Fermanagh Woman Faces Drug Access Barrier Despite Approval in Republic

London, United Kingdom Aug 30, 2026 ALN: A Co Fermanagh woman with a debilitating illness living 10 minutes from the border has spoken of her frustration with Northern Ireland’s health service after a drug to treat her rare condition was approved for funding in the Republic.

Michelle Beagan has been campaigning for a “life-changing” drug that can treat Friedreich’s ataxia to be made available in the UK, after she was diagnosed at the age of 31.

Now 42, the teacher from Roslea 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 – despite being approved for use – due to costs.

However, just minutes from where she lives, the drug will now be available over the border as the Republic’s Health Service Executive (HSE) has approved funding for Friedreich’s ataxia patients.

The HSE approved reimbursement for patients on Tuesday, reversing an earlier decision by its Drugs Group.

But in the north and Britain, a barrier remains for access for the thousands who live with the disease, which affects the nervous system.

Sold under the name Skyclarys, the drug is manufactured by US firm Biogen, and dramatically slows the progression of the illness.

The company “withdrew its evidence submission” to supply the drug to the NHS after an appraisal was terminated by the UK’s National Institute for Health and Care Excellence (NICE).

It has been reported the costs of the treatment are too expensive for the NHS.

Accessing the drug privately could cost patients hundreds of thousands of pounds.

Ms Beagan welcomed news that her fellow Friedreich’s ataxia sufferers in the Republic can benefit from the treatment, but warned that “every day counts” for those without access in the north.

It is estimated that around 200 people across the island of Ireland are living with the illness.

“There are now around 12 countries where this life-changing drug is available following the HSE’s announcement,” she told the Irish News.

“It’s 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.

“I’m really happy that there has been this important shift in the Republic, but it’s frustrating for me as well.

“Being 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’t.

“I would like to think this could be the kick-start we need to see progress on this side, but I don’t have too much confidence.”

She called for health authorities to “get their act together”, as “for people like me, every day that we don’t have access to the drug is a day in which our condition can irreversibly deteriorate”.

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.

“Mine was considered a late onset, so I at least got to live a normal life until then,” she said.

“I 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.

“The 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’ve been told I’m actually an ideal patient.

“So every day counts – every day I don’t 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.”

A Department of Health spokesperson said it has a formal link with NICE under which “appraisals are reviewed locally for their legal and policy applicability in Northern Ireland”.

They said the NICE appraisal “was terminated in May 2025 after the manufacturer, Biogen, withdrew its evidence submission”.

“NICE will review this decision if Biogen decides to make a new submission,” the spokesperson said.

“In 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.

“In Northern Ireland, omaveloxolone (Skyclarys) is not accepted for use for the treatment of Friedreich’s ataxia in adults and adolescents aged 16 years and older in accordance with advice issued by the Scottish Medicines Consortium in March 2026.”