Rare Cancers Bill

Stephen Kinnock Excerpts

Friday 11th July 2025 Commons Chamber

[The Minister for Care (Stephen Kinnock)]

I am grateful to my hon. Friend the Member for Edinburgh South West (Dr Arthur) for bringing this Bill before the House, and I congratulate him on getting it to Report. Amendment 1 allows amendment 2 to be inserted into the Bill. Amendment 2 would require the Secretary of State, having carried out the review described in clause 1, to set out a timetable for implementing changes to the law recommended by the review. However, it would not be appropriate to presume the outcome of the review of orphan drug regulations that is outlined in clause 1. Amendment 2 presupposes that the review will recommend changing the law, and that there are changes the Secretary of State would be willing to support, following a legal consultation. That is not considered appropriate at this stage.

Amendment 3 is unnecessarily restrictive, introducing wording that confines the review unnecessarily. We want to ensure that a thorough review is conducted, and my hon. Friend the Minister for Secondary Care will be working with her officials to ensure that that happens. For amendment 4, the three-year timeframe to prepare and publish the review and the necessary resourcing requirements have been discussed with officials in my Department and at the Medicines and Healthcare products Regulatory Agency. I remind Members that the text in the Bill reflects the statutory deadline, but we will endeavour to publish a report ahead of the three-year timeframe, which has been put forward to be consistent with the MHRA’s overall workplan.

On amendment 5, there are different definitions of a rare cancer, and we worked with my hon. Friend the Member for Edinburgh South West to agree the definition in the Bill as a cancer that affects not more than one in 2,000 people in the UK. However, a level of discretion for the Secretary of State is required over what falls within that definition, since the facts underlying and the data on diagnoses are constantly changing. The amendment would make it difficult to implement the clause in practical and operational terms.

Amendment 6 would remove the ability of the Secretary of State to exercise discretion as to how their duty would be discharged. This is not considered appropriate, since it makes the operation of clause 2 less workable in practice, and would lack the Government’s assessment of what in all the circumstances would be the most appropriate manner of implementation. Amendment 7 would introduce a specific timeframe—just six months—to allow the appointment of the specialty lead. Although I agree that we will need to appoint the specialty lead promptly, introducing a statutory timeframe is not considered workable for practical reasons. There could be unforeseen delays; for example, recruitment processes might delay the appointment beyond six months.

On amendment 8, as mentioned previously there are different definitions for a rare cancer. That is because the data on cancer diagnoses is constantly changing, and decisions on whether the criteria for a rare cancer are met will inevitably involve an element of judgment. The amendment would make it difficult to implement the clause in practical and operational terms.

I turn finally to amendment 9. It is essential that information relating to people’s health and care is shared appropriately, lawfully, and in line with their reasonable expectations. Amendment 9 would remove the provision confirming that any sharing of information pursuant to the powers created by the Bill, and under NHS England’s existing powers, must be in accordance with data protection legislation. That includes compliance with key principles such as lawfulness and fairness. That layer of assurance is essential for the protection of patients, and clause 3 is a standard provision that makes that explicit.

For those reasons, I ask the hon. Member for Christchurch (Sir Christopher Chope) to withdraw all nine of his amendments.

[Madam Deputy Speaker (Ms Nusrat Ghani)]

Sir Christopher, is it your pleasure that amendment 1 be withdrawn?

--- Later in debate ---

[Stephen Kinnock]

I again congratulate my hon. Friend the Member for Edinburgh South West (Dr Arthur). It is a huge achievement for a colleague who has only served in this place for just over a year to have got a Bill this far. I thank hon. Members across the House who have spoken in the debate so powerfully and movingly, as well as all those who sat on the Bill Committee. We welcome effective scrutiny from Committees, and we value the vital role that Parliament plays in holding us to account. I pay tribute to the charities that are backing the Bill, many of which we are engaging with on the development of our national cancer plan.

The Government want to go further for everyone diagnosed with a rare cancer, and the Bill will act to incentivise the recruitment to, oversight of and accessibility of rare cancer research, so that NHS patients are at the front of the queue for cutting-edge treatments. We know the benefits of embedding clinical research across the NHS and beyond. It leads to better care for patients and more opportunities for our workforce, and it provides a huge economic benefit for our health and care system.

On 3 July, we published our 10-year health plan, which sets out the vision to distribute power to patients and revitalise our NHS, making it fit for the future. The plan will deliver three shifts in care to ensure that the health service can tackle the problems of today and tomorrow, all of which will be key to tackling cancer. Through the 10-year health plan we will ensure that patients receive the most cutting-edge treatment, and that everyone can search for research studies through the Be Part of Research service on the NHS app.

That is why we welcome the Bill, which is aligned with our commitments. It raises the profile of rare cancer research, ensures our international regulatory competitiveness, and allows rare cancer patients to be contacted as quickly as possible about research opportunities. That innovation will be delivered through Be Part of Research, our flagship research registry delivered through the National Institute for Health and Care Research, which allows people from all walks of life to sign up and get involved in research across the UK. I urge everyone watching this debate, and Members in the Chamber who are interested, to sign up to Be Part of Research, and see what research opportunities are relevant to them.

The Government want to give all rare cancer patients access to clinical trials, and greater choice and control over their healthcare. That is why we are delighted to pledge Government support for the Bill. As we set out in our manifesto, the Government are committed to ensuring that the clinical research ecosystem is more efficient, competitive and accessible, and the provisions in the Bill align with that. We want the UK to lead the world in this space as the prime destination for clinical research.

The Government also want to give patients greater choice and control over their healthcare, and rare cancer patients should have access to vital research if they choose to. Once again, I thank my hon. Friend the Member for Edinburgh South West for presenting the Bill, and those Members who served on the Committee. I pay tribute to all the charities that are backing this important Bill. The Government support the Bill, and I look forward to working with Members across the House to improve outcomes for rare cancer patients across our country.