The OPEN Act would provide incentives for drug makers to repurpose mainstream treatments, at mainstream prices, for rare diseases.

WASHINGTON, DC – In honor of Rare Disease Day today (Feb. 28), U.S. Rep. Gus Bilirakis, R-Tarpon Springs, introduced the Orphan Product Extensions Now Accelerating Cures and Treatments Act to help open the door to potentially hundreds of new treatments for rare diseases.

“The OPEN Act would help make sure those suffering from a rare condition can finally find safe, effective, and affordable medication. I was inspired to write the OPEN Act after meeting with folks who live with rare diseases, like Ashleigh Pike, Candace Lerman, and Kelly Freeman from Florida,” Bilirakis said. “The ideas that shaped this legislation came from those who it will help most—rare disease patients. After all, rare diseases are not a rare problem.”

There are 7,000 rare diseases affecting 30 million Americans, and yet 95 percent of those conditions have no approved treatment or cure, he said. The problem is that each rare disease impacts a small patient population, leaving little incentive for drug makers to run additional trials and bring major market drugs into rare disease markets. The OPEN Act would provide incentives for drug makers to repurpose mainstream treatments, at mainstream prices, for rare diseases.

More than 150 rare disease patient advocacy groups support the OPEN Act, including the EveryLife Foundation, the RASopathies Network, the Pediatric Cancer Foundation, and more.

Bilirakis represents Congressional District 12, which covers portions of Pinellas, Pasco and Hillsborough counties.

For information about Bilirakis, go to bilirakis.house.gov.

Gus Bilirakis | OPEN Act | Health Care | Rare Diseases | Tampa Bay Reporter

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