We will continue the fight for Translarna approval to treat Duchenne Muscular Dystrophy in this State Continues – Conway-Walsh
In the Joint Oireachtas Health Committee, Sinn Féin Senator Rose Conway-Walsh again questioned Minister for Health Simon Harris and his Departmental officials on how much longer it would take to get approval of Translarna to treat the small number of children living with Duchenne Muscular Dystrophy.
The Mayo Senator said she did not accept the Government’s decision not to facilitate treatment when it was already EU approved and available in the North of Ireland. The excuse that the drug only has conditional market authorisation for Europe is not acceptable as this has not barred it from approval in 22 other EU countries.
Addressing the issue of cost, Senator Conway-Walsh said:
“Surely, it is the duty of the HSE to negotiate on price. The public price quoted of €300,000 per annum is not the negotiated price and it is disingenuous to use the cost prohibitive excuse on that basis.
“There are only five children currently eligible for Translarna in this country. It will mean the difference between these children being confined to a wheelchair or being upright. Six year old Lewis Harte-Walsh from Castlebar is one of these children.
“I am very concerned that time is against those that need the treatment; especially given the fact that the last review into possible funding of Translarna took nearly three years.
“I, with Sinn Féin and the families of those with Duchenne Muscular Dystrophy, will continue the fight to get Translarna approved in this state.”