November 2020 – Cancer While Black: Moving Past the Medical Mistrust Impact

The Tigerlily Foundation and Guiding Researchers and Advocates for Scientific Partnerships (GRASP) November conversation was co-hosted by keynote speaker, Mr. Shawn Johnson, a medical student in the Pathways M.D. program at Harvard Medical School, and our patient experts, La’Kesha Jackson-Gordon, LaTayla Palmer, Tova Parker, Na’Diah Smith and Temi Omaghomi.

Shawn Johnson presented on the role of institutions creating and supporting health disparities in structural racism. While the conversation tends to shift to a particular group, Shawn challenged the audience to place the focus on healthcare institutions. He described four types of racism: personal, interpersonal, institutional and structural.

Personal: private beliefs, prejudices & ideas that individuals have
Interpersonal: the expression of racism between individuals
Institutional: discriminatory treatment, policies & practices, within organizations & institutions
Structural: system in which public policies, institutional practices and other norms perpetuate racial group inequality

Mr. Johnson described the history of healthcare segregation in the United States highlighting the passage of medicare and medicaid in 1965. Civil Rights advocates traveled the country ensuring hospitals integrated and provided access to Black patients. Mr. Johnson explained how Black patients have been hypersegregated in low-quality, high-cost hospitals despite the Affordable Care Act. The data shared during his presentation showed how Black people have lacked the opportunity to receive high quality healthcare that is affordable, which has impacted many Black women with breast cancer vying for access to proper treatment options. Black patients have been shuttled into second tier healthcare systems for decades. For example, while 25% of Boston, MA residents are Black only 5% of patients at the Dana Farber Cancer Institute are Black compared to 50% at Boston Medical Center. New disparities are created daily because any socio-economic disparity is automatically a racial disparity. The cost of a cancer drug in 1975 was $120/month. The same cancer drug in 2015 was $10,000/month. Yes, breast cancer disparities are a civil rights issue.

LaTayla Palmer-Lewis, a transformational coach, expressed her concern that lives are being lost because healthcare professionals are not listening. Sharing a personal story of her younger sister’s journey, LaTayla explained the lengths her sister had to undergo in order to receive a mammogram despite an extensive family history of breast cancer. When LaTayla’s sister finally received her order for a mammogram, she was diagnosed with breast cancer.

Tova Parker, Founder of Pretty (sic), echoed that healthcare professionals need empathy for patients. Patients are more than a statistic. Tova Parker shared about being diagnosed at 41 with Stage III triple negative Invasive ductal carcinoma (IDC), with no family history or a genetic mutation. Tova started mammograms at 36 years old thanks to a physician that felt strongly that Black women should start earlier than the guidelines. When Tova moved to Texas she experienced a doctor that would cut her off when she would voice her concerns, Tova speaks about how she had to advocate for herself as a Black woman her entire life, so this was no different.

La’Kesha Jackson-Gordon, Founder of Pink Shoes, stated “I want to be seen as a person who will survive this disease”. She shared her challenges with health insurance impeding her progress by being forced to wait for her medication to be approved. She expressed that although insured, La’Kesha still had to pay a lot out of pocket expenses not covered by her health insurance. La’kesha described the burden on patients to find resources, follow up with insurance/physicians and advocate for themselves. Most places that take uninsured/underinsured patients don’t have navigators or offer help to patients to find resources or assist in personalized advocacy. With knowledge of systemic racism/inequities, makes it hard to trust what physicians tell you (or don’t tell you).

Na’Diah Smith, Founder of Pretty Fit Survivor, agreed and detailed the emotions shared by many patients between feeling overwhelmed and angry. She insisted that allies of different groups step up to the plate. No one group can tackle the healthcare institution alone. In order for change to take place, Na’Diah asked for groups to come together around this common goal. Na’Diah Smith stated that having a breast surgeon that was a woman of color positively impacted her journey as a breast cancer patient. The HCP became her advocate, but Na’Diah still had to do a lot of the legwork and research to make decisions about her treatments. Like most Black women, Na’Diah was never asked to participate in any clinical trials and she was not treated like someone who would survive breast cancer. Na’Diah brings up the fact that in Black communities there is a resistance and discomfort with talking about illness. How can we solve this?

Temi Omaghomi, a compliance analyst and aspiring genetic counselor, demanded more personalized care. “I had to be my own nurse. I had to be my own social worker. The healthcare providers could have helped with that” she said. Temi who is only 23 years old was diagnosed in 2020. Temi did not only struggle with treatment due to her race but also her age. Temi struggled with doctors not taking her seriously and emphasized that young women can get breast cancer as well. Temi fired two doctors while searching for a doctor who cared. Temi shared her own experience with therapy which has helped her emotionally. Her remarks remained a common thread throughout the conversation. It does not have to be.

Conversation Takeaways:

Patients should not have to fight against sub-par care while battling for their lives.

Allies need to help dismantle the institutional racism that exists within the healthcare system.

Resource Guide:

The role of senior leaders in building a race equity culture – Kerrien Suarez

The Power to Heal: Civil Rights, Medicare and the struggle to transform America’s healthcare system David Barton Smith

Concentration and quality of hospitals that care for elderly black patients. Ashish K Jha, E John Orav, Zhonghe Li and Arnold M Epstein