We are excited to share this much-needed conversation on Instagram about demystifying the breast cancer survivorship journey. One of the biggest myths about survivorship is that life can return to normal after cancer, and challenges can be quickly dealt with. Keisha and Maricia amplified this conversation on their social media connections with the Tigerlily Foundation to detail key issues experienced in survivorship that are rarely discussed.
Read more to learn about some insights, reflections, and opinions of patient advocates who attended SABCS. We’re sharing a little about each Tigerlily ANGEL Advocate, their story, and why they decided to participate in SABCS 2021.
Erin Perkins was diagnosed January 28th, 2021, at age 34 with invasive ductal carcinoma Stage 2B while nursing her son. She was also triple-negative. Triple Negative Breast Cancer (TNBC) is one of the most aggressive types of breast cancer, and is diagnosed often in younger Black women. In spite of the diagnosis and the treatment she faced, while undergoing sixteen chemotherapy infusions and a bilateral mastectomy, Erin knew that she wanted to learn more about breast cancer and be a voice for other patients.
Advocacy is in Erin’s heart—through and through. And it has been, even prior to her breast cancer diagnosis. Erin’s advocacy is woven deep into the fiber of her being and she leverages her power and her privilege through her voice. Erin attended multiple sessions on the first day of SABCS, one of which was Trust in Science and Healthcare: Diversity In Clinical Trials. Here are some thoughts and notes that Erin shared with us from her first day at SABCS.
Tigerlily Foundation: What were your main takeaways from this session?
Erin: Minority populations are sometimes not informed of clinical trials. Patients are not necessarily unwilling, but unable to participate. However, this time impacts our ability to engage in trials to contribute to treatments that work better for our bodies, and time is a disparity! We need to hold researchers accountable to change, and accountability is needed so that money is not prioritized over patient’s needs.
Tigerlily Foundation: What new information did you learn that you want to learn more about?
Erin: I am very interested in learning more about the Diverse Clinical Trial Act by the American Cancer Society.
Tigerlily Foundation: What part of the continuum of care was addressed?
Erin: Practitioners must invest in cancer care programs that adequately receive the patient. The keyword is “receiving”. Patient perspective was important with a cross-sector partnership. Addressing research laziness, language gaps, and literacy issues i are important. One of the speakers brought up a common issue for patients of color contributing to worse outcomes. That is the belief, “I don’t want to be screened because I don’t have the resources to treat it if I have it [breast cancer].” There is a need here for comprehensive resources.
Tigerlily Foundation: Were disparities discussed or addressed? How so?
Erin: YES! This session was 100% about the disparities in healthcare and ideas for how to work towards filling in these gaps.
Tigerlily Foundation: Was your perspective influenced in any way after the session? If so, how?
Erin: I just think of how the panelist brought up a reason some people in underserved populations (largely due to systemic racism) almost have no choice at better outcomes; thinking of how the panelist spoke about a person who would not get screened because they could not afford (because of a myriad of factors) to get it treated anyway, so they might as well not even know. What a motivator for us all to listen and learn and work together to create pathways for all to receive equal access to the care we all deserve.
This content is sponsored by our Partners at Seagen, Pfizer, and Puma Biotechnology.
The session was moderated by Tigerlily Foundation’s President, Maimah Karmo; and Dr. Charles Perou, May Goldman Shaw Distinguished Professor of Molecular Oncology Research, Professor of Genetics & Pathology at the Lineberger Comprehensive Cancer Center, University of North Carolina.
Speakers for this SABCS Special Series Included: Lori L. Wilson, MD, Associate Dean of Diversity and Faculty Development, Howard University College of Medicine, Deborah Stroman PhD, UNC Health Equity and Social Justice, Lisa C. Richardson, MD, Director, Division of Cancer Prevention and Control, CDC, Olufunmilayo I. Olopade, MD, FACP, Director, University of Chicago, Daniel Calac, MD, Chief Medical Officer, Indian Health Council, Inc, George Sledge, Jr., MD, Professor of Medicine (Oncology), Stanford Cancer Center, Melissa B. Davis, PhD, Associated Professor in Surgery, Weill Cornell Medicine, Darcy Burbage, DNP, RN, AOCN, Na’Diah Smith, Patient Advocate, Aliya Whipple, Patient Advocate, Lauren Candies Tarpley, AYA Breast Cancer advocate, Published Author, Erica Stringer-Reasor, MD, Associate Professor of Medicine, Director Breast Cancer Program, University of Alabama – Birmingham, Eric P. Winer, MD, Chief, Division of Breast Oncology Center, Dana-Farber Cancer Institute, Amelie G. Ramirez, Dr.P.H., M.P.H., Chair, Department of Population Health Sciences, UT Health San Antonio, Elena Martinez, PhD, Professor UC San Diego Moores Cancer Center, Sophia George, PhD, Research Associate Professor, University of Miami Cancer Center, Thelma Brown, Patient Advocate, Ysabel Duron, Patient Advocate, and Ashley Dedmon, Patient Advocate.