America’s New Most Expensive Drug Reignites Debate Over How to Price Gene Therapies

  • Dec 08, 2022

    The FDA on Nov. 22 approved Hemgenix (etranacogene dezaparvovec-drlb), the first gene therapy for adults with hemophilia B, a genetic bleeding disorder. CSL Behring, the medication’s commercial rights holder, set a list price of $3.5 million, making it the most expensive drug in the U.S.

    That price exceeds the $2.96 million health benefit price threshold (HBPB) that the nonprofit Institute for Clinical and Economic Review (ICER) determined recently in an evidence report, meaning it is not fairly priced according to the nonprofit’s guidelines.

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  • Tim Casey

    Tim has worked as a reporter and editor for more than 20 years. Before joining AIS Health in December 2021, he was a business reporter covering the commercial real estate industry’s capital markets for four years. He previously covered health care business issues for two medical publishing companies and high school, college and professional sports for the Sacramento Bee newspaper. Tim has a B.A. in Psychology from the University of Notre Dame and an M.B.A. from Georgetown University.

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