Archie Goodburn, a 24-year-old champion swimmer who has a rare, inoperable form of brain cancer, is calling for the government to do more to help people with the condition.

“I grew up representing my country, and
I want to see my country supporting me back,” he said.

Two years ago, Goodburn’s life changed. A few months before the Paris Olympics qualifiers, he started experiencing strange episodes during training, which grew in intensity: a loss of strength, numbness on his left flank, a deep feeling of fear and nausea.

“I felt like my consciousness was being pulled away from me,” he said.

In April 2024, he missed out on qualifying by a few tenths of a second, and soon after it was discovered that the cause was three oligodendrogliomas, rare tumours that make up about 3% of all brain cancer diagnoses.

Vorasidenib, a breakthrough treatment, recently gave Goodburn a chance to compete again, this time at the Commonwealth Games in Glasgow next month. It delayed the immediate prospect of chemotherapy and radiotherapy, which would have impaired his cognitive ability and interrupted his training, as well as his chemical engineering degree.

But he says one new drug in 20 years is not enough. “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.”

Brain cancer is the biggest cancer killer for children and adults under 40, but since 2002 it has received just 1% of the government’s national cancer research budget, and progress is limited in UK drug development for the disease.

Goodburn highlights the “translational gap” between early phase research discoveries and drug funding. The issue is not the inadequacy of research, but the difficulty in taking that research into clinical trials that people can access.

The all-party parliamentary group on brain tumours called this gap the “valley of death” for patients, which they blame on a siloed, risk-averse funding system for a complicated disease.

Even when there is funding, regulation can stop it from being used. This is why a small fraction of the £40m pledged by the government for brain cancer in 2018 has been spent by ministers in years that followed.

Goodburn and the Brain Cancer Justice campaign are urging the government to immediately release the rest of the £40m that has been pledged and ensure it reaches frontline scientists. They also want a named brain cancer lead in the government, more genome sequencing for patients when they’re diagnosed, which will expand their access to clinical trials, and patients to be given the “right to try” potentially life-saving treatments.

In response to the petition, the Department of Health and Social Care said it understands 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”.

The standard treatment for Goodburn’s cancer is radiotherapy and chemotherapy, which he would have begun in July of last year had he not been given Vorasidenib through an expanded access programme. The drug halts the production of the proteins that help his tumours grow.

The drug was only made available to UK patients in the last three months, after the National Institute for Health and Care Excellence (Nice), the public body that makes drug purchase recommendations to the NHS, provisionally recommended that it should not be. After campaigning by many in the brain cancer community, including Goodburn, that decision was overturned.

Shortly after starting on Vorasidenib, Goodburn broke the Scottish record in the 50m breast stroke, which is the event he’ll be competing in at the Commonwealth Games. He says the experience showed him the power of new treatments to change people’s lives and to live unrestricted by their diagnosis.

“There’s that much space for change. Change is so possible,” he said.

As someone who watched the 2014 Commonwealth Games “as a wee kid” in Glasgow, Goodburn is looking forward to stepping out into the arena come July. But his most daunting task right now 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.

It hasn’t been easy for Goodburn to balance campaigning in Westminster with training in the pool, but he 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.”