Blood Cancers

Diane Abbott Excerpts

Thursday 7th July 2016 Westminster Hall

[Ms Diane Abbott (Hackney North and Stoke Newington) (Lab)]

This debate illuminates an extraordinarily difficult subject: the clash between the fact that ultimately there must be constraints on NHS spending, whatever party is in power, and the desperation of cancer patients and their friends and family to obtain any drugs and treatments that will give them a few extra months of life.

The cancer drugs fund was a manifesto commitment by the Conservative party. As such, I venture to suggest, it was partly a political response to a series of terrible stories in the media about NICE—the rationing body—not allowing people access to drugs. However, it was always intended to be time-limited; the Government were clear from the beginning. Sadly, it has been overspent. In 2013-14, NHS England overspent the allocated budget for the fund by 15%, or £31 million, and in 2014-15, it was overspent by 48%, or £136 million. The overspend was partly offset by NHS England underspending against other budgets, but it also meant the deferral of some planned spending on primary care services.

The Government’s response to the fact that the cancer drugs fund was always going to be transitional is to introduce a new model. The cancer drugs fund will become a transitional fund that will only pay for new drugs until NICE carries out a full assessment of whether the drugs should be recommended for routine commissioning. After the assessment, the drug will either be approved by NICE for routine commissioning or removed altogether from the cancer drugs fund. That is clearly a horrifying and shocking reality for cancer patients and their families to face. Labour Members believe that the Government could have done more in setting up a new system.

This situation is serious. At the last count, 5,500 cancer patients and 1,750 blood cancer patients were dependent on some of the drugs that might be struck off. Although they personally will be unaffected, their successors as patients and the health professionals who care for them will be left in limbo. The Government have delisted seven of 14 drugs to treat symptoms of blood cancer, even before the CDF has published its report. The independent accelerated access review is also not complete, and the pharmaceutical price regulation scheme has come in for widespread criticism.

It is not clear—the Minister might be able to shed some light on this—whether there has been any proper evaluation of the efficacy of the existing programmes. Prolonging life and the palliative effects of such drugs are key issues, as well as—this is where I started—the relative costs of the drugs themselves. Any decisions made on the availability of drugs should be rational and transparent, taking those factors into account. Although I await the Minister’s response with interest, the decisions of the CDF under this Government do not appear to meet the criteria of either rationality or transparency.

We must be honest: cancer treatment in this country is poor by international standards. We have some of the worst cancer survival rates of the advanced industrialised countries. Some of our nearest comparators are much poorer countries such as Lithuania and Estonia, which have similar if not better cancer survival rates. NICE comes in for extensive criticism, particularly from pharmaceutical companies, but the truth is that NICE, as an independent regulator that takes decisions on the efficacy and cost-effectiveness of drugs, is a model admired around the world. It is a difficult situation.

We in the Labour party want an investigation of the causes of our low cancer survival rates and a plan for Government. At this time, the whole House is waiting for the Minister to say how the Government balance issues of cost-effectiveness and the need for life-extending and palliative care. Are they satisfied that their model for phasing out the cancer drugs fund and turning it into a transitional arrangement is really the best model? What have they done to alleviate the concerns of cancer patients, their friends and family, and people who speak for the sector?

[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.