{"id":489888,"date":"2026-06-09T01:49:14","date_gmt":"2026-06-09T01:49:14","guid":{"rendered":"https:\/\/www.newsbeep.com\/ie\/489888\/"},"modified":"2026-06-09T01:49:14","modified_gmt":"2026-06-09T01:49:14","slug":"taoiseach-tells-cork-dad-who-lost-one-son-that-discussions-on-life-changing-drug-for-his-other-son-will-be-brought-forward","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/ie\/489888\/","title":{"rendered":"Taoiseach tells Cork dad who lost one son that discussions on life-changing drug for his other son will be brought forward"},"content":{"rendered":"

As reported by the Irish Examiner last week, Craig Coady is imploring the HSE to approve the drug Skyclarys to treat his son Paudie\u2019s (16) Friedreich\u2019s ataxia<\/a> diagnosis.<\/p>\n

Paudie\u2019s younger brother Rory, 13, passed away last September from the rare genetic disorder which causes progressive damage to the nervous system and can lead to heart complications.<\/p>\n

Mr Coady met the Taoiseach in Cork on Monday and spoke to him for 50 minutes.<\/p>\n

Miche\u00e1l Martin was described as \u201cemotional\u201d during the \u201cpositive\u201d meeting.<\/p>\n

The HSE Drugs Group must deliberate on whether Skyclarys can be approved for use in Ireland. While it is not on the agenda for this month\u2019s meeting, which will be held this week, it is on the agenda for July\u2019s meeting.<\/p>\n

\u201cThey’re hoping they can bring [the meeting] forward to the end of June,\u201d Mr Coady said.<\/p>\n

\u201cIt is [a boost], because we were led to believe it would be September [until the drug would be discussed by the Drugs Group].\u201d\u00a0<\/p>\n

Mr Coady said that while the Taoiseach \u201cmade no promises\u201d, he is \u201cpushing\u201d with health minister Jennifer Carroll MacNeill and the HSE to bring it forward. Mr Coady added:\u00a0<\/p>\n

\n He told me, ‘I’m gonna do everything I can to get the Skyclarys drug to your son and to 200 other patients’.\n <\/p>\n

P\u00e1draig O\u2019Sullivan, Fianna F\u00e1il TD for Cork North Central, told the Irish Examiner the Taoiseach empathised with Mr Coady and those who are seeking Skyclarys, and that \u201cevery effort will be made to expedite the process, while acknowledging the ongoing difficulties with the reimbursement system in Ireland\u201d.<\/p>\n

\"CraigCraig Coady and his sons Paudie and Rory in happier times. Rory has already succumbed to Friedreich\u2019s ataxia and Paudie’s condition has is now deteriorating. Pictures courtesy of the Coady family<\/p>\n

]The National Centre for Pharmacoeconomics (NCPE) said in December that it would not recommend that the HSE provide Skyclarys because it was \u201cpoor value for money\u201d, and it was \u201cunsure based on the available clinical evidence\u201d on the \u201cmeaningful improvements\u201d it could have.<\/p>\n

However, the decision on whether to provide the drug for reimbursement is ultimately made by the HSE Drugs Group.<\/p>\n

Mr Coady told the Irish Examiner the drug could help improve Paudie\u2019s quality of life.<\/p>\n

Paudie was diagnosed with Friedreich\u2019s ataxia in 2023 after his dad noticed that he was a \u201cbit off balance\u201d while playing a match.<\/p>\n

The doctors recommended testing Rory for the condition, despite him not displaying any symptoms.<\/p>\n

A year after Paudie\u2019s diagnosis, the Coady family was told that Rory also had Friedreich\u2019s ataxia, and that the lower left muscle in his heart had thickened. He passed away in September 2025.<\/p>\n

Mr Coady is seeking Skyclarys for Paudie as his condition is deteriorating and he is becoming increasingly fatigued.<\/p>\n

Louise Burne, Political Correspondent<\/p>\n","protected":false},"excerpt":{"rendered":"As reported by the Irish Examiner last week, Craig Coady is imploring the HSE to approve the drug…\n","protected":false},"author":2,"featured_media":489889,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[2],"tags":[11246,79,4892,2120,61,60,1843,43],"class_list":["post-489888","post","type-post","status-publish","format-standard","has-post-thumbnail","category-ireland","tag-childrens-health","tag-cork-news","tag-health-news","tag-hse","tag-ie","tag-ireland","tag-micheal-martin","tag-news"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/489888","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=489888"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/489888\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media\/489889"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media?parent=489888"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/categories?post=489888"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/tags?post=489888"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}