Diversity and Inclusion Pledge for Black Women

The #InclusionPledge: WE PLEDGE TO ONLY PARTICIPATE IN ADVOCACY INITIATIVES – PANELS, ADVISORY BOARDS, PLANNING COMMITTEES, PROGRAMS, THAT INCLUDE THE EXPERIENCE OF AFRICAN AMERICAN WOMEN. Overview:  We believe that literacy, financial barriers, access, social, systemic and hereditary backgrounds should not be determinants of life and health equity. Particularly as patients are impacted by COVID and post COVID pandemic repercussions, the pandemic has had and will continue to impact health disparities for black women within the cancer research and cancer care ecosystem. In order to continue to accelerate and make an impact as it relates to disparities and black women, the inclusion pledge is imperative.
Mission: To advocate and activate the inclusion of women of color across initiatives impacting their breast and overall health.
Background: At the 2019 San Antonio Breast Cancer Symposium, several advocates made an #inclusionpledge.  The inclusion pledge originated with Angela “Jersi” Baker, (an African American metastatic breast cancer advocate and Founder of Angel in Disguise), Julia Maues and Christine Hodgdon.  Julia and Christine felt that as “white women living with metastatic breast cancer, [we] engage in advocacy to allow people with cancer to live longer and better lives. In this role, we get our voices heard by writing articles, speaking on panels, participating in advisory boards or reviewing grants. We have always seen ourselves as allies to people of color and thought it was unacceptable that certain population groups experience disparities in cancer outcomes. But we decided that “not being ok” with something this terrible wasn’t enough! We had to act.”  And, so began the #inclusionpledge.  At Tigerlily Foundation’s SABCS Fireside Chat, the #inclusionpledge was announced and everyone in the room was invited to commit to the pledge.  Maimah Karmo of Tigerlily Foundation, Jasmine Souers and Marissa Thomas from For the Breast of Us, joined Christine and Julia on a panel to make this pledge.  Maimah, Jasmine and Maurisa are all early stage breast cancer survivors who always include the metastatic experience as part of their education and advocacy work.  This pledge further empowers women of color, who often feel dismissed and not given a “seat at the table”.  Jersi continues to use her voice to make an impact. At Theresa’s Research Foundation conference, Jersi was sitting in an audience where women of color and inclusion was being discussed, yet there was not a woman of color was included as a patient advocate on the panel.  Christine and Julia agreed that it was unacceptable and asked her to join them on the stage.  This work, our collective voices, stance on disparities, diversity and inclusion is unwavering.  All stakeholders have to commit to change, to ensure women of color achieve health equity.  We have to collaborate to effect change.
The Facts:
    • Black women are often diagnosed at later stages when treatments are limited, costly and the prognosis is poor
    • Black women are often diagnosed at younger ages and have more aggressive breast cancer
  • Black women have a 40% higher mortality rate

How to Get Involved:  For us to end disparities in our lifetimes, every industry that affects or can affect the mortality rates of women of color must be involved.  Below, is a segmentation by industry, and and ways you can commit to being a part of the change.  You need to:

    • Step 1: Take the pledge via change.org and commit to at least one action that your organization can take.
    • Step 2: email us at inclusionpledge@tigerlilyfoundation.org to learn about your accountability plan.
    • Step 3: Provide your logo for inclusion in the pledge partner area below
    • Step 4: Share this pledge with your friends, family members, advocates and partner organizations.

Accountability:

  • Commit to providing updates of how your organization is keeping its commitment to working to end disparities in women of color
Industry Segmentation:

Advocacy

OBJECTIVES

  1. Leverage the power of advocates to promote to ensure other sectors for inclusive activity
  2. Commit to including women of color in all of its activities
  3. Ensure improved diversity within its organization
  4. Collaborate with like organizations (those who are also part of the pledge)
  5. Build relationships with organizations who are not a part of the pledge and partner with them
  6. Work to educate women of color about the benefit of participating in clinical trials, i.e., supporting research, supporting other patients who may be metastatic, life saving innovation

VALUE

For patient advocacy organizations frustrated by the lack of measurable action taken to improve healthcare equity and access for women of color, being a part of the Inclusion Pledge community provides a transparent and tangible framework across sectors for identifying and tracking equity actions, holding all involved accountable resulting in improved equity for women of color and a positive impact on their health outcomes, as committing to end disparities in our lifetime.

INDUSTRY

 OBJECTIVES  VALUE
Pharmaceutical 
  1. Seek out advocacy participation of diverse populations with a focus on women of color
  2. Set objective for % of inclusion in clinical trials and registries
  3. Ensure Active involvement with professional and advocacy organizations who do not have diversity and inclusion commitment
  4. Develop tactics and tools to improve education surrounding organization/company-wide products, services, marketing to and engagement of at-risk groups
  5. Partner with advocates, advocacy organization, and other stakeholders to eliminate barriers for African American patients not engaging in clinical trials due to mistrust, travel, financial toxicity, and clinical trial side effects
 For pharmaceutical companies seeking to diversify their clinical trials, but who are routinely criticized and challenged by their products’ clinical trial results failing to adequately reflect the national demographics (e.g. limited women of color participating in trials), being part of the select Inclusion Pledge community provides a transparent and tangible framework by which the organization may hold itself accountable and from which to promote successes against set equity actions, resulting in improved equity and a positive impact on the health outcomes of women of color, corporate social responsibility and the opportunity for thought-leadership engagement in this activity.
Diagnostic
  1. Seek out validation cohorts beyond traditional Caucasian population
  2. Set objective for % inclusion in clinical trials and registries
  3. Active involvement with anti-disparities professional and advocacy organizations
  4. Develop tactics and tools to improve education surrounding company’s products/services to women of color
 For diagnostic companies and laboratories with proprietary testing who routinely receive criticism due to tests’ validation results not adequatley reflecting the national demographics (e.g. limited women of color participating in trials). The Inclusion Pledge community provides a transparent and tangible framework by which the organization may hold itself accountable and from which to broadly communicate successes against set equity actions, resulting in improved equity for women of color, and positive PR for the company by increasing physician confidence in testing. (Leadership)
Payors
  1. Tie reimbursement for particular treatments to manufacturers’ inclusion of women of color in clinical trials and specific results by demographic
  2. Conduct Health Fairs in areas most impacted by inequitites and disparitites
  3. Put into place short and long term plans to continue to address needs of women of color enrollment
 For Integrated Health Systems interested in balancing revenue and expenses with good works, being a part of the Inclusion Pledge community demonstrates acknowlegement and an intent to balance the inequities and disparitites in healthcare resulting in a unique position of becoming a trusted partner and bettering the health of its served population.
Healthcare Systems
  1. Hold manufacturers accountable for treatments/tests due to manufacturers’ lack of inclusion of women of color in clinical trials
  2. Utilization of checklist or other means to identify women of color and patients at greatest risk
  3. Conduct Health Fairs in areas most impacted by inequitites and disparitites
  4. Put into place short and long term plans to continue to address needs of women of color enrollment
 For those who have committed to helping patients navigate the healthcare system and process during their most vulnerable time, joining the Inclusion Pledge provides a transparent and tangible framework by which a Navigator may hold him/herself accountable to making a difference in these patients lives, resulting in improved access and health of women of color.
Consumer Services/Corporations (Telecommunication Companies, Providers, Telehealth Companies, etc.)
  1. Make technololgy accesible and improve utility/literacy through common area hotspots (libraries, civic centers, churches, etc) for devices and access to on-line services
 For telecommunications/tele-health companies looking to better serve its customer base, being one of the first to join the Inclusion Pledge demonstrates corporate social responsibility, and strong action for the welfare of the community within this demographic, and also creates lifelong consumers using their specific platforms and services and delivers on the corporate mission of keeping people connected.

For providers of technology platforms looking to increase share and public perception, joining the Inclusion Pledge demonstrates strong action for the welfare of the community, positions the company as a household name globally and moves to fulfill corporate objectives and missions.

For telehealth companies looking to enhance value to their customers by broadening access to remote health services, being one of the first to join the Inclusion Pledge demonstrates strong action for the welfare of the community and positions the company as a household name not just within this demographic, but also broadly via media attention; creates lifelong and consumers using their specific platforms, etc.

SCIENTIFIC

 OBJECTIVES  VALUE
Clinical Trial Entities 
  1. Ensure women of color are involved in trial design, development and review
  2. Create specific, measurable, and understandable culturally relevant tools and campaigns to recruit women of color for clinical trials
  3. Create special programs to assist patients in order to eliminate clinical trial barriers, financial toxicity, travel to and from appointments, lodging, and other costs not covered by insurance address financial and other barriers, and provide resources to address those barriers
  4. Provide forums for women of color to connect and provide better communication between patients and researchers
  5. Report on quarterly actions taken
 For clinical trial organizations that struggle with adequate representation from certain demographics, joining the Inclusion Pledge serves as guiding principle to make every effort to broaden inclusion of women of color, and provides a transparent and tangible framework by which the organization may hold itself accountable and from which to promote successes against stated equity actions, making it a more attractive service to pharma and other customers.
 Physician Associations
  1. Support of health equity initiatives in all communications
  2. Health equity sessions and “how-to” virtually and at live meetings
  3. Make health equity education a part of all physician boards
 For physician associations that know the right thing to do, but may not know how to do it, joining the Inclusion Pledge provides a transparent and tangible framework by which the organization may hold itself accountable and from which to promote successes against stated equity actions, resulting in improved access and health of women of color.
 Clinicians
  1. Awareness of definitions of dispartities and inequities – ensuring staff has been trained
  2. On every patient visit, utilization of checklist or other means to identify women of color
  3. Identification and connection of patient to support programs
 For those that have the most intimate relationship with the patient and who struggle with identifying and educating those at greatest risk, joining the Inclusion Pledge provides a transparent and tangible framework by which a clinician may hold him/herself accountable to making a difference in these patients lives, resulting in improved access and health of women of color.
 Navigators
  1. Education on disparities and inequities that pertain to women of color
  2. Utilization of checklist or other means to better communicate with women of color and patients at greatest risk
  3. Enhance connection and follow up with patient
  4. Measurable improvement in outreach, follow up and patient connection
 For those who have committed to helping patients navigate the healthcare system and process during their most vulnerable time, joining the Inclusion Pledge provides a transparent and tangible framework by which a Navigator may hold him/herself accountable to making a difference in these patients lives, resulting in improved access and health of women of color.

POLICY

Government, FDA, Public Health Organizations

OBJECTIVES

    1. Guidance mandating inclusion of women of color in clinical trials
  1. Commitment to policy ensuring that all trials have participation of women of color

FAITH-BASED

  • Create a plan for outreach and engagement into communities of color
  • Develop Multicultural Ministries
  • Increase Diversity in Recruitment of Black church leaders
  • Host diversity and inclusion conversations/workshops
  • Create inclusion course and encourage leaders/congregation members to participate

What is your #InclusionPledge?

Pledge Here on Change.Org 

Pledge Partners:

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Founding Members


Jersi Baker		 Tomika Bryant LaTonya Davis Jamil Rivers Tiah Tomlin
Ricki Fairley
Christine Hodgdon		 Maimah Karmo Julia Maues Valencia Robinson
Dana Donofree

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