{"id":138588,"date":"2025-03-26T10:18:03","date_gmt":"2025-03-26T14:18:03","guid":{"rendered":"https:\/\/wfh.org\/article\/communique-de-la-fmh-sur-les-evolutions-recentes-liees-aux-therapies-de-lhemophilie\/"},"modified":"2025-04-02T10:40:52","modified_gmt":"2025-04-02T14:40:52","slug":"communique-de-la-fmh-sur-les-evolutions-recentes-liees-aux-therapies-de-lhemophilie","status":"publish","type":"post","link":"https:\/\/wfh.org\/fr\/article\/communique-de-la-fmh-sur-les-evolutions-recentes-liees-aux-therapies-de-lhemophilie\/","title":{"rendered":"Communiqu\u00e9 de la FMH sur les \u00e9volutions r\u00e9centes li\u00e9es aux th\u00e9rapies de l\u2019h\u00e9mophilie"},"content":{"rendered":"\t\t
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La F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie (FMH) s\u2019inqui\u00e8te de la tendance r\u00e9cente \u00e0 cesser le d\u00e9veloppement ou la commercialisation de plusieurs th\u00e9rapies de l\u2019h\u00e9mophilie. Depuis octobre 2024, nous avons constat\u00e9 les reculs suivants\u00a0:<\/p>\n

    \n
  • Pfizer<\/strong> a abandonn\u00e9 la commercialisation mondiale du fidanacogene elaparvovec-dzkt<\/em>, une th\u00e9rapie g\u00e9nique pour l\u2019h\u00e9mophilie B\u00a0;<\/li>\n
  • Pfizer<\/strong> a mis fin \u00e0 sa collaboration et r\u00e9sili\u00e9 son accord de licence avec Sangamo Therapeutics<\/strong> pour le giroctocog\u00e8ne fitelparvovec<\/em>, une th\u00e9rapie g\u00e9nique exp\u00e9rimentale pour l\u2019h\u00e9mophilie A\u00a0;<\/li>\n
  • Spark Therapeutics<\/strong> a interrompu la phase 3 de son essai du dirloctocog\u00e8ne samoparvovec<\/em>, une th\u00e9rapie g\u00e9nique exp\u00e9rimentale pour l\u2019h\u00e9mophilie A visant au d\u00e9veloppement d\u2019un variant du FVIII\u00a0;<\/li>\n
  • Centessa Pharmaceuticals<\/strong> a cess\u00e9 le d\u00e9veloppement mondial du SerpinPC<\/em>, un inhibiteur de prot\u00e9ase \u00e0 serine pour l\u2019h\u00e9mophilie B.<\/li>\n<\/ul>\n

    Ces d\u00e9cisions, bas\u00e9es \u00e0 la fois sur la science et sur le potentiel commercial d\u00e9termin\u00e9 par les compagnies pharmaceutiques, retardent les progr\u00e8s et r\u00e9duisent le nombre d\u2019options de traitement pour les personnes atteintes d\u2019h\u00e9mophilie. Si la FMH admet que l\u2019efficacit\u00e9, la s\u00e9curit\u00e9 et des normes commerciales et r\u00e9glementaires pr\u00e9sident \u00e0 ces choix, l\u2019abandon d\u2019un produit ne doit en aucun cas \u00eatre interpr\u00e9t\u00e9 comme r\u00e9sultant d\u2019un manque d\u2019investissement des chercheurs et chercheuses, des professionnel\u00b7les de sant\u00e9 ou de la communaut\u00e9 des patient\u00b7es en g\u00e9n\u00e9ral. En effet, tous les traitements potentiels sont bienvenus, s\u2019ils sont s\u00fbrs et efficaces\u00a0; ils constituent une \u00e9tape de plus vers notre vision du Traitement pour tous. Par cons\u00e9quent, nous exhortons les compagnies pharmaceutiques, les investisseurs, les autorit\u00e9s de sant\u00e9 et les diverses parties prenantes\u00a0\u00e0\u00a0:<\/p>\n

      \n
    1. maintenir leur engagement<\/strong> en faveur de l\u2019am\u00e9lioration des options de traitement pour l\u2019h\u00e9mophilie et des autres troubles de la coagulation\u00a0;<\/li>\n
    2. continuer \u00e0 investir<\/strong> dans la recherche et le d\u00e9veloppement afin de pr\u00e9venir les interruptions des progr\u00e8s scientifiques en faveur des th\u00e9rapies curatives\u00a0;<\/li>\n
    3. pr\u00e9server et partager les donn\u00e9es des essais cliniques<\/strong> des traitements abandonn\u00e9s, afin de ne pas perdre de pr\u00e9cieuses perspectives ni les contributions des patient\u00b7es, par exemple par le biais d\u2019une plateforme telle que le Registre de la th\u00e9rapie g\u00e9nique de la FMH\u00a0;<\/li>\n
    4. faire preuve de plus de cr\u00e9ativit\u00e9<\/strong> afin d\u2019identifier des mani\u00e8res mutuellement avantageuses de fournir des th\u00e9rapies \u00e0 la plus grande partie du monde.<\/li>\n<\/ol>\n

      L\u2019industrie pharmaceutique et la communaut\u00e9 des investisseurs doivent prendre conscience de leur r\u00f4le dans la poursuite du progr\u00e8s scientifique et dans la r\u00e9ponse aux besoins non satisfaits de la communaut\u00e9 des troubles h\u00e9r\u00e9ditaires de la coagulation dans son ensemble. Nous esp\u00e9rons qu\u2019elles r\u00e9pondront \u00e0 l\u2019appel \u00e0 l\u2019action que nous formulons ci-dessus, afin de r\u00e9duire les impacts potentiels \u00e0 l\u2019avenir sur les traitements pour les personnes atteintes d\u2019h\u00e9mophilie dans le monde entier.<\/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<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"

      Malgr\u00e9 des progr\u00e8s dans les soins, les personnes atteintes d\u2019h\u00e9mophilie du monde entier sont toujours confront\u00e9es \u00e0 de grandes difficult\u00e9s. Un manque d\u2019acc\u00e8s aux soins prive ainsi de traitement les deux tiers de la population mondiale atteinte d\u2019h\u00e9mophilie. M\u00eame dans les pays \u00e0 revenu \u00e9lev\u00e9, le traitement reste lourd et des saignements ponctuels se produisent. Si les th\u00e9rapies r\u00e9centes ont permis de r\u00e9pondre \u00e0 des besoins critiques, et que les th\u00e9rapies g\u00e9niques commercialis\u00e9es pour l’h\u00e9mophilie ont donn\u00e9 des r\u00e9sultats encourageants, mais variables, l\u2019horizon d\u2019un rem\u00e8de reste encore lointain pour les personnes atteintes d\u2019h\u00e9mophilie. L\u2019obtention de meilleurs soins pour la communaut\u00e9 mondiale de l\u2019h\u00e9mophilie exige une innovation constante.<\/p>\n","protected":false},"author":13,"featured_media":30514,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[197,338],"tags":[],"search-category":[85],"class_list":["post-138588","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-declarations-publiques-et-recommandations-de-la-fmh","category-featured-3-fr","search-category-article"],"yoast_head":"\nCommuniqu\u00e9 de la FMH sur les \u00e9volutions r\u00e9centes li\u00e9es aux th\u00e9rapies de l\u2019h\u00e9mophilie | FMH - F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie<\/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:\/\/wfh.org\/fr\/article\/communique-de-la-fmh-sur-les-evolutions-recentes-liees-aux-therapies-de-lhemophilie\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Communiqu\u00e9 de la FMH sur les \u00e9volutions r\u00e9centes li\u00e9es aux th\u00e9rapies de l\u2019h\u00e9mophilie\" \/>\n<meta property=\"og:description\" content=\"Malgr\u00e9 des progr\u00e8s dans les soins, les personnes atteintes d\u2019h\u00e9mophilie du monde entier sont toujours confront\u00e9es \u00e0 de grandes difficult\u00e9s. Un manque d\u2019acc\u00e8s aux soins prive ainsi de traitement les deux tiers de la population mondiale atteinte d\u2019h\u00e9mophilie. M\u00eame dans les pays \u00e0 revenu \u00e9lev\u00e9, le traitement reste lourd et des saignements ponctuels se produisent. Si les th\u00e9rapies r\u00e9centes ont permis de r\u00e9pondre \u00e0 des besoins critiques, et que les th\u00e9rapies g\u00e9niques commercialis\u00e9es pour l'h\u00e9mophilie ont donn\u00e9 des r\u00e9sultats encourageants, mais variables, l\u2019horizon d\u2019un rem\u00e8de reste encore lointain pour les personnes atteintes d\u2019h\u00e9mophilie. L\u2019obtention de meilleurs soins pour la communaut\u00e9 mondiale de l\u2019h\u00e9mophilie exige une innovation constante.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/wfh.org\/fr\/article\/communique-de-la-fmh-sur-les-evolutions-recentes-liees-aux-therapies-de-lhemophilie\/\" \/>\n<meta property=\"og:site_name\" content=\"FMH - F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/wfhemophilia\/\" \/>\n<meta property=\"article:published_time\" content=\"2025-03-26T14:18:03+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2025-04-02T14:40:52+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/wfh.org\/wp-content\/uploads\/2022\/03\/WFH-statement-News-FR.png\" \/>\n\t<meta property=\"og:image:width\" content=\"2501\" \/>\n\t<meta property=\"og:image:height\" content=\"1459\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"Mitch Semienchuk\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"\u00c9crit par\" \/>\n\t<meta name=\"twitter:data1\" content=\"Mitch Semienchuk\" \/>\n\t<meta name=\"twitter:label2\" content=\"Dur\u00e9e de lecture estim\u00e9e\" \/>\n\t<meta name=\"twitter:data2\" content=\"3 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/wfh.org\/fr\/article\/communique-de-la-fmh-sur-les-evolutions-recentes-liees-aux-therapies-de-lhemophilie\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/communique-de-la-fmh-sur-les-evolutions-recentes-liees-aux-therapies-de-lhemophilie\/\"},\"author\":{\"name\":\"Mitch Semienchuk\",\"@id\":\"https:\/\/wfh.org\/fr\/#\/schema\/person\/4aea5b13c1966452a640eef39423925b\"},\"headline\":\"Communiqu\u00e9 de la FMH sur les \u00e9volutions r\u00e9centes li\u00e9es aux th\u00e9rapies de l\u2019h\u00e9mophilie\",\"datePublished\":\"2025-03-26T14:18:03+00:00\",\"dateModified\":\"2025-04-02T14:40:52+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/communique-de-la-fmh-sur-les-evolutions-recentes-liees-aux-therapies-de-lhemophilie\/\"},\"wordCount\":525,\"publisher\":{\"@id\":\"https:\/\/wfh.org\/fr\/#organization\"},\"image\":{\"@id\":\"https:\/\/wfh.org\/fr\/article\/communique-de-la-fmh-sur-les-evolutions-recentes-liees-aux-therapies-de-lhemophilie\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/wfh.org\/wp-content\/uploads\/2022\/03\/WFH-statement-News-FR.png\",\"articleSection\":[\"D\u00e9clarations publiques et recommandations de la FMH\",\"Featured 3 - 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