{"id":593192,"date":"2026-08-14T16:24:12","date_gmt":"2026-08-14T16:24:12","guid":{"rendered":"https:\/\/www.newsbeep.com\/ie\/593192\/"},"modified":"2026-08-14T16:24:12","modified_gmt":"2026-08-14T16:24:12","slug":"cork-tds-demand-approval-for-life-changing-drug-skyclarys-after-hse-decision","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/ie\/593192\/","title":{"rendered":"Cork TDs demand approval for life-changing drug Skyclarys after HSE decision"},"content":{"rendered":"

‘This should not be viewed as a party political issue. It is a human issue’<\/p>\n

11:21, 14 Aug 2026Updated 11:23, 14 Aug 2026<\/p>\n

<\/p>\n

Padraig ‘Paudie’ Coady, 16, has Friedreich’s ataxia. His father is fighting to have a life-changing drug approved to treat the disease(Image: Craig Coady)<\/p>\n

Public representatives in Cork<\/a> have expressed outrage after the HSE declined to approve reimbursement for a life-changing drug for people suffering from Friedreich’s ataxia.<\/p>\n

Skyclarys has been approved in several other EU countries, and in recent weeks, the HSE has been examining whether the drug will be made available to patients through the public system. The high cost of the drug puts it far beyond the reach of most patients, coming in at an estimated \u20ac280,000 per year.<\/p>\n

The drug provides relief to patients suffering from Friedreich’s ataxia, which affects around 200 people in Ireland. The illness progressively damages the nervous system and severely shortens one’s life expectancy.<\/p>\n

Campaigners were left heartbroken by the decision handed down by the HSE Drugs Group. Craig Coady, whose younger son, Rory, lost his life to the illness last year, has been fighting hard to secure access to Skyclarys for his other son, Paudie, who also suffers from Friedreich’s ataxia.<\/p>\n

“I really was hoping, and I was positive it would be passed,” he said. “The fact that the Rare Disease Committee two weeks ago were very positive on this drug. (It) sent the information back to the Drug Committee, but unfortunately, they’re not going to reimburse it.”<\/p>\n

<\/p>\n

Craig, Della, Rory and Paudie Coady<\/p>\n

It’s been a particularly difficult time for the Coady family, as while Craig has taken on a full-time carer role for Paudie, his wife Della is in the advanced stages of Huntington\u2019s disease, which is taking away her ability to function independently. A GoFundMe has been set up for the Coady family<\/a>, with communities across Cork raising over \u20ac158,000 so far.<\/p>\n

The recommendation made by the HSE Drugs Group will now be put to the HSE’s senior management team, which is due to make the final decision on August 25. With just under ten days to go, politicians from both Government and opposition parties are calling for the drug to be approved for the sake of the families dealing with the condition.<\/p>\n

Labour councillor Peter Horgan, who chairs the HSE South West Forum, called for management to consider the situation with a ‘compassionate, patient-centred approach,’ urging the health authority to approve the drug.<\/p>\n

He said: \u201cFor families living with Friedreich\u2019s ataxia, this is not simply a question about a medicine or a reimbursement process. It is about their loved ones, their independence, their quality of life and their hopes for the future.<\/p>\n

\u201cI fully recognise that the HSE has to consider clinical evidence and the responsible use of public resources. But behind every assessment is a person, and behind every decision is a family who is living with a progressive and devastating condition. Families deserve to know that their circumstances are being considered with compassion as well as clinical and economic rigour.\u201d<\/p>\n

\u201cThis should not be viewed as a party political issue. It is a human issue. The families affected deserve a health service that listens to them and recognises the urgency and uncertainty they are facing. As Chair of the HSE South West Forum, I want to see the patient and family voice firmly at the heart of this discussion.\u201d<\/p>\n

Another Cork Labour representative, Eoghan Kenny TD, has also backed calls for the drug to be reimbursed.<\/p>\n

Cllr Horgan’s sentiment was echoed by Minister Christopher O’Sullivan, who said he was ‘gutted’ to hear of the HSE decision. The case surrounding the drug’s approval caused internal friction within Government parties, with representatives calling on senior figures to ensure the drug is approved despite the HSE Drug Group’s recommendation.<\/p>\n

In his statement, Minister O’Sullivan highlighted the case of Emma O\u2019Shea from West Cork, who suffers from Friedreich’s ataxia. The Cork woman’s older brother, Timmy, passed away in 2016 at 29 years old due to heart failure related to the condition. Emma and her family joined many campaigners outside Leinster House earlier this year in a rally calling for Government approval of Skyclarys.<\/p>\n

The West Cork TD said: “I\u2019m absolutely gutted for the families in Ireland who are impacted by Friedreich\u2019s ataxia. [The] news of the HSE Drugs Group’s decision not to recommend Skyclarys is a devastating blow.<\/p>\n

“However, my office is certainly not giving up on this issue. I will highlight it at every level possible that, despite the recommendations of the HSE Drugs Group, these incredibly brave individuals need to get timely access to the Skyclarys drug. The next meeting of the HSE management group will take place on the 25th of August. This will be key, and where the final decision will be made on this.<\/p>\n

“Although there\u2019s a separation of powers between the HSE management group and the political world, I will certainly be leaving no stone unturned when it comes to highlighting the urgent need for the likes of Emma O\u2019Shea from West Cork to get immediate access to this drug.”<\/p>\n","protected":false},"excerpt":{"rendered":"‘This should not be viewed as a party political issue. It is a human issue’ 11:21, 14 Aug…\n","protected":false},"author":2,"featured_media":593193,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[33],"tags":[103,2120,61,60,371],"class_list":["post-593192","post","type-post","status-publish","format-standard","has-post-thumbnail","category-medication","tag-health","tag-hse","tag-ie","tag-ireland","tag-medication"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/593192","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=593192"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/593192\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media\/593193"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media?parent=593192"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/categories?post=593192"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/tags?post=593192"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}