Wife Campaigns for Brain Tumor Tissue Changes in Parliament

A man with terminal brain cancer believes legislation requiring the storage of brain tissue after surgery could have extended his life. Matt Collins, 38, was diagnosed with a brain tumour and underwent a six-hour operation for its removal. Though, the cancer has returned, and he has been given 12-18 months to live.

Collins raised £100,000 for DcVax-L, a personalized vaccine developed at King’s College Hospital, using cells from his own tumour. Unfortunately, due to the way his brain tissue was stored after surgery, he only received four doses of the treatment instead of the planned ten.

“It wouldn’t have cured my cancer, but it could have given me a couple more months,” Collins said. “Its so important to have the tissue stored properly, and that people are aware of the options they have. I was never told there was a vaccine available.”

The charity brain Tumour Research is advocating for increased frozen tissue storage capacity across the UK. Dr. Karen Noble, Director of Research, Policy and Innovation at the charity, explained that personalized treatments for brain tumours depend on detailed genetic details obtained from the tumour tissue after surgery.

“The way tissue is stored post-surgery has a critical impact, because there is a real risk that powerful information is lost, closing down pathways to clinical trials and innovative treatments,” Dr. Noble stated. Brain Tumour research is supporting the Owain’s Law campaign, which seeks to mandate the storage of tumour tissue.

The Welsh government has stated that the case for new legislation has not been made. A spokesperson said that clinical teams already use “expert judgment” to balance diagnostic needs with research potential,and that overriding this discretion could hinder timely diagnoses or create conflicts when tissue volume is limited.

They added that they will continue to collaborate with relevant organizations “to ensure NHS Wales practices in tissue archiving and access to genomic testing remain in the best interests of our patients.”

The UK’s Department of Health and Social Care (DHSC) highlighted its investment of £13.7 million in the National Institute for Health and Care Research’s (NIHR) UK-wide Brain Tumour Research Consortium to support research and the progress of new treatments.

Key Takeaways:

• Matt Collins’ case highlights the importance of proper brain tissue storage for potential personalized cancer treatments.
• The DcVax-L vaccine, while promising, requires sufficient stored tumour tissue to be effective.
• Brain Tumour Research advocates for increased tissue storage capacity and supports Owain’s Law.
• The Welsh government prioritizes clinical judgment in tissue handling, while the UK DHSC is investing in brain tumour research.