O’Shea Calls for Urgent Progress on Access to Treatment for Friedreich’s Ataxia

Fine Gael TD for Cork North West John Paul O’Shea has called for urgent progress between the HSE and pharmaceutical company Biogen to ensure public access to a treatment for a rare neurodegenerative condition affecting patients in Ireland.

Deputy O’Shea said that families affected by Friedreich’s Ataxia are currently facing unnecessary delays in accessing potentially life-changing treatment, and that all parties must now move quickly to conclude ongoing discussions.

He highlighted that around 200 people in Ireland are living with Friedreich’s Ataxia, a progressive condition that causes damage to the nervous system and leads to worsening difficulties with coordination, balance, speech, vision and hearing.

The treatment Skyclarys is the first approved therapy shown to slow progression of the disease, with clinical evidence suggesting it may reduce the rate of progression significantly. It was approved for use in Europe in February 2024, with several EU countries, including Spain, France and Italy, already providing reimbursement through their public health systems.

Deputy O’Shea noted that the National Centre for Pharmacoeconomics has recommended that Skyclarys be considered for reimbursement, while the application remains under review by the Health Service Executive (HSE).

Deputy O’Shea said “People living with rare diseases cannot be left waiting indefinitely for access to treatments that can make a meaningful difference to their quality of life and disease progression. Every delay matters.”

Deputy O’Shea added that ongoing engagement between the HSE and Biogen must now be accelerated to ensure a timely resolution, and confirmed he will continue to raise the matter with both parties.

He concluded that the priority must be ensuring that patients and families affected by Friedreich’s Ataxia in Ireland are not left behind while administrative and pricing discussions continue.