Skyclarys, a Disease-modifying Drug for the Rare Condition Friedreich's Ataxia, in a Bid to Secure Access for Patients After the HSE Refused

Fine Gael TDs Micheál Carrigy, Catherine Callaghan, Seán Kyne, David Maxwell, Noel McCarthy, John Paul O'Shea and Senator Noel O'Donovan met with Biogen, the biotechnology company that makes the drug. The treatment costs €288,000 per patient per year and is not available to around 200 patients in Ireland. The drug was approved by the European Medicines Agency in February 2024 and has been made available to patients in other European countries.

It is the only licensed treatment for Friedreich's Ataxia. Pressure has been mounting on government leaders to intervene and reverse a HSE decision recommending against funding. Last week, 47 members of the Fianna Fáil parliamentary party signed a letter to Health Minister Jennifer Carroll MacNeill, Taoiseach Micheál Martin, Tánaiste Simon Harris and HSE Chief Executive Ann O'Connor calling for the decision to be reversed.

Carrigy said the objective of the meeting was to appeal to Biogen to engage fully with the HSE on what is possible to get patients access to the drug. Biogen was also asked to consider developing a compassionate access programme for patients before the next HSE senior management meeting on 25 August. We each have had a lot of contact with patients affected by this rare disease, as well as their families and advocacy groups and understand that the HSE's drug group's recommendation not to cover the cost of Skyclarys is devastating for them, said Carrigy. Emily Felix, a trainee solicitor from Co Kilkenny who has campaigned for approval of the drug, has called on the public to attend a peaceful protest at Dublin's Garden of Remembrance on Sunday at midday.