Discussions underway with the company responsible for Friedreich’s Ataxia drug Skyclarys according to Carlow Kilkenny Fine Gael TD.
The HSE Drugs Committee has recommended that the State not fund the drug with a final ruling on this due from the health organisation next Tuesday.
Earlier we heard how supporters are set to gather in Dublin on Sunday for a march to highlight the situation faced by the 210 people in Ireland with the condition, a number of whom in the Carlow and Kilkenny areas have recently outlined their plight on KCLR.
Costings are reportedly set at approx €280,000 per patient each year – Deputy Catherine Callaghan says she met with company representatives yesterday to discuss this and she outlined more on The KCLR Daily;
https://soundcloud.com/kclr96fm/the-kclr-daily-deputy
