Pressure mounts as HSE to decide tomorrow on reimbursement of €280k-a-year Skyclarys drug
The Irish government and the HSE are facing pressure to approve the reimbursement of Skyclarys, a €280,000-a-year drug for Friedreich’s ataxia. Families and opposition politicians are urging the HSE to reverse a previous recommendation against funding the treatment.
Why it matters
The debate highlights the ethical and economic challenges of funding high-cost orphan drugs for rare, progressive diseases within public healthcare systems.
PRESSURE IS MOUNTING on the government ahead of a HSE senior management meeting on Tuesday which will decide whether to reimburse Skyclarys, a drug for Friedreich’s ataxia.
In recent weeks, a HSE drug group recommended against funding the treatment, which costs €288,000 per patient per year.
Friedreich’s ataxia is a progressive, neuromuscular disease that mainly affects the nervous system and the heart. It is a hereditary disease caused by a gene mutation.
While there is no cure for the disease, Skyclarys has been found to slow the disease progression and improve neurological function.
Taoiseach Micheál Martin met families affected by the rare genetic disorder last week .
Speaking about that meeting, Minister of State Christopher O’Sullivan, who was also in attendance, said Emma O’Shea and her family spoke of the loss they have already experienced and the importance of the drug Skyclarys being approved in Ireland.
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