hemophilia

Copay accumulators keep assistance from drug manufacturers from counting towards a patient's deductible.
The Aids Institute

Lauren Killgore first learned about her health insurance company’s new policy at the beginning of 2017, when her husband, a 26-year-old hemophiliac, had an internal bleed in his knee. 

When Landon Morris was diagnosed with hemophilia shortly after birth, his mother, Jessica Morris, was devastated. "It was like having your dreams — all the dreams you imagined for your child — just kind of disappear," she recalled.

Hemophilia, a rare bleeding disorder caused by a gene mutation that prevents blood from clotting properly, is typically passed from mother to son. Morris' grandfather had it, and she remembered hearing how painful it was. "It was almost like he was bubble-wrapped," she said. "He was coddled, because his mom didn't want him to get hurt."

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.