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!
There is a petition which you can sign, which needs to get to 100,000 signatures and you can also contact your MP. My member of Parliament is Richard Holden, and he talks a lot but I prefer Andy Burnham who could make a difference, but he is not my MP.
You can contact your MP through the link above and email with a short email and he always responds eventually.
With something like this:
Dear Mr Holden,
I have recently signed a petition to get the NHS to fund a drug which is funded and available in the EU, but not by the NHS. Perhaps you could table a question in the Commons as to why this Government talks a lot about social care but ignores those in this country who need a helping hand.
Fund NHS access to Omaveloxolone for patients with Friedreich’s Ataxia is the heading to this petition.
I have also added a link to my website at https://billericayboy.co.uk/nhs-access-to-omaveloxolone-and-how-to-contact-your-mp/
I am supporting a colleague who helps out at the local foodbank , and who has asked people to support this petition, I am sharing it with a number of others in the community, mainly in Billericay.
I hope you can help,
Many thanks in advance.
Kevan