Rare Cancers Bill

Euan Stainbank Excerpts

Friday 14th March 2025 Commons Chamber

[Euan Stainbank (Falkirk) (Lab)]

I thank my hon. Friend the Member for Edinburgh South West (Dr Arthur) for introducing the Bill. It may be the most repeated phrase in the Chamber, but politics is about choices and he, having ranked so highly in the private Member’s Bill ballot—an early accolade in this Parliament—chose a Bill that would put patients suffering from a rare cancer and their families higher up on the list of priorities. As my hon. Friend the Member for Calder Valley (Josh Fenton-Glynn) so movingly put it, I hope that, in time, the Bill will mean that in some instances, my constituents in Falkirk and families across the United Kingdom will get precious extra hours, days, weeks and years to spend with our loved ones.

Every Member of the House and every constituent I have spoken to about this has a story of a loved one who has suffered through the heartbreaking cruelty of a cancer diagnosis. I lost two of my grandparents in their early 60s. I still remember the seven years of my life that I spent with my grandad Robin. We found plenty of time to exchange robust views on football, and I am sure that if he had more time with us, we would today be exchanging views on life and politics, too. He was lucky, though, to meet all four of his grandchildren, thanks to the immense care he received from his doctors and the support he got from his family.

I remember my granny Janet, who passed away in 2012 after a 10-month battle with a brain tumour. I remember most fondly her fussing over everyone in the house to make sure they had absolutely everything they needed at all times. I remember holding her hand in Strathcarron hospice, where she had volunteered for a number of years, and where she received care in her final days. One thing I have drawn from those experiences is the value of our NHS and hospice staff to those who have cancer and their families. Those staff, day in, day out, take the worst parts of life and allow us to endure them. We should arm them with the best possible tools for treating illness and disease.

Statistically, half of us in the Chamber will have to comprehend our own diagnosis of some type of cancer. The definition of “rare cancer” is, for the purposes of the Bill, one that affects fewer than one in 2,000 people. We must acknowledge that active intervention is required to ensure that research, treatment and clinical pathways for those cancers have parity with other cancer research. As has been mentioned, rare cancers account for about 47% of all cancer diagnoses.

I will go through the Bill and each of its clauses to show why I support it. Clause 1 and the statutory requirement for a review relating to orphan medicines will be an essential step to gaining a comprehensive understanding of the availability of medicines and how they can best be calibrated towards new treatments and new research. The comparative approach that the Bill puts forward for the review acknowledges that while we have a proud history of world-class research, other countries have been able to make substantial strides in this area in recent years when we have not. In the last six years, the UK has dropped from being ranked second for the availability of orphan medicines—behind only Germany—to England being 10th and Scotland being 13th among European countries. That does not necessarily look like regression, but it potentially exposes stagnation in advancing research that would benefit those suffering from a rare cancer. The British pharmaceutical industry has stated that it is increasingly challenging to develop medicine for rare diseases in this country, citing, among other things, the low prospect of NHS reimbursement for rare disease medicines.

Clause 2 gives the Secretary of State a duty to promote research on rare cancers, ensure that patients can be easily contacted about such research, and ensure appropriate oversight of rare cancers. That is a progressive move, as the duty to promote research will write into law that any Health Secretary must take a proactive approach to maintaining and promoting rare cancer research. It embeds in the Government’s job description a duty to ensure that ease of contact is properly facilitated, and that there is appropriate oversight. The Bill is not overreaching when it says that strategic co-ordination is key. The appointment of a national speciality lead for rare cancers will put into law the requirement for a champion who can cut through any silos that exist, or that start to develop as the Bill takes effect.

Clause 3 is a critical part of the framework. It will aid the building of a robust evidential basis for clinical trials by making a bespoke register for those with a rare cancer. The sharing of information from the national disease registration service by the NHS with the NIHR’s “Be Part of Research” registry, so that patients can be identified and contacted, will improve an issue that has come up several times when I have spoken to organisations in this space: there are not enough people available for clinical trials for rare cancers. Correspondingly, as has been mentioned by other Members, clearly there is a substantial barrier at the patient end. Cancer52 found that 82% of those with a rare cancer had not been offered a clinical trial. That evidences the clear case for the change proposed in the Bill.

With rapid advances in cancer treatment, there is a massive opportunity to take steps forward in increasing survivability after diagnosis. For all these new treatments to be effective, there needs to be corresponding clinical trials. Currently, connecting those with a rare cancer to clinical researchers involves an amount of luck that the information about the trial will make its way to the patient or that they will be aware of a clinical trial. Organising the register so that clinical trials can get in touch with patients will simplify and improve the efficiency and efficacy of the system, saving time and increasing the chance of successful trials. I give the Bill my full support.