Decision due on Skyclarys funding as Biogen reportedly makes lower price offer

Families affected by Friedreich’s ataxia remain hopeful as the HSE considers the treatment’s cost and benefits for patients

Friedreich's Ataxia campaigners protest in Dublin to push for Skyclarys approval in Ireland. File picture: Sam Boal/Collins Photos

A decision is expected today on funding the drug Skyclarys for people with Friedreich's ataxia, with reports indicating that a new price offer has been made by the manufacturer.

Up to now, the HSE has raised questions about the benefits for patients when balanced against what it said was the high estimated cost of €280,000 per patient per year.

The pharmaceutical company Biogen has disputed this figure, but is now understood to have made a new and lower offer, according to reports on RTÉ on Tuesday morning.

Families and patients affected by the condition who spoke to the Irish Examiner on Tuesday were unaware of the details of any potential new offer, but remain hopeful that the HSE can decide to fund the treatment.

It is the only licensed treatment and, while it is not a cure, it has been shown in studies to slow the progression of the disease. This includes slowing damage to the voice and vocal cords.

The pharmaceutical company Biogen has disputed the €280,000 figure, but is now understood to have made a new and lower offer. Picture: AP Photo/Steven Senne, File

Tánaiste hopes for ‘clarity’

Meanwhile, Tánaiste Simon Harris has said he hopes today’s HSE decision will bring “clarity” to patients living with Friedreich’s ataxia.

Speaking in Dublin, Mr Harris said he understood it was an “extraordinarily difficult, anxious and worrying time” for patients, families and communities impacted by Friedreich’s ataxia.

“I do hope that today can bring clarity to this issue. Clarity for patients, clarity for families, clarity for doctors,” Mr Harris said.

The Tánaiste said the process for deciding whether to publicly fund the purchase of Skyclarys was independent of the Government, adding that it is important that the process is “robust”.

Mr Harris said he was speaking with “full empathy, full respect” and that, while Skyclarys is the drug needed today, there will be a need for other new drugs for other patients into the future.

“Having a robust process in place that gets the best outcome possible to ensure as many of our citizens as possible have access to innovative medicine is important,” Mr Harris said.

The Finance Minister added that there needed to be a “broader conversation” at another time about how Ireland and the EU provide funds for new medicines.

“Today, in relation to the patients hoping for good news on Skyclarys, I know how anxious a day it is, and I really hope that later today there'll be clarity brought to the matter.”