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

Suneel D. Kamath, Sheetal M. Kircher, and Al B. Benson III


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.

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HSR19-094: A Comparison of Cancer Burden and Funding From the National Cancer Institute and Nonprofit Organizations Reveals Disparities in the Distribution of Funding Across Cancer Types

Suneel D. Kamath, Sheetal M. Kircher, and Al B. Benson III

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 Table 1. 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.

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Telemedicine in Oncology and Reimbursement Policy During COVID-19 and Beyond

Sheetal M. Kircher, Mary Mulcahy, Aparna Kalyan, Christine B. Weldon, Julia R. Trosman, and Al B. Benson III

The first confirmed case of coronavirus disease 2019 (COVID-19) in the United States was reported on January 20, 2020. As of September 17, 2020, there were more than 6.6 million confirmed cases and 196,277 deaths. Limited data are available on outcomes of immunocompromised patients, but early published reports from China indicate that those with cancer have a 3.5 times higher risk of ICU admission, mechanical ventilation, or death than those without cancer. Because of the uncertain behavior of COVID-19, it has become imperative for practices to limit exposure to vulnerable patients. Telemedicine has been one of the cornerstones of caring for patients with cancer during the COVID-19 pandemic. This review provides an overview of reimbursement policy by public and private payers before and during the COVID-19 pandemic, describes implications in cancer care, and offers considerations for future reimbursement policy.

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Promoting the Shared-Care Model for Adolescent and Young Adults With Cancer: Optimizing Referrals and Care Coordination With Primary Care Providers

Karen E. Kinahan, Sheetal Kircher, Jessica Altman, Alfred Rademaker, John M. Salsman, Aarati Didwania, Bridget O'Brien, Alpa C. Patel, and Stacy D. Sanford

Background: The “shared-care model” for patients with cancer involves care coordination between primary care providers (PCPs) and oncologists, with the goal of optimizing survivorship care. However, a high proportion of adolescent and young adult (AYA) cancer survivors do not have a PCP. Study objectives were to increase the percentage of AYAs with a PCP documented in the electronic medical record (EMR) via the use of a best practice advisory (BPA) or “stopgap” intervention; to increase communication between providers by the number of routed clinic notes; and to assess oncology providers' attitudes/beliefs about the model and intervention. Methods: Data were collected for the 6 months before implementation of the BPA to determine the percentage of AYAs with a PCP and the number of notes routed to providers (time point 1 [T1]). The same data were collected at time point 2 (T2) after the BPA had been implemented for 6 months. Oncology providers participated in an education video module and an online survey at T1 and a survey at T2. Results: At T1, 47.1% of 756 AYAs had a documented PCP in the EMR. At T2, the percentage increased to 55.1% (P<.002). The number of routed notes did not change significantly from T1 to T2. Providers that completed the intervention survey agreed/strongly agreed that the shared-care model is a desirable model of care (T1 = 86%; T2 = 93%) and that a BPA is useful for facilitating PCP referrals (T1 = 76%; T2 = 39%). Conclusions: This BPA is feasible for increasing the percentage of AYAs with a PCP documented in the EMR and could potentially lead to increased PCP referral and communication among providers for the benefit of long-term survivorship care. Providers generally agree with the shared-care model; however, the BPA implementation requires modification.