Tonko Rare Disease Bill Advances Out of HouseConstituent-inspired legislation brings scientists and doctors with direct expertise into FDA review process for new treatments
Washington,
June 9, 2022
WASHINGTON, DC—Congressman Paul D. Tonko announced that his Helping Experts Accelerate Rare Treatments (HEART) Act passed out of the House last night under H.R. 7667, the Food and Drug Amendments Act. Tonko’s legislation strengthens the U.S. Food and Drug Administration (FDA) review process for drugs that treat rare and ultra-rare diseases by directly involving scientists and doctors with expertise throughout the review process. “Accelerating and strengthening the process of reviewing treatments for rare diseases would offer life changing access to the millions of Americans and their loved ones living with rare and ultra-rare diseases,” Congressman Tonko said. “For years I’ve pushed for this legislation to ensure expert and patient perspectives are at the forefront of the FDA’s review process. These common-sense measures will provide invaluable insight and hope of new, effective treatments. I urge the Senate to pass this bipartisan legislation without delay.” Tonko was inspired to introduce this legislation through his work with Melissa Goetz, constituent and Co-President of The Familial Chylomicronemia Syndrome (FCS) Foundation, whose daughter is living with FCS. The HEART Act:
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