PID Life Index in Latin America: an analysis of the healthcare status of PID patients

Introduction: The IPOPI PID Life Index is a data platform developed by IPOPI (the International Patient Organisation for Primary Immunodeficiencies) that measures the status of PID healthcare national environments, through six key principles of care: diagnosis, treatment, specialized centres, universal coverage, national patient organisation, registries. Method: Comparative analysis of the calculated Index for the six principles of care, based on data submitted by eleven Latin American countries (Argentina, Bolivia, Chile, Ecuador, El Salvador, Honduras, Mexico, Paraguay, Puerto Rico, Uruguay, and Venezuela), from 2021 to 2023. Results: Our analyse goes along the six principles of care. Up to 15% of individuals with PIDs are diagnosed in these eleven countries, relying on biological and genetic diagnosis. Ten countries have a national patient organisation. Two have a national PID registry. Six out of eleven countries have specialized PID centres, four provide PID adult care, and three offer transition care. Ten out of eleven countries have access to biological and targeted therapies, although at very disparate levels. Four countries demonstrate access to immunoglobulins and curative treatments. Conversely, in the remaining countries the availability of immunoglobulin has a score under 40%, and five have no access to curative treatments. Additionally, eight out of eleven countries ensure less than 50% score for treatment coverage, leaving many families facing financial hardships in accessing treatment and care.
Conclusions: Given the significant disparities in PID healthcare across Latin America, the IPOPI PID Life Index data allows each country to address their specific challenges and needs in PID diagnosis, treatment, and management. It highlights the urgent need to improve diagnostic capacity and accessible treatment for all patients with PID in the region, through advocacy tools such as the WHO essential diagnostic and medicine lists, to expand plasma collection in LATAM countries to meet patients’ needs, to establish comprehensive data systems.

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