Pressure mounts on HSE funding decision for Friedreich’s Ataxia drug
The row over access to Skyclarys for people with Friedreich’s Ataxia is intensifying ahead of an HSE decision next week.
Patients and families say Ireland is falling behind other countries where the treatment is already available.
Campaigners argue the drug could slow the progression of the rare neurological condition and are urging the HSE to approve access without further delay.
On August 11th, the HSE drugs group did not recommend the drug for reimbursement, largely based on a review by the National Centre for Pharmacoeconomics (NCPE).
The HSE drugs group said the cited figure of €280,000 per year per patient, which Skyclarys maker Biogen now disputes, raised concerns about “cost-effectiveness".
The group also referenced “limitations and uncertainties associated with the available clinical efficacy data”.
A series of vigils, meetings, and demonstrations is set to be held in the lead-up to the HSE senior management’s decision on whether to approve funding for the drug on Tuesday, August 25th.
The drug is designed to slow down the progressive degeneration of the nervous system that occurs with Friedreich’s ataxia. It's estimated that about 200 Irish patients suffer from Friedreich's ataxia.
Skyclarys was approved by the European Commission in February 2024, and is now available in 11 European countries according to Biogen.
Independent Ireland leader Michael Collins is hosting a meeting in Dublin on Thursday afternoon, where patients and families will meet politicians and clinical experts to discuss what's happening.
Collins called for talks "to get agreement in relation to Biogen for a price that's favourable to all and deliver the Skyclarys drug to the patients out there".
Last week 47 members of the Fianna Fáil parliamentary party, including a junior minister, wrote to Government leaders to reject the findings of the HSE drugs group on the Skyclarys drug. They described the country's drug reimbursement scheme as "not fit for purpose".