Translarna reimbursement
Deputy John Brassil raised the refusal to reimburse Translarna for children with Duchenne muscular dystrophy and asked what chance those children had of receiving it. The Taoiseach said the HSE had refused reimbursement because of cost and lack of efficacy, and the company had taken legal action.
On page 71 of the programme for Government, it is stated that, throughout their lives, people with disabilities should be supported in maximising their potential. In light of the decision by the health authority to refuse access to Translarna for children suffering from Duchenne muscular dystrophy, what prospect have those children of receiving the drug and increasing their ability to stay ambulant for up to ten or 15 years of their lives? It is a very serious issue. We have got some meetings with PTC Therapeutics and the families involved later today. As we speak, the avenues of communication seem to be closed off. I ask the Taoiseach to liaise with his colleague, the Minister for Health, Deputy Harris, to try to get this issue back on the agenda and resolved.
Comment on this
I understand the HSE decided not to reimburse Translarna purchasers because of the lack of efficacy and the high cost of the medicine in question. The last I checked, the company had taken the State to court. It is not common practice for a pharmaceutical company to take the State to court but it will be a difficult case to resolve given that legal action has now started.