For years, Kelly VanSingel’s 30-year-old brother Jay controlled his epileptic seizures with an antiepileptic drug (AED). One day when Jay was filling his AED prescription, he noticed that the pills looked different. He asked his pharmacist about the new pills, who informed Jay that the new pills were a safe, generic version of his regular medication for seizures. Two days later, Jay was dead. An autopsy confirmed that Jay had died as a result of a seizure.

VanSingel recently shared her testimony to the Michigan legislature, and it is told again in a recently-released Consumer Survey Report by the Epilepsy Foundation. The organization prepared the survey of more than 1,000 consumers to document an increased risk of seizures and side effects when those consumers switched from one manufacturer’s formulation of an AED to another.

The switches documented included those between different manufacturers’ versions of the same generic drug, from a generic to the brand-name drug, and from the brand-name drug to a generic. The Foundation’s survey “tells the stories that too many individuals have experienced, and supports other newly published studies documenting that switching can cause breakthrough seizures and severe, unexpected side effects.”

Generic drugs save consumers an estimated $8 to $10 billion a year at retail pharmacies because they cost less than brand name versions of the same product. Epileptics are often faced with staggering pharmaceutical costs, and the Foundation supports generic drugs for this reason. However, medication switching is a “major concern” among the epileptic community, in particular when seizures are managed with one drug and then that person switches to a generic “equivalent.”

“Seizures are serious events that can have considerable cost to one’s health, well-being, and pocketbook – and can even be life threatening for the person experiencing the seizure, or because that person accidentally injures someone else during the seizure,” the Foundation’s website states. “As is being shown in related studies, the cost savings in the less expensive medications may be lost when overall health costs and societal consequences are taken into account for those patients who experience breakthrough seizures or troublesome side effects when switched from their usual seizure medicine.”

The Epilepsy Foundation is writing to major insurance companies sharing data from its Consumer Survey, asking them not to require patients on brand name AEDs to switch to a generic and to eliminate any cost differential between brand and generic AEDs for people with epilepsy.

To date, Blue Cross and Blue Shield of Alabama, Humana, Blue Cross and Blue Shield of Arizona, Regence, Blue Cross of Idaho, WellPoint, Health Net, and Wellmark have all agreed to no cost difference between brand and generic AEDs. In addition, Aetna and Amerigroup have agreed to offer their customers a no cost difference if the physician indicates “medically necessary” on the prescription.

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