ACTRIMS Forum 2021 – Invited Program

Abstract

Background: After an historical absence of data, studies on MS epidemiology in Latin America (LATAM) have consistently increased since the foundation of LACTRIMS in 1999. The socioeconomic and political health impact of MS in the region remains to be established. Objectives: To assess the presence of MS frequencies in the different regions of LATAM and its reflection in local health policies and neurological care and education on the disease. Methods: Thematic presentations from 10 biennial LACTRIMS meetings (2000-2019) and recent publications on Latin American epidemiology cited in PubMed (2012-2020) assessing content for societal effects and policy provided the framework for this study. Official statement of principles (SOP) from 16 MS organizations representing 14 different countries from the Latin American MS organizations Network (LATEM) were included. Since 2018, LATEM's positions derive from input led by ASOGEM (Guatemala);APEMED (Paraguay);ALEM (Colombia) and ABEM (Brazil). Other groups explored for SOP) were 'Renacer' (Dominican Republic), ESMUP (Peru), ALCEM and EMA (Argentina), EMUR (Uruguay), FEMMEX (Mexico) and FUCACEM (MS Central American and Caribbean Foundation). Determination of societal impact was assessed by the development of registered local neurological MS study groups, or events of significance including legal accomplishments or governmental determinations improving education and care of MS. Results: The MS International Federation and the WHO place the prevalence of disease for the majority of countries in LATAM from very low (0-5/100,000) to low-to-moderate (5.5-20/100,000). Two areas, a Monterrey's suburb in northeast Mexico (25° N), and Buenos Aires, Argentina (34° S) show moderate frequencies (30/100,000), while the highest prevalence in LATAM is noted in Puerto Rico (77.7/100,000). Countries with a large geographic extensions show zonal differences. Prevalence data from 15 countries is available. Only four national incidence studies: Panama, Uruguay, Chile and Argentina, exist. A study from the six Central American countries and three Spanish-speaking Caribbean country islands (Cuba, Puerto Rico and Dominican Republic) show high index of EDSS disability > 3.5 (37%) among the subjects included in these series, hence potentially reflecting into additional socioeconomic burden to the local communities. Eight CTRIMS national associations have developed in the region, all functioning as LACTRIMS' chapters. Another multinational study group from Central America and the Caribbean emerged recently as a forum (FOCEM). Recent virtual discussions emphasized every effort to avoid the COVID-19 pandemic to disrupt access to MS therapies in the region. The organizations play a determining role in preventing the indiscriminate approval by uninformed local health agencies of medications lacking safety and efficacy evidence, i.e. biosimilar products (ASOGEM). Conclusions: The emergence of MS in the Americas, despite its reportedly low epidemiologic frequencies, has affected importantly the socioeconomic health regional systems. Initiatives to integrate the neurological community with MS organizations and stakeholders to improve MS education, its management, and access to quality therapy in LATAM appear thus far to be a regionwide unifying tendency.