Bereaved Cork dad hopes Government will step in following HSE Drugs Group recommendation not to fund Skyclarys

On Tuesday, the group recommended against funding the drug for Friedreich's ataxia, a rare genetic disorder which causes progressive damage to the nervous system.

Craig Coady, whose 13-year-old son Rory died from the disease last September. His other son Paudie, who is 16, also has the condition and had been hoping to benefit from the drug. Picture: Chani Anderson

The father of a boy with Friedreich’s ataxia has spoken of their family’s devastation at a decision by the HSE Drugs Group to recommend that the drug Skyclarys should not be covered by the HSE

On Tuesday, the group recommended against funding the drug. 

It is used to treat the rare genetic disorder which causes progressive damage to the nervous system and can lead to heart complications. 

Last month, the group deferred a decision on the drug so further research could be completed. 

The recommendation will now be taken to the senior HSE management team on August 25 for a final decision. 

In Ireland, there are around 200 people who suffer from Friedreich's ataxia. 

At the current price, Skyclarys would cost around €280,000 per patient per year.  

Craig Coady, lost his son Rory (13) to the disease last September. 

His other son Paudie (16) also has the condition and had been hoping to benefit from the drug.

“We had been hoping the HSE would do the right thing and reimburse the cost for the drug. When I told Paudie, his face just dropped, and I feel I've let him down. He's already said to me before, ‘It's okay Dad if I do die. I'll be with Rory,’ Mr Coady told RTÉ radio’s Morning Ireland on Wednesday. 

“The HSE are there to save people's lives, children's lives, adults, whatever. There's still hope there, I believe. I'm hoping Micheál Martin and Jennifer [Carroll MacNeill], the Minister for Health, will step in now and get this overturned because the drug works. It's in 10 other countries.” 

Craig Coady holds a photograph of himself and Rory celebrating a sporting success. Craig says Rory’s memory gives him the strength to continue fighting for access to treatment for his surviving son, Paudie. Picture: Chani Anderson

Mr Coady pointed out that Portugal already agreed to reimburse the cost of Skyclarys, which has been described as a game-changer. 

He acknowledged that it was not a cure, but it “really slows down” the condition.

Technical director of the National Centre for Pharmaceutical Research, Professor Michael Barry, explained that the recommendation by the HSE Drugs Group had been made not only on economic grounds but also on the drug's effectiveness.

“They've not only considered our economic assessment, but they've also considered the Rare Diseases Technology Review Committee and their input, and of course input into that was provided by patients, patient representatives and clinical experts," Dr Barry said. 

“I witnessed the challenges that the drugs group had in coming to this recommendation. I guess it's trying to balance all things. There's huge demands on the HSE in relation to cancer therapies and other drugs for rare diseases, which in fairness they have reimbursed."

Dr Barry added that people’s view on the evidence of the efficacy of the drug would differ, but that the Rare Disease Technology Review Committee recommended this drug.

“There were many factors that came into their consideration, including unmet need and the severity of the condition, the fact that there were no other treatments available and the fact that it may be reimbursed in other countries.

“These were all factors that came into their reasoning," he added. 

Dr Barry said the decision had not been his and that there would have to be a significant price reduction on Skyclarys “to bring it anywhere near the cost-effectiveness levels that we have and indeed that we've reimbursed in the past because we have reimbursed drugs in the past that have been over the threshold in Ireland".

“The HSE doesn't set the price. Biogen sets the price, and the HSE doesn't provide the evidence. Biogen provides the evidence. I think that there is certainly scope, but I would have liked to have seen them approach this in a more proactive way," he added.