HTA plays an increasingly important role in Latin American countries. Each country needs to record its current implementation status and identify components for improvement. Duplication of efforts can be reduced if international collaboration is integrated into national HTA implementation.
Patients with rare diseases across the world struggle to access timely diagnosis and state-of-the-art treatment and management of their conditions. Several recently published reviews highlight the importance of country efforts to address rare diseases and orphan drugs policy comprehensively. However, many of these reviews lack depth and detail at the local level, which we believe is necessary for rare disease advocates to identify and prioritize opportunities for strengthening each country's policy framework. We asked leading patient advocates from civil society organizations their views on rare disease public policy in Argentina, Brazil, Chile, Colombia, Mexico, and Peru with a focus on whether specific laws and regulations in these six Latin American countries have been promulgated. From December 2018 to March 2019 we supplemented their perspectives with evidence from accessible literature using key search terms. For each country, we prepared a detailed analysis on how laws or other policy initiatives took shape and the steps taken since to implement them. This allowed us to identify five broad policy categories for subsequent analysis: national laws, national regulations, health system incorporation of rare disease treatments, care delivery, and patient engagement. By describing the different approaches, challenges and timelines across six countries, our research demonstrates that strengthening rare disease policy first requires a common understanding and local consensus of each country's recent past and current situation. Subsequent analysis based on a set of common policy dimensions led us to where we believe salient opportunities lie for each of these countries to strengthen their overall policy framework for rare disease patients.
Studies evaluating the influence of health literacy on patient behavior and outcomes suggest a positive relationship between health literacy and health knowledge, health behaviors, and health status. In Latin American countries, studies assessing health literacy are few, regional, and demonstrate considerable variation, with reported rates of adequate health literacy ranging from 5.0% to 73.3%. In this paper, we examine and explore the state of health literacy and efforts to promote it in Latin America. Key challenges to those efforts include socioeconomic inequality, social/geographic isolation, and cultural-, language-, and policy-related barriers, many of which disproportionately affect indigenous populations and others living in rural areas. Greater use of infographics, videos, and mobile apps may enhance health literacy and patient empowerment, especially when language barriers exist. This paper provides strategies and tools for tailored programming, examples of successful health literacy interventions, and policy recommendations to improve health literacy in Latin America, intending to spur additional discussion and action. Centrally organized collaboration across multiple sectors of society, with community involvement, will enhance health literacy and improve health and well-being across Latin America.
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