Tag Archives: Epilepsy

Clobazam still available but shortage is a concern

February 18, 2014

Click here for an update (May 28th, 2014)

Epilepsy Ontario has learned of a potential clobazam shortage. While there is a supply of clobazam in the market across Ontario and Canada, some pharmacies are reporting shortages of the medication.

Epilepsy information specialist Suzanne Nurse advises people taking clobazam to contact their pharmacies to ensure they can fill their prescriptions ahead of time.

“It’s important to stress that there appears to be a supply in the system at the moment, (but) it’s good to be aware that you shouldn’t wait (until your prescription runs out) to get your prescription filled,” Nurse says.

Epilepsy Ontario reviewed the situation on Feb. 13, discovering that the shortage was more widespread than originally thought. The agency contacted epilepsy agencies and epilepsy specialists to alert them about the situation. The shortage is expected to last until March or April.

Nurse says people taking clobazam shouldn’t panic about the situation. If a pharmacy doesn’t have clobazam, pharmacists are willing to track down supplies from their distribution lines or from other pharmacies for people.

“And there are other supports,” Nurse says. “If people find that they can’t get their prescription refilled they can contact Epilepsy Ontario and we can provide information and if they run into a shortage they should contact their physician immediately.”

The Canadian Epilepsy Alliance has also sent a letter to Canada’s Health Minister Rona Ambrose requesting urgent action to prevent the shortage from escalating.

Six companies market clobazam in Canada. Four of the generic manufacturers are experiencing back-orders. As of Feb. 14, only one of the four manufacturers had posted a notice on the Canadian Drug Shortage Database.

This isn’t the first time there has been concern over clobazam shortages. In January 2013, Epilepsy Ontario sent out an alert about a clobazam shortage. The clobazam supply began to recover the following month.

If your pharmacist is unable to fill your prescription, Epilepsy Ontario recommends you contact your health-care provider immediately. Do not make any changes to your treatment — for example, skipping doses, reducing the dose, or discontinuing the drug — without consulting your doctor.

For more information, please contact Epilepsy Ontario at 905-474-9696, or toll-free 1-800-463-1119, send an email to info(at)epilepsyontario.org or see our drug shortages information sheet.

Writer: Deron Hamel

If you have feedback on this story, or have a story of your own that you would like to share, please contact the newsroom at 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.ca. You can also leave a comment below.

Update on the clobazam supply

Clobazam is currently available in Canada, but shortages of some clobazam products continue.

During March and most of April there were significant shortages of clobazam, and manufacturers were out-of-stock. The Canadian Epilepsy Alliance (CEA) was first alerted to shortages of clobazam in January 2014 by people who couldn’t get their prescriptions refilled. In early February the CEA and Epilepsy Ontario became aware that multiple generic manufacturers were unable to supply clobazam, although the reason for these shortages has not been disclosed. The supply of brand name clobazam (Frisium) became depleted, due to increased demand, as the generic clobazam stocks dwindled. Two of the generic clobazam manufacturers have medication available again, beginning with APO-clobazam (Apotex) in late April and PMS-clobazam (Pharmascience) during the week of May 28th.

Status of clobazam drugs – May 28, 2014
APO-clobazam (Apotex)	Status: Available
Clobazam-10 (Pro-Doc Limitée)	Status: On Backorder (no resupply date available)
DOM-clobazam (Dominion Pharmacal)	Status: Discontinued
Frisium (Lundbeck)	Status: On Backorder (estimated resupply date is June 30, 2014)
PMS-clobazam (Pharmascience)	Status: Available
Teva-clobazam (Teva)	Status: On Backorder (estimated resupply date is June 4, 2014)

If you experience any difficulties due to the clobazam shortage, or a shortage of another epilepsy medication, please contact Epilepsy Ontario for assistance. We would also be interested in hearing your story if you have encountered a shortage of your medication.

Epilepsy Ontario and the Canadian Epilepsy Alliance Drug Shortages Committee have been actively involved in bringing attention to this particular shortage, and epilepsy drug shortages in general, by communicating with the Federal Minister of Health, Health Canada, provincial Ministries of Health, physicians, pharmacists, drug manufacturers, and other stakeholders. People with epilepsy rely on consistent access to their anti-seizure medication. Drug shortages put people with epilepsy at risk, and the consequences can be serious.

Public Consultation on Drug Shortages: If you are concerned about drug shortages you can share your opinion and your comments. A public consultation on drug shortages is being held by Health Canada from May 22 to July 5, 2014. Click here for more information.

Epilepsy Ontario publishing monthly column on Huffington Post Canada website

January 24, 2014

Stop the presses! Epilepsy Ontario is now running a monthly column on the Huffington Post Canada’s website focusing on issues surrounding seizure disorders as well as providing analysis from experts and stories from people of living with the neurological condition and their families.

The first column appeared Jan. 24 and was written by Gena Meldazy, an Epilepsy Ontario volunteer who came up with the idea to raise the profile of epilepsy through a regular column on the popular news website.

“I’m a firm believer that global epilepsy awareness can really be leveraged through the popular press — and the popular press can play a really important role in helping organizations get that message out,” she says.

“We want to bring epilepsy and neurological conditions into a space where we can talk about it in a common language.”

Meldazy had contacted Huffington Post Canada in October, and editors were open to the idea of a regular column dedicated to epilepsy issues.

The maiden column, Undiagnosed Epilepsy Made People Think I Was Acting Out, is Meldazy’s first-hand account of growing up with seizures. It’s also about the lack of information available for people with seizure disorders in the 1990s, how that contributed to her personal awareness of seizures and epilepsy, and why knowledge sharing is important.

Meldazy, whose background is in marketing and communications, has been volunteering with Epilepsy Ontario for about a year. She has focused on helping the organization with its communications agendas and saw the Huffington Post as an excellent channel to bring epilepsy awareness to a larger audience.

A column on the Huffington Post Canada’s website seemed like the perfect way to accomplish her goal on two fronts: the website is widely read and no one is writing a column focused on raising epilepsy awareness.

In fact, Meldazy says she’s not aware of any mainstream news media — online or print — that has a regular feature about epilepsy.

“There’s a sense of excitement on our end that this may be a first,” Meldazy says, adding that often when epilepsy is mentioned in mainstream media the messages contain inaccurate information.

“So, this is a really amazing opportunity to bring trusted experts and those knowledgeable sources on the topic to challenge the myths and stigma that affects day-to-day perceptions of what (epilepsy) is.”

Writer: Deron Hamel

If you have feedback on this story, or have a story of your own that you would like to share, please contact the newsroom at 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.ca. You can also leave a comment below.

SEAC webinar to address needs of students with epilepsy

January 17, 2014

Epilepsy Ontario is presenting a free information webinar Jan. 23 aimed at developing clear messaging about the kind of educational supports children with epilepsy need.

The webinar will bring together Special Education Advisory Committee (SEAC) representatives from across Ontario, including many who will be advocating for the creation of protocols outlining supports that should be made available to students with epilepsy and their families.

There are epilepsy representatives on SEACs throughout Ontario but this is their first opportunity to convene at the same time with other SEAC representatives.

“This is an attempt to bring those SEAC representatives together to discuss their roles as well as how to be an effective SEAC representative, and it’s also the first step towards creating a provincial education agenda for those epilepsy SEAC representatives,” explains Epilepsy Ontario executive director Rozalyn Werner-Arcé.

Every Ontario school board is mandated by the Ministry of Education to have a SEAC. SEACs advise school boards on special education for children with all types of special learning needs, including epilepsy.

Aside from SEAC representatives, the webinar will benefit parents of students with epilepsy and other special needs and anyone else interested in the education system.

The webinar will help participants better understand:

– The role of SEACs and their members
– How SEACs can influence decisions and policy at the local school board level
– How to become a more effective SEAC member, including how to bring forward issues related to students with epilepsy

Lynn Ziraldo, executive director of the Learning Disabilities Association of York Region and respected education advocate, will give webinar participants insight into SEACs and how to bring the epilepsy agenda to the forefront.

Werner-Arcé says the best possible outcome from the webinar would be to continue the conversation about creating a clear picture of what children with special needs and their families should expect from the education system.

“Hopefully, people will find value in coming together and want to continue to meet to start to develop an epilepsy agenda,” she says.

Please e-mail [email protected] to book your registration.

Ziraldo is willing to take questions before the webinar and address them during the session. Please forward your questions to: [email protected].

To join the webinar, go to http://ontariobraininstitute.adobeconnect.com/seac/ to login. You can call in at 416-764-8662/1-888-884-4534, participant code: 7605062#.

Writer: Deron Hamel