HSE Approves Skyclarys for Patients with Freidreichs Ataxia in Ireland
The drug costs €288,000 per patient a year, and a HSE group recently recommended against funding it.
- On Tuesday, the Health Service Executive Senior Management Team approved reimbursement for Skyclarys, a drug treating Friedreich's ataxia, following a substantially improved financial offer from manufacturer Biogen.
- The HSE Drugs Group had previously recommended against funding the treatment over cost-effectiveness concerns, but substantive engagement between the HSE and Biogen resulted in a reversed position.
- About 200 people in Ireland live with Friedreich's ataxia, a progressive neurodegenerative condition. Advocates describe Skyclarys as a "lifeline" that can slow disease progression by up to 55 per cent.
- Taoiseach Micheál Martin welcomed the decision, stating "the Government will fully support this decision." Biogen and the HSE are now finalizing administrative arrangements to underpin reimbursement.
- This approval marks a turning point for patients, as Skyclarys becomes the first treatment available in Ireland for Friedreich's ataxia, ending months of uncertainty for families.
14 Articles
14 Articles
HSE approves reimbursement for Friedreich's ataxia drug
A drug approved for reimbursement by the HSE after a hard-fought campaign will bring life-changing benefits to hundreds of people in Ireland. Over 200 people across the country live with Friedreich's ataxia, a rare genetic disorder which causes damage to the spinal cord, cerebellum, and peripheral nerves and can lead to heart problems. It worsens […]
HSE approves Skyclarys for patients with Freidreichs ataxia in Ireland
A major breakthrough has been announced for families living with Friedreich’s ataxia after the HSE approved funding for the drug Skyclarys this afternoon. The decision now means that people in Ireland living with the rare and devastating neurological condition will finally be able to access the treatment through the public health service. It comes after […]
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