Huge relief for Friedreich's Ataxia sufferers as HSE approves Skyclarys

‘A CHANCE to build a future’ is what today’s decision of the Health Service Executive to reimburse the cost of the drug Skyclarys for people with Friedreich's Ataxia (FA) will mean for Bagenalstown’s Oisín Pollard (27).

Elaine Pollard, mother of Oisín, who was diagnosed with the progressive neuromuscular condition when he was aged nine, said the family are relieved and amazed at the decision and can “catch a breath” now after months of campaigning.

“Really and truly, it hasn’t sunk in,” she said. “It's just overwhelming today, really. I have no words kind of left.” The Pollard family has been campaigning alongside other people with FA for nearly seven months to have the drug approved by the HSE.

The campaign culminated in a large demonstration of ‘people power’ in Dublin city centre on Sunday 23 August, which Oisín and his family attended. It was physically demanding for Oisín to attend the protest, said Elaine, and he was exhausted by it, but it paid off.

“It's been a long road for all the young patients with FA and it's hard enough to live with the disease, let alone trying to campaign and push the government to make the right decision,” said Elaine.

Skyclarys is the first drug treatment to be approved to treat the estimated 200 people living with the condition in Ireland. It works by slowing down the progression of the disease, which causes nerve damage, muscle weakness and mobility loss.

It was approved by the European Medicines Agency in 2024 and Ireland began evaluating whether it could be reimbursed over two years ago.

Two weeks ago, the HSE Drugs Group recommended that the cost of Skyclary’s should not be covered by the Irish health system.

However, widespread political and public support for the FA community, in addition to a substantially improved financial offer from Biogen, the pharmaceutical company that produces Skyclarys, led the Department of Health to approve the drug for reimbursement on 25 August.

Minister of state at the department, Jennifer Murnane O’Connor, welcomed the news that the Skyclarys drug was approved for reimbursement by the HSE, saying that she hopes the decision “brings hope to those living with Friedreich’s Ataxia and their families.” Deputies Peter ‘Chap’ Cleere and Natasha Newsome Drennan also expressed their delight at the decision.

“Hopefully then, the next generation won't have to fight and that the process will be changed and it'll be easier for them,” said Elaine. “We shouldn't have had to come out publicly to tell our personal stories online.” 

“Thanks be to God the HSE came to their senses because they deserve it. They're incredible young people and they have so much to offer the community and the world.” 

Oisín will celebrate over the weekend, popping “a few bottle of champagne” with his parents Elaine and Niall and his extended family.

They are all looking forward to seeing the drug become available soon.

“The FA community are so strong now after coming together with this campaign. They're not going to be ever forgotten about,” said Elaine.

“This is their legacy now and they can build on it and give hope to all the other youngsters that are, maybe, newly diagnosed or in the early stages of Friedrich’s Ataxia. They have hope now for a future.”