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Conway-Walsh Welcomes Spinraza decision, demands Irish children are given access to life changing drug

15 May, 2019 - by Rose Conway-Walsh

Sinn Féin Mayo Senator Rose Conway-Walsh has said the decision by the NHS in Britain to fund Spinraza places an definitive onus on the Irish Government and that action must be taken to ensure that Irish children can access this life saving treatment.

Senator Conway-Walsh said;

“I am delighted that another jurisdiction has reached a deal with Biogen and that it appears that the price has been lowered compared to previous cases, including the offer that was made to the HSE. It is vital that this is taken into consideration as the HSE considers its next move in negotiations with the company.

“A very important part of today’s announcement is the reference to ‘real-world evidence of its long term benefits’.

"This, together with the possibility of a newly reduced price provides the impetus for the HSE to finally provide Spinraza to improve and further the quality of life of SMA sufferers. However, it is imperative that this momentum is not lost.

"As I have said from the very first time I raised the issue, time is of the essence with SMA.

“Spinraza is a life changing drug for Mayo children Grace O’Malley and Cillian Mearns.

"It will not be lost on the families involved that after today’s decision, along with Estonia, Ireland is the only EU country yet to provide the treatment.

"The HSE Leadership Team were due to meet and make a decision this week. There are no excuses for further delays."

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