A father whose oldest son died with Friedreich's Ataxia has said he can now “grieve in peace”, knowing that his second son will be prescribed Skyclarys.
Friedreich's Ataxia is a rare genetic condition that slowly damages a person’s muscles, nerves and causes them to lose their voice.
Yesterday, the HSE announced that it would reimburse Friedreich's Ataxia patients for the cost of the drug, Skyclarys, which slows the progression of the disease by 55%.
Previously, officials had declined to endorse reimbursement, citing the €280,000 annual cost.
However, officials said manufacturers BioGen had made the HSE a “substantially improved financial offer”.
On The Claire Byrne Show, Craig Coady said his phone has been “just been hopping constantly ever since”.
“It's just amazing news,” he said.
“The Minister for Health, to be fair, she phoned me herself to give me the news.
“Now, when her name did come up on my phone, I said, ‘This is not good news’.
“It's just been a long couple of months.”
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Mr Coady’s oldest son, Rory, died with Friedreich's Ataxia last year and his second son, Paudie, has also been diagnosed with the disease.
Speaking to Newstalk earlier this year while he campaigned for the HSE to reimburse Friedreich's Ataxia, Mr Coady described himself as “still in bits with Rory”.
However, he felt obliged to campaign for Skyclarys reimbursement for his second son.
“I can just grieve now in peace for a little while and get this drug as soon as possible to Paudie,” he said.
“I'm planning today to get his bloods done now, baseline bloods done for this drug.
“Look, it's great news that it's been passed, now to get the drug to Paudie is our next step.”
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Mr Coady added that he does not “want to waste time” getting Paudie his prescription.
“They all need this drug basically yesterday,” he said.
“There was a lot of months wasted on this with campaigning, but it's just great news.
“Two weeks ago, when the drug committee weren't going to reimburse him, it was just like the day when little Rory passed, the face of him.
“It was just completely different yesterday when, when I got off the phone from the Minister for Health, I just ran down to his room and it just brought a bit of light back into this house again.”
Main image: Craig Coady and his sons.
