Rare diseases in Chile: challenges and recommendations in universal health coverage context

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dc.contributor.authorEncina Silva, Gonzalo
dc.contributor.authorCastillo-Laborde, Carla
dc.contributor.authorLecaros, Juan Alberto
dc.contributor.authorDubois-Camacho, Karen
dc.contributor.authorCalderón, Juan
dc.contributor.authorAguilera, Ximena
dc.contributor.authorKlein, Andrés
dc.contributor.authorRepetto, Gabriela
dc.date.accessioned2020-03-09T15:33:24Z
dc.date.available2020-03-09T15:33:24Z
dc.date.issued2019
dc.descriptionCentro de Genética y Genómica; Centro de Epidemiología y Políticas de Salud; Observatorio de Bioética y Derecho. ICIM
dc.description.abstractRare diseases (RDs) are a large number of diverse conditions with low individual prevalence, but collectively may affect up to 3.5-5.9% of the population. They have psychosocial and economic impact on patients and societies, and are a significant problem for healthcare systems, especially for countries with limited resources. In Chile, financial protection exists for 20 known RDs through different programs that cover diagnosis and treatments. Although beneficial for a number of conditions, most RD patients are left without a proper legal structure that guarantees a financial coverage, and in a vulnerable situation. In this review, we present and analyze the main challenges of the Chilean healthcare system and legislation on RDs, and other ambits of the RD ecosystem, including patient advocacy groups and research. Finally, we propose a set of policy recommendations that includes creating a patient registry, eliciting social preferences on health and financial coverage, improving access to clinical genetic services and therapies, promoting research on RDs and establishing a Latin-American cooperation network, all aimed at promoting equitable quality healthcare access for people living with RDs
dc.identifier.citationOrphanet J Rare Dis. 2019 Dec 11;14(1):289. doi: 10.1186/s13023-019-1261-8.
dc.identifier.urihttp://hdl.handle.net/11447/3126
dc.identifier.urihttps://doi.org/10.1186/s13023-019-1261-8
dc.language.isoen
dc.publisherBioMed Central
dc.subjectChile
dc.subjectHealth policy
dc.subjectRare diseases
dc.subjectUniversal health coverage
dc.titleRare diseases in Chile: challenges and recommendations in universal health coverage context
dc.typeArticle

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