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Floridians Affected By Rare Conditions Want Healthcare Improvements

The Oz Blog
The Florida Channel
Leon County Judge John Cooper on June 30, 2022, in a screen grab from The Florida Channel.

President Donald Trump wants to streamline the U.S. Food and Drug Administration so people with rare diseases can get medication faster. But one Florida resident says the state's government needs to make improvements too.

Tallahassee resident Fran Hokkanen is the mom to a toddler born with a rare genetic disease. Her daughter doesn’t produce Cortisol, a hormone most people produce when stressed. Hokkanen pays $50 a month out of pocket for the drug because it’s not covered by her insurance.

“As of two years ago, mine does not cover compounded prescriptions that are not really super expensive,” she said.

Credit The Oz Blog /
The Florida Channel

Hokkanen said Florida could do more to help people with rare disorders by increasing the number of diseases newborns are screened for. “It saves people’s lives by enacting things that that may seem trivial because they don’t affect millions and millions and millions of people and they don’t have a big dollar figure behind them and they don’t have Big Pharma behind them,” she said.

Hokkanen said Florida should follow other states by limiting out-of-pocket drug costs. She also wants Florida lawmakers to keep the rare disease community in mind when drafting laws.

The National Organization For Rare Disorders is urging the White House to hire more Food and Drug Administration experts to quickly review drugs for rare diseases.

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Sarah Mueller is the first recipient of the WFSU Media Capitol Reporting Fellowship. She’ll be covering the 2017 Florida legislative session and recently earned her master’s degree in Public Affairs Reporting at the University of Illinois Springfield. Sarah was part of the Illinois Statehouse press corps as an intern for NPR Illinois in 2016. When not working, she enjoys playing her yellow lab, watching documentaries and reading memoirs.