Alastair Whitington summarises highlights from the Westminster Health Forum conference on cancer care in England
This article is an extended version of the conference report published in the November 2020 print issue of Specialised Medicine.
The Westminster Health Forum conference, Cancer prevention, care and research in England—priorities for diagnostics, local care delivery and accessing innovation, was held online on 25 August 2020.
Professor Peter Clark, National Clinical Lead, Cancer Drugs Fund, NHS England, reported on the progress of the Cancer Drugs Fund (CDF) and next steps for improving access to cancer drugs, which is a significant cost pressure for specialised care. NICE now appraises all cancer drug indications for both common and rarer cancers and, where possible, issues its first recommendation before a drug gets its licence.1
Since 2016, NICE has been able to add to the binary options of ‘yes’ (recommended for availability on the NHS in England) or ‘no’ (not recommended for routine commissioning) a further option as follows: if there are uncertainties as to a drug’s clinical or cost‑effectiveness that may be resolved with continued data collection, a plausible cost‑effectiveness estimate exists, and NHS England is able to negotiate a price in line with NICE cost-effectiveness considerations, then NICE may recommend a drug for use within the CDF.1 Once more information is available, the drug will return to NICE for further consideration for routine commissioning.
Professor Clark felt that one of the challenges for NICE is the uncertainty of estimating the long-term benefit of a drug when the data presented may only have been collected over a period of 16 months. Manufacturers will always present the data likely to get the most favourable outcome based upon patient data from clinical trials. NICE has to use modelling to achieve as realistic an estimate as it can—the collection of data from every patient receiving the drug through the CDF enables a realistic assessment of survival outcomes, and shows how representative clinical trial data are of the real-world patient population.
Professor Clark advised that the CDF has enabled an audit of all cancer drug indications appraised by NICE in the last 5 years. Of 183 cancer indications appraised, only 21 received negative recommendations; in 24 cases, the appraisal had to be terminated on account of non-submission of data by the manufacturer, despite the fact that the drug offered significant clinical value and no other drugs were available in the same class (since Professor Clark gave this talk, these figures have been updated by NICE to 301 indications, 74 negative recommendations, and 39 terminated appraisals).2 Professor Clark said that it is regrettable that NHS England is unable to offer these drugs, which clinicians feel would benefit patients, as a result of companies not applying for their use in England. Aside from this, however, there are very few cancer drugs considered clinically beneficial that are not funded within England. Professor Clark said that, although many clinicians would not have expected CAR-T therapy—which has a list price in excess of £280,000 per treatment—to become available on the NHS, England was the first country to commission the treatment following NICE recommendations on its use for lymphoma and leukaemia.3
Professor Clark felt that the high rate of positive NICE outcomes was the result of England offering one system through which to access a large single market and providing access for drugs while they are undergoing evaluation. The timing of NICE recommendations in line with market authorisation allows companies to gain income quickly (with expected levels of usage usually achieved within 3 months), and positive NICE recommendations are followed by countries worldwide, leading to the rapid adoption of drugs internationally.
Professor Clark asserted that the CDF has been a success: it has given access to 48 cancer drug indications that would otherwise have been unavailable, provided the Systemic Anti-Cancer Therapy dataset to audit CDF drugs, enabled improved dialogue between NHS England, NICE, and industry, and will form the basis of a managed access fund incorporating both cancer and non-cancer drugs.
Finally, Professor Clark outlined the challenges that lie ahead, which include:
- the affordability of high-cost drugs in combination
- the increasing complexity of patient pathways
- integration of genomic data to target treatment
- inclusion of real-world data into the reappraisal of drugs at CDF exit
- termination of appraisals by manufacturers
- the ability of NICE to appraise in timely fashion in light of the large drug pipeline
- the impact of COVID-19 on committee time.
In conclusion, Professor Clark felt that, as a result of NHS England, NICE, and industry working in partnership, the CDF has maintained a high level of evidence-based access to new cancer drugs while managing drug costs in a fiscally constrained NHS.
… the CDF has maintained a high level of evidence‑based access to new cancer drugs while managing drug costs …
Next, challenges related to the treatment of rarer and less survivable cancers were discussed with specific reference to sarcoma and brain tumours.
Richard Davidson, Chief Executive, Sarcoma UK, raised the problem of diagnosing sarcoma. There are 5300 new diagnoses of sarcoma in the UK each year, and sarcoma accounts for 1–2% of all cancers in the UK.4 The disease, which has around 100 subtypes, can affect all age groups and all sites in the body, but limited public awareness means that patients and their GPs are often unaware of the symptoms or fail to recognise them, resulting in late presentation.4,5 Mr Davidson said that misdiagnosis can occur in a number of ways. Firstly, primary healthcare professionals may consider the symptoms to relate to other, more common diseases. Secondly, scans may be misread or specimens may not be reviewed by specialist pathologists. Currently, there are no tests or biomarkers to identify sarcoma before there are any noticeable symptoms.
A survey of 1100 patients with sarcoma undertaken by Sarcoma UK this year showed that 7% of patients waited at least 6 months after their symptoms started before going to see their doctor.6 Sarcoma was not mentioned in the initial appointment for 77% of respondents, and 35% of participants saw a healthcare professional more than three times prior to getting a diagnosis, resulting in 17% of patients waiting more than a year for an accurate diagnosis.6
Mr Davidson believed that current guidelines for the referral of patients with sarcoma should be reviewed with input from specialists, and that adherence to these guidelines should be monitored. Triage pathways and scan reporting should also be standardised, with specialist sarcoma centres overseeing one-stop clinics where possible.
It is a key ambition of the NHS Cancer Plan that 75% of cancers will be diagnosed at stage 1 or 2 by 2028.7 For some patients with sarcoma, the staging data recorded are incomplete,8 and although all suspected cancers should be referred via the urgent 2-week diagnostic pathway, one in three patients with sarcoma wait over 6 months to be diagnosed, with a potential detrimental effect on outcomes.6,9
Dr David Jenkinson, Chief Scientific Officer, The Brain Tumour Charity, echoed concerns about the diagnosis and staging of rarer cancers. These concerns led to the establishment of the Less Survivable Cancers Taskforce in 2017, the aim of which is to highlight the disparity in life expectancy for six cancers (pancreatic, brain, liver, lung, oesophageal, and stomach) compared with other cancers. The chance of a patient with a less survivable cancer surviving for 5 years after diagnosis is less than 30%, and less survivable cancers account for 51% of all cancer deaths.10 In September 2018, the Taskforce set itself the target of doubling the average 5-year survival (14%) for this group of cancers to 28% by 2029.10
Dr Jenkinson explained that staging brain cancer is much more difficult than staging other cancers because there is no metastasis or penetration through a basement membrane, which are key to staging cancer. Patients with brain tumours often don’t report symptoms but rather changes that they are experiencing, which may be very slight and develop over time.11 The messaging around GP visits of ‘one visit, one problem’ can be a barrier to identifying tumours, because their diffuse symptoms may not be immediately recognised, which can lead to a delay in diagnosis.11 Over 50% of brain tumours present as an emergency;11 GPs must be educated to understand the signs and symptoms that are indicative of a brain tumour and triage these patients.
Dr Jenkinson stated that, over the last 40 years, the survival of patients with brain tumours has doubled,12 mainly as a result of improvements in and dissemination of best practice in surgery and radiotherapy. Only one drug, temozolomide, has been introduced in the last 20 years, which improves survival, reduces tumour volume, and halts progression in some patients with glioblastoma multiforme.13
Dr Jenkinson felt that the number of neurological centres for adults in the UK is probably about right, but that the 5% of children who develop brain cancer would potentially be better served by a rationalisation of the 19 existing paediatric centres to ensure that they are seeing a sufficient number to maintain the expertise to deliver the best outcomes.14 This will be improved by empowering patients to have the choice to seek and receive the care they deserve.
The messaging around GP visits of ‘one visit, one problem’ can be a barrier to identifying tumours …
In conclusion, both speakers felt that individuals with rarer cancers faced significant challenges, and that a number of specific actions were required to improve their care:
- education of all healthcare professionals on the signs and symptoms of rarer cancers, focused on ruling them out rather than ruling them in
- a Government-led public awareness campaign on the signs and symptoms of rarer cancers, to encourage patients to present earlier to catch their cancer before it has progressed
- more standardised and efficient referral pathways, with quick access to scans and diagnostic tests
- management of rare cancers by specialist teams with the resources and expertise to deliver the
- investment in research to develop new treatments.
Next, the future of treatment for cancer was discussed with reference to advances in diagnostic and therapeutic technologies.
Dr Nicholas van As, Consultant Clinical Oncologist and Medical Director, The Royal Marsden NHS Foundation Trust, explained that there have been huge advances in cancer treatment, in particular in the development of immunotherapies and cellular therapies. However, Dr van As stated that he believes we are now at the dawn of a new age of technological advancements in radiotherapy and imaging with enormous potential to improve cancer outcomes.
Dr van As advised that radiotherapy has completely transformed over the preceding 10 years owing to developments in the hardware used. However, it is advances in high-powered computing that have enabled significant improvements in radiotherapy planning. The traditional radiotherapy treatment machine, the linear accelerator (LinAc), is on a fixed gantry and moves around the patient in a single arc, stopping to deliver a single beam of radiation. In contrast, a CyberKnife, which is mounted on a robotic arm, can deliver treatment at any angle and incorporates technology that allows it to track a moving target and move in synchronicity with a tumour.15 This facilitates extremely accurate delivery of focused, high-dose radiotherapy, minimising the radiation dose to surrounding tissues.
Dr van As reported the development of another new machine—combining a magnetic resonance (MR) scanner and LinAc on the same gantry, the MR LinAc enables real-time, high-quality MR imaging during the delivery of radiotherapy.16 Dr van As stated that these technologies have allowed the administration of much higher doses over a much shorter period of time. This has been particularly beneficial during the COVID-19 crisis, enabling radiotherapy services to compress treatment time. Dr van As cited examples from his own experience at The Royal Marsden, where it has been possible to reduce the 15–20 conventional treatments required for breast cancer down to five treatments. Similarly, for lung cancer, treatment that years ago required 30 sessions can now be done in three treatments, and for prostate cancer, trials suggest that 20 treatments can be reduced to five.
Dr van As stated that further developments have taken place in imaging, which is key to diagnosing cancer. One example of how advances in imaging have impacted the diagnosis of cancer can be seen in multiple myeloma, which is generally diagnosed by blood tests, and used to be diagnosed using standard X-rays, which lack the sensitivity necessary to visualise the small holes in bone indicative of the condition. However, whole-body diffusion-weighted MR imaging, with which it is possible to differentiate multiple lesions in bone, has significantly improved the ability to diagnose multiple myeloma.17 Of more importance is the vast amount of data generated by these new technologies—for every area of interest on the MR image, digital information is attached, which lends itself to the use of artificial intelligence (AI). In future, it may be possible to use AI to assess, using algorithms, the extent of disease and how well it is responding to treatment.
This conference report was prepared by Specialised Medicine and the speakers have not had the opportunity to make corrections.
- NICE. Cancer Drugs Fund. www.nice.org.uk/about/what-we-do/our-programmes/nice-guidance/nice-technology-appraisal-guidance/cancer-drugs-fund (accessed 1 October 2020).
- NICE. Technology appraisal data: cancer appraisal recommendations. www.nice.org.uk/about/what-we-do/our-programmes/nice-guidance/nice-technology-appraisal-guidance/data/cancer-appraisal-recommendations (accessed 1 October 2020).
- NHS England. CAR-T therapy. www.england.nhs.uk/cancer/cdf/car-t-therapy/ (accessed 1 October 2020).
- Sarcoma UK. Understanding sarcoma. sarcoma.org.uk/about-sarcoma/understanding-sarcoma-0 (accessed 1 October 2020).
- Nandra R, Hwang N, Matharu G et al. One‑year mortality in patients with bone and soft tissue sarcomas as an indicator of delay in presentation. Ann R Coll Surg Engl 2015; 97: 425–433.
- Sarcoma UK. Impact of sarcoma: national sarcoma survey 2020. London: Sarcoma UK, 2020. Available at: sarcoma.org.uk/sites/default/files/resources/impact_of_sarcoma_2020_national_sarcoma_survey_-_technical_report_-_accessible.pdf
- NHS England. NHS Long Term Plan ambitions for cancer. www.england.nhs.uk/cancer/strategy/ (accessed 1 October 2020).
- National Cancer Intelligence Network. The completeness of soft tissue sarcoma data in the National Cancer Data Repository—tumours diagnoses between 2007 and 2009. London: NCIN, 2012. Available at: www.ncin.org.uk/view?rid=1222
- Clark M, Thomas J. Delay in referral to a specialist soft-tissue sarcoma unit. Eur J Surg Oncol 2005; 31 (4): 443–448.
- The Brain Tumour Charity. Less Survivable Cancers Taskforce. www.thebraintumourcharity.org/get-involved/campaigning-for-change/what-were-campaigning/less-survivable-cancer-taskforce/ (accessed 1 October 2020).
- Walter F, Penfold C, Joannides A et al. Missed opportunities for diagnosing brain tumours in primary care: a qualitative study of patient experiences. BJGP 2019; 69 (681): e224–e235.
- Cancer Research UK. Brain, other CNS and intracranial tumours survival statistics. www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/brain-other-cns-and-intracranial-tumours (accessed 1 October 2020).
- NICE. Guidance on the use of temozolomide for the treatment of recurrent malignant glioma (brain cancer). Technology Appraisal 23. NICE, 2001. www.nice.org.uk/ta23
- British Paediatric Neurology Association. Discussion document—safe and sustainable paediatric neurosurgical services in England. Bolton: BPNA, 2013. Available at: bpna.org.uk/uploads/doclib/members%20resources/Discussion_document.pdf
- The Royal Marsden NHS Foundation Trust. CyberKnife. www.royalmarsden.nhs.uk/your-care/treatments/radiotherapy/cyberknife (accessed 19 November 2020).
- The Royal Marsden NHS Foundation Trust. The UK’s first MR linac, combining MRI and radiotherapy technology. www.royalmarsden.nhs.uk/mrlinac (accessed 19 November 2020).
- Kmietowicz Z. New body scans help detect spread of myeloma. BMJ 2014; 348: g1170. doi.org/10.1136/bmj.g1170