Beau Johnston, 19, faces the possibility of losing the rest of her vision after doctors discovered a new tumor affecting her functioning optic fibers. Her family is urging the Scottish Government to intervene and make treatment accessible through the NHS to help preserve their daughter's sight.
Since the age of two, Beau has been visually impaired due to ongoing treatment for brain tumors. She has undergone eight rounds of chemotherapy and debulking surgery to reduce the size of her hypothalamic optic pathway glioma. Recently, her family learned that a new brain tumor is jeopardizing her vision by impacting the remaining optic pathway fibers.
They are seeking a medication that could treat this condition, but it comes with a staggering price tag of $35,000 (£26,000) per month. Beau expressed her frustration to STV News, stating, “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 affects me so much. It isn’t a business to me; it’s my life.”
“We’re doing everything we can to raise awareness, hoping to find a way to access and fund it,” Beau explains. A law and French student at Glasgow University, she describes herself as approximately “75% blind.”
For the past year, she has been undergoing chemotherapy, which she says takes a significant toll on her body. “I develop a tolerance to various medications, and I often feel extremely fatigued and nauseous. It’s also mentally exhausting.
“Getting through my first and second years of university has been quite challenging. Studying is much more exhausting than it would be otherwise.”
Despite 17 years of treatment, a recent scan revealed a new tumor on Beau’s remaining functional nerve fibers. She and her family had hoped that a promising new drug in the United States, Tovorafenib, would help preserve her vision. However, they were informed that it is no longer available for compassionate access in the UK due to its acquisition by a new pharmaceutical company. Unlike lengthy hospital stays, this treatment comes in tablet form.
The side effects of this treatment are generally less severe than those associated with proton therapy, which employs high-energy protons to target and destroy cancer cells.
“It’s all about weighing the risks—considering how much the tumor is growing, its potential impact on my life, and whether the treatment is worth it for my current quality of life.
“We’ve reached a point where it’s seriously threatening my vision, and we have no choice but to proceed with treatment.”
Beau, like any other teenager, wants to embrace new experiences, but her condition has put her life on pause. She had planned to study in Paris for her third year of university, but now she must reconsider her options.
“It’s been terrible. I’m 19, and I want to enjoy university, travel, and do the things that young people typically do, but this situation complicates everything—especially with exams. It’s a nightmare trying to concentrate with everything that’s happening.”
"There are moments when I'm walking with a friend, admiring a sunset, and I think, 'I might never see this again.' It's so stunning, and one day it could be gone forever.
The thought of losing my sight is terrifying, especially considering all the experiences I might miss out on. At my age, I feel like I haven't lived as fully as others, and it's distressing to think about what I could lose.
Emma Johnstone, Beau's mother, expresses that they are racing against time to secure accessible treatment before Beau loses the remaining vision she has.
"We had hoped she would go to Paris for her third year and enjoy a normal life, so this has been incredibly difficult for the entire family."
She estimates that the total cost of treatment could reach around $350,000. The family has started a fundraiser and is exploring other funding options, including tapping into the equity of their home."
She mentioned that she has contacted the manufacturer, IPSEN, but the company has informed her that the drug has not yet begun production. The family’s local MSP, Angus Robertson, along with Neil Gray, is also addressing the issue at Westminster, although Emma worries that little can be done.
“It’s incredibly frustrating and heartbreaking to realize that the timing is not on our side. We don’t have enough time to protect her vision.
“From a medical standpoint, I understand the importance of the rules and regulations that ensure drugs are strictly controlled. However, when it’s your child affected by that bureaucratic red tape and financial limitations, it becomes very challenging.
“I need to be sure that we have thoroughly explored this option and made every effort to obtain it.”
Health Secretary Neil Gray stated, “Beau Johnstone is clearly an inspiring young lady, and I understand why she and her family are seeking access to a treatment that could help preserve her remaining eyesight.”
"Tovorafenib is not currently licensed for use in the UK. However, the pharmaceutical company Ipsen is in discussions with the chief pharmaceutical officer to explore urgent options for making Tovorafenib available to Beau."
