La importancia de la salud para la justicia social ha aumentado desde finales del siglo XX, en particular tras la Declaración de Copenhague de 1995: “las personas tienen derecho a una vida sana y productiva en armonía con el medio ambiente”. La mayoría de las personas en el mundo aún no gozan de buena salud. La comunidad internacional ha realizado esfuerzos para abordar esta situación, según los principios de equidad y justicia social. La Agenda 2030 constituye un ejemplo de estos esfuerzos, al situar la salud en el centro del programa, reconocer la existencia de los determinantes sociales de la salud, afirmar la necesidad de abordar las causas de las inequidades en salud y atender las necesidades de los grupos desfavorecidos. Las personas con enfermedades raras enfrentan riesgos y desafíos específicos, principalmente debido a las necesidades de salud insatisfechas derivadas de la falta de investigación y desarrollo de tecnologías médicas adecuadas. En este artículo, se exploran las razones que explican las injusticias a las que se enfrentan estos pacientes, así como las maneras en que un enfoque hacia las personas con enfermedades raras basado en los derechos humanos puede proporcionar argumentos a favor de que los Estados actúen. Al considerar a la ciencia como un derecho complementario del derecho a la salud, se argumenta que los estados deben promover el progreso científico para tratar las enfermedades raras y hacer que las aplicaciones de la ciencia sean accesibles y asequibles, contribuyendo así a la creación de una sociedad justa y equitativa.
Esta obra está bajo una licencia internacional Creative Commons Atribución-NoComercial 4.0.
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