Background

Patient advocacy organizations (PAOs) are nonprofit organizations (NPOs) that work to combat a particular disease or group of diseases or support a certain patient population. These organizations and other cancer-related NPOs can be influential through political advocacy to shape health policy, fund medical research, accelerate regulatory approval of novel therapies, and expand insurance coverage for specialized diagnostics, drugs, or devices.^1–3 According to the most recent Giving USA report, health-related NPOs received $40.8 billion in contributions in 2018.⁴

NPOs in oncology are vital for advocacy, research, and supporting young investigators. They advocate to political leaders and legislatures regionally and nationally,¹ raise funds for cancer research in the basic and applied sciences and for clinical research, and make concerted efforts to support young, early-career investigators, such as the Stand Up To Cancer Innovative Research Grants program.

Although there has been much investigation into potential financial conflicts of interest from NPOs and PAOs accepting contributions from for-profit corporations,^2,3,5,6 little is known about the distribution of funding for NPOs classified by the cancer type they support compared with the burden of each cancer type on society. It is possible that funding of NPOs increases proportionally with the incidence and number of deaths caused by the type of cancer those organizations support. It is also likely that other factors, such as public awareness, advertising, disease stigma, or political influences, can skew funding toward certain malignancies.

Some data show that individual donors are largely unaware of which medical causes are well supported and which are underfunded, but if informed of these disparities, the public can attempt to compensate for them.⁷ A study in the United Kingdom that surveyed 401 members of the general population found that respondents grossly overestimated British government funding for cancer research compared with other medical research funding. After respondents were made aware of this or when asked about hypothetical cuts in governmental cancer research funding, they stated that they would increase donations to cancer research by 18% to compensate.⁸

Our study compared the distribution of NPO funding across cancer types versus their respective burdens on society and explored factors that may influence which cancers receive more public support.

Patients and Methods

Results

The 2 search methods yielded 172 cancer-related NPOs, 53 of which were excluded because they were primarily medical care delivery organizations (eg, acute care hospitals or clinics), yielding 119 cancer-related NPOs included for analysis. The complete list of organizations is shown in supplemental eAppendix 1; 4 organizations supported ≥2 cancer types and were counted toward each cancer type they supported.

Cancer-related NPOs generated $5.98 billion in annual revenue in 2015 through 2016. Most of the revenue, $4.59 billion (76.8%), was generated by the 59 (50%) organizations that support cancer in general with no focus on one disease (eg, American Cancer Society [ACS]). Table 1 shows the complete breakdown of number of NPOs and amount of annual revenue supporting each cancer type.

Table 1.

Characteristics of Nonprofit Organizations

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Among cancer type–specific NPOs, the cancers with the largest number of organizations were breast cancer (13; 22%), pediatric cancers (13; 22%), leukemia (4; 7%), and lung cancer (4; 7%). The cancer types with the largest total annual revenue were breast cancer ($460 million; 33.2%), leukemia ($201 million; 14.5%), pediatric cancers ($177 million; 12.8%), and lymphoma ($145 million; 10.5%). Cancer types with only 1 NPO supporting them were neuroendocrine, nonmelanoma skin, liver and bile duct, cervical, and endometrial cancers; myelodysplastic syndromes (MDS); and sarcoma. Cancers with the lowest total annual revenue were sarcoma ($5.1 million; 0.4%), endometrial cancer ($5.4 million; 0.4%), cervical cancer ($5.4 million; 0.4%), MDS ($5.6 million; 0.4%), and liver and bile duct cancers ($5.8 million; 0.4%). Notably, there were no NPOs that had at least $5 million in annual revenue supporting kidney, bladder, gastric, or esophageal cancers.

The 2017 SEER database statistics for annual incidence, mortality, and PYLL for each cancer type that were used in this analysis are shown in supplemental eTable 2.

Scatter plots comparing the total annual revenue per cancer type with the annual incidence, number of deaths, and PYLL are shown in Figure 1. Comparison of annual revenue with incidence (Figure 1A) showed that breast cancer, leukemia, lymphoma, pediatric cancers, and neuroendocrine cancers were well funded in proportion to their incidences. Multiple myeloma appeared to be proportionally funded, whereas gastrointestinal cancers (colorectal, pancreatic, and liver and bile duct), gynecologic cancers (ovarian, endometrial, and cervical), lung cancer, prostate cancer, melanoma, MDS, sarcoma, and brain cancers were all poorly funded in proportion to their incidences. A consistent pattern emerged when comparing annual revenue with mortality (Figure 1B) and PYLL (Figure 1C), which was largely in line with the comparison between annual revenue and incidence. Breast cancer, leukemia, lymphoma, and pediatric cancers were well funded in proportion to their annual number of deaths and PYLL. All others, including gastrointestinal, gynecologic, lung, prostate, and brain cancers and melanoma, and multiple myeloma, were poorly funded in proportion to their annual number of deaths and PYLL.

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Scatter plots using logarithmic scales for annual revenue by cancer type versus annual (A) incidence, (B) mortality, and (C) PYLL. Logarithmic trendlines and R² values are displayed in each panel.

Abbreviations: MDS, myelodysplastic syndromes; MM, multiple myeloma; PYLL, person-years of life lost.

Citation: Journal of the National Comprehensive Cancer Network J Natl Compr Canc Netw 17, 7; 10.6004/jnccn.2018.7280

The scatter plots in general showed little correlation between annual incidence, mortality, or PYLL with amount of funding for NPOs of a particular cancer type. The Pearson product-moment correlation coefficients between annual revenue and annual incidence, mortality, and PYLL were 0.61, 0.16, and 0.16, respectively. These indicate that there may be a weak correlation between annual revenue and cancer type–specific incidence, but there is essentially no correlation between annual revenue and cancer type–specific mortality or PYLL.

Analysis for correlation of different spending priorities on annual revenue showed that increased spending on fundraising and administrative costs was the most highly correlated with higher annual revenue, with Pearson correlation coefficients of 0.99 and 0.97, respectively. In addition, 4 of the top 5 histologies in terms of spending on fundraising were also in the top 5 for annual revenue. Conversely, 4 of the bottom 5 histologies in terms of spending on fundraising were also in the lowest 5 for annual revenue. Increased spending on research funding, patient education, and patient treatment was also highly correlated with higher annual revenue, with Pearson correlation coefficients of 0.94, 0.93, and 0.93, respectively. Spending on professional education such as physician/researcher conferences, or policy advocacy such as political lobbying was poorly correlated with annual revenue, with Pearson correlation coefficients of 0.27 and 0.06, respectively. A full listing of Pearson correlation coefficients between annual revenue and each of the 9 expenditure categories is shown in Table 2.

Table 2.

Correlation Between Area of Expenditure and Annual Revenue

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Evaluation of the literature for cancers strongly associated with high-risk, stigmatized behaviors identified 7 malignancies: lung (smoking), head and neck (smoking, alcohol), bladder (smoking), esophageal (smoking, alcohol), liver (alcohol, intravenous drug use), cervical (sex), and nonmelanoma skin cancers (tanning beds).^11–15 All 7 were poorly funded in at least one epidemiologic metric, and all but skin cancer were poorly funded in all 3 metrics (incidence, mortality, and PYLL). Conversely, 14 malignancies had no strong association with a stigmatized behavior: leukemia, lymphoma, multiple myeloma, sarcoma, melanoma, and breast, pediatric, neuroendocrine, colorectal, pancreas, prostate, ovarian, endometrial, and brain cancers.⁸ The 4 cancer types that were well funded across all 3 metrics (breast cancer, leukemia, lymphoma, and pediatric cancers) all fell into this category. Neuroendocrine cancers were well funded compared with their incidence and were not evaluated for mortality or PYLL because these data are not known.

Discussion

It is clear that with nearly $6 billion in annual revenue, cancer-related NPOs have an important role in funding medical research, supporting and educating patients and their families, and influencing health policy. This figure also demonstrates how deeply invested society is in cancer research and advocacy. However, our data show that this investment is not equitable across all cancer types and that the disease burden by cancer type does not correlate with the amount of NPO funding for a particular cancer. There is a weak association between increased incidence of a particular cancer type and funding for NPOs supporting that cancer, but essentially no correlation between mortality or PYLL and NPO funding. Many common or highly lethal diseases, including lung, colorectal, pancreatic, ovarian, and endometrial cancers, are underfunded relative to their burdens on society. Underfunding may have negative downstream effects on research, novel drug development, and number of FDA drug approvals for poorly funded cancers.

Our data show that increased spending on fundraising, administrative costs, and patient education to inform and energize the public about a cause correlates with increased revenue. Whether this is because organizations with higher revenue can afford to spend more on these efforts or because increased fundraising and patient education spending leads to more revenue is unknown.

Individual donors are motivated by several factors when they choose which causes to support. Association with high-risk behaviors, such as smoking or alcohol abuse, seems to be an important factor leading to decreased funding for stigmatized cancers. However, many common or deadly cancers with no association with a stigmatized behavior were still poorly funded according to our findings, indicating that there are other relevant factors. Many donors choose a cause they are affected by, either personally or through family or friends.^1,8 Marketing and social media campaigns, such as the pink ribbon representing breast cancer awareness, can increase overall public awareness of a disease and thereby increase donations.¹⁶ Diseases that are common but with indolent courses or relatively low mortality rates also have more survivors who can later become advocates for the cause and attract more donors.

The greatest limitation of this study is that most charitable dollars, nearly $4.6 billion, go to NPOs that support all cancers, and it is unknown which diseases receive this money and in what proportion. These organizations may increase support for poorly funded causes (“crowding out”), build on already well-funded causes (“crowding in”), or act independently.⁸ This analysis also does not account for the NCI’s funding distribution across cancer subtypes, which represents a large source of research dollars. However, a 2012 study that examined NCI funding distribution compared with cancer burden showed that breast, prostate, and brain cancers and leukemia were well funded, whereas colorectal, pancreatic, liver and bile duct, endometrial, and bladder cancers were poorly funded.¹⁷ Based on these data, it is unlikely that NCI funding would offset the NPO funding pattern illustrated in our study. Additional data from the National Cancer Research Institute in the United Kingdom showed a pattern of disproportionate funding across cancer subtypes compared with their societal burden similar to what our study showed for US NPOs.^18,19

Conclusions

The goal of our study was not to divert funding away from any disease but rather to educate the public and augment charitable funding for diseases that do not receive proportionate support. Well-funded NPOs should be applauded for their successes and could collaborate with other organizations to improve funding. No one entity can fully support research and patient advocacy. Multiple different groups from government, industry, academic institutions, and philanthropic organizations are necessary. These data could help inform the funding allocations of large, general cancer NPOs and governmental entities such as ACS or the NCI and inform individual donors and grant-makers.

We hope these findings stimulate further discussion and research to explore the granular aspects of NPO funding, enabling stakeholders to make evidence-based decisions for optimal allocation.