Comparison of Cancer Burden and Nonprofit Organization Funding Reveals Disparities in Funding Across Cancer Types

Abstract

Background: Nonprofit organizations (NPOs) in oncology are vital for patient advocacy and funding research for rare cancers, young investigators, and innovative projects. However, some cancers may be underfunded relative to their burden. This study examined the alignment of cancer burden by histology with NPO funding for each histology. Patients and Methods: This nationwide, cross-sectional study conducted from October 2017 through February 2018 included all oncology NPOs with >$5 million in annual revenue. Total revenue from NPOs supporting individual cancer types with the incidence, mortality, and person-years of life lost (PYLL) for each cancer type was compared using scatter plots and Pearson correlation coefficients. Correlation of expenditure types (eg, fundraising, patient education) with revenue was assessed using Pearson correlation coefficients. Effect of disease association with a stigmatized behavior (eg, lung cancer and smoking) was evaluated using descriptive statistics. Results: A total of 119 cancer-related NPOs were included, generating approximately $6 billion in annual revenue in 2015. Cancers with the largest 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%). Breast cancer, leukemia, lymphoma, and pediatric cancers were all well funded compared with their incidence, mortality, and PYLL. Gastrointestinal (colorectal, pancreas, and hepatobiliary), gynecologic (ovarian, cervical, and endometrial), brain, and lung cancers were poorly funded in all 3 metrics. All cancers associated with a stigmatized behavior were poorly funded in at least 2 metrics. Increased spending on fundraising, administrative costs, patient education, and treatment was highly correlated with increased revenue (Pearson correlation coefficients all >0.92). Conclusions: NPO funding by cancer type is not proportionate with individual cancer burden on society. Disease stigma negatively impacts funding. A significant need exists to increase awareness and funding for many undersupported but common and highly lethal cancers.

Lung cancer screening implementation: Complexities and priorities

“…As disease advocacy has taken on a greater role setting medical research priorities, stigma has become increasingly relevant, contributing to funding disparities that see lung cancer research receive far less funding than for non-stigmatized cancers given the size of the population affected. 84,85 Anti-smoking campaigns reinforce the perception of 'self-inflicted' disease felt by lung cancer patients. 72,86 These measures, highly successful in reducing smoking prevalence, perpetuate stigma by decreasing empathy for smokers.…”

“…Stigma has been unintentionally strengthened by tobacco control measures and the growth of patient advocacy. As disease advocacy has taken on a greater role setting medical research priorities, stigma has become increasingly relevant, contributing to funding disparities that see lung cancer research receive far less funding than for non‐stigmatized cancers given the size of the population affected 84,85 . Anti‐smoking campaigns reinforce the perception of ‘self‐inflicted’ disease felt by lung cancer patients 72,86 .…”

An examination of two dichotomies: Women with lung cancer and living with lung cancer as a chronic disease

“…Individuals with lung cancer are subject to questions and comments from strangers and acquaintances based on public beliefs about the disease 96 . There are even adverse effects on drug development as lung cancer research has been underfunded compared to other cancers both at governmental levels and from non‐profit research funding entities 97 . Until efforts to eliminate stigma are unified, 98 stigma will remain ‘a part of the lung cancer experience’ 81 (page 16).…”

A 10-Year Cross-Sectional Analysis of Public, Oncologist, and Patient Attitudes About Lung Cancer and Associated Stigma

“…6 Differential treatment by medical professionals may be delivered or perceived, 7,11 and lung cancer research is underfunded by both governmental and nonprofit entities. 12 Over the past decade, significant advancements have been made in the diagnosis and treatment of lung cancer. The introduction of screening and rapid development of novel classes of targeted and immunotherapies are extending survival and potentially impact perceptions about the disease.…”