When it comes to breast cancer, the facts are clear. Minority women are often diagnosed at a younger age than nonminority patients, but at a later stage in the progression of the disease, at which point treatments are limited, costly, and the prognosis poor. Minority women are also at greater risk for more aggressive breast cancer, have a 39% recurrence rate, and are more likely to die, with a 40% higher mortality rate than nonminority patients.1
Because persons of color often do not have a seat at the decision-making table, they continue to face life-threatening injustices and inequities. These patients should be provided with timely, high-quality access to care since delays in diagnosis and treatment may be fatal. To improve outcomes in the treatment of breast cancer, it is important to have real-world input from non-white patients, who may not be doctors, but have a wealth of insight with a “PHD in cancer,” meaning a Personal History of Disease.
To address these disparities, Chuck Perou, PhD, Professor, Genetics, University of North Carolina Lineberger Comprehensive Cancer Center, Chapel Hill, co-hosted a session with Maimah Karmo, Founder and Chief Executive Officer, Tigerlily Foundation, a national breast cancer patient advocacy organization. Ms Karmo is a 14-year survivor of breast cancer, a first-generation immigrant, and the first black patient leader to co-host an opening special session at the San Antonio Breast Cancer Symposium. The goal of their talk was to create a transformational dialogue that may help overcome obstacles at every level of healthcare for people of color. This begins with providing better access throughout the healthcare continuum, including screening, genetic testing, and clinical trials.
Ms Karmo discussed how black and brown patients may not often be represented in clinical trials because there is deep-seated concern over medical abuse. In some cases, there is a high level of distrust of clinicians and/or the healthcare system in general, leading to minority patients being reluctant to volunteer or participate in these trials. However, access to some of the best medical care comes through being enrolled in a clinical trial.
To overcome these barriers and rebuild trust, partnerships with patient advocates of color are critical. Dr Perou discussed multiple factors impacting outcomes, including tumor biology, access to healthcare, and adherence to treatment recommendations. Inherent to all these challenges is the problem of reversing decades of systemic racism as it intersects with healthcare.
Several globally renowned scientists of color also spoke during this session, including Harvard Medical School student Shawn Johnson, who spoke broadly about the need to provide context and history when addressing disparity data; otherwise, harmful myths and misunderstandings are perpetuated. He also reinforced the need to recognize patients as subject matter experts, while addressing the lack of black and Hispanic participation in cancer clinical trials. Neha Goel, MD, Surgical Oncologist and Cancer Researcher, Sylvester Comprehensive Cancer Center, University of Miami Health System, FL, presented important research on racial and economic residential segregation, providing context on how extreme concentrations of economic poverty and privilege contribute to survival in South Florida.
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