The HSE have confirmed that the anti-seizure medication Cenobamate (Ontozry®) has been approved for reimbursement. The medication is indicated for use for adults living with focal-onset seizures and has posted several positive clinical trial results over the years.
This is a very welcome development and marks the end of a process which saw Epilepsy Ireland advocate for approval of reimbursement through an extensive submission to the National Centre for Pharmacoeconomics (NCPE).
While the medication has been available to date via a compassionate access scheme operated by the medication’s manufacturers, this was never a long-term solution.
Approval for reimbursement means the cost of the medication will now be covered by the state under the Long-Term Illness, Drug Repayment and Medical Card Schemes.
Our submission to the NCPE focussed on the experience of those living with refractory focal-onset seizures, to give decision makers a clear insight as to why this medication needed to be reimbursed. As many reading this article will know, focal-onset seizures can often be misunderstood and can have an impact on all aspects of a person’s life such as emotional wellbeing, social interactions, or a person’s ability to work or pursue further education. In addition, epilepsy is an individual condition and while there are currently many anti-seizure medications drugs available in Ireland, it is crucially important that people with epilepsy have access to new treatments. This is because there is a percentage of the epilepsy community for whom which currently available treatments do not have an impact in treating their condition.
The submission contained various powerful personal experiences that we received directly from people with epilepsy, with the below being such an example:
I know my epilepsy isn’t as bad as others, but we all deserve to have access to all of the best drugs and treatment available to us. Epilepsy affects us all in different ways, but I would think mental health is affected in 100% of sufferers. The knowledge that there are new and improved ways to help us will go a long way. Gives us hope.
We have no doubt that all the personal testimonies we received were paramount in bringing about this positive decision today and we would like to thank everyone who contributed to this submission. Welcoming today’s reimbursement of Cenobamate, our CEO, Peter Murphy commented:
Epilepsy is one of the most common serious neurological conditions in Ireland, and while most people can become seizure-free, as many as 10,000-15,000 people are still living with uncontrolled seizures. For this group in particular, the condition can be a significant long-term, yet often hidden, disability. Living with epilepsy involves learning to cope not only with the physical impact of seizures, but with impaired psychological and social functioning, while stigma is still an issue reported by many. Along with loss of one’s driver’s license or employment, isolation and low self-esteem are all potential challenges that may cause as many problems as the seizures themselves.
Given the impact that refractory epilepsy can have on all aspects of a person’s life, it's extremely important that patients can access the best possible treatments. It is always encouraging to see the approval of effective new epilepsy medications and cenobamate will offer an additional treatment option for many people in Ireland who have so far struggled to achieve seizure freedom.
Epilepsy Ireland will continue to monitor evidence around emerging treatments and advocate that people with epilepsy across Ireland have access to proven and effective treatments.
Please note that any decision around treatments is a conversation you must have with your medical team. If you need any information or support regarding your or your loved one’s epilepsy, you can contact your local Community Resource Officer. You can find their details by visiting the ‘Our Local Service’ section of our website.
Once again, we would like to thank everyone who contributed to our submission which was crucial in bringing about this positive development today.