The news that the HSE had approved funding for the Skyclarys drug to treat Friedreich’s Ataxia sufferers was greeted with relief by families of 200 sufferers throughout Ireland, and in North Cork the many friends and supporters of the Coady family, Lisgriffin were ecstatic that the long campaign had borne fruit. Paudie Coady will now be able to access the drug which will allow him to live with the disease which claimed the life of his brother Rory.
The news followed several weeks of campaigning against the HSE Drugs Group recommendation not to approve Skyclarys, and Craig Coady had been on a dizzying round of media interviews, highlighting the urgent need for the HSE to go back on its decision and instead approve the drug for reimbursement. He said this week that he had been fearing the worst and was bracing himself for disappointment, but was overjoyed to get good news. He added that he was exhausted from the non-stop campaigning, and hoped it wouldn’t be too long before the drug which Paudie needs so urgently is received.
Minister for Health, Jennifer Carroll MacNeill, said on Tuesday that she had asked the HSE and Biogen to begin work immediately on rolling out Skyclarys for the 200 sufferers in Ireland, and Taoiseach Micheál Martin said that the Minister for Health and the Government will work to support the roll-out of the drug as soon as possible.
Last Friday evening, a Walk in Solidarity with Paudie was held in Mallow, with over 1,000 people gathering on Mallow Bridge before walking in silence through the Town Park and on to St Mary’s Church where Craig spoke to the attendance, and candles were placed on the wall outside the church. A walk was held in Cork city at the same time, and also attracted a big turnout.