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Hemophilia costing Florida, feds $24M per year – for 183 patients

Drugs like these can cost more than $130,000 per year for patients with hemophilia.

Hemophilia is expensive, and state officials are looking for ways to save some cash.

Next week, the Florida Agency for Health Care Administration is holding the first of several public meeting on hemophilia for Medicaid patients. The state will be asking the federal government for permission to have three companies, not just one, provide treatments for hemophiliacs.

Hemophilia is an extremely rare blood clotting disorder; there are only about 1,000 people in Florida with the disease, according to the Hemophilia Foundation of Greater Florida. And there’s only 183 Floridians on Medicaid with the disease.

But those 183 patients cost state and federal officials more than $24 million annually. That’s an average of more than $130,000 every year per patient to get regular treatments that help them clot more normally. As the New York Times put it, hemophilia patients are courted by specialty pharmacies and drug manufacturers because they’re so lucrative.

“And there’s no generics for these drugs,” said Fran Haynes, the executive director of the Hemophilia Foundation of Greater Orlando.

The state’s plan is to expand out the number of companies who can provide treatments to see if they can get a better deal for taxpayers. Check here for more info on these meetings.


WMFE is a partner with Health News Florida, a statewide collaborative reporting on health care.

Health reporting on WMFE is supported in part by AdventHealth.

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Abe Aboraya

About Abe Aboraya

Health Reporter

Abe Aboraya started writing for newspapers in High School. After graduating from the University of Central Florida in 2007, he spent a year traveling and working as a freelance reporter for the Seattle Times and the Seattle Weekly, and working for local news websites in the San Francisco Bay area. Most recently Abe ... Read Full Bio »

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