People with focal onset seizures asked to share experiences with gov’t to determine value of new drug

October 6, 2016

By Deron Hamel

The Ontario government is asking for input from people who have had experience living with uncontrolled focal onset seizures for an upcoming assessment of a new anti-seizure drug.

300An expert committee, established by the province to review medications, will assess this input along with clinical trial data and an economic evaluation of the drug. Input from people with epilepsy and their family members is an integral part of the review process.

The committee’s recommendation will be used by the executive officer of Ontario’s public drug programs to decide if Brivlera (brivaracetam) should be added to the list of medications covered by provincial drug plans.

Health Canada has approved Brivlera as an add-on anti-seizure drug to treat focal onset seizures in people aged 18 and older who have not achieved satisfactory seizure control with other therapies.

The provincial government accepts patient input submitted by a registered patient group. Epilepsy Ontario’s role is to collect and compile people’s feedback so their voice is heard. The organization will use a survey to gather feedback. People can also contact Epilepsy Ontario by calling 1-800-463-1119 if they would prefer to share their feedback in other ways, such as through a phone interview.

Anyone who has lived with or cared for someone with uncontrolled focal onset seizures can provide input.

“The government wants to know what people’s experience has been, what it’s like to live with uncontrolled seizures and what types of experiences people have had with treatments that are already available,” explains Epilepsy Ontario director of information and client services Suzanne Nurse.

Epilepsy Ontario is particularly hoping to hear from people who have been prescribed Brivlera (brivaracetam) during the five months since the drug was approved by Heath Canada in May, or from people who participated in a clinical trial before the drug was marketed.

Health Canada examines the safety and effectiveness of every new medication it approves. However, the agency does not look at whether or not the drug is cost-effective or if it should be covered by private health insurance or provincial drug programs.

This is where people who have had experience living with difficult-to-control focal seizures can help. By sharing their experiences people with focal onset seizures can help the province determine the cost-effectiveness and value of the medication.

“People’s experience with focal epilepsy and the treatments for this neurological disease are important for the expert committee to understand. What are the aspects that matter to them? What is good about available treatments? What is challenging for people with epilepsy and their families?”

“If someone has taken Brivlera, what has their experience been? If they haven’t taken this drug, what do they hope it will offer patients like them,” Nurse says.

“They’re looking at people  – especially those with uncontrolled seizures – (to determine) what that experience is like, how (epilepsy) affects people’s lives and quality of life, and how it affects their families – the things that aren’t necessarily in a clinical trial research paper.”

The survey can be completed online or by telephone. Click here for more information and to share your perspective.

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 1-800-294-0051, ext. 23, or e-mail deron(at) You can also leave a comment below.

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