'I've already lost one child'

“Are they that horrible in Dublin? To put it down to money for life?”

Buttevant man Craig Coady, whose 16 year old son Paudie suffers from the rare degenerative condition Friedreich’s Ataxia, has slammed a recommendation by the HSE Drugs Group that Skyclarys, a treatment for the disease, not be covered by the HSE due to it not being seen as cost-effective.

“It’s down to money at the end of the day.”

“It’s not value for money – how dare these people say that about my child?

“I’ve already lost a child. Show me a bit of respect, and show respect to the 200 others out there,” he said, referring to the approximately 200 people in Ireland living with the disease.

He made the comments on 96FM’s ‘The Opinion Line’ on Monday 17 August. He said that the impact of the disease and the recommendations by the HSE have had a serious negative effect on Paudie.

“He saw the decision on social media, that it isn’t value for money, so he feels like he’s not worth it. And that really hurts,” he said.

In September 2025, Coady lost his 13 year old son Rory to the same disease – now he fears that without the HSE funding the life-saving drug, he could also lose Paudie.

Friedreich’s Ataxia is a rare congenital disorder which attacks the nervous system and spinal cord. Skyclarys, produced by pharmaceutical company Biogen, is available in nine European countries.

While it does not cure the disease, advocates claim that it can slow the progress of the disease by as much as 55%.

However, the HSE’s Drugs Group said that the cost associated with the drug - €280,000 per patient per year, with a five-year budget impact of approximately €130 million – was not cost-effective, considering what it called “limitations and uncertainties associated with the available clinical efficacy data”.

It has been reported that health officials in Belgium, Sweden, and the Netherlands have experienced challenges with the drug’s efficacy and its high price.

However, the recommendation not to approve the drug has been heavily criticised by TDs in both the Government and opposition.

48 Fianna Fáil TDs, senators, and MEPs wrote a letter to the HSE leadership – which was also sent to an Taoiseach Micheál Martin and an Tánaiste Simon Harris – saying that in light of the recommendation, Ireland’s system for approving the funding of new drugs is “broken and not fit for purpose”.

Members of the Fine Gael parliamentary party - including Cork TD John Paul O’Shea - met with representatives of Biogen on Monday 17 August.

The deputies appealed to the company to “engage fully with the HSE on what is possible to get patients access to this drug”.

“We have also called on Biogen to give consideration to developing a Compassionate Access Programme for patients and for this to be done in advance of the next HSE senior management meeting on 25 August,” said Fine Gael Parliamentary Party chairperson Micheál Carrigy TD.

Labour Senator Laura Harmon said: “Providing access to Skyclarys is a matter of urgency. Government inaction on this has led people living with the condition to lose abilities that could have been otherwise protected.

“The State must intervene and resource the HSE to provide this vital medication, not sit on their hands due to costs,” she said.