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Seizure medicines: what to ask, and what they cost

We are a data project, not a clinic. This page does not explain how seizure medicines work or tell you what to take. For that, use the sources at the bottom of this page, written by clinicians. What we can tell you is what these medicines cost in Minnesota, what the state's own data shows, and what to ask the person who prescribes them.

Who decides

Only your prescriber can answer whether a medicine is right for you, what dose, or what to do about a side effect. Never stop or change a seizure medicine on your own. Stopping suddenly can cause a seizure or worse. If something frightens you, call the clinic today.

What we found about cost in Minnesota

These are our own numbers, from public data, with the working shown.

What the data shows Source
Minnesotans on commercial insurance paid $18.48 out of pocket per prescription fill in 2022, against $9.30 on Medicare and $1.31 on Medical Assistance Minnesota All Payer Claims Database
For the costliest drugs, the median fill costs the member nothing and the average is $96 to $267, which is the deductible pattern Same
Across a year, commercial members taking fenfluramine paid about $1,822, eslicarbazepine $1,460, cannabidiol $1,073 Same, small numbers of people
Six seizure medicines have no generic at all. They are 1.5 percent of Minnesota Medicaid prescriptions and 32 percent of the spending CMS Medicaid data and the FDA Orange Book
A month of generic clobazam costs a pharmacy about $15. The brand, Onfi, costs about $1,795 CMS national drug acquisition cost
Manufacturers have reported 50 price increases on seizure drugs to the state since 2022. Sabril rose about 15 percent in a year, to $20,182 a bottle Minnesota drug price transparency reporting

Full methods and files: medication access.

What to ask at the appointment

Take these written down. Appointments are short and it is hard to think of them afterwards.

  1. What are we hoping this medicine does, and when will we know if it is working?
  2. What side effects are ordinary, and which ones mean I should call you the same day?
  3. Do I need rescue medicine, and if so who can give it and when?
  4. Does this interact with anything else I take, including birth control?
  5. If I am told to stay on one manufacturer's version, please write that on the prescription.
  6. What do I do if I miss a dose?
  7. If this one does not work, what is the next step, and when do we decide?

If cost is the problem

  • Ask the prescriber whether a generic or a different drug in the same class would work. That question is theirs to answer, not the pharmacy's.
  • Ask the pharmacy to run it through insurance before you leave, so a surprise happens while someone can still help.
  • Minnesota pharmacists can dispense an emergency supply in some situations, and Medical Assistance has its own 72 hour rule. Details and what to do about a denial: paying for epilepsy care.
  • Work through it step by step: pharmacy problem solver.

Where to read about the medicines themselves

These are written and reviewed by clinicians. We link to them rather than rewriting them.

What this page is

EDAN is a student-led data and advocacy project. We publish what public data says about epilepsy in Minnesota. We do not give medical advice and we do not review clinical guidance. If you find an error in our numbers, write to edanmnorg@gmail.com and we will fix it and say that we did.