Blood Cancers

George Freeman Excerpts

Thursday 7th July 2016 Westminster Hall

[The Parliamentary Under-Secretary of State for Life Sciences (George Freeman)]

It is a great pleasure to serve under your chairmanship, Mr Walker. I thank and congratulate the hon. Member for Strangford (Jim Shannon) and my hon. Friend the Member for Crawley (Henry Smith) on setting up the all-party parliamentary group and initiating this debate. It is another example of Westminster Hall providing an important forum as an adjunct to the main Chamber for hon. Members to raise specialist issues, and I welcome it hugely. I thank Members from all parties who have spoken. Again, it is an example of the House at its best, working together in a non-partisan way on an issue that our constituents want us to see is important.

While I am here, I take the opportunity to welcome the hon. Member for Hackney North and Stoke Newington (Ms Abbott) to her role as shadow Health Secretary. I look forward to working with her here and in the main Chamber.

I pay tribute to Bloodwise and other charities that work in the blood cancer space. Charities are playing an increasingly important role in the sector; the Association of Medical Research Charities recently released figures that show that our charities now invest more than £1.4 billion a year in medical research. That puts them above any of our UK pharma companies. Charities make a major sectoral contribution, not only with their research but by advocating on behalf of their patients, driving care pathway reform and leading and supporting integrated care pathway initiatives with NHS England. I put on record our gratitude to them for that work.

I congratulate Members on setting up the new APPG, which has a really important role to play, working with parliamentarians, Government and everybody involved in the blood cancer community, in ensuring that the voice of blood cancer patients is heard here in Westminster and that policies affecting blood cancer patients, their families and carers are patient-centred and evidence-based.

The word “cancer”, as you know Mr Walker, still strikes fear into people’s hearts up and down the land. The truth is that, through extraordinary biomedical advances and treatment improvements, more than 850,000 people are now living and working with cancer. It has become a treatable condition. Some cancers are now preventable with early screening and intervention—for example, there have been stunning breakthroughs in breast cancer, which now has a full survival rate of more than 95%. But other cancers, particularly some of the rarer cancers, still strike fear into people’s hearts, which is partly why I welcome this debate and the increasing number of debates in Westminster Hall on specialist and rare diseases.

Most Members present will have experienced the diagnosis of a family member or a loved one. We have heard powerful contributions from colleagues about that; I too experienced it when my sadly late mother-in-law was diagnosed with chronic myeloid leukaemia. My wife and our family had to watch the tragedy of a young, wonderful, healthy grandmother leaving us. Members have spoken with great passion about the need for us to do everything we can to speed up research and ensure that those people have not died in vain—that their experience helps others to avoid similar suffering. That is why the availability of effective drugs and other cancer treatments is so important to us all and why it drives me in my work as Minister for Life Sciences.

Let me set out how the Department views blood cancers and how they are grouped together, because that shapes our policy on research and treatment. Haematological or blood cancer is a term used to describe a range of cancers that affect the blood, bone marrow, lymph or lymphatic system. The symptoms can be quite vague and many of them, such as tiredness, fever, lumps or an infection, are similar to those for colds or other much less serious illnesses. I repeat the exhortations of other hon. Members: if in doubt, go and see a doctor early for a check-up.

The charity Bloodwise estimates that around 230,000 people are now living with blood cancer in the UK. It is the fifth most common cancer in UK adults and the most common in children and young adults. It is the third biggest killer.

There are three main kinds of blood cancer. The first is leukaemias, which affect the white blood cells that are so vital to our immune system—the police of our blood system, if you like. Leukaemias include four main types: acute myeloid leukaemia, acute lymphoblastic leukaemia, chronic myeloid leukaemia and chronic lymphocytic leukaemia. The second kind of blood cancer is lymphomas, which affect the lymphatic system—another crucial part of our immune system that helps to protect the body from infection and disease. The two main types are non-Hodgkin lymphoma and Hodgkin lymphoma. The third kind of blood cancer is myelomas, which affect the plasma cells that produce antibodies, which help fight infections.

Across those three core groups, there are more than 130 different blood cancer conditions. Most start in the bone marrow, where blood is made; many different types of blood cells are made in the bone marrow, with the type of blood cancer depending on the type of blood cell that is affected. In most blood cancers, the affected blood cells stop developing in the normal way and become cancerous. The cancerous cells stop the blood doing what it normally does, such as fighting off infections. I am conscious that Members present are probably familiar with this, but many watching may not be, and it is important that people understand what the underlying symptoms and causes of the condition are. Common treatments are chemotherapy, radiotherapy and, in some cases, a stem cell or bone marrow transplant.

Many people throughout the country are working hard to improve cancer diagnosis, treatment and care. In particular, I draw attention to the work of some of the pioneers— Bloodwise, Anthony Nolan and Myeloma UK should all be applauded. The work of those charities is also supported by the UK’s world-class scientific and academic life sciences research community, which is driving forward patient-centred research into blood cancers. Let me highlight a few groundbreaking centres that can give us all a lot of hope.

The Francis Crick Institute here in London—the flagship biomedical centre next to King’s Cross—hosts Dominique Bonnet’s programme. Dominique’s team is studying both normal and leukaemic blood stem cell biology and has published work in developing immunotherapeutic approaches to targeting leukaemia. A number of other groups are studying the development of cancers and identifying opportunities to develop novel therapeutic approaches more broadly.

Blood cancer is a key theme behind the Medical Research Council’s £30 million funding over five years for the molecular haematology unit at the University of Oxford, which I am visiting tomorrow. The unit is building on its programmes to understand the development of the blood system from the embryo through to adulthood and how that can go awry, leading to a variety of haematological malignancies, as well as a number of other disorders.

Similar programmes in understanding the development of the blood system and the pathogenesis of blood cancers are supported by the Wellcome Trust-Medical Research Council Cambridge Stem Cell Institute, now under review at the end of its first five-year review period. The institute originally received an £8 million award over five years from the funders, with a strong push to translate those discoveries into clinical application.

The MRC centre for regenerative medicine hosts a number of programmes to improve understanding of the developmental biology of the haematological system and of stem cell compartments, how stem cells go on to make adult blood components and how that can go wrong and lead to leukaemias.

I make particular mention of the work of Professor Charlie Craddock, director of the blood and marrow transplant unit at University Hospitals Birmingham NHS Foundation Trust, who leads the trials acceleration programme, funded by Bloodwise and supported through the National Institute for Health Research experimental cancer medicine centre funding and its clinical research network.

In the last decade, a wave of new drug and transplant therapies have been developed that offer the prospect of dramatically improving the outcomes for patients with blood cancers. It is important that we get those therapies to patients quickly, not only for the patients’ own benefit but because patients’ response, feedback and data drive intelligent research.

The trials acceleration programme was opened in 2011 specifically to address the vital importance of accelerating patient access to novel therapies in blood cancer. By funding a regulatory hub with the capacity to rapidly work up clinical trials of novel agents, coupled with an integrated network of research nurses at major leukaemia units throughout the UK, it has been possible to develop an internationally competitive portfolio of 17 clinical trials. Experience to date has shown that the trials acceleration programme is able to dramatically shorten the time to trial set-up: it is now routinely less than 12 months, which is a substantial breakthrough from where we were just a few years ago.

Professor Craddock tells me that, in the process, patients have accessed more than £150 million of new, potentially life-saving drugs that they would not otherwise have had access to, and vital new data concerning drug activity have been generated. The trials acceleration programme has proved itself a highly effective model for acceleration of new drug therapies, and it is partly those pioneering projects that have informed my thinking on the accelerated access review, which I will say more about in a moment.

The National Institute for Health Research, which we fund to the tune of £1 billion a year, is investing more than £4 million over five years in blood disorder research at the Oxford Biomedical Research Centre, including research into lymphoma, leukaemia and myeloma. In addition, the Department has allocated £200,000 to NHS Blood and Transplant to explore issues on the establishment of UPTAKE, a new research collaboration platform designed to work closely with the NIHR clinical research network to develop and deliver prospective clinical trials in transplant and cellular immunotherapy.

We are leading in the development of genomics to drive insights into new diagnostic and treatment methodologies. The 100,000 genomes project is assembling one of the world’s largest datasets of genomic and phenotypic data, linking hospital outcome data with genotypic data from patient volunteers to provide what I have referred to elsewhere as the NASA of 21st century personalised biomedicine. The focus is on cancer and rare diseases.

This is a good day to be having this debate because just yesterday Dame Fiona Caldicott reported back to the Secretary of State and me. We had asked for her thoughts on how we get the balance right on data security consent and opt-outs so that we can harness patient and public trust in the use of data in our health service for research.

[Ms Abbott]

I listened with interest to the Minister, citing several organisations that speak up on the issue of blood cancer. I draw his attention to the African-Caribbean Leukaemia Trust, which had done a lot of good work encouraging people from the African-Caribbean community to donate blood—their chances of getting a properly matching blood donor are extremely low. The trust was founded by Beverley De-Gale and Orin Lewis, whose six-year-old son was diagnosed with leukaemia. I would not want the debate to finish without their work being mentioned.

[George Freeman]

The hon. Lady makes an excellent point. I thank her for it and endorse her sentiments. In several research areas important initiatives have been taken by black and minority ethnic and other communities with particular genetic predispositions. It is important that we support those initiatives, which I very much welcome.

The Genomics England programme operates on an explicit volunteer consent model. I want to take this opportunity to reassure the House that our announcement that we are dropping the care.data programme, which most colleagues would admit was not exactly an award-winning exercise in carrying public trust and confidence in data, is by no means, and should not be mistaken for, an abandonment of our commitment to a digital NHS. We are completely committed to making sure that our NHS is fit for purpose in the 21st century, which means that, in order to fulfil the most basic contract with our users, we need to have information for individual care, for system safety and performance and for research.

Raising awareness is the central issue of the motion. I assure Members that raising awareness and improving the early diagnosis of cancer, particularly blood cancers, is a priority for the Government. We absolutely recognise that earlier diagnosis makes it more likely that patients will receive effective treatments. On average, GPs in England see fewer than eight new cancer cases per year, but many more patients present with symptoms that could be cancer. In truth, we are missing huge opportunities to harness our daily diagnostic footprint for better cancer diagnosis.

In order to continue to support GPs to identify patients whose symptoms may indicate cancer and urgently refer them as appropriate, the National Institute for Health and Care Excellence published an updated suspected cancer referral guideline in June 2015, which includes new recommendations for haematological cancers in adults and children and young people. NICE noted that more lives could be saved each year in England if GPs simply followed the new guideline, which encourages GPs to think about cancer sooner and lowers the referral threshold.

Following the publication of the updated guideline, the Royal College of General Practitioners has worked in collaboration with Cancer Research UK on a programme of regional update events for GPs, to promote the new guideline. They have also worked to develop summary referral guidelines for GPs, including by introducing an interactive desk easel for them, to enable them to adopt the guideline. The British Medical Journal has also published summaries. In addition, NHS England’s Accelerate, Co-ordinate, Evaluate—ACE—pilots are exploring new models for delivering a diagnosis more quickly and effectively, including by piloting a multi-disciplinary diagnostic centre, which we hope will be particularly effective for patients with vague or unclear symptoms.

In conjunction with the Department, NHS England and other stakeholders, Public Health England currently runs the Be Clear on Cancer campaigns, which are designed to raise the public’s awareness of specific cancer symptoms and encourage people with those symptoms to go to the doctor at an earlier stage, when cancer is more treatable. Mr Walker, I know that you are a great champion of male health issues and have worked against stigma in health, and it is very often men who are slow to present and who tend to feel the stigma and take the traditional view, saying, “I’ll only go when I have a real problem.” The enlightened fairer sex tends to go to the doctor quicker. It is important that we remind men to be quick to go to the doctor.

[Maggie Throup]

The Minister is right to say that there are some really good promotional campaigns that raise the profile of different healthcare issues. The campaign to detect strokes early on, Act F.A.S.T., was a good one. Some of the other campaigns, such as those to raise awareness about lung and colon cancer, are also really good, but the hidden nature of blood cancers makes things harder. Does the Minister agree that we should try to raise the profile of the symptoms?

[George Freeman]

I completely agree with my hon. Friend. As she has made clear, and as I repeated earlier, it is tricky because the symptoms are not always straightforward or simple. It is often not a lump or something that is easily detectable, and the symptoms can easily be confused with those of other conditions that many of us might all too easily brush off and dismiss as the result of tiredness, fatigue and the general pressures of modern life. It is important that people recognise the symptoms. The all-party group and this debate will help to underline the importance of being aware of the early symptoms.

So far there have been 11 national Be Clear on Cancer campaigns covering seven types of cancer, and a national respiratory symptoms campaign will run from July to October this year to raise awareness of lung disease. I shall obviously ensure that the Under-Secretary of State for Health, my hon. Friend the Member for Battersea (Jane Ellison) is aware of this debate and will make clear to her the cross-party support for greater awareness of blood cancers.

[Jim Shannon]

I am not sure whether this is the Minister’s responsibility, but those of us who have participated in the debate are very aware of the issues relating to the accelerated access review. We are keen to know whether there could be a review of the scheme and of access to drugs. Even if the review were to resolve the many issues surrounding the speed with which new medicines are evaluated by NICE, unless there is meaningful change to the final decision-making process, new medicines will fail to reach patients. I suspect that is the Minister’s responsibility, but he can confirm that. How can we improve the accelerated access review? I know the Minister will have a good answer and I want to give him an opportunity to share it.

[George Freeman]

I am grateful to the hon. Gentleman for reading my mind—not for the first time—because the next paragraph in my speech is about the cancer drugs fund and the accelerated access review. His intervention gives me a moment to highlight some of the important points that colleagues have made. The hon. Gentleman, who is something of a biomedical stalker of mine on these occasions, as he acknowledged—we rarely appear in this House other than together—was right to highlight the great work that Queen’s University Belfast does on blood cancers. He spoke with great passion about his father’s experience.

My hon. Friend the Member for Erewash (Maggie Throup) spoke about her experience as a haematologist in this field and about being involved on the frontline of research. That is another example of the power of having Members with a range of career backgrounds in the House. She brings great expertise to these matters.

The hon. Member for Coventry North East (Colleen Fletcher), who is vice-chair of the all-party group, made some important points about the CDF, to which I will return, and described the experience of her husband Ian. She asked whether I would meet the Anthony Nolan Trust; I will. I have already had several meetings with the trust and will continue to meet it, and when I do, I will pick up on the issues she mentioned relating to post-transplantation care in particular.

My hon. Friend the Member for Crawley spoke powerfully about his mother’s experience and made some really important points, not least about data and the importance of our harnessing it and generating a new model of appraisal. I will pick up on the latter point when I discuss the accelerated access review.

The hon. Member for Linlithgow and East Falkirk (Martyn Day) discussed NICE and how important it is that we tackle the new landscape and make sure we are quicker and better at assessing new medicines. The hon. Member for Hackney North and Stoke Newington raised several important issues in a spirit of cross-party non-partisanship that I hugely welcome and appreciate.

I return to the cancer drugs fund. At the beginning of the previous Parliament, the Government, led by the Prime Minister, made the important commitment that we would put in place a cancer drugs fund to ensure that UK patients got access to the very latest cancer drug treatments. We did that in response to a number of high-profile cases in which NICE, applying its standard, one-size-fits-all quality-adjusted life year, had turned down cancer drugs, and patients were desperate for some hope, wanting the system to be responsive to their needs.

I am proud that we have made a total commitment of more than £1 billion to the cancer drugs fund and that we are continuing to invest each year, with more than £300 million put in this year. However, the system as it was originally set up has not proved to be sustainable, because of the pressure—inevitable pressure, in some ways, given the extraordinary explosion of our medical advances—put on it. If drug companies are turned down by NICE and there is a fund available for a post-NICE approval, the companies simply go to it and it has become over-subscribed.

NHS England has moved in the right direction by taking our funding commitment and repositioning the CDF as an early access and managed-access fund that examines more innovative drugs, ensures that they are provided to patients more quickly and makes sure that the data from that early access is allowed to inform the selection of the drugs that are adopted.

The truth is that breakthroughs in 21st century drug discovery and the rise of better targeted medicines are bringing huge benefits for patients but they also place huge pressure on our traditional models of assessment, adoption and reimbursement. With a rapidly ageing society and an explosion of new treatments, we cannot continue with the old model of one size fits all, with the NHS acting as a late procurer at a retail price of every drug. At the heart of my portfolio is a mission to unleash the power of the NHS as a research partner in bringing new drugs to market and getting a dividend—a discount—in return for that work.

We spend around £14 billion on medicines in the NHS every year and over £5.5 billion of that is spent on cancer drugs. The new generation of cancer therapies are incredibly exciting. The immunotherapies that we are seeing do not just delay death or grant patients a few extra months or years; they are cures for cancer. Those Daily Mail headlines that have been promising cures for cancers for more than 20 years are finally true. We now have cancer cures coming through, which profoundly changes the way that we will have to price drugs.

Let me say something about the accelerated access review, NICE and the CDF. At the heart of the accelerated access review is a commitment from the Government to consider whether and how we can better harness our extraordinary NHS assets as an integrated healthcare system to become a partner in the development of new therapies, so that instead of the industry treating the NHS as an increasingly pressurised retail-based consumer that struggles with this explosion of ever more expensive technology, we become a partner. Then, in return for sharing our clinical assets, for working with charities and the industry around our £1 billion-a-year National Institute for Health Research network, and for our leadership in genomics and informatics, we can pull innovation through more quickly for patients, share a data package and be the first place on Earth that companies want to come to in order to have their innovations assessed.

The accelerated access review has been examining a whole range of complex issues in this field and its report is waiting for a post-referendum slot to be published. I can assure Members that in the time that the review team has been preparing that report for publication, I have not been sitting around waiting for it; along with NHS England, I have been doing the preparatory work to be ready for it. Without in any way wanting to pre-empt the report, let me just share with colleagues some thoughts about where I think there is a huge degree of consensus between the Department of Health and NHS England on how we might be able to make some moves.

There are three key areas. First, in specialist commissioning, which deals with many rare diseases and rare cancers, the drugs are commissioned nationally through the Department of Health and NHS England. We want to see whether we can pull together that commissioning function into a more innovative procurement unit, to pull through and do some more innovative deals with industry in return for discounts—acceleration for discounts.

Secondly, we want to consider the NICE pathways through to NHS England and ask whether we can make it easier for innovators either to go through a series of much clearer NICE pathways or to go straight to NHS England and do pricing, discounting, acceleration and volume deals, as well making sure that we have an transparency and accountability framework so that people can see which parties in the ecosystem are fulfilling their mandate.

[Mr Clive Betts in the Chair]

The evidence from recent NICE approvals is encouraging. Many thousands of people have benefited from blood cancer drugs that NICE has recommended, such as bortezomib, ofatumumab and rituximab, and the evidence is that if we gather the data properly from the drugs that we approve, then we can use that as an intelligent health service to inform which drugs we adopt and pull through more quickly. If we get that right, the CDF in its reformatted position as a managed-access fund operating earlier in the system could become a powerful vehicle for an accelerated-access model of cancer drugs assessment. That will require some careful work on the NICE/NHS England framework, but we are doing that work right now, as we speak.

I will close, Mr Walker, by saying that—ah, Mr Walker has been replaced by you, Mr Betts.

[Mr Clive Betts (in the Chair)]

Observant, Minister. [Laughter.]

[George Freeman]

That was achieved in an extraordinary manoeuvre, which was so seamless I did not even notice it happening over my left shoulder.

This summer, officials in the Department will work with the accelerated access review team and NHS England to try to strike a blow for an integrated healthcare innovation economy that makes best use of our budgets. Let me put it on the record that these are substantial budgets: we have committed an extra £10 billion a year to the NHS in 2020 and at the heart of that package is an extra commitment to new drugs worth £4 billion. Those are substantial sums, but we want to make sure that those funds are spent on getting the right drugs through to the right people quickly, and in return for that acceleration we will be able to get better discounts from the industry. I am confident that by bringing the CDF together with the accelerated access review, we will be able to deal with many of the issues that colleagues have raised this afternoon.

That brings me to the end of my comments. It only remains for me to thank hon. Members for raising these issues. I hope they can rest assured that I am committed to seeing these issues through and working with them in the days, weeks, months and—who knows?—years ahead.

[Mr Clive Betts (in the Chair)]

I call Jim Shannon. You have two minutes to wind up.