Appraisal of primary immunodeficiencies in Latin America and the Caribbean using the IPOPI PID Life Index - where are we now?

Objective: Analyse the implementation of the 6 Principles of Care (PoC) for primary immunodeficiencies (PIDs) in Latin America and the Caribbean countries. Methodology: Data was extracted from the IPOPI PID Life Index, an interactive tool measuring how it is to live with a PID in the 13 countries in Latin America and the Caribbean (Argentina, Bolivia, Brazil, Chile, Ecuador, El Salvador, Honduras, Mexico, Paraguay, Peru, Puerto Rico, Uruguay and Venezuela). Results: Care for PIDs in the region varies greatly. Low diagnostic rates and limited diagnostic test options are a reality for the region. Almost all countries provide certain therapies for the treatment of PIDs, mostly anti-infectious therapies, immunoglobulin replacement therapies and vaccines. Biological therapies and curative treatments are less frequent in the countries covered. Universal health coverage for people living with PIDs remains heterogeneous and incomplete. Specialised centres and registries are also heterogeneously implemented. National organisations representing patients with PIDs exist in almost all countries, mainly focussing on general and medical awareness raising, and patient support through social activities. Discussion and conclusion: PID care in Latin America and the Caribbean is steadily becoming a reality for many people living with PID. There have been significant improvements in terms of diagnosis, treatment and care in the region over the past decades. Still, there are significant inequalities across the different countries for the 6 PoCs for PID analysed. Joint efforts of medical specialists and patient organizations must continue to ensure an optimal environment for people living with PIDs in the region.