, Columnist
No Miracle Drug Should Cost $2.1 Million
Congress helped create the ‘orphan drug’ problem and can fix it by demanding that prices reflect benefits.
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The day, long anticipated, when America’s system of voluntary drug pricing could break down has now arrived. Novartis has announced it will charge $2.1 million for Zolgensma, a gene therapy for infants with lethal spinal muscular atrophy.
The seeds of this extraordinary price were sewn in 1983, when Congress passed the Orphan Drug Act, a well-meaning law designed to encourage research into rare diseases. It offered drug makers tax breaks and other incentives for such work, rapid review by the Food and Drug Administration, a lower bar for market approval, and longer protection from competition.