Joyce and Nickel Seek to Alter Inflation Act for Rare Disease Research

TL/DR –

Reps. John Joyce (R-Pa.) and Wiley Nickel (D-N.C.) are pushing to pass the ORPHAN Cures Act, a bill that seeks to amend the Inflation Reduction Act (IRA) to protect research into treatments for rare diseases. The Act would ensure that orphan drugs, which treat rare diseases and would not be developed without government assistance, are excluded from Medicare price negotiations. The bill has bipartisan support and would change the language in the IRA to exclude drugs that treat “one or more rare diseases or conditions.”

Reps. John Joyce and Wiley Nickel Advocate for Changes to Inflation Reduction Act for Rare Diseases Treatments

Reps. John Joyce (R-Pa.) and Wiley Nickel (D-N.C.) explained on Thursday their motivation behind the push to pass their bill that aims to modify the Inflation Reduction Act (IRA). The Congressmen stated that the ORPHAN Cures Act is vital for the continuation of research into treatments for rare diseases.

During The Hill’s event “Science & Policy, The Future of Cancer Care,” sponsored by AstraZeneca, Joyce and Nickel shed light on the implications of the ORPHAN Cures Act. If enacted, this legislation would adjust the IRA to guarantee that orphan drugs remain exempt from Medicare price negotiations.

Orphan drugs, designed to treat rare diseases, often lack financial backing for development without government aid. The existing IRA already exempts orphan drugs from Medicare negotiation, but this exception only covers medication that treats a single disease. Orphan drugs can lose this status if approved to treat another condition.

The ORPHAN Cures Act aims to revise the IRA’s language, ensuring drugs that treat “one or more rare diseases or conditions” are excluded. The bill enjoys bipartisan support, with Joyce emphasizing to The Hill’s Editor-in-Chief Bob Cusack that passing the bill is crucial since “maybe rare diseases aren’t that rare.”

“A rare disease affects 200,000 or fewer Americans,” Joyce clarified. These “rare diseases” include commonly recognized conditions such as sickle cell disease, Duchenne muscular dystrophy, and all childhood cancers.

Nickel further outlined the necessity of tweaking the IRA. He criticized the hastily passed Inflation Reduction Act for potentially disincentivizing research into rare diseases. Nickel concluded by stressing the importance of tuning up the IRA to better serve everyone.

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