Skyclarys Decision Delayed: Patients Left Waiting
21 July - 16 mins
Podcast Series
iRadio's Groupchat
28-year-old Emily Felix joins Valerie on iRadio’s Groupchat after another crushing delay in the decision to fund Skyclarys for people living with Friedreich’s ataxia.
Emily explains what happened on July 14th, why campaigners travelled to the Dáil, and how they ended up finding out the “not yes, not no” outcome through social media, with no formal communication since.
She speaks about the irreversible impact of waiting with a progressive condition, why Skyclarys is already approved and reimbursed in other countries, and the frustration around transparency as the case moves to another review committee.
Series Episodes
