Anti-Epileptic Drug (AED) Shortages

There have been unprecedented shortages of anti-epileptic drugs (AEDs) over the past two years. Some of the drugs affected have been phenobarbital, ethosuximide (Zarontin), carbamazepine, phenytoin (Dilantin) and primidone. So far, there have been a much higher number of drug shortages among generic drugs than brand name drugs.

Shortages have varied from region to region, and even from pharmacy to pharmacy. Some people taking these medications have had difficulty getting their prescriptions refilled while other people have not been affected by the shortages. Some drugs, such as phenobarbital, were in short supply two years ago but there have been no recent reports of supply problems. Where as other drugs, such as ethosuximide (Zarontin 250 mg capsules), have been reported to be on backorder for an extended period of time.

Drug shortages are not only affecting epilepsy drugs but are also affecting anesthetic agents and drugs used to treat infections, psychiatric disorders, cardiovascular disease, cancer and other conditions. Other countries, including the United States, are experiencing record numbers of drug shortages too.

Shortages of drugs used to treat epilepsy can have life-threatening or life-altering consequences. This situation needs to be resolved so that people living with epilepsy in Canada are not at risk. You can help by contacting your Federal Member of Parliament. See below for more information.

Advice for People Living With Epilepsy
It is dangerous to suddenly stop taking an anti-epileptic drug (AED) or to reduce the dose of your medication without consulting your health care provider. The Epilepsy Support Centre advises people living with epilepsy to get their prescriptions refilled early.  Do not leave refills to the last minute . Contact your doctor or nurse practitioner if your epilepsy medication is not in stock at your pharmacy. 

Overview
Here is an overview of the situation related to anti-epileptic drug shortages:

1. In most cases there has been no advance warning. Health Canada does not require mandatory reporting from pharmaceutical companies in the event of a drug shortage.
   
2. Until recently there has been no system to notify pharmacists, physicians, nurse practitioners (NPs) and patients that a drug will be in short supply. Doctors and NPs only learn of supply issues when their patients are unable to get their prescription refilled.
   A "Multistakeholder Working Group on Drug Shortages" recently proposed some changes, including a plan to notify people of drug shortages by posting information online. 
   Improvements in information sharing when drug shortages are anticipated or during a drug shortage are welcomed, however, the current notification system has limitations and does not address the underlying problem.
   
3. Sudden discontinuation of an AED is potentially life-threatening for someone with epilepsy. There is a risk of status epilepticus when an epilepsy medication is stopped abruptly.
   
4. When a physician or nurse practitioner makes a medication change for a person with epilepsy, this is normally done gradually over many weeks so the person can be tapered off one drug and a new drug gradually introduced. The recent drug shortages have led to some people being switched "cold turkey" to a new AED.
   
5. Two of the AEDs that have been affected by these drug shortages are barbiturates. Sudden discontinuation of a barbiturate (e.g. phenobarbital, primidone) poses an even higher risk of life-threatening seizures (status epilepticus). Ironically, some people who were affected by the phenobarbital shortage in late 2009 were switched to primidone. Many of these people were confronted by a shortage of primidone during the past summer/fall. 
   
6. A person with well-controlled epilepsy may experience breakthrough seizures if they suddenly stop taking their AED. There is a risk that people whose seizures were previously well-controlled may not achieve seizure control with a different medication (if a substitution is made) or when they resume their regular AED (if/when it becomes available again).
   
7. Life-threatening seizures are the most serious concern. There are also other very important concerns for people with epilepsy if they experience breakthrough seizures, or a worsening of their seizure control, including injuries, accidents, loss of employment, loss of a driver's licence, financial hardship, and stress on their family and relationships.
   
8. These drug shortages have had economic costs as well for the health care system including increased emergency department visits, increased visits to physicians and nurse practitioners, and hospitalizations.
   
9. People with epilepsy have been left scrambling by this drug shortage problem, often with no way to find out why their drug is not available or when the drug will be available again.
   
   

1. Canadian Agency for Drugs and Technologies in Health (CADTH)
   Drug Supply Disruptions (March 2011)
   click here to download a PDF version of the CADTH report
2. Canadian Medical Association (CMA)
   Shortages of generic drugs plaguing MDs, CMA survey finds  (March 2011)
3. Canadian Pharmacists Association (CPhA)
   Drug Shortages Survey - FINAL REPORT    (December 2010)

Epilepsy Drug Shortages: What can you do to help?

1. Send a letter to your Federal Member of Parliament 

Canadians who are concerned about the recent drug shortages should contact their Federal Member of Parliament (MP).  There is a sample letter to a Member of Parliament below in 2 different formats. Click on the links below to download the files:

Word Document   *.doc

Printable file   *.pdf

Click here to find your MP using your postal code.

There is no charge to mail a letter to a Member of Parliament. You do not need to put a stamp on the envelope. Sign your letter and make 3 copies. Send the letters to the following people:

original - Your Member of Parliament
copy 1 - The Hon. Leona Aglukkaq - Minister of Health
copy 2 - Ms. Libby Davies - Health Critic and Deputy Leader of the Official Opposition

copy 3 - The Hon. Hedy Fry - Liberal Health Critic

The mailing address is the same for each Member of Parliament: 
[Name of the MP]
House of Commons
Parliament Buildings
Ottawa, ON  K1A 0A6

Sending a letter by Email
Click here to find your MP using your postal code. Enter your postal code and click "SEARCH". When the search is complete, scroll down the page to find the email address for your Member of Parliament.

Attach a copy of your letter to the email you are sending to your Member of Parliament. Copy the following three people on your correspondence by entering their email addresses in the "Cc:" line: 

The Hon. Leona Aglukkaq <leona.aglukkaq@parl.gc.ca>, Ms. Libby Davies <libby.davies@parl.gc.ca>, The Hon. Hedy Fry <hedy.fry@parl.gc.ca>

2. Share your story with us

If you have experienced any problems getting your epilepsy medication due to these shortages, we would like to hear from you.

The Epilepsy Support Centre is collecting personal stories related to recent shortages of anti-epileptic drugs (AEDs) in order to document the implications that this situation is having on Canadians living with epilepsy.

We plan to share this information with the Best Medicines Coalition as they work to resolve this situation. We may also use these stories when we work with other epilepsy organizations to bring attention to the drug shortage situation. No names or contact information will be shared.

Please send your stories to:
Suzanne Nurse (Education Liaison, Epilepsy Support Centre)
Email:  education@epilepsysupport.ca
Fax: (519) 433-4079
Phone: (519) 433-4073

1) Name of drug: ______________________________
2) Description of how the drug shortage was dealt with (resolved or not).
3) How has this impacted you?

No names will be shared when we compile these personal stories. However, it may be helpful for the Epilepsy Support Centre to contact people in the future to obtain more information. The Epilepsy Support Centre may also contact some people in the future to ask if they would like to be interviewed.

If you would like to be contacted, please provide the following information:

Your Name:
Phone number:
Email: