A group of more than 60 Fianna Fáil politicians have called on the HSE to reconsider its refusal to fund a drug for the rare disease Friedreich’s ataxia (FA).The disease causes progressive damage to the nervous system. Individuals with the condition have a shorter-than-average life expectancy. Approximately 200 people have FA in Ireland. In February 2023, the drug omaveloxolone, branded as Skyclarys, was approved in the US for the treatment of the disease. Europe followed suit 12 months later. Skyclarys is not a cure, but patients and advocates say it has the ability to slow the progression of FA by up to 55 per cent.Last December, the National Centre for Pharmacoeconomics (NCPE) recommended that the drug not be considered for reimbursement by the HSE as it would cost around €280,000 per patient annually.The HSE Drugs Group upheld the NCPE recommendation, stating there are “limitations and uncertainties associated with the available clinical efficacy data”. The HSE also said the current price for the drug is “substantially above the level typically regarded as cost-effective in Ireland having regard to the limited efficacy of the drug”.In a letter sent to the Taoiseach Micheál Martin, Tánaiste Simon Harris, Minister for Health Jennifer Carroll-MacNeill, the Independent Minister of State Seán Canney and HSE chief executive Anne O’Connor, the group of Fianna Fáil politicians rejected the HSE stance. The signatories included the Minister of State Catherine Ardagh, TDs, senators and three of Fianna Fáil’s four MEPs, Cynthia Ní Mhurchú, Barry Cowen and Billy Kelleher. The letter, seen by The Irish Times, states that seven other European countries have approved the treatment for reimbursement. They accused the NCPE and the HSE of not giving patients with this “rare and progressive conditions a fair hearing within a reasonable timeframe”. They added: “We do not believe this outcome reflects what the public or the Government wants for people living with rare diseases in Ireland . . . We are asking you to use whatever powers are available to you to ensure that all necessary resources and mechanisms are made available to families affected by Friedreich’s ataxia. “We would point to the precedent set with Spinraza in 2019, where the HSE senior leadership team exercised its authority to override a negative recommendation. We believe the same approach is warranted here.”