A Co Fermanagh woman facing a rare debilitating illness has urged people in Northern Ireland to support a move to get access to a “life-changing” drug debated at Westminster.
Michelle Beagan said “keep signing, keep shouting” about the fact that a drug that can treat Friedreich’s ataxia is not available on the NHS due to costs.
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.
The drug omaveloxolone, which halts the progression of the illness, was recently approved for funding in the Republic by the Health Service Executive (HSE).
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.
She is among around 200 people on the island of Ireland thought to live with Friedreich’s ataxia.
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.
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.
On Friday the number had reached more than 101,000 signatures.
The UK Department of Health has said the US manufacturer of the drug, Biogen, “withdrew its evidence submission” to supply it 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 to the NHS for the treatment are too high.
A government response to the petition reaching 10,000 signatures stated it understands the company “has not approached NHS England or NICE to suggest a resubmission”, adding: “Before taking any further action, Biogen must confirm to NHS England that it is willing to reengage in the NICE appraisal process and commercial discussions.”
Stormont’s 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.
A petition is closing in on 100,000 signatures, which may see a debate on Friedreich’s ataxia drug access at Westminster (Nick Ansell/PA)
It said the drug is not accepted as treatment for the illness in NI “in accordance with advice issued by the Scottish Medicines Consortium in March 2026.”
As the e-petition closed in on 100,000, Ms Beagan spoke of her “reality” in a video posted online.
“A little question – what would you do if you or someone you love was told their time on Earth was limited?” she said.
“In 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.”
Addressing the UK Prime Minister, the north’s First Minister and health minister, she said: “Andy Burnham, Michelle O’Neill and Robbie Butler, as political leaders…I’m pretty sure I know what you would do – you would fight with every inch of your being.
“For me and others living with Friedreich’s ataxia, the above is not a what-if, for us it’s our reality.”
Ms Beagan – who has said “every day counts” with her illness – said the drug “is not a cure…it gives us hope that progression can be halted”.
She added of the petition: “We need your help to get access to this drug. Keep signing, keep shouting, keep sharing.”
The petition is available at https://petition.parliament.uk/petitions/760461.