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Detección temprana de enfermedades huérfanas: la estrategia de Cali para proteger la vida desde el primer día
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La Secretaría Distrital de Salud Pública de Cali y PTC Therapeutics Colombia S.A.S. sellaron una alianza estratégica para robustecer el tamizaje neonatal para la detección temprana de enfermedades huérfanas, con el objetivo de garantizar tratamientos oportunos y un sistema de salud más equitativo. La estrategia busca reducir las brechas en cobertura y acceso que persisten en Colombia, pese a la existencia de la Ley 1980 de 2019.
El memorando de entendimiento firmado el 26 de agosto de 2025 marca un hito en la gestión sanitaria de Cali. Bajo el liderazgo del alcalde Alejandro Eder, la ciudad impulsa acciones dirigidas a la población más vulnerable, situando a los recién nacidos en el centro de la política pública.
La alianza con PTC Therapeutics permitirá que cada niño sea evaluado desde el nacimiento para identificar patologías poco frecuentes, muchas de ellas genéticas, que pueden comprometer la calidad y expectativa de vida si no son detectadas de forma temprana.
Los objetivos para la detección temprana de enfermedades huérfanas del acuerdo son claros:
- Iniciar tratamientos oportunos para reducir la progresión de enfermedades.
- Prevenir complicaciones que generen discapacidad o mortalidad.
- Optimizar la gestión del riesgo en salud y los recursos del sistema.
- Mejorar la calidad de vida de los niños y sus familias.
“Con este acuerdo damos un salto cualitativo en la prevención de enfermedades congénitas y metabólicas, asegurando que ninguna enfermedad huérfana pase desapercibida y que cada diagnóstico se traduzca en atención oportuna y de calidad”, afirmó Germán Escobar Morales, secretario Distrital de Salud Pública de Cali.
Brechas del tamizaje neonatal en Colombia
Aunque la Ley 1980 de 2019 establece la obligatoriedad del tamizaje neonatal, la realidad del país muestra una cobertura limitada y heterogénea. Entre las principales barreras se encuentran:
- Baja cobertura y falta de equidad en el acceso, especialmente en zonas apartadas.
- Procesos poco estandarizados que dificultan la homogeneidad en la atención.
- Escasa coordinación entre EPS, IPS y laboratorios.
- Limitaciones en la capacitación del talento humano y en la gobernanza sanitaria.
Estas deficiencias reducen el impacto de una intervención clave, cuyo valor radica en realizarse en las primeras horas de vida, cuando los resultados pueden cambiar de manera radical el pronóstico infantil y la eficiencia del sistema de salud.
Estrategia local con impacto nacional
Con esta iniciativa, Cali no solo responde a un mandato legal, sino que también busca convertirse en referente nacional en la atención temprana de enfermedades huérfanas. La estrategia incluye:
- Movilización de EPS, IPS y hospitales para implementar tamizajes de manera masiva.
- Diseño de una ruta distrital de atención ágil para los casos diagnosticados.
- Capacitación especializada del talento humano en salud.
- Fortalecimiento institucional para garantizar seguimiento integral.
- Reforzamiento de la gobernanza sanitaria alrededor del tamizaje neonatal.
Colaboración público-privada: un modelo replicable
La participación de PTC Therapeutics aporta conocimiento técnico y respaldo internacional. Según Jorge Serrano, director ejecutivo de la compañía para la región andina, “nuestro compromiso es aportar conocimiento y asistencia técnica que fortalezca las capacidades locales. Creemos que la colaboración público-privada es una alternativa para lograr que más niños reciban un diagnóstico temprano”.
Este modelo de cooperación plantea un camino replicable para otras ciudades y departamentos, en un país donde las enfermedades huérfanas representan un reto creciente en términos de detección, cobertura y sostenibilidad financiera.
Un liderazgo con enfoque preventivo
La Secretaría de Salud de Cali ha incorporado la visión de que la prevención temprana salva vidas y optimiza recursos. Acciones como el tamizaje neonatal son coherentes con el esfuerzo distrital por abordar problemáticas de alta carga social, como la salud mental, el cáncer y la nutrición, reforzando el principio de la salud como derecho universal.
La meta de la administración distrital es que cada diagnóstico positivo se traduzca en atención de calidad, con acompañamiento integral a las familias y un sistema que priorice la equidad.
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