By: Maimah Karmo
One of my favorite poets, Rumi said, “The Universe is not outside of you. Look inside yourself; everything that you want, you already are.” I take this approach to everything I want to change in the world – in my personal life and my work, because the two are really the same. Who you are and what lives in you is what you carry into every aspect of your life.
As the world has put a laser focus on health equity and the disparities that exist in communities of color that equate to so many barriers, inequities, and loss of life, my personal commitment has been to show up with love and inspire others to know that what they seek to learn or create already lies within each one of us – we just have to listen to ourselves and others in order to find the solutions.
It has been powerful to see the allyship that has come alongside Black and Brown communities, and the commitments that have been put into place to ensure we have lasting change, when it comes to ending health disparities. Working towards these changes though, cannot be performative, but must be active, and a constant unlearning and relearning, and one where people in positions of privilege work to discreate systemic and personal barriers, by listening, leaning in, learning and leveraging what they have learned. The pandemic highlighted health inequities related to COVID-19, but disparities have long existed within the breast cancer space. An important illustration of this is the underrepresentation of racially and ethnically diverse groups in clinical trials. In fact:
- Patients from underserved populations in the U.S. are less likely to enroll in clinical trials for cancer.1
- People from racially and ethnically diverse backgrounds are often underrepresented in clinical trials for cancer.2
- Survival rates for breast cancer are generally high, but Black women in America are 40 percent more likely to die of breast cancer than white women 3.
- Black women in the US, more often than other women with the same stage disease, fail to receive timely diagnosis and recommended treatment for breast cancer. 4
- Racially and ethnically diverse groups continue to be underrepresented in global clinical trials.5
As one of the first Tigerlily Foundation #InclusionPledge partners, Pfizer committed to a multi-session, two-way dialogue between Pfizer Clinical Trial Colleagues and Tigerlily ANGEL Advocates to work towards building inclusivity in clinical trials. The program goal focused on:
- Understanding the breast cancer journey for women of color.
- Building trust and enhancing the relationship between Tigerlily and Pfizer Colleagues – which could also lead to increased trust in the biomedical research and healthcare communities.
- Improving access to breast cancer clinical trials for populations of color.
- Educating women of color on clinical trials and strengthening their capacity to increase awareness and participation in breast cancer clinical trials.
- Identifying barriers and determining solutions that result in greater health equity within breast cancer clinical trials, with the hope of sharing these learnings in other therapeutic areas.
The Health Equity Advocacy and Leadership (HEAL) summits were transformational. We set the stage with an open and sacred space of heart, authenticity and vulnerability. We went into the sessions with the shared belief that it was essential to gather data inclusive of all those touched by cancer to gain a true reflection of how treatments are developed, and why certain populations have greater barriers to access, care, adherence, thus limited options. With Pfizer Clinical Trials Teams listening and learning, Tigerlily ANGEL Advocates shared deep insights, addressed gaps, and uncover potential solutions.
While there are so many barriers, we’re on the cusp of building a new legacy – and this is happening from all sides – and from grassroots to global. We are coming together to create a new and different future. That’s how we lead people to create better outcomes. And this work is a part of that new frontier. While we address our feelings around clinical trials and trust, we also want to make changes within ourselves, that will impact our children, and our children’s children. We’re living our legacy by creating change from within and that change reverberates in every hall, room and system we touch.
Some powerful quotes from the sessions follow:
“We have to make sure the information about clinical trials is coming from someone that the community trusts. Who is this information coming from? Do they trust this person? Can they follow the lead of whomever may be giving that information? Because trust is big.” –Maricia Cole, Tigerlily ANGEL Advocate
“The feeling that you have some control – you can make a choice, even if it’s small choices. Convenience, cost, but your ability to make a choice and choose what works best for you is empowering during your journey.” -Tova Parker, Tigerlily ANGEL Advocate
“The question is whether our experience is perceived to have value.” –Na’Diah Smith, Tigerlily ANGEL Advocate
“[… there’s a void in the research when it comes to African Americans, but they don’t necessarily know how to listen and get us excited about the process. I feel like they want us to contribute or would like us to be included because the data are necessary, but they don’t know how to get us to feel comfortable about being included.” –Kellie K. Goss, Ed.D., Tigerlily ANGEL Advocate
“Pfizer took the Tigerlily Inclusion pledge, committing to take specific actions to dismantle and eradicate systemic barriers. My commitment is to continue finding ways to turn our Tigerlily Inclusion Pledge into Action.” -Katrina M. Johnson, Pfizer Director, Advocacy and Professional Relations
“Our meetings with the Tigerlily ANGEL Advocates were a highlight of 2021 for me. The dialogue at the HEAL sessions was open, honest and informative. I plan to incorporate the learning into my breast cancer clinical trial planning and look forward to seeing ways in which we can all work together to improve awareness of clinical trial participation and diverse representation.” -Dr. Julia Perkins Smith, Pfizer Global Clinical Lead
“It was an honor to be a part of the Tigerlily HEAL sessions this year where the Angel advocates shared stories of their breast cancer journey. The study teams will bring learnings from these sessions into the design and implementation of our new breast cancer clinical trials. We will continue to partner with Tigerlily and the Angels to establish new ways to engage diverse patients and overcome barriers to participation in our trials. -Jeanine Bortel, Pfizer Clinical Study Group Lead
“The HEAL Sessions proved an inspiring forum that reinforced old and uncovered new commonalities, obstacles, and unique experiences of Black and brown patients, and the vast gaps in access to clinical trials as an option to consider. I left each session moved and motivated. I’m so thrilled that the ANGEL Advocates are among our partners whose insights are being applied to Pfizer’s effort to improve the overall trial experience for future patients.” -Carmen White, Pfizer Director, Multicultural Participant Experience
“The HEAL sessions with the Tigerlily ANGEL Advocates were impactful, moving and exactly what we (Pfizer) needed to truly hear and understand the voice of our patients, but more specifically women of color. Within our work on equity and inclusion in clinical research I am committed to carrying forward our learnings from these sessions, and the voices of these beautiful women. I look forward to a continued partnership with Tigerlily and the ANGEL Advocates.” -Sandra Amaro, Pfizer Global Clinical Trial Diversity Team Lead
Learnings from the workshops touched everyone who was a part of the sessions and created a powerful HEALing space from which we will work together with Tigerlily ANGEL Advocates and people of color around the nation and the world, to better reach communities and to uncover solutions that result in greater health equity for all.
1. Surbone, A. & Halpern, M.T. Unequal cancer survivorship care: addressing cultural and sociodemographic disparities in the clinic. Support Care Cancer (2016) 24: 4831. https://doi.org/10.1007/s00520-016-34354
2. Jaffee, E. M. et al. (2017). Future cancer research priorities in the USA: A Lancet Oncology Commission. Lancet Oncol, 18, e653-706.
3. American Cancer Society. Breast Cancer Facts & Figures 2019-2020. https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/breast-cancer-facts-and-figures/breast-cancer-facts-and-figures-2019-2020.pdf. Accessed September 23, 2020
4. Wheeler, S. B., Reeder-Hayes, K. E., & Carey, L. A. (2013). Disparities in Breast Cancer Treatment and Outcomes: Biological, Social, and Health System Determinants and Opportunities for Research. The Oncologist, 18(9), 986-993. doi:10.1634/theoncologist.2013-0243
5. Surbone, A. & Halpern, M.T. Unequal cancer survivorship care: addressing cultural and sociodemographic disparities in the clinic. Support Care Cancer (2016) 24: 4831. https://doi.org/10.1007/s00520-016-34354