{"id":4115,"date":"2021-01-02T20:56:10","date_gmt":"2021-01-02T19:56:10","guid":{"rendered":"https:\/\/f101g.org\/el-acceso-a-los-medicamentos-en-el-contexto-de-las-enfermedades-raras-por-el-prof-dr-g-m-b-sandy-tubeuf-y-romain-alderweireldt\/"},"modified":"2026-08-11T14:12:20","modified_gmt":"2026-08-11T12:12:20","slug":"el-acceso-a-los-medicamentos-en-el-contexto-de-las-enfermedades-raras-por-el-prof-dr-g-m-b-sandy-tubeuf-y-romain-alderweireldt","status":"publish","type":"post","link":"https:\/\/f101g.org\/es\/el-acceso-a-los-medicamentos-en-el-contexto-de-las-enfermedades-raras-por-el-prof-dr-g-m-b-sandy-tubeuf-y-romain-alderweireldt\/","title":{"rendered":"\u00abEl acceso a los medicamentos en el contexto de las enfermedades raras\u00bb, por el Prof. Dr. G. M. B. Sandy Tubeuf y Romain Alderweireldt"},"content":{"rendered":"<p style=\"text-align: justify;\"><a href=\"#_ftn1\" name=\"_ftnref1\"><\/a><\/p>\n<p><em>Este art\u00edculo apareci\u00f3 en <a href=\"https:\/\/www.luss.be\/wp-content\/uploads\/2020\/10\/luss-chainon-52-def.pdf\" target=\"_blank\" rel=\"noopener\">\u00abLe Cha\u00eenon &#8211; la revue des associations de patients et de proches\u00bb, N\u00b052 en septiembre de 2020<\/a>.<\/em><\/p>\n<p style=\"text-align: justify;\">Las investigaciones realizadas por la profesora Sandy Tubeuf y la doctora Setti Rais (Louvain Institute of Data Analysis and Modeling in Economics and Statistics) sobre los retos econ\u00f3micos en el contexto de las enfermedades raras demuestran que, si bien la regulaci\u00f3n en materia de medicamentos hu\u00e9rfanos ha propiciado un aumento del n\u00famero de ensayos cl\u00ednicos y de publicaciones cient\u00edficas sobre las enfermedades raras, este incremento ha tenido, no obstante, al menos dos efectos perversos:<\/p>\n<ul style=\"text-align: justify;\">\n<li>La inversi\u00f3n en investigaci\u00f3n y desarrollo beneficia principalmente a las enfermedades raras que aparecen en la edad adulta, y las enfermedades raras que afectan a la primera infancia son las que menos inversi\u00f3n reciben, a pesar de que una de cada dos enfermedades raras afecta a ni\u00f1os peque\u00f1os&nbsp;;<\/li>\n<li>Aunque hay m\u00e1s medicamentos hu\u00e9rfanos en el mercado, los elevad\u00edsimos precios que cobran las empresas farmac\u00e9uticas son un obst\u00e1culo para el acceso efectivo a estos medicamentos.<\/li>\n<\/ul>\n<p style=\"text-align: justify;\">Para superar estas dificultades, estos autores recomiendan, en primer lugar, <strong>que se fomente realmente la investigaci\u00f3n mediante la creaci\u00f3n y puesta en com\u00fan de bases de datos que permitan avanzar realmente en el conocimiento de las enfermedades raras<\/strong>.<\/p>\n<p style=\"text-align: justify;\">En segundo lugar, los autores insisten <strong>en la necesidad de aumentar la coordinaci\u00f3n y, por tanto, el poder de negociaci\u00f3n de los responsables pol\u00edticos frente a los fabricantes, con el fin de equilibrar el reparto de los riesgos de desarrollo de los medicamentos y negociar mejor sus precios<\/strong>.<\/p>\n<p style=\"text-align: justify;\">En tercer y \u00faltimo lugar, para reducir el af\u00e1n de lucro de los industriales, los investigadores abogan por precios m\u00e1s justos, fruto de una mayor transparencia de los costes de investigaci\u00f3n y desarrollo y de la consideraci\u00f3n del bien com\u00fan de la sociedad.<\/p>\n<p style=\"text-align: justify;\"><strong>Profesor Sandy Tubeuf, Econom\u00eda de la Salud, UCL y Romain ALDERWEIRELDT, Fundaci\u00f3n&nbsp;101&nbsp;Genomas<\/strong><\/p>\n<p style=\"text-align: justify;\"><strong><em>Para m\u00e1s informaci\u00f3n&nbsp;:  <\/em><\/strong><\/p>\n<p style=\"text-align: justify;\"><a href=\"https:\/\/www.regardseconomiques.be\/index.php\/index.php?option=com_reco&#038;view=article&#038;cid=198\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/www.regardseconomiques.be\/index.php\/index.php?option=com_reco&#038;view=article&#038;cid=198.<\/a><\/p>\n<p style=\"text-align: justify;\">&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Este art\u00edculo apareci\u00f3 en \u00abLe Cha\u00eenon &#8211; la revue des associations de patients et de proches\u00bb, N\u00b052 en septiembre de &hellip;<\/p>\n","protected":false},"author":3,"featured_media":3263,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_feature_clip_id":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2},"jetpack_post_was_ever_published":false},"categories":[185],"tags":[],"class_list":["post-4115","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-enfermedades-raras"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>&quot;El acceso a los medicamentos en el contexto de las enfermedades raras&quot;, por el Prof. Dr. G. 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