A mother said it was a “huge relief” to know the prime minister had read a letter from her daughter calling for a potentially life-changing drug to be made available on the NHS.
Brogan Johnson, from Leigh-on-Sea in Essex, was diagnosed with Friedreich’s ataxia in 2024, and the drug, omaveloxolone, costs £1,000 a day to fund privately in the UK.
The 17-year-old and mum Karly Johnson delivered the letter to 10 Downing Street on 13 October and their MP David Burton-Sampson met Andy Burnham last week to discuss it.
“Brogan couldn’t believe it when I told her that Andy Burnham had her letter in his hand,” said Karly.
“It gives us hope – that he’s read the letter – it just feels like we’ve been going round in circles.”
Friedreich’s ataxia is a progressive neurodegenerative disease that gives people an average life expectancy of 35-50 years.
Brogan was diagnosed with the condition in March 2024, and it now affects her heart, speech, swallowing, mobility and hearing.
Discussions between pharmaceutical company Biogen and the National Institute for Health and Care Excellence (NICE) – the government body that approves drugs for the NHS – have been put on ice.
About 1,100 people in the UK are believed to have the condition.