Paying for & managing medication

For most people living with epilepsy, anti-seizure medication (ASM) is the core of treatment, and it works best when taken every day, exactly as prescribed. That is easier said than done. Managing medication really means managing four things at once: affording it, refilling it before it runs out, remembering every dose, and handling side effects. The resources on this page take on each of those, one at a time.

Cost is one of the most common barriers, and there is more help available than many families realize. The Epilepsy Foundation's advice is to start by telling your doctor or nurse if your medicine is too expensive — they often know about assistance options, and sometimes the office itself can help. Beyond that, programs like GoodRx (free discount coupons, no insurance needed), RxAssist, drug-company patient assistance programs, and the nonprofit NeedyMeds can lower prices. If insurance is the problem, you have more rights than you may think: you can ask your pharmacist to request a one-time refill when coverage changes, use your plan's "exceptions process" to request a medicine that is not on the approved list, and appeal if the plan says no. The Epilepsy Foundation's 24/7 Helpline (1-800-332-1000, or 1-866-748-8008 en Español) can walk you through these steps.

Missed doses matter. The Epilepsy Foundation cautions that skipping doses, or stopping or changing a medicine on your own, can lead to more seizures or more severe ones — so if something is getting in the way, the answer is to solve the barrier, not to go without. The flyers here are full of practical fixes: pairing doses with a daily routine like brushing teeth, using a pillbox or phone alarm, posting notes where you will see them, and planning ahead for travel. For refills, the Epilepsy Foundation suggests asking about 90-day supplies or mail-order pharmacy, signing up for auto-refills, and calling your pharmacy or doctor at least 5-7 days before you run out, since stock issues or insurance approvals can add delays.

Side effects are the other big reason people struggle with medication. Any anti-seizure medicine can cause them, most often in the first months on a new medicine or after a dose change. Common ones — tiredness, upset stomach, dizziness, and changes in mood, memory, or concentration — are often mild and improve with time, and the Epilepsy Foundation notes that most people do not have major side effects. But side effects that make daily life hard are worth reporting: your care team can often lower the dose or switch medicines. The key message from every one of these resources is the same — never stop your medicine on your own; call your doctor or nurse and ask for help.

The materials below are free, printable flyers from the Epilepsy Foundation, plus the NeedyMeds website. Two of them — the "barriers to adherence" checklists for patients and caregivers — are designed to be filled out and brought to your next appointment, so your care team knows exactly what is getting in the way. Spanish versions of the medication-cost and medication-reminder flyers are included.