Fenfluramine reimbursement for Dravet syndrome
Deputy Troy raised the case of Clodagh Walsh and urged approval of fenfluramine, which had transformed her life. Minister Donnelly said there was good progress on reimbursement and that he had stressed the child's urgent case to the relevant bodies.
I am raising the case again of a four-year-old constituent of mine, Clodagh Walsh, who suffers from a rare, life-limiting and devastating degenerative neurological condition called Dravet syndrome. In six months in 2023, she was attended to five times and airlifted twice. Since she started on a drug called fenfluramine, she has had no seizures and it has been life-changing for this young girl. The company marketing fenfluramine submitted an application to the HSE to have this medicine added to the reimbursement list in July last year. It is on the reimbursement list in the UK, France, Germany and the Netherlands. I understand there is a child who has the same condition in Cork who has been approved and is having this treatment paid for. I want to know why somebody in Cork can avail of it and someone in Westmeath cannot.
Comment on this
Deputy Troy and I have discussed this case several times. He got a detailed response from me about the process recently. Further to that, I contacted the National Centre for Pharmacoeconomics last night and again this morning.
I am happy to tell the House that there is good progress in the process on this medicine. There are further steps to go. I emphasised to its representatives the case in question and that there is a sick child. It is aware of the urgency of the situation. As I know the Deputy will appreciate, we now have to let the apparatus of the State engage in commercial discussions with the pharmaceutical company.