For women of color facing breast cancer diagnoses, making decisions is a precarious balancing act, a process with significant implications across healthcare and society.
Diagnosis tends to occur at a younger age (that is, before 40, when many screening programs become available). They are often the heads of their households and the breadwinners working hourly-wage jobs; many are single, and also caring for their own parents and/or children while they manage their treatment. The impact of diagnosis and treatment is tremendous.
In the worst-case scenario, we see that according to the American Cancer Society, although deaths from female breast cancer have dropped over the past three decades, Black women are dying from the disease at a rate 40% higher than White women, even though Black women have a slightly lower likelihood of getting breast cancer in the first place.
In clinical trials, women of color are grievously underrepresented. They make up between two to six percent of participants, despite the fact that 40% of the US population identifies as non-white. Add to this that with timely access to care, we can estimate that cancer deaths could be reduced by up to a third.
Access to care is problematic as well: long before the ongoing global pandemic, many researchers and healthcare activists demonstrated how lower-income and racialized neighborhoods contained fewer breast imaging centers, less access to accredited cancer programs, and fewer comprehensive cancer screening centers.
We know that lower-income earners and women of color receive poorer quality mammography, often struggle to be referred for further examination and care, and as a result, often don’t receive a diagnosis until they are in later (and more complicated to treat) stages of the disease.
Ultimately, improving access to timely and quality care needs to be everyone’s cause, not just a cause championed by the people most affected. For the most part, as a group, our breast cancer community has been talking a lot about this problem. It’s time to move from awareness to action. The first step is to rethink and change how we approach care and treatment.
Funding for clinical research to fight poverty
Women of color are in desperate need of more resources such as funding for medical objectives, like research, or to help patients afford treatment. But those resources may be a moot point if the money needed to take time off work, get to treatment, or even have lunch in the hospital cafeteria during a full day of infusion isn’t there. We know that one in twenty Black and Hispanic women facing breast cancer end up losing their homes due to the financial impacts of treatment. Even parking is a privilege, when it can end up costing up to $1,400 a year. We need to do a better job of contributing to communities and organizations that can help, as well as systemic or legislative change that aims to reduce this pain across all areas of life.
Patient support that goes deeper than medicine
These social determinants are some of the barriers that keep women from care, but they are often not issues that care teams are traditionally trained to ask about. That’s why many practitioners are learning to ask more questions to better understand the different socioeconomic factors that are going to affect someone’s ability to stick to their treatment plan. While training and transparency around the biases we carry are important, to reach solutions, it is important to track and demonstrate results.
Research and representation
Healthcare outcomes for low-income, racialized, and gender marginalized people will not improve until research and resources reflect their underrepresented experiences in the health care sector. We know that inclusive research can change health care outcomes for the better. Similarly, we need to see better representation from diverse backgrounds in the medical professions. Patients are more likely to speak with someone who understands their unique medical, cultural, and spiritual needs.
Respect for a patient’s experience
Through my guests on my weekly Facebook broadcast, “Breast Practices,” I have learned that a patient’s experience is as important as the treatment itself, a point often made by the women I have met who want to help ease the path for future patients. They share their very personal experiences, support, and knowledge. Patients have an expertise that is absolutely vital to improving health care and I am grateful for all I have learned from the people living with cancer. Join them in groups like For the Breast of Us and organizations like the Tigerlily Foundation.
Fazila Seker is passionate about women’s health and social disparity issues within health care. She hosts “Breast Practices,” a Facebook Live broadcast focused on advocacy for physicians and patients. She is CEO and co-founder of MOLLI Surgical, a company that develops devices to guide precision surgeries for a better patient experience.
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