A teacher near the border leads a 100,000‑signature petition to bring a life‑changing Friedreich’s ataxia drug to the NHS.
Michelle Beagan, a 42-year-old teacher from the village of Roslea in County Fermanagh, has turned her personal battle with Friedreich’s ataxia into a public campaign. Diagnosed at the age of 31, she joins an estimated 200 people on the island of Ireland living with this rare neuro-degenerative disease.
The condition relentlessly damages the nervous system, stripping sufferers of mobility, speech and, in many cases, leading to heart complications and early death.
Friedreich’s ataxia and the promise of omaveloxolone
The only medicine currently shown to halt disease progression is omaveloxolone marketed as Skyclarys.
Clinical data indicate it can slow the decline of motor function by roughly half, offering patients a chance to retain independence for longer. In the Republic of Ireland, the Health Service Executive (HSE) approved funding for the drug, allowing eligible patients to receive it at no charge.
By contrast, the United Kingdom’s NICE (National Institute for Health and Care Excellence) has not issued a recommendation, leaving the drug unavailable on the NHS. The UK Department of Health has explained that the American manufacturer Biogen withdrew its evidence submission after NICE terminated the appraisal, citing concerns over the drug’s cost-effectiveness.
Michelle Beagan’s cross-border campaign
Living merely minutes from the Irish border, Beagan felt the disparity acutely. She launched an e-petition demanding NHS funding for omaveloxolone, urging people to “keep signing, keep shouting”. The petition quickly gathered momentum, surpassing the 100,000-signature threshold required for parliamentary debate. By Friday it had recorded more than 101,000 signatures, a figure that pressured Westminster to schedule a discussion. In a video posted online, Beagan asked viewers, “What would you do if someone you love was told their time on Earth was limited?” She described the daily reality of losing mobility, developing diabetes, heart problems, and the loss of hearing, vision and speech.
Addressing political leaders—including Prime Minister Andy Burnham, Northern Ireland First Minister Michelle O’Neill and Health Minister Robbie Butler—Beagan said, “For me and others living with Friedreich’s ataxia, the above is not a what-if, it’s our reality.” She also reminded the audience that “every day counts”. While she acknowledges the drug “is not a cure… it gives us hope that progression can be halted”, she stresses that timely access could dramatically improve quality of life for the small patient community.
Why NICE and the UK government remain on hold
The UK response cited the lack of a new evidence package from Biogen. A Department of Health statement noted that Biogen has “not approached NHS England or NICE to suggest a resubmission”, and that before any further action, the company must confirm its willingness to re-engage in the appraisal and commercial negotiations. NICE’s process requires a manufacturer’s submission; without it, the agency cannot issue a recommendation, and NHS England is legally barred from funding drugs not endorsed by NICE.
Complicating matters, the Scottish Medicines Consortium issued guidance in March 2026 stating the drug does not meet its criteria for adoption in Northern Ireland. The UK government has indicated that, in the absence of a NICE determination, it may consider decisions made by other UK health technology appraisal bodies, but no concrete step has been announced. Meanwhile, the broader policy context includes a series of pilots aimed at streamlining rare-disease drug valuation, as outlined by the Department of Health and Social Care, yet these initiatives have not yet altered the omaveloxolone impasse.
For the roughly 200 Irish patients living with Friedreich’s ataxia, the situation is stark. Without NHS coverage, they would need to travel to the Republic to obtain the drug, a logistical and financial burden that many cannot bear. The petition’s success in reaching the parliamentary threshold has forced the issue onto the Westminster agenda, but real progress hinges on Biogen’s decision to re-enter the NICE appraisal and on the UK authorities’ willingness to fund a therapy deemed too costly under current evaluation frameworks.
As the debate approaches, Beagan’s message remains clear: “We need your help to get access to this drug. Keep signing, keep shouting, keep sharing.” The petition can be accessed at petition.parliament.uk/petitions/760461. Whether the UK will ultimately align its funding with the Republic’s decision remains uncertain, but the growing public pressure underscores the human cost of delayed access to a treatment that, while not a cure, offers a vital chance to halt disease progression.
