Mayo senator 'dismayed' over HSE snub to minister in translarna appeal

A MAYO public representative is up in arms because the HSE is ignoring a recommendation by Health Minister Simon Harris to make the drug, translarna, available to five young children with the condition, muscular dystrophy.

Senator Rose Conway-Walsh thanked Minister Harris for meeting Anne Marie and Padraig Harte, the Castlebar parents of one of those children, Lewis Harte, when he came to open the primary care centre in the town.

She stated: “I appreciate his meeting them. Moreover, I appreciate the fact that after that meeting he met Muscular Dystrophy Ireland and the HSE to see if there was some way that an agreement could be reached between the drug company, PTC Therapeutics, and the HSE.

“But now I am really dismayed that the HSE is ignoring the recommendations of the minister. I have to ask to whom the HSE is accountable. What is the role of the Minister?

“Can he not instruct the HSE to carry out the simple task of arranging a meeting to discuss an important issue and something that will ensure a quality of life for five young boys in this country?

“I the Minister for Health to explain the accountability of the HSE.

“Is it just a monster, a body that is allowed to do what it likes and ignore the instructions of the minister? These boys need this drug desperately. These families are facing a choice.

“Do they have to move out of this State to get the drug that is necessary for these children to stay mobile? It is wrong. It was wrong when I raised it last year and it is wrong now.

“Something needs to be done about it immediately.”