Epilepsy community urged to alert MPs about drug-shortage issue

May 17, 2012

Are you affected by a drug shortage?

Contact your health-care provider if your pharmacy is unable to fill your prescription. People with epilepsy should not make any changes to their treatment (i.e. skipping doses, reducing the dose, or discontinuing a drug) without consulting their health-care provider. Your physician or nurse practitioner can discuss the potential shortage of a drug with you and develop a treatment plan to most safely manage your epilepsy condition.

People living with seizure disorders are being urged to contact their MPs to press the federal government to take a leadership role in the effort to address the issue of medication shortages.

Medication shortages exist at a global level and have been affecting a wide variety of pharmaceuticals, including those taken by people to control seizures. While the federal government has begun to make inroads to addressing the issue, there’s still much more that needs to be done, says Suzanne Nurse, an epilepsy expert, who has been volunteering with the Best Medicine Coalition and the Canadian Epilepsy Alliance on the drug-shortage issue.

Nurse points out that federal Health Minister Leona Aglukkaq went to the pharmaceutical industry last year and asked sector leaders to deal with the situation. As a result, industry representatives, along with other stakeholders, including the Canadian Medical Association and the Canadian Pharmacists Association, came together to form a working group consisting of several stakeholders to address the drug-shortage issue.

While there has been some forward movement on the reporting of drug shortages since the working group’s formation, sporadic medication shortages continue to put people with epilepsy at risk, says Nurse.

She notes it’s mainly older drugs that have been affected by these unprecedented shortages over the past two years.

The epilepsy community relies on access to a variety of medications, and many anti-epileptic drugs came to market before 1970. The higher prevalence of drug shortages among older medications is a serious concern for those patients who have obtained the best seizure control with an older drug or who benefit from the cost effectiveness of an older, off-patent medication, Nurse says. 

She adds that people have had life-threatening seizures because of the sudden discontinuation of their medication and being switched to a new drug.

“Epilepsy is not a condition where you take one drug today and a different one tomorrow, people need a consistent drug supply,” says Nurse.

“People that are concerned about this should contact their MP and let them know that this is a concern for them and that they would like to see the federal government taking a leadership role on this important issue.”

While some of the drugs that were in short supply are available again, two epilepsy medications — Zarontin (ethosuximide) and valproic acid — are among the current drug shortages.

Unfortunately, the reporting websites that have been set up to provide information about drug shortages do not have any details about the lack of Zarontin capsules and the information related to valproic acid shortages is incomplete, says Nurse.

The best source for people regarding availability of a prescription medication is their pharmacist.

“If your epilepsy medication is in short supply it is very important to contact the health-care provider who treats your epilepsy condition,” says Nurse.

Medication shortages can also vary between regions — even between pharmacies — according to the Epilepsy Support Centre’s website.  The site also notes that some medications once in short supply, Phenobarbital, for example, have seen increased availability.

To provide a first-hand account of the stress the medication-shortage issue is having on families, the mother of a teenager living with a seizure disorder tells the Voices of Epilepsy she visited a pharmacist May 16 to ask about the availability of Apo-Divalproex (divalproex sodium or valproic acid), which her daughter takes to control seizures. The pharmacist said the medication is expected to be delivered June 17. 

“That doesn’t seem so bad, but the medication has been on back-order since January,” the mother says. “I have no idea if the back-order date will keep getting pushed back until after the pharmacy runs out of the drug, and the possibility of that happening is quite sobering.”

Like Nurse, the London, Ont.-based Epilepsy Support Centre is urging people affected by the neurological disorder to contact their MP to raise awareness of the matter.

“Shortages of drugs used to treat epilepsy can have life-threatening or life-altering consequences,” the site says.

“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.”

If you have feedback on this story, please call the newsroom at 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.ca.

Writer: Deron Hamel

4 responses on “Epilepsy community urged to alert MPs about drug-shortage issue

  1. Audrey Francescut

    My husband age. 62 has been Valporic Acid for 20 years. He is a long term care facility and the pharmacy was unable to provide for his dosage yesterday March 13, 2016. I was lucky enough to have a 2 day supply at home to administer to him. We were only able to find a one week supply at another Drug Store.
    He is dire need for Valporic Acid to control his seizures, which have in the past, been life threatening.
    The fact that we are not kept advise of these severe shortages is quite concerning.
    Where do we go from here? Do we have to import it from the U.S.A. ?
    Shameful Ontario.

  2. glenda

    I have a seizure disorder and have been on this drug since 2003. My disorder was so severe that my vision would be knocked out or so severely distorted daily for periods from 20 to 40 minutes on a daily basis. I have not been denied my medication yet but it has been changed from the 250 mg to the 125 mg pills reasons on pakaging is
    shortage. What I have noticed however know my legs are shakingand am having severe spasms in my back ,neck,legs, and hands. I am fearing that my vision will be next. I have had to go on leave from work from all my symptomology as I work as a PSW in long term care and no longer able to function safely on my job. I am still taking the same amount of the drug but the pills are red and I am wondering if there might br something due to the dye in the pill affecting my condition I don’t know maybe this is a relapse of an undiagnosed condition which took me off work for 18 months 8 years ago. I need a new general practioner as my great doctor retired and the practice I was connected to through health connect is lacking in proffessional staff and I can’t even obtain a doctors appt when needed hence I have to go the the er in Brockville to get treatment. It is the opinion of this writer that the whole health care system is in dire straights. Hanging in there in Ontario

  3. glenda

    I have a seizure disorder and have been on this drug since 2003. My disorder was so severe that my vision would be knocked out or so severely distorted daily for periods from 20 to 40 minutes on a daily basis. I have not been denied my medication yet but it has been changed from the 250 mg to the 125 mg pills reasons on pakaging is
    shortage. What I have noticed however know my legs are shakingand am having severe spasms in my back ,neck,legs, and hands. I am fearing that my vision will be next. I have had to go on leave from work from all my symptomology as I work as a PSW in long term care and no longer able to function safely on my job. I am still taking the same amount of the drug but the pills are red and I am wondering if there might br something due to the dye in the pill affecting my condition I don’t know maybe this is a relapse of an undiagnosed condition which took me off work for 18 months 8 years ago. I need a new general practioner as my great doctor retired and the practice I was connected to through health connect is lacking in proffessional staff and I can’t even obtain a doctors appt when needed hence I have to go the the er in Brockville to get treatment. It is the opinion of this writer that the whole health care system is in dire straights. Hanging in there in Ontario

  4. glenda

    I have a seizure disorder and have been on this drug since 2003. My disorder was so severe that my vision would be knocked out or so severely distorted daily for periods from 20 to 40 minutes on a daily basis. I have not been denied my medication yet but it has been changed from the 250 mg to the 125 mg pills reasons on pakaging is
    shortage. What I have noticed however know my legs are shakingand am having severe spasms in my back ,neck,legs, and hands. I am fearing that my vision will be next. I have had to go on leave from work from all my symptomology as I work as a PSW in long term care and no longer able to function safely on my job. I am still taking the same amount of the drug but the pills are red and I am wondering if there might br something due to the dye in the pill affecting my condition I don’t know maybe this is a relapse of an undiagnosed condition which took me off work for 18 months 8 years ago. I need a new general practioner as my great doctor retired and the practice I was connected to through health connect is lacking in proffessional staff and I can’t even obtain a doctors appt when needed hence I have to go the the er in Brockville to get treatment. It is the opinion of this writer that the whole health care system is in dire straights. Hanging in there in Ontario

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