Drug shortages are an ongoing global problem that cannot go ignored. Canadians have been facing shortages of all kinds of prescription drugs, including medications used to treat epilepsy.
Frequently Asked Questions About Drug Shortages
Click here for a fact sheet
Canadian Epilepsy Alliance Calls for Changes to Address Drug Shortages (19 June 2014)
June 19 2014. The Canadian Epilepsy Alliance/l’Alliance canadienne de l’épilepsie (CEA/ACE) is calling for changes to Canada’s system for addressing shortages of prescription drugs. The call comes as Health Canada conducts a public consultation into the state of Canada’s drug shortage notification system, a system the CEA says is not doing enough to prevent and address drug shortages. “We need real action on drug shortages in Canada,” says Suzanne Nurse, Chair of the CEA Drug Shortages Committee. “Too often people living with epilepsy only find out about a drug shortage at the pharmacy when they try to refill their medication. That is unacceptable and puts the health and safety of
people living with epilepsy at risk.” People with epilepsy can face serious consequences including injuries, accidents and even death if there is a sudden disruption in the supply of their anti-seizure medication. The impact on someone’s life can be tremendous when they leave their pharmacy empty-handed, there is huge stress, worry about potential loss of a driver’s licence or loss of a job due to breakthrough seizures, and parents worry about their child’s safety.
Diana, a mother in London Ontario, was glad to learn about Health Canada’s public consultation. “I did the survey right away” says Diana who has had a personal experience with drug shortages. “It was scary said Diana, referring to a shortage of an epilepsy medication called clobazam this spring. “I called one drug store after another worrying that I would not be able to get my daughter enough medication to last through the shortage. No one should have that extra stress in their lives.”
Health Canada’s Consultation on the Notification of Drug Shortages centers on the effectiveness of a single website, drugshortages.ca, where pharmaceutical companies can post information about drugs in short supply. Posting is voluntary and information about the frequent shortages in recent years has often come late or not at all, meaning patients, physicians and pharmacists are often left scrambling.
The Canadian Epilepsy Alliance believes that Health Canada must move to a mandatory notification system, as the United States has done, with pharmaceutical companies providing information about shortages as soon as it available. That notification is only one part of what needs to happen to address shortages, says the CEA’s Suzanne Nurse.
“Early notification gives people more time to respond to shortages,” says Nurse, “but notification on its own does not prevent shortages and it doesn’t address what happens when there is a shortage. We need Health Canada to be more involved, working with manufacturers, pharmacists, physicians and patients, to prevent shortages before they happen and to take real action when they do.” Health Canada’s public consultation on drug shortages runs until July 5th. The 9 question online survey takes about 10-20 minutes to complete and gives anyone concerned about drug shortages an opportunity to make sure their voice is heard.
Public Consultation: http://www.hc-sc.gc.ca/dhp-mps/consultation/drug-medic/consult_shortages-penurieseng
For more information contact:
Suzanne Nurse, PhD
Chair, Canadian Epilepsy Alliance Drug Shortages Committee
Phone: (519) 317-9174
Email: [email protected]
About the Canadian Epilepsy Alliance
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, please call 1-866-EPILEPSY (1-866-374-5377).
Have Your Say on Drug Shortages (May 22 – July 5)
“Your medication isn’t available”. This shocking news from your pharmacist comes out of the blue with little time to seek solutions. Unfortunately, it’s often the first notice that people receive that there is a drug shortage and many people with epilepsy cannot simply change their medication safely on short notice.
Over the past five years there have been frequent drug shortages in Canada, including multiple shortages of epilepsy medications. The situation is not getting better. If nothing is done to identify and address the causes of drug shortages we expect the situation to get worse in the coming years.
Health Canada is holding a public consultation on the current approach to drug shortages from May 22 to July 5, 2014.
The public consultation will go a long way to making sure decision makers hear from the people most affected by drug shortages. The Canadian Epilepsy Alliance, of which Epilepsy Ontario is a member, encourages everyone concerned about drug shortages to participate.
For an introduction to drug shortages and an overview of the survey questions in the public consultation click here.
Click on a link below to participate in the public consultation:
Contact [email protected] for more information on anti-seizure drug shortages and the strategy proposed by the Canadian Epilepsy Alliance to address this serious issue, or click here for a more detailed analysis.
Lives at stake
Sudden discontinuation of an epilepsy medication, or suddenly changing epilepsy drugs, can cause breakthrough seizures and life-threatening status epilepticus (prolonged seizures).
Changes in epilepsy medications are normally made slowly over many weeks, to gradually taper off one drug and introduce another. If a drug shortage happens with no warning, people do not have time to make a gradual change in their medication.
This opens the floodgates for many other concerns including:
- injuries and accidents
- loss of employment
- loss of driver’s licence
- financial hardship
- stress on family members and relationships
As an added risk, people may not achieve the same seizure control with a different medication or when they resume their regular anti-seizure drug.
The current situation
The current approach to drug shortages in Canada relies on voluntary notification by pharmaceutical companies on a website, drugshortages.ca, with the hope that this will help the health care system react to the shortage.
Information about drug shortages may be posted late or or not at all, and notices often sit on the website with little effect because the information does not get out to the doctors, nurses and patients who need to know.
When a shortage happens, people are left scrambling to try and get information and figure out what they should do.
How can Epilepsy Ontario help?
We believe pharmaceutical companies have a moral and ethical responsibility to not only maintain a consistent supply of medication, but to notify Canadians (be they patients, pharmacists, physicians nurse practitioners or Health Canada employees) as soon as they become aware of a potential drug shortage. The public deserves to have access to accurate information about the cause and duration of a shortage.
Epilepsy Ontario is here to help you voice these concerns and bring attention to this issue. We strongly encourage the government to review this drug shortage problem. We have written to both the federal and provincial levels of government politicians urging them to take immediate action.
It is unacceptable for Health Canada to have “no authority” over the supplies of medication on the market. The government must examine the underlying factors that cause drug shortages and take action to prevent future shortages.
You can join the fight for consistent and adequate supplies of anti-seizure drugs. Click here to find out how you can support Epilepsy Ontario.
From epilepsy organizations
- Epilepsy Ontario’s Voices of Epilepsy series
From drug databases
- Canadian Drug Shortage Database– for a list of drugs currently in short supply
- Please note: pharmaceutical companies submit voluntary reports to the database. As such, the information on the above website may not be complete.
- Canadian Drug Shortage – for detailed information on shortages
In the government
- Federal government’s emergency debate (March 12, 2012)
- Result: Ministers asked the Standing Committee on Health to study the role of government and industry in determiningCanada’s drug supply.
- Submissions to the Standing Committee on Health from:
In the news
- CTV: “Epilepsy patients hit by sudden drug shortages” (Oct. 17, 2011)
- Toronto Star: “Anti-seizure drug shortage raised concerns” (Aug. 4, 2011)
- CTV News Kitchener: “Ont. scrambling to deal with expected drug shortages” (March 14, 2012)
- CBC Radio – White Coat, Black Art with Dr. Brian Goldman: “We Must End Drug Shortages” (Aug. 20, 2012)
- CBCRadio – White Coat, Black Art with Dr. Brian Goldman: “The Drug Shortage: bonus material and links” (Sept 3, 2012)
- CBC Radio – White Coat, Black Art with Dr. Brian Goldman: “The Drug Shortage: Season Opener” (Sept. 4, 2012)
- CTV: “Pharmacists warn worsening drug shortage will compromise patient care” (Jan. 14, 2013)
If your pharmacy is unable to fill your prescription, consult your healthcare provider immediately. Do not make any changes to your treatment (i.e. skipping doses, reducing the dose, or discontinuing a drug) on your own. Your physician or nurse practitioner can discuss the potential shortage of a drug with you and develop a treatment plan to safely manage your epilepsy condition.