Yes, Florida Is a Purple State

Purple has been associated with epilepsy since the creation of Purple Day in 2008, established by eight-year-old Cassidy Megan. From Canada, Cassidy has epilepsy and wanted to raise awareness about it. She chose purple because lavender is recognized as the international flower of epilepsy.  Just in time for Purple Day 2024, which is March 26^th, Florida made headlines this month with an inspiring update on the state’s epilepsy-funding front. Apparently, this year Governor DeSantis and both legislative chambers included recurring funding in their budgets that would expand and stabilize epilepsy services, including patient assistance, case management, and public education.  In the past, these services were tied to the Seat Belt Infraction Trust Fund, whose revenue has decreased by 85% over the past 15 years. That funding reduction left Florida’s epilepsy service providers struggling to meet the needs of the 360,000 Floridians with epilepsy, including people like 51-year-old Willie from Fort Lauderdale.

Willie sought assistance from a local nonprofit, Epilepsy Alliance Florida, which offers comprehensive services to thousands of Floridians with epilepsy including case management, advocacy, and healthcare navigation. Willie’s seizures began at age 20, but even after a proper diagnosis and several different medication regimens, Willie had uncontrollable seizures. In addition to referring Willie to a new neurologist that found a successful medication combination, Epilepsy Alliance Florida helped Willie obtain the meds and provided education and information about how to deal with his epilepsy. This assistance increased Willie’s confidence, which ultimately led to employment opportunities.

The proposed changes to the upcoming Florida budget will help close the funding gap, so people like Willie can stay healthy and thrive. According to Steve Schale, board member of Epilepsy Alliance Florida, “for organizations… that provide services to people with epilepsy, [the budget update] means that we can now budget in a much more thoughtful way, not necessarily having to go back to the legislature every single year and beg them for one-time money to fill this gap.”

The Epilepsy Foundation of America (EFA) was around when I was diagnosed with epilepsy in 1972 at age six, but they were still relatively new. My parents weren’t aware of them and didn’t seek out additional help. Instead, they conferred with my neurologist who did his best to find a medication combination to stop the grand mal seizures I’d had that year. There was no such thing as an epileptologist, a neurologist who specializes in epilepsy. Accreditation for Epilepsy Centers that provide a more comprehensive approach to epilepsy had yet to be established.  While neurologists had legitimate expertise, they didn’t know as much about epilepsy as they do now. There was more trial, and error involved when choosing medication regimens.

I tried 14 different anti-seizure medications over the decades, which ultimately didn’t work until I had brain surgeries in 2014, an arduous journey I describe in my memoir, Seizing Control. Thanks to the proposed state budget changes, Floridians with epilepsy  hopefully won’t have such a challenging path, as they have access to organizations like Epilepsy Alliance Florida that can refer them to appropriate care providers.  Florida is also a trailblazer when it comes to advanced epilepsy treatment access, as there are 19 Epilepsy Centers there.

It’s worth noting that the two champions of Florida’s budget changes are both personally affected by epilepsy. Florida House Representative Jenna Persons-Mulicka’s stepson has epilepsy, and Florida Senator Ileana Garcia had the disorder as a child. While it’s great that Florida has two politicians who hold the power and the purse strings to push for stabilized epilepsy services funding, allocating funds for basic healthcare needs of those with epilepsy shouldn’t require a personal champion. These resources should be readily available in all fifty states, so that all 3.4 million Americans with epilepsy have easy access to the healthcare required to treat their condition.