A demonstration took place in Dublin city centre as campaigners called on the Health Service Executive (HSE) to approve reimbursement for Skyclarys, a medication used in the treatment of Friedreich’s Ataxia.
Friedreich’s Ataxia is a progressive neurological disorder that affects coordination, balance, and speech, with no current cure available. The demonstrators, including patients and their families, emphasized the urgent need for access to this treatment to manage the condition and improve the quality of life for those affected.
Skyclarys has shown promise in treating symptoms and slowing the progression of Friedreich’s Ataxia, yet it remains unavailable under the HSE’s reimbursement scheme. Campaigners argue that the delay in approval is impacting patients who are in need of immediate intervention.
The HSE’s decision on the reimbursement status of Skyclarys is awaited, and campaigners continue to push for swift action to ensure timely access to the drug for those living with this debilitating condition.
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