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Healthcare Debate: Leila’s Take on Managing the Cost of a Preexisting Condition

One of the factors that we don’t talk often about is the cost of living with epilepsy. Like with any long-term (some would say pre-existing) condition, epilepsy often requires regular doctor visits, testing, and daily medications. These things are essential to monitoring seizures and living well with epilepsy. But while essential, they are expensive and can wreak havoc on a family’s budget if they do not have healthcare coverage. 


The Cost of Epilepsy

I take 9 pills per day. To some, that’s a lot. To others, that’s nothing at all! Personally, it’s right in the middle of my highest and lowest amount ever. When I calculate the cost of each medication I take, I could be paying over $1000 per month for my medication to manage my epilepsy.


My neurologist’s office is about 2 hours from my home. There isn’t a better neurologist that is closer to me and she is in the same network as many of my other doctors, which allows each professional access to my medical records so they can treat me better. When I see her, I have to gas up my car, pay for parking at the office, and pay for the visit. Again, my insurance covers most of my visits with her. If not for this insurance, I would pay hundreds of dollars for a short visit with the most important member of my care team!


Between my EEGs and MRIs, I could pay thousands of dollars to pinpoint the problems with my epilepsy. We can, again, give a round of applause to my healthcare coverage for helping me manage this without draining my bank account.

Life without insurance

When all is said and done, if I had to manage my epilepsy without health insurance, I would be in debt up to my eyeballs. I’d have to pay more per month in healthcare costs than I earn. This would only add stress and increase my seizure count, resulting in more doctor visits and probably more testing. It’s a messy spiral effect that could never end. Unfortunately, epilepsy does not always stand alone. I, along with many others, have other “pre-existing conditions” that cost money to treat and can be deemed “high-risk” in healthcare terms. Like epilepsy, many of these are conditions that we didn’t ask for and certainly don’t choose to keep around to make our lives tougher. Limiting my ability to obtain treatment because of something I can’t control is immoral and puts my life at risk.


I’m thankful for the health insurance I’ve had over the years–both through employers and through the U.S. Government that has allowed me to manage my epilepsy while still living a normal life. I pray that I never have to give it up.

Follow Leila Shields:
Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania.

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