated at treatment centers across this country and that the message of death was being conveyed on a daily basis. With this interaction began my formal relation with what we, who had hemophilia, would later label the “hemophilia holocaust.” Between 1985 and 1989, I and others close to me attended many funerals and always stood around the grave wondering who would be next. We were all very angry with what had happened; however, we had not yet uncovered the reality of what had occurred. Many were left believing that this was a terrible accident that would kill us all. I was also consistently struck by the lack of services or discussion related to AIDS within the hemophilia treatment centers and the National Hemophilia Foundation (NHF). It was as if we were simply expected to quietly go into the darkness and die, even though we were looking at the death of more than half of our entire community. The early 1990s was a time of hopelessness and despair for the hemophilia community, with many people feeling that they had been abandoned by their doctors, their advocacy organizations, and the federal government. However, the seed of change was being planted in the Boston area by Jonathan Wadleigh and Tom Fahey. Seeing the need for advocacy and support for those with hemophilia who were HIV infected,