{"id":775368,"date":"2026-09-19T03:20:15","date_gmt":"2026-09-19T03:20:15","guid":{"rendered":"https:\/\/www.newsbeep.com\/uk\/775368\/"},"modified":"2026-09-19T03:20:15","modified_gmt":"2026-09-19T03:20:15","slug":"petition-calling-for-westminster-debate-on-access-to-life-changing-drug-available-in-republic-tops-100000-signatures-the-irish-news","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/uk\/775368\/","title":{"rendered":"Petition calling for Westminster debate on access to \u2018life-changing\u2019 drug available in Republic tops 100,000 signatures \u2013 The Irish News"},"content":{"rendered":"

A Co Fermanagh<\/a> woman facing a rare debilitating illness has urged people in Northern Ireland to support a move to get access to a \u201clife-changing\u201d drug debated at Westminster.<\/p>\n

Michelle Beagan said \u201ckeep signing, keep shouting\u201d about the fact that a drug that can treat Friedreich\u2019s ataxia is not available on the NHS due to costs.<\/p>\n

The illness causes severe deterioration of the nervous system, leading to sufferers losing the ability to walk and even speak, while increasing the risk of heart conditions and premature death.<\/p>\n

The drug omaveloxolone, which halts the progression of the illness, was recently approved for funding in the Republic<\/a> by the Health Service Executive (HSE).<\/p>\n

\"Tyrone<\/a>\"Newry<\/a><\/p>\n

What makes the situation worse for Ms Beagan, who was diagnosed at the age of 31, is that she lives just minutes from the border in Co Fermanagh.<\/p>\n

She is among around 200 people on the island of Ireland thought to live with Friedreich\u2019s ataxia.<\/p>\n

From the village of Roslea, the 42-year-old teacher said news of the HSE decision last month was bittersweet, as there are no plans for the drug to be made available to NHS patients in the UK.<\/p>\n

However, a Parliament petition on funding access to the drug has been gathering signatures, and will be considered for debate at Westminster after reaching 100,000.<\/p>\n

On Friday the number had reached more than 101,000 signatures.<\/p>\n

The UK Department of Health has said the US manufacturer of the drug, Biogen, \u201cwithdrew its evidence submission\u201d to supply it to the NHS after an appraisal was terminated by the UK\u2019s National Institute for Health and Care Excellence (NICE).<\/p>\n

It has been reported the costs to the NHS for the treatment are too high.<\/p>\n

A government response to the petition reaching 10,000 signatures stated it understands the company \u201chas not approached NHS England or NICE to suggest a resubmission\u201d, adding: \u201cBefore taking any further action, Biogen must confirm to NHS England that it is willing to reengage in the NICE appraisal process and commercial discussions.\u201d<\/p>\n

Stormont\u2019s Department of Health previously said that in the absence of a NICE determination, it may apply decisions made by other UK Health Technology Appraisal bodies.<\/p>\n

\"DebateA petition is closing in on 100,000 signatures, which may see a debate on Friedreich\u2019s ataxia drug access at Westminster (Nick Ansell\/PA) <\/p>\n

It said the drug is not accepted as treatment for the illness in NI \u201cin accordance with advice issued by the Scottish Medicines Consortium in March 2026.\u201d<\/p>\n

As the e-petition closed in on 100,000, Ms Beagan spoke of her \u201creality\u201d in a video posted online.<\/p>\n

\u201cA little question \u2013 what would you do if you or someone you love was told their time on Earth was limited?\u201d she said.<\/p>\n

\u201cIn the meantime their mobility would slowly be robbed from them, they might develop diabetes, heart problems, lose their hearing, vision, ability to east, swallow speak and loads more.\u201d<\/p>\n

Addressing the UK Prime Minister, the north\u2019s First Minister and health minister, she said: \u201cAndy Burnham, Michelle O\u2019Neill and Robbie Butler, as political leaders…I\u2019m pretty sure I know what you would do \u2013 you would fight with every inch of your being.<\/p>\n

\u201cFor me and others living with Friedreich\u2019s ataxia, the above is not a what-if, for us it\u2019s our reality.\u201d<\/p>\n

Ms Beagan – who has said \u201cevery day counts\u201d with her illness \u2013 said the drug \u201cis not a cure…it gives us hope that progression can be halted\u201d.<\/p>\n

She added of the petition: \u201cWe need your help to get access to this drug. Keep signing, keep shouting, keep sharing.\u201d<\/p>\n

The petition is available at https:\/\/petition.parliament.uk\/petitions\/760461.<\/p>\n","protected":false},"excerpt":{"rendered":"A Co Fermanagh woman facing a rare debilitating illness has urged people in Northern Ireland to support a…\n","protected":false},"author":2,"featured_media":775369,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[42],"tags":[3016,102,2960,6591,56,54,55,2915],"class_list":["post-775368","post","type-post","status-publish","format-standard","has-post-thumbnail","category-medication","tag-co-fermanagh","tag-health","tag-healthcare","tag-medication","tag-uk","tag-united-kingdom","tag-unitedkingdom","tag-westminster"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts\/775368","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/comments?post=775368"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts\/775368\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/media\/775369"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/media?parent=775368"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/categories?post=775368"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/tags?post=775368"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}