More politicians join campaign to cover cost of drug for 200 Irish patients
Craig Coady says Rory’s memory gives him the strength to continue fighting for his surviving son, Paudie. Picture: Chani Anderson.
The Taoiseach has been urged by yet more politicians to intervene on the provision of Skyclarys.
Skyclarys is the only drug approved for the treatment of Friedrich's Ataxia, a rare progressive neuromuscular condition affecting around 200 people in Ireland.
Last week, the HSE Drugs Group made its recommendation against the drug, raising concerns about “limitations and uncertainties” associated with the efficacy of the drug and its current price.
A final decision on the drug is expected to be made on August 25 by the HSE.
The father of a boy with Friedreich’s Ataxia said they he was shocked and heartbroken at the decision to recommend that the drug should not be covered by the HSE.
Craig Coady lost his 13-year-old son Rory to the disease last September, and his 16 year old son Paudie also has the condition.
Mr Coady said he was heartbroken and surprised by the decision: “I met Micheál Martin and he told me he was going to do everything in his power to get the drug passed.
“I was positive in July that it would be passed, but when it was deferred to the rare disease group I got a bit worried. Then they were very positive in their meetings and I started to get positive again.
Sinn Féin leader Mary Lou McDonald on Friday wrote to Micheál Martin asking that he take action.
“I am asking you, as Taoiseach, to intervene to ensure that there is full transparency around the HSE assessment, the findings of the Drugs Group and the basis upon which this decision was reached.
Independent Ireland leader Michael Collins said the Government should "cut the bullshit" around the drug.
He made the comments following a meeting with Emma O'Shea, a patient from Cork living with Friedreich’s Ataxia, who has been campaigning for access to Skyclarys.
“This is life and death. Patients like Emma are living with a devastating condition and every day matters. This isn't something that can be put off for four weeks or four months. The impact is happening right now," he said.
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