A proportional comparison of cancer burden and patient advocacy organization (PAO) funding by histology demonstrates many underfunded histologies.

Abstract

6606 Background: PAOs in oncology are vital in funding research for rare cancers, young investigators and innovative projects, but some histologies may be underfunded relative to their burden. This study examined the alignment of cancer burden by histology with PAO funding for each histology to raise awareness of areas of unmet need. Methods: The GuideStar database was used to find all cancer PAOs with > $5 million (M) in annual revenue (AR) using NTEE codes and 165 cancer-related search terms. Care delivery PAOs were excluded. PAOs were classified by the histology they support. AR was obtained from IRS Form 990s for each PAO. Total annual revenue (TAR) per histology was calculated by adding ARs for each PAO in that histology. Cancer burden based on annual incidence, deaths and person-years of life lost (PYLL) was obtained from SEER data. Comparison of TAR with incidence, deaths and PYLL of each histology was done using descriptive statistics. Results: 125 PAOs with TAR of $6.4 billion were included. 64 (51%) were histology agnostic. Cancers with the most PAOs were pediatric (14, 11%), breast (13, 10%), leukemia (4, 3%) and lung (4, 3%). There were no PAOs with AR > $5 M for esophageal, gastric, kidney or bladder cancers. Histology-agnostic PAOs had $5 billion (78%) of TAR. Cancers with largest TARs were breast ($460M, 7%), pediatric ($207M, 3%), leukemia ($201M, 3%) and lymphoma ($145M, 2%). The ratios of TAR by histology vs. incidence, deaths and PYLL are shown in Table 1. PAOs in pediatric cancer, breast cancer, leukemia and lymphoma had the highest ratios in all 3 metrics. Colon, liver and uterine cancer PAOs had the lowest ratios. Conclusions: Cancer PAOs generate substantial AR that complements government research funding. Cancer PAOs overall can be better funded, especially PAOs in GI, GU and gynecologic cancers to drive research and awareness. Breast Colon Uterine Leukemia Liver Lymphoma Lung Melanoma Ovary Pancreas Pediatric Prostate TAR (millions $) 460 18 5 201 6 145 92 14 23 58 207 76 TAR/Incidence ($) 1804 133 87 3241 115 1802 412 160 1012 1087 13,586 472 TAR/Deaths ($) 11,207 359 490 8219 185 6840 588 1433 1614 1354 115,901 2847 TAR/PYLL ($) 595 23 33 547 15 476 39 87 91 100 2255 278