Vancouver, February 10th 2015- Canadian Epilepsy Alliance members joined Federal Health Minister Rona Ambrose today as the Minister announced that Canadian pharmaceutical manufacturers will now be required to provide notice of shortages of their drugs. Currently the drug shortage notification is voluntary.
“This is a major step forward for people living with epilepsy, and other diseases and disorders who require ongoing access to their medications,” said Deirdre Floyd, President of the Canadian Epilepsy Alliance. “It’s terrifying when someone living with seizures goes to the pharmacy to refill their prescription only to find out there is a shortage. It has happened too often in recent years to too many people who can’t miss their medication, and hopefully this will help to address shortages in the future.”
“On behalf of the 300,000 people across Canada living with epilepsy, I want to thank Minister Ambrose for implementing this change to the Federal health regulations. I also wish to thank the Members of Parliament, from every party, who have supported past efforts to ensure the safety of people who require ongoing medications.”
“Today’s announcement won’t end drug shortages,” continued Floyd. “That will require further efforts on the part of government and industry to react when a shortage is anticipated. What today’s announcement does mean is that individuals and families have a real opportunity to prepare in times of anticipated crisis.”
Minister Ambrose’s announcement comes after years of work on the part of the Canadian Epilepsy Alliance and other organizations, raising the issue of drug shortages with Federal regulators and Parliamentarians. The voluntary notification system, where manufacturers may provide information on an industry administered website, has often seen shortages not reported until patients discover the shortage on their own.
This is especially dangerous for individuals living with epilepsy where an interruption in their medication can result in serious adverse effects or even death. It is hoped that with mandatory notification, individuals can work with their physicians and pharmacists to ensure an adequate supply of the medication they require.
Nathalie Jette, President of the Canadian League Against Epilepsy, was also encouraged by the announcement and congratulated members of the Canadian Epilepsy Alliance for their efforts in bringing this important healthcare issue to government. “Mandatory reporting of drug shortages is critical for those with epilepsy as it is unsafe to stop antiseizure medications abruptly. This new policy will enhance the likelihood of ongoing safe care for those with epilepsy who already have to deal with so much uncertainty related to their conditions.”
Said Floyd, “This is an important decision for Canada’s epilepsy community.”
As part of this year’s Scotiabank BuskerFest activities, the Canadian Epilepsy Alliance officially launched a new comic series designed to educate children about the most common neurological disorder in Canada, epilepsy. The Medikidz Explain Epilepsy comic series tells a fictional story based on the experiences of 14-year-old Jack who is navigating middle school while living with epilepsy.
The Medikidz are five energetic, larger-than-life superheroes on a mission to help young people better understand epilepsy. Chi, Pump, Skinderella, Axon and Gastro take children on a journey through Mediland – an outerspace planet shaped just like the human body to explain the diagnosis, investigation and treatment of this neurological condition.
The colourful event included the real-life MediKidz action heroes as well as a series of special guest speakers. Our own Rachael-Lea Rickards from Epilepsy Toronto brought an electric energy to the crowd as the MC for the event. Dr. Cecil Hahn from SickKids spoke to the importance of new education tools like the comic book to help children better understand the disorder. But by far, the most powerful speaker was Adam Shapiro, a young teenager diagnosed with epilepsy when he was just twelve years old. Adam spoke to the crowd about his diagnosis, how he overcomes epilepsy each and everyday with the support of family and friends – he expressed to the crowd and media how important this new comic book will be to a new generation of children. Just like Jack, the books fictional character, Adam knows what it’s like to try and understand what epilepsy is and what it means.
The MediKidz Explain Epilepsy comic series will be made available in local communities across the country through the Canadian Epilepsy Alliance, please visit » OPEN LINK for more information or requests.