Skyclarys: HSE to reconsider Friedreich’s Ataxia drug funding

When will a decision on Skyclarys be made?

Around 200 people in Ireland live with the rare neurological disease and have campaigned for the drug to be made available on the public system.

The group had initially recommended against covering Skyclarys, but will now consider a report from the Rare Diseases Technology Review Group that supports its introduction.

At the current price, the drug would cost around €280,000 per patient per year, with a five-year budget impact of roughly €130m.

Last December, the National Centre for Pharmacoeconomics advised against funding it on cost-effectiveness grounds, an issue playing out against wider pressures on Ireland's life sciences sector.

A final decision will come when the recommendation goes to the HSE Senior Management Team on 25 August.

Campaigners recently met Minister for Health Jennifer Carroll MacNeill, while manufacturer Biogen said it continues to engage with the HSE, according to RTÉ News.

The move follows a High Court decision this month granting Emily Felix, who has Friedreich's Ataxia, permission to challenge what she called a delay in accessing the treatment.