![\"Emma](\"https:\/\/www.newsbeep.com\/ie\/wp-content\/uploads\/2026\/07\/747969751_122272734800076727_6507518076201913210_n.jpg\")
<\/p>\nEmma suffers from Friedreich ataxia, and lost her brother to the same condition in 2016<\/p>\n
13:35, 17 Jul 2026Updated 13:46, 17 Jul 2026<\/p>\n
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Emma O\u2019Shea with her Mom and Dad, Ted and Catherine, her brother Kevin, and Senator Noel O’Donovan(Image: Senator Noel O’Donovan)<\/p>\n
A Cork woman is pleading that ‘people are running out of time’ after the decision to approve an EU-authorised drug for a rare, serious condition has been delayed.<\/p>\n
Emma O’Shea from Ballylickey near Bantry suffers from Friedreich ataxia (FA), which progressively damages the body and can impact speech, movement, coordination, swallowing, eyesight and heart function. It affects approximately one in 50,000 people, and Ireland has one of the highest rates of the condition in the EU.<\/p>\n
The Cork woman’s older brother Timmy passed away in 2016 at 29 years old due to heart failure related to FA. Emma and her family joined many campaigners outside Leinster house on Tuesday this week ahead of a HSE meeting on whether to make a drug used to treat the condition, Skyclarys, available in Ireland.<\/p>\n
The drug is used to slow the progression of FA, and has already been approved by a number of major health authorities around the world, including the US Food and Drug Administration (FDA) and the European Medicines Agency (EMA).<\/p>\n
The HSE Drugs Group did not recommend approving the use of public funding for the drug at their meeting in Leinster House. They instead referred the application to the Rare Diseases Technology Review Committee (RDTRC) for additional expert input. The HSE aims to complete this process within four weeks.<\/p>\n
In response to questions from Sinn F\u00e9in leader Mary Lou McDonald, T\u00e1naiste Simon Harris said that the HSE’s decision was not “passing a file from one committee to another.” He added the RDTRC would “bring together the experts… with patient representatives, with their voices as well, ensuring their lived experience, plus specialist expertise, informs the assessment.”<\/p>\n
He said the referral to this committee is “intended to ensure that every possible opportunity is given to a medicine to demonstrate its effectiveness.”<\/p>\n
Speaking to C103’s Cork Today Show, Emma said she and her family were “devastated” by the decision this week and added that it felt like “nobody was listening” to campaigners.<\/p>\n
She said: “I tried not to get my hopes up but I did, and we were let down again. It was heartbreaking. We thought we’d get the action we wanted, but we didn’t, but we were sent home with another delay, which we never expected.<\/p>\n
“It was devastating, can’t really put it into words how we felt, we thought we would get there, we really did. But no, we have to come back again in four weeks time and hope for the best and see how it goes. It’s just unfair how we have been treated, we fought so hard, we’re only at this stage now because we fought so hard.<\/p>\n
“It feels like no one’s really listening to us. We have explained that we don’t have time. That is the one thing that we don’t have. And again we have faced a delay, an unnecessary delay, we’re angry, we’re upset, we’re heartbroken.”<\/p>\n
Emma believes there is already enough proof that the drug works, so there is no need for further reviews. She added that she can feel her condition worsening even faster as she gets older – and once the damage is done, it can’t be healed.<\/p>\n
She added: “It has been approved by the FDA and the EMA, it is available in America and parts of Europe. There is no need for further reviews, they have all the information they need, there is nothing more than they do need. Just give us the drug and that’s all we want.<\/p>\n
“We’re losing more, the longer this goes on. We’ve explained the one thing we don’t have is time, and they’re just not listening. They don’t seem to understand we badly need this drug. We have proof that it works and it can slow the progression. It won’t stop it, we know that. And we will face what is coming. But with this drug, it will be a slower process and we’re okay with that. We know that, we understand that. We need a break, we really do.<\/p>\n
“It feels like we’re being brushed under the carpet. We’re going public with our very very private stories and we’re not being listened to.”<\/p>\n","protected":false},"excerpt":{"rendered":"Emma suffers from Friedreich ataxia, and lost her brother to the same condition in 2016 13:35, 17 Jul…\n","protected":false},"author":2,"featured_media":556514,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[33],"tags":[71494,103,2120,61,60,371],"class_list":["post-556513","post","type-post","status-publish","format-standard","has-post-thumbnail","category-medication","tag-county-cork","tag-health","tag-hse","tag-ie","tag-ireland","tag-medication"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/556513","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/comments?post=556513"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/556513\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media\/556514"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media?parent=556513"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/categories?post=556513"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/tags?post=556513"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}