Rare Cancers Bill

David Pinto-Duschinsky Excerpts

Friday 14th March 2025 Commons Chamber

[David Pinto-Duschinsky (Hendon) (Lab)]

I start by thanking my hon. Friend the Member for Edinburgh South West (Dr Arthur) for raising this deeply important issue. I know that I speak for everyone here in finding his words about his father-in-law, and the story of Kira, very moving. I join him in welcoming Kira’s family. I pay tribute to my hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh) for her campaigning on this issue—her sister would be very proud of her. I also pay tribute to everyone who has spoken, for both their bravery and the immense bravery of their constituents and their family members.

I particularly want to recognise the hon. Member for Kingswinford and South Staffordshire (Mike Wood) and the story of Dan, the hon. Member for Esher and Walton (Monica Harding), my hon. Friend the Member for Blackpool North and Fleetwood (Lorraine Beavers) for her powerful speech about her father, and my hon. Friend the Member for Falkirk (Euan Stainbank) for his speech about his grandparents. I give a special mention to my hon. Friend the Member for Calder Valley (Josh Fenton-Glynn); I am so sorry that I did not get a chance to meet his brother Alex. He sounds like a phenomenal human being. I am so sorry for my hon. Friend’s loss, but I know that his brother would be very proud of him.

My heart goes out to those who have shared their stories. I thank them for their bravery. As so many stories show, the term “rare cancers” is misleading. The cancers we class as rare in total account for almost half of all cancer diagnoses each year, and as has been mentioned, tragically they account for over half—55%—of all cancer deaths. Given that, on average, one in two of us develops some form of cancer in our lifetimes, the chances of experiencing one of these so-called rare or less common cancers, or seeing them diagnosed in a loved one, are far higher than the term suggests. In the coming year, 182,000 people will be diagnosed with these types of cancers—equivalent to the population of a city the size of Swindon. Sadly, 92,000 people will lose their lives as a result—the population of a city the size of Chester.

Behind each one of those tragic statistics lies a story of families bereaved; of mothers, fathers, sisters, brothers and children lost, and of lives torn apart. That was brought home to me when I visited Chai Cancer Care in my constituency to hear the stories of many people battling to live with cancer. Their bravery is inspiring and they need our help now. I commend the Government’s work to improve cancer outcomes for all. Last month they launched the call for evidence to inform the development of a national cancer plan, and I hope that we can pass the Bill to support those efforts.

Illnesses classified as rare or less common are among some of the very cruellest. The Bill seeks to address some of the fundamental reasons why diagnosis of a comparatively rare form of cancer can leave patients with a disproportionately lower chance of making a full recovery. For a start, rare cancers are harder to diagnose. There are many reasons for that. Some of the more common cancers have screening programmes, which means that many people are diagnosed before they have symptoms. Sadly, that is much less common in the case of rare cancers. Additionally, doctors see the symptoms of common cancers more frequently, and so are more likely to spot them. Also, currently, 82% of patients with a rare or less common form of cancer are not offered a clinical trial.

The Bill will seek to reduce the knowledge gap on rare cancers, proposing a national specialty lead for rare cancers to advise on research design and facilitate collaboration in rare cancer research, and a specific rare cancer registry to share information to improve the recruitment of participants for rare cancer clinical trials. However, although we need to incentivise research, it is not the only barrier that we face to improving rare cancer outcomes. The comparatively lower occurrence of many rare cancers mean that, although drugs to combat them often exist, for economic reasons they are not developed by the pharma industry, despite the pressing and urgent need for them. These orphan drugs have the potential not only to save thousands of lives but to provide hundreds and thousands of families with that most valuable thing, to which my hon. Friend the Member for Calder Valley referred: more time with their loved ones.

Under normal market conditions, pharma companies may be unwilling to invest in the research and development of new treatments for diseases that affect fewer people than the most common forms of cancer. The figures are stark: five of the six less survivable cancers received only 17% of the research funding for more survivable cancers. By proposing that the Secretary of State will be required to review the current laws on marketing authorisations for these orphan drugs, and by placing a duty on Government to support research and innovation further, the Bill would go a long way to achieving something that many of us would view as common sense: incentivising the production of these medical products and putting them to use where they are so badly needed in the diagnosis, prevention and treatment of cancer.

I also pay tribute to my hon. Friend the Member for Edinburgh South West and his team for the work they have done to improve the power of collaboration among Members of Parliament, the charity sector and patient advocates. Drawing on medical expertise and lived experience, their diligence in bringing about the Bill is borne out by the widespread support it has gathered across the House. According to Pancreatic Cancer UK, the Bill has the potential to transform survival for rare cancers by encouraging a greater focus and drive to research, and the Brain Tumour Charity has also praised it.

I know from my own experience, talking to constituents in Hendon and visiting hospitals such as the Royal Free, just how crucial one word can be: hope. Cancer is one of the defining health issues of our time, causing the death of 460 people in this country every single day. We know there is no silver bullet. We must fight cancer on all fronts, from research to prevention to diagnosis to treatment, and I know the Government are wholly committed to doing that. Thanks to huge oncological steps forward in recent years, outlooks for cancer patients have improved dramatically. We have reached the milestone of more than 50% of people diagnosed with cancer in England and Wales now surviving their disease for 10 years or more, yet this number falls sharply for many of the rarer cancers we have talked about today. We must recognise—as this Bill does—where the shortfalls are in our shared knowledge and the resources we put into the rarer forms of this disease. We have a duty to put this right. We must ensure that those suffering from rare and less common forms of cancer, and those yet to be diagnosed, have as much cause for hope as possible. I support this Bill.