14. I Murdered My Child, But Not Alone
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164 14 I Murdered My Child, But Not Alone If hemophilia-HIV families and activists feared that the year-long investigation by the federal government’s Institute of Medicine (IOM) would be mere bureaucratic window dressing, the IOM took full opportunity to remedy that situation on September 12, 1994. From all over the United States and Canada, dozens of hemophiliacs and their loved ones showed up that day for an emotional, public IOM hearing at a nondescript auditorium in Washington, D.C., to describe what had happened to them. At times, their testimony was almost too much to bear. One by one, they took to the microphones to speak to IOM’s Committee to Study HIV Transmission Through Blood Products. The speakers trembled and wept. They shouted and pounded their fists. They waved photos of dead family members, thrusting them toward the committee so each person would be forced to take a closer look. They all wanted to know: How could the U.S. government have allowed this to happen? Some, like Petra Jason of Miami, described the horror of sticking needles into the veins of their little boys, only to find out later that the medicine they were injecting was contaminated with deadly viruses. “I murdered my child,” testified Jason, her voice trembling. Her only son, Bradley, died in January 1992, just after his first semester at Tulane University, where he had earned four A’s and two B’s. “But, members of this commission, I did not do this alone.” I MURDERED MY CHILD, BUT NOT ALONE 165 Jason had learned of her son’s condition after a hysterical phone call from her ex-husband on November 2, 1983. He had just been notified that a donor whose plasma was used in Bradley’s medicine was believed to have AIDS. Did she have any unused bottles from Lot Number NC8477? Jason had rushed to her kitchen junk drawer, where she kept the box tops from the medicine Bradley had already used. There, she had found a box top stamped NC8477. Then, five more just like it. The fourteen IOM committee members, most from prestigious medical and law schools including Harvard, Dartmouth, Yale, Georgetown University, and two campuses of the University of California, had been tasked with reviewing decisions made between 1982 through 1986. They were to hold hearings and conduct interviews with a wide range of experts, including federal health officials, blood bankers, industry consultants , hemophilia activists, physicians, and researchers. The September 12 meeting was a chance for what the committee termed “interested parties” to speak; fifty-nine such parties gave oral testimony and another fifty submitted written statements. Ultimately, the panel was supposed to determine if there had been adequate safeguards and warning systems, and then come up with recommendations . This mandate did not go nearly far enough to satisfy those who were demanding a full congressional investigation, as well as criminal charges at the federal and state levels. As mothers, fathers, wives, husbands, and children told their stories, tears flowed through the audience, even among some of the normally cynical journalists covering the event and, somewhat more discreetly, among some IOM panelists. Witnesses recounted how they and their loved ones were urged to use clotting medicines even for non-life-threatening bleeding episodes. Protestant minister Dana Kuhn, a mild hemophiliac from Virginia, said that in 1983, after breaking his foot, he was given the only dose of clotting concentrate he had ever used, as a precautionary measure. It was contaminated with hepatitis and HIV, which he unwittingly passed on to his wife. She died from AIDS-related complications four years later, leaving him to raise their two young children. Others described how they had been assured that the chance of a hemophiliac contracting AIDS was one in a million. Authorities had used BLOOD ON THEIR HANDS 166 that figure repeatedly until it was almost a mantra. Even after people tested positive for HIV, they were told that they wouldn’t get sick, because only promiscuous gay men would get AIDS. When hemophiliacs did become ill, many lost friends, homes, jobs, and health insurance. Marriages dissolved. Wives and children sometimes were infected. Other couples made the painful decision not to have more children or any children at all. Savings were exhausted and bankruptcies were filed. And for many, it was too late to sue, as their state statutes of limitation had expired. Several witnesses cited internal corporate documents that were being made public as...


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