Fianna Fáil TD for Mayo Lisa Chambers has called on the Minister for Health to move negotiations for Spinraza along and get a decision for families.

Speaking on the matter Deputy Chambers said, “Parents of Grace O Malley and Cillian Mearns have to continue their excruciating wait for a decision on a life changing drug for their children, we had expected a decision on February 14th but it never came, the wait and the not knowing is torture for these families and we urgently need a decision from the HSE.

“We understand negotiations are still ongoing and it was really disappointing to learn that Biogen, the company which manufactures Spinraza, has not actually lowered its price as had been widely rumoured. The cost is exceptionally high for the medication at 600,000 euros per child per annum and the HSE have refused to pay this amount.

“It has come to my attention that Biogen have attempted to add additional drugs to their offer to the HSE as cheaper alternatives to other drugs currently being purchased by way of a trade off, but were still unwilling to bring the price of Spinraza down, this is greed getting the better of the company and I hope they will rethink this approach.

“Biogen, who pride themselves on being an ethical company, need to genuinely engage in the negotiations and bring their price down to a more reasonable level; and the HSE also need to genuinely engage and be willing to pay more than what they are offering because this is a drug we know works and is for children.

“If as a country we cannot look after the most vulnerable in our society, sick children, then we really need to take a look at what kind of a health service we have.

“I am calling on the Minister for Health to move these negotiations along and get a decision for these families,” concluded Deputy Chambers.