Teen begs PM for expensive life-extending drugs
Shaun Whitmore/BBCA teenager fighting for a life-changing drug to be available on the NHS has urged the prime minister for help.
Brogan Johnson, 17, from Leigh-on-Sea in Essex, has a rare genetic disorder called Friedreich's ataxia, which affects her nervous system, mobility and heart.
Omaveloxolone, which could slow her condition, costs about £1,000 a day to fund privately in the UK.
"Every single day I struggle knowing that mums fix everything and I can't fix this," said Brogan's mother, Karly.
The pair delivered a letter to 10 Downing Street on Tuesday, pleading with Andy Burnham to assist Brogan and the 1,100 others living with the life-limiting condition in the UK.
Some of those sufferers joined them at Westminster.
A petition on the matter has already attracted 100,000 signatures, including from ex-heavyweight boxer Frank Bruno.
Shaun Whitmore/BBCThe UK's medicines regulator approved Omaveloxolone, which is branded as Skyclarys, as a treatment for Friedreich's ataxia in April 2025.
However, discussions between the National Institute for Health and Care Excellence (NICE) and pharmaceutical company Biogen to get it on the NHS have broken down.
"Knowing it's in the country and I can't access it is absolutely heartbreaking," Karly said.
Brogan was diagnosed with the progressive neurodegenerative disease in March 2024, and it now affects her heart, speech, swallowing, mobility and hearing.
"The fact it's so rare - I didn't know where to research this condition, I didn't know where to start," Karly told BBC Essex presenter Ben Fryer.
"She's a fighter to try and keep Friedreich's at bay, but there's only so much fighting she can do."
Shaun Whitmore/BBCA NICE spokesperson said it was unable to recommend the drug for NHS use as Biogen withdrew its evidence submission.
However, Biogen argued it withdrew as NICE 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.
Because 100,000 people signed the petition, MPs will consider debating it in Parliament.
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."
They 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.
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