Tag Archives: Epilepsy

Mother calls for more action to develop mandatory drug-shortage database

March 21, 2014

When Diana went to fill her daughter’s clobazam prescription last week, she was in for a big surprise when the pharmacy told her it couldn’t supply her with all the medication her daughter needed.
Empty pill bottle615
Diana was unaware there was a medication shortage.

With the help of Epilepsy Ontario, Diana was able to get an additional supply of clobazam for her daughter, but it still isn’t enough of the medication to last until the shortage is slated to end in early May.

Since then, Diana has been spending much of her free time phoning pharmacies asking if they have clobazam in stock. This causes another hurdle for Diana because if she has to switch pharmacies, she needs to go back to her daughter’s neurologist and get a new prescription. Once a patient is prescribed clobazam, it can only be switched once to another pharmacy.

Through her efforts, Diana was able to obtain another clobazam supply that her daughter can use until the start of April, but that still isn’t enough medication to last her daughter until the shortage ends.

“It’s very frustrating — I’m very anxious about this,” Diana says, adding she also finds herself checking the online Canadian Drug Shortage Database to see if updates on the shortage are posted.

Diana says the high level of stress she and other people go through during medication shortages could be averted if pharmaceutical companies were mandated by federal law to provide notices of impending drug shortages so people could get their medications ahead of time, or, if needed, ease off one medication and start on a new one.

Diana has a clear picture of what this should look like.

“If there were drug-shortage notices that went out to all pharmacies, patients who have, for example, a prescription for clobazam, could get a phone call or an e-mail notifying them that there is the possibility of a shortage coming up, and an outline would be given for what steps need to be taken,” she says.

Given that pharmacies already have systems in place to notify people when prescriptions are due to be refilled, Diana says she doesn’t see why existing systems can’t be updated to include shortage notices.

Diana is also taking the initiative to write her MP’s office to explain the need for a mandatory drug-shortage database — and she’s encouraging others to follow suit.
Clobazam, which is marketed by several pharmaceutical companies in Canada, is a common medication prescribed to people with seizure disorders. The medication is usually prescribed to work in tandem with other pharmaceuticals. While several companies manufacture the drug, some people with epilepsy can experience changes in their seizure control when they switch brands.

There have been multiple shortages of anti-seizure medications over the past few years, and this is at least the second clobazam shortage in 14 months. In January 2013 Epilepsy Ontario issued a notice that pharmacies had back orders of clobazam.

In September, new guidelines were established that have been developed by government, industry and other stakeholders clearly outlining the expectations, roles and responsibilities for all stakeholders during a medication shortage.

Adhering to these guidelines is important to ensure safety for people with chronic conditions requiring medications, says epilepsy information specialist Suzanne Nurse.

“When it comes to managing drug shortages, early notification from drug manufacturers is key,” she says.

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.

OBCL Epilepsy Scholarship Awards are back — and you can apply now

March 6, 2014

Are you a student living with epilepsy entering your first year of university in September? If so, you have an opportunity to apply for an OBCL Epilepsy Scholarship Award — and OBCL president Lawton Osler is hoping to see lots of applicants.

OBCL president Lawton Osler (far right) is seen here in 2012 after awarding OBCL scholarships to students (from left to right) Rahman Mohamed, Jaimie Morgan-Lynette and Brooke Corner.
OBCL president Lawton Osler (far right) is seen here in 2012 after awarding OBCL scholarships to students (from left to right) Rahman Mohamed, Jaimie Morgan-Lynette and Brooke Corner.

“I’m looking for as many people as possible to apply,” Osler tells Voices of Epilepsy.

Osler is understandably proud, as his company sponsors the scholarships. Many students living with epilepsy face significant challenges stemming from their condition, coupled with the financial challenges many students face when having to pay for their education.

Receiving one of the six $1,000 scholarships can alleviate some of the financial burden that comes with pursuing post-secondary education, and is a step towards helping young people maximize their potential, Osler notes.

This, he says, is the No. 1 importance of the scholarships.

The scholarships have been sponsored by OBCL since 2006. Their history goes back to the early 2000s when two pharmaceutical companies — first Pfizer, then Lundbeck Canada — offered the scholarships.

Osler, a past Epilepsy Ontario president, was involved with the committee that judged the essays during this time. When Lundbeck stopped sponsoring the scholarship eight years ago, Osler saw a chance to help young Ontarians living with epilepsy finance their post-secondary education.

“I saw this as an awesome opportunity for me to give back,” he says.

The scholarships are being awarded to students who are graduating high school and entering their first year of post-secondary education.  The scholarships will be presented at a ceremony June 6. The deadline for application is May 1.

Last year’s scholarship recipients were Chloe Gallagher (Burlington), Tori Gleason (Smiths Falls), Alexander Johnson (Mississauga), Kirsten Leusink (Cambridge), Katelyn Lewis (Thunder Bay) and Suzanne McGuire (Niagara Falls).

Another past OBCL scholarship recipient is Melanie Jeffrey, an Epilepsy Ontario board member and an outspoken advocate for epilepsy awareness.

Every year, up to six Ontario students win a $1,000 scholarship for post-secondary education. As part of their application package, students must submit a personal essay under that year’s theme.

Students wishing to apply for a 2014 OBCL epilepsy scholarship must do so before May 1 by 5 p.m. You can print a copy of the scholarship application by clicking here.

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.

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 medicOpen medicine bottleation.

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
Status: Available
(Pro-Doc Limitée)
Status: On Backorder 
(no resupply date available)
(Dominion Pharmacal)
Status: Discontinued
Status: On Backorder 
(estimated resupply date is June 30, 2014)
Status: Available
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.Journalist200

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.