OF THE NEED FOR EFFECTIVE BRAZILIAN PUBLIC POLICIES FOR PATIENTS WITH AMIOTROPHIC LATERAL SCLEROSIS - ALS
Autor(a) principal: | |
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Data de Publicação: | 2018 |
Outros Autores: | , |
Tipo de documento: | Artigo |
Idioma: | por |
Título da fonte: | Revista JRG de Estudos Acadêmicos |
Texto Completo: | http://revistajrg.com/index.php/jrg/article/view/20 |
Resumo: | The Federal Constitution is based on the principle of the dignity of the human person, contemplating the right to health and social welfare. However, the patients affected by Amyotrophic Lateral Sclerosis - ALS, rare, neurodegenerative and progressive disease, find obstacles to universal and necessary access. To review and propagate the reality faced by patients with ALS, such as physical and psychological challenges, as well as judicial and extrajudicial obstacles to the resolution of their demands, aiming at unfolding the patients' quality of life, are the objectives of this study, using as a methodology the bibliographic research. The recognized high vulnerability of patients with ALS and the State's obligation to provide public policies to assist them have been verified. The possibility of adopting specific and effective public policies in the area (fostering basic and applied research, spreading a general education, incorporating new technologies, procedures and medicines into the public health system, among others) is envisaged as an important tool in increasing quality of life (including the self- esteem of patients and their families, who, in most cases, are also their caregivers) of all actors involved in health care, in line with dignity of human person. |
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OF THE NEED FOR EFFECTIVE BRAZILIAN PUBLIC POLICIES FOR PATIENTS WITH AMIOTROPHIC LATERAL SCLEROSIS - ALSDA NECESSIDADE DE POLÍTICAS PÚBLICAS BRASILEIRAS EFETIVAS PARA OS PACIENTES COM ESCLEROSE LATERAL AMIOTRÓFICA - ELAPOLÍTICAS PÚBLICAS. DOENÇAS RARAS. ESCLEROSE LATERAL AMIOTRÓFICA - ELA.PUBLIC POLICY. RARE DISEASES. AMIOTROPHIC LATERAL SCLEROSIS. The Federal Constitution is based on the principle of the dignity of the human person, contemplating the right to health and social welfare. However, the patients affected by Amyotrophic Lateral Sclerosis - ALS, rare, neurodegenerative and progressive disease, find obstacles to universal and necessary access. To review and propagate the reality faced by patients with ALS, such as physical and psychological challenges, as well as judicial and extrajudicial obstacles to the resolution of their demands, aiming at unfolding the patients' quality of life, are the objectives of this study, using as a methodology the bibliographic research. The recognized high vulnerability of patients with ALS and the State's obligation to provide public policies to assist them have been verified. The possibility of adopting specific and effective public policies in the area (fostering basic and applied research, spreading a general education, incorporating new technologies, procedures and medicines into the public health system, among others) is envisaged as an important tool in increasing quality of life (including the self- esteem of patients and their families, who, in most cases, are also their caregivers) of all actors involved in health care, in line with dignity of human person. A Constituição Federal fundamenta-se no princípio da dignidade da pessoa humana, contemplando o direito à saúde e ao bem-estar social. Entretanto, os pacientes acometidos pela Esclerose Lateral Amiotrófica - ELA, doença rara, neurodegenerativa e progressiva, encontram óbices ao acesso universal e necessário. Revisar e propagar a realidade enfrentada pelos pacientes com ELA, como os desafios físicos e psicológicos, assim como os entraves judiciais e extrajudiciais para a resolução das suas demandas, visando desdobramentos no incremento da qualidade de vida dos pacientes, configuram-se objetivos do presente trabalho, empregando-se como metodologia a pesquisa bibliográfica. Verificou-se a reconhecida elevada vulnerabilidade dos pacientes com ELA e a obrigação estatal de prover políticas públicas que os assistam. Vislumbra-se a possibilidade, com a adoção de políticas públicas específicas e efetivas na área (fomentando pesquisas básicas e aplicadas; difundindo uma educação generalizada; incorporando novas tecnologias, procedimentos e medicamentos no sistema de saúde público, entre outras) como importante ferramenta no incremento da qualidade de vida (aqui incluída a própria autoestima dos pacientes e dos seus familiares que, na maioria das vezes, são também os seus cuidadores) de todos os atores envolvidos com os cuidados em saúde, alinhando-se aos princípios constitucionais norteadores, especialmente a dignidade da pessoa humana. Editora JRG2018-12-20info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionArtigo avaliado pelos Paresapplication/pdfhttp://revistajrg.com/index.php/jrg/article/view/20JRG Journal of Academic Studies; Vol. 1 No. 2 (2018): Revista JRG de Estudos Acadêmicos; 54-68JRG Journal of Academic Studies ; Vol. 1 Núm. 2 (2018): Revista JRG de Estudos Acadêmicos; 54-68JRG Journal of Academic Studies; V. 1 N. 2 (2018): Revista JRG de Estudos Acadêmicos; 54-68Revista JRG de Estudos Acadêmicos ; v. 1 n. 2 (2018): Revista JRG de Estudos Acadêmicos; 54-682595-1661reponame:Revista JRG de Estudos Acadêmicosinstname:Editora JRGinstacron:JRGporhttp://revistajrg.com/index.php/jrg/article/view/20/26http://revistajrg.com/index.php/jrg/article/view/20/27https://creativecommons.org/licenses/by/4.0info:eu-repo/semantics/openAccessRegis, Arthur H. P. Gonçalves, Jonas Rodrigo Siqueira, Marcus Vinicius Barbosa 2020-12-16T02:12:10Zoai:ojs2.revistajrg.com:article/20Revistahttp://revistajrg.com/index.php/jrgPRIhttp://revistajrg.com/index.php/jrg/oaiprofessorjonas@gmail.com||2595-16612595-1661opendoar:2020-12-16T02:12:10Revista JRG de Estudos Acadêmicos - Editora JRGfalse |
dc.title.none.fl_str_mv |
OF THE NEED FOR EFFECTIVE BRAZILIAN PUBLIC POLICIES FOR PATIENTS WITH AMIOTROPHIC LATERAL SCLEROSIS - ALS DA NECESSIDADE DE POLÍTICAS PÚBLICAS BRASILEIRAS EFETIVAS PARA OS PACIENTES COM ESCLEROSE LATERAL AMIOTRÓFICA - ELA |
title |
OF THE NEED FOR EFFECTIVE BRAZILIAN PUBLIC POLICIES FOR PATIENTS WITH AMIOTROPHIC LATERAL SCLEROSIS - ALS |
spellingShingle |
OF THE NEED FOR EFFECTIVE BRAZILIAN PUBLIC POLICIES FOR PATIENTS WITH AMIOTROPHIC LATERAL SCLEROSIS - ALS Regis, Arthur H. P. POLÍTICAS PÚBLICAS. DOENÇAS RARAS. ESCLEROSE LATERAL AMIOTRÓFICA - ELA. PUBLIC POLICY. RARE DISEASES. AMIOTROPHIC LATERAL SCLEROSIS. |
title_short |
OF THE NEED FOR EFFECTIVE BRAZILIAN PUBLIC POLICIES FOR PATIENTS WITH AMIOTROPHIC LATERAL SCLEROSIS - ALS |
title_full |
OF THE NEED FOR EFFECTIVE BRAZILIAN PUBLIC POLICIES FOR PATIENTS WITH AMIOTROPHIC LATERAL SCLEROSIS - ALS |
title_fullStr |
OF THE NEED FOR EFFECTIVE BRAZILIAN PUBLIC POLICIES FOR PATIENTS WITH AMIOTROPHIC LATERAL SCLEROSIS - ALS |
title_full_unstemmed |
OF THE NEED FOR EFFECTIVE BRAZILIAN PUBLIC POLICIES FOR PATIENTS WITH AMIOTROPHIC LATERAL SCLEROSIS - ALS |
title_sort |
OF THE NEED FOR EFFECTIVE BRAZILIAN PUBLIC POLICIES FOR PATIENTS WITH AMIOTROPHIC LATERAL SCLEROSIS - ALS |
author |
Regis, Arthur H. P. |
author_facet |
Regis, Arthur H. P. Gonçalves, Jonas Rodrigo Siqueira, Marcus Vinicius Barbosa |
author_role |
author |
author2 |
Gonçalves, Jonas Rodrigo Siqueira, Marcus Vinicius Barbosa |
author2_role |
author author |
dc.contributor.author.fl_str_mv |
Regis, Arthur H. P. Gonçalves, Jonas Rodrigo Siqueira, Marcus Vinicius Barbosa |
dc.subject.por.fl_str_mv |
POLÍTICAS PÚBLICAS. DOENÇAS RARAS. ESCLEROSE LATERAL AMIOTRÓFICA - ELA. PUBLIC POLICY. RARE DISEASES. AMIOTROPHIC LATERAL SCLEROSIS. |
topic |
POLÍTICAS PÚBLICAS. DOENÇAS RARAS. ESCLEROSE LATERAL AMIOTRÓFICA - ELA. PUBLIC POLICY. RARE DISEASES. AMIOTROPHIC LATERAL SCLEROSIS. |
description |
The Federal Constitution is based on the principle of the dignity of the human person, contemplating the right to health and social welfare. However, the patients affected by Amyotrophic Lateral Sclerosis - ALS, rare, neurodegenerative and progressive disease, find obstacles to universal and necessary access. To review and propagate the reality faced by patients with ALS, such as physical and psychological challenges, as well as judicial and extrajudicial obstacles to the resolution of their demands, aiming at unfolding the patients' quality of life, are the objectives of this study, using as a methodology the bibliographic research. The recognized high vulnerability of patients with ALS and the State's obligation to provide public policies to assist them have been verified. The possibility of adopting specific and effective public policies in the area (fostering basic and applied research, spreading a general education, incorporating new technologies, procedures and medicines into the public health system, among others) is envisaged as an important tool in increasing quality of life (including the self- esteem of patients and their families, who, in most cases, are also their caregivers) of all actors involved in health care, in line with dignity of human person. |
publishDate |
2018 |
dc.date.none.fl_str_mv |
2018-12-20 |
dc.type.driver.fl_str_mv |
info:eu-repo/semantics/article info:eu-repo/semantics/publishedVersion Artigo avaliado pelos Pares |
format |
article |
status_str |
publishedVersion |
dc.identifier.uri.fl_str_mv |
http://revistajrg.com/index.php/jrg/article/view/20 |
url |
http://revistajrg.com/index.php/jrg/article/view/20 |
dc.language.iso.fl_str_mv |
por |
language |
por |
dc.relation.none.fl_str_mv |
http://revistajrg.com/index.php/jrg/article/view/20/26 http://revistajrg.com/index.php/jrg/article/view/20/27 |
dc.rights.driver.fl_str_mv |
https://creativecommons.org/licenses/by/4.0 info:eu-repo/semantics/openAccess |
rights_invalid_str_mv |
https://creativecommons.org/licenses/by/4.0 |
eu_rights_str_mv |
openAccess |
dc.format.none.fl_str_mv |
application/pdf |
dc.publisher.none.fl_str_mv |
Editora JRG |
publisher.none.fl_str_mv |
Editora JRG |
dc.source.none.fl_str_mv |
JRG Journal of Academic Studies; Vol. 1 No. 2 (2018): Revista JRG de Estudos Acadêmicos; 54-68 JRG Journal of Academic Studies ; Vol. 1 Núm. 2 (2018): Revista JRG de Estudos Acadêmicos; 54-68 JRG Journal of Academic Studies; V. 1 N. 2 (2018): Revista JRG de Estudos Acadêmicos; 54-68 Revista JRG de Estudos Acadêmicos ; v. 1 n. 2 (2018): Revista JRG de Estudos Acadêmicos; 54-68 2595-1661 reponame:Revista JRG de Estudos Acadêmicos instname:Editora JRG instacron:JRG |
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Editora JRG |
instacron_str |
JRG |
institution |
JRG |
reponame_str |
Revista JRG de Estudos Acadêmicos |
collection |
Revista JRG de Estudos Acadêmicos |
repository.name.fl_str_mv |
Revista JRG de Estudos Acadêmicos - Editora JRG |
repository.mail.fl_str_mv |
professorjonas@gmail.com|| |
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1797068983457808384 |