My daughter and I are two of more than 220,000 Floridians living with epilepsy, and I’ve served as a resource to our local epilepsy community helping to wade through the red tape to ensure people receive the medicine they need to have the best quality of life. What many people might not know is that  up to 70% of people living with epilepsy can become seizure-free with access to antiseizure medicines and an often extensive trial-and-error process to find the medications that work best for each person.

Unfortunately, anti-patient policies practiced by health insurance companies and health care middlemen known as pharmacy benefit managers (PBMs) impose unnecessary access and affordability barriers for epilepsy patients – things like fail first or step therapy requirement, prior authorization, and pocketing billions in discounts without passing savings onto patients.

Many patients benefit from copay coupons and copay assistance, which often come in the form of discounts from drug manufacturers and charitable organizations to help patients afford their medicine. But for patients whose  insurance plans contain a copay accumulator which according to studies, more than 90% do, insurers and PBMs don’t  count the assistance towards a patients deductible – forcing the patient to pay additional expenses out of their own pocket, even though the insurer has already received payment from another source.

In other words, insurance companies and PBMs have created a pathway to double dip from the pockets of patients.

For example, my daughter takes a single antiseizure medicine, which significantly reduces seizures. However, this medicine alone, which she has been using successfully for more than a decade, costs almost $1,500 a month. If we used a $1,000 copay coupon from the drug manufacturer, we would only pay $500 at the counter. But, on a plan with a copay accumulator, only $500 would count toward our health insurance deductible/out-of-pocket maximum – even though the insurer and PBM received a total of $1,500 each month.

As someone who has spent years navigating the system from my volunteer work with the Epilepsy Agency of the Big Bend and previous career at the Florida Department of Health, this is an issue with an easy fix that would have a substantial impact on patients. Copay accumulator programs dramatically diminish patients’ ability to reach their deductibles/out-of-pocket maximums, and greatly impact patients living with inherited chronic conditions such as epilepsy, cystic fibrosis, hemophilia etc.

I’m encouraged by the dialogue at both the federal and state-levels to address affordability while ensuring access and innovation, but we must start by directly lowering out-of-pocket costs for patients.  Here in Florida, State Senator Tom Wright introduced Senate Bill 46 for the 2023 Legislation Session to end copay accumulator programs as 16 states nationwide review similar legislation to ensure that copay assistance – regardless of its form – is contributed toward patient’s deductibles/out-of-pocket maximums.

Please join me in encouraging our state and federal lawmakers to support patient-first policies like Senate Bill 46 in Florida, and the HELP Copays Act in Congress, to make life saving medicine accessible and affordable to Florida’s patients.

Nicole Hill is a patient advocate and volunteer with the Epilepsy Association of the Big Bend. 


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Source:, Nicole Hill