'There is treatment... but we just can’t get it'

Síofra Grant

Friedreich’s Ataxia, a rare inherited neurodegenerative disorder, has been making headlines as Irish people diagnosed with the disease campaign for access to a life changing medication. The drug is Skyclarys, which was approved for use in 2023 by the FDA in the US. Shortly after it was approved for use across the EU.

Countries including Spain, Italy and France have made the decision to take the financial burden off the shoulders of those with the condition by reimbursing the cost through their health services. So far, Ireland has not, which for the 200 people with FA in the country is a tragedy.

“I’m so annoyed, because like why not?” says Shanice O’Reilly, a Mullingar woman living with the disease and campaigning for the government to reimburse the cost of the drug.

“There are so many other diseases, like MS, which is a sister to FA, that have treatment, but we don’t, we don’t have anything.

“Overall I’m just so annoyed because there is treatment out there but we just can’t get it.”

Since her diagnoses, Shanice has befriended FA’ers, as she calls them, across the world.

She’s been following the progress of some of her friends in America who have been using Skyclarys. While she is happy for them, it’s painful to witness the success of the drug when she can’t access it.

“They send me videos and pictures because I like to keep in touch with their treatment and I asked, would you recommend us fighting for this? “They were like ‘yeah, absolutely’. The drug can do a lot of things but the main one is it can slow down the progression of FA by 50%, giving us all more time.

“The speech is a huge one, as you may tell, my speech is a bit off. It can help with making it more audible and understandable. The normal person with FA, if they’re talking for a long time, their voice can start to cut out and start to sound a bit more croaky. But the treatment stops all that and my friend told me that.

“One lad said that it helps with his coordination and even pointing he doesn’t shake as much; he’s a lot more stable.”

Shanice wants to ask the government to consider how much the drug could change lives for FA’ers.

“What would you do if it was your own sister, or your daughter, or cousin or friend going through this? What would you do? Would you just sit there and say no and run away from them? Or would you help them?

“I look at my family and it’s hard on them because when I constantly fall in the bathroom, they have to help me off the floor. It’s impacting them, their backs, and their mental state, it’s hard on them, not just me.”

Shanice feels abandoned by the government failure to support her and others with the condition.

“It feels like they are saying there’s only 200 of you, why would we even bother. Do you want us to just die? A lot of us are working and trying and a lot of us go to college.”

The cost of Skyclarys is the problem: according to the National Centre for Pharmacoeconomics, it would cost the government about €280,000 per person per year for the treatment – €130 million over five years to reimburse treatment for all citizens living with FA.

The budget for drug reimbursement in Ireland exceeds €3 billion, according to the Department of Health.

HSE statement

In a statement to the Westmeath Examiner, the HSE detailed the current status of the Skyclarys decision and details of drug approval. “The first step in the process is the submission of a Rapid Review dossier (a clinical and economic dossier) to the National Centre for Pharmacoeconomics (NCPE) for assessment.

“The HSE received the NCPE Rapid Review assessment report on 29 August 2024. The NCPE advised the HSE that a full Health Technology Assessment (HTA) was recommended to assess the clinical effectiveness and cost-effectiveness of omaveloxolone compared with the current standard of care.

“The HSE commissioned a full HTA on 25 September 2024 as per the agreed processes. The HSE received the NCPE HTA Report on 16 December 2025. The NCPE recommends that omaveloxolone not be considered for reimbursement. The HSE Corporate Pharmaceutical Unit (CPU) is the interface between the HSE and the pharmaceutical industry in relation to medicine pricing and reimbursement applications. The HSE CPU has met with the applicant to discuss their application and commercial engagement remains ongoing.

“The Drugs Group is the HSE’s national committee that makes recommendations on the pricing and reimbursement of medicines. The membership of the HSE Drugs Group includes public interest members.

“The HSE Drugs Group reviews pharmacoeconomic reports along with the outputs of commercial negotiations and any patient group submission(s) received. The HSE Drugs Group considers all of the evidence and makes a recommendation to the HSE senior leadership team.

“The decision-making authority in the HSE is the HSE senior leadership team. The HSE senior leadership team decides based on all the demands it is faced with (across all services) whether it can fund a new medicine, or a new use of an existing medicine, from the resources that have been provided to it in line with the Health (Pricing and Supply of Medical Goods) Act 2013.”