{"id":4136,"date":"2021-01-02T20:56:10","date_gmt":"2021-01-02T19:56:10","guid":{"rendered":"https:\/\/f101g.org\/access-to-medicines-in-the-context-of-rare-diseases-by-prof-dr-g-g-sandy-tubeuf-and-romain-alderweireldt\/"},"modified":"2021-01-02T20:56:10","modified_gmt":"2021-01-02T19:56:10","slug":"access-to-medicines-in-the-context-of-rare-diseases-by-prof-dr-g-g-sandy-tubeuf-and-romain-alderweireldt","status":"publish","type":"post","link":"https:\/\/f101g.org\/en\/access-to-medicines-in-the-context-of-rare-diseases-by-prof-dr-g-g-sandy-tubeuf-and-romain-alderweireldt\/","title":{"rendered":"\u201cAccess to medicines in the context of rare diseases\u201d by Prof. Dr. G. G. Sandy Tubeuf and Romain Alderweireldt"},"content":{"rendered":"<p style=\"text-align: justify;\"><a href=\"#_ftn1\" name=\"_ftnref1\"><\/a><\/p>\n<p><em>This article appeared in <a href=\"https:\/\/www.luss.be\/wp-content\/uploads\/2020\/10\/luss-chainon-52-def.pdf\" target=\"_blank\" rel=\"noopener\">&#8220;Le Cha\u00eenon &#8211; la revue des associations de patients et de proches&#8221;, N\u00b052 in September 2020<\/a>.<\/em><\/p>\n<p style=\"text-align: justify;\">Research carried out by Professor Sandy Tubeuf and Dr Setti Rais (Louvain Institute of Data Analysis and Modeling in Economics and Statistics) on economic issues in the context of rare diseases shows that, while orphan drug regulation has indeed led to an increase in the number of clinical trials and scientific publications concerning rare diseases, this increase has had at least two perverse effects&nbsp;:<\/p>\n<ul style=\"text-align: justify;\">\n<li>Investment in research and development mainly benefits rare diseases that occur in adulthood, and rare diseases that affect early childhood receive the least investment, despite the fact that one in two rare diseases affects infants&nbsp;;<\/li>\n<li>Even though there are more orphan drugs on the market, the very high prices charged by pharmaceutical companies are an obstacle to effective access to these drugs.<\/li>\n<\/ul>\n<p style=\"text-align: justify;\">To alleviate these difficulties, these authors recommend, firstly, that <strong>research be genuinely promoted by establishing and pooling databases that will enable real progress to be made in our knowledge of rare diseases<\/strong>.<\/p>\n<p style=\"text-align: justify;\">Secondly, the authors insist on <strong>the need to increase coordination and thus the bargaining power of political decision-makers in relation to manufacturers, in order to balance the sharing of drug development risks and better negotiate drug prices<\/strong>.<\/p>\n<p style=\"text-align: justify;\">Thirdly and lastly, to mitigate the profit motive of industrialists, the researchers advocate fairer pricing based on greater transparency of research and development costs and consideration of the common good of society.<\/p>\n<p style=\"text-align: justify;\"><strong>Professor Sandy Tubeuf, Health Economics, UCL and Romain ALDERWEIRELDT, Foundation&nbsp;101&nbsp;Genomes<\/strong><\/p>\n<p style=\"text-align: justify;\"><strong><em>For more information&nbsp;:  <\/em><\/strong><\/p>\n<p style=\"text-align: justify;\"><a href=\"https:\/\/www.regardseconomiques.be\/index.php\/index.php?option=com_reco&amp;view=article&amp;cid=198\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/www.regardseconomiques.be\/index.php\/index.php?option=com_reco&amp;view=article&amp;cid=198.<\/a><\/p>\n<p style=\"text-align: justify;\">&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>This article appeared in &#8220;Le Cha\u00eenon &#8211; la revue des associations de patients et de proches&#8221;, N\u00b052 in September 2020. &hellip;<\/p>\n","protected":false},"author":3,"featured_media":3260,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_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}},"categories":[],"tags":[],"class_list":["post-4136","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.9 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>&quot;Access to medicines in the context of rare diseases&quot; by Prof. Dr. G. 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