TDs call on HSE Drugs Group to reveal why they decided not to fund Skyclarys

It follows the story of the Coady family in Cork who lost their son Rory, 13, to Friedrich’s ataxia in September. Their 16-year-old son, Paudie, also has the condition

Craig Coady: '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.' Picture: Chani Anderson

Politicians have called for “transparency” around the HSE Drugs Group decision not to recommend the drug Skyclarys, amid calls for the Oireachtas Health Committee to be recalled from its summer break.

Skyclarys is used to treat Friedreich’s ataxia, a rare genetic disorder that causes progressive damage to the nervous system and can lead to heart complications.

It came to public attention following the heartbreaking story of the Coady family in Cork. Craig Coady lost his son Rory, 13, to Friedrich’s ataxia in September. His 16-year-old son, Paudie, also has the condition.

The HSE Drugs Group met on Tuesday, with a decision taken not to recommend the drug’s reimbursement. It followed a decision taken by the group last month to defer a decision so that the Rare Diseases Technology Review Group could examine Skyclarys.

Despite the review group's report supporting its introduction, the Drugs Group disagreed. Its recommendation will be discussed by the HSE’s senior leadership team on August 25.

Sinn Féin leader Mary Lou McDonald called on the HSE leadership and the health minister to “ensure full transparency” on how the decision was reached.

“Skyclarys has been approved across the EU since February 2024,” she said. “It is already publicly funded or accessible in several European countries. 

So, the question that must be answered clearly is why was the decision made to deny access to the drug for those suffering from Friedreich’s ataxia living in Ireland?

“The meeting of HSE senior management scheduled for August 25 must be brought forward. The Minister for Health must ensure that the meeting happens immediately — no more delays.”

Health sources told the Irish Examiner that the Drugs Group is a “transparent” process, with detailed minutes of the meetings published two months after they take place. However, they conceded that communication with families must be improved.

Independent Ireland leader Michael Collins, meanwhile, wrote to the chairman of the Oireachtas Health Committee, Pádraig Rice, calling for it to meet urgently with the HSE Drugs Group and senior HSE decision-makers before August 25 to discuss Skyclarys.

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However, the Irish Examiner understands that a meeting is unlikely to happen as discussions around individual drugs may not fall under the committee’s remit.

Mr Coady said he was heartbroken and surprised by the decision. He met with Taoiseach Micheál Martin in Cork in recent weeks to discuss the drug.

“I met Micheál Martin, and he told me he was going to do everything in his power to get the drug passed,” Mr Coady said.

“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.

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 game-changer, asking: “Do they communicate with other countries?”

“Are they saying that the 10 countries that reimburse it are wrong?”