Getting seizures medications is one of the biggest problems for many people. Some people may not have insurance coverage and can’t afford the full or partial cost of a medicine. Others may have trouble getting the drug from their pharmacy. People with uncontrolled seizures can’t drive or get to the pharmacy on time. They may depend on others to pick up their pills or use mail-order pharmacies. Getting pills delivered by mail sounds like a great idea, but there can be many problems with this option too.

Are mail order pharmacies really better to use than a local pharmacy?

Many insurance companies are asking or requiring people to get their medicines from a mail order pharmacy.  Insurance companies say that this saves money. They prefer to have people get at least a 90 day supply at one time. However, there are often strict rules about what medicines can be given, how much can be given, where a medicine can be mailed, and how long it takes to be refilled or delivered.

  • Getting medicines by mail may be a good idea for people who don’t drive, who live alone or and who are on stable doses of medicines.
  • Local pharmacies may be a better idea for people who are just starting a medicine, going through medicine changes, or having frequent seizures.
    • If you are going through medicine changes, you’ll likely need refills sooner than 90 days given by a mail-order pharmacy.
    • If your dose is being increased, you may not have time to wait for more pills by mail before the next dosage change is made.
    • If you have an emergency or medicines are changed unexpectedly, you won’t have time to wait and use the mail order process.

What should I know about using a mail order pharmacy?

  • Make sure you have a mailing address where medicine can be shipped. A post office address may not be able to accept medications by mail.
  • Check your pills when they arrive by mail. Did they send you all your pills and the right amount of each one? 
  • Mark on your calendar when you should call for your next refill. Generally plan on ordering at least 2 weeks before you run out of medicines.
  • Call your insurance company if they will not refill your pills enough in advance. Some plans have rules that make people use a certain amount of their prescription before it can be refilled. However, if your dose has changed, you may be using the pills faster than originally planned.
  • Mail order or online pharmacies usually have toll free 1-800 numbers to call if you have questions. Keep the number handy and use it!  Keep track of when you call and who you talk to in case you have problems in the future.
  • Try ordering refills online at a website or by email. Check the rules from the insurance company and mail-order pharmacy first. Make sure the websites are secure before putting in your personal information.  When using online refill services, always check that your order was received and sent to you. 
  • When looking for a mail order or online pharmacy,
  • Have a backup plan if your refill shipment is late. Do not skip your medication doses! Even a few doses or days of missing seizure medications can cause breakthrough seizures or seizure emergencies that can be life-threatening!
    • Call the doctor’s office and ask for a “bridge” refill from a local pharmacy. This may help last until the mail order refill arrives.  In most places, insurance companies and pharmacies must give people at least a few days supply of medicine to people who have life-threatening health problems.
    • As a last resort, if there is no local pharmacy available to help, go to your emergency room.  They may be able to give you a few days supply of medicine. Be aware that you may be charged a copay for the emergency room visit by your insurance company.
    • Your Epilepsy Foundation affiliate may be able to help getting seizure medicines. Call the Epilepsy Foundation’s toll free help line at 1-800-332-1000 or find a local affiliate online. 

How can I afford my seizure medicine if it’s not covered by my insurance or if I have no insurance?

  • Call your doctor’s office first and see if there is a nurse or social worker who knows about epilepsy and help for medications. It can be a confusing process so use people who know about it to help!
  • If you have insurance, the doctor or nurse may be able to help you file an appeal or seek prior authorization for you to have this medication.         Some insurance companies try to limit the choices of medicines available, want people to try a generic form first, or limit the number of quantity of medicine that you can get.
    • A prior authorization may be needed to explain why you need the medicine, why a generic medicine may not be right for you, or why you need a certain quantity of drug.
    • Ask for help early! Allow a few weeks or more for the doctor’s office to complete the prior authorization process. Sometimes it can be done on an emergency basis, but not all the time.
  • Call your Epilepsy Foundation affiliate to see if they have a medication assistance program.
  • Visit the Partnership for Prescription Assistance Program to find out what programs may work for you.
  • Other online resources for getting seizure medicines at no or low cost are include, but are not limited to:
  • Call the manufacturer of your seizure medicine. They often have patient assistance programs that can send you free or low cost medications. These programs are usually listed in the online resources given above. But you may need to call the manufacturer directly for more info or to apply for their program.
    • Some companies arrange for you to pick up the medicine at a local pharmacy. Others will have the drug shipped directly to you or your doctor's office.
  • When you use a patient assistance program, follow the same tips listed under mail order pharmacies.
    • Call early when you need a refill.
    • Make sure you have a back-up supply of medicine in case you run out early or before your medicine arrives.
    • Know what to do if your back-up supply runs out and how to get an emergency supply of medicine.

Contributors: Peter Bridgman, MD, Robert Fisher, M.D., Ph.D., Patricia O. Shafer RN, MN, Joseph I. Sirven MD.

Revised: August 3, 2013

Authored Date: 
Tuesday, November 5, 2013