A Kilkenny woman with Friedreich’s Ataxia is among those left bitterly disappointed by the HSE Drugs Group’s recommendation on Skyclarys.
Many in several European countries can avail of the costly treatment for the rare, inherited genetic disorder and there had been hopes that the Irish State would follow suit in funding it for those in need of it here.
However, a meeting yesterday concluded that the price of the drug is substantially higher than what’s considered cost-effective.
Their decision will now go before senior management at the health body for a final ruling on the 25th of August.
28-year-old patient representative Emily Felix from Gowran in Kilkenny says she’s; “Utterly devastated, not only just for me but for everyone across the country suffering with Fr, it’s another devastating blow in a very short space of time, we’re just getting one bad story after another, you’d be exhausted from the whole thing, it’s very hard to keep going”.
She adds; “The HSE leadership team can make the right decision and they can reimburse this drug on the 25th and I have to put my hope and faith into the right decision being made on that day”.
UPDATE 1pm, Wed 12th Aug: Emily spoke on The KCLR Daily – if you missed her conversation with our Brian Redmond, listen back here;
https://soundcloud.com/kclr96fm/the-kclr-daily-emily-felix-on
