American voters overwhelmingly support the ORPHAN Cures Act to amend the Inflation Reduction Act (IRA) and incentivize developing treatments for rare diseases, finds a recent poll commissioned by BIO.
Why it matters: The Inflation Reduction Act exempts orphan drugs for rare diseases from price controls—but only if they treat a single indication. But of the more than 280 orphan drugs approved since 2003, nearly a quarter were approved for additional indications.
The ORPHAN Cures Act would amend IRA, exempting rare disease treatments that address multiple indications. This would incentivize R&D for new cures.
The public favors orphan drug support, according to a BIO-sponsored Morning Consult poll, sampling 1,990 registered voters between Nov. 23- 25.
The key findings:
- 94% of respondents say rare disease R&D is important, and 4 in 5 say incentives for rare disease treatments should be a critical policy priority.
- A majority favors prioritizing legislation to encourage experimentation related to rare disease treatments—specifically treatments for multiple indications.
- 67% want their congressional representative to vote for the ORPHAN Cures Act.
- “Support for government action on rare disease research is bipartisan.”
BIO’s view: “Right now, 95% of rare diseases have no FDA-approved treatment. As this poll shows, Americans want lawmakers to incentivize the scientific pursuit of these much-needed treatments,” says BIO’s interim CEO Rachel King.
Read and share the poll results.
More Health News:
CNBC: U.S. poised to approve first gene-editing treatment in breakthrough for sickle cell patients
“U.S. regulators are expected to approve exa-cel for use in sickle cell patients by the end of this week. The U.K. approved it under the brand name Casgevy last month. … Approval of exa-cel by the U.S. Food and Drug Administration would mark a scientific milestone about a decade after the discovery of CRISPR and a breakthrough for patients desperate for a better option.”
Colorado Politics (Opinion): New drug board spells trouble for rural Colorado
“In August, the [Prescription Drug Affordability Board] announced the first five drugs it will target. In theory, the board’s goal is to make expensive medicines more accessible. But though that can create great headlines for some politicians, the concern in rural areas is it could impose even more obstacles to access to lifesaving medicines,” writes Colorado State Senator Barb Kirkmeyer, from District 23.
