Evolving role of patient associations in shaping healthcare policies in Brazil

Abstract

Patient associations are civil society organizations that play a key role in supporting individuals undergoing long-term health treatments, particularly in developing countries. Most of them are also actively involved in defending patients' rights through initiatives that aim to develop and implement public policies focused on supporting care. Patient associations have grown increasingly professionalized, driven by serious issues regarding healthcare access and outcomes, especially in critical areas like oncology. In this article, we explore the evolving role of patient associations in the formulation of national health policies based on advocacy actions promoted by the Brazilian Federation of Philanthropic Institutions for the Support of Breast Health (FEMAMA), a civil society organization with over 19 years of experience and the biggest network of patient associations in the country, with more than 70 associates. FEMAMA is aligned with national medical societies and international guidelines, such as the World Health Organization's Global Breast Cancer Initiative and the Union for International Cancer Control, which aims to reduce the global burden of breast cancer through collaboration and strengthened health systems. Civil society mobilizations promoted by FEMAMA over the years have contributed to the implementation of structural public health policies, both for public and private health systems in Brazil. Initially focused on breast cancer, some of these achievements were later expanded to oncology as a whole, particularly benefiting patients relying on the public health system, which is the only healthcare access option for 71.5% of Brazilians. Over the years, patient associations have significantly influenced advances in oncology and general health public policy. However, advocacy is a continuous work, with goals that evolve alongside clinical, systemic, and socio-political developments.