Our Omav Campaign
New Year update;
December 2025: On December 10, an Ataxia UK delegation led by its Chief Executive, Sue Millman, along with Jonathan Brash MP met with Dr Zubair Ahmed MP, Parliamentary Under Secretary of State for Health Innovation and Safety, and other officials from the Department of Health and Social Care (DHSC) in London. Read more here
Earlier this year, over 10,000 of you signed our open letter urging the UK government to provide early access to omaveloxolone (Omav) the first and only approved treatment for Friedreich’s ataxia (FA). This was a remarkable level of support and, together, we were able to inform policymakers that the treatment for people with FA cannot wait and they must act now. Â
However, on 8 July the Department of Health and Social Care (DHSC) responded saying that the NHS would not fund interim access to Omav since the manufacturer withdrew from the NICE approval process. Â
We are not happy with this response, and we will be sending a strong letter highlighting the urgent need for access to omaveloxolone.
Here is our timeline of action:
June 2025: Open letter to the Health Secretary signed by over 10,000 supporters.
June 2025: Submission to the Scottish Medicines Consortium (SMC) means a new pathway for clinicians in Scotland to seek early access for patients is available- .
June 2025:Â Ataxia UK CEO Sue Millman and Professor Paola Giunti presented the case at the All-Party Parliamentary Group on Rare Disease.
July 2025:Â DHSC issued their response, confirming no interim access in England.
September 2025: We are submitting a second formal letter to DHSC, pressing for a compassionate access programme and seeking an urgent meeting.
September 2025: We are also issuing a press release to national media to highlight the injustice and keep the issue in the public eye.
December 2025: On December 10, an Ataxia UK delegation led by its Chief Executive, Sue Millman, along with Jonathan Brash MP met with Dr Zubair Ahmed MP, Parliamentary Under Secretary of State for Health Innovation and Safety, and other officials from the Department of Health and Social Care (DHSC) in London. Read more here
What's next and how you can help
We are far from done. With your continued support, we will continue to exert pressure on decision-makers, utilise the media, and work alongside clinicians to achieve an equitable, timely, and humane resolution.
We will publish our second letter and begin another phase of social media and press campaigning next week, and we wanted you to be the first to. Here are some ways you can help:
Share our socials! Please look out for relevant posts and share across your networks using hashtag #omavaccess
Once we send our second letter to DHSC, we will publish it on our website so that you can forward it to your constituency MP, member of devolved parliament, or regional mayor. Tell us your own story. You can contact our team at communications@ataxia.org.uk to tell us how you are impacted or find your local MP via this linkÂ
We will email you links to a downloadable version of our second Omav letter, how you can forward it to your MP and the press release so STAY TUNED and Keep an eye on your inbox.
Thank you for being part of this vital campaign.
