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AHCA Wants More Hemophilia Drug Vendors

Leon County Judge John Cooper on June 30, 2022, in a screen grab from The Florida Channel.
The Florida Channel
Drugs like these can cost more than $130,000 per year for patients with hemophilia.

Hemophiliac patients participating in the Medicaid program could have more options for treatment in Florida this year. 

The Florida Agency for Health Care Administration wants the federal government to allow three companies to provide care for patients with the rare blood-clotting disorder. 

While hemophilia is rare, treating it is expensive: an average of more than $130,000 a year for each patient. There are just 183 patients on Medicaid with hemophilia, but treatments for those 183 patients cost $24 million.

Florida wants the federal government to allow three vendors. That way, the state says it will be able to get the highest quality, lowest-cost vendor.

Joseph Burke is a 36-year-old hemophiliac living in Clermont. He said companies often try to get him on new treatments.

“It’s crazy just how they try to woo you in and get you on their product,” Burke said. “Once they have you in, it’s kinda like they got the golden ticket.”

Burke said his drugs cost roughly $30,000 per month. 

AHCA is asking residents for input about their request at meetings today in Tallahassee and Thursday in Tampa. 

Tuesday, January 19, 2016 from 2 p.m. to 4 p.m.
Location: Agency for Health Care Administration

2727 Mahan Drive Building 3, Conference Room, Tallahassee, FL 32308

Conference Line: 1-888-670-3525; Participant Code: 371 527 4100#

Thursday, January 21, 2016 from 1:00 p.m. – 2:30 p.m.

Location: Agency for Health Care Administration

6800 North Dale Mabry Highway, Suite 220, Main Training Room, Tampa, FL 33614

Conference Line: 1-877-299-4502; Participant Code: 639 773 84#

Abe Aboraya is a reporter for WMFEin Orlando. WMFE is a partner with Health News Florida, which receives support from the Corporation for Public Broadcasting.

Health News Florida reporter Abe Aboraya works for WMFE in Orlando. He 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 worked as a reporter for the Orlando Business Journal. He comes from a family of health care workers.