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Dáil
‹ An tOrd Gnó - Order of Business

Rare epilepsy treatment funding

Summary

Deputy Troy appealed for HSE funding for a four-year-old girl’s epilepsy medicine, Fenfluramine, which the family is currently paying for privately. The Taoiseach expressed sympathy and said he would speak to the Health Minister and the HSE about possible options.

I wish to raise the case of four-year-old girl from my constituency. I will share her name with the Taoiseach afterwards. This young girl suffers from a very rare form of epilepsy. Since October 2023, she has arrested five times and has had to be airlifted by ambulance twice. Thankfully, she has started on a new treatment called Fenfluramine. Unfortunately, the HSE is not funding that and the family has to fund it at a cost of €140 per day. This drug is being used for epilepsy across the EU and Northern Ireland but for some strange reason, it is not being funded by the HSE. No family could sustain that cost on a daily basis and we do need to support families. The Taoiseach is a father and I am a father. What this family is going through is unimaginable. I ask the Taoiseach to intervene to ensure the State will fund this much-needed treatment.

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Simon Harris The Taoiseach Fine Gael

I thank Deputy Troy for raising this matter. I cannot imagine what that family is going through with their little four-year-old girl, having to watch her in a very difficult state on many occasions and wanting to do everything right by her. I will certainly talk to the Minister for Health and the HSE about this. Sometimes different avenues can be explored if only a small number of children are involved. I will engage with the HSE and come back to the Deputy if he gives me the details.

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