{"id":13060,"date":"2020-05-05T14:25:57","date_gmt":"2020-05-05T14:25:57","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=13060"},"modified":"2020-05-05T14:25:57","modified_gmt":"2020-05-05T14:25:57","slug":"le-cout-des-maladies-rares-2","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/fr\/the-cost-of-rare-disease\/","title":{"rendered":"Le co\u00fbt des maladies rares"},"content":{"rendered":"<p><span data-contrast=\"auto\">Vivre avec une maladie rare peut \u00eatre difficile : cela peut \u00eatre \u00e9puisant sur le plan mental, physique, voire financier.&nbsp;<\/span><span data-contrast=\"auto\">A&nbsp;<\/span><span data-contrast=\"auto\">2013<\/span><span data-contrast=\"auto\">&nbsp;enqu\u00eate intitul\u00e9e \u00ab\u00a0\u00bb&nbsp;<\/span><a href=\"https:\/\/globalgenes.org\/wp-content\/uploads\/2013\/04\/ShireReport-1.pdf\" target=\"_blank\" rel=\"noopener\"><span data-contrast=\"none\">Rapport sur l'impact des maladies rares<\/span><\/a><span data-contrast=\"auto\">&nbsp;(r\u00e9alis\u00e9e aux \u00c9tats-Unis et au Royaume-Uni) a interrog\u00e9 des patients, des professionnels de sant\u00e9 et des payeurs (qui financent les soins de sant\u00e9 au sein du syst\u00e8me de sant\u00e9 d\u2019un pays) afin de recueillir leur point de vue sur l\u2019impact des maladies rares. La quasi-totalit\u00e9 des 20 payeurs interrog\u00e9s dans le cadre de cette enqu\u00eate ont indiqu\u00e9 que le traitement d\u2019une maladie rare est relativement plus co\u00fbteux et que les co\u00fbts augmentent plus rapidement que pour les pathologies plus courantes.<\/span><span data-contrast=\"auto\">&nbsp;Ce rapport indique \u00e9galement que&nbsp;<\/span><span data-contrast=\"auto\">55% des personnes interrog\u00e9es aux \u00c9tats-Unis ont engag\u00e9 des frais m\u00e9dicaux directs non pris en charge par leur assurance<\/span><span data-contrast=\"auto\">, et<\/span><span data-contrast=\"auto\">&nbsp;Au Royaume-Uni, le traitement 18% n'est pas pris en charge par le Service national de sant\u00e9.<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/p>\n<p><b><i><span data-contrast=\"auto\">C<\/span><\/i><\/b><b><i><span data-contrast=\"auto\">Les co\u00fbts li\u00e9s \u00e0 la vie avec une maladie rare<\/span><\/i><\/b><\/p>\n<p><span data-contrast=\"auto\">Les co\u00fbts li\u00e9s \u00e0 la vie quotidienne lorsqu'on souffre d'une affection quelconque comprennent g\u00e9n\u00e9ralement :<\/span>&nbsp;<\/p>\n<ul>\n<li><b><span data-contrast=\"auto\">Co\u00fbts directs des soins de sant\u00e9<\/span><\/b><span data-contrast=\"auto\">\u202f\u2013 m\u00e9dicaments, mat\u00e9riel m\u00e9dical, examens m\u00e9dicaux, consultations chez des sp\u00e9cialistes, hospitalisations, transport m\u00e9dical<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"1\" aria-setsize=\"-1\" data-aria-posinset=\"2\" data-aria-level=\"1\"><b><span data-contrast=\"auto\">Co\u00fbts directs non li\u00e9s aux soins de sant\u00e9<\/span><\/b><span data-contrast=\"auto\">\u2013 professionnels de l'accompagnement, transport non m\u00e9dical, services sociaux<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"1\" aria-setsize=\"-1\" data-aria-posinset=\"3\" data-aria-level=\"1\"><b><span data-contrast=\"auto\">Co\u00fbts indirects \u2013<\/span><\/b><span data-contrast=\"auto\">incapacit\u00e9 de travail, d\u00e9part anticip\u00e9 \u00e0 la retraite de la personne ou prise en charge<\/span><span data-contrast=\"auto\">donateur<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/li>\n<\/ul>\n<p><span data-contrast=\"auto\">Vous trouverez ci-dessous certaines des implications financi\u00e8res les plus complexes&nbsp;<\/span><span data-contrast=\"auto\">observ\u00e9es dans le cadre d'une maladie rare. Sont \u00e9galement incluses&nbsp;<\/span><span data-contrast=\"auto\">les associations de patients et l'industrie pharmaceutique&nbsp;<\/span><span data-contrast=\"auto\">initiatives&nbsp;<\/span><span data-contrast=\"auto\">con\u00e7u pour aider \u00e0 relever ces d\u00e9fis.<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/p>\n<p><b><span data-contrast=\"auto\">Le poids financier li\u00e9 au changement de mode de vie<\/span><\/b><span data-ccp-props=\"{}\">&nbsp;<\/span><\/p>\n<p><span data-contrast=\"auto\">Dans le cas de maladies rares telles que la maladie d'Erdheim-Chester, en fonction des diff\u00e9rentes complexit\u00e9s li\u00e9es \u00e0 la maladie, le patient et\/ou la personne qui s'occupe de lui peuvent \u00eatre amen\u00e9s \u00e0 devoir quitter<\/span><span data-contrast=\"auto\">&nbsp;emploi r\u00e9mun\u00e9r\u00e9<\/span><span data-contrast=\"auto\">,&nbsp;<\/span><span data-contrast=\"auto\">r\u00e9duire&nbsp;<\/span><span data-contrast=\"auto\">r\u00e9duire son temps de travail hebdomadaire, voire prendre sa retraite plus t\u00f4t que pr\u00e9vu.&nbsp;<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/p>\n<p><b><span data-contrast=\"auto\">Le poids de l'assurance maladie<\/span><\/b><span data-ccp-props=\"{}\">&nbsp;<\/span><\/p>\n<p><span data-contrast=\"auto\">\u00c9tant donn\u00e9 que l'expertise en mati\u00e8re de&nbsp;<\/span><span data-contrast=\"auto\">Erdheim-Chester<\/span><span data-contrast=\"auto\">&nbsp;<\/span><span data-contrast=\"auto\">D<\/span><span data-contrast=\"auto\">Lorsque la maladie est localis\u00e9e, il peut \u00eatre difficile pour les patients de b\u00e9n\u00e9ficier des soins standard prodigu\u00e9s par les m\u00e9decins de leur&nbsp;<\/span><span data-contrast=\"auto\">assurance&nbsp;<\/span><span data-contrast=\"auto\">r\u00e9seau.&nbsp;<\/span><span data-contrast=\"auto\">Pour certains, la couverture n'est valable qu'\u00e0 l'int\u00e9rieur des fronti\u00e8res de l'\u00c9tat<\/span><span data-contrast=\"auto\">. Au-del\u00e0 de la prise en charge des soins, de nombreux patients peuvent \u00eatre confront\u00e9s \u00e0 une charge financi\u00e8re li\u00e9e aux m\u00e9dicaments sur ordonnance.&nbsp;<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/p>\n<p><b><span data-contrast=\"auto\">Voyages&nbsp;<\/span><\/b><b><span data-contrast=\"auto\">Co\u00fbt&nbsp;<\/span><\/b><b><span data-contrast=\"auto\">Fardeau<\/span><\/b><\/p>\n<p><span data-contrast=\"auto\">Un autre co\u00fbt cach\u00e9 li\u00e9 aux maladies rares est&nbsp;<\/span><span data-contrast=\"auto\">voyages :<\/span><span data-contrast=\"auto\">&nbsp;attending doctor visits, outpatient appointments, clinical research visits and hospital stays all cost money. Almost every person with a rare disease could incur travel costs; for example, when they visit dedicated centers away from home or because disease symptoms limit their everyday mobility.<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/p>\n<p><span data-ccp-props=\"{}\">&nbsp;<\/span><b><i><span data-contrast=\"auto\">Organismes venant en aide aux personnes atteintes de maladies rares :<\/span><\/i><\/b><span data-ccp-props=\"{}\">&nbsp;<\/span><\/p>\n<ul>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"4\" aria-setsize=\"-1\" data-aria-posinset=\"1\" data-aria-level=\"1\"><i><span data-contrast=\"auto\">Patient Services, Inc.<\/span><\/i><span data-contrast=\"auto\">: Apporte un soutien financier et des conseils aux patients atteints de maladies sp\u00e9cifiques et rares<\/span><span data-contrast=\"auto\">,<\/span><span data-contrast=\"auto\">&nbsp;les maladies chroniques aux \u00c9tats-Unis. Divers services juridiques sont \u00e9galement propos\u00e9s gratuitement<\/span><span data-contrast=\"auto\">.<\/span><span data-contrast=\"auto\">&nbsp;(<\/span><a href=\"http:\/\/www.patientservicesinc.org\/\" target=\"_blank\" rel=\"noopener\"><span data-contrast=\"none\">http:\/\/www.patientservicesinc.org\/<\/span><\/a><span data-contrast=\"auto\">)<\/span><\/li>\n<li><span data-ccp-props=\"{&quot;134233117&quot;:true,&quot;134233118&quot;:true,&quot;134233279&quot;:true}\">&nbsp;<\/span><i><span data-contrast=\"auto\">EveryLife<\/span><\/i><i><span data-contrast=\"auto\">&nbsp;Programme \u00ab Rare Giving \u00bb de la Fondation<\/span><\/i><span data-contrast=\"auto\">:&nbsp;<\/span><span data-contrast=\"auto\">\u00ab Rare Giving \u00bb est un programme de la&nbsp;<\/span><span data-contrast=\"auto\">EveryLife<\/span><span data-contrast=\"auto\">&nbsp;Foundation for Rare Diseases to support individual rare disease patients as well as organizations that promote collaboration across rare diseases and engage patients, researchers and others in the community in public policy<\/span><span data-contrast=\"auto\">.<\/span><span data-contrast=\"auto\">&nbsp;(<\/span><a href=\"https:\/\/everylifefoundation.org\/\" target=\"_blank\" rel=\"noopener\"><span data-contrast=\"none\">https:\/\/everylifefoundation.org<\/span><\/a><span data-contrast=\"auto\">)&nbsp;<\/span><span data-ccp-props=\"{&quot;134233117&quot;:true,&quot;134233118&quot;:true,&quot;134233279&quot;:true}\">&nbsp;<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"4\" aria-setsize=\"-1\" data-aria-posinset=\"3\" data-aria-level=\"1\"><i><span data-contrast=\"auto\">Programme d'aide aux patients de NORD (<\/span><\/i><i><span data-contrast=\"auto\">RareCare<\/span><\/i><span data-contrast=\"auto\">)<\/span><span data-contrast=\"auto\">:&nbsp;<\/span><span data-contrast=\"auto\">Depuis 1987, NORD propose des programmes d'aide destin\u00e9s \u00e0 aider les patients \u00e0 obtenir&nbsp;<\/span><span data-contrast=\"auto\">qui sauve des vies<\/span><span data-contrast=\"auto\">&nbsp;ou des m\u00e9dicaments indispensables \u00e0 leur survie qu\u2019ils ne pourraient pas se permettre autrement. Ces programmes fournissent des m\u00e9dicaments, une aide financi\u00e8re pour le paiement des primes d\u2019assurance et des tickets mod\u00e9rateurs, une aide pour les examens diagnostiques, ainsi qu\u2019une aide au d\u00e9placement pour participer \u00e0 des essais cliniques ou consulter des sp\u00e9cialistes de la maladie.<\/span><span data-contrast=\"auto\">&nbsp;(<\/span><a href=\"https:\/\/rarediseases.org\/for-patients-and-families\/help-access-medications\/patient-assistance-programs-2\/\" target=\"_blank\" rel=\"noopener\"><span data-contrast=\"none\">https:\/\/rarediseases.org\/for-patients-and-families\/help-access-medications\/patient-assistance-programs-2\/<\/span><\/a><span data-contrast=\"auto\">)&nbsp;<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true}\">&nbsp;<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"4\" aria-setsize=\"-1\" data-aria-posinset=\"4\" data-aria-level=\"1\"><i><span data-contrast=\"auto\">Air Charity Network (Angel Flight)<\/span><\/i><i><span data-contrast=\"auto\">:<\/span><\/i><i><span data-contrast=\"auto\">&nbsp;<\/span><\/i><span data-contrast=\"auto\">Air Charity Network est une association caritative qui permet aux personnes dans le besoin d'acc\u00e9der \u00e0 un transport a\u00e9rien gratuit vers des \u00e9tablissements de soins sp\u00e9cialis\u00e9s ou des destinations \u00e9loign\u00e9es, en cas de crise familiale, communautaire ou nationale.<\/span><span data-contrast=\"auto\">&nbsp;Ange<\/span><span data-contrast=\"auto\">l<\/span><span data-contrast=\"auto\">&nbsp;Flight assurera \u00e9galement la coordination pour les personnes se rendant \u00e0 des essais cliniques.&nbsp;<\/span><span data-contrast=\"auto\">(<\/span><a href=\"http:\/\/aircharitynetwork.org\/\" target=\"_blank\" rel=\"noopener\"><span data-contrast=\"none\">http:\/\/aircharitynetwork.org\/<\/span><\/a><span data-contrast=\"auto\">)<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"4\" aria-setsize=\"-1\" data-aria-posinset=\"4\" data-aria-level=\"1\"><i><span data-contrast=\"auto\">Partenariat pour l'aide \u00e0 l'achat de m\u00e9dicaments sur ordonnance (PPA)<\/span><\/i><span data-contrast=\"auto\">:&nbsp;<\/span><span data-contrast=\"auto\">Les entreprises am\u00e9ricaines de recherche biopharmaceutique se sont donn\u00e9 pour mission d\u2019am\u00e9liorer la sant\u00e9 des patients, de faire progresser l\u2019innovation m\u00e9dicale et de stimuler la croissance \u00e9conomique. Les m\u00e9dicaments qu\u2019elles mettent au point donnent l\u2019espoir qu\u2019un rem\u00e8de puisse \u00eatre trouv\u00e9, que les traitements soient efficaces et que la vie des patients puisse \u00eatre&nbsp;<\/span><span data-contrast=\"auto\">am\u00e9lior\u00e9<\/span><span data-contrast=\"auto\">.<\/span><span data-contrast=\"auto\">&nbsp;<\/span><a href=\"https:\/\/medicineassistancetool.org\/\" target=\"_blank\" rel=\"noopener\"><span data-contrast=\"none\">https:\/\/medicineassistancetool.org\/<\/span><\/a><span data-contrast=\"auto\">&nbsp;<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true}\">&nbsp;<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"4\" aria-setsize=\"-1\" data-aria-posinset=\"4\" data-aria-level=\"1\"><span data-contrast=\"auto\">Foyer familial de l'Institut national de la sant\u00e9<\/span><i><span data-contrast=\"auto\">:&nbsp;<\/span><\/i><span data-contrast=\"auto\">Un lieu de r\u00e9pit, \u00e0 l'ambiance chaleureuse, destin\u00e9 aux familles et aux proches des patients adultes pris en charge \u00e0 l'h\u00f4pital<\/span><span data-contrast=\"auto\">&nbsp;<\/span><span data-contrast=\"auto\">Centre clinique des NIH (situ\u00e9 \u00e0 Bethesda, dans le Maryland)<\/span><span data-contrast=\"auto\">.<\/span><span data-contrast=\"auto\">&nbsp;<\/span><span data-contrast=\"auto\">&nbsp;(<\/span><a href=\"https:\/\/clinicalcenter.nih.gov\/familylodge\/\" target=\"_blank\" rel=\"noopener\"><span data-contrast=\"none\">https:\/\/clinicalcenter.nih.gov\/familylodge\/<\/span><\/a><span data-contrast=\"auto\">)<\/span><span data-contrast=\"auto\">&nbsp;<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true}\">&nbsp;<\/span><\/li>\n<\/ul>\n<p><span data-ccp-props=\"{&quot;134233117&quot;:true,&quot;134233118&quot;:true,&quot;134233279&quot;:true,&quot;335559685&quot;:720}\">&nbsp;<\/span><\/p>\n<p><span data-contrast=\"auto\">Le co\u00fbt d'une maladie rare pour les familles&nbsp;<\/span><span data-contrast=\"auto\">peut \u00eatre<\/span><span data-contrast=\"auto\">&nbsp;\u00e9lev\u00e9, mais il existe de nombreuses sources de soutien&nbsp;<\/span><span data-contrast=\"auto\">programmes<\/span><span data-contrast=\"auto\">&nbsp;disponible<\/span><span data-contrast=\"auto\">le<\/span><span data-contrast=\"auto\">, notamment aux \u00c9tats-Unis<\/span><span data-contrast=\"auto\">,<\/span><span data-contrast=\"auto\">&nbsp;l\u00e0 o\u00f9 les co\u00fbts sont particuli\u00e8rement \u00e9lev\u00e9s<\/span><span data-contrast=\"auto\">. Avez-vous obtenu de bons r\u00e9sultats avec<\/span><span data-contrast=\"auto\">&nbsp;Quels sont les services propos\u00e9s ?<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/p>\n<p><span data-contrast=\"auto\">Le lien suivant constitue une excellente ressource qui regroupe en un seul endroit bon nombre des programmes mentionn\u00e9s ci-dessus.&nbsp;<\/span><a href=\"https:\/\/everylifefoundation.org\/financial-support\/\" target=\"_blank\" rel=\"noopener\"><span data-contrast=\"none\">https:\/\/everylifefoundation.org\/financial-support\/.<\/span><\/a><span data-ccp-props=\"{}\">&nbsp;<\/span><\/p>","protected":false},"excerpt":{"rendered":"<p>Living with a rare disease can be hard: mentally, physically, and even financially draining.&nbsp;A&nbsp;2013&nbsp;survey called the&nbsp;Rare Disease Impact Report&nbsp;(conducted in the US and UK) asked patients, healthcare professionals and payers [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":13061,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","cybocfi_hide_featured_image":"","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[67],"tags":[83,89,56,91,92,93,90,82,52],"class_list":["post-13060","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-community-support","tag-blood-cancer","tag-cost-of-living","tag-erdheim-chester","tag-financial-help","tag-healthcare-costs","tag-insurance-help","tag-medical-bills","tag-rare-cancer","tag-rare-disease"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/13060","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/comments?post=13060"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/13060\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media\/13061"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media?parent=13060"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/categories?post=13060"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/tags?post=13060"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}