Bridging Clinical Gaps and Disparities in Care in TNBC
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This webinar will focuses on racial, ethnic, and socioeconomic disparities with the clinical gaps in treatment for women with triple-negative breast cancer (TNBC). Our guest speaker Shonta Chambers, MSW, is the EVP of Health Equity and Community Engagement at the Patient Advocate Foundation and Principal Investigator for SelfMade Health Network. Come and learn about this complex subtype, barriers to care, address the myths and fears around clinical trials in specific racial and ethnic communities, and help bridge the clinical gaps to improve survival outcomes for patients with TNBC.
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Bridging Clinical Gaps and Disparities in Care in TNBC
- 1. Bridging Clinical Gaps and Disparities in Care in TNBC The Opportunities to Improve Outcomes for Black Women Shonta Chambers February 15, 2023 SHARE TNBC Webinar Series
- 2. OUR MISSION Patient Advocate Foundation (PAF) is a national 501(c)3 non-profit organization which provides case management services and financial aid to Americans with chronic, life-threatening and debilitating illnesses. OUR HISTORY PAF was founded in 1996 by Nancy Davenport-Ennis and John H. (Jack) Ennis to help address the issues faced by patients like their friend Cheryl Grimmel who had to battle not only her breast cancer but for access to affordable treatments. In PAF’s first year Nancy and a part-time volunteer staff of 2 provided case management assistance to 157 patients with access barriers to prescribed care. Fast-forward to 2019, we’ve helped a cumulative total of more than 1.3 million patients nationwide with support provided by more than 200 staff.
- 3. IT STARTS WITH THE PATIENT “Some patients suffer tremendous financial consequences as a result of illness while others begin their journey already disadvantaged by their pre- existing socio-economic circumstances. Whatever the case, we know that the unique needs of vulnerable, low-income patients can be addressed with navigation to critical resources like food, housing, utilities, and transportation.” Alan J. Balch, PhD Chief Executive Officer
- 4. • What is Triple Negative Breast Cancer? • Overview of racial, ethnic, and socioeconomic disparities that contribute to disparate cancer • Disparities in Cancer Clinical Care and Solution Focused Efforts • Address the myths and fears around clinical trials • Resources to support patients living with TNBC Today’s Presentation
- 5. https://www.cdc.gov/cancer/breast/triple-negative.htm What is Triple Negative Breast Cancer
- 6. Who Is at Risk for Triple-Negative Breast Cancer Women younger than 40 Women who have a BRCA1 mutation Black Women
- 7. Cancer health disparities are adverse differences in cancer burden experienced by racial and ethnic minorities and other medically underserved populations that include those living in rural areas; individuals from sexual and gender minorities; and those living in persistent poverty. (AACR Cancer Disparities Progress Report 2022) Cancer Health Disparities
- 8. What Populations Experience Cancer Health Disparities
- 10. Social Determinants Of Health (SDOH) Social Risk Factors Social Needs the social and economic non-medical factors that influence health outcomes The needs of an individual stemming from the social determinants the adverse social conditions associated with poor health Other contributing factors
- 11. “We can reduce health disparities and better connect people to high- quality medical care, but to really make a difference, we need to address the social determinants of health and equity that protect some people and push others off the cliff.” - Camara Phyllis Jones, MD, MPH, PhD The Voices of Champions “Unfortunately, the healthcare system is now reckoning with the general inattention to diseases that affect certain populations. Society has fragmented us into healthcare haves and have-nots.” - Olufunmilayo I. Olopade, MD
- 12. Barriers and Gaps in Clinical Care and Solutions
- 13. Factors Contributing to Disparities • Two national online surveys conducted December 2020 • N=600 (300 patients/survivors and 300 family caregivers – Oversampling to reach 227 African Americans and 238 Hispanics • N=208 oncologists Journal of National Comprehensive Cancer Network. 2022 20(10): 1092-1098 © National Comprehensive Cancer Network, Inc. 2023, All rights reserved.
- 14. Factors Contributing to Disparities Schatz A et al, JNCCN 2022 20(10): 1092-1098 © National Comprehensive Cancer Network, Inc. 2023, All rights reserved.
- 15. Efforts Underway Address Gaps and Barriers in Cancer Care
- 16. • Tool for providers, payers, and accreditation entities working to advance racially equitable practices in cancer care. • Includes 17 practices to advance equitable care delivery divided into the following categories: – Community Engagement – Accessibility of Care and Social Determinants of Health – Addressing Bias in Care Delivery – Quality and Comprehensiveness of Care • Available at: • https://www.nccn.org/docs/default-source/oncology-policy- program/2021_recommendations_for_elevating_cancer_equity.pdf?sfvrsn= 5d2c0d84_16 Health Equity Report Card Efforts Underway Address Gaps and Barriers in Cancer Care
- 17. Factors that Contribute to Disparities • Multifactorial • Include: – Implicit and/or explicit bias in care delivery – Dearth of representation of people of color in oncology – Research populations not reflective of diverse community of patients – Lack of insurance and underinsurance – Cost of care and financial burden – Disparate access to clinical trials – Health-related social needs and social determinants of health Root Causes of Disparities in Guideline-Adherent Care Schatz A et al, JNCCN 2022 20(10): 1092-1098, Winkfield K et al, JCO Oncol Practice 2021 17(3) e278-293 © National Comprehensive Cancer Network, Inc. 2023, All rights reserved.
- 18. Barriers in Cancer Care Schatz A, et al, JNCCN 2023 in press © National Comprehensive Cancer Network, Inc. 2023, All rights reserved.
- 19. Clinical Trial Participation: It’s Time to Get Involved It’s Time to Get Involved
- 20. Clinical Trial Participation: Why Is It So Important for Women of Color
- 21. Clinical Trials Myths True/False 1. I will be treated like a guinea pig. 2. If I join a clinical trial, I might get a “sugar pill” or placebo instead of a real drug. 3. Once I enroll in a clinical trial, I will not be able to change my mind 4. Clinical trials are dangerous because they use new practices and medicines 5. Being in a clinical trial will not help me.
- 22. Clinical Trials Myths True/False 1. False 2. False 3. False 4. False; however, because clinical trials are designed to answer an important question, research does have some level of risk. The safety of all clinical trials participants is a top priority event while the clinical trial is ongoing. Researchers frequently and extensively monitor participants. 5. False
- 23. Educational: Breastcancer.org- https://www.breastcancer.org/types/triple-negative American Cancer Society Centers for Disease Control and Prevention- https://www.cdc.gov/cancer/breast/triple- negative.htm Triple Negative Breast Cancer Foundation- https://tnbcfoundation.org/ Clinical Trials: TOUCH Black Breast Alliance-When We Trial Financial: Patient Advocate Foundation-Co Pay Relief Program Administrative: Patient Advocate Foundation- Health Equity Case Management Program Additional Resources to compliment SHARE
- 24. https://www.whenwetrial.org/ Increasing Knowledge About Clinical Trials
- 25. Additional Resources to compliment SHARE
- 26. https://education.patientadvocate.org/resource/breast- cancer-resource-directory-2/ Additional Resources to compliment SHARE
- 28. Potential Administrative Resources https://www.patientadvocate.org/connect-with-services/case-management- services-and-medcarelines/ Key Points About PAF Case Management •PAF Case Management is free for patients and families living with a serious or chronic health condition. •To get services, a patient must be in, just starting or just ending treatment for a serious health condition. •To get services, a patients, caregiver, or healthcare provider can contact us online or 800-532-5274.
- 29. Thank You! Shonta Chambers, MSW EVP Health Equity Initiatives and Community Engagement Shonta.Chambers@patientadvocate.org (757) 952-2533
Editor's Notes
- Triple-negative breast cancer is invasive breast cancer that is: estrogen receptor-negative progesterone receptor-negative HER2-negative. The cells in triple-negative breast cancer don’t have receptors for the hormones estrogen or progesterone and don’t make too much of the HER2 protein. So triple-negative breast cancers don’t respond to hormonal therapy medicines or the medicines that target the HER2 protein. This information is provided by Breastcancer.org. Triple negative breast is usually more aggressive, harder to treat, and more likely to come back because it does not respond to hormonal therapy medicines or medicines that target HER2 protein. TNBC is a kind of breast cancer that does not have any of the receptors that are commonly found in breast cancer.
- Although triple negative breast cancer represents 10% of breast cancers overall, nearly 20% of black breast cancers are triple negative. Black women are nearly twice as likely to be diagnosed with triple negative breast cancer. Death from breast cancer for Black women is 40% higher than their white counterparts.
- If a health outcome is seen to a greater or lesser extent between populations, there is disparity.
- Research has identified complex factors, such as socioeconomic, cultural, social, and environmental factors, that influence each other to drive and perpetuate cancer health disparities. (AACR 2022)
- When we don’t participate in clinical trials the data does not reflect our genetic composition; the impact on our biological differences, nor captures our specific needs.
- Women, and specifically women of color, are underrepresented in clinical trials, limiting biological understanding and contributing to health inequities and social injustice. Clinical Trials allow the opportunity to contribute to and benefit from clinical innovation. Significant human participant abuses in medical research have been cited as reasons for low minority participation in contemporary clinical trials. The Tuskegee Syphilis Study, for example, has become infamous as a grievous example of American medical research gone awry. Why is diversity in clinical trials so important? Different people may have different reactions to the same treatment, based on their age, gender, weight, race, ethnicity, and other factors. The safety and efficacy of vaccines and medicines can differ based on age, sex, gender, race, and ethnicity. If a clinical trial doesn't include appropriate representation of diverse patients, the results and findings cannot be translated broadly across all patient demographics. Current literature on this issue frequently reiterates the following five key barriers underrepresented minority groups face against clinical trial participation: mistrust, lack of awareness and access, cultural and language barriers, investigator and provider bias, and financial burdens. The most common barriers to participation included fear and mistrust of research due to multiple factors, such as a lack of information about research and prevailing knowledge of historical occurrences. When we don’t participate in clinical trials the data does not reflect our genetic composition; the impact on our biological differences, nor captures our specific needs. The safety, efficacy, and effectiveness of medicinal products depends upon the review and approval of planned clinical trials by impartial regulatory bodies including ethical review boards and health regulatory agencies.
- False-Trial participants are fully informed of the risks and benefits and treated with respect and dignity. False-Placebos are rarely used in cancer trials because the best available treatment (aka “standard of care”) is used False-If you decide that you no longer wish to participate in a trial, you can withdraw at any time. False-Because clinical trials are designed to answer an important question, research does have some level of risk. However, clinical trial participants receive investigational drugs ONLY after that drug has gone through extensive testing. False-If you choose to participate in a clinical trial, you have the unique opportunity to receive an investigational drug that is not available for patients outside of the trial. Patients who participate in clinical trials play a key role in advancing medical science that help more people live longer and better lives.
- Eradicating Breast Cancer and related disparities is going to take the collective experiences, skills, and intellect of all of us in the breast cancer space to bring about sustainable change.
- Key Points About PAF Case Management PAF Case Management is free for patients and families living with a serious or chronic health condition. To get services, a patient must be in, just starting or just ending treatment for a serious health condition. To get services, a patients, caregiver, or healthcare provider asks for our help. It's that simple.