Cancer charity warns of pharmaceutical firms holding up brain tumour research

Siobhain and Margaret McDonagh on holiday in Málaga, Spain. Margaret died from a glioblastoma tumour in June 2023. Photograph: Siobhain McDonagh

Potential new treatments for brain cancer are being hampered by the failure of pharmaceutical companies to provide the drugs required for research and by regulatory delays, a leading cancer charity has warned.

Brain tumours kill more children and adults under 40 in the UK than any other cancer, but research has been underfunded for years. About 12,000 are diagnosed with a primary brain tumour in the UK each year.

Brain Tumour Research is concerned by reports from senior clinicians of a reluctance to provide the costly drugs needed for research because brain cancer is a rare condition.

The charity’s Hugh Adams said the delivery of new drugs was “stifled” by a lack of research capacity and challenges in obtaining drugs for trials. He said: “We need a new framework that treats this disease as a clinical priority.”

Siobhain McDonagh, a Labour MP, has been campaigning for a law to support brain tumour research after her sister, Baroness McDonagh, the former Labour general secretary, died from a glioblastoma brain tumour last June. McDonagh will introduce a bill to parliament this month, urging MPs to back measures to increase the number of clinical trials.

She wants to see the Medicines and Healthcare Products Regulatory Agency (MHRA) and the National Institute for Care and Excellence fast-track applications for the approval of treatments for rarer cancers. She also wants new regulations requiring drug companies to provide a supply of drugs to treat brain tumours. “We want to put pressure on the pharmaceutical firms to provide the drugs so they can be trialled,” she said. She said companies were reluctant to provide the drugs because it was not financially viable or they were concerned at the risk of unfavourable results.

Paul Mulholland, a consultant in medical oncology, submitted evidence last month to the parliamentary health and social care committee about the problems in obtaining drugs for trials for glioblastoma tumours. Some of these drugs may be treatments for other cancers which might have the potential to be repurposed for brain cancer.

“There has been no improvement in treatment for 30 years,” he said. “The key problem … is that we are not doing enough clinical trials. The pharmaceutical industry has not provided the drugs to carry out these trials and has not been interested in the patient group. As such, we need regulatory change to encourage the pharmaceutical industry to invest in finding a cure.”

In May 2018, the government announced £40m for brain tumour research, but an all-party parliamentary group on brain tumours report in February last year found just £15m had been awarded, with “£6m of this not easily identifiable as relevant to brain tumours”.

A Department of Health and Social Care spokesperson said: “Brain cancer is a devastating disease, which is why we’ve made £40m available for research projects specifically looking for new treatments and therapies to tackle this illness.”

Amit Aggarwal, executive director of medical affairs at the Association of the British Pharmaceutical Industry (ABPI), said: “Pharmaceutical companies exist to find, develop, and deliver effective treatments for patients and they do already provide medicines for external clinical trials for new uses voluntarily, including for brain cancers.

“Forcing companies to release their products for every request risks undermining public trust in medicines if for example, a medicine doesn’t work for a new use, or worse, something goes wrong in a clinical trial the originator company had no involvement with.”