{"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":"o-custo-das-doencas-raras-3","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/pt\/the-cost-of-rare-disease\/","title":{"rendered":"O custo das doen\u00e7as raras"},"content":{"rendered":"<p><span data-contrast=\"auto\">Viver com uma doen\u00e7a rara pode ser dif\u00edcil: desgastante mentalmente, fisicamente e at\u00e9 mesmo financeiramente.&nbsp;<\/span><span data-contrast=\"auto\">A&nbsp;<\/span><span data-contrast=\"auto\">2013<\/span><span data-contrast=\"auto\">&nbsp;pesquisa intitulada&nbsp;<\/span><a href=\"https:\/\/globalgenes.org\/wp-content\/uploads\/2013\/04\/ShireReport-1.pdf\" target=\"_blank\" rel=\"noopener\"><span data-contrast=\"none\">Relat\u00f3rio sobre o Impacto das Doen\u00e7as Raras<\/span><\/a><span data-contrast=\"auto\">&nbsp;(realizada nos EUA e no Reino Unido) perguntou a pacientes, profissionais de sa\u00fade e pagadores (que financiam os cuidados de sa\u00fade no \u00e2mbito do sistema de sa\u00fade de um pa\u00eds) quais eram suas perspectivas sobre o impacto das doen\u00e7as raras. Quase todas as 20 entidades pagadoras inclu\u00eddas na pesquisa relataram que o tratamento de uma doen\u00e7a rara \u00e9 relativamente mais caro e que os custos est\u00e3o aumentando mais rapidamente, em compara\u00e7\u00e3o com doen\u00e7as mais comuns.<\/span><span data-contrast=\"auto\">&nbsp;Este relat\u00f3rio tamb\u00e9m afirma que&nbsp;<\/span><span data-contrast=\"auto\">55% dos entrevistados dos EUA tiveram despesas m\u00e9dicas diretas n\u00e3o cobertas pelo seguro<\/span><span data-contrast=\"auto\">, e<\/span><span data-contrast=\"auto\">&nbsp;O 18% no Reino Unido n\u00e3o \u00e9 coberto pelo Servi\u00e7o Nacional de Sa\u00fade.<\/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\">Custos de se viver com uma doen\u00e7a rara<\/span><\/i><\/b><\/p>\n<p><span data-contrast=\"auto\">Os custos de se viver com qualquer condi\u00e7\u00e3o de sa\u00fade geralmente incluem:<\/span>&nbsp;<\/p>\n<ul>\n<li><b><span data-contrast=\"auto\">Custos diretos com sa\u00fade<\/span><\/b><span data-contrast=\"auto\">\u202f\u2013 medicamentos, equipamentos m\u00e9dicos, exames m\u00e9dicos, consultas com especialistas, interna\u00e7\u00f5es, transporte m\u00e9dico<\/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\">Custos diretos n\u00e3o relacionados \u00e0 sa\u00fade<\/span><\/b><span data-contrast=\"auto\">\u2013 profissionais de cuidados, transporte n\u00e3o m\u00e9dico, servi\u00e7os sociais<\/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\">Custos indiretos \u2013<\/span><\/b><span data-contrast=\"auto\">incapacidade para o trabalho, aposentadoria antecipada da pessoa ou cuidados<\/span><span data-contrast=\"auto\">doador<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/li>\n<\/ul>\n<p><span data-contrast=\"auto\">A seguir, voc\u00ea encontrar\u00e1 algumas das implica\u00e7\u00f5es financeiras mais desafiadoras&nbsp;<\/span><span data-contrast=\"auto\">observado em doen\u00e7as raras. Tamb\u00e9m est\u00e3o inclu\u00eddos&nbsp;<\/span><span data-contrast=\"auto\">grupo de pacientes e ind\u00fastria farmac\u00eautica&nbsp;<\/span><span data-contrast=\"auto\">iniciativas&nbsp;<\/span><span data-contrast=\"auto\">concebido para ajudar a enfrentar esses desafios.<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/p>\n<p><b><span data-contrast=\"auto\">Custo financeiro decorrente da mudan\u00e7a no estilo de vida<\/span><\/b><span data-ccp-props=\"{}\">&nbsp;<\/span><\/p>\n<p><span data-contrast=\"auto\">No caso de doen\u00e7as raras, como a doen\u00e7a de Erdheim-Chester, dependendo das diversas complexidades da doen\u00e7a, o paciente e\/ou o cuidador podem ter que se ausentar<\/span><span data-contrast=\"auto\">&nbsp;trabalho remunerado<\/span><span data-contrast=\"auto\">,&nbsp;<\/span><span data-contrast=\"auto\">reduzir&nbsp;<\/span><span data-contrast=\"auto\">horas semanais, ou at\u00e9 mesmo se aposentar antes do previsto.&nbsp;<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/p>\n<p><b><span data-contrast=\"auto\">Custo do seguro de sa\u00fade<\/span><\/b><span data-ccp-props=\"{}\">&nbsp;<\/span><\/p>\n<p><span data-contrast=\"auto\">Uma vez que a especializa\u00e7\u00e3o em&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\">Como a doen\u00e7a \u00e9 pouco comum, pode ser dif\u00edcil para os pacientes receberem o tratamento padr\u00e3o dos m\u00e9dicos de sua&nbsp;<\/span><span data-contrast=\"auto\">seguro&nbsp;<\/span><span data-contrast=\"auto\">rede.&nbsp;<\/span><span data-contrast=\"auto\">Para alguns, a cobertura se limita ao territ\u00f3rio do estado<\/span><span data-contrast=\"auto\">. Al\u00e9m da cobertura dos cuidados m\u00e9dicos, muitos pacientes podem ter que arcar com os custos das prescri\u00e7\u00f5es.&nbsp;<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/p>\n<p><b><span data-contrast=\"auto\">Viagens&nbsp;<\/span><\/b><b><span data-contrast=\"auto\">Custo&nbsp;<\/span><\/b><b><span data-contrast=\"auto\">Fardo<\/span><\/b><\/p>\n<p><span data-contrast=\"auto\">Outro custo oculto das doen\u00e7as raras \u00e9&nbsp;<\/span><span data-contrast=\"auto\">viagem:<\/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\">Organiza\u00e7\u00f5es que prestam assist\u00eancia a pessoas com doen\u00e7as raras:<\/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\">: Oferece apoio financeiro e orienta\u00e7\u00e3o a pacientes com doen\u00e7as espec\u00edficas e raras<\/span><span data-contrast=\"auto\">,<\/span><span data-contrast=\"auto\">&nbsp;doen\u00e7as cr\u00f4nicas nos EUA. Tamb\u00e9m h\u00e1 uma variedade de servi\u00e7os jur\u00eddicos dispon\u00edveis gratuitamente<\/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;Programa de Doa\u00e7\u00f5es Excepcionais da Funda\u00e7\u00e3o<\/span><\/i><span data-contrast=\"auto\">:&nbsp;<\/span><span data-contrast=\"auto\">O Rare Giving \u00e9 um programa da&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\">Programa de Assist\u00eancia ao Paciente da 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\">Desde 1987, a NORD oferece programas de assist\u00eancia para ajudar os pacientes a obter&nbsp;<\/span><span data-contrast=\"auto\">que salva vidas<\/span><span data-contrast=\"auto\">&nbsp;ou medicamentos essenciais \u00e0 vida que, de outra forma, n\u00e3o teriam condi\u00e7\u00f5es de adquirir. Esses programas oferecem medicamentos, assist\u00eancia financeira para o pagamento de pr\u00eamios de seguro e coparticipa\u00e7\u00f5es, aux\u00edlio para exames diagn\u00f3sticos e apoio para deslocamento para participar de ensaios cl\u00ednicos ou consultar especialistas na doen\u00e7a.<\/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\">A Air Charity Network \u00e9 uma organiza\u00e7\u00e3o beneficente que oferece acesso a pessoas carentes que precisam de transporte a\u00e9reo gratuito para unidades de sa\u00fade especializadas ou destinos distantes devido a crises familiares, comunit\u00e1rias ou nacionais.<\/span><span data-contrast=\"auto\">&nbsp;Ange<\/span><span data-contrast=\"auto\">l<\/span><span data-contrast=\"auto\">&nbsp;A Flight tamb\u00e9m prestar\u00e1 apoio aos passageiros que viajam para participar de ensaios cl\u00ednicos.&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\">Parceria para Assist\u00eancia com Medicamentos Prescritos (PPA)<\/span><\/i><span data-contrast=\"auto\">:&nbsp;<\/span><span data-contrast=\"auto\">As empresas americanas de pesquisa biofarmac\u00eautica t\u00eam como miss\u00e3o melhorar a sa\u00fade dos pacientes, promover a inova\u00e7\u00e3o m\u00e9dica e impulsionar o crescimento econ\u00f4mico. Os medicamentos que elas desenvolvem trazem a esperan\u00e7a de que seja encontrada uma cura, de que o tratamento seja eficaz e de que a vida dos pacientes possa ser&nbsp;<\/span><span data-contrast=\"auto\">aperfei\u00e7oado<\/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\">Alojamento para Fam\u00edlias do Instituto Nacional de Sa\u00fade<\/span><i><span data-contrast=\"auto\">:&nbsp;<\/span><\/i><span data-contrast=\"auto\">Um local acolhedor e tranquilo para as fam\u00edlias e entes queridos de pacientes adultos que est\u00e3o recebendo cuidados no<\/span><span data-contrast=\"auto\">&nbsp;<\/span><span data-contrast=\"auto\">Centro Cl\u00ednico do NIH (localizado em Bethesda, 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\">O custo de uma doen\u00e7a rara para as fam\u00edlias&nbsp;<\/span><span data-contrast=\"auto\">pode ser<\/span><span data-contrast=\"auto\">&nbsp;alto, mas h\u00e1 muitos que oferecem apoio&nbsp;<\/span><span data-contrast=\"auto\">programas<\/span><span data-contrast=\"auto\">&nbsp;dispon\u00edvel<\/span><span data-contrast=\"auto\">le<\/span><span data-contrast=\"auto\">, especialmente nos EUA<\/span><span data-contrast=\"auto\">,<\/span><span data-contrast=\"auto\">&nbsp;onde os custos s\u00e3o particularmente altos<\/span><span data-contrast=\"auto\">. Voc\u00ea j\u00e1 teve sucesso com<\/span><span data-contrast=\"auto\">&nbsp;Quais s\u00e3o esses servi\u00e7os dispon\u00edveis?<\/span><span data-ccp-props=\"{}\">&nbsp;<\/span><\/p>\n<p><span data-contrast=\"auto\">O link a seguir \u00e9 um \u00f3timo recurso que re\u00fane muitos dos programas mencionados acima em um \u00fanico lugar.&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\/pt\/wp-json\/wp\/v2\/posts\/13060","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/comments?post=13060"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/posts\/13060\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/media\/13061"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/media?parent=13060"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/categories?post=13060"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/tags?post=13060"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}