Protest in Dublin over Skyclarys reimbursment

Hannah Kate Costello

A protest in solidarity with Friedreich's ataxia patients will take place in Dublin today.

It is a rare, inherited neurodegenerative disorder that affects the nervous system and can lead to severe movement and coordination issues, often beginning in childhood.

The HSE Senior Leadership Team will make a final decision on reimbursing Skyclarys on Tuesday, after the Drugs Group recommended it not be funded. Skyclarys treatment is the first and currently only treatment designed for Friedreich's ataxia.

Sinéad Maher from Waterford is among those taking part. Her husband Jason, who is now 50, was diagnosed with the condition 24 years ago.

Speaking with Newstalk this morning, she says there is still hope the drug will be approved: "Well, I suppose once and once only the HSE senior management team has gone against the advice report back in 2019, so a precedent has been set."

"They have done it before; there's nothing stopping them from doing it again. They have the chance to make the right decision."

"I don't want to see after Tuesday, 'we will do x, y, z' if this doesn't go our way, because I'm hoping that on Tuesday and Wednesday we're celebrating."