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In the late 1940s Dr. Brinkhaus had been the first president of the Medical And Scientific Advisory Committee for the National Hemophilia Foundation. In the late sixties, Dr. Brinkhaus convinced an executive from Hyland Industries to begin manufacturing concentrated factor VIII, in order to get it to all the people who needed it. This had been a hard sell since the hemophilia community was only a small portion of the population. Once Hyland was in production, another factor concentrate, which had been developed by the Red Cross, was withheld from production on the grounds that the Red Cross shouldn’t be permitted to compete with private industry. Producing the amount of factor concentrate needed by severe hemophiliacs and fractionating plasma into valuable products such as hemoglobin soon developed into a major industry. Hepatitis B was a common contaminant of whole blood. With the advent of pooled plasma, Hepatitis B had become a given for the hemophiliac. Technology was available as early as 1978 to eliminate Hepatitis B from blood clotting products, but it was considered cost prohibitive to the industry. This technology, heat treatment, also would have eliminated HIV which turned up in clotting factor products as early as 1978.
With the advent of AIDS the hemophilia community was devastated by the magic bullet, factor concentrate, which had once given mobility and a normal lifestyle to the hemophiliac. Many hemophiliacs chose to keep their hemophilia a secret from the community in which they lived because of the stigma of AIDS. When the companies began screening and purifying products, the costs skyrocketed. The home-care delivery system was set up in order to serve a community in need because it became profitable, and in many cases the government paid for it. The delivery of AIDS drugs also greatly increased the profits of the home-care industry.
The National Hemophilia Foundation had given a voice to the community even though individuals often disagreed with what that voice said. Eventually, many thought that the Foundation betrayed its trust and allowed the industry and the doctors, who had become gods, to take over. There were many doctors on the medical and scientific advisory committee that testified on behalf of the pharmaceutical industry against the community they were serving when it came to court battles regarding the blood contamination of the late seventies and early eighties. There was one in particular. Call him Aledort.
Susan Resnik had worked very hard on her social history of hemophilia, and I had read it, but still I was perplexed as to the nature of the Beast, but not because of any limits to her storytelling and research. I urged her to seek out a publisher for her manuscript. The hemophilia story had sucked me into the pool of blood, with death lingering and imminent, allowing me to drink from the cup of the vampire to keep myself alive. It was nothing but a blood thing. The pain and frustration of being at the mercy of bean counters and blood suckers just to make it through the day was the plight of the hemophiliac. Still, they had come a long way from the days of Rasputin in Russia, given access to the royal court because hypnosis seemed to help the young Crown Prince with his bouts of bleeding.

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