‘We cant wait anymore’ – Friedreichs ataxia campaigners to hold protest in Dublin after life-transforming drug delay

[People with Friedreich's Ataxia and supporters protest for medicine reimbursement, holding signs like "Don't Delay Medicine Today!"]Credit: Unknown

CAMPAIGNERS who say a drug is their “only hope” in fighting against a rare neurological disease are set to hold a protest.

The group is calling for the HSE to reimburse Skyclarys, a drug that can treat and slow the progress of Friedreichs ataxia.

Friedreichs ataxia (FA) is a rare neurological disease that causes nerve damage, muscle weakness and mobility loss.

It is believed that there are around 200 people with FA in Ireland.

Earlier this month, the HSE Drugs Group decided not to recommend cover for the Skyclarys drug.

Friedreichs ataxia demonstrators will gather at the Garden of Remembrance in Dublin from 12pm on Sunday, August 23.

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The demonstration will then move down to Customs House Quay, where there will be speeches by campaigners Niamh N Hoireabhaird, Eric Fitzgerald, Sinad Maher, Emily Felix and Aoife Gavan.

The campaigners have shared their hope that the drug will be approved.

A final decision will be made by HSE senior management following a meeting scheduled for August 25.

Galway native, Eric Fitzgerald is a writer and was diagnosed with FA when he was 11-ears-od.

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The now 30-year-old said: “I need the HSE senior management team to approve the decision on Tuesday to finally bring Skyclarys into this country.

“It is the only hope for most of us to fight such a detrimental disease.

“Why Im doing it; because after so long of existing just to fade away, there is finally hope. Not just a hope, real treatment.

“That crazy dream of living a life that has been taken away from us is starting to seem real. We need Skyclarys. We cant wait anymore.”

It has now been over two years since evaluation began for Skyclarys reimbursement in Ireland.

Niamh N Hoireabhaird is a journalist from Co. Kildare and was diagnosed with FA when she was 13.

The 29- year-old said: “It has now been over 740 days since the evaluation process began, all the while people with Friedreichs ataxia have been progressively losing abilities – the abilities to walk, write, speak, eat, see, hear.

“It feels unimaginably cruel to me for there to be a scientifically-backed, progression-slowing treatment out there, but then for my country just to sit idly by and allow its own citizens to deteriorate.

“And for what? Money? Our lives are worth more than that.

Emily Felix who previously spoke to the Irish Sun about Skyclarys said: Its heartbreaking because without this drug, I know my life wont be a life worth living.

In the next few months I could lose my ability to swallow or my ability to speak.

Our lives are worth saving.

The group is set to protest from 12pm at the Garden of Remembrance on Sunday, August 23.