(In)coherence between Chagas disease policy and the experiences of those affected in Mexico: The need for a...

Chagas disease, caused by the parasite Trypanosoma cruzi, remains a significant public health challenge in México, symbolizing systemic neglect in healthcare. Despite longstanding efforts to control its transmission, there are critical gaps in the alignment of public health policies with the lived experiences of affected individuals. This study examines these dissonances by analyzing qualitative interviews with 61 individuals diagnosed with T. cruzi and reviewing relevant Mexican public health regulations, including national standards and action programs. Findings reveal that most diagnoses occur incidentally, such as during blood donation or vector control campaigns, with minimal active case detection at the primary healthcare level. Affected individuals often encounter insufficient follow-up care, significant barriers to treatment, and misinformation that exacerbates psychological distress. Among the 14 participants who received etiological treatment, access was frequently due to individual persistence rather than systemic support, highlighting inequities in healthcare delivery. Additionally, structural barriers, including economic constraints and insufficient local healthcare infrastructure, further limit access to timely diagnosis and treatment, particularly in rural areas. Policy gaps include the absence of universal T. cruzi testing for pregnant individuals, lack of vertical transmission prevention strategies, and inadequate communication between healthcare providers and patients. Current public health initiatives disproportionately prioritize vector control and blood bank screening, neglecting the broader social and economic challenges faced by those already diagnosed. The study underscores the urgent need for a transdisciplinary approach to Chagas disease management in México, integrating biomedical, sociocultural, and policy perspectives. Recommendations include implementing universal prenatal screening for T. cruzi, enhancing health communication strategies, reframing Chagas as a manageable condition to reduce stigma, and improving follow-up care protocols. Addressing these challenges requires intersectoral collaboration and an inclusive approach that values the lived experiences of affected communities. By bridging the gap between policy and practice, this research contributes to the development of holistic strategies that not only control Chagas disease transmission but also improve the quality of life for those already impacted. These insights are essential for informing public health reforms in México and other endemic regions, advancing equity and effectiveness in neglected tropical disease management.