Breast Cancer Patient Advocacy: Challenges and Opportunities in Low- and Middle-Income Countries

PURPOSE Breast cancer advocacy movements, driven by advocate-led civil society organizations (CSOs), have proven to be a powerful force for the advancement of cancer control in high-income countries, playing a critical role in providing peer support, raising awareness, reducing stigma, educating the public, raising funds, influencing policy, and affecting national cancer research agendas by bringing the public’s concerns about cancer to policymakers and the medical community. Breast cancer patient advocacy movements are growing in low- and middle-income countries (LMICs) in response to an increasing cancer burden and disparities in outcomes; however, there are few studies on the experiences and needs of advocate-led breast cancer CSOs in LMICs. METHODS We conducted a qualitative study using in-depth interviews and focus group discussions with 98 participants representing 23 LMICs in Eastern Europe, Central Asia, East and Southern Africa, and Latin America. RESULTS Despite geographic, cultural, and socioeconomic differences, the common themes that emerged across the 3 regions are strikingly similar: trust, knowledge gaps, stigma, sharing experiences, and sustainability. We identified common facilitators—training/education, relationship building/networking, third-party facilitators, communication—and barriers—mistrust, stigma, organizational fragility, difficulty translating high-income country strategies—to establishing trust, collaboration, and advancing cancer advocacy efforts. To our knowledge, our study is the first to describe the role coalitions and regional networks play in advancing breast cancer advocacy in LMICs across multiple regions CONCLUSION Our findings reflect the importance of investing in three-way partnerships between CSOs, political leaders, and health experts. When provided with information that is evidence based and relevant to their respective environments, as well as opportunities to engage and network, advocates are better equipped to pursue evidence-based programs, advocate for appropriate solutions, and to hold their governments accountable to the commitments they make. Global and local actors can do more to create opportunities for education and engagement.