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Floridians Affected By Rare Conditions Want Healthcare Improvements

The Oz Blog

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.

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.

Sarah Mueller is a journalist who has worked for media outlets in several states since 2010. She earned her bachelor’s degree in journalism in 2010 and worked as a print reporter covering local government and politics.