Rare Cancers Bill

Johanna Baxter Excerpts

Friday 14th March 2025 Commons Chamber

[Katrina Murray (Cumbernauld and Kirkintilloch) (Lab)]

There is hardly a family in the UK who have not been touched by cancer in some way—this morning’s debate has shown how much we reflect the population—and the feeling of fear, anxiety and heartbreak that comes with it. But for those diagnosed with a rare cancer, the challenges are even greater: delayed diagnosis, fewer treatment options and the shocking lack of research, which means that these patients and their families are often left in the dark. I am glad that we are united in saying that that has to change. I am so proud to support the Bill introduced by my hon. Friend the Member for Edinburgh South West (Dr Arthur)—I think I possibly worked with his father-in-law at Bell Baxter many years ago—because we now have the chance to turn the tide and focus on people with rare cancers.

We have talked a lot about the statistics. Rare cancers still do not get the same investment in research or access to clinical trials as common cancers. As a result, survival rates for some of the least survivable cancers, like pancreatic cancer, brain cancer and stomach cancer, are stuck at just 16%, which is not good enough.

Seven weeks ago, I lost my dad. More time has now passed since his death than the time we had between his diagnosis and his passing. The grief is still exceptionally raw.

[Johanna Baxter (Paisley and Renfrewshire South) (Lab)]

I pay tribute to my hon. Friend’s dad. He would be extremely proud of her, and of the speech that she is making.

[Katrina Murray]

I thank my hon. Friend for that intervention.

The Brain Tumour Charity and Brain Tumour Research have highlighted time and again that just 1% of national cancer research funding goes towards brain tumours, despite their being the biggest cancer killer of children and adults under 40. That is totally unacceptable. People who are dealing with these devastating diagnoses need more than words; they need real investment in clinical trials and better pathways to diagnosis. The Bill is about fairness—it is about tackling the lack of funding, the difficulty in getting patients into research, and the absence of clear Government leadership in this area.

People miss out on life-changing trials because they simply do not know that they exist. My hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh) talked about having a universal system in this country. We also have one of the most siloed systems. People in one part of the system often do not know what is going on in other parts, and we need that to stop. We have talked a lot about the approaches in places like the United States, where targeted policies have led to surges in new treatments for rare cancers. But we also need to recognise what else is going on in the United States: a raft of Executive orders from the White House is putting higher education and current clinical trials into a tailspin.

I want to pay tribute to the people who have helped me a lot over the last few weeks, in particular my hon. Friend the Member for Mitcham and Morden. She talks about being angry. I just remember that anger is a natural stage of grief, but it is also a massive driver for change and for getting things done. I am not at the angry stage just yet, but I will be at some point, and when I get there I will certainly be joining my hon. Friend; it is something we all get.

Somebody said to me many years ago that the greatest gift that any of us can give is the gift of time. No matter our political differences on other things, we have a chance today to give others the gift of time and to make sure no other families have to experience what we have had to go through. Please pass this Bill. Thank you.

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[Johanna Baxter (Paisley and Renfrewshire South) (Lab)]

I will be brief, because I understand that we are at the end of the debate, but I rise to support the Bill and pay tribute to my hon. Friend the Member for Edinburgh South West (Dr Arthur) for bringing it forward, and for the dignified, collegiate manner in which he has gone about things. Up to 95 people in Paisley and Renfrewshire South will be facing a less survivable cancer. That is 95 people who will wait longer for a diagnosis, will face a postcode lottery to access specialist treatment, and will be left asking why there are so few treatment options available.

The truth is that rare cancers do not receive the research attention or funding that they need. The Bill would take decisive action to change that. It would introduce measures to break down systemic barriers preventing research and innovation in rare cancers. These are not abstract policy changes but lifesaving reforms that would give patients with rare cancers greater access to clinical trials. Researchers would have better tools to study the diseases, and pharmaceutical companies would be given stronger incentives to invest in treatments that could transform lives.

Behind every rare cancer diagnosis is a person fighting for their future, a family searching for answers and healthcare professionals looking for better treatment options. We cannot allow those individuals to be left behind simply because their condition is considered rare. We have the opportunity to change that. By supporting the Bill, we send a clear message that no cancer is too rare to matter, and that no patient should be forgotten. I am proud to support the Bill and thank my hon. Friend for bringing it forward.

[Madam Deputy Speaker (Ms Nusrat Ghani)]

I call the shadow Secretary of State.