Full text of Henry Smith MP's speech in the Westminster Hall debate on Blood cancers and the Cancer Drugs Fund, 7th July 2016.

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.