Call Over Access to Drug to Treat Friedreich's Ataxia

Sinn Féin leader Mary Lou McDonald has directly called on the Irish government to make a swift decision regarding access to Skyclarys, a drug intended to treat Friedreich's Ataxia. McDonald expressed concern that the drug's consideration might be repeatedly deferred to new committees, prolonging the decision-making process.

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scheduled for consideration at a meeting on Tuesday, but the worry is that it will be referred on to yet another committee, another group for another round of consultation and decision

Friedreich's Ataxia is a rare, inherited neurological condition that progressively damages the nervous system, leading to severe impairments in mobility, balance, and coordination. Skyclarys is recognized as the first and only pharmaceutical treatment authorized in the European Union that clinical trials suggest can slow the progression of symptoms associated with this debilitating disease. Several European countries already provide public funding for this treatment.

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time [was] of the essence

McDonald highlighted the critical nature of the situation, noting that "time is of the essence" due to the progressive and debilitating nature of the disease. She urged the government, led by the Taoiseach and Tánaiste, to "simply make the decision," emphasizing that "sufferers of Friedreich's Ataxia cannot wait any longer."

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led by the Taoiseach and the Tánaiste, to simply make the decision

This call follows a recent legal challenge where a campaigner with the condition initiated judicial review proceedings against the Health Service Executive (HSE) over delays in reimbursing Skyclarys. The High Court has granted permission for this review, underscoring the ongoing struggle for patients to access potentially life-altering treatments.

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sufferers of Friedreich's Ataxia cannot wait any longer