This discussion covers changes in the provision of cancer genetic testing and screening in the United States since the passage of the 2010 Patient Protection and Affordable Care Act (ACA), with a focus on benefits for the marginalized. Similar reforms have been undertaken in European countries, e.g., federal subsidies combined with insurance carrier plan flexibility in Switzerland, and Germany’s offering of different healthcare options for low- and high-income individuals. In the United States, the uninsured rate dropped from 16.1% before the ACA’s passage to 9.6% in 2021. Medical claims databases (N > 50,000 women, both affected and unaffected) noted distinct increases in BRCA1/2 testing rates, e.g., up 68% from 2012 to 2014, the first year the state insurance Exchanges opened. BRCA1/2 test ordering cancellation rates due to a medical geneticist / genetic counselor authorization requirement were most pronounced for African American and Latino subscribers, however. From 2012 to 2015, annual colorectal cancer screening rates increased 1.29 per 1,200 Latino, and 0.58 per 100 non-Latino adults. However, as of 2016, the odds ratios for Lynch syndrome (hereditary nonpolyposis colorectal cancer) germline genetic testing for colorectal tumors were 0.65 for Latinos and 0.39 for African Americans compared to whites. Expansion of the Medicaid program covering low-income Americans has been beneficial to rural populations; impact on colorectal cancer screening rates for racial-ethnic minorities has been mixed.
Incorporation of policy recommendations from other professionally recognized sources beyond the U.S. Preventive Services Task Force – the National Comprehensive Cancer Network, Evaluation of Genomic Applications in Practice and Prevention (EGAPP), and Healthy People 2030 – needs to be considered in enlarging the ACA coverage criteria for hereditary breast and ovarian cancer and Lynch syndrome genetic testing and counseling. When addressing the needs of population groups, especially the underserved, progress in the adoption of clinical policy and governmental reform are complementary. Instances of recent state-level reform, e.g., refinement in criteria for Medicaid coverage of BRCA1/2 testing; continued expansion of state Medicaid programs; and the controversial adoption of Medicaid block grants by one state will be covered. The talk will conclude with the recent presidential proposal to develop fast-track testing to detect multiple cancer types simultaneously and to coordinate screenings with cancer treatment centers nationally – the cancer “moonshot” program.

Stephen M. Modell, M.D., M.S. has been the Research and Dissemination Activities Director of the Center for Public Health and Community Genomics at the University of Michigan School of Public Health since 2001. The Center promotes the integration of genomic discoveries into public health practice utilizing community input. Prior to his current position, he was research director in genetics policy for the Department of Health Management and Policy, University of Michigan School of Public Health. He has co-taught the Health Management and Policy course “Issues in Public Health Genetics” for more than 15 years, a course that links issues to policy for new and established genetic technologies. Dr. Modell served as chair of the American Public Health Association Genomics Forum Policy Committee from 2012-13. He was principal author of the 2013 APHA policy statement “Advancing Cancer Genomics in Public Health.” In 2021 he co-authored the chapter “Genetic Determinants of Health and Applications in Public Health and Preventive Medicine” for the 16th edition of Maxcy-Rosenau-Last Public Health & Preventive Medicine. Dr. Modell’s recent articles concern cancer genetic testing in marginalized groups in the context of healthcare reform, and cancer testing and screening for immigrant groups.