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Lupus: la urgencia de diagnosticar a tiempo una enfermedad silenciosa y devastadora
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El lupus eritematoso sistémico (LES) es una enfermedad autoinmune, inflamatoria y multisistémica que afecta a más de cinco millones de personas en el mundo. En Colombia, se estima una prevalencia de 91,9 casos por cada 100.000 habitantes, lo que equivale a aproximadamente 41.804 personas diagnosticadas, según datos del registro nacional de salud 2012–2016 publicados en la revista Lupus.
A pesar de su impacto potencialmente letal y de los efectos devastadores sobre órganos vitales como los riñones, el corazón o el sistema nervioso, el lupus continúa siendo una enfermedad subdiagnosticada, mal entendida y, en muchos casos, invisibilizada dentro del sistema de salud.
Diagnóstico tardío: una barrera crítica en el sistema de salud
Una de las principales dificultades que enfrentan los pacientes es el tiempo prolongado que transcurre entre la aparición de los primeros síntomas y la confirmación diagnóstica. De acuerdo con la Lupus Foundation of America, este intervalo puede ser de entre 3 y 7 años, dependiendo de la región, el acceso al sistema y la capacitación del personal médico.
Este retraso en el diagnóstico no es solo clínicamente riesgoso; también implica una mayor carga emocional, funcional y económica para los pacientes, quienes, en su mayoría, son mujeres jóvenes entre los 15 y 44 años, en plena etapa productiva de sus vidas.
Impacto sistémico: del daño orgánico a la exclusión social
El LES es una enfermedad de curso impredecible que puede afectar múltiples órganos, pero también altera de manera significativa la calidad de vida. Fatiga crónica, dolor articular, erupciones cutáneas, síntomas neuropsiquiátricos y deterioro renal progresivo son algunas de las manifestaciones más comunes.
Pero su impacto va más allá de lo clínico: genera ausentismo laboral, pérdida de productividad, alteraciones en la salud mental y una alta dependencia de cuidadores, factores que configuran un verdadero desafío para los sistemas de salud, seguridad social y protección laboral.
Hacia un modelo de atención más integral y resolutivo
En el marco del Día Mundial del Lupus, AstraZeneca Colombia reiteró el llamado a fortalecer el abordaje integral de esta enfermedad. La compañía farmacéutica promueve una carta de principios construida con asociaciones de pacientes, profesionales de salud y sociedades científicas, publicada recientemente en Clinical and Experimental Rheumatology.
Entre las principales recomendaciones de este documento están:
- Capacitar de forma continua a profesionales de salud sobre el reconocimiento temprano del LES.
- Establecer criterios diagnósticos uniformes y guías de manejo accesibles para el primer nivel de atención.
- Incorporar tecnologías como telemedicina para el seguimiento y coordinación entre especialistas.
- Reducir el uso prolongado de corticoides y garantizar acceso a terapias innovadoras basadas en evidencia.
- Incluir apoyo psicológico, promoción del autocuidado y programas de actividad física adaptada.
Fragmentación del sistema y falta de articulación
Uno de los principales obstáculos identificados por las asociaciones de pacientes es la fragmentación en la atención. Las personas con lupus deben navegar por múltiples niveles del sistema, con escasa coordinación entre generalistas, reumatólogos, nefrólogos, dermatólogos y otros especialistas, lo cual conlleva interrupciones en los tratamientos y desajustes terapéuticos frecuentes.
La falta de integración entre aseguradores (EPS) y prestadores (IPS), sumada a la baja disponibilidad de servicios de atención especializada en regiones no capitales, agrava la inequidad y dificulta la adherencia al tratamiento.
Perspectiva desde la industria médica
El Dr. Efraín Esteban, Gerente Médico de Respiratorio e Inmunología para el Clúster Andino de AstraZeneca, subrayó la importancia de escuchar a los pacientes y cocrear estrategias con ellos:
“El lupus no puede seguir siendo invisible. Merece un abordaje empático, oportuno y centrado en las necesidades reales de quienes la viven”, afirmó.
Para el vocero, uno de los ejes clave debe ser el acceso temprano a biológicos e inmunomoduladores, que han demostrado mejoría en los desenlaces clínicos y reducción en el daño acumulado, especialmente cuando se inician en fases tempranas de la enfermedad.
Oportunidades para Colombia: prevención, registro y talento humano
En Colombia, el LES representa una oportunidad para avanzar en tres frentes estratégicos:
Registro nacional actualizado: Un sistema consolidado de información permitiría monitorear casos, prevalencia, mortalidad y patrones regionales, facilitando la toma de decisiones.
Rutas de atención específicas: Integrar al lupus en las rutas de atención integral de enfermedades crónicas no transmisibles podría mejorar su abordaje multidisciplinario.
Formación continua en atención primaria: El fortalecimiento del primer nivel es crucial para mejorar los tiempos de referencia y detección temprana, especialmente en zonas rurales o de difícil acceso.
Visibilizar el lupus para garantizar derechos
A pesar de los avances científicos, el lupus sigue siendo una enfermedad rodeada de silencios institucionales. Su baja visibilidad impide que se le otorgue prioridad en políticas públicas, en modelos de atención integral y en sistemas de financiación sostenibles.
Transformar este panorama requiere un enfoque intersectorial y centrado en el paciente, que combine atención médica basada en evidencia con herramientas sociales, psicológicas y comunitarias que respalden la autonomía y el bienestar de quienes conviven con esta enfermedad.
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