Price talks 'ongoing' as call for HSE support to treat Longfordian and 200 FA patients

Price negotiations for the Syclarys medication for the rare, neurodegenerative disease Friedrichs Ataxia (FA) are ongoing, according to Longford TD Micheál Carrigy.

The Fine Gael representative said he raised the issue and he asked Minister for Health Jennifer Carroll MacNeill if there was any update on discussions between the HSE and the marketing authorisation holder, Biogen (Idec) Ireland Limited.

Deputy Carrigy has stated that he feels the 200 patients, including North Longford woman FA sufferer Kiara Lynch, should be able to access the treatment.

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Kiara was diagnosed with FA at the age of 13 and for more than 28 years she has been battling what she describes as 'the relentless progression' affecting all of her abilities.

The effects of FA are having a significant adverse impact on her body and Kiara said she has 'cardiac issues, lung issues, bladder issues, pressure sores, and constant pain in my neck and back'.

Deputy Carrigy said Minister Carroll MacNeill responded to his question asking for an update by saying "the price negotiations were ongoing and that they were confidential" so that HSE cannot comment on them at present.

He added, “I thank the Minister for this update, it is positive to see the price negotiation are ongoing.

"People deserve to be able to access medication that can improve their living conditions and capabilities, this is something I feel strongly about.”

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Minister Carroll MacNeill said the State recognises the importance of timely access to innovative medicines for patients in Ireland, particularly those living with rare diseases like Friedreich’s ataxia.

"I recently attended a briefing in Leinster House on Friedreich’s ataxia, where I met patients and their family members, and heard directly about their experiences."

Minister Carroll MacNeill said Skyclarys was granted marketing authorisation in the EU by the European Medicines Agency in 2024 for treatment of Friedreich’s ataxia in adults and adolescents aged 16 years and older.

She stated a pharmaceutical company must submit an application for pricing and reimbursement to the HSE’s Corporate Pharmaceutical Unit once marketing authorisation is granted, as reimbursement applies only to licensed indications.

Minister Carroll MacNeill said applicants must engage fully throughout the process to enable timely consideration.

"Under the Health (Pricing and Supply of Medical Goods) Act 2013, the HSE has statutory responsibility for decisions on the pricing and reimbursement of medicines.

"Therefore, I have asked them for an update on the Skyclarys® pricing and reimbursement application.

"They have advised that the report of the Health Technology Assessment conducted by the National Centre for Pharmacoeconomics was received by the HSE on the 16th December 2025.

"The HSE invited Biogen (Idec) Ireland Limited, to commence price negotiations and offered a range of dates to the company.

"The HSE have advised this meeting took place on the 12th February 2026, and as of April 16th a commercial proposal from the company remains outstanding.

"The negotiations are commercially confidential and the HSE cannot make any comment on possible outcomes from the ongoing process. It is important to note that the negotiation process cannot recommence until a commercial proposal is received by the HSE."