Key facts
- Champion swimmer Archie Goodburn has a rare, inoperable form of brain cancer.
- He is calling for increased UK government support and funding for brain cancer research and treatment.
- A new drug, Vorasidenib, has allowed him to continue competing and training.
- Goodburn highlights a "translational gap" in getting research into accessible clinical trials.
- He advocates for the release of pledged government funds and expanded patient access to treatments.
Archie Goodburn, a 24-year-old champion swimmer, is publicly urging the UK government to increase its efforts in supporting individuals diagnosed with rare and inoperable brain cancers. Two years ago, Goodburn began experiencing concerning symptoms during training, which were later identified as being caused by three oligodendrogliomas, a rare type of brain tumour.
Despite narrowly missing qualification for the Paris Olympics, Goodburn's life was significantly altered by the diagnosis. A breakthrough treatment, Vorasidenib, has provided him with a chance to resume his swimming career, aiming for the Commonwealth Games next month. This treatment has also allowed him to postpone chemotherapy and radiotherapy, which would have negatively impacted his cognitive abilities, training, and pursuit of a chemical engineering degree.
Goodburn asserts that the current pace of drug development and funding for brain cancer research is insufficient. He points to the "translational gap," where promising early-stage research struggles to progress into accessible clinical trials, a problem described by the all-party parliamentary group on brain tumours as the "valley of death" for patients. He also notes that a significant portion of the £40 million pledged by the government in 2018 for brain cancer research has yet to be allocated.
Goodburn and the Brain Cancer Justice campaign are calling for the immediate release of the remaining pledged funds, the appointment of a dedicated government lead for brain cancer, increased genome sequencing for patients to improve trial access, and the implementation of a "right to try" policy for potentially life-saving treatments. The Department of Health and Social Care has stated its understanding that more research is needed and its commitment to ensuring patient access to innovative medicines.
Vorasidenib, which halts the growth of Goodburn's tumours, was only recently made available to UK patients after a campaign, including Goodburn's, overturned an initial recommendation by NICE against its purchase. Following the commencement of this treatment, Goodburn achieved a new Scottish record in the 50m breaststroke, underscoring his belief in the transformative power of new medical advancements.