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MP vows to help teenager access life-changing drug

Debbie Tubby,at Parliament Squareand
Lewis Adams,Essex
News imageShaun Whitmore/BBC Brogan Johnson has long blonde hair and is wearing a black jumper. She is arm-in-arm with her sister, who has long brown hair and is wearing a cream jacket, and her mother, who has long blonde hair that is curly at the end and is wearing a black long-sleeved top. They are standing on Downing Street in London.Shaun Whitmore/BBC
Brogan Johnson (centre) dropped an open letter off at 10 Downing Street with her sister and mother on Tuesday

An MP has vowed to help a 17-year-old who is fighting for a life-changing drug to be made available on the NHS.

Brogan Johnson, from Leigh-on-Sea, Essex, cannot afford the medication that would slow her Friedrich's ataxia condition, which affects her heart, nervous system and mobility and is life-limiting.

The drug, omaveloxolone, has been approved for private use in the UK, but costs about £1,000 a day.

David Burton-Sampson, Labour MP for Southend West and Leigh, said it was a "really tragic" situation.

Friedrich's ataxia is a progressive neurodegenerative disease that affects about 1,100 people in the UK and gives them an average life expectancy of 35-50 years.

Omaveloxolone, which is branded as Skyclarys, was approved as a treatment for the condition in April 2025.

However, discussions between pharmaceutical company Biogen and the National Institute for Health and Social Care (NICE) to get it on the NHS have stalled.

NICE is the government body that approves drugs for use and rules on which treatments should be available on the health service.

News imageShaun Whitmore/BBC David Burton-Sampson has a shaved head and is wearing a black suit jacket, white shirt and claret tie. He is smiling in front of a crowd of people gathered at Parliament Square in London.Shaun Whitmore/BBC
David Burton-Sampson said his constituent's problem was "really tragic"

Burton-Sampson said: "There's some progress being made now in trying to get Biogen in front of the right people at the Department of Health and Social Care, including the minister."

He said accelerating the discussions was crucial so people like Brogan could "live a better life".

"We are doing everything in our power to try and make that difference and we'll continue to do so," Burton-Sampson pledged.

"There's a drug out there that could slow this down, and the fact she currently doesn't have access to this drug is really, really tragic."

Brogan and her family delivered a letter to 10 Downing Street on Tuesday, pleading with the prime minister for help.

It followed a petition on the matter attracting 100,000 signatures, including from ex-heavyweight champion boxer Frank Bruno.

Brogan said of the drug: "It will be a massive deal, just having that little bit of hope that I can be cured one day and I can live a normal life.

"It's just awful, I wouldn't wish this on any other teenager."

News imageShaun Whitmore/BBC Two women holding placards in support of Brogan in London. One says "help us fight for hope" and the other says "this is Brogan's future you're deciding".Shaun Whitmore/BBC
Brogan's mother and sister were among a crowd gathered in London to support her cause

A NICE spokesperson said it had been unable to recommend omaveloxolone for NHS use as Biogen had withdrawn from the discussions.

However, Biogen argued it pulled out as NICE had indicated it was unlikely to grant approval.

"We are in regular dialogue with NICE and the NHS to see how we can find a path forward," the company said.

A Department for Health and Social Care spokesperson insisted Nice was "ready to resume the process".

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