VISIBILITY OF METASTATIC BREAST CANCER HAS BEEN LED BY CONSUMER ADVOCACY. For 27 years, BCNA has provided a voice for people affected by breast cancer, including those living with MBC, and their families. With its network connecting over 250,000 people, BCNA has driven MBC advocacy for more targeted research, subsidised life-prolonging medicines and precision diagnostics such as genomic profiling, and specialist nursing and survivorship care models. To address the unique and complex care needs of people living with MBC, BCNA has developed tailored information and resources, supportive care services, collaborative research initiatives, and expanded opportunities for MBC- consumer partnerships and engagement. BEING COUNTED IS FUNDAMENTAL TO BEING CARED FOR. While treatable, MBC remains incurable and requires lifelong treatment. Significant advancements in medicines, technologies and research are now helping people live well with MBC for an average of five years. 2 With emerging and effective treatments, some people are living for more than a decade. However, equitable access to quality care and life-prolonging therapies varies widely, often shaped by social, economic and geographic factors that continue to influence survival outcomes. People living with MBC have complex, lifelong care needs that are often misunderstood or overlooked. Historical gaps in MBC data have led to gaps in care experiences and health outcomes. There is still a shortage of coordinated multidisciplinary care that results in unmet financial, physical and psychological needs. Alongside specialised MBC clinical care, holistic and person-centred approaches that promote community and economic participation are fundamental to reducing stigma and isolation commonly reported by people living with MBC. Cancer data registries are considered the ‘bedrock of global cancer care’ 3 because, when designed and used effectively, they can provide the evidence needed to inform every stage of the cancer continuum. Cancer registries are expected to collect and report comprehensive population-level data to guide prevention and screening programs, policy reform, research funding, clinical trials, and workforce and service planning. However, most registries are not yet equipped to capture the full patient experience - from diagnosis through to treatment and recurrence - leaving significant gaps in understanding disease burden, long- term outcomes, and survivorship needs.
After 13 years of invisibility living with metastatic breast cancer, I am finally being counted. For too long, it felt as though my life—and the lives of others with MBC—did not matter to the health system. Being counted is more than a statistic; it is an acknowledgment of our humanity, our resilience, and our worth. It’s about dignity, visibility, and validation. – Lisa Tobin
09
Made with FlippingBook - professional solution for displaying marketing and sales documents online