Epilepsy Drug Shortage Leaves Thousands Scrambling; Solutions Must Be Found, Says Canadian Epilepsy Alliance
Thousands of Canadians have been left scrambling as a shortage of a common antiseizure medication shows just how vulnerable people with epilepsy are to on-going disruptions in drug supplies.
Clobazam, a medication used to control seizures in people with epilepsy, is in shortage across Canada. The clobazam shortage started in 2015 and reached a crisis level this spring. New, limited supplies are only now working through distribution channels.
“People’s lives are at risk and this constant parade of drug shortages needs to come to an end,” said Canadian Epilepsy Alliance President Deirdre Floyd.
There are over three hundred thousand people living with epilepsy in Canada and antiseizure medication is the main treatment for this serious but common neurological disease. Stopping an antiseizure medication cold-turkey can have catastrophic effects, including a sudden increase in seizures, hospitalization, or even death. A sudden discontinuation of a drug like clobazam is especially dangerous as there is an additional risk of life-threatening complications due to benzodiazepine withdrawal.
New Brunswick resident Mistie Delorey, whose son Cameron takes clobazam, was forced to contact multiple pharmacies as Cameron’s supply was dwindling. Eventually she located a refill at a local hospital, with the assistance of CEA Drug Shortage Chair Suzanne Nurse, only days before the prescription ran out.
“We were in a panic,” said Delorey. “We knew how serious it would be if Cameron didn’t get his prescription refilled.”
“Sadly, too many people across the country have run into this kind of desperate situation,” said Nurse. “If people cannot get an epilepsy medication it throws their lives into turmoil and can have devastating consequences.”
“Health Canada has been coordinating efforts this month to address the clobazam shortage,” said Nurse. “But epilepsy agencies are still hearing from people who cannot get their clobazam prescriptions refilled which is a serious concern. Health authorities need to be alerted to any continued supply problems.”
The Canadian Epilepsy Alliance urges people to contact their local epilepsy agency by calling 1-866-EPILEPSY (1-866-374-5377) if they have questions about the clobazam shortage. There is also management information for healthcare providers available from the Canadian League Against Epilepsy.
“This clobazam shortage isn’t an isolated case,” said Floyd. “People across Canada have been dealing with drug shortages for years and they are getting worse. This is the second major shortage of an epilepsy drug in 2016 alone. If these kinds of shortages continue I am genuinely afraid of what will happen.” “People living with epilepsy should have access to a safe, consistent and reliable drug supply,” says Nurse. “Long-term solutions must be found to prevent shortages of antiseizure medications in the future.”
The Canadian Epilepsy Alliance (CEA) is a Canada-wide network of grassroots organizations dedicated to the promotion of independence and quality of life for people with epilepsy and their families, through support services, information, advocacy, and public awareness.
For more information contact:
Drew Woodley
Director of Communications, Epilepsy Toronto
T: 416-964-9095 C: 416-579-5028
English and French speaking representatives are available for media interviews.
