Rep. Bankson files bill to study rare brain disorder affecting older men

Republican state Rep. Doug Bankson last week filed House Bill 115 to create a five-member work group to gauge the scope, care, impact and outcomes for the rare brain disorder progressive supranuclear palsy among Floridians.

Bankson represents Winter Garden. Windermere representative, Republican state Rep. Carolina Amesty, who’s been dogged by controversies about unpaid bills and taxes and her family’s Christian university as well as funneling $3 million to a small Hispanic Chamber of Commerce, signed on as a co-introducer to the bill.

HB 115, now in the Healthcare Regulation Subcommittee, is the companion to Senate Bill 186, filed by Republican state Sen. Jason Brodeur, who represents Seminole County and part of Orange. Brodeur filed the bill, Florida Politics reported, after meeting with former state Rep. Bob Cortes whose father has the condition. The bill is named in honor of Cortes’ father: the Justo R. Cortes Progressive Supranuclear Palsy Act.

If the bills pass, Secretary of Healthcare Administration Jason Weida and Surgeon General Joseph Ladapo would form the work group. It would consist of healthcare professionals, advocates and caretakers and family members who care for those with progressive supranuclear palsy. Appointees would be named by Senate President Kathleen Passidomo, House Speaker Paul Renner. Ladapo would appoint the chair.

Progressive supranuclear palsy is a rare disorder that occurs when cells deteriorate in the part of the brain responsible for coordinating movement, vision, thinking, memory and mood. The Johns Hopkins Medicine website breaks down the disorder name: “progressive” indicates the condition will continue to get worse; “supranuclear” refers to the part of the brain affected by the condition — the section above two small nuclei; “palsy” refers to muscle weakness.

Physicians don’t fully understand what causes progressive supranuclear palsy. The condition affects one in 100,000 people over 60, mostly men. According to the Mayo Clinic the “only proven risk factor” is age. Twenty-seven percent of the more than 21.5 million people living in Florida are 60 or older, according to a 2021 report from the Bureau of Economic and Business research.

Diagnosis can be challenging because symptoms mimic other illnesses like Parkinson’s disease, Alzheimer’s disease, Creuzfeldt-Jakob disease, even an inner-ear infection. Two hallmarks of progressive supranuclear palsy are a loss of balance while walking — including a tendency to fall backwards — and an inability to focus the eyes where one wants to look, according to Mayo Clinic. There is no treatment, although symptoms may be managed with medications for other neurodegenerative diseases.

If formed, the work group will be tasked with developing a risk surveillance tool to identify those at higher risk for progressive supranuclear palsy as well as early detection in healthcare facilities.

"Because this bill came from one of my constituents, this issue is personal for me and the residents I represent," Bankson said in an email statement to VoxPopuli. "I am excited that this bill has received bipartisan support so far in the number of co-sponsors that have signed on from both sides of the aisle. This affects not only those afflicted with this little-known condition but also the caretakers that struggle, many times not understanding the underlying issues. With Florida’s aging population, this extends hope and dignity to those facing such challenges.”