Rare Cancers Bill

Clive Jones Excerpts

Friday 14th March 2025 Commons Chamber

[Clive Jones (Wokingham) (LD)]

I have to say, Madam Deputy Speaker, that as I was waiting to speak, I was very pleased that you did not call me after the hon. Member for Calder Valley (Josh Fenton-Glynn) because I do not think I would have been able to get through parts of my speech so shortly after listening to his story; he did really well.

I was diagnosed with breast cancer in 2008, which is relatively unusual for a man, and the hardest thing I ever had to do was tell my two daughters, who were 13 and 14 at the time, about my diagnosis. It was an experience that left me wondering if our family of four was about to become a family of three. I had to explain to all of them that I would have an operation to remove a tumour and I might need another one. As things turned out, my cancer had spread and I did need to have another operation. I also had to say that I would need chemotherapy and radiotherapy, and that that was going to take nine months out of our lives—not just mine, but the lives of my immediate family, my wider family and our friends.

I consider myself very lucky that my treatment pathway was relatively clear, but that is not the case for many rare cancers. The reach of cancer is an evil that is growing across our society with nearly one in two of us projected to get cancer in our lifetime, meaning we all know someone close to us, whether family or friend, who will begin what can be a very traumatic journey. It is a fight that causes your life to be taken completely out of your hands, and that leaves families forced to hear rarely used terms like “malignant” or “metastasised” as if they were common expressions, clouding the horror of medical jargon.

It is with these words that I am proud to associate myself with the hon. Member for Edinburgh South West (Dr Arthur), and I congratulate him on his campaign that demands better for cancer patients and especially on bringing forward the Rare Cancers Bill, because it is a powerful and necessary step forward to end the experience that I described at the beginning of my speech.

Rare cancers are often under-researched and the regulatory environment simply fails to cope with them. They have smaller patient populations which makes research and investment less appealing and an evidence base harder to achieve. Where clinical trials are taking place, patients often do not know very much about them. A Cancer52 survey of rare cancer patients found that 65% cited not knowing about trials as the main barrier to accessing the trial in the first place. The Bill seeks to rectify those flaws in our system, and I would like to highlight the powers it contains to ensure that patients can get better access and find relevant clinical trials. As was highlighted in the Teenage Cancer Trust’s “Improving Young People’s Access to Cancer Clinical Trials” report, it is also difficult for the clinical trial leads themselves to find the necessary patients, meaning that they struggle to recruit. Both patients and researchers want to be in those clinical trials, but the system does not allow for that common-sense joining up.

I hope that as a result of the changes made by the Bill, people in my constituency of Wokingham and across England will begin to see a shift towards prioritising rare cancers, because such a shift is long overdue. Last week, I met a constituent to discuss his wife’s cancer. She had leiomyosarcoma, which has an incidence rate of six cases per 1 million people annually in the UK. He explained to me that one of the potential treatment options for his wife is exploiting faults in the BRCA2 genes through PARP inhibitors. However, with an estimated 30 new cases of leiomyosarcoma every year and only three with the BRCA2 mutation, there are too few patients to allow for a sufficient clinical trial, and therefore NICE does not license those drugs for that particular cancer.

What are the Minister’s views on efforts within the European Union’s life science industry to develop clear guidance to make cross-border clinical trials easier? If that were to happen, it would address one of the major problems with rarer cancers such as leiomyosarcoma. Individual nations may not have a sufficient pool of patients to conduct a clinical trial, but multiple nations working together could. Does the Minister see cross-nation trials as having great potential for developments in oncology? If the EU were to advance easier cross-border co-operation, would that be something that the United Kingdom could potentially negotiate its way into? This is no time for a Government to be isolationist.

My constituent also highlighted that PARP inhibitors are available in the United States. What efforts is the Minister making to ask that if drugs are approved by the United States Food and Drug Administration, NICE has the opportunity to take the US evidence into account when considering whether to approve licences for drugs in the UK?

Sarcomas are just one tumour type that has poor survival outcomes and limited treatment options. Despite the investment by charities such as Sarcoma UK to fund research into new treatments, we do not know enough about the disease, because so few people are affected. Other constituents have written in to share their experience of losing loved ones to brain tumours such as glioblastomas and to blood cancers. All have expressed hope that this Bill will create a world in which we can better encourage pharmaceutical companies to run trials on rarer cancers in order to create innovative new treatments, so that the pain they went through will not be a fate that others must endure in future.

Before I conclude, it would be a missed opportunity if I did not ask the Minister about the national cancer strategy, which will be so important in ensuring that a long-term plan is in place to deliver better services for patients with rare and less common cancers. The NHS needs to be prepared for the innovations of the future by preparing for an increase in demand for companion diagnostics. The turnaround times for existing tests are already causing delays in optimal treatments. What steps is the Minister taking to ensure that there is enough capacity for the ever-increasing demand for diagnostic tests?

The national cancer strategy needs to be thoroughly scrutinised before its final draft is published, to ensure that the measures demanded by cancer charities and patient groups, and ideas from by the life sciences sector, are properly covered. NHS performance must be measured regularly over the lifetime of the strategy to see if improvements are actually being made. Will the Minister explain what accountability mechanisms are being considered for the national cancer strategy?

I thank the hon. Member for Edinburgh South West once again for bringing the Bill to the House.