Judicialization of access to medical services: the case of Nusinersen (Spinraza) in the chilean courts

Abstract

Introduction: Spinal muscular atrophy is a neurodegenerative disease that affects the motor neurons of the anterior horn of the spinal cord. In 2016, the first disease-modifying drug for this condition, Nusinersen, was approved in the United States and is marketed under the
name Spinraza. Access to this medication is not included in the benefits provided by either the public or private healthcare systems in Chile. Its extremely high cost makes it unaffordable for the families of those affected by the disease, leading them to file constitutional protection actions in court to obtain it.

Materials and Methods: An online search was conducted using the terms Spinraza and Nusinersen within the vLex legal database, as well as in the health case compilations from the Courts of Appeals and the Supreme Court, hosted in the Jurisprudential Database of the Chilean Judiciary.

Results: A total of 41 legal cases corresponding to 44 patients were analyzed. The average
time between the date of the drug’s medical indication and the court’s final ruling was 313 days. In many instances, the drug was administered at clinical stages where no proven benefit exists

Discussion: The process of judicializing access to this medication is inefficient, despite the
fact that most protection actions are eventually granted