This narrative, inspired by real-world experiences, sheds light on the healthcare disparities women of color face—especially in breast cancer and maternal health.
Keisha sat nervously in the clinic waiting room, gripping her sister Maya’s hand. Maya, just 34, had been diagnosed with breast cancer, turning both of their worlds upside down. At the same time, Keisha was navigating the complexities of pregnancy as a Black woman, fully aware that she was part of a demographic facing some of the highest maternal mortality rates in the U.S.
Though their stories are fictional, they mirror the harsh realities experienced by many women in underrepresented communities. Black women are 38% more likely to die from breast cancer than White women, and maternal mortality among Black women is three times higher than for their White counterparts. These disparities highlight the failures of a healthcare system that hasn't addressed the unique needs of Black and Brown women.
Advocacy and Need for Representation in Healthcare
At her prenatal visits, Keisha often felt her concerns dismissed. “It’s normal,” the doctor said when she expressed fears about excessive swelling and discomfort. Keisha’s worries deepened when her doctor brushed off her concerns, saying, “It’s normal.” But she knew her body and felt that something was off. Meanwhile, her sister Maya was starting her breast cancer treatment and grappling with feelings of isolation, frustration, and fear.
Their dual journeys, one with cancer and the other through pregnancy, illustrate the complex challenges many women of color face navigating a healthcare system that historically overlooks their needs. The stories of women like Keisha and Maya reflect the systemic disparities in care that lead to higher mortality rates among Black women, both in maternal health and breast cancer outcomes.
The Power of Advocacy and the Role of Community
For Keisha, having an advocate was life-changing. She connected with a local doula through the Black Coalition for Safe Motherhood’s (BCSFM) ACTT program, which trains supporters and families to ask critical questions, advocate for person-centered care, and hold providers accountable. The ACTT curriculum encourages birthing people and advocates to challenge dismissive care by asking, “Can you explain that more clearly?” or, “What other options do I have?” This empowerment transformed Keisha’s experience and made her feel seen and heard by her care team.
Maya, however, struggled without similar support in her cancer journey. Clinical trials—critical to advancing treatments—rarely reached people like her. Black women represent only 3% of participants in clinical trials, limiting the effectiveness of new therapies for her community. It became clear to both sisters that without diverse representation, the healthcare system couldn’t adequately serve them or others from underrepresented backgrounds.
Bridging the Gaps through Clinical Research and Advocacy
This is where PEP!IN steps in, using the EMBRACE methodology to foster partnerships between healthcare providers, research institutions, and the community. EMBRACE ensures that patients, advocates, and researchers collaborate throughout the clinical trial process, addressing barriers to participation at every level—from recruitment to retention. With PEP!IN's high-touch and high-tech engagement strategies, we aim to connect patients like Maya to research opportunities while ensuring those in maternal care, like Keisha, receive the advocacy and support they need.
Keisha’s doula, trained through the ACTT program, not only accompanied her to appointments but also ensured that she asked the right questions and made informed decisions. Together, they navigated prenatal care, reducing the risks of complications. Advocates like Keisha’s doula demonstrate how culturally competent support can bridge the gaps in healthcare access and outcomes for marginalized communities.
For Maya, PEP!IN’s efforts would mean expanding access to clinical research, ensuring research is inclusive and responsive to the needs of underrepresented populations. Through partnerships with healthcare providers and community organizations, the goal is to recruit more diverse participants, ultimately leading to more effective, life-saving treatments.
Bridging the Gaps through Clinical Research and Advocacy
Keisha and Maya’s stories show that better health outcomes are possible—but only if patients, providers, researchers, and communities come together to address the disparities head-on. Clinical trials must reflect the diversity of the populations they aim to serve, and advocacy is crucial to ensuring equitable care.
PEP!IN, in partnership with BCSFM, believes in the power of education, empowerment, and engagement. Their vision goes beyond recruitment; it is about building trust, fostering long-term relationships, and equipping patients and advocates with the tools they need to navigate the system. Through intentional partnerships with community-based organizations, healthcare providers, and research institutions, we aim to drive sustainable change.
Bridging the Gaps through Clinical Research and Advocacy
The solution is clear: we must listen to and elevate the voices of those most affected by these disparities. We need research that reflects the real-world experiences of women like Maya and Keisha. We must equip supporters—doulas, midwives, fathers, partners, and community members—with the training and tools to advocate effectively. Only then can we begin to close the gaps in care, improve health outcomes, and ensure that every person receives the care and respect they deserve.
Through collaboration, engagement, and relentless advocacy, PEP!IN and BCSFM aim to break down the barriers that perpetuate disparities in clinical research and healthcare. The road is long, but with every question asked, every story shared, and every trial made more inclusive, we move closer to a future where healthcare serves all equally.
This Breast Cancer Awareness Month, let’s commit to creating that future—together.
Sources:
National Institutes of Health (NIH). "Diversity and Inclusion in Clinical Trials."
American Cancer Society: Breast Cancer Facts & Figures 2024-2025
Breast Cancer Research Foundation: Understanding Breast Cancer Racial Disparities
BCSFM's ACTT Program Materials.
American Cancer Society. "Cancer Care Lags for Hispanic People in the U.S."
ASCO. "Racial and Ethnic Disparities in Breast Cancer Outcomes."
Disclaimer: The content provided on this website is for informational purposes only and is not intended as medical advice or a diagnosis, For more, read our full disclaimer.
Comments