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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.

Background: National Cancer Institute (NCI) and nonprofit organization (NPO) funding have driven recent advancements in oncology through research and advocacy. However, some cancers may be underfunded relative to their burden. This study examined the alignment of cancer burden by histology with NCI and NPO funding for each histology. Methods: The GuideStar database was used to find all cancer NPOs with >$5 million (M) in annual revenue (AR) using NTEE codes and 165 cancer-related search terms. Care delivery NPOs were excluded. NPOs were classified by the histology they support. AR was obtained from IRS Form 990s for each NPO. NCI funding allocation across histologies was obtained from the NCI Funded Research Portfolio data. Total funding for each histology was calculated by adding the NCI funding and the ARs for all NPOs in that histology. Cancer burden based on annual incidence, deaths, and person-years of life lost (PYLL) was obtained from SEER data. Comparison of total NCI and NPO funding with incidence, deaths, and PYLL of each histology was done using descriptive statistics and Pearson correlation coefficients. Results: 119 NPOs with total AR of $6 billion were included. 59 (50%) were histology agnostic and accounted for $4.6 billion (76.8%) of total AR. Cancers with the most NPOs were breast (13, 11%), pediatric (13, 11%), leukemia (4, 3.4%) and lung (4, 3.4%). There were no NPOs with AR >$5 M for esophageal, gastric, kidney, or bladder cancers. Cancers with the most combined NCI and NPO funding were breast ($1 billion), leukemia ($448 M), lung ($348 M), and prostate ($303 M). The ratios of combined NCI and NPO funding vs incidence, mortality, and PYLL are shown in . Cancers with the best funding vs incidence were leukemia, ovarian, and breast. Cancers with the best funding vs deaths were breast, leukemia, and melanoma. Cancers with the best funding vs PYLL were breast, leukemia, and prostate. Colon, liver, lung, and bladder cancers were poorly funded in all 3 metrics. The correlation coefficients between funding and incidence, deaths, and PYLL were 0.74, 0.34, and 0.36, respectively. Conclusions: There is substantial support for cancer research and advocacy in both the government and nonprofit sectors. While funding by cancer type was moderately proportional to incidence, it was poorly correlated with deaths and PYLL. There is significant need to increase awareness and support for many under-supported, but common and highly lethal cancers.