{"id":45831,"date":"2025-10-21T07:21:41","date_gmt":"2025-10-21T11:21:41","guid":{"rendered":"https:\/\/rett.ca\/la-coalition-canadienne-du-syndrome-de-rett-et-cord-exhortent-a-un-reexamen-la-cda-doit-reconsiderer-sa-position-apres-avoir-refuse-lacces\/"},"modified":"2025-10-21T10:16:47","modified_gmt":"2025-10-21T14:16:47","slug":"la-coalition-canadienne-du-syndrome-de-rett-et-cord-exhortent-a-un-reexamen-la-cda-doit-reconsiderer-sa-position-apres-avoir-refuse-lacces","status":"publish","type":"post","link":"https:\/\/rett.ca\/fr\/la-coalition-canadienne-du-syndrome-de-rett-et-cord-exhortent-a-un-reexamen-la-cda-doit-reconsiderer-sa-position-apres-avoir-refuse-lacces\/","title":{"rendered":"LA COALITION CANADIENNE DU SYNDROME DE RETT ET CORD DEMANDENT UN R\u00c9EXAMEN APR\u00c8S LE REFUS DE LA CDA D&#8217;ACCORDER L&#8217;ACC\u00c8S \u00c0 DAYBUE."},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-post\" data-elementor-id=\"45831\" class=\"elementor elementor-45831 elementor-45826\" data-elementor-settings=\"{&quot;ha_cmc_init_switcher&quot;:&quot;no&quot;}\" data-elementor-post-type=\"post\">\n\t\t\t\t<div class=\"elementor-element elementor-element-605504b e-flex e-con-boxed e-con e-parent\" data-id=\"605504b\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;_ha_eqh_enable&quot;:false}\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-865a7fd elementor-widget elementor-widget-heading\" data-id=\"865a7fd\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">La Coalition canadienne du syndrome de Rett et CORD exhortent \u00e0 un r\u00e9examen apr\u00e8s que la CDA a refus\u00e9 l'acc\u00e8s \u00e0 Daybue.<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-845d337 elementor-widget elementor-widget-text-editor\" data-id=\"845d337\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p> <\/p><p><strong>Les familles touch\u00e9es par le syndrome de Rett sont indign\u00e9es par le refus de l&#8217;agence canadienne des m\u00e9dicaments concernant DAYBUE<\/strong><strong><sup>\u00ae<\/sup><\/strong> <strong>(trofinetide)<\/strong><\/p><p><strong><em>La Coalition canadienne du syndrome de Rett exige un r\u00e9examen justifi\u00e9 dans le cadre du programme d&#8217;acc\u00e8s limit\u00e9 dans le temps<\/em><\/strong><\/p><p><strong>TORONTO, ON \u2013 21 octobre 2025 \u2013<\/strong> La Coalition canadienne du syndrome de Rett &#8211; comprenant la Soci\u00e9t\u00e9 du syndrome de Rett de la Colombie-Britannique (RSSBC), la Soci\u00e9t\u00e9 du syndrome de Rett de l&#8217;Alberta (RSSA), l&#8217;Association du syndrome de Rett de la Saskatchewan (SRSA), l&#8217;Association du syndrome de Rett du Manitoba (MRSA), l&#8217;Association du syndrome de Rett de l&#8217;Ontario du Canada (ORSA Canada), et l&#8217;Association qu\u00e9b\u00e9coise du syndrome de Rett (ASQR) &#8211; ainsi que la communaut\u00e9 canadienne \u00e9largie du syndrome de Rett et avec le soutien de l&#8217;Organisation canadienne des maladies rares (CORD) ont exprim\u00e9 leur profonde indignation et leur incr\u00e9dulit\u00e9 face \u00e0 la d\u00e9cision de l&#8217;Agence canadienne des m\u00e9dicaments (CDA, anciennement CADTH) de ne pas rembourser DAYBUE<sup>\u00ae<\/sup>  (trofinetide) &#8211; le premier et unique traitement approuv\u00e9 pour le syndrome de Rett.<\/p><p>Le syndrome de Rett est une maladie neurologique g\u00e9n\u00e9tique rare et d\u00e9vastatrice qui touche presque exclusivement les filles ; encore plus rare chez les gar\u00e7ons, entra\u00eenant la perte de la parole, de la mobilit\u00e9 et de l&#8217;autonomie, et n\u00e9cessitant des soins permanents 24 heures sur 24.<a href=\"#_edn1\" name=\"_ednref1\">[i]<\/a><sup>, <a href=\"#_edn2\" name=\"_ednref2\">[ii]<\/a><\/sup> Entre 600 et 900 familles canadiennes vivent avec cette maladie.<a href=\"#_edn3\" name=\"_ednref3\">[iii]<\/a> Sant\u00e9 Canada a approuv\u00e9 DAYBUE en octobre 2024 dans le cadre d&#8217;un examen prioritaire, citant des am\u00e9liorations statistiquement significatives de la communication, de la fonction motrice et de la qualit\u00e9 de vie.<a href=\"#_edn4\" name=\"_ednref4\">[iv]<\/a><\/p><p>Pourtant, en ao\u00fbt 2025, la recommandation finale de la CDA a rejet\u00e9 la couverture publique, ignorant la conclusion scientifique du r\u00e9gulateur selon laquelle DAYBUE offre un avantage clinique significatif &#8211; une d\u00e9cision qui prive des centaines d&#8217;enfants et d&#8217;adultes canadiens de l&#8217;acc\u00e8s au seul traitement disponible et de tout espoir d&#8217;am\u00e9lioration.<\/p><p>\u00ab Cette d\u00e9cision est d\u00e9vastatrice et ind\u00e9fendable \u00bb, a d\u00e9clar\u00e9 Durhane Wong-Rieger, pr\u00e9sidente et directrice g\u00e9n\u00e9rale de CORD. \u00ab Avant la voie officielle de remboursement limit\u00e9 dans le temps, la CDA recommandait un remboursement conditionnel ou des plans d&#8217;acc\u00e8s g\u00e9r\u00e9 pour les m\u00e9dicaments dont les donn\u00e9es \u00e9taient incertaines, comme l&#8217;amyotrophie spinale (SMA), la c\u00e9cit\u00e9 r\u00e9tinienne et l&#8217;ataxie de Friedreich. Dans son examen, l&#8217;Agence a accept\u00e9 que le syndrome de Rett r\u00e9ponde aux m\u00eames crit\u00e8res, mais a inexplicablement refus\u00e9 d&#8217;appliquer la m\u00eame politique que celle appliqu\u00e9e dans des situations similaires. \u00bb <\/p><p><strong>Soumission d&#8217;une lettre et d&#8217;une proposition de r\u00e9examen<\/strong><\/p><p>CORD et la Coalition canadienne du syndrome de Rett ont officiellement soumis une lettre \u00e0 la CDA demandant un r\u00e9examen sans pr\u00e9c\u00e9dent, mais pleinement justifi\u00e9, de la recommandation de remboursement de DAYBUE, accompagn\u00e9e d&#8217;une proposition d&#8217;acc\u00e8s g\u00e9r\u00e9 limit\u00e9 dans le temps (TLMA) &#8211; un cadre d\u00e9taill\u00e9 montrant comment d&#8217;autres m\u00e9dicaments contre les maladies rares dont les donn\u00e9es sont incertaines ont re\u00e7u un financement conditionnel.<\/p><p>La proposition TLMA cite des pr\u00e9c\u00e9dents o\u00f9 la CDA a recommand\u00e9 de \u00ab rembourser avec conditions \u00bb pour les maladies rares, notamment :<\/p><ul><li>Zolgensma (SMA) \u2013 rembours\u00e9 avec des r\u00e8gles strictes d&#8217;admissibilit\u00e9 et de suivi ;<\/li><li>Brineura (maladie de Batten CLN2) \u2013 couverture malgr\u00e9 des preuves \u00e0 bras unique ;<\/li><li>Luxturna (dystrophie r\u00e9tinienne RPE65) \u2013 a accept\u00e9 une \u00e9chelle fonctionnelle sp\u00e9cifique \u00e0 la maladie ; et<\/li><li>Epidiolex (crises de TSC) \u2013 approuv\u00e9 avec des r\u00e9sultats rapport\u00e9s par les soignants au centre des d\u00e9lib\u00e9rations.<\/li><\/ul><p>Chaque cas est similaire \u00e0 DAYBUE : essais courts, petits \u00e9chantillons, crit\u00e8res d&#8217;\u00e9valuation non traditionnels \u2014 mais des <em>am\u00e9liorations cliniquement significatives<\/em> dans des maladies d\u00e9vastatrices et incurables.<\/p><p><strong>Les propres conclusions de la CDA justifient un acc\u00e8s conditionnel<\/strong><\/p><p>Dans sa recommandation, la CDA a reconnu que :<\/p><ul><li>Le syndrome de Rett r\u00e9pond aux crit\u00e8res de \u00ab besoin important non satisfait \u00bb permettant une incertitude quant aux preuves ;<\/li><li>DAYBUE a produit des am\u00e9liorations statistiquement significatives des principaux r\u00e9sultats du syndrome de Rett (RSBQ et CGI-I) ;<\/li><li>Les effets secondaires \u00e9taient g\u00e9rables ; et<\/li><li>La collecte de donn\u00e9es apr\u00e8s la commercialisation est essentielle pour r\u00e9soudre l&#8217;incertitude r\u00e9siduelle.<\/li><\/ul><p>La lettre des patients exhorte la CDA \u00e0 convertir sa recommandation n\u00e9gative en une inscription d&#8217;acc\u00e8s g\u00e9r\u00e9 limit\u00e9 dans le temps de deux ans, exigeant :<\/p><ul><li>prescription par un sp\u00e9cialiste et admissibilit\u00e9 stricte (refl\u00e9tant l&#8217;essai pivot) ;<\/li><li>Donn\u00e9es sur la QVLS et la fonction \u00e0 des intervalles de 6, 12 et 24 mois ;<\/li><li>r\u00e8gles de continuation\/arr\u00eat ; et<\/li><li>ententes de prix ax\u00e9es sur les r\u00e9sultats.<\/li><\/ul><p><strong>Appel \u00e0 l&#8217;action<\/strong><\/p><p>La Coalition canadienne du syndrome de Rett appelle la CDA et tous les r\u00e9gimes provinciaux\/territoriaux d&#8217;assurance m\u00e9dicaments \u00e0 respecter les engagements du Canada envers les patients atteints de maladies rares et l&#8217;\u00e9quit\u00e9 en mati\u00e8re d&#8217;acc\u00e8s :<\/p><p>\u00ab Nous n&#8217;accepterons pas l&#8217;indiff\u00e9rence bureaucratique lorsque des personnes atteintes du syndrome de Rett se voient refuser le seul traitement dont l&#8217;efficacit\u00e9 a \u00e9t\u00e9 prouv\u00e9e pour am\u00e9liorer leur vie \u00bb, a d\u00e9clar\u00e9 Wong-Rieger. \u00ab Une inscription d&#8217;acc\u00e8s g\u00e9r\u00e9 limit\u00e9 dans le temps est la solution \u00e9quilibr\u00e9e, fond\u00e9e sur des preuves et humaine que les propres politiques de la CDA permettent. Nous exhortons la CDA \u00e0 faire ce qui est juste &#8211; reconsid\u00e9rer et rouvrir l&#8217;acc\u00e8s maintenant. \u00bb <\/p><p><strong>Personnes-ressources pour les m\u00e9dias :<\/strong><\/p><p><em>Pour la Coalition canadienne du syndrome de Rett : <\/em><\/p><p>Sabrina Millson, B.Ed, CCRP, CCRA<\/p><p>Pr\u00e9sidente, Association du syndrome de Rett de l&#8217;Ontario du Canada<\/p><p>Courriel : <a href=\"mailto:smillson@rett.ca\">smillson@rett.ca<\/a> <\/p><p>T\u00e9l\u00e9phone : +1 519-474-6877<\/p><p><a href=\"https:\/\/urldefense.com\/v3\/__http:\/www.rett.ca__;!!IfJP2Nwhk5Z0yJ43lA!NWUPdAFsO2qA5YMvlFt4wAsGA7PIX7GonpOZ9snn2kRac2vvSF_zf6jsZ81HpZ5zW_eD5aMpmL_bDx20tCtPdcRUVg%24\">www.rett.ca<\/a><\/p><p><em>Pour CORD : <\/em><\/p><p>Durhane Wong-Rieger, PhD<br>Pr\u00e9sidente et directrice g\u00e9n\u00e9rale, Organisation canadienne des maladies rares (CORD)<br>Courriel : <a href=\"mailto:durhane@raredisorders.ca\">durhane@raredisorders.ca<\/a><\/p><p>T\u00e9l\u00e9phone : +1 (416) 969-7464<br><a href=\"http:\/\/www.raredisorders.ca\/\">www.raredisorders.ca<\/a><\/p><p>R\u00e9f\u00e9rences :<\/p><p><a href=\"#_ednref1\" name=\"_edn1\">[i]<\/a> Fu et al. Lignes directrices consensuelles sur la prise en charge du syndrome de Rett tout au long de la vie. <em>BMJ Paediatrics Open<\/em>. 2020;4:1-14  <\/p><p><a href=\"#_ednref2\" name=\"_edn2\">[ii]<\/a> Kyle SM, Vashi N, Justice MJ. Syndrome de Rett : une maladie neurologique avec des composantes m\u00e9taboliques. <g id=\"gid_1\">Open Biol<\/g>. 2018; 8:170216.  <\/p><p><a href=\"#_ednref3\" name=\"_edn3\">[iii]<\/a> Acadia Pharmaceuticals Inc. Donn\u00e9es au dossier. Pr\u00e9valence du syndrome de Rett au Canada. Septembre 2024.    <\/p><p><a href=\"#_ednref4\" name=\"_edn4\">[iv]<\/a> Sant\u00e9 Canada. Monographie du produit DAYBUE. 11 octobre 2024.  <\/p><p> <\/p><p>NEWSWIRE.CA<\/p><p><a href=\"https:\/\/www.newswire.ca\/news-releases\/rett-syndrome-families-outraged-by-canada-s-drug-agency-denial-of-daybue-r-trofinetide--851025958.html\">Les familles touch\u00e9es par le syndrome de Rett sont indign\u00e9es par le refus de DAYBUE\u00ae (trofinetide) par l&#8217;Agence des m\u00e9dicaments du Canada<\/a><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>La Coalition canadienne du syndrome de Rett et CORD exhortent \u00e0 un r\u00e9examen apr\u00e8s que la CDA a refus\u00e9 l&#8217;acc\u00e8s \u00e0 Daybue. Les familles touch\u00e9es par le syndrome de Rett sont indign\u00e9es par le refus de l&#8217;agence canadienne des m\u00e9dicaments concernant DAYBUE\u00ae (trofinetide) La Coalition canadienne du syndrome de Rett exige un r\u00e9examen justifi\u00e9 dans [&hellip;]<\/p>\n","protected":false},"author":5,"featured_media":45832,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_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_post_was_ever_published":false},"categories":[152],"tags":[],"class_list":["post-45831","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-non-categorise"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>LA COALITION CANADIENNE DU SYNDROME DE RETT ET CORD DEMANDENT UN R\u00c9EXAMEN APR\u00c8S LE REFUS DE LA CDA D&#039;ACCORDER L&#039;ACC\u00c8S \u00c0 DAYBUE. - Ontario Rett Syndrome Association<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/rett.ca\/fr\/la-coalition-canadienne-du-syndrome-de-rett-et-cord-exhortent-a-un-reexamen-la-cda-doit-reconsiderer-sa-position-apres-avoir-refuse-lacces\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LA COALITION CANADIENNE DU SYNDROME DE RETT ET CORD DEMANDENT UN R\u00c9EXAMEN APR\u00c8S LE REFUS DE LA CDA D&#039;ACCORDER L&#039;ACC\u00c8S \u00c0 DAYBUE. - Ontario Rett Syndrome Association\" \/>\n<meta property=\"og:description\" content=\"La Coalition canadienne du syndrome de Rett et CORD exhortent \u00e0 un r\u00e9examen apr\u00e8s que la CDA a refus\u00e9 l&#8217;acc\u00e8s \u00e0 Daybue. 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