The Tigerlily Foundation and Guiding Researchers and Advocates for Scientific Partnerships (GRASP) October conversation was co-hosted by keynote speaker, Dr. Tisha M. Felder, a Research Assistant Professor at the College of Nursing and Core Faculty on Cancer Prevention and Control Program at the University of South Carolina, and our Black patient experts, Patricia Fox, Tonya Hicks, Aliya Whipple and Joy Jenrette. The panelists focused on what it means to have “Cancer While Black: How Trauma, Fear, Generational Pain & Mistrust Impact Breast Cancer.”
“Cancer while black” is a metaphor for what it means to live while Black in America carrying the historical trauma of systemic and structural racism across generations. Dr. Felder explained the historical trauma that has led to the modern day reckoning of historical and cultural racism in medicine and health care. She shared research studies that described the stark differences between how Black people feel about their reality compared to White perception of daily life as a Black-American. Almost 60% of Blacks feel they are treated less fairly while receiving medical health treatment compared to only 26% of White persons. Dr. Felder went on to share that in her life everything is filtered through race. She is seen first as Black then a scientist.
A striking statistic from Dr. Felder’s presentation was the notion that there wasn’t always a mortality gap between various racial groups of women with breast cancer. The increased mortality rate for Black women occurred while there were numerous advances in breast cancer treatment in the 1980s. Why would the mortality rate increase with medical advances? Black women were and have not received the same care as their White counterparts. The unequal treatment has led to the loss of countless lives. This naturally flowed into the historical generational pain and trauma of oppression. Within the human body, this trauma and pain is stored as allostatic loads (AL). AL is the physiologic burden of chronic stress that can negatively impact health at the cellular or biological levels. Higher levels of AL have been associated with increased risk of cancer specific mortality among Blacks and Whites.
Another topic which resonated with audience members was the “Superwoman Schema”. The strong Black Woman role and its impact on personal stress levels. Dr. Felder urged the medical community to stop asking why Black patients should trust medical/healthcare but why do Black patient’s mistrust medical/healthcare.
Patricia Fox, author of “Declarations Statements of Healing For Women Braving Dis-ease and Tigerlily Angel Recruiter and Outreach Manager, stressed it is important to have no biases for age and race. There is a pathology of not just DNA but a pathology of generational experience that must be explored.
Tonya Hicks, business owner and Angel Advocate, advised patients to know your family history and get genetic testing.
Aliya Whipple, experienced computer operator, Triple-Negative Breast Cancer and BRCA2+ Thriver, recommended personalized care that takes into account the patient’s lived experience. She described her personal experience as not by the book.
Joy Jenrette, an Atlanta-based lawyer, shared the importance of a support system and complete information on understanding the diagnosis.
- Provider Education
- Understand the history of racism and violence within the American medical and research systems
- Engage and educate providers on Black women’s views of medical mistrust to address modifiable provider level factors that may ease or diminish such feelings (Sutton et al, 2019)
- Train, recruit and retain providers from diverse backgrounds
- Integrate Black patients/patient experts into the leadership structure of the care environment
- Additional work on AL and epigenetic on breast cancer in Black women
- Integrate patient expertise into research protocols
- Be accurate and give the most accurate information about a patient’s diagnosis
- Make sure your patient is aware of ALL genetic testing, clinical trials and treatment options available to them.
- Women are not advised to get a mammogram until they are 40 years old, but if you have a family history of breast cancer, it is extremely important that you get your mammograms before the age of 40 and also the importance of getting the genetic testing as well.
- Bring a journal to appointments. Take note of doctor’s names and other key information.
- Get a second opinion when the doctor is looking at the case from a different perspective.
- Research doctor referrals.
- During genetic testing, look at maternal and paternal sides of your family that could possibly have a history of breast cancer.
- Medicine is constantly changing and advancing. Document experiences with various medications to share with providers. Ask about new medical advances or treatment options.
- Pew Research Center 2019 Race in America by Juliana Menasce, Anna Brown and Kiana Cox
- National Cancer Institute stats on mortality rate over time
- Healthcare System Distrust and the breast cancer continuum of care – Morgane C. Mouslim, Renee M. Johnson and Lorraine T. Dean
- Association of Allostatic Load with All Cause and Cancer Mortality by Race and Body Mass Index in the REGARDS Cohort – by Tomi Akinyemiju, Lauren E Wilson, April Deveaux, Stella Aslibekyan, Mary Cushman, Susan Gilchrist, Monika Safford, Suzanne Judd, and Virginia Howard
- Prediagnostic Allostatic Load as. Predictor of Poorly Differentiated and larger Sized Breast Cancers among Black Women in the Women’s Circle of Health Follow Up Study- Cathleen Y. Xing, Michelle Doose, Bo Qin, Yong Lin, Jesse J. Plascak, Coral Omene, Chunyan He, Kitaw Demissie, Chi-Chen Hong, Elisa V. Bandera and Adana A.M. Llanos
- Racial discrimination, the superwoman schema allostatic load – Amani M. Allen, Yijie Wang David H. Chae Melisa M. Price Wizdom Powell Teneka C. Steed Angela Rose Black Firdaus S. Dhabhar Leticia Marquez?Magaña Cheryl L. Woods?Giscombe
- On Racism: A New Standard For Publishing On Racial Health Inequities – by Rhea W. Boyd, Edwin G. Lindo, Lachelle D. Weeks and Monica R. McLemore
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