{"id":10819,"date":"2025-02-11T06:28:14","date_gmt":"2025-02-11T06:28:14","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2025\/02\/11\/pilar-mejias-madre-dos-hijos-con-ataxia-friedreich-sistema-prioriza-precio-farmaco-antes-que-los-pacientes\/"},"modified":"2025-02-11T06:28:14","modified_gmt":"2025-02-11T06:28:14","slug":"pilar-mejias-madre-dos-hijos-con-ataxia-friedreich-sistema-prioriza-precio-farmaco-antes-que-los-pacientes","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2025\/02\/11\/pilar-mejias-madre-dos-hijos-con-ataxia-friedreich-sistema-prioriza-precio-farmaco-antes-que-los-pacientes\/","title":{"rendered":"Pilar Mej\u00edas, madre de dos hijos con ataxia de Friedreich: \u00abEl sistema prioriza el precio del f\u00e1rmaco antes que a los pacientes\u00bb"},"content":{"rendered":"<p>Leemos en Discapacidad la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<div>\n<p>La <a href=\"https:\/\/www.20minutos.es\/noticia\/5661934\/0\/medicamentos-huerfanos-una-esperanza-para-las-enfermedades-raras\/\" title=\"Medicamentos hu\u00e9rfanos: una esperanza para las enfermedades raras lastrada por su escasa rentabilidad\">ataxia de Friedreich<\/a> es una <b>enfermedad neurodegenerativa rara<\/b> que afecta a la movilidad, el habla y la coordinaci\u00f3n, y que puede derivar en graves complicaciones card\u00edacas. Skyclarys es el primer y \u00fanico tratamiento aprobado para frenar su avance, pero en Espa\u00f1a, su acceso est\u00e1 bloqueado por las negociaciones entre el Ministerio de Sanidad y la farmac\u00e9utica Biogen. Pilar Mej\u00edas, presidenta de la Fundaci\u00f3n Almar y madre de dos hijos con esta patolog\u00eda, denuncia la falta de transparencia en las conversaciones y <b>la desesperaci\u00f3n de los pacientes ante la imposibilidad de recibir el medicamento<\/b>. \u00abEn Alemania y Francia los afectados ya lo est\u00e1n tomando, pero en Espa\u00f1a seguimos esperando\u00bb, lamenta en esta entrevista con <i>20minutos<\/i>.<\/p>\n<h1>No entendemos c\u00f3mo es posible que despu\u00e9s de casi un a\u00f1o a\u00fan no se haya fijado un precio para un medicamento esencial<\/h1>\n<h1>La educaci\u00f3n es un problema enorme. Los profesores no les facilitaban material adaptado<\/h1>\n<\/div>\n<p>Fuente: Discapacidad https:\/\/www.20minutos.es\/noticia\/5680928\/0\/pilar-mejias-madre-dos-hijos-con-ataxia-friedreich-sistema-prioriza-precio-farmaco-antes-que-los-pacientes\/<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Tambi\u00e9n Presidenta de la Fundaci\u00f3n Almar, denuncia el bloqueo en el acceso al \u00fanico tratamiento disponible.<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8],"tags":[],"class_list":["post-10819","post","type-post","status-publish","format-standard","hentry","category-noticias"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Pilar Mej\u00edas, madre de dos hijos con ataxia de Friedreich: &quot;El sistema prioriza el precio del f\u00e1rmaco antes que a los pacientes&quot; - 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