Cystic fibrosis in Latin America—Improving the awareness

Abstract

The burden of cystic fibrosis (CF) in Latin America is being increasingly recognized and is significant compared with other regions of the world. In this short communication, we assess the current situation in some Latin American countries and make suggestions for possible directions for future focus. We discuss the work that remains in deciphering how the various genetic, environmental and medical factors interact and influence outcomes in different ethnic groups. We also consider the need for consistency in both research and access to services across Latin America, including CF registries, neonatal screening programs, access to specialized CF healthcare practitioners, transition to adult clinics and treatment regimens. Progress in these areas is likely to build on the advances to date, and improve the lives of patients in Latin America who are affected by this debilitating and life-limiting disorder.

Cystic fibrosis in El Salvador

“…Additionally, lack of medication, poor nutrition, and increased home smoke exposures likely contribute as well to poorer outcomes. Because Brazil, Mexico, Chile, and Argentina are the only Latin American countries with an established CF registry, standardized data are difficult to study in much of the region . Progress is possible through a focus on cost effective treatments.…”

“…Despite substantial improvements in morbidity and mortality in the US and Western Europe over the past 50 years, cystic fibrosis (CF) continues to be under recognized and inadequately treated in developing nations . With a total incidence in North America and Europe of about 1:2000–3500 live births, reported incidence in Latin America varies from 1:1600–14000 live births, depending on the genetic combinations of African, Caucasian, and Native American decent . The outcomes of patients with CF have not been objectively quantified in many Latin American countries and an accurate representation of the morbidity and mortality is poorly understood.…”

Frecuencia de las mutaciones más comunes del gen CFTR en pacientes peruanos con fibrosis quística mediante la técnica ARMS-PCR

“…En Latinoamérica, el subdiagnóstico de FQ ocurre a causa de la falta de sospecha clínica y/o elementos adecuados para el diagnóstico (6) . En el Perú, la FQ es una enfermedad infradiagnosticada y con limitaciones de acceso a exámenes de diagnóstico como la prueba de sudor y estudios moleculares; así como el tamizaje neonatal con la prueba de tripsina inmunoreactiva (IRT) que se realiza sistemáticamente en países del hemisferio norte (7) .…”

Nutritional characterization of children and adolescents with cystic fibrosis

“…Así, la incidencia puede variar desde 1/2.500 en Australia a 1/10.0000-35.0000 en Japón. En Latinoamérica las estimaciones sugieren que la FQ afecta entre 1/6.000- (8) 14.000 nacidos vivos . En Paraguay, según datos preliminares, aún no publicados por el Programa Nacional de Detección Neonatal-Sub Programa Fibrosis Quística, la incidencia sería de 1/4.963.…”