HSE set to decide whether €280,000-a-year Skyclarys drug will be funded

Emily Felix , Emma O’Shea and Niamh Ní Hoireabhaird with Friedreich's Ataxia join the campaign to protest in Dublin to push for Skyclarys approval in Ireland. FIle picture: Sam Boal/Collins Photos

The HSE’s senior management is expected to decide today whether Skyclarys will be funded for patients in Ireland.

The HSE drugs group last month said the estimated cost of €280,000 per patient per year for Skyclarys was too high and questioned the effectiveness of the treatment for patients.

Skyclarys is an oral medication produced by biotech firm Biogen. The €280,000 per-patient annual cost cited by the HSE would mean a cost to the State of around €134 million over a five-year period. Biogen has disputed that figure, while the HSE has refused to comment on negotiations with Biogen.

It is the first known drug that can slow the neurological deterioration associated with the rare genetic disorder Friedreich’s ataxia.

Around 200 people in Ireland are living with the disease.

Taoiseach Micheál Martin has met with families affected and has faced calls to intervene, though Government sources have insisted the process is non-political.

Rare Disease Ireland urges negotiations 

On Monday, Rare Disease Ireland urged the HSE to continue negotiations on the price of Skyclarys, in the first such intervention the group has ever made.

Chief executive Vicky McGrath said the decision to intervene on the issue came after considering the potential impact of Skyclarys on patients it supports.

“RDI has never publicly called for the reimbursement of a single medicine," said Ms McGrath.

“But this week I keep thinking about the families I've sat across from who have watched someone they love lose ground, month by month, to a disease that finally — finally — has a treatment, only to be told the system isn't quite ready to say yes.” 

Ms McGrath said its message to the HSE was rigorous and fair, noting concerns already expressed by the HSE about the efficacy of the treatment.