The hidden assassin Cancer in the UK: a guide for donors and grant-makers One in three of us will be diagnosed with cancer in our lifetime – there are more than 270,000 new cases diagnosed annually in the UK, and over a million people living with cancer here. One in four will die of it – there are over 150,000 deaths each year in this country. Mortality rates are falling, however, by almost 12% during the last 25 years, a period that has seen incidence rise by nearly 24%. Increasing incidence is partly the result of an ageing population – cancer primarily a disease of old age. 65% of cancers are diagnosed in people over 65 years of age; as we get older, so cancer risk increases. Nonetheless, an increasing number of younger people are also getting cancer, and of those who die before retirement age, more than one in three will die of cancer. The loss of these people to their families will of course be huge; but there is a cost to the overall economy, too, from lost output, of around £600 million each year. Cancer arises from a combination of genetic defects, lifestyle factors – such as diet, smoking, drinking and exercise habits – the environment in which we live and, especially in the developing world, pollution and infectious disease – and chance. It is a disease where a single cell amongst the body’s hundred billion, having suffered genetic damage, begins to divide in an uncontrolled way, invading and destroying healthy tissue around it to become a tumour which, left untreated, will ultimately spread throughout the body. The problem is huge, the interventions many. In this report we look at treatment, mainly the preserve of the state, but with a growing number of charities supporting it, providing services from bone marrows to information help-lines; palliative care (also the subject of a separate NPC report), where the state and voluntary sector work together to provide hospices and home care; and research, where a long- established charitable sector is increasingly working with the state to improve cancer prevention, detection and, of course, treatment. We estimate that although well over £5 billion is spent on cancer each year in the UK, principally by the state, but also by charities and pharmaceutical companies, the desired outcomes of the various interventions are fairly simple: the improvement of quality of life and/or quantity – prolongation – of life. Written by: Dinah McKenzie Philanthropists have a long history in this field – from the private Justin Alexander founding of hospitals and hospices, through the setting up of the Iona Joy Imperial Cancer Research Fund early last century to the funding of supportive and palliative care in more recent years. Yet future funding opportunities remain many and compelling in treatment, palliative care and research alike. New Philanthropy Capital The Hidden Assassin September 2004 1 Contents Introduction .............................................................................................................. 3 Section 1: Background ............................................................................................ 4 What is cancer? ........................................................................................................................ 4 Incidence, mortality and survival...............................................................................................5 Causes of cancer .................................................................................................................... 11 The biology and progression of cancer .................................................................................. 16 Section 2: Interventions: Treatment ..................................................................... 18 Structure of the NHS............................................................................................................... 18 The Cancer Plan ..................................................................................................................... 20 Prevention ............................................................................................................................... 21 Detection and diagnosis.......................................................................................................... 22 Treatment ................................................................................................................................ 23 The role of charities................................................................................................................. 25 Section 3: Interventions: Palliative care............................................................... 29 Who funds palliative care?......................................................................................................31 Role of government................................................................................................................. 32 Role of the voluntary sector ....................................................................................................33 Section 4: Interventions: Research ...................................................................... 37 Research funding .................................................................................................................... 37 The National Cancer Research Institute (NCRI) .................................................................... 37 Government funding................................................................................................................ 38 Charitable funding of cancer research.................................................................................... 39 The peer review system and progression of research ........................................................... 40 Pharmaceutical company funding........................................................................................... 41 Current research in the UK .....................................................................................................42 Section 5: Outcomes ............................................................................................. 49 Treatment ................................................................................................................................ 49 Palliative care.......................................................................................................................... 54 Research ................................................................................................................................. 56 Comparison of costs of interventions and their outcomes ..................................................... 59 Section 6: Conclusions ......................................................................................... 62 Appendix 1: Examples of delivery visited by NPC ..................................................................... 64 Appendix 2: UK incidence, mortality and survival rates of the most common cancers............. 67 Appendix 3: Notes on some common cancers: lung, breast, colo-rectal, prostate, oesophageal, stomach, pancreatic, lymphomas, leukaemia, ovarian, malignant melanoma .......................... 68 Glossary...................................................................................................................................... 79 Acknowledgements..................................................................................................................... 80 Endnotes..................................................................................................................................... 82 New Philanthropy Capital The hidden assassin September 2004 2 Introduction ‘Doctor Thomas sat over his dinner, Though his wife was waiting to ring, Rolling his bread into pellets; Said, ‘Cancer’s a funny thing. Nobody knows what the cause is, Though some pretend they do; It’s like some hidden assassin Waiting to strike at you.’ W H Auden, from the poem Miss Gee * Many of us will succumb to cancer at some point during our lives. All of us will know someone living with the disease, and several who have died from it – its ubiquity a stark fact of the modern world. So what, if anything, can philanthropists do to improve the picture? The hidden assassin: Cancer in the UK seeks to explore the extent of the disease in Britain, and to look at the various interventions to treat and support cancer patients, present and future, made by the voluntary sector and the state – in the hope of pointing up the places where funders can make a difference. The purpose of this report This report aims to be a practical guide for donors interested in funding projects to help those affected by cancer in Britain. Its purpose is to provide the information and analysis required more fully to understand the extent of the issue, the types of response offered by the state and by voluntary sector organisations, and the outcomes generated by those various interventions. It is addressed to all donors – from private individuals, who may be relatively new to the subject, through to grant-makers with extensive experience in the area. When we refer to ‘donors’ we include grant-makers, private individuals, companies or anyone else wishing to donate funds or to provide grants, goods or services. Funding projects in this field can be far from straightforward, first because there are over a thousand cancer charities in the UK, and then since it is not always apparent where private funding