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Sarah Jane Tribble

Lore Wilkinson’s medication for her rare muscle disease used to cost so little she paid for it without using insurance, but her most recent bill shows her insurer paid about $40,000 for a month’s supply. Wilkinson and many others with rare diseases across the country are getting caught in the crossfire of an ongoing legal debate over orphan drugs. | LIAM JAMES DOYLE FOR KHN

Battle over the ‘Orphan Drug’ program leaves patients’ pocketbooks at risk

Patients who depend on special drugs to treat rare diseases are caught in the crossfire between drugmakers and the FDA.
Feb 22