Las medidas de acción afirmativa para las personas con enfermedades raras o huérfanas y sus familias cuidadoras en el Ecuador.

Abstract

This essay addresses the obligation of the Ecuadorian State to implement affirmative action measures for individuals with rare or orphan diseases, from a constitutional and human rights perspective. It begins with the analysis of national legislation, particularly Article 35 of the Constitution, which establishes priority care for those suffering from high-complexity diseases. Likewise, it examines state duties, including those of the Constitutional Court, which has pointed out organizational shortcomings in the health system regarding vulnerable populations. This work develops a doctrinal and jurisprudential analysis with a qualitative approach on the experience of the caregiving mother, seeking to identify problems of legal recognition in practical application. It also includes an analysis of other legal frameworks such as those of the United States, the European Union, the United Kingdom, and Australia, where greater legal protection exists for these cases. The findings revealed the absence of public policies on this matter and the exclusion of caregiving families. As a proposal, the creation of a special law is highlighted, as well as a public fund for orphan drugs and the priority legal protection of caregiving families.