n 25 August 2026 the HSE Senior Management Team approved the reimbursement of omaveloxolone (Skyclarys®, Biogen) for patients with Friedreich’s Ataxia, a rare progressive neurological condition. The decision followed a substantial reduction in the asking price by Biogen, confirmed by HSE Chief Clinical Officer Dr Colm Henry on RTÉ. The final price is commercially sensitive and has not been disclosed publicly. Prior to the price reduction, both the NCPE and the HSE Drugs Group had recommended against reimbursement on cost-effectiveness grounds. 2
Reporting on 12 August 2026, RTÉ described the NCPE’s position: that the price being charged by Biogen was not cost-effective, and that the HSE Drugs Group had met twice to consider the evidence. Professor Michael Barry stated the HSE leadership team was due to make a final decision on 25 August and that in “many cases” the senior leadership team accept the NCPE recommendation. 1
The Irish Times editorial of 25 August confirmed the HSE described the outcome as a “substantial reduction in the asking price”. Analysis by Gavan Reilly in The Journal described the sequence: Biogen named a price (€288,000 per patient per year); the HSE said no; Biogen returned with a substantially reduced offer; the deal was done. Minister for Health Jennifer Carroll MacNeill stated that “there was a substantially improved offer from the manufacturer in the last seven days” following “extremely intensive negotiations”. Campaigning and political pressure had been intense throughout, but the trigger for the approval was the price reduction. 3
Blueteq comment: the case underlines the importance of patient-level tracking once a medicine is approved: knowing exactly how many patients are receiving the medicine and at what cost.
