Prescription Price Shock: The Struggle of Affording Epilepsy Medications Without Insurance

As I continue to dedicate 2023 to epilepsy advocacy, I believe it is imperative to discuss medications and insurance.

When I was first diagnosed with epilepsy and put on medication, I was blessed to have parents that worked for pharmaceutical companies and provided me with insurance. Like many disorders, it took a while to perfect my “cocktail” of medicines that would prevent my seizures and have minimal side effects. As my medications continued to shift, Lamictal XR was added to my regimen, a name brand anti-convulsant that finally helped control my seizures!

Unfortunately, on March 22, 2019, I turned 26 and my parents’ insurance turned off. For those unfamiliar with this law, in 2010 the Affordable Care Act extended the age that young adults can remain on a parent's insurance plan to 26. Prior to ACA adjustments, many insurance companies removed young adults from their parents’ policies at age 19, leaving them uninsured and unable to afford insurance in the midst of college. While some define adulthood as being able to vote, drink, or rent a car, I think there is a strong argument for the year you start covering your own insurance.

By 26, I was already 5 years seizure free, past EEGs and stays at the EMU and on a steady drug schedule. I was lucky I had a job with great insurance, but even so, I still faced the problem of being on a name brand drug. Without insurance a 90-day prescription of Lamictal XR is $7,263, nearly $30,000 annually.

Luckily, improvements have been made to generic medications in just the last 10 years. Due to prescription drug costs, switching to the generic, Lamotrigine ER, has been a topic of conversation with my epileptologist for years. When discussing the move just 5 years ago he said that I would need to increase my dose to account for variations in the drugs. Now the medications are 1:1 and as of April, the change was no longer a choice but a requirement for me due to prices.

I consider myself one of the very lucky people who is not only controlled but also employed and insured. Yearly care for an epilepsy patient can range from $10,000 to $48,000 and people with a history of epilepsy are shown to have a lower annual household income and are more likely to be unemployed.

When I shared my epilepsy journey in January many responses involved “I never knew,” and rightfully so. During the first 9 years, that was the perception I was going for – that nothing was wrong. Life is different behind closed doors. Perhaps a person can’t drive because they have uncontrolled seizures, making it difficult to maintain even a basic job, thus losing their insurance and income, taking away access to medications and ultimately leading to more seizures. It’s an endless cycle until someone steps in to help.

Empowering Epilepsy is that someone, whose goal is to create and maintain a caring community that empowers people with epilepsy and their families to proactively manage their seizures and take charge of their lives. #SeizeTheDay #empoweringepilepsy

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