{"id":45290,"date":"2025-08-22T12:55:20","date_gmt":"2025-08-22T16:55:20","guid":{"rendered":"https:\/\/rett.ca\/communique-de-presse-daybue-approuve-par-sante-canada-mais-non-rembourse-au-canada\/"},"modified":"2025-10-05T09:55:38","modified_gmt":"2025-10-05T13:55:38","slug":"communique-de-presse-daybue-approuve-par-sante-canada-mais-non-rembourse-au-canada","status":"publish","type":"post","link":"https:\/\/rett.ca\/fr\/communique-de-presse-daybue-approuve-par-sante-canada-mais-non-rembourse-au-canada\/","title":{"rendered":"Communiqu\u00e9 de presse : Daybue approuv\u00e9 par Sant\u00e9 Canada mais non rembours\u00e9 au Canada"},"content":{"rendered":"\t\t
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Communiqu\u00e9 de presse : Daybue approuv\u00e9 par Sant\u00e9 Canada mais non rembours\u00e9 au Canada<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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POUR DIFFUSION IMM\u00c9DIATE<\/p>\n\n\n\n

L’Association du syndrome de Rett de l’Ontario r\u00e9agit \u00e0 la recommandation de l’Agence canadienne des m\u00e9dicaments concernant Daybue\u2122<\/p>\n\n\n\n

London, Ontario \u2013 22 ao\u00fbt 2025<\/em> \u2013 L’Association du syndrome de Rett de l’Ontario du Canada (ORSA Canada) est profond\u00e9ment d\u00e9\u00e7ue de la recommandation formul\u00e9e aujourd’hui par l’Agence canadienne des m\u00e9dicaments (ACM-CDA) de ne pas rembourser Daybue\u2122 (trofinetide) pour les personnes atteintes du syndrome de Rett dans le cadre du r\u00e9gime public d’assurance-m\u00e9dicaments.<\/p>\n\n\n\n

Cette d\u00e9cision intervient malgr\u00e9 l’approbation ant\u00e9rieure de Daybue\u2122 par Sant\u00e9 Canada et le nombre croissant de preuves issues des \u00e9tudes LAVENDER et de prolongation qui ont montr\u00e9 des am\u00e9liorations significatives en mati\u00e8re de communication, de comportement et de qualit\u00e9 de vie globale.<\/p>\n\n\n\n

\u00ab Les familles nous disent chaque jour que ces progr\u00e8s signifient tout. Pour les personnes vivant avec le syndrome de Rett, m\u00eame de petites am\u00e9liorations peuvent changer la vie quotidienne de mani\u00e8re profonde \u00bb, a d\u00e9clar\u00e9 Sabrina Millson, pr\u00e9sidente d’ORSA Canada. \u00ab La recommandation de l’ACM est d\u00e9chirante pour notre communaut\u00e9 et laisse bient\u00f4t les familles sans acc\u00e8s \u00e9quitable au seul traitement approuv\u00e9 pour le syndrome de Rett. \u00bb <\/p>\n\n\n\n

Le syndrome de Rett est un trouble neurologique rare et complexe qui affecte presque tous les aspects de la vie quotidienne, n\u00e9cessitant des soins 24 heures sur 24 et 7 jours sur 7. Sans remboursement public, les familles sont confront\u00e9es au d\u00e9fi impossible de se permettre un traitement qui pourrait apporter des avantages qui changent la vie. <\/p>\n\n\n\n

ORSA Canada continuera \u00e0 plaider pour l’acc\u00e8s \u00e0 Daybue\u2122 avec une nouvelle soumission, tout en travaillant en \u00e9troite collaboration avec les d\u00e9cideurs politiques, les cliniciens, les associations et les familles pour s’assurer que les voix des personnes vivant avec le syndrome de Rett soient entendues.<\/p>\n\n\n\n

Consultez le rapport complet de l’ACM ici : Trofinetide (Daybue)<\/a><\/p>\n\n\n\n

FAQ sur Daybue\u2122 au Canada<\/strong> – ce que les familles doivent savoir<\/strong><\/p>\n\n\n\n

Q :<\/strong> Quelle est la diff\u00e9rence entre Sant\u00e9 Canada et l’Agence canadienne des m\u00e9dicaments (ACM) ?<\/p>\n\n\n\n

R :<\/strong> Sant\u00e9 Canada s’assure que les nouveaux m\u00e9dicaments sont s\u00fbrs et fonctionnent comme pr\u00e9vu. Lorsque Sant\u00e9 Canada approuve un m\u00e9dicament, cela signifie que les m\u00e9decins au Canada sont l\u00e9galement autoris\u00e9s \u00e0 le prescrire. <\/p>\n\n\n\n

L’Agence canadienne des m\u00e9dicaments examine le co\u00fbt et la valeur. Elle d\u00e9cide si les r\u00e9gimes publics d’assurance-m\u00e9dicaments (comme la couverture provinciale) doivent payer le m\u00e9dicament. <\/p>\n\n\n\n

Ainsi, Sant\u00e9 Canada peut dire OUI parce que le m\u00e9dicament est prouv\u00e9 s\u00fbr et efficace, tandis que l’ACM peut dire NON si elle estime que le co\u00fbt est trop \u00e9lev\u00e9 par rapport \u00e0 sa mesure des avantages.<\/p>\n\n\n\n

Q :<\/strong> Qu’est-ce que Daybue ?<\/p>\n\n\n\n

R :<\/strong> Daybue\u2122 (trofinetide) est le tout premier traitement approuv\u00e9 au Canada sp\u00e9cifiquement pour le syndrome de Rett.<\/p>\n\n\n\n

Q :<\/strong> Qui l’a approuv\u00e9 ?<\/p>\n\n\n\n

R :<\/strong> Sant\u00e9 Canada a examin\u00e9 les donn\u00e9es scientifiques et a d\u00e9clar\u00e9 que Daybue est s\u00fbr et fonctionne comme pr\u00e9vu.<\/p>\n\n\n\n

Q :<\/strong> Pourquoi est-il difficile d’y acc\u00e9der ?<\/p>\n\n\n\n

R :<\/strong> Parce qu’apr\u00e8s l’approbation de Sant\u00e9 Canada, l’ACM d\u00e9cide si les r\u00e9gimes publics d’assurance-m\u00e9dicaments doivent couvrir le co\u00fbt. Le 22 ao\u00fbt 2025, l’ACM a donn\u00e9 sa recommandation finale, d\u00e9cidant de ne pas rembourser Daybue. <\/p>\n\n\n\n

Q :<\/strong> Qu’est-ce que cela signifie actuellement ?<\/p>\n\n\n\n

R :<\/strong> Les familles sans assurance priv\u00e9e devront payer de leur poche, ce qui rend Daybue inaccessible pour la plupart. Les familles avec une assurance priv\u00e9e peuvent \u00eatre en mesure de demander une couverture. <\/p>\n\n\n\n

Q : <\/strong>La d\u00e9cision de l’ACM peut-elle changer ?<\/p>\n\n\n\n

R :<\/strong> Oui. Il existe un processus d’appel (r\u00e9examen). Les groupes de d\u00e9fense des droits, les m\u00e9decins et l’entreprise pharmaceutique peuvent soumettre de nouvelles preuves et perspectives familiales. <\/p>\n\n\n\n

Q :<\/strong> Qui prend la d\u00e9cision finale ?<\/p>\n\n\n\n

R :<\/strong> Chaque province\/territoire d\u00e9cide s’il financera Daybue, mais ils suivent g\u00e9n\u00e9ralement la recommandation de l’ACM.<\/p>\n\n\n\n

Q :<\/strong> Combien de temps cela pourrait-il prendre ?<\/p>\n\n\n\n

R : <\/strong>Ces processus peuvent prendre des mois, parfois plus longtemps. C’est pourquoi le plaidoyer est si important pour acc\u00e9l\u00e9rer les choses. <\/p>\n\n\n\n

Q :<\/strong> Daybue a-t-il \u00e9t\u00e9 approuv\u00e9 ailleurs ?<\/p>\n\n\n\n

R :<\/strong> Oui. Il est d\u00e9j\u00e0 approuv\u00e9 aux \u00c9tats-Unis. <\/p>\n\n\n\n

Q :<\/strong> Que peuvent faire les familles ?<\/p>\n\n\n\n

R :<\/strong> Partagez votre histoire, soutenez les efforts de plaidoyer et aidez \u00e0 sensibiliser.<\/p>\n\n\n\n

R\u00e9f\u00e9rences :<\/p>\n\n\n\n

https:\/\/www.canada.ca\/en\/health-canada.html<\/a><\/p>\n\n\n\n

https:\/\/www.cda-amc.ca\/sites\/default\/files\/DRR\/2025\/SR0829-Daybue_FINAL_Recommendation.pdf<\/a><\/p>\n\n\n\n

https:\/\/acadia.com\/en-ca\/media\/news-releases\/acadia-pharmaceuticals-announces-health-canada-approval-daybuetm<\/a><\/p>\n\n\n\n

<\/p>\n\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":"

Communiqu\u00e9 de presse : Daybue approuv\u00e9 par Sant\u00e9 Canada mais non rembours\u00e9 au Canada POUR DIFFUSION IMM\u00c9DIATE L’Association du syndrome de Rett de l’Ontario r\u00e9agit \u00e0 la recommandation de l’Agence canadienne des m\u00e9dicaments concernant Daybue\u2122 London, Ontario \u2013 22 ao\u00fbt 2025 \u2013 L’Association du syndrome de Rett de l’Ontario du Canada (ORSA Canada) est profond\u00e9ment […]<\/p>\n","protected":false},"author":1,"featured_media":45291,"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-45290","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-non-categorise"],"yoast_head":"\nCommuniqu\u00e9 de presse : Daybue approuv\u00e9 par Sant\u00e9 Canada mais non rembours\u00e9 au Canada - 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