Epilepsy Ireland have made a submission to the National Centre for Pharmacoeconomics (NCPE) supporting the reimbursement of ONTOZRY® (Cenobamate), in Ireland.
The drug has been indicated for use in the treatment of adults living with refractory focal-onset seizures. At the moment in Ireland, the drug’s manufacturers have established a compassionate access scheme for patients and clinicians to access the medication. However, this is not a long-term solution and if approved for reimbursement, the cost of the medication would be covered by the Long-Term Illness, Medical Card & Drug repayments schemes – making it much more accessible to patients and clinicians.
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 needs to be reimbursed. These experiences were gathered via a survey we conducted in recent weeks.
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-epileptic 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.
Our survey contained several powerful experiences which outlined all the above and more – the quote below being one such example of this:
“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 fully support reimbursement given that it would represent a further option to treat focal-onset seizures and given that the medication has posted several positive clinical trial results. This medication has the potential to positively impact in the lives of those living with refractory focal-onset seizures in Ireland and therefore, should be reimbursed.
We will update our website and social media channels as further information becomes available regarding the potential reimbursement of ONTOZRY®.
In the meantime, we would like to thank all those who provided input into our submission by outlining their experiences of living with focal-onset seizures. We hope that thanks to this input, we will be reporting that ONTOZRY® will be reimbursed by the HSE.