PM handed teen's letter calling for access to drug

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.

Burton-Sampson, who represents Southend West and Leigh, said the meeting on 26 October felt productive and "people's voices are not just going into an echo chamber".

"I can't promise that we will get it to change, but we have raised the profile," he said.

The MP said he planned to speak with health ministers and "the government is showing an interest".

A petition on the matter has attracted more than 100,000 signatures and is due to be discussed in Parliament next year.

In a post on Facebook, Burton-Sampson said Burnham would be replying to Brogan.

A Department of Health and Social Care spokesperson said NICE had not been able to evaluate omaveloxolone for use in the UK - branded as Skyclarys - because Biogen withdrew from the process last year.

"We are very sorry to hear about Brogan's case, and we fully understand her family's concerns," they added.

The spokesperson said NICE was "ready to resume the process" with Biogen, and pointed out that the NHS offered services to manage the condition in the interim.

In a previous statement, Biogen said: "We are in regular dialogue with NICE and the NHS to see how we can find a path forward."

It has been contacted for an updated comment.

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