{"id":754455,"date":"2026-08-30T10:14:11","date_gmt":"2026-08-30T10:14:11","guid":{"rendered":"https:\/\/www.newsbeep.com\/uk\/754455\/"},"modified":"2026-08-30T10:14:11","modified_gmt":"2026-08-30T10:14:11","slug":"life-changing-drug-for-rare-illness-approved-in-the-republic-but-fermanagh-woman-living-minutes-from-border-unable-to-get-it-on-nhs","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/uk\/754455\/","title":{"rendered":"\u2018Life-changing\u2019 drug for rare illness approved in the Republic, but Fermanagh woman living minutes from border unable to get it on NHS"},"content":{"rendered":"

A Co Fermanagh<\/a> woman with a debilitating illness living 10 minutes from the border has spoken of her frustration with Northern Ireland\u2019s health service after a drug to treat her rare condition was approved for funding in the Republic.<\/p>\n

Michelle Beagan has been campaigning for a \u201clife-changing\u201d drug that can treat Friedreich\u2019s ataxia to be made available in the UK, after she was diagnosed at the age of 31.<\/p>\n

Now 42, the teacher from Roslea<\/a> requires the use of a wheelchair and walking aids for mobility, and says her condition will only deteriorate further without access to the drug omaveloxolone, which is not available on the NHS \u2013 despite being approved for use \u2013 due to costs.<\/p>\n

However, just minutes from where she lives, the drug will now be available over the border as the Republic\u2019s Health Service Executive (HSE) has approved funding for Friedreich\u2019s ataxia patients.<\/p>\n

\"‘Fewer<\/a>\"‘Irish<\/a><\/p>\n

The HSE approved reimbursement for patients on Tuesday, reversing an earlier decision by its Drugs Group.<\/p>\n

But in the north and Britain, a barrier remains for access for the thousands who live with the disease, which affects the nervous system.<\/p>\n

Sold under the name Skyclarys, the drug is manufactured by US firm Biogen, and dramatically slows the progression of the illness.<\/p>\n

The company \u201cwithdrew its evidence submission\u201d to supply the drug 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 of the treatment are too expensive for the NHS.<\/p>\n

Accessing the drug privately could cost patients hundreds of thousands of pounds.<\/p>\n

Ms Beagan welcomed news that her fellow Friedreich\u2019s ataxia sufferers in the Republic can benefit from the treatment, but warned that \u201cevery day counts\u201d for those without access in the north.<\/p>\n

It is estimated that around 200 people across the island of Ireland are living with the illness.<\/p>\n

\u201cThere are now around 12 countries where this life-changing drug is available following the HSE\u2019s announcement,\u201d she told the Irish News.<\/p>\n

\u201cIt\u2019s not a cure, but it slows a lot of the symptoms down. The sooner you get it on your journey with this disease, the better it is.<\/p>\n

\u201cI\u2019m really happy that there has been this important shift in the Republic, but it\u2019s frustrating for me as well.<\/p>\n

\u201cBeing from Roslea, if I lived 10 minutes from where I am now, on the other side of the border, I would be able to access this treatment, but as it stands now, I can\u2019t.<\/p>\n

\u201cI would like to think this could be the kick-start we need to see progress on this side, but I don\u2019t have too much confidence.\u201d<\/p>\n

Read more: Tragic death of Co Armagh boy who faced \u2018one of the most cruel\u2019 diseases highlights need for testing<\/a><\/p>\n

She called for health authorities to \u201cget their act together\u201d, as \u201cfor people like me, every day that we don\u2019t have access to the drug is a day in which our condition can irreversibly deteriorate\u201d.<\/p>\n

Ms Beagan began noticing symptoms when she was 21, but it took a decade before she was successfully diagnosed, as doctors were initially unable to identify what was wrong.<\/p>\n

\u201cMine was considered a late onset, so I at least got to live a normal life until then,\u201d she said.<\/p>\n

\"MichelleMichelle Beagan, from Roslea in Co Fermanagh <\/p>\n

\u201cI currently have to use a wheelchair at times, and walking aids, and my voice can be slurred. The condition can also lead to issues with your eyes, your heart and more.<\/p>\n

\u201cThe drug would slow that progression down, and if I got it now, I could potentially live the rest of my life the way I am now. I\u2019ve been told I\u2019m actually an ideal patient.<\/p>\n

\u201cSo every day counts \u2013 every day I don\u2019t have access, it could lead to irreversible deterioration. I just hope a solution can be found with the NHS to allow access as soon as possible.\u201d<\/p>\n

A Department of Health spokesperson said it has a formal link with NICE under which \u201cappraisals are reviewed locally for their legal and policy applicability in Northern Ireland\u201d.<\/p>\n

They said the NICE appraisal \u201cwas terminated in May 2025 after the manufacturer, Biogen, withdrew its evidence submission\u201d.<\/p>\n

\u201cNICE will review this decision if Biogen decides to make a new submission,\u201d the spokesperson said.<\/p>\n

\u201cIn the absence of a published NICE determination the Department of Health may seek and potentially apply decisions made by other UK Health Technology Appraisal (HTA) bodies as part of the HSC Managed Entry process. <\/p>\n

\u201cIn Northern Ireland, omaveloxolone (Skyclarys) is not accepted for use for the treatment of Friedreich\u2019s ataxia in adults and adolescents aged 16 years and older in accordance with advice issued by the Scottish Medicines Consortium in March 2026.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"A Co Fermanagh woman with a debilitating illness living 10 minutes from the border has spoken of her…\n","protected":false},"author":2,"featured_media":754456,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[42],"tags":[102,6591,56,54,55],"class_list":["post-754455","post","type-post","status-publish","format-standard","has-post-thumbnail","category-medication","tag-health","tag-medication","tag-uk","tag-united-kingdom","tag-unitedkingdom"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts\/754455","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=754455"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts\/754455\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/media\/754456"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/media?parent=754455"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/categories?post=754455"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/tags?post=754455"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}