A momentous day for the Friedreich ataxia community in Ireland

MDI welcomes the HSE’s decision to approve reimbursement of Skyclarys (omaveloxolone) for eligible adults living with Friedreich ataxia in Ireland.

This decision comes after months of campaigning which saw the whole community come together, with people across Ireland getting behind the campaign and supporting people living with Friedreich ataxia and their families.

Skyclarys is the first approved treatment for Friedreich ataxia. Although it is not a cure, it offers eligible people the opportunity to slow the progression of this rare, inherited and life-limiting condition. It brings hope for the future and the possibility of maintaining quality of life and independence for longer.

Since Skyclarys received European approval in 2024 and an application for reimbursement was submitted to the HSE in August 2024, the Friedreich ataxia community in Ireland has faced two years of anticipation, uncertainty and setbacks while awaiting a decision.

Throughout that time, people living with Friedreich ataxia, their families, advocates and supporters came together with incredible determination. They shared their stories, raised awareness, campaigned tirelessly and made sure their voices were heard. People across Ireland stood behind them.

MDI hopes that the reimbursement arrangements will now progress quickly through the final stages so that eligible people can access treatment as soon as possible.

For people living with a progressive condition like Friedreich ataxia, time matters. Over the past two years, while this treatment has progressed through the reimbursement process, their condition has not stood still. For some, that has meant further loss of function, movement, strength, speech and independence - losses that cannot simply be regained.

Today is a hugely important day for people living with Friedreich ataxia and their families, and for everyone who has stood alongside them, supported the campaign and helped make their voices heard.

MDI stands with the Friedreich ataxia community in welcoming this long-awaited decision and hopes that eligible people will now be able to access this treatment as soon as possible.