I'm going blind at aged 19 – medicine could save my sight but I can't get it here in Scotland
They have now launched a crowdfunder to desperately save Beau's sight
'DEVASTATING' I'm going blind at aged 19 – medicine could save my sight but I can't get it here in Scotland
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THE family of a Scots teen facing blindness from a rare brain tumour is pleading with the Scottish Government to grant access to life-saving medication.
Beau Johnston, 19, from Edinburgh, was diagnosed with Hypothalamic Optic Pathway Glioma, a rare and slow-growing tumour, at just two years old.
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Beau Johnston with her mum Emma Johnstone as they plead for access to the rare meds
Credit: STV NEWS
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The family have asked the Scottish Government for help to get access to the treatment available in the States
Credit: STV News
The condition has already robbed her of sight in her right eye and left her with less than half the visual field in her left.
Now a Glasgow University law and French student, Beau was preparing for a year abroad to study in Paris when she was hit with the devastating news of a second tumour dangerously close to her left eye.
Doctors have warned it's near the last remaining optic nerve fibres keeping her vision intact.
Her family had hoped to secure a drug available in the US – Tovorafenib – which could save her sight.
But the medication, costing £26,000 a month, is no longer available for compassionate access in the UK after being taken over by a new pharmaceutical company.
Speaking to STV News, Beau said: 'Knowing there's medicine out there that could change my life, but is being held back due to money and legal issues, is devastating.
"It's not a business to me; it's my life.
"We're spreading the word, hoping there's a way to access and fund it.'
Beau, who is enduring gruelling chemotherapy, now considers herself 75 per cent blind and fears total vision loss without the drug.
She added: 'My body builds up tolerance to medications.
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"I get tired, nauseous, and mentally drained. Studying has been a real struggle.'
The tablet form of Tovorafenib would allow her to avoid debilitating side effects from proton therapy, a radiation treatment, and spend less time in hospital.
'We're at a point where it's really threatening my sight, and we have no option but to treat it,' she said.
Her mum, Emma Johnston, 47, said time is running out to save her daughter's sight.
Emma, who is a Doctor, said: 'We hoped she'd go to Paris for her third year and live a normal life. It's been really hard for the family.'
The treatment would cost £350,000 without NHS support.
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Student Beau Johnston
Credit: Stv News
A crowdfunder has been launched, but the family is also considering remortgaging their home.
MSP Angus Robertson and Health Secretary Neil Gray have raised the issue in Westminster, but Emma fears little can be done in time.
'It's devastating knowing the timing is against us,' she said.
'I understand the rules and regulations around drugs, but when it's your child, it's hard to accept. We've got to explore every option.'
Health Secretary Neil Gray said: 'Beau Johnston is clearly an inspiring young lady.
While Tovorafenib doesn't currently have a UK licence, Ipsen is meeting the Chief Pharmaceutical Officer to explore urgent options to make it available.'
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