Where does public funding for cancer research go

Abstract

Public funding for research into cancer or other diseases should match public health needs and disease prevalence. In reality, however, other factors influence the allocation of disease‐specific research funding.

With the advent of vaccines, antibiotics, hygiene, and food safety, the toll of infectious diseases on human lives has decreased substantially. Pathogens are no longer the major cause of death, disability, and suffering in both the developed world and many developing countries. In lieu, other diseases have risen in importance: According to the US Center for Disease Control and Prevention, cardiovascular disease (CVD), cancer, and chronic respiratory diseases—primarily chronic obstructive pulmonary disease (COPD)—are now the major causes of death and disability worldwide. CVD, the principal health problem for developed countries, has been the primary cause of mortality since 1921. Cancer is the second leading cause of death globally after CVD; in 2015, it killed 8.8 million people (http://www.who.int/mediacentre/factsheets/en/), and the number of patients diagnosed with cancer grows each year as populations get older. COPD has become the third most deadly disease after cancer, causing 3.2 million deaths in 2015 1.

… as money flows into research institutes, universities and hospitals, the question is how funding is being allocated to study specific diseases…

It is harder to compare such numbers with CVD, also known as “heart disease”, which includes multiple conditions and diagnoses, such as chest pain (angina), myocardial infarction, or stroke. In contrast, COPD and cancer are more clearly identifiable diseases in terms of diagnosis, biology, and pathogenesis. COPD is a chronic inflammatory lung disease that causes breathing difficulties, whereas cancer is an uncontrollable division of cells that invade nearby tissues.

Governments, industry, and philanthropies have been investing massively into research to understand the causes and mechanisms of these diseases and to develop new diagnostics, therapies, and preventive measures. Yet, as money flows into research institutes, universities, and hospitals, the question is how funding is being allocated to study specific diseases; in other words, does the investment meet the needs in terms of prevalence, mortality, and suffering.

Disease‐related funding for research

The bulk of funding for basic research into these common complex diseases comes from the government, followed by the pharmaceutical industry with some contributions by charity organizations. Public funding agencies, such as the US National Institutes of Health (NIH), the European Research Council, or the UK Medical Research Council, spend billions on research into these diseases each year. The 2017 NIH budget for medical research was US$33.1 billion, US$825 million higher than in 2016. Of these, NIH invested US$6.3 billion in 2017 for research on cancer (https://www.hhs.gov/about/budget/fy2017/budget-in-brief/nih/index.html).

The difficult decision that politicians and administrators face is how to allocate the financial resources to each disease. In fact, various studies show that governmental funding is not directly associated with disease burden: Some types of cancer appear to be relatively over‐ or underfunded 1, 2. For instance, in 2015, NIH spent US$674 million for breast cancer research versus US$349 million for lung cancer, although lung cancer killed more than 163,000 Americans, as opposed to 51,000 people who died from breast cancer the same year (https://report.nih.gov/categorical_spending.aspx; Table 1). The NIH spending for prostate cancer in 2015 was US$288 million, which is less than half that for breast cancer, despite the fact that 40,000 patients died from prostate cancer, just 20% less than breast cancer patients. The funding for pancreatic cancer was even less: US$174 millions, while 43,000 people died from it. The difference between public funding and disease burden is even more striking in the case of COPD: NIH invested a mere US$97 million, almost seven times less than for breast cancer, although COPD killed 292,000 Americans, six times more than breast cancer.

Table 1.

Disease burden and research spending in the United States. NIH Funding for Various Research, Condition, and Disease Categories

Disease	Mortality 2015	Funding 2015 (million dollars)
Breast cancer	51.103	674
Chronic obstructive pulmonary disease	292.471	97
Lung cancer	163.199	349
Prostate cancer	40.046	288
Childhood leukemia	–	155
Colorectal cancer	60.972	309
Pancreatic cancer	43.482	174

Source: https://report.nih.gov/categorical_spending.aspx, accessed 1.12.17.

The allocation of research funding is highly inequitable.

The funding situation in the UK is similar to that in the United States: The ratio of proportional funding to proportional mortality for 2010 was 4.91 for leukemia and 2.46 for breast cancer, as compared to 1.05 for prostate cancer, and only 0.37 and 0.23 for pancreatic and lung cancer, respectively 1 (Table 2). The vast differences between breast cancer and leukemia on the one hand and lung cancer and COPD on the other hand are also obvious in China, which has seen a drastic increase in lung cancer and COPD cases during the past 15 years, most likely due to air pollution. However, research funding from the National Natural Science Foundation of China (NSFC) seems to be more geared toward leukemia and breast cancer; the NSFC spend was 29,450 RMB for COPD and 63,580 RMB for lung cancer in 2012, versus 95,360 RMB for breast cancer and 32,7854 for leukemia, while the death rates were 934,000 for COPD and 513,000 for lung cancer, against 58,000 and 53,000 for leukemia and breast cancer, respectively 3 (Table 3).

Table 2.

Disease burden and research spending in the UK for selected diseases

Disease	%Mortality	%Funding	%Funding/%Mortality
Leukemia	3.31	16.26	4.91
Breast cancer	8.54	21.00	2.46
Colorectal cancer	11.84	11.32	0.96
Prostate cancer	7.92	8.31	1.05
Pancreatic cancer	5.84	2.18	0.37
Lung cancer	25.77	5.92	0.23

Source: Carter et al 1.

Table 3.

Mortality of selected diseases and research spending in China

Disease	NSFC research fund 2012, thousands in RMB (% of total)	Measure of disease burden 2010, thousands (rank)
		Mortality	DALYs
Leukemia	327,854 (12.8)	58 (17)	2,418 (19)
Diabetes	176,635 (6.9)	160 (11)	7,835 (9)
Ischemic heart disease	169,185 (6.6)	949 (2)	17,886 (3)
Breast cancer	95,360 (3.7)	53 (19)	1,671 (22)
Colorectal cancer	75,990 (3.0)	150 (12)	3,423 (15)
Lung cancer	63,580 (2.5)	513 (5)	11,318 (6)
Stomach cancer	53,610 (2.1)	297 (7)	6,616 (10)
Prostate cancer	34,530 (1.3)	11 (39)	178 (50)
COPD	29,450 (1.2)	934 (3)	16,724 (4)
Pancreatic cancer	24,051 (0.9)	58 (16)	1,322 (29)

Source: Xu et al 3.

Inequitable funding

Overall, the data indicate that public research money is not distributed proportionally based on disease prevalence and burden. “The allocation of research funding is highly inequitable”, commented Lawrence Gostin, Professor of Global Health Law at Georgetown University in Washington, DC, USA. In particular, breast cancer and leukemia receive a higher amount of research money relative to disease burden. “These diseases have highly passionate and vociferous advocates”, Gostin explained. “Leukemia is fueled by the face of children, highly compelling symbols that are sympathetic to audiences and the political community. Breast cancer has perhaps the most powerful and sympathetic advocates, often young mothers. It is also associated with women's rights, so there is synergy between the rights and needs of women and breast cancer”. The pink ribbon, for instance, the symbol of breast cancer activism, was promoted by Self magazine and Estee Lauder cosmetics in 1992, one year after the Visual AIDS Artists' Caucus created the red ribbon symbol for AIDS. “Breast cancer took a leaf out of the AIDS movement, with pink rather than red ribbons”, Gostin said. “In the US, even hulking NFL players wear pink”.

There are similar social reasons why COPD, lung cancer, and pancreatic cancer do not receive the same level of funding relative to mortality and burden. “The reason is there are no social movements around these diseases. As there are no identifiable and passionate advocates for these specific diseases, they are underfunded”, Gostin commented. Indeed, patient advocacy does have an impact on allocating research funding. “Patient activism and engagement is part of the policy making process”, said Jeremy Sugarman, Professor of Bioethics and Medicine, and Professor of Health Policy and Management at Johns Hopkins University in Baltimore, MD, USA. This is not necessarily an issue of overfunding or underfunding, Sugarman explained, but the fact that lobbying helps to attract funding for certain diseases and conditions. “If you hear stories that are well told, they attract funding”, he said. “As a society, we tend to pay attention to situations of urgency made clear through compelling narratives”.

Lung cancer and COPD have an additional perception problem that might affect research funding into these diseases. Most patients are smokers, and there is a seemingly simple solution to prevent the disease that requires no research at all: stop smoking. “Lung cancer may be perceived as more related to smoking and therefore potentially avoidable and not random”, commented Alastair Gray, Professor of Health Economics and Director of the Health Economics Research Centre at University of Oxford. What is more, lung cancer and COPD patients are often blamed for their own malady. “There is a major issue of blaming the victim”, added Gostin.

Funding by charities

These discrepancies in disease‐related research funding are also reflected in charities' funding for research. In 2017, the US Breast cancer Research Foundation (BCRF) awarded US$59.5 million and the Leukemia & Lymphoma Society US$40.3 million for research projects. The Lung Cancer Research Foundation spent US$1.6 million this year, and the COPD Foundation handed out only US$470,439 in research grants in 2016. The Prostate Cancer Foundation invested a total of US$25 million 2016, less than half of the money spent by the BCRF, which is the same ratio as NIH's funding for prostate versus breast cancer.

As a society, we tend to pay attention to situations of urgency made clear through compelling narratives.

“Survivors are a really powerful population in allocating funding in certain areas”, said Rachel Stirzaker, Director of Strategy of Cancer Research UK (CRUK). “Diseases with a higher number of survivors will have more weight behind them, and this reinforces more support for those diseases with high survival”. The 5‐year relative survival rate for stage III breast cancer, for instance, is about 72%, as opposed to 7% for pancreatic and 4% for lung cancer (https://www.cancer.org/cancer/). As Stirzaker said, a larger number of survivors help philanthropic organizations to fund and support research into these diseases.

The effects of research itself

Yet, disease burden and patient lobbying are not the only factors that influence public funding policies. As Sugarman explained, the scientific merits of research projects as well as the potential of research lead for developing treatments and diagnostics are also important determinants. Basic and clinical research findings that highlight promising avenues for treatment can turn the direction of basic research toward that disease. “I don't think many people are arguing that burden should be the only criterion”, Gray said. “There may be differences in how amenable diseases are to research‐based solutions, or it may be a role of the government to ‘over‐invest’ in areas that private and charitable spending ‘under‐invest’ in. Alternatively, there may sometimes be a case for ‘over‐spending’ to build research capacity”.

… companies seem to see lung cancer as a promising market for new treatments and thereby complement publicly funded research.

Likewise, pharmaceutical companies invest into research that is likely to yield results and thereby marketable products. However, pharmaceutical and biotech companies also invest into unmet medical needs so as to explore new markets. NIH reported 7,857 ongoing clinical trials for breast cancer in 2017, 5,360 for leukemia, and 5,912 for lung cancer. As most clinical trials are financed by the private sector, the high number for lung cancer relative to public funding indicates that companies seem to see lung cancer as a promising market for new treatments and thereby complement publicly funded research. There are 3,775 ongoing trials for prostate cancer, 2,997 for COPD, and 2,075 for pancreatic cancer, which is probably due to the fact that basic research and clinical research into these diseases are less advanced.

There are, however, other factors that influence the allocation of public money for research than just public perception, lobbying, or other social aspects. “In well‐established fields, it is more likely that these disease sites will have usable samples, existing drugs, and other things that researchers can work on in order to conduct their research”, Stirzaker explained. “This means that the research ecosystem sort of encourages more of the same type of research to be done”. In addition, scientists' reluctance to move from well‐established and well‐funded research fields into riskier areas reinforces the status quo. “Even if you want to spend more money on an area, there are not always people there for you to spend it on”, Stirzaker said. It can also lead to systemic bias, as funding decision panels will more likely consist of researchers from more established research areas, which could bias funding decisions, Stirzaker explained.

… scientists' reluctance to move from well‐established and well‐funded research fields into riskier areas reinforces the status quo.

Furthermore, funding decisions are typically based on the quality of the research proposal or the institution. According to Stirzaker, well‐established research fields are also more likely to come up with better‐formulated proposals and grant applications. To address these systematic issues, CRUK has begun to shift resources to underfunded diseases; it more than doubled its funding for lung cancer from £16 million in 2013–2014 to £43 million in 2016. “I think funding should be linked to the burden of disease and the potential for saving lives”, she commented. “But it's a very hard thing to shift; you can't just throw money at the problem – you may have to grow the new field”.

A more systematic approach

From a public health point of view, the allocation of research money should reflect the incidence, the mortality, and the social burden of a disease. From an egalitarian point of view, research funding of disease‐related research should be distributed fairly and impartially. Yet, democracy and freedom of speech also empower patients, their families, and their communities to raise their voices and convince politicians and the public that their plight deserves special attention. These values are sometimes incompatible, but the fact that some diseases are less “popular” than others should not limit research into their causes, their biology, or into possible treatments. “We wouldn't want the situation to be based solely on having the loudest person's priorities being funded; we have to take care that the needs of the less vocal as well as the least well off are taken care of”, Sugarman said. “Governments should find ways to establish fair processes of making fair and right decisions”.

To counter the effects of lobbying on public funding allocation would require a wider mobilization of public interest so as to draw attention to neglected diseases.

It is also necessary to look at the whole picture of government funding allocation from a broader perspective. Sugarman pointed out that we need a better view of the entire space of funding mechanisms before we could make a case for redirecting investments into particular disease‐related research. “It is not simply a matter of disease prevalence to the amount of funding”, he said. “[…] that may not represent what's being done for treating of those diseases, preventing those diseases or what other social needs necessarily compete with such funding decisions”. Moreover, disease burden is not merely a matter of incidence, mortality, or disability. “There are several ways of measuring burden, which might give slightly different results—for instance if informal care costs, or social care costs are included or excluded”, commented Gray. In the case of lung cancer and COPD, for instance, public health agencies have invested massively into smoking cessation campaigns owing to their strong association with smoking.

Nonetheless, the current funding situation could be improved to better meet clinical and societal needs. “The distribution of funds makes little sense from a public health or ethics perspective”, criticized Gostin. “Population health and fairness require a closer alignment of funding with the global health impacts”. To counter the effects of lobbying on public funding, allocation would require a wider mobilization of public interest so as to draw attention to neglected diseases. “What we want to do is to have fair processes that includes broad community engagement as well as scientific engagement to be taken into account as allocation decisions are being made”, Sugarman commented. “Governments should be able to take a more systematic approach”, Gray added. “Individual research councils should make decisions for a fairer allocation of money. There should ideally also be co‐ordination between different government‐funded research programs to obtain a more proportionate and fairer distribution”.

Yet, research councils and funding agencies are not the only decision‐makers—every part of the research enterprise shares responsibility for a fair allocation of funds. Funders, politicians, public health agencies, or international agencies, such as the WHO, as well as leaders of research institutions and senior researchers need to take a closer look at the health needs of the population to determine priorities in disease research. Assessing the deficiencies and gaps in biomedical research and care will help to optimize the use of available resources for research into the major diseases.