NATIONAL PHYSICIAN GROUPS, PATIENTS AND ADVOCATES URGENTLY CALL FOR PROVINCIAL COVERAGE OF “LIFE-CHANGING” EPILEPSY TREATMENT

Effective new treatment for drug-resistant epilepsy remains out of reach for those who need it most, as Ontario and other provinces halt funding talks

/EIN News/ -- Toronto, Ontario, Nov. 21, 2024 (GLOBE NEWSWIRE) -- The Canadian Epilepsy Alliance, national physician groups representing neurologists, epileptologists and other healthcare professionals, patients and the Ontario official opposition NDP are joining forces to call on the provincial government to urgently resume negotiations for public coverage of an anti-seizure medication that is changing the lives of people living with epilepsy.

Xcopri (cenobamate), approved by Health Canada in June 2023, has shown to be highly effective in clinical trials and real-world use for epilepsy patients who have not responded to other available treatments. In August 2023, the Canadian Drug Agency (CDA) - which Ontario funds to review new drugs - recommended that Xcopri be publicly funded by all provincial government drug plans based on compelling clinical evidence.

"Despite the many different medications available in Canada, 30 per cent of patients with epilepsy cannot control their seizures (drug-resistant epilepsy). Drug-resistant epilepsy greatly increases the risk of death for affected patients,” said Dr. Juan Pablo Appendino, a neurologist and epileptologist speaking on behalf of the Canadian League Against Epilepsy, which represents more than 200 medical and basic sciences professionals, social educators and advocates. “Cenobamate can make seizure-free a substantial proportion of patients with drug-resistant epilepsy. This medication has been approved in the USA and Europe, and it is difficult to understand why Ontario patients have been denied access to this medication."

Treatment with Xcopri costs approximately $3,000 per patient per year, which is in line with, or less than, other epilepsy medications that are currently covered by provincial drug plans. Despite the clinical evidence, economic advantages, expert recommendations, and calls from physicians and patients, Ontario and other jurisdictions instructed the pan-Canadian Pharmaceutical Alliance (pCPA) – which negotiates pricing for provincial drug plans – to halt negotiations in October 2024.

“I have prescribed Xcopri to more than 20 of my most complex epilepsy patients who have not responded to other conventional treatments, and we have seen very good results,” said Dr. Eduard Bercovici, neurologist and epileptologist, Director of Southern Ontario Epilepsy Clinic and President of the Association of Canadian Community Epilepsy & Seizure Specialists (ACCESS). “Without provincial coverage, cost is a significant barrier for many patients who qualify for this treatment – many of my patients aren’t able to obtain private insurance. It’s disheartening to have such an important tool at hand be out of reach for patients who have limited other options.”

“Despite trying almost every available epilepsy treatment – including four brain surgeries – I’ve had an endless number of seizures over my lifetime – well into the thousands,” said Chris Pichler, a 38-year-old Ottawa man who experiences focal onset impaired awareness seizures, where he loses consciousness and enters a sleepwalking-like state. “Xcopri has significantly reduced the severity and frequency of my seizures – it has profoundly changed my life. You can’t put a price on that, and I hope the Ontario government sees the significant benefit to epileptics like me, and the health care system at large.”

The Ontario government’s decision to halt negotiations contradicts Premier Doug Ford’s July 2024 public commitment as Chair of the Council of Federation to expedite access to life-saving medications. Critics are calling on the Premier and his government to direct the pCPA to reach a deal for the medicine to be covered.   

“People living with uncontrolled epileptic seizures need our help. We are failing these Ontarians by denying them access to proven, life-changing treatments,” said Official Opposition NDP Health Critic France Gélinas. “The Premier himself has promised to do better, but his government has yet again failed to deliver. It’s time for Ontario to demonstrate leadership by listening to the experts, putting patients first, and negotiating a reasonable price for this medication so it becomes available to those who need it most.” 

“Living with uncontrolled seizures increases the risk of early death and affects all aspects of life – from work and education to social relationships and mental health,” said Laura Dickson, President of the Canadian Epilepsy Alliance. “Xcopri is giving more than 100,000 patients across Canada who have not responded to other treatments new hope for a better quality of life. We collectively urge the Ontario and other provincial governments to follow the recommendations of their own trusted agencies, and quickly approve coverage by their drug plans.”

-30-
Additional quotes:

“The primary goal of my day-to-day practice is to improve the quality of patients with epilepsy. About 30 per cent of these individuals suffer from uncontrolled seizures. As a result, they cannot drive, they lose job security, and struggle to care for their families.  I have seen seizure reduction and even seizure freedom in a significant number of my patients who take cenobamate. Seizure freedom is life changing for a person with epilepsy. These are patients who absolutely cannot afford to access this highly effective medication without government support. Ontario has the opportunity be a leader in supporting drug access for a marginalized patient group, and to promote a tier-less healthcare system.” Dr. Lysa Boissé Lomax, Associate Professor at Queen's University, Director of the KHSC Comprehensive Epilepsy Program and President-elect of the Canadian League Against Epilepsy 

“Since I started taking Xcopri nearly one year ago, my seizure activity has drastically decreased. Like many people living with epilepsy, I have tried multiple medications since my diagnosis, and none have been as effective as Xcopri. It’s had a profoundly positive impact on my life, and I believe it deserves the full support of the Ontario government.”  - Adam Sweet, diagnosed with epilepsy in 2019

“We see in our clinical practice how cenobamate has been effective for many of the patients unable to control their seizures with other medications. For these difficult-to-treat cases, cenobamate is proving itself to be superior to all prior anti-seizure medications and is an essential addition to our tool kit as epileptologists. Whereas many of these patients had no hope for achieving complete seizure control and living a reasonably normal life, they do now.  The government absolutely needs to cover this medicine; this is a no-brainer and needs to happen. Ontario needs to lead the way here, much as it has always done in epilepsy matters.” - Dr. Tadeu A. Fantaneanu, neurologist speaking as the Director of the Adult Epilepsy Program at The Ottawa Hospital

 About the Canadian Epilepsy Alliance
The Canadian Epilepsy Alliance (CEA) is a Canada-wide network of 25 community-based agencies promoting independence and quality of life for people affected by epilepsy. Member Associations provide a range of support services, information, advocacy and public awareness from coast-to-coast. This includes counselling, education, advocacy, public awareness, employment assistance, children’s programs and support groups. CEA’s vision is to ensure every person living with epilepsy has the opportunity to achieve his/her fullest potential and participate in and contribute to all aspects of life.

Carla Minogue
                    Canadian Epilepsy Alliance
                    403-461-5717
                    media@stretchminogue.com