Stories

The IRE Resource Center is a major research library containing more than 27,000 investigative stories.

Most of our stories are not available for download but can be easily ordered by contacting the Resource Center directly at 573-882-3364 or rescntr@ire.org where a researcher can help you pinpoint what you need.

Search results for "rare diseases" ...

  • Pharma’s Windfall: The Mining of 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.