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Ley para enfermedades raras en Chile: un avance estructural tras más de una década de espera
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El presidente Gabriel Boric promulgó oficialmente la ley el pasado viernes, destacando que “lo que no conocemos no se puede sanar, por eso este es un primer paso tremendamente importante”. La legislación responde a una deuda histórica del sistema sanitario chileno frente a las personas afectadas por enfermedades raras en Chile cuya baja prevalencia dificulta su diagnóstico, tratamiento y seguimiento.
La ley contempla:
- Creación de un listado oficial de enfermedades raras.
- Implementación de un Registro Nacional de Pacientes, que servirá como base para la formulación de políticas públicas, planificación sanitaria y gestión de recursos.
- Conformación de una comisión técnica asesora del Ministerio de Salud, con el mandato de estructurar un plan de acción estatal para estas condiciones.
Enfermedades raras en Chile, más de un millón de personas afectadas
Se estima que entre el 6 % y el 8 % de la población podría estar viviendo con una enfermedad rara. En términos absolutos, esto equivale a cerca de un millón de personas en Chile, según datos oficiales del Gobierno.
Estas condiciones, más de 8.000 enfermedades distintas según la clasificación internacional, presentan desafíos comunes: diagnósticos tardíos, falta de información, escasez de especialistas, altos costos en terapias y ausencia de cobertura estatal en múltiples casos.
Una de las barreras más críticas es la llamada “odisea diagnóstica”, que puede extenderse hasta 8 años en promedio. Esta demora compromete no solo la calidad de vida del paciente, sino también la posibilidad de implementar tratamientos eficaces en etapas tempranas.
Diagnóstico temprano y tratamientos innovadores: líneas de acción ya en curso
Uno de los pilares que sustentan esta ley es la incorporación progresiva de tecnologías y mecanismos de financiamiento innovadores para enfermedades específicas. Un ejemplo citado por las autoridades es el abordaje de la Atrofia Muscular Espinal Tipo 1 (AME-1), donde el Ministerio de Salud ha implementado tratamientos mediante esquemas de riesgo compartido, una modalidad que implica acuerdos con la industria para pagar por resultados terapéuticos concretos.
Además, se avanza en la pesquisa neonatal ampliada, que permitirá detectar 26 enfermedades poco frecuentes, 24 de ellas nuevas para el tamizaje actual. Esta estrategia busca mejorar la detección precoz y reducir las consecuencias clínicas y económicas del diagnóstico tardío.
Equidad territorial y enfoque de derechos
La ley tiene un enfoque inclusivo, especialmente diseñado para reducir brechas geográficas. “Ninguna persona, sin importar su lugar de nacimiento o donde viva, debiera enfrentar sola una enfermedad. Más aún cuando esta es poco frecuente, difícil de diagnosticar y de tratar”, afirmó el presidente Boric.
A través del Sistema Nacional de Cuidados, el gobierno también plantea articular una red de apoyo no solo para los pacientes, sino también para las personas cuidadoras, quienes muchas veces asumen responsabilidades sin acompañamiento institucional ni compensación económica.
Según Boric, “cuando hay un niño o niña con una enfermedad poco frecuente, hay generalmente una mujer que cuida, y esa mujer que cuida está trabajando”, en alusión a la carga de cuidado no remunerado, históricamente invisibilizada en los sistemas de salud y protección social.
De la moción a la política pública: 14 años de recorrido legislativo
El proyecto de ley fue presentado inicialmente en 2011 como moción parlamentaria, y durante más de una década enfrentó dilaciones legislativas. Fue recién en 2024, durante la Cuenta Pública del presidente Boric, que se anunció la inclusión del tema en la agenda prioritaria de salud. Las indicaciones del Ejecutivo se presentaron en junio de ese mismo año y, tras pasar por ambas cámaras legislativas, la norma fue aprobada por unanimidad en abril de 2025.
La promulgación de esta ley representa no solo una victoria para los colectivos de pacientes, sino también un cambio estructural en la visión del Estado respecto a la salud de poblaciones pequeñas, pero profundamente vulnerables.
Implementación efectiva y evaluación continua
La entrada en vigencia de la ley abre un nuevo escenario para la atención de enfermedades huérfanas en Chile. Sin embargo, su éxito dependerá de:
- La asignación efectiva de presupuesto para el Registro Nacional y los programas asociados.
- La capacitación continua del personal médico, especialmente en regiones apartadas.
- El fortalecimiento de las alianzas público-privadas para el acceso a tecnologías diagnósticas y terapéuticas de alto costo.
- El seguimiento mediante mecanismos de evaluación y control social, garantizando la participación de pacientes y familias en la construcción de políticas públicas.
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