A 17-year-old from Leigh-on-Sea, Essex, has written an open letter to Prime Minister Andy Burnham urging him to make a life-extending drug available on the NHS for people with Friedreich's Ataxia (FA).
Brogan Johnson was diagnosed with the rare, progressive neurodegenerative disorder in March 2025 after years of struggling with her balance and coordination. The condition damages the nervous system, heart and pancreas, and can cause problems with mobility, speech, swallowing and heart function. According to John Hopkins Medicine, sufferers often need a wheelchair within 10 to 20 years of the onset of symptoms and can die of heart failure.
Brogan is campaigning for access to omaveloxolone, sold under the brand name Skyclarys, which can slow the progression of the disease. The drug costs around £1,000 a day to fund privately in the UK and is not currently available on the NHS.
Letter delivered to No 10
The treatment was approved by the UK's medicines regulator in April 2025, but negotiations between the National Institute for Health and Care Excellence (NICE) and pharmaceutical company Biogen over NHS access have broken down.
Brogan and her mum, Karly, 44, travelled to London this week to deliver an open letter to Mr Burnham at No 10 Downing Street, calling for urgent action to make the drug available to patients across the UK. Their campaign follows a petition calling for access to the treatment that attracted 100,000 signatures, including support from former heavyweight boxer Frank Bruno.
In her letter, Brogan wrote: "I'm scared of losing the things that make me who I am and the future I've always imagined for myself."
Diagnosis and early symptoms
Brogan first began experiencing symptoms at around 10 years old, when her family noticed she was becoming increasingly clumsy. Her mother said they initially sought private tests, and Brogan was wrongly diagnosed with dyspraxia around 2021. As her symptoms continued, the family pushed for further investigations, eventually receiving the diagnosis of Friedreich's Ataxia.
Karly told the Mirror: "I knew nothing about it. I was heartbroken and felt so isolated. It's one in 50,000, rare and life-limiting."
Brogan also faced bullying at school because of her mobility problems, something she described in her letter as being targeted for "something I can't control". She wrote: "My balance and coordination are affected, which makes walking difficult and means that I can be very unsteady and insecure on my feet. I always have to hold onto someone or use an aid. Things that other people can do without thinking can take much more effort for me."
Struggle for support
Brogan had dreamed of becoming a vet but has been forced to reconsider her ambitions because of the uncertainty surrounding her health. She said: "I have my whole life ahead of me and there are so many things I still want to do. But instead of just thinking about my future like other people my age, I have to worry about what FA might take away from me next and it scares me."
Karly said the family was initially told there was no medication available for Brogan, with clinical trials being explored in other countries. Brogan was subsequently unable to take part in a clinical trial because she had passed the age limit for a children's study but was considered too young for the adult trial.
The family also faced a lengthy battle to secure specialist physiotherapy. Karly said the local authority initially offered just three hours of basic physiotherapy a year. After 26 months of fighting for additional support, Brogan eventually secured four hours of neurophysiotherapy a month this year.
Emotional toll and campaign
Brogan has started sharing her exercise journey on Instagram, hoping to encourage others living with Friedreich's Ataxia to keep moving. In her letter, she revealed that there have been times when she has struggled with thoughts of not wanting to be here any more because of the changes to her body and the uncertainty about her future.
Her older sister, Morgan, 26, said: "It was awful. I'm the eldest, so trying to help everyone and make everyone feel good, when there's nothing we can do, I couldn't help."
Omaveloxolone is licensed in the UK and has been approved for use in other countries, but it has not been recommended for NHS use following the breakdown in negotiations between NICE and Biogen. In her letter, Brogan wrote: "One of the hardest parts for me is knowing there is a medication that can help me and people like me, but we still can't access it in the UK. We haven't got time. Every day we are losing more of our independence."
The family delivered the letter on Tuesday, joining members of the wider Friedreich's Ataxia community. Although they did not get the opportunity to speak to anyone, Karly said the support from other families had been encouraging. She hopes to meet Andy Burnham in person and is also expecting a meeting involving Brogan and the health minister, arranged through their MP.
A NICE spokesperson said the organisation was unable to recommend omaveloxolone for NHS use because Biogen had withdrawn its evidence submission. Biogen argued that it withdrew the submission after NICE indicated the treatment was unlikely to receive a positive recommendation. The company said: "We are in regular dialogue with NICE and the NHS to see how we can find a path forward."
A Department of Health and Social Care spokesperson said: "We are very sorry to hear about Brogan's case and we fully understand her mother's concerns." The department said NICE was ready to resume the process with Biogen, adding that the NHS continued to offer services to help manage the condition in the meantime.
Brogan has urged the Government to help secure an agreement that would allow patients like her to access the treatment. "We need more opportunities, more research, and more hope for people living with FA. We need the UK to act now and make a difference," she said. "We are people living with a rare, life-limiting disease, and we are scared. We need change for our future. We need hope."
