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España activa plan de choque para garantizar cuidados 24 horas a pacientes con ELA avanzada
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El Gobierno de España, a través del Ministerio de Sanidad, anunció la aprobación de un Plan de Choque sociosanitario para atender de forma inmediata a personas con Esclerosis Lateral Amiotrófica (ELA) en fase avanzada. La medida, que será regulada mediante un Real Decreto, contempla una subvención directa de 10 millones de euros a la Confederación Nacional de Entidades con ELA (ConELA), con el fin de cubrir cuidados profesionales 24/7 en pacientes que requieran soporte ventilatorio y alimentación asistida.
Este plan, de carácter extraordinario y urgente, estará vigente hasta la implementación plena de la Ley 3/2024, aprobada en octubre del año pasado y orientada a garantizar derechos, prestaciones y tiempos de respuesta más ágiles para personas con ELA y otras enfermedades de alta complejidad.
Una respuesta institucional frente a una enfermedad sin cura
La ELA es una enfermedad neurodegenerativa, progresiva y actualmente sin tratamiento curativo. Su impacto clínico es devastador: la supervivencia media tras el diagnóstico oscila entre 3 y 5 años, y los pacientes requieren cuidados progresivamente intensivos en etapas avanzadas.
La ministra de Sanidad enfatizó el carácter humanitario y urgente del plan: “Sabemos que hay muchas familias que no pueden esperar. Que hay necesidades urgentes, diarias, cotidianas, que no entienden de trámites ni de plazos”, afirmó añadiendo que “mientras la ley sigue su camino para hacerse plenamente efectiva, desde el Ministerio de Sanidad teníamos claro que no podíamos quedarnos de brazos cruzados”.
Cuidados profesionales domiciliarios financiados por el Estado
La iniciativa contempla la contratación de personal cualificado que preste atención sociosanitaria a domicilio durante las 24 horas del día. Esto incluye no solo el recurso humano, sino también los costes de suministros, desplazamientos, alquileres o cualquier necesidad operativa que garantice continuidad y calidad en la atención.
El proceso de acceso al beneficio contempla la siguiente ruta:
- Validación clínica: Un profesional del Sistema Nacional de Salud certificará que el paciente cumple criterios clínicos (ELA avanzada, tetraplejia, ventilación asistida, entre otros).
- Trámite operativo: ConELA gestionará la contratación de cuidadores profesionales y la asignación de recursos necesarios.
- Supervisión y compatibilidad: Las ayudas serán compatibles con otras subvenciones públicas o privadas, y ConELA podrá subcontratar servicios siempre que cumplan con los requisitos legales y estén debidamente justificados.
La financiación se articula como una subvención directa de interés público, social y humanitario, conforme a lo dispuesto en el Real Decreto.
Transición ordenada hacia la Ley 3/2024
El Plan de Choque tiene un carácter complementario y transitorio, diseñado para cubrir el vacío operativo mientras se implementa la Ley 3/2024, cuyo objetivo estructural es mejorar la calidad de vida de personas con ELA y otras condiciones de alta complejidad e irreversibilidad.
Esta Ley, que fue aprobada por consenso parlamentario con fuerte respaldo ciudadano, contempla:
- La reducción de los tiempos administrativos para el reconocimiento de la discapacidad y la dependencia.
- La coordinación efectiva entre los sistemas sanitario y social, para agilizar la prestación de apoyos y servicios.
- El diseño de rutas asistenciales integrales centradas en la dignidad, la autonomía y el alivio del sufrimiento.
“Los tiempos administrativos no siempre coinciden con los tiempos clínicos de las personas, y en enfermedades como la ELA eso puede suponer una diferencia vital”, subrayó la ministra.
ConELA como eje articulador de la respuesta inmediata
La elección de ConELA como receptor y ejecutor de la subvención se fundamenta en su amplia implantación territorial, su trayectoria en el acompañamiento a familias y su capacidad operativa para identificar casos prioritarios.
El Ministerio de Sanidad destacó que esta colaboración busca asegurar que la ayuda “llegue donde tiene que llegar”, reduciendo las barreras para las familias que actualmente deben asumir de forma privada gran parte del costo del cuidado domiciliario especializado.
“Esta medida muy concreta, extraordinaria y complementaria ha sido diseñada pensando precisamente en quienes más lo necesitan”, afirmó la ministra.
Impacto sociosanitario de la ELA en cifras
- Más de 4.000 personas viven con ELA en España, según estimaciones de organizaciones de pacientes.
- El costo anual por paciente en fases avanzadas puede superar los 45.000 euros, gran parte de ellos asumidos por las familias.
- La enfermedad requiere intervenciones multidisciplinarias, incluyendo asistencia respiratoria, nutricional, fisioterapia, apoyo psicológico y cuidados paliativos.
La implementación de este Plan, aunque transitorio, representa un alivio significativo para los núcleos familiares más afectados.
Aprobación del real Decreto: plazo inmediato
El Ministerio de Sanidad informó que el Consejo de Ministros aprobará el Real Decreto en un plazo no mayor a un mes, con el objetivo de tener la resolución lista antes de finalizar julio. ConELA podrá entonces comenzar la ejecución del plan, que se estima beneficiará a centenares de personas que cumplen criterios clínicos de gravedad.
El plan contempla además una evaluación continua para garantizar su efectividad, trazabilidad y equidad territorial en la distribución de recursos.
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