Cork father heartbroken with HSE decision not to fund 'game-changer' drug

The father of a boy with Friedreich’s Ataxia said they are shocked and heartbroken at the decision by the HSE Drugs Group to recommend that the drug Skyclarys, for Friedreich's Ataxia, should not be covered by the HSE.

Around 200 people in Ireland are living with the rare neurological disease, but Skyclarys is priced at approximately €280,000 per patient per year.

The recommendation will now go to a meeting of the HSE senior management team on August 25 for a final decision.

Craig Coady lost his 13 year old son Rory to the disease last September, and his 16 year old son Paudie also has the condition.

Mr Coady said he was heartbroken and surprised by the decision: “I met Micheál Martin and he told me he was going to do everything in his power to get the drug passed.

“I was positive in July that it would be passed, but when it was deferred to the rare disease group I got a bit worried. Then they were very positive in their meetings and I started to get positive again.

“To be honest, I was waiting for the good news,” he said.

“I was actually gobsmacked, they basically said it wasn’t worth it - poor value for money – we’re talking about my child’s life, and I’ve already lost a child.” 

He said that Paudie was “shocked” by the news: “Maybe that’s my fault, I said to him ‘I have a good feeling about this’.” 

He added that the HSE had also quoted uncertainty about the drug, but he’d been talking to people in other countries who called it a gamechanger, asking: “Do they communicate with other counties?

“Are they saying that the ten countries that reimburse it are wrong?” Mr Coady previously told RTÉ radio’s Morning Ireland that Paudie had told him before “it's okay Dad, if I do die, I'll be with Rory”.