Rare Cancers Bill

Sarah Smith Excerpts

Friday 14th March 2025 Commons Chamber

[Sarah Smith (Hyndburn) (Lab)]

I will try to keep my remarks brief as I am keen that other colleagues get to speak in this important debate. As we have heard, rare cancers are defined as those that affect fewer than one in 2,000 individuals; in Hyndburn, that equates to an estimated 1,500 people being impacted. Behind every number is a story, as we have heard, of a patient and those who love them, of lives cut short that could have been saved or prolonged had the right diagnosis and treatment been available.

I want to spend a few minutes speaking about constituents in Hyndburn who have reached out to me and about some of my personal experience. I am grateful to Carol who reached out on behalf of herself and her daughter Emma, who is battling a rare cancer and is the mum of two girls. Every day, and every advancement, could be transformational for that family. I thank Janet, who lost her granddaughter Elizabeth, for also reaching out. Elizabeth was a real fighter; she raised over £100,000 before she died, and she left her body to research, demonstrating what individuals are doing in this fight. It is now the Government’s turn to step in and meet what has already been put in by families and communities.

I want to thank Sheila, who sadly lost her sister Margaret and her father-in-law to pancreatic cancer. I also want to mention Milly, the incredible young girl who died of leukaemia when she was just 11 years old, not 18 months after being diagnosed. Her mother Lorraine always reminds me to talk about Milly’s life and what she brought while she was with us. She should have turned 16 last year, but she was the girl with the brightest smile who took on life and everything it threw at her and who was brave to the last. We owe it to the memory of Milly and her mum’s incredible work with their charity Milly’s Smiles, to do all we can to tackle this in future and to take action today.

When I was in my late 20s, one of my best friends lost both her mother and her sister within a year, one to melanoma and the other to ovarian cancer. The reality is that if they had been living in America, for at least one of them, if not both, we would have had more time. That is not good enough; I refuse to accept that, and today we can take steps to ensure that people like my friend do not have to be left literally with none of their family and can have that precious time, however long that might be, because every day, week and birthday really counts.

The Rare Cancers Bill represents a comprehensive approach to addressing the disparities faced by individuals with rare cancers. By revising the regulatory frameworks, promoting dedicated research and facilitating patient participation in clinical trials, this legislation has the potential to transform the landscape of rare cancer treatment in the UK. I am glad that this Labour Government are supporting the Bill as part of the development of the desperately needed national cancer plan, recognising that the provisions of the Bill are a crucial step towards equity and excellence in cancer care for all patients, regardless of the rarity of their diagnosis.