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Reimbursement submission for new medication for Dravet Syndrome & Lennox Gastaut Syndrome – we need your help!

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Fintepla Box and Packaging

Epilepsy Ireland have been invited to make a submission to the National Centre for Pharmacoeconomics (NCPE) over the coming weeks regarding the potential reimbursement of the anti-seizure medication, FINTEPLA (Fenfluramine).

The medication has been indicated for use in two rare epilepsies – Dravet Syndrome (DS) and Lennox Gastaut Syndrome (LGS). Both syndromes are difficult to control epilepsies, with many available treatments failing to offer seizure control or helping to improve quality of life for those living with them.

If reimbursement is approved, it will mean that the medication is available to patients under the Long-Term Illness or Medical Card schemes. While the medication is currently available to prescribe, as it has not yet been reimbursed, it comes with a significant cost that makes it unattainable for many families supporting a loved one living with DS or LGS.

We are appealing to people with DS/ LGS and/ or their families to please take our survey to inform our submission supporting reimbursement. Every response will be crucial in helping to make this much-needed medication available to those living with these rare, severe epilepsies.

From discussions with our colleagues in Dravet Syndrome Ireland, we are aware that they are also making a submission to the NCPE supporting reimbursement. If you have contributed to their submission, it does not prevent you from also providing feedback to Epilepsy Ireland’s submission. Having two strong and supportive submissions will only help strengthen the case for reimbursement.

Please note that due to the indications this drug has been licenced for, we can ONLY accept survey responses from patients/ families impacted by Dravet Syndrome or Lennox-Gastaut Syndrome (see note below).

Further information on FINTEPLA (Fenfluramine) is contained within the introduction of our survey page. The survey will close on the 12th July.

To take the survey on SurveyMonkey, click the button below:


* Lennox Gastaut Syndrome – Please note…

At present, the medication’s manufacturers (UCB Pharma) have made an application for reimbursement for Dravet Syndrome only. A submission has not yet been made in respect of Lennox-Gastaut Syndrome. We are advised that this will be made in the coming weeks and in anticipation of this, we are seeking feedback in relation to BOTH LGS and DS. It is likely that Epilepsy Ireland will be making two separate submissions for DS and LGS and your responses will be stratified accordingly.

It is also likely that NCPE will issue two separate decisions on reimbursement in due course.