Fund NHS access to Omaveloxolone for patients with Friedreich's Ataxia
103,608 people signed this petition to the UK Parliament after it opened on 24 March 2026; it closed on 24 September 2026. The Government responded on 4 September 2026.
The petition
The petition's creator is not named in the Petitions site's published record. Quoted in full from the UK Parliament petitions site.
Fund NHS access to Omaveloxolone for patients with Friedreich's Ataxia
We call on the Government to fund NHS access to Omaveloxolone in the UK. We believe the drug should also be considered under the HST programme, which we feel is the only appraisal route which reflects the realities of Friedreich's Ataxia. This is a degenerative disease & time is of the essence.
Friedreich's Ataxia patients need access to the drug Omaveloxolone, the only drug available for this disease. Without treatment, this degenerative disease can get worse. Patients & families may have to see their loved ones deteriorate when they are aware there is a drug available to stop the progression of this disease & in many cases, to improve the symptoms. The drug is available in EU countries & America. It passed the safety test in April 2025 and we believe it should be available on the NHS!
The Government's response
The Government published its response on 4 September 2026; the petitions site lists the Department of Health and Social Care as responsible. Its summary:
The Government remains committed to improving access to effective and innovative medicines for patients. NICE cannot evaluate omaveloxolone unless the company re-engages with its appraisal.
The opening 306 words of the 607-word response:
The Government recognises the concern and urgency felt by people affected by Friedreich’s ataxia and their families, particularly given the progressive nature of the condition.
The National Institute for Health and Care Excellence (NICE) is the independent body responsible for developing evidence-based recommendations for the NHS on whether new, licensed medicines represent a clinically and cost-effective use of NHS resources. The NHS in England is legally required to fund medicines recommended by NICE.
NICE initiated the appraisal of omaveloxolone for the treatment of Friedreich’s ataxia for people aged 16 and over in anticipation of a licence being granted by the Medicines and Healthcare products Regulatory Agency (MHRA). The MHRA is the independent body responsible for licensing medicines for use in the UK, based on an assessment of their safety, quality and efficacy.
NICE’s appraisal process requires the manufacturer of the drug to make an evidence submission. NICE has unfortunately been unable to develop guidance for the NHS on the use of omaveloxolone for treating Friedreich's ataxia in people 16 years and over because the company, Biogen, withdrew its evidence submission. NICE will reopen the appraisal if the company decides to make a new evidence submission.
The Government understands that Biogen has not approached NHS England or NICE to suggest a resubmission or seek a commercial surgery. 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.
While the Government understands the desire for urgent access, to avoid the possibility of creating a way to circumvent the appraisal process, NHS England does not fund medicines in circumstances where companies have not engaged with NICE. Funding a medicine before a positive recommendation by NICE also risks creating temporary access to a treatment that could be withdrawn at a later date, if not recommended.
Read the full response on the petitions site.
Where the signatures came from
Signatures came from 650 constituencies. Measured against each constituency's electorate at the 2024 general election, the most came from Southend West and Leigh, with 44.5 signatures per 1,000 electors (3,342 in all).
102,784 of the signatures were from the UK and 824 from elsewhere, by the location signers gave.
| Constituency | Signatures | Electorate, July 2024 | Per 1,000 electors |
|---|---|---|---|
| Southend West and Leigh | 3,342 | 75,154 | 44.5 |
| Bromsgrove | 3,038 | 76,468 | 39.7 |
| Southend East and Rochford | 2,590 | 70,217 | 36.9 |
| Liverpool Garston | 1,683 | 69,282 | 24.3 |
| Rayleigh and Wickford | 1,672 | 76,576 | 21.8 |
| Redditch | 1,524 | 71,042 | 21.5 |
| Castle Point | 1,159 | 71,026 | 16.3 |
| Hartlepool | 1,012 | 71,437 | 14.2 |
| Bury South | 1,033 | 75,326 | 13.7 |
| Tonbridge | 997 | 72,799 | 13.7 |
| Region | Signatures |
|---|---|
| North West | 16,328 |
| East of England | 16,167 |
| West Midlands | 14,720 |
| South East | 12,504 |
| London | 11,155 |
| South West | 5,653 |
| Scotland | 5,414 |
| Yorkshire and The Humber | 4,836 |
| East Midlands | 4,582 |
| Northern Ireland | 3,834 |
| Wales | 3,718 |
| North East | 3,373 |
Source and receipt
- https://petition.parliament.uk/petitions/760461.jsonUK Parliament Petitions API · read 2026-10-15 · SHA-256
d8b9d656646b6db3… - The petition on petition.parliament.uk
The petition's words are its creator's and the response is the Government's; this site quotes both and gives no view on either. Signature counts can still change while a petition is open. To report an error, send a correction request.