A newly released policy brief from the Tigerlily Foundation reveals egregious disparities in screening and diagnosis for Triple Negative Breast Cancer (TNBC) – the most aggressive form of breast cancer that disproportionately affects minority communities and is diagnosed more frequently in younger women and women of color – and offers urgently needed policy solutions to address them.
"Even as breast cancer awareness month concludes, this new policy brief sounds the alarm that we can't wind down. Disparities in the screening and diagnosis of Triple Negative Breast Cancer - the most aggressive form - are dire and require significant policy actions in response," said Maimah Karmo, Founder and CEO of the Tigerlily Foundation, a national breast cancer foundation which seeks to educate and empower women of all backgrounds, including those at heightened risk, those facing health disparities, and those with less access to care.
The policy brief, Disparities in Screening and Diagnosis for Triple Negative Breast Cancer, most notably found that clear disparities in age of, time to, and stage of diagnosis exist between racial and ethnic groups in TNBC.
Specific findings of the brief, which was co-authored by Charles Rivers Associates, included:
- Women under the age of 40 are more likely to be diagnosed with TNBC than any other breast cancer subtype with 23 percent of breast cancer cases in black women occurring before the age of 50 as compared to only 16 percent in white women.
- Black women were found to have a significantly longer time delay from diagnosis to treatment compared with white women (61 versus 43 days, respectively).
- Black and Hispanic women are more often diagnosed with more advanced stages of TNBC that have spread beyond the breast and/or with metastasis.
In response to these findings, the brief recommends several specific policy actions, including:
- Developing culturally and linguistically tailored patient education necessary to support patient awareness of screening and genetic and genomic testing
- Including TNBC high-risk underserved populations in screening guidelines (such as the United States Preventive Services Task Force).
- Updating clinical guidelines to support evidence-based risk assessment and referral of patients for genetic counselling and testing.
"Because TNBC is aggressive, it is often diagnosed at later stages and presents a higher chance of becoming metastatic than other types of breast cancer. Women with TNBC can't wait, and the policy changes recommended in this brief are needed now. Collaboration with all concerned stakeholders - including policymakers - is essential to advancing the outlined policy recommendation to improve the quality of life and long-term survival of all women affected by TNBC," said Karmo.
Karmo added that effective treatment for TNBC can't begin until women navigate the often long and complicated screening and diagnostic journey, which is further exacerbated by disparities and bias that exists in our health care system and that the policy brief confirmed. "Unfortunately, many women, especially those from low-income areas and communities of color, face significant disparities in obtaining screening and diagnostic services. Women encounter challenges with availability, such as access to state-of-the art technology and well-trained medical staff at a location convenient to them. Women also experience barriers to appropriate and timely screening and diagnostic resources due to a lack of affordability, which is linked to insurance status, coverage decisions and patient cost-sharing."
While breast cancer is the most common cancer in the United States, Triple Negative Breast Cancer (TNBC) is the most aggressive form and accounts for up to 20% of all breast cancers. Current screening and diagnostic practices for breast cancer, which are predominantly focused on women over 40 years of age, put women with TNBC at a disadvantage from the start. Because women with TNBC are typically younger and often lack a family history of breast cancer, these women often face an uphill battle simply trying to get an initial mammogram.
Black women are twice as likely to be diagnosed with TNBC than non-Hispanic white women (21 percent vs. 10 percent of breast cancer diagnoses are the TNBC subtype), and Hispanic women also face a higher distribution of the TNBC subtype than white women (12 percent vs. 10 percent). Black and Hispanic women are not only at higher risk for TNBC compared to Non-Hispanic white women, but they also tend to receive a greater proportion of diagnoses at advanced stages of the disease, making it more difficult to receive effective treatment, which increases the chances of metastases and lowers survival rates.