Thursday 7 July 2016
[Mr Charles Walker in the Chair]
I beg to move,
That this House has considered blood cancers and the Cancer Drugs Fund.
It is always a pleasure to come to this Chamber and have the opportunity to expound on the subjects that we bring here for consideration. I am pleased that so many hon. Members have made the effort to attend on a Thursday afternoon—often referred to as the graveyard shift. I am not sure that is entirely accurate or fair, but we thank very much those who have made the effort to be here. It is also a pleasure to see in her place the shadow Minister, the hon. Member for Hackney North and Stoke Newington (Ms Abbott), and I look forward to hearing the Minister. He and I always seem to be in these debates—if he is here I am here, and if I am here so is he—but it is always a pleasure to see him. We look forward to his response to the points that we make during the debate.
Cancer is a massive issue. It will affect one in every two people we meet, and many of us here have a personal interest in the subject. More and more people are surviving cancer because of the incredible work that has been done by the pharmaceutical industry and private enterprise, and also because of the work done in partnership with universities. Queen’s University Belfast is involved in finding new drugs and working with private enterprise, the Government and the education system to find ways of doing more.
The fact that more people are surviving and living longer is to be celebrated, but unfortunately not everyone is living well, which is what this debate is about. That is especially true for people with blood cancers, many of whom will live with the disease and the consequences of its treatment for many years. Some of them are fortunate to do so, but for many that will be time limited. About one in four people living with or beyond cancer face disability or poor health following their treatment. Evidence from Macmillan shows that by 2020 nearly one in every two people will receive a cancer diagnosis in their lifetime. Just look round this Chamber: half the people here today will receive a cancer diagnosis at some time during their life; or, if they are not affected directly, their families certainly will be.
I place on the record my thanks to the cancer charities, Marie Curie Cancer Care, Macmillan Cancer Support and the many others, which do such marvellous work with those who have cancer. Right now, routine follow-up care for people with cancer costs about £250 million a year. It is usually delivered via a one-size-fits-all medical model that is based on repeat out-patient consultations despite a lack of evidence to show that that is effective, so we must also look at that.
I was therefore pleased to see the commissioning guidance released recently to promote the roll-out of a recovery package for everyone with a cancer diagnosis. The recovery package will be especially important for patients with blood cancers, because it will mean that they get the physical, emotional and social support they need to lead as healthy and active a life as possible for as long as possible. Every one of us in this Chamber would wish that to happen. Many people with blood cancers live for a number of years with the consequences of their disease and treatment, so there needs to be a commitment from the Department of Health that everyone with a blood cancer will be offered tailored support.
Let me talk from a personal point of view. My father had cancer on three occasions. He passed away last year. He did not die because of cancer, but he was diagnosed 39 years ago—38 years before he passed away—and my mother was told to go home and prepare and get the estate sorted out. In other words, there was next to no hope, but my dad survived, and he survived for three reasons. He survived, first, because of his faith and the prayers of God’s people; secondly, because of the skill of the surgeon’s knife; and thirdly, because of the care of the nurses. Those three things are vital for all of us. That is an example of how far we have come in those 39 years.
Patients with blood cancers can face significant problems in accessing vital treatment because of the difficulties and complexities of appraising medicines in this area. I thank the charities and others who have given us background information. I will not do this of course, but I could probably speak for three hours on this subject. I am sure that people are thinking, “Well, I hope he doesn’t.” I am not going to, because clearly I want to give everyone an opportunity to participate in the debate.
The appraisal system used by the National Institute for Health and Care Excellence is not suitable for assessing medicines that treat conditions with small patient populations—in other words, cancers that affect a small number of people. Perhaps in the greater scheme of things, they are numerically small, but it is vital that the drugs are available and in place.
At this point, I pay special tribute to the hon. Member for Crawley (Henry Smith), the chair of the newly brought together all-party group. I thank him for going with me to the Backbench Business Committee to ask for this debate. We are both pleased to be able to have the debate so early after the launch of the APPG. The hon. Gentleman will speak himself, but it is a pleasure to work alongside him.
I congratulate the hon. Gentleman on securing this very important debate. The issue of small populations and finding the right treatments is crucial as the cancer drugs fund goes forward within the NICE context. That is an opportunity as well as a threat. I hope that the hon. Gentleman will reflect that in the rest of his speech.
It is always a pleasure to have the hon. Gentleman come along to a debate in support. He always does so, and his valuable contributions are always appreciated by us all. I wholeheartedly agree with him.
The way the system fails blood cancer patients can be illustrated via the case of ponatinib, a drug designed to treat chronic myeloid leukaemia patients who are resistant to or intolerant of other treatments. I will elaborate on this point later, for it is very important. I think that the hon. Gentleman has grasped that it is a vital issue as well. The drug is fully available to all CML patients in Scotland and Wales, but in the remainder of the United Kingdom it is provided on the NHS only to a small subset of patients who can benefit from it after NICE refused to appraise it because of the small patient population. One of the questions that we would like answered in this debate if possible—I am not sure whether the Minister is the right person to answer it, but I know that if he is not, he will certainly direct it to the right Department—is how we ensure that there is not a postcode lottery when it comes to the allocation and availability of cancer drugs.
I thank the hon. Gentleman for securing the debate. Does he agree that parents—in my case, the parents of nine-year-old Charlie Fearns—are confused, distressed and dismayed that they are not provided with the medical intervention that they need to treat their child’s illness? Charlie needs chimeric antigen receptor T-cell therapy, but Mr and Mrs Fearns are having to find as much as £150,000-plus to fund the therapy themselves. Does the hon. Gentleman agree with me that that extra burden, in their circumstances, is far too onerous?
I thank the hon. Gentleman for his intervention and for that personal story. I think that that situation is a disgrace. Any of us in the House would wholeheartedly agree with him. There has to be a system that enables all the people of the United Kingdom of Great Britain and Northern Ireland to partake of, use and access these drugs. The example he gives shows just where the current system falls short. This debate gives us an opportunity to highlight that and to seek the solutions that he and his constituents want.
The situation with ponatinib has resulted in the equivalent of a postcode lottery in patient access across the UK, with some patients having to move to Scotland or Wales to undergo treatment. Why should they have to move? It is not fair that they should. It seems grossly unfair that they should have to either move or travel to the hospital. For these patients, the drug could be an alternative treatment to a stem cell transplant, and a last chance of survival.
The systems of appraisal used to assess blood cancer medicines need to be able to take into account the small patient numbers and the issues that that raises about the amount and maturity of data available, to ensure that all patients who need access to medicines do not miss out because of where they live.
Chronic lymphocytic leukaemia is the most common type of leukaemia, a cancer of the white blood cells. In leukaemia stem cells start to overproduce white blood cells that are not fully developed; in CLL, these are called lymphocytes. Figures from Macmillan and NICE estimate that some 2,700 to 3,200 people in the UK are diagnosed with CLL each year, with most cases occurring in people over 60 and very few in people under 40. Around two thirds of the diagnoses are made by chance through a routine blood test with doctors; people do not know they have it and all of a sudden they find out they do. The other third of diagnoses are made following visits to the doctor for CLL-related symptoms: enlargement of the lymph nodes, liver or spleen, anaemia, bruising or fever, drenching night sweats and/or weight loss of greater than 10%. Someone with any of those symptoms should see their doctor, and do so soon.
CLL is more prevalent in men, with recent studies showing that some of the risk of developing it is inherited from parents. One in 20 CLL patients has a relative with CLL or a very similar condition; however, CLL can and does affect anyone.
I commend my hon. Friend for raising this issue today. In Northern Ireland three people every day are diagnosed with blood cancer. I am sure he would agree with commending the work of Leukaemia & Lymphoma NI, the only charity in Northern Ireland dedicated to dealing with this, and the great support it gives to the Centre for Cancer Research and Cell Biology at Queen’s University, which he has already mentioned. Without the dedicated work of people in charities like that across the country, raising money for absolutely vital research, we would be in a much poorer place indeed.
I am indebted to my right hon. Friend and colleague for that intervention. We have done, and we continue to do, many great things in Northern Ireland in medical research, charitable giving and charitable operations. He has rightly highlighted an organisation in Northern Ireland that does just that. It is worrying that we have so many people with blood cancer. When we take that as a proportion of a nation of 1.8 million, it gives an idea of just how important it is.
CLL tends to develop very slowly with many people not requiring treatment for months or even years, although others need it straight away. For all stages of CLL, more than 40%, of men and more than 50% of women will survive for five years or more after being diagnosed. At stage A, which is the earliest, people survive on average for 10 years or more after diagnosis, those at stage B for five to eight years, and those diagnosed at stage C live for up to three years. From those figures, life expectancy is very clear: people have a diminished lifespan.
Doctors often recommend against immediate treatment for CLL if it is diagnosed at an early stage and opt to watch and wait. I am concerned that sometimes they need to be more proactive and receptive to what the issues are at the time. “Watch and wait” can be stressful for those diagnosed and their families, but early treatment can lead to exposure to the side effects of drugs without achieving significant benefits, as well as to increased life insurance premiums. Sometimes we have to look at the other things that affect us when our health declines, such as work and financial obligations, or how to feed our family. That adds to the stress.
Patients whose CLL relapses early have a more aggressive form of the disease and it is essential that clinicians have a range of treatment options available to suit individual patient need. That is due to factors such as the variable course and nature of the disease, the toxicity profile of the therapies and the comorbidities, which are more prevalent in this situation. There is a general poor understanding of the need for a variety of treatment options. Again, knowledge of the blood cancers among GPs, the NHS, consultants—those who should know—perhaps needs to be improved as well.
Stakeholders including the CLL Support Association, which has done great work collecting much of this information, have two key areas in which they have workable recommendations to make a difference. For post-diagnosis support the CLLSA believes that because CLL behaves in such a diverse way, it is important that patients and their families are provided with accurate information from trusted sources. Each hospital should have a CLL nurse who can provide patients with useful written information that contains links to websites for those who wish to know more.
Let us be honest: people who get this diagnosis want to know as much about the disease and the problems that they have right away; they want to have that knowledge and information right there. As the hon. Member for Bootle (Peter Dowd) said, citing the personal experience of his constituents, they want to know what it means, how to react, what the survival chances are and how long. All those things play upon the mind; they are very important issues.
When it comes to access to new treatments, a second preliminary decision from NICE in June 2016 has provisionally rejected ibrutinib for NICE guidance to treat relapsed refractory and 17p deletion or TP53 mutated CLL. That group of patients have a poor prognosis and very few options available to them. The manufacturer has been requested to submit a proposal for consideration of CDF listing for access to treat adults for the 17p deletion or TP53 mutation only. Again, that is something that perhaps the Minister can reply to. When people see that they can access new treatments, which really could be life-saving, they want to have them right away and want to try them. In many cases, people probably would not mind piloting those things, just to make sure that they can have life expectancy on the timescale they have been given.
The CLLSA feels that ibrutinib should be made available to both groups because both populations share a number of similarities in patient need, including a significant symptom burden, limited alternative treatment options, and subsequently poor survival prospects. As both groups have a similar symptom burden, it is unfair that they will be unable to benefit from access to this treatment. There are also the quality of life benefits. CLLSA argues that the quality of life benefits reported by patients have not been adequately considered by NICE. As such, the cost-effectiveness of ibrutinib is likely to have been underestimated. Many of us believe—in the background information—that it certainly is a drug that could do more if there was the opportunity. We need to make sure that it can be made available and accessible.
Furthermore it should be noted that CLL is a heterogeneous disease, so there is a need for multiple options in every situation. I know that each person’s individual circumstances are different and the GP and consultant who look at that will decide the way forward. Some patients may not respond to, be unable to tolerate or be otherwise unsuitable for alternative treatments such as idelalisib. As such, there is a clear need for access to ibrutinib to enable patient and clinician choice, so that treatment can be tailored to patients’ individual clinical needs. Ultimately the decision will remain a matter for NICE, but this is what the key stakeholder in CLL believes to be the way forward. That is an organisation that has been run by trustees who are all volunteers and either suffer from CLL, are clinicians or are relatives of those with CLL. They do their research, not for glory or riches, but for what is best for those affected.
Some of the background information we had relates to brentuximab—I hope my pronunciation is right. That is hailed as one of the most effective single agents for relapsed anaplastic lymphoma—or Hodgkin’s lymphoma as it is better known. It was delisted after two of its indicators were removed, making it harder for some patients to receive the medicine they need. In November 2015, the Blood Cancers Alliance met the Secretary of State for Health and in a letter to the Prime Minister expressed its concern over the delisting of life-saving drugs from the CDF. There is a drug that was delisted and that seemed to be doing the job; it is concerning that it has been removed when it quite clearly could have made a difference.
It was greatly encouraging to have so many stakeholders engage on this issue and time will not permit me to pay tribute to all of them. Another organization working in the field is Celgene, which has provided some further information that will add to the debate. Five conditions account for almost 70% of the total lives lost to blood cancer: myeloma, diffuse large B-cell lymphoma, acute myeloid leukaemia, myelodysplastic syndromes and the aforementioned chronic lymphocytic leukaemia. New treatments have transformed survival rates for multiple myeloma since the 1970s and there have been great steps forward. I know that when the Minister responds he will tell us some of the good things that have happened, but average life expectancy for a patient diagnosed with multiple myeloma is still only five years. This debate gives us the chance to discuss the issue and get some direction and focus from the Minister on how we move forward and achieve a better, longer life for those with blood cancers.
Continued progress is only possible with continued research and investment. That is critical to achieving progress in the treatment of blood cancers. We have had many debates in Westminster Hall on rare diseases because we acknowledge the need to focus on rare diseases, and today’s debate is an example of that. The numbers of people who fall into the category of having rare diseases are small, but we must not ignore the burden of their despair and what that means.
Many of the molecules in other companies’ pipelines are being studied in combination with Celgene’s treatments. Ceasing access to those treatments will seriously hinder progress in increasing survival rates and limit future innovation. I know that the Minister, like everyone in this Chamber today, is totally committed to finding new drugs that can cure these life-threatening diseases, as I am sure he will make clear in his response. The point is that a balance needs to be struck between regulation protecting people and allowing innovation.
In conclusion, I am pleased to have the opportunity to express in this Chamber my concern on behalf of those with blood cancers. I thank all hon. Members who have come to participate. Our responsibility as elected representatives is to put the case on behalf of our constituents. I believe we have the opportunity to make a difference for those who many years ago would not have a long life, but who today could have a longer life if they had access to the cancer drugs fund. What we have in the United Kingdom of Great Britain and Northern Ireland is people with fantastic brains who have the ability to come up with new medications and who can make these things happen. I look forward very much to the Minister’s response.
It is a pleasure to serve under your chairmanship, Mr Walker. I feel I should start by making a confession: I am probably one of the few Members of Parliament who can look down a microscope at a blood sample and identify a blood cancer, whether it is a chronic or acute leukaemia, lymphoma or a myeloma. I began my working life as a biomedical scientist in haematology. All the hon. Members present will be relieved to know that the majority of blood samples we look at in a haematology lab are normal. However, it is that rare, abnormal blood sample with odd-looking white cells that has long-lasting and life-changing consequences for patients.
As we heard from the hon. Member for Strangford (Jim Shannon), blood cancers account for one in 10 of all cancers, so they are quite prevalent. So often the patient finds it hard to grasp that they have such a serious condition. Patients diagnosed with lung cancer, breast cancer or colon cancer, for example, understand the word “cancer”. But leukaemia, whether chronic, acute, myeloid or lymphoid, does not have the word “cancer” attached to it, so the move towards calling these conditions “blood cancers” may help patients and their families to come to terms with the diagnosis and focus on the need for more research and development and funding for new drugs and treatment therapies.
Stem cell transplantation is one treatment that I want to talk more about today. Just last week I visited the Anthony Nolan research labs in north London—it seemed quite strange putting on a lab coat again after so many years. Obviously technology has changed since I was in the labs, but it was still amazing to see the world-leading equipment and ground-breaking technology and all the scientific research going on behind all the new technologies being developed. The treatment being carried out there is really cutting-edge. I make no apology for using those descriptive words: we really have a gem on our doorstep. We need to sing and dance about the Anthony Nolan research labs, and there are so many more research labs throughout the whole of the UK, as well as the charities and authorities that support them.
Stem cell transplantation is a curative therapy for blood cancer. Despite the great progress that has been made in recent years, sadly one in three patients do not survive their first year after a stem cell transplant. Only half survive to five years post-transplantation, despite all the advances that are being made. Stem cell transplantation is a complex and high-risk treatment and there is an urgent need for significant improvements in transplant outcomes.
There is definitely a need for further research into stem cell transplantation to reduce the side effects of treatment and to improve the long-term survival that we really need. I believe that doing more research will lead to cost savings for the NHS, as patients will be less likely to require specialist care following transplant, but there are a number of barriers to this type of research taking place, such as inadequate research infrastructure and inadequate data collection.
Patient outcomes can be significantly improved through more research into this type of technology. I am sure that some of the current barriers to research can be overcome with Government support for improving research infrastructure. As part of that, we need to establish and really put on the map a national stem cells transplantation trials network to bring together all the data from across the country as well as the data coming to Anthony Nolan. Hopefully, that should accelerate the adoption of new treatments in clinical practice and ultimately improve patient outcomes.
Just a couple of years ago, the Anthony Nolan research labs invested in a new technology for advanced tissue typing, known as third generation sequencing—that is where it really went beyond me on my visit there. The technology allows entire genes to be sequenced in one go, and it is faster and more accurate than was previously possible. In turn, it allows for the best possible donor for patients with blood cancer, leading to better outcomes and reducing post-transplant complications such as graft-versus-host disease.
Sadly, not every patient with blood cancer is suitable for a stem cell transplant, and even if they are, a match may not be available. For some patients, a stem cell transplant is the only suitable option, one example being patients with chronic myeloid leukaemia, a condition the hon. Gentleman touched on. Some of these patients are resistant, or develop resistance during treatment, to targeted drugs called tyrosine kinase inhibitors. Resistance to those targeted drugs is a significant problem in up to a third of patients with chronic myeloid leukaemia.
These complexities only add to the need to improve access for patients to the cancer drugs fund. Chronic myeloid leukaemia patients who are resistant to tyrosine kinase inhibitors and are not suitable for stem cell transplant need a number of medicines to be available to them. Those targeted therapies treat small patient groups and as such have been difficult for NICE to evaluate because, again, we do not have the numbers to get the evidence to prove that a drug works.
The therapies have been passed to the cancer drugs fund panel for consideration, but even now access is restricted and they have only been allowed for some patients with specific mutations. As we have heard, that is contrary to decisions in Scotland and Wales. In fact, like the hon. Gentleman, I have heard of a chronic myeloid leukaemia sufferer moving to Wales to be able to access the treatment that provides his only hope of survival for a few more months and years to spend with his family.
By the nature of the condition, blood cancers are diverse, and just a small range of approved cancer drugs or treatments does not provide a solution. It therefore follows that data on the effectiveness of the drug regime on offer are limited. This situation should not prejudice those blood cancer patients whose cancer epidemiology does not permit treatment with NICE-approved drugs.
I want to finish with three asks of the Minister. First, will he support clinical research that will improve outcomes for blood cancer patients and specifically the aim of establishing a clinical trials network for stem cell transplantation? Secondly, will he ensure that the way the cancer drugs fund is administered does not put up even more barriers to blood cancer patients? Thirdly, will he ensure that the final outcomes of the accelerated access review provide a genuine speeding up of access to transformative and innovative drugs, devices and diagnostics, not just for blood cancer patients but for patients with other hard-to-treat conditions?
It is a pleasure as always to serve under your chairmanship, Mr Walker. I should start by saying that I am a joint vice-chair of the new all-party group on blood cancer and a member of the all-party group on stem cell transplantation. I am pleased to have the opportunity to speak in this important debate on blood cancer and the cancer drugs fund. I thank the hon. Members for Strangford (Jim Shannon) and for Crawley (Henry Smith) for affording me this opportunity by securing the debate. I also thank the previous speaker, the hon. Member for Erewash (Maggie Throup). I agree with much of what she said, including about the need for more clinical research.
It is true that since its introduction in 2010, the cancer drugs fund has enabled many blood cancer patients in England to access treatments that are unavailable in the mainstream NHS. That has undoubtedly benefited and saved the lives of thousands of patients. However, it is equally true that, latterly, the CDF has also fostered a great deal of uncertainty for many blood cancer patients and their families.
Some have experienced a rollercoaster of emotions as the life-saving treatments they rely on have been made unavailable, then available and then unavailable again in a matter of a few months. That was most acute during the 2015 delisting process, which resulted in 16 indications for seven blood cancer drugs being removed from the CDF. There is considerable concern that under the new system more and more blood cancer drugs will become unavailable as the CDF moves away from being the safety net for patients that it was designed to be. That concern is reinforced by the retention of the flawed process used by NICE for assessing drugs, which has resulted in many blood cancer drugs becoming unavailable. I hope the Minister will offer assurances that blood cancer patients will be able to access the drugs they need under the new process for reviewing and appraising medicines.
We must not forget that the drugs offered through the CDF are just one of many treatment options available for patients with blood cancer. I want to turn briefly to one of those: stem cell transplantation. I intend to make a few points about the inconsistencies in care for blood cancer patients post-transplant. I declare an interest, as my husband Ian was diagnosed with acute myeloid leukaemia in 2014 and received a stem cell transplant soon after in the same year through Anthony Nolan. I have been to its research labs, where his DNA is stored—he got a 10:10 match, so we were hugely excited about that. I was with Ian when he was told he had a life-threatening disease and also when he was told that he had been cured. I therefore know a bit about despair and hope and inconsistency. I travelled with him throughout the journey. Although he is cured, it is a journey that is not entirely over, but the light of hope now outshines the darkness of despair in his case.
If we are to make use of the cutting-edge research that allowed his cure, we surely need to look at the inconsistencies of post-transplant care. It is vital that blood cancer patients who undergo stem cell transplants have access to the care and support they need after their transplants, as well as before and during. Currently, however, there is no long-term patient pathway and as such the provision of services varies greatly across the country, leaving vulnerable patients at the mercy of the postcode lottery, where some get very good support but others get very little.
The problem arises because the transplant period is defined as 30 days before transplant until just 100 days post-transplant. Variations in care and support occur after that period when commissioning responsibility transfers from NHS England to clinical commissioning groups. After that point there are no guidelines on what constitutes a suitable late effects service for patients and no guarantees of appropriate funding for transplant centres to deliver the care that stem cell recipients will continue to require. As such, the result is geographical variations.
Delivering the long-term care that patients need at a consistent standard across the country requires a clear and fully funded patient pathway. It is my belief, and that of Anthony Nolan, the blood cancer charity, that that pathway should cater for each patient for at least five years after transplant and look much further beyond the arbitrary 100-day figure. I hope the Minister will touch on what can be done to ensure that every patient has access to the same standard of care and support. Will he agree to meet with representatives of Anthony Nolan to discuss how best to deliver a comprehensive post-transplant pathway?
Just as consistency around post-transplant care is essential, so too is the need for consistency in the NHS’s policy on second transplants for blood cancer patients. This is not a plea—I hope my husband will not need a second transplant: he is currently well, but living with the after-effects of the drugs needed to see him through this period—but unfortunately NHS England currently has no clear or consistent policy on whether it will fund second stem cell transplants for the small number of patients each year who relapse, even though there are many people alive today because of a second transplant.
Will the Minister offer his assurances that if a patient’s doctor recommends a second transplant, NHS funding will be allocated to ensure that that patient has a second chance of a cure? After all, is that not why we are here today: to ensure that all blood cancer patients have access to the best treatments available for their condition—treatments that offer the best chance of a cure—whether it be a stem cell transplant, a course of radiotherapy or chemotherapy or access to medicines approved by NICE or those available through the CDF?
It is a great pleasure to serve under your chairmanship once again, Mr Walker. I pay tribute to hon. Members who have joined me on the new all-party group on blood cancer and particularly the hon. Member for Strangford (Jim Shannon) for going to the Backbench Business Committee and asking for this debate—my appreciation therefore also goes to the Backbench Business Committee for allocating time today to discuss this important issue. The hon. Gentleman is an assiduous parliamentarian and we are grateful to have his wise words and commitment behind this important issue.
Many of my constituents have seen first hand, through family and friends, the real-life effects of blood cancer. We heard a powerful and personal presentation from the hon. Member for Coventry North East (Colleen Fletcher) just a few moments ago. For my part, almost exactly four years ago this month my mother passed away from acute myeloid leukaemia. There will also be personal stories in the Public Gallery and beyond, so it is important to ensure that this issue is highlighted.
This morning I was pleased to see that the National Institute for Health and Care Excellence approved the chronic myeloid leukaemia drug bosutinib. That is great news for patients. I hope that will not be the last such approval in the weeks and months to come. The importance of early diagnosis cannot be overestimated, not least because, by 2020, almost half the UK population will receive a cancer diagnosis during their lifetime. Although I am sure that everyone in this place is aware, it may come as a surprise to those who are not so familiar with the issue that blood cancer is the third biggest cancer killer and is made up of more than 130 different diseases, including leukaemia, lymphoma and myeloma.
It is important not to lose sight of the importance of ensuring emotional support. The management of the cancer drugs fund’s list of medicines in 2015 caused additional emotional strain to some patients, their families and their support networks. Several treatments were not approved by NICE and so were unavailable to patients, and some treatments were made available through the cancer drugs fund. However, 16 of the drugs that received indications were then delisted during 2015, and two delisted medicines were reinstated on to the CDF in October 2015 after NHS England and the drug manufacturers agreed a new price.
All treatments currently on the CDF, and those that have been delisted, will be reviewed by NICE in the coming months as part of the new system for appraising cancer drugs, which could mean that the status of those drugs changes once again, causing additional uncertainty. Such change is of course welcome if the drugs end up becoming available, but the lack of permanency in such decisions is distressing for patients and those who care for them.
For those on a first-line treatment, not knowing whether the second or third-line options will be available—or, worse, knowing that they will not be available—places them and their family members in an almost unthinkable and unbearable situation. Although the revised cancer drugs fund provides up to two years of interim funding for a drug, the concern is whether that is enough time to secure the necessary data needed to make a final decision.
In helping to form the new APPG, I have been made aware of a number of concerns about the new cancer drugs fund system. First, the changes in the new incarnation of the CDF have led to confusion among patients. The old system provided a safety net for patients if a drug was delisted by NICE, but under the new system a negative verdict from NICE means that there is no remaining safety net and the drug will be unavailable to patients, which is a significant cause of concern. Secondly, the fund previously allowed a number of drugs to be provided to NHS patients that otherwise would not have been provided. Many of the CDF drugs had previously been turned down by NICE for being too expensive, because of insufficient data due to the smallness of the patient populations they targeted or because low patient numbers made it impossible for cost-effectiveness to be assessed using NICE’s standard methodology.
Thirdly, treatments currently on the CDF, and those that were previously included but subsequently delisted, will all be reviewed by NICE under the new system. As I have mentioned, such instability also causes suffering. Where patient populations are small, it can be difficult to secure the necessary data to make a successful application to NICE. Fourthly, the success or failure of the new process will depend on how NICE interacts with the pharmaceutical industry. Both sides have a crucial part to play, and flexibility is required on issues such as pricing, access schemes, the application of methodology and how clinical data are used.
Finally, the revised CDF will provide a maximum of two years’ interim funding for a drug if NICE deems that further clinical data are required before a final appraisal decision can be made. The new CDF will therefore provide temporary funds while data are collected, whereupon the drug will be approved or declined by NICE. The fund is welcome in principle, but I fear that an additional two years will be insufficient to secure the necessary data to make a final decision, particularly for some of the blood cancer drugs due to be reviewed by NICE.
The UK is a world leader in blood cancer research, which is welcome. As a country, we can be proud of that work, while recognising that there is still much more to do. Work undertaken in this country has improved our understanding of blood cancer and helped to make available a number of life-saving and life-changing treatments, with many more in progress. Blood cancer research in the UK has been at the forefront of advancing precision medicine for patients, from molecular diagnostics to targeted therapies. In launching the APPG, it has been a pleasure to work alongside charities such as Bloodwise. Since its launch in 1960, Bloodwise has spent more than £500 million on blood cancer research. I pay tribute to the work it has done and continues to do.
The UK’s world-leading blood cancer research not only helps those affected by blood cancer but allows a greater understanding of other cancers and has helped to develop new treatments for other diseases. It is vital that patients are able to benefit from that research. What are the Minister’s views on providing a new model for appraising cancer drugs? Along with the work of the Government’s accelerated access review, a long-term and sustainable system will enable patients to benefit from the innovative, life-saving drugs that are being developed.
Last month I received a written answer from the Under-Secretary of State for Health, my hon. Friend the Member for Battersea (Jane Ellison), who has responsibility for public health, in which she referred to the Government’s September 2015 announcement that, by 2020, the approximately 280,000 people diagnosed with cancer each year will benefit from a tailored recovery package. Will the Under-Secretary of State for Life Sciences provide an update on that goal today?
I would be grateful for some reassurance on the following issues. Will the new process for reviewing medicines enable blood cancer patients to access the drugs they need? Will NICE give consideration to rare diseases and to drugs targeted at small patient populations, with clear guidance on how NICE will provide a fair assessment of such drugs? Will NICE, NHS England and the manufacturers be encouraged to work together effectively to ensure that drugs are made available? Will the Government consider the drugs budget in the light of the huge advances in technology and innovation that are leading to the development of many new life-saving drugs?
I am sincerely grateful to hon. and right hon. Friends for their attendance and attention today. With my friends on both sides of the House, I look forward to ensuring that the issue of blood cancers is further advanced and that awareness is increased.
It is a pleasure to serve under your chairmanship, Mr Walker. I thank the hon. Members for Strangford (Jim Shannon) and for Crawley (Henry Smith) for securing this informative and timely debate. Although I might have sleepless nights at the thought that one in two people will receive a cancer diagnosis, I thank them both for driving home that point to the wider populace.
There can be little doubt that a cancer diagnosis is a daunting prospect for those affected and their families, which is why it is vital that we support them throughout their journey from detection through to aftercare. Many heartfelt examples and experiences have been detailed in today’s debate, and it is clear that the support that individuals require can vary greatly. One size does not fit all, so we need a system that considers the problems from all angles. I agree wholeheartedly with the hon. Member for Strangford that everyone should be offered tailored support.
I am grateful to the hon. Member for Erewash (Maggie Throup)—I hope I have pronounced it correctly—for her explanation that we should refer to all the diseases as blood cancers. As a layman, I found it helpful. There are 130 of them, all with complex names, and having done some research for this debate, I found the names confusing. It is a good approach. Her argument about the strong need for more clinical research should be taken on board.
I was grateful to hear from the hon. Member for Coventry North East (Colleen Fletcher) about her personal circumstances. I am glad that her husband has had a positive outcome. The regional variations are somewhat disappointing; a lot more can be done. I thank the hon. Member for Crawley for his submission and for securing this debate. He drove home the fact that blood cancers are the third biggest cancer killer, and spoke about the difficulties caused by small sample sizes in providing adequate data for drug assessments. That is an important point.
In Scotland, of course, health issues are devolved, so unlike many hon. Members here today, I see only a tiny number of such cases in my casework, as they go to MSPs instead. Our experience in Scotland is also a little different. The Scottish Government are implementing a £100 million new cancer plan to improve prevention, early diagnosis and treatment, and have reformed how the Scottish Medicines Consortium assesses drugs in order to give patients better access to treatments that can give them longer and better quality lives.
Basically, we have combined our cancer drugs fund with our rare diseases drugs fund and simply called it the new drugs fund. The amount in the fund has been quadrupled, which is a significant factor. That approach will serve as a blueprint for all cancer services in Scotland, improving the prevention, detection, diagnosis, treatment and aftercare of those affected by the disease.
Other initiatives include a £50 million fund over the next five years to improve radiotherapy equipment and support radiotherapy training, ensuring that everyone who would benefit from it has access to advanced radiotherapy, and £9 million over five years to support access to health and social care services during and after treatment, such as link workers to provide support in the most deprived communities. We will also invest £5 million over the next five years in reducing inequalities in screening. There are many such examples, and we can learn from one another’s good practices in the different parts of the United Kingdom.
In Scotland, the Scottish Medicines Consortium considers drugs as NICE does, including worldwide evidence, and works up each drug in detail. The balance for us seems to be slightly more on effectiveness than on cost, although cost obviously remains a factor in all matters. Our impression is that, for NICE, cost would sometimes be a bigger component. Both organisations consider cost-effectiveness; as we all know, there is not an infinite pot of money.
In conclusion, although no system will ever produce a favourable result for every individual, more can always be done and we can always learn lessons from each other’s systems. In that light, I suggest that Ministers consider giving NICE the power to change its decision-making process and consider new medicines more flexibly.
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?
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.
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.
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.
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?
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.
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.
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.
Observant, Minister. [Laughter.]
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.
I call Jim Shannon. You have two minutes to wind up.
It is a privilege to sum up. First, I thank all the right hon. and hon. Members who have made valuable contributions today. In particular, I thank the Minister for his concluding remarks, which gave us lots of hope and comfort for the way forward. I genuinely mean it when I say that we very much appreciate his energy and his commitment to the issues that he is involved with. We know that when he says he will do things he will actually do them, and we very much appreciate that.
I thank all those Members who have made a contribution today. The hon. Members for Scunthorpe (Nic Dakin) and for Bootle (Peter Dowd) and my right hon. Friend the Member for Belfast North (Mr Dodds) told some personal stories to illustrate the issues. In particular, my right hon. Friend referred to the charitable work that is done in England. I think that theme came through in all the contributions that were made today.
The hon. Member for Erewash (Maggie Throup) referred to the stem cell infrastructure that needs to be improved and I thank her for her very helpful contribution. She referred to the suitability of patients for stem cells and drugs, and she also referred—as we all did—to the improvement of NICE, which is very much needed. In addition, she referred to the clinical research that is also needed.
There was a very valuable, detailed and comprehensive contribution from the hon. Member for Coventry North East (Colleen Fletcher). I am so pleased to have listened to the very personal story that she told us, and what a joy it is to know that she can point to the stem cells and to how her husband’s own health has improved, which in turn helps their entire family. I think that each and every one of us here today was particularly touched by that contribution. On behalf of us all, I wish her husband well. It is good to know that the Anthony Nolan trust was very much involved in his treatment, as it is in the treatment of many other people. We thank the trust for its work.
The one key comment by the hon. Lady that I wrote down during the debate was this: “Hope shines out from the darkness”. She also referred to the geographical variations in treatment that exist across the United Kingdom, and to giving a second chance. How true that is.
The hon. Member for Crawley (Henry Smith), who is the chair of the all-party group on blood cancer, also contributed today. First of all, we thank him for his initiative for starting that group. We are very happy to be behind him. He is the general and we are the soldiers; he leads in the direction that we wish to go in. He referred to 130 blood diseases, to the emotional support that is necessary for sufferers, to his concerns over delisting, to the need to improve performance and to how NICE and the pharmaceutical industry can work together, which I mentioned in my introduction, but it is so important it deserves repeating. He also referred to Bloodwise and said that everyone needs access to the drugs that they require now.
The hon. Member for Linlithgow and East Falkirk (Martyn Day) spoke, as he always does; he never misses these debates. He always comes along and makes a very determined and considerable contribution. In many ways Scotland leads the way in what we could do in the rest of the United Kingdom. His contribution outlined what Scotland has done and the regional variations. He made many important points, but one of the ones that I thought was good—the Minister will have noticed this—was on how we can exchange our viewpoints regionally and then use the regional variations to the advantage of us all. In Northern Ireland, we can learn from what they do in Scotland and in England and Wales, and vice versa. That is important.
It is nice to see the shadow Minister in her place. She has certainly grasped her portfolio quickly. She has lots of experience, of course. We thank her for the comments she made. She referred to the evaluation of drug availability, relative costs, the rationale, transparency, the palliative effect and the absolute cost—
Order. The format is for the mover of the debate to have literally two minutes to finish. I know we have got time, but there is normal procedure with this. Will the hon. Gentleman bear that in mind and come to a conclusion?
My apologies, Mr Betts. I did not realise that. I thought I had five minutes, and I presumed that was the case. I will bring my comments to an end.
I thank all those who have taken part. I thank the Minister for his concrete proposals and his response. My concluding point is that a single medicine for a cure takes 12 years, 1,600 scientists and 500,000 lab tests to develop. That is the importance of the work that is done. To put it into perspective, that is what we want to work towards: a cure for cancer. If we can get a cure for cancer, we will make lives better. Let us ensure that everyone in the United Kingdom of Great Britain and Northern Ireland can benefit from that.
Question put and agreed to.
That this House has considered blood cancers and the Cancer Drugs Fund.