A. The Petitioners 6. The petitioners said that Martina Rebecca Vera Rojas was diagnosed with Leigh's syndrome in 2007, when she was eight months old. They reported that at that time the family had health insurance coverage provided by MasVida S.A., a health insurance institution (Institución de Salud Previsional) (hereinafter "the Isapre") that included special coverage for catastrophic diseases (hereinafter "CAEC” for the Spanish, Cobertura Adicional para Enfermedades Catastróficas). They said that once the CAEC was activated, the alleged victim was included in the in-home care regime (régimen de hospitalización domiciliaria) (hereinafter "RHD") necessary for her condition. They added that on October 13, 2010, the Isapre, on the basis of a regulatory instrument of an administrative nature, withdrew the RHD on the premise that the alleged victim was no longer eligible for it because the condition was reclassified as chronic whose coverage was excluded. 7. According to the petitioners, the father and mother of the alleged victim brought an action for protection that eventually reached the CSJ, which overturned the decision at first instance and ruled on May 9, 2011, that the withdrawal of the RHD was lawful, as a result of which the regime was terminated that same day. They added that in December 2011, the family initiated an arbitration process before the Superintendency of Health (hereinafter "the Superintendency"), which ruled in favor of the alleged victim on August 27, 2012. The petitioners indicated that since the reinstatement of the RHD, the life of the family has become "a continuous struggle to ensure that their daughter receives the service that keeps her alive," given that periodically they have to institute proceedings to avert the termination of health care services. 8. They alleged that by validating through the CSJ the decision of the Isapre arbitrarily and without legal justification to withdraw the RHD, the State violated the rights to life, humane treatment, and health of Martina Vera Rojas, in addition to its obligation to adopt special measures for her as a child with a disability. They also held that the design of the health care system, susceptible as it is to arbitrary decisions and insufficiently regulated, created a problem of access to health care services by the alleged victim that is attributable to Chile. They reiterated that this lack of access for the girl Martina to certain health care procedures as a patient with Leigh's syndrome, exposed her to a serious risk to her life and integrity. 9. They said that the State violated the right to integrity of the mother and father of the alleged victim since, by accepting the removal of their daughter from RHD, it caused them suffering and chronic posttraumatic stress, due to the uncertainty surrounding the survival of the girl because of her lack of access to treatment. 10. It indicated that the State, by virtue of the ruling of the CSJ, failed to act with due diligence within a reasonable time, that the reasoning provided in the judicial decision failed to take account of the alleged victim’s status as a child, and that during the proceedings before the Court they were unable to present arguments since that judicial instance does not contemplate that possibility. They noted that the guarantee of impartiality was violated because the composition of the Court included an alternate associate justice (abogado integrante) with a conflict of interest in favor of the Isapre. Therefore, they argued that the rights to a fair trial judicial and judicial protection were violated. 11. They claimed that Chile has violated its obligation to progressively develop the right to health by failing to ensure that, under the extended privatized scheme, providers adjust their rules and practices in line with domestic and international standards in order to ensure the right to health. 12. They highlighted the existence of a context in which access to health services is characterized by a downgrading of social rights such as the right to health and a lack of regulatory alignment with international standards in that area. They claimed that access to health care is determined by the bottom line of Isapres, which generates situations of abuse and unilateral changes in contractual conditions that are neither controlled nor regulated by the State, generating an excessive burden on patients who are forced to contend with legal proceedings against the service providers. 2

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