'This cannot happen again' - Friedreich's Ataxia patients
Patients with Friedreich's Ataxia have called for change after their campaign for the reimbursement of the drug Skyclarys.
Friedreich's Ataxia patients have called for reform following their campaign to have the drug Skyclarys funded by the HSE. The HSE recently approved reimbursement for Skyclarys, following a more favorable financial offer from the drug company Biogen. Niamh Ní Hoireabhard, a patient affected by Friedreich's Ataxia, expressed concern that other rare disease patients may also need to campaign to secure similar treatments in the future.
Craig Coady, whose 13-year-old son passed away from the disease, expressed gratitude to Minister for Health Jennifer Carroll MacNeill for informing him of the decision before it was made public. Coady emphasized the unfairness of campaigning while grieving and called for changes to the legislation surrounding drug reimbursements.
Helen Kearney, another patient, noted that the decision provides her with more time to plan for future challenges.
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