Leveraging the power of allyship in the breast cancer community
Living Beyond Breast Cancer’s third annual Patient Advocacy Summit focused on using allyship to shape a future where equity and empowerment rule.
Living Beyond Breast Cancer (LBBC) hosted its third annual Patient Advocacy Summit on the evening of May 16, 2022, on a virtual platform. The summit brought together current and former advocates from LBBC's Leadership Volunteer programs: the Hear My Voice Metastatic Advocacy Program, the Young Advocate Program, and the Breast Cancer Helpline Volunteers, among other registered participants. Arin Ahlum Hanson, LBBC's director of outreach, moderated a panel of LBBC advocates—Toni Willis, Deb Ontiveros, Lindsay Vlaminck, Cheryl Law, and Jae Troskosky—and led the audience through a compelling and multi-faceted discussion on patient advocacy and the significance of allyship.
Centering and offering a seat at the table
At the core of the summit was the crucial concept of centering, addressed by Dennis Maurice Dumpson, founder and principal consultant of #InvestBLK. Dennis’ presentation highlighted the imperative of centering marginalized voices, framing it as an essential step towards amplifying their experiences. By drawing parallels with a choir, Dennis illustrated that while every participant in the advocacy realm plays a vital role, centering ensures that those who have historically been marginalized are given the prominence they deserve. In a world where inclusion is celebrated, centering becomes an invaluable tool for fostering change and empowering communities. Patient advocates, entrusted with the responsibility of supporting and advocating for marginalized populations, hold the key to meaningful impact by listening, learning, and advocating for change.
Perspectives on allyship: Insights from the panelists
The panelists, through their diverse perspectives and lived experiences, provided insights into what it means to be an ally within the breast cancer community. Toni Willis, Deb Ontiveros, Lindsay Vlaminck, Cheryl Law, and Jae Troskosky shared their personal journeys and shed light on the challenges that come with allyship. They discussed the complicated balance of personal responsibilities while offering support to others. Confronting one's privilege and acknowledging uncomfortable truths were also recognized as essential steps in becoming a genuine ally. As Deb explained, her advocacy transformed as she confronted the issues within her own community, making a conscious effort to address them while remaining self-aware and receptive to personal biases.
Cheryl spoke about the transformative power of overcoming challenges and expanding comfort zones. She shared that an ally recognized her potential and encouraged her to step into uncharted territories by applying for LBBC's young advocate program: “So, in a way, she was an ally to me, and this has allowed me to be an ally to others.”
The summit also highlighted how patient advocates serve as allies in leveling the playing field for individuals affected by breast cancer. Lindsay spoke of recent achievements in patient advocacy, specifically the successful efforts in advocating for insurance billing code changes regarding the DIEP flap breast reconstruction option. By uniting and amplifying voices, advocates demonstrated the importance of choice and equitable access to this vital reconstruction option, particularly for communities of color and those facing socio-economic challenges.
Allyship lies at the heart of LBBC's mission, a fact underscored by Catherine Ormerod, LBBC's executive vice president for strategy and mission. Recognizing the organization's role as a “department store of breast cancer support, and by that I mean we want to serve all ages, all stages, young women, older women, women of color, LGBTQ, and others,” Catherine emphasized the necessity of partnerships with other organizations, groups, and individuals to fulfill LBBC's overarching goal of serving diverse populations. With limited resources and a commitment to inclusivity, LBBC relies on alliances to provide comprehensive services and reach all those in need.
Igniting the conversation
As Lynn Folkman, LBBC's manager of community engagement, aptly reminded the summit's participants, finding all the answers in a single gathering is an ambitious task. However, LBBC's third annual Patient Advocacy Summit fostered an environment of lively and engaging discussion. By centering the voices of the marginalized, challenging norms, and promoting allyship, LBBC and its advocates continue to shape a future where equity and empowerment lead the conversation.
If you are interested in learning more about patient advocacy and how you can get involved, LBBC’s Leadership Volunteer programs are a wonderful place to start.
Sign up to receive emotional support, medical insight, personal stories, and more, delivered to your inbox weekly.