Promote comprehensive health care for people with Uncommon Disease. Sanctioned: June 29, 2011 Enacted in Fact: July 29, 2011
The Senate and Chamber of Deputies of the Argentine Nation, meeting in Congress, etc., are sanctioned by law:
Article 1-The purpose of this law is to promote the comprehensive care of the health of people with Uncommon Diseases (EPF) and to improve the quality of life for them and their families.
Article 2-The effects of this law are considered to be EPF to those whose prevalence in the population is equal to or less than one in two thousand (1 in 2000) persons, referring to the national epidemiological situation.
ARTICLE 3-In the framework of comprehensive assistance established for persons with EPF, the implementing authority should promote the following objectives: a) Promote access to health care for people with EPF, including actions for early detection, diagnosis, treatment and recovery, in the framework of effective access to the right to health for all persons; To promote, in its field, the creation of a specialized agency in EPF, of a multidisciplinary nature, to coordinate with the judicial health authorities, the implementation of the policies, strategies and actions for the comprehensive care of People with EPF and their families; c) To encourage the participation of people's associations with EPF and their family members in the formulation of policies, strategies and actions related to this problem; d) Develop an EPF listing, according to the prevalence of these diseases in our country, which will be ratified or modified Once a year by the implementing authority of this law; e) to encourage the periodic performance of epidemiological studies that account for the prevalence of EPF at regional and national level; f) Include the monitoring of EPFs in the System National of Epidemiological Surveillance; g) Promote the creation of a National Register of Persons with EPF in the field of the Ministry of Health of the Nation, with the protection of the protection of confidentiality of personal data; h) Promote the development of regional centers and services specialized in the care of people with EPF, with appropriate professionals and technology and the relevant budgetary allocation; (i) Promote the articulation of referral centres and services to people with EPF, with health facilities at all levels of complexity, in the framework of the strategy of care
(j) Promoting the development and strengthening of centres of counselling, care and research in diseases of genetic origin which include diagnostic services for relevant complementary studies; The link between the networks of services that extend to children, girls and adolescents with EPF with the services of adult care, favoring continuity in the care of the affected people, recognizing the particularity of each life stage; Strengthen and coordinate technically and financially the implementation of the neonatal research and detection of congenital diseases, within the framework of law 23,413 and its modifications, and law 26.279, in coordination with the provincial health authorities; m) Promote detection strategies and actions In the context of the follow-up and attention to other health problems, the EPF has established the importance of the increase of the criteria for the suspicion of diagnosis, ranking the perspective of the users; continuing training of health professionals and other social partners, in all In the context of the primary health care strategy; or) Promote the health partner research and the development of appropriate technologies for the health of the people with EPF, in the context of the primary health care strategy; problems of people with EPF, in coordination with the Ministry of Science, Technology and Productive Innovation of the Nation; p) Promote the articulation with the Ministry of Education of the Nation and the respective jurisdictional authorities, in terms, to encourage the inclusion of people with EPF; (q) to promote the accessibility of people with EPF to sport and cultural activities, according to their needs and possibilities; r) To promote the articulation with programs and actions for the attention of persons with disabilities, when corresponding; s) To promote the development and production of medicines and medical products intended for the early detection, diagnosis, treatment and recovery of persons with EPF; t) Promote the dissemination of information, to users, family, professionals and health technicians, through the development of a Public Information Network in EPF, in the field of the Ministry of Health Nation, free access and connected with other national and international information networks; u) Promote knowledge of the problem of EPF, raising awareness among the general population about the importance of social inclusion persons with EPF and their families, on the basis of the strategies and actions considered relevant; (v) Encourage the participation of national EPF associations in international networks of people affected by EPF and their families.
ARTICLE 4-The enforcement authority of this law shall be the Ministry of Health of the Nation.
ARTICLE 5-What is established in this law must integrate the programs that the implementation authority has to the effect and the expenses that demand its fulfillment will be taken care of with the items that to the effect the budget for the year General of Public Administration for the Ministry of Health of the Nation.
Article 6-The social works framed in laws 23,660 and 23,661, the Social Work of the Judicial Branch of the Nation, the Directorate of Social Aid for the Staff of the National Congress, the entities of pre-paid medicine and the entities that pay attention to the staff of the universities, so
as well as all those agents who provide medical care services to their members regardless of the legal status they hold, they must provide care coverage to people with EPF, including at least the benefits that determine the implementing authority.
Article 7-The Ministry of Health of the Nation must promote agreements with the judicial authorities, to provide comprehensive health care to persons with EPF, who are not included in the article 6 of this law, as establish the rules.
Article 8-Invite the provinces and the Autonomous City of Buenos Aires to adhere to this law.
ARTICLE 9-Commune to the national executive branch. GIVEN IN THE SESSION HALL OF THE ARGENTINE CONGRESS, IN BUENOS AIRES, AT THE TWENTY-NINE DAYS OF THE MONTH OF JUNE OF THE YEAR TWO THOUSAND ELEVEN. -REGISTERED UNDER NO. 26,689-JULY C. C. COBOS. -EDUARDO A. FELLNER. -Enrique Hidalgo. -Juan H. Estrada.
Date of publication: 03/08/2011