The Minister for Health, Stephen Donnelly has confirmed that the anti-seizure medication Fenfluramine (FINTEPLA®) will be reimbursed for patients living with Dravet Syndrome and Lennox Gastaut Syndrome from January 2025.
Approval of reimbursement means that the medication will be covered under state schemes such as the medical card and long-term illness schemes. Both DS and LGS are rare and difficult to treat epilepsies which do not respond well to available treatments. Therefore, it is vital that patients affected and their families have access to proven treatment options.
This was a key point that we highlighted in our Patient Organisation Submission to the National Centre for Pharmacoeconomics, which supported reimbursement. These submissions highlighted the lived experience of supporting a loved one and the need for FINTEPLA® to be urgently reimbursed – especially given the positive impact it has shown for those patients who have availed of the treatment, as the below quote outlined:
i have records of all her seizures she also had so many status seizures in 2020 (14 status in Jan -March 2020 alone). You can see from above the amazing seizures reduction we got, and July 2020 was her last hospital stay. She now has approx 2 TCs a week all <1minute and managed at home! This drug has changed our life’s, and I cannot emphasize that enough.... no hospital stays, ambulances, she had a full days and full years in school. My husband is considering going back to work after 4yrs as she is doing well and is stable, but this is a big leap for us. This drug should be available to all Dravet /LGS patients it is a game changer and has given us normality.
Announcing the approval of reimbursement on his X social media page, Minister for Health, Stephen Donnelly said:
Pleased to confirm a significant step forward in supporting families affected by Dravet Syndrome. From January 2025, the HSE will reimburse #fenfluramine (Fintepla®), a groundbreaking medication designed to reduce seizures associated with this rare and severe form of epilepsy. This development will ensure patients in Ireland gain access to this life-changing treatment. This is a good day for these patients and their families, who are grappling with the challenges of these very complex conditions.
We are very pleased to see the approval of reimbursement and have no doubt that the personal testimonies received to our submissions were vital in helping see this decision made today. We would like to thank everyone who contributed to our submissions for sharing your experience.
For families supporting a loved one living with Dravet or LGS, 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.
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. You can learn more about our work in this area in recent years by visiting the 'Advocacy' section of our website.