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Chile abre Oficina Nacional de Condiciones Crónicas Complejas
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Las autoridades sanitarias anunciaron la creación de la Oficina Nacional de Condiciones Crónicas Complejas (CCC), en una reunión con representantes de la Federación de Enfermedades poco Frecuentes Chile, la Federación Chilena de Enfermedades Raras y la Alianza Chilena de Agrupaciones de Pacientes, además de parlamentarios.
El Ministerio de Salud (Minsal) detalló que dicha oficina tendrá el objetivo de determinar las estrategias y líneas de acción prioritarias de las enfermedades raras, sumado a que se cumpla el resto de los requisitos determinados para ser evaluados por la Comisión Técnica Asesora para la validación de tratamientos farmacológicos de alto costo sin cobertura (MAC).
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Cristóbal Cuadrado, el subsecretario de Salud Pública, afirmó que hay distintos tipos de enfermedades que pueden afectar en conjunto de un 6 a 8% de la población y que, por su diagnóstico difícil, son muchas veces no reconocidas.
“Un 95% de estas enfermedades no tienen una terapia conocida y por lo tanto son patologías que pueden llevar a situaciones que son muy dramáticas para las personas que las sufren y también para sus familias”, agregó el funcionario.
En la actualidad, Chile cuenta con Ley 20.850, que crea un Sistema de Protección Financiera para Diagnósticos y Tratamientos de Alto Costo, los que generalmente están relacionados a estas enfermedades.
Durante la actividad se plantearon los desafíos a corto y largo plazo que como país se encuentran la necesidad de contar con una definición para este grupo de enfermedades que permita su identificación y vigilancia, la institucionalización y la implementación de un sistema nacional de registro.
Entre esos desafíos se encuentran la necesidad de contar con una definición para este grupo de enfermedades que permita su identificación y vigilancia, la institucionalización y la implementación de un sistema nacional de registro.
Alejandro Andrade, presidente de la Federación Chilena de enfermedades raras, mencionó que estos proyectos son de alta importancia para buscar la visibilizarían de estas comunidades, además de designar una “autoridad que se haga cargo y sea competente y responsable de las situaciones que ocurren”.
En el 2022, se constituyó la Mesa de trabajo para el abordaje de Enfermedades Raras, Poco Frecuentes, Huérfanas o de Diagnóstico Complejo (ER-EPOF-EH) con participación de profesionales del Ministerio de Salud y representantes de agrupaciones de pacientes.
En esa ocasión, se tuvo el propósito de contribuir a la definición de una política tendiente a mejorar la calidad de vida de las personas con estas patologías.
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