Opinion: The Access to Rare Indications Act could be a game changer for millions of Americans
The term “medically necessary” is the yardstick by which insurance companies, including Medicare and Medicaid, decide if they will pay for a particular treatment. For the millions of Americans living with rare diseases, most of which do not have FDA-approved treatments, identifying a treatment as medically necessary can be a lifeline — or the end of the line.
A white paper released in April by the influential Institute for Clinical and Economic Review offers several misguided proposals that attempt to balance public interest in incentivizing innovation with payer cost containment goals in rare diseases. The proposals are unlikely to benefit people living with rare diseases, clinicians like us who care for them, or those trying to bring rare treatments to market.
