Spinraza delay to Mayo children 'due to HSE staff issues'

A MAYO TD has hit out at the government and the HSE for the cruel delay in providing Spinraza to children.

Deputy Lisa Chambers elaborated: "Last June the HSE and government finally did the right thing and approved Spinraza for children suffering with the life limiting condition Spinal Muscular Atrophy (SMA).

“This decision came after a long and gruelling campaign, by parents and children suffering ,which included multiple protests outside Dail Eireann.

“Two Mayo children, Grace O'Malley and Cillian Mearns, are among the 26 children nationally with the condition awaiting the drug.

"Currently 6 children of the 26 have had some access to the drug but Grace and Cillian have not.

"I spoke with the Minister for Health, Simon Harris, to ask about the delay and why the drug had not being provided to all of the children.

“He acknowledged there were problems providing access due to the lack of a specialised medical team to administer the drug.

“He assured me the drug was funded and available but the issue was with getting a team in place to actually do the work.

"He admitted that he wasn't aware a brand new specialist team was required to roll out the drug and assured me he was now working to rectify this.

“Given the huge overruns in the health budget, currently in excess of €400 million, and the lack of money in the HSE, I would have huge concerns there is money in place to pay for this specialist team this side of Christmas.

"The parents are to be invited to a meeting with the hospital.

"I asked for a definitive date from the minister as to when Grace and Cillian and the remaining children would get access to this life changing drug but he was not in a position to give me a date, save to say it would be 'soon'.

"It has been almost five months now since the announcement was made in June that Spinraza was approved.

"It is unacceptable that sick children are still waiting to get access to the drug simply because someone never thought to put the proper medical team in place.

“I hope that the minister will move with a sense of urgency now to get this sorted without further delay."