Biogen has been asked to make Skyclarys available on compassionate grounds ahead of a vital HSE meeting, as Craig Coady’s campaign for his 16-year-old son enters what may be its most important week.
Fine Gael representatives, including Cork East TD Noel McCarthy, made the request during a meeting with the drug manufacturer on Monday, August 17th. It followed a recommendation from the HSE Drugs Group that the cost of Skyclarys should not be covered. The recommendation is due to be considered by senior management of the HSE on Tuesday next, August 25th.
For Craig, however, the case cannot be lessened to a discussion about price, evidence or reimbursement. At home in Lisgriffin, just outside Buttevant, he is witnessing Friedreich’s ataxia take abilities from his son Paudie in real time.
Speaking to The Avondhu on Friday, Craig described what continues to make him get up and go.
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