Rare Cancers Bill

Peter Dowd Excerpts

Friday 14th March 2025 Commons Chamber

[Peter Dowd (Bootle) (Lab)]

I rise to support my hon. Friend the Member for Edinburgh South West (Dr Arthur). I know he has put a huge amount of effort into bringing the Bill before the House, in collaboration with many others, including patients, families, professionals and charities. I send my condolences to him, his wife and family on the death of his father-in-law, and to Tilly’s family. To lose a child is unbearable and against the natural order of things.

The Bill is much needed and I welcome the opportunity to make some observations about it. Before I do so, I refer to my hon. Friend the Member for Calder Valley (Josh Fenton-Glynn) and his brother. I live in the area of Lunt that he referred to, where there is going to be a remarkable legacy for his brother: the area has been rewilded and there will be a forest there in due course, which is absolutely fantastic. I invite him and his family to come down—I will show them around and they can see the legacy that his brother has left us.

I also want to refer to comments made by the chief executive officer of the Brain Tumour Charity, Dr Michele Afif, about the context of the Bill and why it is before the House. In an online article last month, she wrote:

“During my clinical career I was frequently moved by the courage and determination of my patients and their families.”

It behoves all of us to support the endeavours of my hon. Friend the Member for Edinburgh South West to help those people who “don’t have a voice”, as Dr Afif says, by giving our unambiguous backing to what she calls “a Bill of hope.”

We must ensure that that hope is turned into reality: that is the job of every Member in the Chamber. We owe it to those affected by rare cancers to champion their needs, treatment and lives. The proposed legislation would be a starting point—a first base. It will enable and facilitate the promotion of research into rare cancers and better access to clinical trials, as has been said, and initiate a review of marketing authorisations for so-called orphan products, which I will explore in more detail.

It is devastating to have a cancer diagnosis. We all know family members who have been diagnosed with one form or another. The shock and trauma that comes with such news is hard to take in, as the hon. Member for Wokingham (Clive Jones) said. But then to find out subsequently that the spectrum of intervention with medicines or other allied interventions is limited because of the rare nature of a particular cancer surely adds to that distress and worry. As the hon. Member for Esher and Walton (Monica Harding) and my hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh) said, with glioblastoma, questions inevitably sweep through the minds of those affected as to whether an appropriate medicinal intervention is available or even on the horizon.

Orphan products are those drugs that are used to treat not only rare cancers but other rare diseases. The pharmaceutical industry is reluctant to develop the drugs because of the cost, time and effort when they will not be commercially productive, given the number of people who will use them. The fact that these potentially lifesaving, or life-changing, drugs are not produced leaves a significant lacuna in the treatment options for those with rare cancers. Although there is a public health need—of that there is absolutely no doubt—there is no resource to enable that lacuna to be filled. That resource should be made available.

I am therefore pleased that clause 1 of the Bill will place a duty on the Secretary of State for Health and Social Care to undertake a review of the law relating to marketing authorisations for potential orphan medicines. I note that the Bill will require an assessment of regulatory approaches in other countries, which is also welcome. That is an excellent and much-needed step in the right direction, linked in with the other requirements in the Bill relating to research programmes and initiatives. It sends a clear and unambiguous message to those affected and those who will be affected—that could be anybody in this Chamber and, as we have heard, it is some people in this Chamber—that the Government have heard what they have said and are not only listening to that message and that plea, but are taking practical action to put it into effect, which is more than welcome.

Other countries have introduced similar legislation in this respect. The provision in clause 1(2) will help to form a more progressive, informed approach and its requirements will enable information, practices and protocols from other jurisdictions to be harvested. For example, Genetic Alliance UK points out that there are as many as 7,000 rare diseases—possibly more—affecting one in 17 people, with approved treatments available for only one in 20 rare diseases more generally. Although those are not significant cohorts of people per se in a particular disease category, collectively millions of people are affected in one fashion or another by a rare disease, including rare cancers—and it is no less the case for rare cancers: a disease is a disease, and those affected by it, whether it is rare or not, are entitled to equity of care and intervention.

In this case, such potential interventions cannot simply be left to market arrangements. That is why it is important to facilitate a more comprehensive approach to the development of orphan medicines, which must be set against the context of, for example, a 2022 survey of 61 orphan medicines that received EU approvals between 2018 and 2021. Of those, 36 orphan medicines were made available in England, compared with 55 in Germany, 50 in Italy, 48 in France and 31 in Spain. While those medicines do not specifically relate to cancer, that helps to contextualise the difference in numbers for orphan medicines.

A research programme between 2020 and 2025 at the University of Sheffield, funded by the Wellcome Trust, indicated:

“Furthermore, only a third of EU authorised orphan drugs are recommended by NICE… Thus, the medical needs of UK rare disease patients are potentially underserved compared to both the USA and EU.”

Indeed, the programme is called the Orphanisation project. Clearly, as the university puts it, there is a

“major international debate…currently ongoing about how we might improve patients’ access to orphan drugs, raising important questions about how to value these medicines, and the ethics of resource allocation”.

The project sets out a path for being creative in progressing the relatively new concept of orphanisation,

“as a way of understanding contemporary changes in the biopharmaceutical sector. Specifically, the project examines the extent to which orphanisation occurring in the EU, UK, and USA”,

and seeks to understand how it is informed by

“different technologies, institutions, and actors, addressing the implications for industry, health policy and patients”.

I look forward to the progress that it will make. I believe that the proposals in the Bill will help. They follow through systemically and consistently to change that scenario for the better. International explorations and comparisons are one method to inform decision makers about how they can be more proactive in facilitating access to medicines for those most in need of them, especially when the size and extent of the available medicinal range is limited. That is often the case with the rare cancers we are talking about, and rare diseases more generally.

Once again, I thank my hon. Friend the Member for Edinburgh South West for enabling the House to debate this issue and for the opportunity to tease out many of the issues affecting our constituents and, as I referred to earlier, to discuss crucial lifesaving and life-enhancing treatments for diseases more generally.

I again pay tribute to all those colleagues who have brought their stories and their experiences to us today, including my hon. Friends the Members for Calder Valley and for Mitcham and Morden, the hon. Members for Wokingham and for Witney (Charlie Maynard) and others. They deserve our admiration and thanks, but more importantly, they need our support to get the job done. That point has been made by so many. Such expositions, however painful for the Members concerned, bring home the real need for this House to act on this issue, which is literally a matter of life and death. Finally, I look forward to seeing the Bill progress through the House in the coming weeks, as no doubt do many others. I thank you, Madam Deputy Speaker, for your indulgence.