Rare Cancers Bill

Allison Gardner Excerpts

Friday 11th July 2025 Commons Chamber

[Dr Allison Gardner (Stoke-on-Trent South) (Lab)]

Stella Gilbert, née Forster, was a much-beloved wife, mother, grandmother and sister to my partner, Jim. She died of a rare cancer. Stella was great—my partner’s only sibling, a huge matriarch and, as we found out at her funeral, given to bossing her local vicar about. She had bile duct cancer, which affects approximately 2,000 people a year in the UK.

In the Bill’s terms, bile duct cancer is a rare cancer; the Bill classes rare cancers as those that affect no more than one in 2,000 people, and bile duct cancer affects 0.06 in 2,000. Worryingly, research suggests that that incidence is increasing. I am grateful that the Bill allows for some flexibility, because if bile duct cancer were to pop over that cut-off of one in 2,000, it would go into a different category. That flexibility is appreciated.

Guts UK states that the cause of bile duct cancer is unknown in six to seven out of 10 patients. It is a rare cancer that is increasing in prevalence, often with causes unknown, and nearly 3,000 people a year die from it. Would it not be better therefore not only to prevent this cancer from increasing in prevalence, but to make it even rarer and more curable? The Bill opens the door to that. It will allow for more focus on rare and less survivable cancers.

Research is crucial in tackling cancer, and I am heartened by this Government’s commitment to tackling all cancer types. A national cancer plan is due to be published following the NHS 10-year health plan, and the DHSC has committed more than £1.6 billion for research to the National Institute for Health and Care Research, which is quite rightly treating cancer as a major priority and allocating funding accordingly.

As an officer of the all-party parliamentary group on the less survivable cancers, I am particularly grateful for the commitment to tackling brain cancer, which I have heard a lot about in this place today, in partnership with organisations such as the Tessa Jowell Brain Cancer Mission and Brain Tumour Research. I also welcome the funding call for the brain tumour research consortium, which I read about recently.

I cannot stand in this place and debate a Bill on rare cancers and not mention pancreatic cancer, which is a relatively rare cancer and a less survivable one. It is the fifth biggest cancer killer in the UK. My mum, Breeda, died of pancreatic cancer. She fell ill on a Saturday, was diagnosed on the Sunday and was dead by the following Saturday. One week after that, my father died of oesophageal cancer—not a rare cancer, I believe, but a less survivable one. My sister’s mother-in-law, Doreen, also sadly passed from pancreatic cancer after a year-long battle. We are, indeed, surrounded by cancer. The APPG has addressed the issue of the early detection of such cancers, so we hope to one day hear fewer stories like my mum’s. I thank Pancreatic Cancer UK for its support.

I welcome the Bill, which offers an entirely reasonable set of steps for researching, reviewing and, I hope, enabling the development of so-called orphan drugs—like my hon. Friend the Member for Edinburgh South West (Dr Arthur), I dislike the term intensely. The appointment of a national specialty lead for rare cancers will be so helpful in and of itself.

In passing the Bill today, we will start the journey to a world where wonderful people, like Jim’s sister Stella, my mum Breeda and my sister’s mother-in-law Doreen, do not hear the words, “It is inoperable. It is too late to treat. There is nothing more we can do.” I thank my hon. Friend the Member for Edinburgh South West for introducing the Bill. I will vote for it today, in memory of Stella, Breeda and Doreen.