OF THE NEED FOR EFFECTIVE BRAZILIAN PUBLIC POLICIES FOR PATIENTS WITH AMIOTROPHIC LATERAL SCLEROSIS - ALS

• Autor(a) principal: Regis, Arthur H. P.
• Data de Publicação: 2018
• Outros Autores: Gonçalves, Jonas Rodrigo, Siqueira, Marcus Vinicius Barbosa
• 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
• topic: POLÍTICAS 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.