David Burton-Sampson, Labour MP for Southend West and Leigh, has vowed to help 17-year-old Brogan Johnson access omaveloxolone, a drug that could slow her Friedrich's ataxia. The condition affects her heart, nervous system, and mobility, and is described as life-limiting.
Omaveloxolone, also known as Skyclarys, was approved for private use in the UK in April 2025. However, the medication costs around £1,000 a day, making it unaffordable for Brogan.
Discussions between the pharmaceutical company Biogen and the National Institute for Health and Social Care (NICE) to make the drug available on the NHS have stalled. NICE stated it could not recommend the drug for NHS use as Biogen had withdrawn from discussions. Biogen, however, claimed it withdrew after NICE indicated that approval was unlikely.
Mr Burton-Sampson stated that progress is being made to get Biogen in front of officials at the Department of Health and Social Care, including the minister. He emphasised the importance of accelerating these discussions to allow individuals like Brogan to "live a better life."
Brogan and her family recently delivered a letter to 10 Downing Street, following a petition with 100,000 signatures. Friedrich's ataxia is a progressive neurodegenerative disease affecting about 1,100 people in the UK, with an average life expectancy of 35-50 years.