Archie Goodburn, a 24-year-old champion swimmer diagnosed with a rare, inoperable form of brain cancer, is calling on the government to increase support for people with the condition. “I grew up representing my country, and I want to see my country supporting me back,” he said.
Life-changing diagnosis
Two years ago, Goodburn’s life changed dramatically. A few months before the Paris Olympics qualifiers, he began experiencing strange episodes during training, which intensified over time: loss of strength, numbness on his left side, and a deep sense of fear and nausea. “I felt like my consciousness was being pulled away from me,” he recalled.
In April 2024, he missed qualifying by a few tenths of a second. Soon after, doctors discovered three oligodendrogliomas—rare tumours that account for about 3% of all brain cancer diagnoses.
Breakthrough treatment
Vorasidenib, a breakthrough drug, recently gave Goodburn the chance to compete again, this time at the Commonwealth Games in Glasgow next month. The treatment delayed the immediate need for chemotherapy and radiotherapy, which would have impaired his cognitive abilities and interrupted his training and chemical engineering degree.
However, Goodburn stresses that one new drug in 20 years is insufficient. “Vorasidenib only bought me four years, according to the trials. I need more. And I’m not going to stop [campaigning] until my last breath.”
Funding disparities
Brain cancer is the leading cancer killer for children and adults under 40, yet since 2002 it has received just 1% of the government’s national cancer research budget. Progress in UK drug development for the disease remains limited.
Goodburn highlights the “translational gap” between early-phase research discoveries and drug funding. The issue is not a lack of research but the difficulty in translating it into accessible clinical trials. The all-party parliamentary group on brain tumours calls this gap the “valley of death” for patients, blaming a siloed, risk-averse funding system.
Even when funding is available, regulations can block its use. This explains why only a small fraction of the £40m pledged by the government for brain cancer in 2018 has been spent in subsequent years.
Campaign demands
Goodburn and the Brain Cancer Justice campaign urge the government to immediately release the remaining £40m and ensure it reaches frontline scientists. They also call for a named brain cancer lead in the government, increased genome sequencing for patients at diagnosis to expand clinical trial access, and a “right to try” potentially life-saving treatments.
In response to the petition, the Department of Health and Social Care acknowledged that “more needs to be done to boost research into brain tumours” and is “committed to securing patient access to effective and innovative new medicines.”
Treatment journey
The standard treatment for Goodburn’s cancer is radiotherapy and chemotherapy. He would have started these in July last year but received Vorasidenib through an expanded access programme. The drug halts production of proteins that help his tumours grow.
Vorasidenib was only made available to UK patients in the last three months after the National Institute for Health and Care Excellence (Nice) initially recommended against it. Following campaigning by Goodburn and others in the brain cancer community, that decision was overturned.
Shortly after starting Vorasidenib, Goodburn broke the Scottish record in the 50m breaststroke—the event he will compete in at the Commonwealth Games. He says the experience demonstrated the power of new treatments to change lives and allow people to live unrestricted by their diagnosis. “There’s that much space for change. Change is so possible,” he said.
Balancing activism and sport
As someone who watched the 2014 Commonwealth Games “as a wee kid” in Glasgow, Goodburn looks forward to stepping into the arena in July. But his most daunting task is sitting in the Westminster Hall viewing room on Monday while MPs debate the petition he and Brain Cancer Justice spent months collecting signatures for.
Balancing campaigning in Westminster with training in the pool has been challenging, but Goodburn remains driven. “I campaign, if I’m being completely honest, because of the disparity in care, the lack of funding, but also because I believe that my campaigning can actually make a difference to my own future,” he said. “In some ways, it’s a treatment of its own.”
