Tigerlily’s: Young Women’s MBC Disparities Initiative

Tigerlily Foundation’s Young Women’s MBC Disparities Outreach Initiative Goal: To reach young African American women in underserved communities and those facing disparities through immersive experiences, and to end disparities in our lifetime.

Challenges:

  • MBC disproportionately affects the African American community and younger women.
  • Black women and white women get breast cancer at about the same rate, but black women are 40% more likely to die from breast cancer than white women.
  • Black women are more likely than white women to get triple-negative breast cancer, a kind of breast cancer that is often aggressive and recurs after treatment.
  • Due to a legacy of exploitation of people of color in the clinical trial/scientific/research settings, African American women have a mistrust of the scientific, healthcare system and providers.
  • African American women have lower enrollment in clinical trials, which makes it more difficult to design treatments for this population, which may contribute to lower mortality rates.

Key Activities to Date:

1. Tigerlily Foundation’s MBC Listening Summit

On March 20, Tigerlily Foundation hosted a Metastatic Breast Cancer
Disparities Listening Summit, a historic initiative that is the first of its kind. The MBC Listening Summit elevated the conversation surrounding the disparities faced by African American women, a population that has a high breast cancer death rate, and an increased risk of developing breast cancer at a young age. Thus, the disparities are two-fold among African American women living with metastatic breast cancer – disparities as young women and disparities as women of color. The approximately 100 attendees were a mix of young women, patients, caregivers, community leaders, creators, healthcare providers, advocates, researchers and policy makers. Special thanks to our partners, including Pfizer, Lily, Celgene, the Metastatic Breast Cancer Project at Harvard University, Project HUMBLE, Howard University, and the IRIS Collaborative. See the program here.

2. Young Womens Breast Day on the Hill: Ending Disparities Facing Young Women Living with Metastatic Breast Cancer

On November 21st 2019, Tigerlily Foundation hosted our 7th YWBHD on the Hill: Ending Disparities Facing Young Women Living with Metastatic Breast Cancer was the first step to establish priorities to form an alliance to end MBC disparities through advocacy and policy. The event objectives were to convene Members of Congress, staffers, advocates, breast cancer survivors, healthcare providers, national/local healthcare leaders, media, and community activists for a collaborative conversation to share the important work that is being done to impact breast cancer and young women, since the Breast Cancer Education and Awareness Requires Learning Young (EARLY) Act, spearheaded by Rep. Debbie Wasserman Schultz, was passed. The event also focuses on the work that the Centers for Disease Control Advisory Committee on Breast Cancer in Young Women, national and local breast health groups have accomplished. See the program here.

3.Tigerlily Foundation Metastatic Young Living Focused Empowered Disparities Fireside Chat at San Antonio Breast Cancer Symposium

On December 10th 2019,

Tigerlily Foundation first ever Fireside Chat bringing the voice of young women of color, to SABCS. MBC ANGELs, experts and industry leaders gathered to identify barriers, solutions and pledge to end MBC disparities and create access for women of color. 

The event was designed to foster transformational dialogue engaging young women in the African American community from 20 cities identified as locations having a high rate of breast cancer diagnosis among women of color using the hashtag #ListenUpMBC. For many of these advocates, it was their first time hearing of and/or being given the opportunity to attend such a powerful, international event.

After the MBC Disparities Fireside Chat, our MBC ANGEL advocates attended various SABCS presentations, advocacy, poster sessions and the best of SABCS meetings, providing them with additional “seats at the table” and allowing them to work side-by-side with some of the best in breast cancer research and advocacy.

After leaving SABCS, our MBC ANGEL advocates will participate in a one-year cohort program that will offer education, training and immersive experiences in their local community and nationally. Advocates will share their perspectives from these various opportunities via digital content with their local communities.

SABCS Fireside Chat Event photo gallery

Our Collective Impact: SABCS Fireside Chat Impact Snapshot

  • +125 attendees engaged in an impactful conversation in the room and online using #ListenUpMBC
  • +4M Impressions with Tigerlily Foundation trending on social media at SABCS
  • 3.3M Impressions of #ListenUpMBC
  • 8.3M Impressions via #ListenUpMBC

Download the Fireside Chat Engagement Report.

Media Coverage

‘I belong here’: Advocate works to raise profile of black women with breast cancer   

Tigerlily Foundation Hosts Historic Young Women’s Metastatic Breast Cancer Disparities Fireside Chat at the San Antonio Breast Cancer Symposium

The Latest Developments Reported at the 42nd Annual San Antonio Breast Cancer Symposium (SABCS)

La Fundación Tigerlily es anfitriona de las históricas disparidades metastásicas del cáncer de seno de las mujeres jóvenes

Cancer Patient Advocates Find Strength in Numbers

4. Young Women’s MBC Disparities ANGEL Cohort

The MBC ANGEL Program consists of 8 education modules that are informed by the young women of color in our program and the communities we aim to collectively empower. This curriculum addresses issues of systemic barriers, social determinants of health, cultural competency, mistrust and mobilizes young women of color in outreach to represent and impact the communities with the greatest MBC disparities.

  1. Introduction
  2. Disparities & MBC
  3. Guidelines
  4. Clinical Trials & Genetic Testing
  5. Mobilization
  6. Healthy Behaviours
  7. Patient Empowerment
  8. Health Lifestyle Habits

The MBC ANGEL advocates will participate in a variety of activations including:

  • +60 Local MBC Education & Outreach Activities
  • +20 advocates to attend scientific conferences
  • 8 MBC advocate modules & training sessions
  • 12 MBC social media resources

Young Women’s MBC Disparities Initiative Downloads

5. #ListenUpMBC Activation

 Together We Are:

  • Building a global platform that will end breast cancer disparities among young women of color in our lifetime.
  • Facilitating conversations with MBC patients, experts and partners to educate young women of color on MBC disparities.
  • Demonstrating the importance of access to innovations in MBC treatments including clinical trials for women of color record the barriers and misperceptions faced by young women of color.
  • Creating partnerships, tools, content, messages, and methods to lower black breast cancer mortality rates.
  • Mobilizing a network of diverse MBC ambassadors and experts to partner with the Tigerlily Foundation on how to best meet the needs of their community.

6. Diversity and Inclusion Pledge for Black Women

The #InclusionPledge:

WE PLEDGE TO NOT PARTICIPATE IN ANY ADVOCACY INITIATIVE – PANELS, ADVISORY BOARDS, PLANNING COMMITTEES, PROGRAMS,  THAT DO NOT 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.

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 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.

Learn more about our pledge here.

7. #ListenUpMBC CONFAB on Young Womens MBC Disparities?

Tigerlily’s #ListenUpMBC Confab on Young Women’s Metastatic Breast Cancer (MBC) Disparities during the American Society of Clinical Oncology (ASCO) 2020 Annual Meeting will amplify this year’s theme “Unite & Conquer: Accelerating Progress Together” by virtually mobilizing young women of color who are usually not “at the table”, scientists, oncologists, and industry leaders to end MBC disparities in our lifetime. On Wednesday, May 27 we held a Twitter 101 lunch and learn session to prepare for Friday, May 29, Confab style interactive discussions, town hall and twitter chat. On Saturday, May 30 we hosted virtual happy hour with engaging breakouts, prizes, and swag as to close out our #ListenUpMBC Confab.

8. Know More Disparities & Pull up a Seat

9. Black in Cancer Week Collaboration

10. Local Activations

  • Pull up and Park (Washington, DC)
  • Paint the City Pink (Baltimore)
  • Pull up and Park (Alexandria)

11. Research Papers on Disparities

12. San Antonio Breast Cancer Symposium 2020:  Tigerlily & AACR Health Disparity Conversation