Chile: Rare diseases challenges within Chilean healthcare system and legislation
In an article published in the Orphanet Journal of Rare Diseases, seven experts on rare diseases (RD) present the RD context in Chile and in other Latin American countries, as well as the challenges of Chileans living with a rare disease. The experts stressed challenges within the Chilean healthcare system, amongst them, the difficult access to the right to healthcare for patients, the epidemiological data that is collected through the National Health Survey and which does not include RD data, the non-existence of a common definition of RD within Latin American countries (some countries are using the European definition (Mexico and Argentina), however in Brazil, according to the country’s definition, a RD affects fewer than 65 out of 100,000 individuals, whilst Chile and Peru do not have a clear RD definition. If other Latin American countries, like Argentina, Colombia, and Peru, have already adopted appropriated laws for RDs, in Chile, RD still do not have a legal context and the access to health care for RD patients is at a higher cost.
The experts recommended that the country implements a regulatory strategy on RDs (a comprehensive health policy, a national registry of RD patients), and strengthens its public health policy as recommended by the Organisation for Economic Co-operation and Development (OECD). Chile joined the Asia-Pacific Economic Cooperation (APEC) Action Plan on RD, a policy that will benefit Chileans living with a RD.
