Rare Cancers: Diagnosis and Treatment

Question

Asked by

To ask His Majesty’s Government what incentives they are creating to encourage pharmaceutical and medical technology industries to innovate in the diagnosis and treatment of rare cancers.

My Lords, improving diagnosis and treatment for rare cancer patients is a priority for this Government through the national cancer plan. The department is exploring procurement mechanisms to stimulate technological breakthroughs to tackle rare cancers with the lowest survival rates. The MHRA launched a public consultation in May seeking views on how rare disease therapies are regulated. The Government will implement the Rare Cancers Act 2026 to ensure that our regulatory framework delivers for rare cancer patients.

I am grateful to the Minister for outlining what are laudable aims, but the reality is that, every year, about 67,000 people die from rare cancers. About 10,500 of those have brain tumours, and, of all those patients, many are children or young people. Some 82% say they were never offered a trial, often because no trial exists that they could even go into, and half of them feel that their diagnosis was late, leaving them to have end-stage cancers. So, first, with the cancer plan, plans for early detection, the trials accelerator and THRIVE, will the Government ensure that all cancers, but particularly rare cancers, have comprehensive genomics testing and that there is tissue freezing as appropriate so there can be targeted drug development by pharmaceutical industries and personalised treatments? Secondly, will the Government strengthen bench to bedside so that there is a stronger clinical academic force, in oncology and in pathology in particular, to shorten set-up times for trials, and will drug and radiotherapy trials have hub and spoke models so that patients living at a distance from a research centre can still benefit from going into a trial, and the bureaucracy will be decreased?

The noble Baroness is quite right to talk about acceleration of clinical trials; as she and your Lordships’ House will be aware, that is exactly what we are doing. Not least, our turbocharging of clinical trials has already meant that set-up now takes an average of 122 days, which is down from 169 days last year and indeed exceeds the Government’s wish, which was 150 days. I share her view on early diagnosis, which, again, is why that is covered in the cancer plan. On genomics, the national cancer plan sets out a major expansion in the use of genomics to do exactly as the noble Baroness says: support earlier diagnosis and more personalised treatment.

My Lords, in January, the Government announced faster access to clinical trials via the NHS app for rare cancers. Is that live yet? If not, by when will patients be able to use this innovation to take part in suitable drug trials? And how will those who are digitally excluded have access?

In all cases in our development of the NHS app, which is the front door to the NHS and has already made tremendous steps forward in terms of access, we already build in provision so that those who for whatever reason are not able to use the app will continue to get personalised support. However, it is true that we will offer those with rare and less common cancers in particular the opportunity to take part in clinical trials through the NHS app, and I will be pleased to keep the noble Baroness informed of the timetable. We want and will get faster access to the most innovative treatments and technologies that are available.

My Lords, the noble Baroness’s attempt to get early treatment is commendable, and we are glad to hear what the Government are saying, but does she agree that one problem is that cancer is really a multimorbidity, so that often a number of different organs will be affected by it? Does she further agree that we might do more to hasten diagnosis for patients who may be suspected of having cancer but it often takes a long time to get those connections to see the oncologist who eventually decides whether to give the very expensive drugs that are needed? Will she ensure as far as she can that speed between services is undertaken?

Indeed, I am pleased to give my noble friend that assurance, which is at the core of the national cancer plan. It is worth saying that many rare and less common cancers, including those that cannot be staged, are diagnosed in emergency settings, which is far from ideal and outcomes are far worse. We have committed, and have a plan, to reduce the number of rare cancers that are diagnosed in emergency settings, but we will also provide improved screening and surveillance and help GPs to spot harder-to-recognise rare cancer cases through AI-driven decision support tools and new approaches. All that will be of great assistance in the way that my noble friend seeks.

My Lords, a number of life sciences companies have warned that the recent HMRC VAT rulings on compassionate use and early access medicine schemes, which can result in companies being charged VAT even where they provide medicines free of charge, could lead to them withdrawing programmes that provide innovative treatments to patients with rare conditions before routine NHS funding is available. Have the Government looked at the impact of charging VAT on drugs that are available for free through the compassionate use and early access schemes? What is the impact of that on their stated ambition to encourage more innovation in diagnosis and treatment of rare conditions?

Such considerations are always made, as the noble Lord is aware, when we make plans in respect of where taxation applies—I know there was an Urgent Question in the House of Commons which the Minister concerned, Karin Smyth, answered. In evaluating all new medicines, including for rare cancers, NICE is able to recommend many new treatments now available to NHS patients that previously were not, but I take the point of the question. I want to emphasise that the cancer drugs fund means that there is funding for promising new cancer drugs and NHS patients can get earlier access to treatments that would not otherwise have been available to them. Through the MHRA, we are also designing a new framework for regulation of rare disease treatments in all these ways. That will certainly support the point the noble Lord rightly made.

My Lords, we lead in genomic science and infrastructure by having established seven hubs for genomic testing. Despite this, we fall behind in testing for liquid biopsies of DNA and for circulating DNA, in histology testing, in molecular testing of cancer tissues and in testing for genetically inherited genes in families. All these are because of bottlenecks—not because the machines cannot do the tests. We need somebody to get a grip of the administrative backlogs that occur because we are failing on timelines for all these, which are government targets. Can the Minister answer on that?

I recognise what the noble Lord says about bottlenecks. That is why the national cancer plan is quite clear about the changes we will see. I should say, to the point in this Question, that there is for the first time specific reference to rare cancers—I always think “rare cancers” is a bit of a misnomer in any case, if one looks at the statistics. The national cancer plan also sets out a major expansion in the use of genomics, and that will support earlier diagnosis and more personalised treatment. That is what we need to see.

My Lords, I thank the noble Baroness, Lady Finlay, for this very important Question and for raising the hub and spoke model for cancer trials. Rare cancer trials involve fewer patients and less data, which makes it very difficult to conduct the large, randomised studies that are needed for NICE approval and to produce evidence for innovative treatments. Are the Government considering asking NICE to review or revise its assessment methods so that innovative treatments can be approved with fewer patients and less data because of the difficulties in doing large trials, so that patients are not left behind?

It is key that we continue our commitment to speeding up research and clinical trials. We have already cut unnecessary bureaucracy, standardised processes and freed up workforce capacity, and we are—as I said earlier—seeking to use the NHS app as a way forward. That is just the beginning of an ambition to accelerate start-up times. We need to strengthen our position as a global force in respect of clinical trials, and the hub and spoke model—which my noble friend and the noble Baroness, Lady Finlay, both spoke to—is a possible way to take that forward.