HOPE SPRINGS ETERNAL Both Grace O’Malley and Cillian Mearns will be hoping for good news in the coming weeks with regard to their treatment. Pic: Trish Forde
Conway-Walsh and Chambers are advocates for Mayo families
THE decision by the NHS in the UK to fund the life-saving drug Spinraza places ‘a definitive onus on the Irish Government’ to make the drug available to victims of Spinal Muscular Atrophy (SMA) in Ireland. That is the view of Sinn Féin’s Senator Rose Conway-Walsh who last week said she was ‘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’,” Ms Conway-Walsh said.
“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,” she continued.
Ms Conway-Walsh added: “Spinraza is a life-changing drug for Mayo children Grace O’Malley and Cillian Mearns.”
She confirmed that Ireland and Estonia are the only EU countries which have not yet provided the life-saving drug.
Echoing her views, Fianna Fáil TD Lisa Chambers, who has advocated regularly on behalf of the Co Mayo families, said: “The vast majority of EU member states provide Spinraza and now that the UK has approved the drug, this leaves Ireland as an outlier. This drug is life changing and is proven to work. It vastly improves the length of life and quality of life for children and adults with SMA. 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.”