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Search results for "rare diseases" ...
In 1983, California congressman Henry Waxman helped pass the Orphan Drug Act to encourage research on rare diseases. The law offered financial incentives to drug makers in hopes they would tackle long-neglected disorders while breaking even or posting modest profits. Ever since, the Orphan Drug Act was lauded as government at its finest, praised for providing a boon in generating new pharmaceuticals. But by the act’s 30th anniversary, The Seattle Times found that the law’s good intentions had been subverted. In what amounts to a windfall, the pharmaceutical industry has exploited this once-obscure niche of the healthcare field, turning rare diseases into a multibillion dollar enterprise and the fastest-growing sector of America’s prescription-drug system. The series, “Pharma’s Windfall: The Mining of Rare Diseases,” uses extensive data from the FDA and NIH, along with financial reports from the SEC to show the financial incentives behind the system. For the human repercussions, the reporters found and told the stories of families struggling with rare disease.