Breast cancer is the second most frequently diagnosed cancer among women in the United States, and the second leading cause of death in women after lung cancer [22]. Though white women have historically displayed higher breast cancer incidence rates than African American women, these rates converged in 2012 [23]. The incidence in Latina women has remained lower than in white women, yet Latinas are more likely to be diagnosed at a younger age and more advanced stage [24].

Women at higher risk of breast cancer, as recommended by a provider, may benefit from beginning screening in their 40s [15,26]. Title I., Sec. 2713 of the ACA, dealing with quality, affordable healthcare, addresses breast cancer screening and mammography as a covered service, while Title IV., Sec. 4106, dealing with preventive services for adults eligible for Medicaid, amends the Social Security Act to include clinical preventive services that are assigned a grade of A or B by the USPSTF [4]. These ratings apply to services where high certainty exists that the net benefit is substantial to moderate. Women on Medicaid in expansion states are entitled to the same screening and preventive services as those who are covered by private insurance or in group plans.

Prior to the ACA, most states required copayments for preventive services from adult Medicaid enrollees. Cost-sharing was typically low, but was on the rise in some states. In a 2003 sample of states being examined for Medicaid copayment policies in breast and cervical cancer screening, 12 states had no copayments, 24 states required copayments, and two states waived their requirement for copayments [31]. Women with copayments for preventive services were less likely to receive a screening mammogram than those without a copayment. A study examining 2006–2008 Medicaid claims data from 44 states found that African American women were significantly less likely than white women to undergo mammography in 30% to 39% of the states analyzed (OR = 0.85 in 13 states, 95% CI: 0.60–0.93) [32]. Latina (OR = 1.43 in 24 states, 95% CI: 1.08–2.04) and Asian American women were the minority groups most likely to receive screening compared to whites.

In the post-ACA period, a 2015 survey found that six states remained with classic Medicaid, 11 states had adopted traditional Medicaid expansion, and 23 states had secured a family planning waiver or state plan amendment (alternative pathways) (10 states excluded) [33]. That same year, the Kaiser Family Foundation reported that 58% of women with Medicaid coverage had taken a mammogram in the previous two years, in contrast to only 30% of uninsured women between ages 40 and 64, and 72% of privately insured women [25]. A 2021 systematic review of 21 select articles on Medicaid expansion status by Nathan et al. indicated that 15 of the articles reported relatively higher cancer screening rates and/or earlier stage of diagnosis in expansion states, with an average increase in screening rates of 4.6% [34]. Only 2 of the 15 articles reviewed focused on breast cancer, though. A year earlier, Moss et al. published a systematic review of 48 studies, eight of which pertained to breast cancer [35]. The outlook was more critical—most of the studies concluded that Medicaid expansion was not associated with increased access to mammograms.

The first full year of Medicaid expansion has been accompanied by reports of earlier cancer diagnosis. Studies comparing 2010 to 2014 data by utilizing population-based cancer registry and SEER data detected increases in early-stage (stages I and II) diagnosis for all cancers combined of 0.8% to 9.14%, respectively, while non-expansion states showed no such increase [17,36,37]. For breast cancer specifically, the population-based registry study detected a 0.9% increase in early-stage diagnosis for expansion states, compared to 0.4% for non-expansion states, while a cancer registry study in Kentucky (which underwent expansion in 2014) found a 2.2% increase (p = 0.002) [17,38]. These findings must be viewed cautiously—one of the studies also looking at 2015 and 2016 data reported a decline in both magnitude and statistical significance in early-stage diagnoses, which it attributed to drainage of pent-up patient demand [36].

A Behavioral Risk Factor Surveillance System (BRFSS) study of women aged 50–74 years found significantly lower breast cancer screening rates in non-expansion than expansion states for non-Appalachian states (2011 to 2015) (RR = 0.95, 95% CI: 0.95–0.96) [40]. Likewise, white and Latina women displayed higher screening rates in non-Appalachian expansion than non-expansion states (rate differences of at least 3.4%), though differences were minimal for African Americans in non-Appalachian states and all groups in Appalachian states. These findings suggest a continued benefit for Latina women in breast cancer screening, together with the persistence of group-specific disparities for African Americans, most prominent because rural Appalachia leads the rest of rural America in its growing African American population [41].

Hereditary breast and ovarian cancer (HBOC) associated with BRCA1 and BRCA2 mutations is the most common form of hereditary breast cancer. A 2015 population-based study of 396 African American women diagnosed with breast cancer before age 50 found that 12% of the study participants had BRCA1/2 mutations, more than double what was found in white women [42].

In 2005, the USPSTF recommended that women whose family history may be associated with an increased risk for deleterious BRCA1/2 mutations be referred for genetic counseling and evaluation for BRCA testing [43]. Through time, the Centers for Medicare and Medicaid Services and other federal health agencies have issued clarifications broadening the criteria for coverage [44].

A case study of select large private and public payers prior to the ACA found that few payers had detailed eligibility criteria for HBOC genetic counseling [45]. Medicaid programs in Arizona, California, and New York did not cover BRCA testing. Illinois’ Medicaid program covered HBOC genetic counseling and testing, but lacked clearcut eligibility criteria. In Michigan, in 2008, only four of 24 health plans had written policies aligned with the USPSTF recommendations [46]. Currently, a number of states are shifting or have moved their Medicaid patients into managed care. It is to be noted that a study by Levy et al. using a national sample of 2004–2007 medical claims and insurance-related administrative data found that health maintenance organization (HMO) enrollees were significantly less likely than those enrolled in point-of-service insurance plans to receive BRCA1/2 testing (hazard ratio (HR) = 0.73, 95% CI: 0.54–0.99) [47]. A 2005 hospital-based study at the University of Pennsylvania of 408 women with a family history of breast or ovarian cancer found, after adjustment for socioeconomic factors, that African American women were much less likely (OR = 0.28, 95% CI: 0.09–0.89) to undergo genetic counseling for BRCA1/2 mutations than white women [48].

Facing Our Risk of Cancer Empowered (FORCE) reports that currently all but one state’s Medicaid programs cover BRCA genetic counseling and testing (North Carolina, initiated in mid-2021) [49,50], a vast shift from the pre-ACA environment, although some follow the Medicare model, only testing those diagnosed with cancer. Only Alabama does not cover genetic testing for hereditary cancer risk. Rhode Island’s Medicaid program focuses on BRCA coverage only for those in its managed care programs. A 2020 analysis of an all-payer claims database in Massachusetts noted an increase in mean monthly BRCA1/2 tests per 100,000 Medicaid-insured women from 3.7 in 2011 to 14.7 in 2015 [51]. On average, BRCA1/2 testing rates increased at a similar rate for both privately and Medicaid-insured women. In 2014, with the start of traditional Medicaid expansion, New York State issued criteria for coverage of BRCA testing in Medicaid recipients [52]. Despite the revision, a study of 3055 predominantly low-income Latina women who had undergone screening mammography between 2014 and 2016 at a Columbia University medical center in Washington Heights, New York City revealed persistent underutilization [53]. Twelve percent of the women met family history criteria for BRCA1/2 testing, yet <5% had previously undergone testing.

In our previous piece published in 2021 [20], we outlined how the USPSTF recommendations—thus, the set of benefits offered by the ACA—leave out coverage of male breast cancer, which results in 2350 new cases and 400 deaths per year [54]. In 8828 male breast cancer patients diagnosed between 1998 and 2006 identified by the National Cancer Database, only 3.24% of cases were enrolled in Medicaid [55]. More recent data were not identified, but, given that male breast cancer, which is associated with BRCA mutations, is not covered by the ACA, policy revision is called for. BRCA2 mutations have been identified in men with high-grade, aggressive prostate cancer [56], and ACA coverage of prostate cancer screening has led to an observed 3% increase in screening among men, less than 138% of the FPL in early expansion states [57]. African Americans and Latinos shared in this increase. The National Comprehensive Cancer Network (NCCN) Genetic/Familial High-Risk Assessment Guidelines address BRCA1/2 genetic counseling and testing criteria in at-risk males [58]. The majority of state Medicaid plans have HBOC policies that adhere to NCCN criteria, but Medicaid concordance rates in a related area, anticancer therapy, have been noted to be around 47.5%, with less concordance for African American and Latino prostate cancer treatment [59]. The truth for male BRCA1/2 genetic counseling and testing coverage may lie in between given USPTF’s conservative stance on another test—prostate-specific antigen [60].

Colorectal cancer (CRC) is the second most frequent cause of cancer-related death in the United States and globally [61]. African Americans have the highest colorectal cancer incidence among all racial-ethnic groups, with nearly 20,000 new cases identified in 2019 [62]. Though Latinos have a lower CRC incidence than whites, it is less likely to be localized at time of diagnosis. Declines in CRC incidence rates have historically occurred later in Latino than white populations [24].

The USPSTF recommends screening for colorectal cancer in all adults aged 50 to 75 years as an A recommendation and in adults aged 45–49 years as a B recommendation. The decision to offer screening to adults aged 76 to 85 years depends on the clinician [28]. Though the essential health benefits section of the ACA does not address CRC specifically, the ACA HealthCare.gov website “Preventive health services” does [15]. In accordance with USPSTF recommendations, a payer may not impose cost-sharing with respect to screening for colorectal cancer or polyp removal performed as part of a screening procedure. More frequent use of colonoscopy for high-risk surveillance is outside of the scope of the USPSTF recommendations.

Based on Medical Expenditure Panel Survey data, a nationally representative survey of the non-institutionalized population, the average annual CRC screening prevalence from the pre-ACA period, 2007–2011, was 22 per 100 adults [63]. Screening rates decreased annually for non-Latino individuals by −0.38 per 100 adults per year but remained level for Latinos. From 2012 to 2015, screening rates increased for both groups; when screening rates were averaged, the above rate converted to 0.20 per 100 adults per year for non-Latino individuals, while the rate for Latinos remained even.

In the systematic review by Moss et al., CRC screening increased in eight studies and remained the same in two studies following expansion [35]. Kentucky displayed the largest increase, 27.7%, following expansion. Two separate research teams examining 2012, 2014, and 2016 BRFSS data found CRC screening rates increasing by 7.2–8.8% in very early expansion states, 2.9–3.9% in early expansion states, 2.4–2.7% in late expansion states, and 3.8% (one study) in non-expansion states [7,64]. Both studies reported that rate changes in the very early expansion states achieved the greatest level of statistical significance. The study by Fedewa et al., which looked at both breast and colorectal cancer, attributed this statistical effect to increased insurance coverage through Medicaid early on, since having insurance is a strong predictor of CRC screening [7]. The noted difference in screening rate changes between the various Medicaid expansion periods could explain why the studies included in the systematic review did not yield the same conclusion—the investigative teams might have been looking at differing time intervals. One study performing simulation modeling on a state that has not yet expanded Medicaid—North Carolina—calculated that Medicaid expansion would have prevented 7.1–25.5 instances of CRC per 100,000 cases in African Americans, and 4.1–16.4 instances per 100,000 in white individuals [65]. In addition to the above rate comparison studies, one study examining National Cancer Database data for 2011–2012 and 2015–2016 found that Medicaid expansion was associated with an increase in stage I CRC diagnoses (p = 0.035) [66].

During early Medicaid expansion, various teams explored those factors predisposing to the initiation of CRC screening in new Medicaid enrollees. Two studies identified a Latino background as increasing the likelihood of screening [6,67]; two cited urban residence as a significant factor [67,68]. In the study by Zerhouni et al. looking at early expansion, expansion, and non-expansion states, Latinos experienced a 6.5% increase and African Americans an 8.1% increase in those receiving CRC screening between 2012 and 2016, though, in comparing early expansion to non-expansion states, the rise was only statistically significant for African Americans (p = 0.045) [64]. African Americans were found to be more likely to have undergone CRC screening than whites (OR = 1.08, 95% CI: 1.03–1.14).

Hereditary nonpolyposis colorectal cancer (Lynch syndrome—LS) is the most common hereditary form of CRC. It is also a very pernicious form—polyps can progress to the cancerous state in just 30 months, compared to 10 or more years for other CRC polyps [69]. Accordingly, the NCCN High-Risk Assessment Guidelines address Lynch syndrome evaluation criteria and testing strategies [70]. Healthy People 2030 lists increasing the proportion of people with CRC who are tested for LS as a research objective and high-priority public health issue [71]. The Centers for Disease Control and Prevention consider HBOC and LS as Tier 1 conditions, applications for which the base of collected evidence on clinical validity and utility supports implementation into practice [72]. The Evaluation of Genomic Applications in Practice and Prevention (EGAPP) Working Group found sufficient evidence to recommend offering genetic testing for LS to all individuals with newly diagnosed CRC [73]. However, because they are prevention-oriented and focused on the general population, the USPSTF recommendations apply only “to asymptomatic adults 45 years or older who are at average risk of colorectal cancer,” excluding individuals who are at a high lifetime risk, such as for Lynch syndrome and familial adenomatous polyposis [28]. This omission is based on mission definition rather than level of evidence, and does not preclude the value gained from conducting LS genetic testing and screening in those at risk.

At the suggestion of FORCE, in December 2021, the USPSTF agreed to reconsider coverage of genetic testing for Lynch syndrome. FORCE reports that, nevertheless, the majority of state Medicaid programs do cover testing for LS (MLH1, MSH2, PMS2, or EPCAM mutations) [49]. Currently, six states’ Medicaid programs do not cover genetic counseling or testing for LS; limited or questionable coverage exists in two states. Two studies collected reflect the period before early Medicaid expansion. A study looking at the National Cancer Database for patients undergoing mismatch repair (MMR) deficiency testing diagnosed with CRC between 2010 and 2012 found early-stage disease to be positively associated with testing, and Medicaid, Medicare, or uninsured status to be associated with underuse of MMR deficiency testing [74]. A population-based study of 274 Louisiana Tumor Registry CRC patients from 2011 found that a medical facility’s being located in a rural area (OR = 0.49, 95% CI: 0.21–1.12) or being a public hospital (OR = 0.17, 95% CI: 0.04–0.77) is a statistically significant barrier to receiving LS genetic testing. The investigators concluded, “Low testing rates at public facilities highlight important issues in health-care delivery. Patients seen at these institutions may lack health insurance and/or hospital funding for specialized testing may be limited” [75].

Another tumor registry study, in the post-ACA period, covered samples collected between 2012 and 2016 from 767 CRC patients of diverse background in four academic medical centers [76]. Minority patients were significantly less likely (p = 0.02) to be referred for genetic evaluation than white patients. MMR testing rates were also lower (Latinos 3.1%; African Americans 6.0%; whites 10.7%; p < 0.01). African American and Latino patients were more likely than white patients to be on Medicaid or uninsured. African American race was also independently associated with a lack of referral for genetic evaluation and testing on multivariate analysis. The screening experience was quite different for 276 endometrial cancer patients evaluated for LS mutations in a large public safety-net hospital in Miami, FL between 2014 and 2016 [77]. Medical records’ immunohistochemistry (IHC, indicating likelihood of LS mutations) results were obtained for all patients treated for endometrial cancer during this time period, 79.3% of the patients being of a racial or ethnic minority background. Women of Latina ethnicity were most likely to be screened for LS (p = 0.006), but race did not affect the performance of screening (p = 0.47). In this setting, Medicaid and uninsured patients were more likely at initial treatment to be screened than patients with private insurance (p = 0.011).