A woman diagnosed with Friedreich’s ataxia (FA) has spoken of her despair after finding out from social media that the Health Service Executive (HSE) had delayed its decision on funding a drug that could help her disease.Emily Felix (28) from Co Kilkenny was diagnosed with FA when she was 12. She is one of fewer than 200 people in the Republic of Ireland with the progressive neuromuscular condition.In February 2023, the drug omaveloxolone, branded as Skyclarys, was approved in the US for the treatment of the disease. Europe followed suit 12 months later.Skyclarys is not a cure, but Felix’s family say it has the ability to slow the progression of FA by up to 55 per cent.Despite its EU approval, the drug remains out of reach in Ireland.Last December, the National Centre for Pharmacoeconomics (NCPE) issued an assessment on the “cost-effectiveness” of Skyclarys. It recommended the drug not be considered for reimbursement by the HSE, adding that it would cost around €280,000 per patient annually.On July 14th, the HSE Drugs Group did not recommend the drug for reimbursement and referred the application to the Rare Diseases Technology Review Committee (RDTRC) “to seek further input”. Felix has taken legal action over alleged delays by the HSE in deciding whether to fund the drug used to treat the rare condition.She is asking the High Court to direct the HSE to finalise its decision on the approval, reimbursement and funding of omaveloxolone. In bringing the case, Felix ultimately seeks access to the medicine for herself and others with FA.Judge Cian Ferriter on July 28th granted permission to Felix to pursue the judicial review challenge against the HSE and the Minister for Health Jennifer Carroll MacNeill.Felix and about 20 other people with FA, along with their family members, friends and colleagues – about 100 people in total – attended Leinster House to be present when the decision was made by the HSE Drugs Group on July 14th.Felix said they went to “show how serious the issue was and how eager we were for a decision that day”. With regard to the decision, she said “we needed that to be a yes”.She said they waited for hours to hear the result of the decision. In the end, though, they found out from social media.Those with the condition have still not received any official correspondence from the HSE directly.“It’s probably the worst part of it,” says Felix. “It’s so insulting. We’re finding out this information at the same time the rest of the public is finding it out.”Acknowledging the fact that the Dáil is now in recess, she says: “There’s going to be no one speaking about this for two months. There’s no pressure at all. We can’t do anything . . . it’s disgraceful.”Felix has lost sensation below her knees and has undergone numerous surgeries for scoliosis. She also has a heart condition and experiences severe fatigue.Her symptoms have deteriorated “massively”.She needs assistance when being transferred from her wheelchair and has suffered numerous falls in recent months.Her swallow has become “really bad”, causing her to choke “probably every second day”.“I’m just so tired every day from speaking and I can feel how hard it is now to keep going,” she said.“This delay is having permanent consequences and we – me and the 200 others – can’t wait. We literally don’t have time on our side.”In a statement, the HSE said the “next step in the process is to seek further input” from the RDTRC, which provides additional expert advice where the Drugs Group is not in a position to progress a recommendation supportive of reimbursement. The RDTRC is independent of the NCPE.A spokeswoman for Tallaght University Hospital said it and its clinicians in the National Ataxia Clinic “share the hope of our patients with Friedreich’s ataxia that we will ultimately see approval of omaveloxolone for those who are suitable.”She added that neurologists there have been engaging with the NCPE and drugs manufacturer Biogen “to advocate for our patients and provide clinical context to inform ongoing negotiations around potential funding of this new treatment nationally”.