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29 de marzo de 2024
mala noticia
Confirman que Aquiles no podrá recibir el tratamiento que necesita jueves 17 de noviembre de 2016 19:22
El tema se instaló en la agenda mediática y pronto todos los niveles del Estado se comprometieron en ayudar a Aquiles Donato , el bebé de siete meses que padece Atrofia Muscular Espinal (AME) y lucha por su vida en el Hospital Español de Rosario. Los tiempos se aceleraron y finalmente este miércoles se celebró la reunión entre funcionarios, representantes del laboratorio Biogen de Estados Unidos y miembros de Fame, la agrupación de padres con hijos afectados por la enfermedad. Pero los resultados no fueron los esperados: se supo que la droga necesaria para el tratamiento todavía no recibió la aprobación en ningún país del mundo.
Uno de los padres que participó del encuentro explicó que en Argentina no hay “ni vacunas, ni tratamientos que el laboratorio pueda suministrarle a Aquiles para su enfermedad”. El motivo, según detallaron, es que el laboratorio Biogen de Estados Unidos, todavía está tratando de conseguir la aprobación de la FDA (Agencia de Alimentos y Medicamentos o Agencia de Drogas y Alimentos) para suministrar la droga. Otras fuentes, sin embargo, fueron más pesimistas y marcaron que, llegado el caso, el tratamiento tampoco sería aplicable para el bebé rosarino.
Tras la reunión se informó que Hospital Garrahan lo único que tiene a su alcance “es trabajar en estabilizar a los chicos que padecen esta enfermedad para poder extender el período de vida”.
La falta de medicación en Argentina no responde a la negativa del laboratorio ni a la falta de voluntad política por conseguirla. El problema es que todavía no se distribuye en ningún lugar del mundo por encontrarse en fase de prueba con algunos resultados disímiles.
El pasado lunes los padres de Aquiles coparon la agenda mediática con la intención de llegar hasta el presidente de la Nación para conseguir la droga que puede salvar al bebé. Sin embargo, después de la reunión, las expectativas parecen haber bajado y ahora la recomendación desde Fame es buscar estabilidad para el niño y luego evaluar si toleraría el traslado al Garrahan donde podría ser sometido a un tratamiento que lo ayude a extender su tiempo de vida.