Health Disparities in MBC

In 2020 METAvivor was part of a national conversation that discussed implicit bias and the need for inclusion of people of color especially those living with metastatic breast cancer (MBC). We, along with other organizations, made an Inclusion Pledge and included tangible targets for our organization. One of the important tactics was to host a working conference about Health Disparities in MBC. We formed a committee and began planning a virtual Engagement Conference to Overcoming Health Disparities in MBC. What emerged from the conference, was a set of strategies for stakeholders in the MBC community.  

Overcoming Health Disparities in MBC is a key focus area for METAvivor. There are several things that underpinned the conference and informed our development of a working conference. METAvivor hosted a survey to determine what people of color in the MBC community needed, gap areas in healthcare and ways METAvivor could and should play a role. The crosscutting issue was overcoming disparities for people of color who were living with MBC. The unbalanced statistic were alarming. 

Under the leadership of president, Jamil Rivers and collaborating with a diverse committee of patients and thought leaders in the MBC community, METAvivor launched an Engagement Conference to develop strategies to overcome health disparities in MBC. The insightful presentations are included below for you to view. 

What emerged from the Engagement Conference: Overcoming Health Disparities in MBC, was a list of tangible strategies for stakeholders in the MBC community to work toward. The strategies from the conference are specific to each MBC stakeholder group and are outlined below. If you would like more information, please contact [email protected]. 

 

Health Disparities Conference Outcomes

 

Patient Advocate 

  • Require Health Systems to partner with community based and advocacy organizations to increase the capacity of health literacy’s and provide navigation support to patients. 
  • During first meetings ask if an advocate can be present during each encounter. This ensures trust and comfort. Ask for referral to a peer mentor or navigator. Ask for notetaker.
  • Work with MBC organizations to introduce legislation to provide ALL patients with a 2nd or 3rd opinion
  • Learn about your subtype and any mutations.
  • Ask if there are other treatments that were not mentioned in recommendations, or if there are clinical trials at the institution or elsewhere

 

Researchers 

  • Encourage researchers to have representation of all races in clinical trials so the final treatment is inclusive of all races.
  • Encourage Media amplification of disparities in metastatic breast cancer
  • Develop materials in a variety of formats (written, infographics, video) to explain clinical trials and the importance of participation
  • Work with a diverse group of advocates, from research concept (bench research and translational and clinical), and partner with the advocates in every phase (eg. design, implementation and dissemination of results). 

 

Clinician 

  • Create accountability measures for health systems where patients are ensured equitable care. Require accountability measures with checks and balances to ensure quality standard of care for all.
  • Participate in programs to evaluate the current status and identify biases/racism within the institution.
  • Implement programs to address health literacy.
  • Implement a peer-to-peer mentorship program and navigation program to ensure all patients have equal access to state of the art therapies
  • Train clinical staff look at each patient as an individual person by: explaining all options in plain language; asking what the patient's goals for treatment are updated periodically; offer to provide a note taker to capture what is discussed at each visit; asking if the patient wants a family member, peer advocate, interpreter, or other person present during visits; ensuring the patient understands what was discussed by asking the patient to tell the clinician what they heard (not just asking "any questions?")
  • Offer clinical trials to every single patient. Including trials for which the patient may qualify that are not at your institution. 

 

 

Meet the Speakers

 

Alana Eiseman
Associate Director, Corporate Advocacy, Eisai Inc.

 

 

 

Arnethea Sutton, PhD
Postdoctoral Fellow, Virginia Commonwealth University

 

 

 

Colleen Nguyen
Manager, Community Engagement, Count Me In

 

 

 

Jamil K. Rivers
President, METAvivor | Founder, The Chrysalis Initiative

 

 

 

Josefa Briceno
Medical Head of Breast Cancer, US Medical Affairs, AstraZeneca Pharmaceuticals LP

 

 

 

Lauren McCullough, PhD, MSPH
Rollins Assistant Professor, Emory Rollins Schools of Public Health and the Winship Cancer Institute

 

 

 

Lori Wilson, MD
Professor, Department of Surgery, Howard University College of Medicine

 

 

Maryam Lustberg, MD, MPH
Director, Breast Center at Smilow Cancer Hospital; Chief, Breast Medical Oncology; Associate Profess, Yale University School of Medicine/Smilow Cancer Hospital

  

 

Monique A. Gary, DO, FACS

 

 

Nikhil Wagle, MD
MBC Project

 

 

Sheila McGlown
Patient Advocate

 

 

Shonte' Drakeford
Board of Director Member, METAvivor

 

 

Zanetta Lamar, MD
Florida Cancer Specialists & Research Institute (FCS)