THUMBS UP Both Cillian Mearns and Grace O'Malley will now be looking forward to receiving treatment which will help them cope with their SMA condition.
“We cannot express in words our delight at this news”. That was the reaction for the campaign group for Grace O’Malley from Hollymount after the HSE approved the use of the drug Spinraza for children with SMA.
Minister for Health, Simon Harris, TD, announced this afternoon that the HSE had approved the use of the groundbreaking drug, Spinraza, for children with Spinal Muscular Atrophy (SMA). SMA is a genetic condition that affects the nerves in the spinal cord and it is estimated that there are approximately 25 children living with SMA in Ireland. There was no prior treatment for the condition and overtime children’s conditions would deteriorate causing problems with movement, muscle weakness and difficulty breathing and swallowing.
The approval of Spinraza follows a lengthy campaign by patients and their families. The families of Grace O’Malley from Hollymount and Cillian Mearns from Shrule were to the forefront of the national campaign to get the HSE to approve the drug.
Minister Harris made the announcement on Twitter where he acknowledged how ‘hard the journey has been for families to get to this point’ and he said he was ‘very glad children in Ireland will now have access to the drug’.
Responding to the tweet, the Friends of Grace charity, which was set up to support nine-year-old Grace in her battle with SMA, welcomed the news tweeting: “We cannot express in word our delight at this news”. The group also thanked other campaigners and politicians for their support during the campaign.
The HSE had initially refused to approved the drug in February but came under intense pressure to approve the drug after the NHS in the UK reached a deal with the Biogen, the manufacturers of Spinraza to provide the drug to sufferers in May.
Minister for Rural and Community Development Michael Ring, TD, who has been contacted by the O’Malley and Mearns families on many occasions, welcomed the news.
“I know how difficult this long journey has been for the families involved to get to this stage but I am very pleased that children in Ireland will now have access to Spinraza.
“Having met with and spoken to the families of the children directly affected by SMA, I know this is a truly momentous day for them and their families. This drug will hopefully enhance the quality of life for children suffering with SMA and I wish them all the very best,” he said.
Fianna Fáil TD Lisa Chambers said she was ‘absolutely thrilled’ by the announcement and commended the O’Malley and Mearns families for their determination.
“The sheer determination shown by these two young children and their parents is truly inspiring. I am just thrilled to see that their hard work has finally paid off,” she said.
Senator Rose Conway-Walsh also welcomed the news and hoped families do not have to wait long to access the drug.
“I am especially delighted for Grace O’Malley and Cillian Mearns who will now be able to enjoy a quality of life that they have not experienced before. Right throughout the campaign I have highlighted that time is of the essence, and I hope that all necessary steps are taken to ensure that access to the treatment is immediate.”
Fine Gael General Election candidate Alan Dillon also welcomed the news.
“Families across Ireland have fought a long journey to get here, their supporters and friends have endured a few set backs on the way but I am so pleased children like Grace O'Malley and Cillian Mearns in Mayo will now have access to this wonder drug.”
In a statement the HSE said the recommendation is to approve access for children under 18 years with genetically confirmed SMA Type I, II or III, in accordance with the controlled access criteria recommended by the Rare Diseases Technology Review Committee.