opinion: timely access to promising epilepsy therapy and support is crucial
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the purple ribbon is the recognized symbol for epilepsy awareness.
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more than 300,000 canadians live with epilepsy, making it one of the top-five most common neurological diseases. although there is still no cure for epilepsy, about two-thirds of people living with the disease achieve “seizure freedom” or, in other words, control over their seizures with medication. regrettably, for the remaining one-third, or 100,000 canadians, existing medications are less effective, leaving them burdened by the life-altering challenges posed by epilepsy.
those whose symptoms remain unaddressed by current medication face profound difficulties. their top three concerns are: impact on mental health, financial independence (employment and livelihood), and fear of stigma. this demonstrates the devastating impact of epilepsy on families, ability to earn a living sufficient to maintain a household, educational prospects, and the accompanying toll these stressors have on physical and mental health.
the canadian epilepsy alliance (cea) is a network of 25 community-based agencies promoting independence and quality of life for people affected by epilepsy. our member associations provide a range of services from coast-to-coast, encompassing counselling, education, advocacy, public awareness, employment assistance, children’s programs and support groups. unfortunately, despite the crucial services offered, these organizations remain unsupported by governments, unlike many other patient groups that receive operating subsidies.
despite the gap in government support for the cea and each of its member associations, we remain committed to advocating for canadian families affected by epilepsy. one of our most important priorities is ensuring timely and affordable access to promising new medications. this is particularly important for people living with epilepsy, as the chance of achieving seizure freedom decreases dramatically with each new medication prescribed. nearly half of newly diagnosed epilepsy patients find relief with the first medicine they try. however, for those who don’t, the second medication proves unsuccessful for 75 per cent of them. those attempting a third medication face a staggering 97 per cent failure rate.
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this highlights the critical need for accessible new medications—particularly for the 100,000 canadians still grappling with uncontrolled seizures. provincial governments can demonstrate leadership by supporting new epilepsy treatments with promising clinical trial data. one recent example is xcopri (cenobamate), which was approved by health canada in june. the government-funded agency responsible for reviewing new medications (the canadian agency for drugs and technologies in health) recommended it be publicly covered by provincial governments through their drug plans. making treatments like this available to prescribing doctors and their patients will ensure people can get the treatment they need sooner, reducing the likelihood that epilepsy will continue to exert control over their lives.
the epilepsy community eagerly anticipates the elimination of cost barriers to accessing important new medications like xcopri. we urge provincial ministers of health across canada to demonstrate leadership by accelerating their review of new anti-epilepsy medicines, following the recommendations of their own trusted agencies, and quickly approving coverage by their drug plans.
expanding supports and therapies for people living with this debilitating yet treatable condition is crucial to effectively address the unmet need in canada. by prioritizing solutions for people with uncontrolled epilepsy, we can improve the quality of life for the tens of thousands of canadians who still suffer from seizures, and foster hope for a seizure-free future. we can help to give hundreds of thousands of people control over their lives.
laura dickson is the president of the canadian epilepsy alliance.
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