Father devastated after HSE group rejects funding for son's drug
The father of a boy with Friedreich’s Ataxia has spoken of their family’s devastation at a decision by the HSE Drugs Group to recommend that the drug Skyclarys, for Friedreich's Ataxia, should not be covered by the HSE.
The recommendation will now go to a meeting of the HSE senior management team on August 25th for a final decision.
Around 200 people in Ireland are living with the rare neurological disease and have been campaigning for the drug to be made available by the HSE. It is the first treatment for Friedreich's Ataxia.
Craig Coady lost his son Rory (13) to the disease last September. His other son Paudie (16) also has the condition and had been hoping to benefit from the drug.
“We had been hoping the HSE would do the right thing and reimburse the cost for the drug. When I told Paudie his face just dropped and I feel I've let him down. He's already said to me before, ‘it's okay Dad, if I do die, I'll be with Rory,’ he told RTÉ radio’s Morning Ireland.
“The HSE...
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