Tigerlily Foundation’s Young Women’s MBC Disparities Initiative

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.

The Summit was an all-day event that served as a day of strategic planning among patients and stakeholders in the metastatic breast cancer community. It was a unique event because it provided a platform for women of color living with metastatic breast cancer to share their experience about living with this disease, and to voice their unique needs, as well as their concerns about misperceptions related to living with metastatic breast cancer. Moreover, metastatic breast cancer patients were speaking directly to medical researchers, healthcare professionals, policymakers and the media – an opportunity that does not readily exist as part of the current norm.

The insights gained from this Summit included strategies to increase awareness about metastatic breast cancer and about the unique needs of this subgroup of breast cancer patients. Also, this Summit led to recommendations for developing culturally-appropriate tools for educating and empowering women of color on metastatic breast cancer so that they can be advocates in the community.

Shonte Drakeford, a metastatic breast cancer patient and advocate, has shared the following:

“The MBC Disparities Listening Summit was absolutely amazing. It was captivating, invigorating and motivating. As someone who is African American living with MBC, this was my first time ever meeting so many of color with this disease. I truly thought I was all alone. This was a space that is needed and I hope to see more targeted programs like this because this helped me truly realize how many disparities we do face versus other races who has MBC, we have more poverty that impacts our daily lives, lack of access, lack of quality of care, etc. I do like the call to action portion of the Summit, it focused on the “HOW” rather than us talking. Thank You Tigerlily for hosting this event.” 

Sheila McGlown, a metastatic breast cancer patient and advocate, has shared the following:

One major misperception and barrier to educating young women of color on metastatic breast cancer is the belief that “young women don’t get breast cancer.” We need to continue to dispel the myths of breast cancer throughout the African American community and it starts with useful, though-provoking listening summits like this.

I participated in the “Collaborate to Accelerate Impact: Metastatic Breast Cancer Project” panel along with three fellow metastatic breast cancer patients and advocates. We are all Ambassadors for The Metastatic Breast Cancer Project, which is part of Count Me In, a nonprofit organization that brings together patients and researchers as partners to accelerate discoveries in cancer research. We shared our personal journeys with metastatic breast cancer and how it has affected our lives permanently. We highlighted that the life expectancy for metastatic patients is 3-5 years, and that metastatic breast cancer patients will always be on treatment, as there is currently no cure for this disease. I shared that I have responded well to treatment and that I have been living with metastatic breast cancer for 9 years. As I listened to the other panelists, I realized that all of our experiences with metastatic breast cancer were different but so similar. We all agreed that we were not going to let metastatic breast cancer keep us from living our lives, and that we needed to help others. So, we took steps to become advocates for our community despite our diagnosis.

From the other panels at the Summit, I learned that organizations understood the urgency surrounding the African American population and metastatic breast cancer. In Jackii Wang’s remarks on behalf of Congresswoman Debbie Wasserman Shultz, she urged everyone to engage in their own communities. She had us write down what we saw in our neighborhoods when we growing up. One common thread is that there weren’t doctor offices located near or close to our neighborhoods. This important revelation demonstrates a potential underlying factor that contributes to disparities.

Markette Sheppard’s keynote conversation with David Lacks, grandson of Henrietta Lacks was particularly touching because he talked about how his grandmother’s cells are still being immortalized today for cancer research. The key takeaway from his message for me was that research is important and that we should participate in clinical trials so we are no longer underrepresented. Also, he mentioned that they are having a conference to commemorate Henrietta Lacks 100th birthday this year. Henrietta’s legacy will continue on forever and she is one of the reasons I am participating in a metastatic breast cancer clinical trial today.

We need more listening summits like this and I’m thankful to Tigerlily Foundation for organizing such an amazing event. This was a great way to place a spotlight on the dire attention needed to address the disparities that African American women face as young women, and as women of color living with metastatic breast cancer, and to cross share information about the different strategies to reach this vulnerable population. It was such an honor to be amongst such an engaged audience of young adults, from all different races, who were eager to learn how they can better help the African American community. We received many comments from participants that they really didn’t know about how metastatic breast cancer affects our lives. We even received an invitation from HUMBLE (Howard University Metastatic Breast Cancer Learning Experience), to speak to students at Howard University.

The questions that were raised during the Summit made us think about how are we going to enact change in our various communities. What do we really want to change and improve on? We know that racial disparities exist but we also know that within the African American community obesity is a problem, and that obesity is a risk factor for breast cancer. So how should we address this? Further, not getting annual mammograms and not seeking follow-up care are also problems that we prevalent in the community. How do we enact change from within? I just truly believe these important topics are not talked about enough and that there isn’t sufficient emphasis on understanding why African American women die at a much higher rate of breast cancer. I think it’s up to advocates like us to make sure we are not forgotten. Our voices matter so let’s keep using them to reach audiences that have never been reached before and that audience is the African American community. Let’s have the chat!”

Our next step, based on the recommendations from our March MBC Disparities Listening Summit, is to engage young women of color who are usually not “at the table” in advocacy and/or at scientific conferences.  With this in mind, we will hold an MBC Listening Fireside Chat at the San Antonio Breast Cancer Symposium (SABCS) in December.

MBC Disparities Listening Fireside Chat at SABCS:

At this event, we will give young women of color a “seat at the table”, by giving them a platform at an international scientific meeting – SABCS. This  MBC Disparities Listening Fireside Chat at SABCS will convene a diverse representation of people from communities of color, impacted by MBC.  This event will be the first of its kind historically, bringing together such a diverse range of people from at an event like SABCS, to discuss the challenges and gaps affecting this community and how to bridge them.  Before the SABCS event, we will 1) train individuals who are new to advocacy.  After the MBC Disparities Listening Fireside Chat, advocates who are new to SABCS will 2) attend various SABCS meetings, providing them with additional “seats at the table”, and 3) they will share their perspectives via social media, blogs, and video while at the event and beyond.

Join us at Tigerlily Foundation’sYoung Women’s Metastatic Breast Cancer Disparities Fireside Chat at the San Antonio Breast Cancer SymposiumDecember 10, 2019 7:30 A.M. – 11:00 A.M.

RSVP here.

Join us for a dialogue engaging the African-American community, centered on understanding the gaps, misperceptions and barriers to educate young women of color on metastatic breast cancer (MBC). We invite young women, patients, caregivers, community leaders, creators, healthcare providers, advocates, researchers and policymakers to join us in partnership for a day of bringing together African American young women from communities facing disparities, scientists, researchers, advocates and industry at the largest global gathering focused on breast cancer.