Breast Cancer: Current Disparities in Care
Greater awareness, early diagnosis, and new treatments for breast cancer have decreased death rates by 40% over the last 30 years.1 However, not all groups of women have benefited equally. For example, mortality from breast cancer remains markedly higher in Black women compared to White women—twice as high for those under 50 years of age.1 Racial, ethnic, and socioeconomic disparities also exist in referrals for genetic counseling and testing for the 5% to 10% of women whose breast cancer is hereditary.2 Consequently, minority women and men at increased risk for breast cancer (see Sidebar) are less likely to be identified at an early stage of the disease and may experience a poorer prognosis than their White counterparts.
This article will discuss breast cancer, including how genetic testing can be used to assess risk for hereditary breast cancer. Disparities in screening, treatment, mortality, genetic counseling, and testing for minority patients will be discussed, as well as potential solutions.
Hereditary Breast Cancer and Genetic Factors
Variants in a number of genes increase the risk of breast cancer. Some inherited variants such as BRCA1 and BRCA2 (also known as the breast cancer susceptibility 1 and 2 genes) increase the risk of breast cancer, as well as ovarian, prostate, and pancreatic cancer,3 and account for 20% to 25% of hereditary breast cancers.4 Other genes with hereditary variants associated with breast cancer include ATM, BARD1, BRIP1, CDH1, CHEK2, NF1, PALB2, PTEN, RAD51C, RAD51D, STK11, and TP53.3
Professional organizations recommend that primary care providers assess whether women or men are at increased risk of having mutations in BRCA1 or BRCA2 based on personal or family history.2,3,5 The most recent United States Preventive Services Task Force (USPSTF) guidelines expanded the population that should be assessed based on personal or family history.6 The population now includes women considered cancer-free who have been previously treated for breast, ovarian, peritoneal, or tubal cancers.6 In addition, ancestry associated with BRCA1/2 (founder) gene mutations is more explicitly included as a risk factor.6
Tools to help assess risk include the National Cancer Institute Breast Cancer Risk Assessment Tool, commonly known as the Gail model (BCRiskTool.Cancer.gov). This model has been tested mainly among White women. Further study is required to validate the model in other subgroups. For example, the model has performed well in White women but may underestimate risk in Black women with previous biopsies and Hispanic women born outside the United States (BCriskTool.cancer.gov/about.html).
Disparities in Breast Cancer Treatment and Mortality
Black women,1 as well as Hispanic women,7 have higher death rates due to breast cancer than do their non-Hispanic White counterparts. The factors contributing to the survival disparity between races and ethnicities are undoubtedly complex and likely represent interplay between tumor biology, genomics, patterns of care, and socioeconomic factors.8
Analysis of over 11,000 women identified from the Surveillance, Epidemiology, and End Results (SEER)-Medicare database with invasive breast cancer diagnosed from 2006 to 2009 found that9
- Women whose socioeconomic status was defined as “poor” (those enrolled in Medicaid or a state buy-in program) or “near-poor” (those not enrolled in Medicaid or a state buy-in program, but ranked in the highest quartile of poverty) were less likely than women whose defined socioeconomic status (SES) was neither “poor” nor “near-poor” to receive sentinel lymph node biopsy and radiation after breast conserving surgery (BCS).
- Women whose SES was “poor” were less likely than other women to receive any axillary surgery and adjuvant chemotherapy.
- Women whose SES was “near-poor” who initiated hormonal therapy were more likely to rely exclusively on tamoxifen, and less likely to use the more expensive but more effective aromatase inhibitors, when compared to other women.
Disparities in Breast Cancer Genetic Counseling and Testing
Genetic counseling is a critical component of the cancer risk assessment. The National Comprehensive Cancer Network® (NCCN®) recommends that a genetic counselor, or a healthcare professional with experience in cancer genetics, provide counseling throughout the testing process.3 However, only 20% of high-risk breast cancer patients who meet national guidelines for genetic testing are referred for genetic testing, and testing rates are lower among racial and ethnic minorities, including Black women.8 An early study reported that Black non-Hispanic women meeting NCCN criteria for genetic testing for breast cancer risk are less likely than non-Hispanic White women to undergo testing.10 Subsequent studies have confirmed these disparities. Examples include
- Women diagnosed with invasive breast cancer at age 50 or younger:
- Black and Spanish-speaking Hispanic women were significantly less likely than non-Hispanic White women to discuss genetic testing with a healthcare provider.11
- Risk-reducing mastectomy rates (for women who were BRCA carriers) were significantly lower among Black women compared to Hispanic (69% vs 82%, P=.025) and non-Hispanic White women (69% vs 96%, P=.008) after controlling for key clinical and demographic variables.11
- Non-Hispanic Black women and Hispanic women were more likely to have advanced cancer at time of genetic testing compared to non-Hispanic women.12
- Of women with a BRCA1 or BRCA2 mutation, compared with all other ethnicities, non-Hispanic White women were more likely to undergo cancer screening and risk-reducing surgery (P=.04).12
- Black non-Hispanic women meeting select NCCN criteria for genetic counseling (breast cancer under age 50, or 2 primary breast cancers, or with triple-negative breast cancer under age 60) had significantly lower referral rates (76%) compared to non-Hispanic White women (93%) (P<.01).13
Few concrete solutions have been developed and implemented to address disparities in care, but some interventions have been suggested:
- Improved awareness and risk-perception, through family and patient-provider communication aimed at expanding testing in minority populations14
- Addressing language, racial and ethnic, educational, and socioeconomic barriers15
- Addressing lack of medical coverage, barriers to early detection and screening, more advanced stage of disease at diagnosis among minorities, and unequal access to improvements in cancer treatment for racial/ethnic minorities16
- Improving health insurance coverage in vulnerable groups17
- Using “big data” as a research opportunity to improve minority health and reduce health disparities—the unique methods associated with big data collection and analyses may help identify reasons for disparities in healthcare and subsequently provide unique solutions18
Effect of the COVID-19 Pandemic
The National Breast and Cervical Cancer Early Detection Program (NBCCEDP) provides cancer screening services to women with low income and inadequate health insurance.19 A study showed that the total number of NBCCEDP-funded breast cancer screening tests declined by 87% during April 2020 compared with the previous 5-year averages for that month.19 The greatest declines were among American Indian/Alaskan Native women for breast cancer screening (98%). Similar results were noted for cervical cancer screening.