Sisters Olivia Dews and Charlotte Casey, from Worcestershire, are lobbying Parliament this week to advocate for the treatment of their condition, Freidreich's Ataxia (FA), to be made available on the NHS. The sisters, aged 28 and 25 respectively, were diagnosed with the progressive neurodegenerative disease in 2024 and now use wheelchairs.
Alongside other sufferers, the women from Bromsgrove are taking a petition to Downing Street. They are asking the National Institute for Health and Care Excellence (NICE) to re-evaluate the treatment, omaveloxolone, under its highly specialised technology committee for extremely rare conditions. Charlotte Casey stated that 100,000 signatures are needed for the petition to be discussed in Parliament.
Omaveloxolone, with the brand name Skyclarys, has shown a 54% chance of slowing the progression of FA, which is thought to affect 1,100 people in the UK. However, the medication costs almost £300,000 per patient per year, significantly exceeding current NICE guidelines that cap treatment spend in England at £30,000 per patient per year. The Department for Health and Social Care confirmed that the drug's manufacturer, Biogen, had withdrawn from the evaluation process, but it could be reconsidered if the firm re-engages.
Biogen wrote to Ataxia UK last week, reaffirming its commitment to working with NHS bodies to try and secure broader access to the drug. Kylie Bromley, Biogen's UK managing director, informed the charity that the company is exploring a possible pilot scheme with the NHS.