The hierarchy of illness: does the charity model distort how we fund disease?

The debate in brief

Cancer Research UK had a total income of £684 million in 2023-24. The British Heart Foundation raised around 180 million pounds. Meanwhile, the UK's leading liver disease charity, the British Liver Trust, operates on an income of under 2 million pounds -- despite liver disease being the third largest cause of premature death in the UK and the only major cause of death still rising year on year. Rare disease charities, many run by parents from their kitchen tables, operate on budgets that would not cover the salary of a single senior fundraiser at a large cancer charity.

The disease-specific charity model organises health philanthropy around individual conditions. This creates a market in which some diseases attract enormous public sympathy and donations while others -- equally devastating, equally deadly -- attract almost nothing. The result is a funding landscape that reflects the emotional resonance of diseases rather than their burden, prevalence, or the potential for research breakthroughs.

Quick takeaways

The arguments

The case that the hierarchy is harmful

The argument is straightforward: if charitable funding for health research and patient support is distributed according to emotional appeal rather than disease burden, then some patients receive less support than they would under any rational allocation system. This is not an abstract concern.

Liver disease kills around 11,000 people a year in England and Wales and is the only major cause of death where mortality is increasing. Yet liver disease charities are among the smallest in the health sector. The reasons are well understood: liver disease is associated with alcohol, obesity, and intravenous drug use, all of which carry stigma. Donors are less moved by conditions they perceive as self-inflicted. The charitable funding gap for liver disease is not a market failure in the economic sense -- the market is working exactly as designed, responding to donor preferences -- but it is a moral failure in that it penalises patients for the perceived causes of their illness.

Dementia presents a similar case. Alzheimer's Research UK has grown significantly, but dementia research remains underfunded relative to the condition's prevalence, cost to the NHS, and impact on families. The Alzheimer's Society has noted that dementia receives a fraction of the research funding per patient that cancer receives, despite dementia being the leading cause of death in England and Wales.

Rare diseases compound the problem further. Any individual rare disease may affect only a few hundred or thousand people in the UK. Patient organisations for conditions such as Huntington's disease, cystic fibrosis, or muscular dystrophy do essential work, but their fundraising potential is inherently limited by the small number of affected families. The result is that the rarest and often most devastating conditions receive the least charitable attention.

The case that the model works despite its imperfections

Defenders of disease-specific charities point to what the model has achieved. Cancer survival rates in the UK have doubled since the 1970s, and charitable funding has played a significant role in that improvement. Cancer Research UK funds around 50% of publicly funded cancer research in the UK -- a contribution that has accelerated discovery, supported clinical trials, and trained generations of researchers. The British Heart Foundation has funded breakthroughs in cardiovascular medicine, including statin therapy and surgical techniques that save thousands of lives annually.

The argument is that the disease-specific model mobilises money that would not otherwise be given. A donor who contributes to Cancer Research UK because their mother had breast cancer is not making a calculated choice between competing health priorities. They are giving because of a personal connection. If cancer charities did not exist to channel that impulse, the money would not flow to liver disease research instead -- it would more likely not be given at all. The relevant comparison is not between cancer funding and liver disease funding. It is between cancer funding and no funding.

There is also an effectiveness argument. Disease-specific charities develop deep expertise in their condition, build relationships with clinical and research communities, and maintain focus over decades. This specialisation produces results. A generic "health research" charity would lack the disease-specific knowledge, networks, and patient insight that make organisations like Cancer Research UK, the British Heart Foundation, and the MND Association effective funders and advocates.

The structural question

The deeper issue is whether the charity model should be expected to allocate health funding rationally at all. Charitable giving is a voluntary act driven by personal motivation, cultural norms, and emotional connection. Expecting it to produce an equitable distribution of funding across diseases is like expecting a market to produce an equitable distribution of income -- it is a category error. The rational allocation of health research funding is properly the job of the state, through bodies such as the National Institute for Health and Care Research (NIHR) and UK Research and Innovation (UKRI).

If this is correct, the problem is not that cancer charities raise too much money. It is that the state does not adequately fund research into conditions that lack a wealthy charitable patron. The solution is not to redistribute charitable giving but to ensure that public funding fills the gaps that charity, by its nature, cannot.

The evidence

The NCVO Civil Society Almanac provides data on charitable income by subsector, showing the dominance of health charities and the concentration of income among the largest organisations. Cancer Research UK's annual report confirms an income of £684 million in 2023-24. The British Heart Foundation reports income of around 180 million pounds. By contrast, the British Liver Trust's income is under 2 million pounds, and many rare disease charities operate on less than 500,000 pounds.

The Global Burden of Disease study, produced by the Institute for Health Metrics and Evaluation and with UK-specific data available through The Lancet, provides the most rigorous comparison of disease burden by condition. UK data consistently shows that the charitable funding landscape does not correspond to burden measured by mortality, morbidity, or disability-adjusted life years (DALYs).

Research by the Association of Medical Research Charities (AMRC) maps charitable research expenditure by disease area. AMRC members collectively spend around 1.7 billion pounds annually on medical research, with cancer accounting for the largest single share. The AMRC's data is the best available source for understanding the distribution of charitable health research funding in the UK.

The NIHR's annual reports document public health research funding by disease area, providing a basis for comparing charitable and statutory research investment. Analysis by the UK Clinical Research Collaboration's Health Research Classification System has repeatedly shown mismatches between disease burden and total research investment -- from both charitable and public sources.

Current context

The period since 2024 has seen increased attention to the distribution of health charity funding. The employer NIC increase effective from April 2025 placed additional financial pressure on all health charities, but the burden fell disproportionately on smaller organisations with less financial resilience. Several rare disease charities reported that the NIC increase consumed a significant proportion of their operating margins.

The debate about disease funding hierarchies has been amplified by the effective altruism movement's challenge to traditional giving patterns. GiveWell and other EA-aligned organisations have argued that donors should prioritise giving where it can achieve the greatest health impact per pound -- a framework that would redirect funding away from well-resourced cancer charities toward neglected tropical diseases, mental health, and underfunded conditions. While the EA framework has not shifted mass donor behaviour in the UK, it has influenced younger donors and provoked useful debate about how health philanthropy should be directed.

The NIHR has continued to expand its portfolio of research funding, including in areas historically underserved by both charity and government -- notably liver disease, obesity, and mental health. Whether public funding can fully compensate for the gaps in charitable funding remains an open question.

Last updated: April 2026

What this means for charities

Disease-specific charities operate within a system that rewards some conditions and neglects others, and most individual organisations have limited ability to change this dynamic. A liver disease charity cannot make its cause more emotionally appealing. A rare disease charity cannot expand its donor base beyond the affected community. The structural forces that produce the hierarchy -- donor psychology, media coverage, institutional fundraising capacity -- are largely beyond the control of individual organisations.

What charities can do is be honest about the landscape. Large health charities should resist the temptation to claim that their disease is uniquely deserving or underfunded when the data shows otherwise. Smaller charities should consider collaboration, coalition-building, and shared services as ways to achieve impact at scale. The AMRC provides a model for collective advocacy, but the sector could go further in coordinating research priorities across disease areas rather than competing for a fixed pool of charitable income.

For donors and funders, the implication is that giving to the most visible charity is not the same as giving where the need is greatest. Informed giving requires understanding the relationship between charitable funding, public funding, and disease burden -- and making deliberate choices rather than following fundraising appeals.

Common questions

Why does cancer get so much charitable funding?

Cancer combines several features that drive charitable giving: it is extremely common (around half of people in the UK will be diagnosed with cancer at some point), it is widely feared, and it has a long history of organised charitable response. Cancer Research UK traces its origins to 1902. Macmillan Cancer Support has built one of the most recognised charity brands in the UK. Decades of investment in fundraising infrastructure -- mass participation events, legacy programmes, corporate partnerships, retail operations -- have created a self-reinforcing cycle in which cancer charities attract the most income and therefore have the most resources to invest in further fundraising.

Is it wrong to give to cancer charities?

No. Cancer charities fund essential research and provide vital patient support. The question is not whether individual cancer donations are worthwhile -- they plainly are -- but whether the overall distribution of charitable health funding serves patients equitably. A donor who gives to Cancer Research UK is supporting important work. A donor who gives to the British Liver Trust or a rare disease charity may be supporting work where the marginal pound has greater impact, precisely because those organisations have so much less to work with.

Could one charity cover all diseases?

In theory, a single health research charity could allocate funding across diseases based on burden, research potential, and clinical need. In practice, the specialisation of disease-specific charities is a source of strength. Cancer Research UK's deep expertise in oncology, its relationships with clinical trial networks, and its understanding of the research landscape produce better research funding decisions than a generalist body could. The trade-off is between the efficiency of specialisation and the equity of a more centralised model.

Do disease hierarchies affect NHS treatment?

Not directly -- NHS treatment is allocated based on clinical guidelines from NICE and NHS England, not charitable funding levels. But charitable research funding influences which treatments exist. If a disease receives less research funding, fewer potential treatments are developed, fewer clinical trials are conducted, and patients have fewer options. The hierarchy of charitable funding ultimately becomes a hierarchy of therapeutic possibility.

What about mental health?

Mental health has historically been one of the most underfunded areas of health charity, despite being the single largest cause of disability in the UK. Mind and Rethink Mental Illness are significant charities, but their combined income is a fraction of the major cancer charities. The gap between mental health's disease burden and its charitable funding is arguably the most striking illustration of the hierarchy of illness. Increased public awareness of mental health since 2020 has improved charitable income for mental health organisations, but the gap remains substantial.

How do rare disease charities survive?

Many operate on very small budgets, reliant on the dedication of affected families. Genetic Alliance UK and Rare Disease UK provide coordination, but individual rare disease charities often depend on a handful of donors, small grants, and volunteer labour. Some have found success through pharmaceutical company partnerships -- particularly around drug development for specific conditions -- though this raises its own questions about independence. The National Lottery Community Fund and other grant-makers have supported rare disease organisations, but the funding remains precarious.

Key sources and further reading

• Civil Society Almanac 2024 -- NCVO, November 2024. Sector-wide data on charitable income, including analysis of the health charity subsector and income concentration among the largest organisations.

• AMRC Annual Medical Research Expenditure Data -- Association of Medical Research Charities. The primary source for charitable health research spending by disease area in the UK.

• Global Burden of Disease Study -- UK Data -- Institute for Health Metrics and Evaluation, published in The Lancet. Disease burden data by condition including mortality, morbidity, and DALYs, enabling comparison with funding levels.

• Cancer Research UK Annual Report -- Cancer Research UK. Detailed financial data including income, research expenditure, and funding priorities.

• "The Lancet Liver Commission" -- The Lancet, 2024. A comprehensive commission documenting the rising burden of liver disease in the UK and the inadequacy of both charitable and public funding.

• UK Clinical Research Collaboration Health Research Classification System -- UKCRC. Analysis of total health research funding by disease area across both charitable and public sources.

• Rare Disease UK Framework -- Genetic Alliance UK. Policy framework and evidence on the challenges facing rare disease patient organisations and the gaps in research and support funding.

• NIHR Annual Reports -- National Institute for Health and Care Research. Data on publicly funded health research by disease area and programme.