For two years, Becky Mourey pushed the Food and Drug Administration to approve an experimental drug for her Lou Gehrig’s disease. She went to members of Congress and regulators to make the case for Relyvrio, until the patient-advocates won. In September, Relyvrio became only the third drug approved in the U.S. for ALS, or amyotrophic lateral sclerosis, an incurable neurodegenerative disease that is usually fatal within five years. But patients and physicians who celebrated Relyvrio’s approval months ago are now contending with the obstacles posed by the U.S. health system. Their odyssey is an object lesson in the soaring cost of specialty drugs, and the byzantine systems insurers that have created to try and control them.
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In September, Relyvrio became only the third drug approved in the U.S. for ALS, or amyotrophic lateral sclerosis, an incurable neurodegenerative disease that is usually fatal within five years. But patients and physicians who celebrated Relyvrio s approval several months ago are now contending with the obstacles posed by the U.S. health-care system.