# HSE approves Skyclarys reimbursement for patients

> Live situation record from CLSTR: https://clstr.news/situations/irish-hse-skyclarys-funding-dispute
> Updated: 2026-08-25T10:37:05.000Z. Sources: 12. Developments: 5.

The HSE Drugs Group had previously recommended against state funding for Skyclarys, a treatment for Friedreich’s ataxia, citing high costs of approximately €280,000 per patient annually. While the drug is approved by the European Medicines Agency to slow disease progression, advocacy groups and politicians urged the HSE to reconsider, arguing that cost should not be the overriding factor when lives are at stake.

On August 25, the HSE Senior Management Team approved the reimbursement of Skyclarys for patients in Ireland living with Friedreich’s Ataxia. The decision followed intensive discussions with the manufacturer, Biogen, which provided a “substantially improved financial offer” to the HSE.

Although the treatment is not a cure, it has the potential to slow the progression of the neurodegenerative disorder by up to 55 per cent. The condition affects approximately 200 people in Ireland, often leading to severe coordination and movement issues. Following the approval, Taoiseach Micheál Martin expressed support for the decision, while Tánaiste Simon Harris noted the importance of a robust statutory process for accessing innovative medicines.

## Timeline

### 2026-08-25: HSE approves Skyclarys reimbursement for Friedreich’s Ataxia patients

Ireland's HSE has approved reimbursement for the drug Skyclarys to treat Friedreich’s Ataxia following an improved financial offer from Biogen.

5 sources. https://clstr.news/cluster/hse-approves-skyclarys-reimbursement-for-friedreichs-ataxia-patients

### 2026-08-23: Irish HSE faces decision on €280k-a-year Friedreich’s ataxia drug

The Irish HSE faces intense pressure to decide on the reimbursement of Skyclarys, a life-changing but expensive drug for Friedreich’s ataxia, following emotional appeals from patients and Taoiseach Micheál de Á

4 sources. https://clstr.news/cluster/friedreichs-ataxia-families-march-in-dublin-for-drug-access

### 2026-08-17: Friedreich's ataxia campaigners to protest in Dublin over drug reimbursement

Campaigners will protest in Dublin this Sunday, demanding the HSE reimburse Skyclarys, the only approved treatment for Friedreich's ataxia, ahead of a key leadership decision on August 25.

2 sources. https://clstr.news/cluster/friedreichs-ataxia-campaigners-to-protest-in-dublin-over-drug-reimbursement

### 2026-08-14: Irish politicians urge HSE to fund Friedreich's Ataxia drug

Irish politicians are urging the HSE to fund Skyclarys, a drug for Friedreich's Ataxia, following a recommendation against reimbursement due to its €280,000 annual cost per patient.

4 sources. https://clstr.news/cluster/irish-politicians-urge-hse-to-fund-friedreichs-ataxia-drug

### 2026-08-11: HSE Drugs Group recommends against funding Skyclarys for Friedreich’s ataxia

The HSE Drugs Group has recommended against funding the drug Skyclarys for Friedreich’s ataxia patients in Ireland, despite its approval by the EMA and FDA to slow disease progression.

3 sources. https://clstr.news/cluster/hse-drugs-group-recommends-against-funding-skyclarys-for-friedreichs-ataxia

---
Cite as: HSE approves Skyclarys reimbursement for patients. CLSTR, https://clstr.news/situations/irish-hse-skyclarys-funding-dispute
