Muscular Dystrophy Ireland Statement on Skyclarys Decision

Muscular Dystrophy Ireland stands firmly with every person and family in Ireland living with Friedreich’s ataxia following yesterday’s recommendation by the HSE Drugs Group that Skyclarys should not be funded through the public health system.

For people living with Friedreich’s ataxia, this is not simply a decision about a medicine or a budget. It is about time, opportunity, quality of life, and hope. Skyclarys is the first treatment approved for Friedreich’s ataxia, a rare, progressive and life-limiting condition. The possibility of a treatment that may alter or slow the progression of this disease is therefore profoundly important.

CEO Statement

Alan Breathnach, CEO of Muscular Dystrophy Ireland, said:

“Yesterday’s recommendation will be devastating news for people living with Friedreich’s ataxia and their families. We recognise that the HSE has to make difficult decisions about medicines and the resources available within our health service. But behind every assessment, every figure and every recommendation is a person whose life is changing.

Skyclarys is not a cure, and no one is suggesting that it is. But for people living with Friedreich’s ataxia, it represents an important opportunity in a condition where treatment options have historically been extremely limited. The fact that the medicine is authorised in Europe, and that other countries have found pathways to provide access, makes this news all the more difficult for people with Friedreich’s ataxia and their families in Ireland.  We are calling on the HSE and Government to use the time available before the final decision to exhaust every possible avenue to reach a sustainable agreement that gives people living with Friedreich’s ataxia access to this treatment”

The voices of individuals living with Friedreich’s ataxia and their families must remain at the heart of this process. They are the people who live with the consequences of these decisions every single day!

The Government has made a clear commitment to improving and expanding the care and treatment for people living with rare diseases in Ireland. Today, people living with Friedreich’s ataxia need to see that commitment translated into action.