Friedreich's Ataxia patients treated appallingly, Irish Dáil hears

People living with Friedreich's Ataxia, a rare and progressive disease, have faced "appalling" treatment, the Irish Dáil heard Wednesday.

The HSE Drugs group yesterday deferred its recommendation on Skyclarys, a medication already approved in some European Union countries for treating the condition. Sinn Féin's Health Spokesperson David Cullinane emphasized that while medicines require assessment, the needs of patients suffering from Friedreich's Ataxia cannot be overlooked in the process. "People with Friedreich's Ataxia cannot wait any longer," he stated.

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medicines must be assessed but the needs of the patients cannot get lost in this process. People with Friedreich's Ataxia cannot wait any longer

Taoiseach Micheál Martin agreed that the situation is urgent and causes extreme trauma for those awaiting the drug's assessment. "I accept the devastation for families hearing this news yesterday, this is not the news they wanted to hear," he said. He stressed the importance of respecting the scientific processes for drug assessment but pledged to collaborate with the Opposition to advance the issue.

Last month, individuals with Friedreich's Ataxia protested outside Leinster House, highlighting their ongoing struggle for access to treatments. The deferral of the HSE's recommendation adds to the distress of patients and their families who have been anticipating a positive outcome for Skyclarys.

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I accept the devastation for families hearing this news yesterday, this is not the news they wanted to hear