‘This winter Grace could die from a cold’

SHOW OF SUPPORT National Hunt jockeys were on hand to lend their support to the SMA Ireland #SpinrazaNow campaign when they met up with Cillian Mearns and Grace O'Malley at the Ballinrobe Races last Friday evening, back, from left: Paul Townend, Bryan Cooper, Barry Geraghty, James O'Sullivan, Mark Walsh, John Fitzpatrick, Ambrose McCurtin, Cathal Landers and Ryan Treacy  Pic: Trish Forde

Mother makes a desperate plea to Minister

Ciara Galvin

A BALLINROBE woman has said that if the HSE and the Minister for Health fail to provide a life-changing drug to children suffering from Spinal Muscular Atrophy (SMA), they are letting those sufferers die.
Lorraine O’Malley, whose daughter Grace (pictured left) suffers from SMA Type II, told national media outside Leinster House on Thursday last that SMA sufferers urgently need the life-changing drug Spinraza.
Speaking to The Mayo News yesterday (Monday), Ms O’Malley said the drug is ‘the only hope’.
“It’s not going to go away, it’s [SMA] going to keep going until they die,” voiced the mother of two.
Described as ‘the worst neuromuscular condition that anyone could be suffering with’, SMA is a muscle wasting condition that debilitates its sufferers, leaving them wheelchair bound and can result in coughs and colds proving life-threatening.
With winter the most dangerous season for SMA sufferers, Lorraine and all the other parents are pleading for swift action.
“This winter Grace could die from a cold, that’s what’s hanging over our heads.”
Along with her husband Paul, parents of Kilmaine boy Cillian Mearns, also Paul and Lorraine, and over 20 other parents of children with SMA, have launched a campaign to put pressure on Minister for Health Simon Harris to make the drug available.
Enlisting the help of jockeys, sporting stars including Leinster rugby player SeΡn O’Brien and Mayo GAA’s Tom Parsons and many more, the campaign has captured the attention of the nation.

Devastating to watch
After demonstrating outside government buildings, Lorraine communicated the devastating impacts the condition has had on her daughter, who is nine years old.
“Things in everyday life are now an impossibility for Grace and leaves us doing things for her like putting toothpaste on her toothbrush, brushing her hair, dressing her and hoisting her to the toilet on a daily basis.”
She added, “Grace is unable to scratch an itch on her body and unable to turn in the night, having to call through a baby monitor for us to come downstairs to do. She is unable to read a book anymore without propping her hands and it is just devastating to watch.”
Described by doctors as ‘groundbreaking’, the drug received its first approval in the US in 2016 and has since been approved in the EU.
The drug is injected into the spinal canal, and a patient requires four ‘loading’ doses in the first two months, then a maintenance dose every four months thereafter.
The Spinraza list price is US $125,000 per injection, which puts the treatment cost at $750,000 dollars in the first year and $375,000 annually after that.
For the drug to be made accessible in Ireland, it must first get through a host of checks, from bodies that include The Health Products Regulatory Authority and subsequently the HSE Drugs Group.
The drug manufacturer Biogen has released a statement saying it has offered the government ‘a competitive price’.
Speaking to media, Minister Harris said pressure should not only be put on the HSE but also, the drug company. He added that it ‘takes two to negotiate’ and that the HSE has not said no to providing the drug and that negotiations are ‘under way’.
Speaking about the minister’s comments, Lorraine said they were ‘disappointing’.
“It’s sad that people are passing the book around and pointing fingers. We haven’t been given a timeframe about the negotiation of the price. Are we expected to be fine watching our children deteriorate while they negotiate?” she asked.
She added, “At the end of the day, if it’s about money, you’re putting a price on their lives.”
Baby Emma
Speaking to Pat Kenny on Newstalk last Thursday, former Mayo hurling and Mayo ladies football manager Frank Browne said he and his wife Deirdre were campaigning to prevent other families from going through ‘the tragedy we have’.
Losing their baby Emma in 2004, at just six months and two days, after she was diagnosed with SMA Type II, Mr Browne talked of the ‘devastation and suffering’ they went through.
“Emma was diagnosed in six to eight weeks … we were told it was likely she wouldn’t see her twentieth birthday, but also that her first cough or cold could be fatal, and that’s how it happened.
“We know it’s an expensive drug and we’re not denying it is but not to get emotive about it, we just can’t put a price on it.
“This drug will both save lives and improve lives and if you don’t believe us, believe in the eight clinical trials and three clinical studies, it’s a miracle drug and it’s going to save lives,” said Mr Browne.