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80 8 All for Business Weinberg had been vetted by the Hemophilia Association of New Jersey and hired by nearly twenty hemophilia families, and he was becoming known by activists as a lawyer with some credibility, or at least a lawyer worthy of the benefit of the doubt. But the community’s distrust of lawyers and others was entirely justified. They felt they also had been deceived by the government, the companies, their physicians, and the National Hemophilia Foundation. When it came to the safety of clotting-factor concentrates, the not-forpro fit NHF, headquartered in New York City, had taken some controversial positions that seemed blatantly influenced by industry ties. Formed in 1948 to advance the interests of the nation’s hemophiliacs, the NHF had nurtured its relationships with the blood-product manufacturers— companies that by the early 1980s were supplying nearly 23 percent of NHF’s funding, according to the organization’s financial records. Starting two days before the Centers for Disease Control’s July 1982 public announcement that AIDS was killing hemophiliacs, the NHF began issuing the first of its patient alerts, medical bulletins, and newsletters that played down the risk of HIV. The first alert, sent to NHF chapters and hemophilia treatment centers nationwide, said the risk was “minimal” and that the CDC “is not advising a change in treatment regimen at this time.”1 A year later, the summer 1983 issue of Hemophilia Newsnotes, the NHF’s annual meeting preview, included an article on page 2, highlighted in a ALL FOR BUSINESS 81 box, that began with the headline, “NHF Urges Clotting Factor Use Be Maintained.” The NHF was concerned, the article said, that reported reductions in clotting-factor sales meant that people weren’t using as much product. This was “an inappropriate response” and hemophiliacs should “maintain the use of clotting factor.” It quoted the NHF medical codirector, Dr. Louis Aledort, as saying that “the risks of not treating exceed the risk of contracting AIDS,” and reminding everyone that uncontrolled bleeding was their leading cause of death and serious orthopedic complications.2 In another article from the same issue, the NHF announced that the Food and Drug Administration had recently approved the sale of the first heat-treated Factor VIII, but the article seemed to downplay it for use in patients who already had been “heavily exposed” to unheated products. It did recommend the heated product, produced by Hyland, for infants and others who “have had relatively little exposure to concentrates,” a clear indication that the NHF understood it was too late to protect older users.3 It was a dilemma. By this point, some doctors, but not many, were telling their patients to revert to cryoprecipitate. Ultimately, the NHF would be added as a class-action defendant, not just because of its view of the science but because of its decisions on legal issues as well. A key document was a resolution adopted by the NHF board of directors in October 1985 in which the group—with wording suggested in part by Duncan Barr, the national counsel for Bayer and its Cutter division—opposed a potential class action filed in California, in a case called Gannon v. Cutter. The resolution said the class action “would not be in the best interests of persons with hemophilia.” Barr was invited to speak at an NHF meeting, but the lawyer for plaintiff Kathleen Gannon, widow of a dead hemophiliac, was not. She lost her case.4 Later in the 1980s, when people with hemophilia began to die from AIDS, two former NHF medical directors and some doctors who served on its medical advisory committee testified against patients who sued the drug companies. When the NHF was asked its position on lawsuits against the drug manufacturers, its then-president wrote that he considered the companies to be “constituents” and “family members.” The anger of the hemophilia community was also directed at prominent hematologists who, like the NHF, had seemed to develop too-cozy BLOOD ON THEIR HANDS 82 ties to the manufacturers. It was not unusual for doctors who served on the foundation’s medical advisory committee to be paid by the companies for conducting clinical trials, or as consultants or speakers. Several of those doctors became expert witnesses for the industry, testifying against their patients. Their defense of the companies was based upon two primary arguments. First, most severe hemophiliacs were probably infected long before anyone knew about HIV. Second, at that...


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MARC Record
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