Mayo Senator Rose Conway-Walsh has said the decision by the NHS in Britain to fund Spinraza places an definitive onus on the government must act decisively and quickly to ensure that Irish children can access this life saving treatment.
Conway-Walsh was speaking after the NHS England and Wales announced that it had reached a comprehensive deal with the pharmaceutical company Biogen to provide Spinraza drug treatment to those suffering with Spinal Muscular atrophy.
“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.”
Mayo Fianna Fail TD, Lisa Chambers, said this drug is life changing and is proven to work. It vastly improves the lenght of life and quality of life for children and adults with SMA.
She stated: "The most painful thing for any parent is to watch their child suffer and not be able to help. In this case there is a drug that can help and all that is standing in the way is the HSE and money, which is unbearable for parents to cope with."
"I have worked clossely with the families of Grace O'Malley and Cillian Mearns in Mayo to help them and their families access this drug. We have had demonstrations outside Leinster House, briefings for TDs and senators and numerous letters to the Minister for Health Simon and still we have no decision.
"What we have is constant disappointment and kicking the can down the road. Heretofore the Irish government has used the fact that the U.K. had not approved the drug as justification for Ireland not approoving the drug but now this excuse is gone and that is why the NSH decision is so significant for Irish SMA sufferes."
"Siimon Stevens, the NHS Chief Executive, said of Spinraze following the annoucement "This promising treatment has the potential to be life changing for children and their families.
"It beggars belief why Irish children are being denied access to this medicine when we know it works and countries all around us are approving it.
"This government has no problem wasting literally billions of tax payers money to cover cost overruns in the Children's Hospital, Broadband and Metor North but yet it can't find a fraction of that to pay for life changing medicine for just 25 children. There is something seriously wrong with government priorities."