The father of a young boy with Friedreich’s ataxia has said society “wouldn't treat an animal like this” after the HSE Drugs Group declined to endorse treatment of the rare genetic disorder.
Friedreich’s ataxia is a condition that damages the sufferer’s spinal cord, peripheral nerves and part of their brain.
The symptoms of the disease worsen over time and while some patients can live into their 60s, others die much earlier.
Since 2023, patients in the US have been treated with the drug Skyclarys, which slows the progression of Friedreich’s ataxia by up to 55%.
However, the HSE Drugs Group has not recommended that the drug be reimbursed to patients in Ireland.
The cost of the drug would cost €280,000 per patient every year.
A final decision will be made at a meeting of the HSE senior management team later this month.
On The Claire Byrne Show, Craig Coady said approval would be a “game changer” for sufferers.
Mr Coady’s son, Rory, died with the condition last year and his second son, Paudie, also has Friedreich’s ataxia.
“I wouldn't be fighting this campaign if I felt this drug wasn't working,” he explained.
“I'm still in the middle of grieving with my son Rory - so, I have a lot going on.
“But I'm very disappointed.”
Mr Coady recently met with Taoiseach Micheál Martin and said he is “begging the Government” to ignore the HSE Drugs Group’s recommendation and approve reimbursement of the drug.
“Micheál Martin and the Minister of Health, they really need to get behind this and overturn this,” he said.
“We've money for other stupid things.
“Look, there's important things as well; but we waste a lot of money on other things as well.
“So, it's just hard for me to listen to Michael Barry there because the bottom line, it's down to money - basically [they're] saying my son is not worth it.”
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Mr Coady said campaigning on the issue has been “mentally draining” but he will not give up until the drug is approved.
“To see Paudie every day and to say it to him yesterday evening, it wasn't good news,” he said.
“I didn't see a face like that until the day Rory passed.
“So, it's really not fair; like, we wouldn't treat an animal like this.”
Main image: Craig Coady and his sons. Image: Supplied.
