Banca de QUALIFICAÇÃO: HEYTOR DE QUEIROZ MARQUES
Uma banca de QUALIFICAÇÃO de DOUTORADO foi cadastrada pelo programa.STUDENT : HEYTOR DE QUEIROZ MARQUES
DATE: 16/06/2023
TIME: 09:00
LOCAL: Virtual
TITLE:
Following the path of public policies for people with rare diseases
KEY WORDS:
State; Public Policies; Anthropology of Health ; biosociality, Rare Diseases.
PAGES: 129
BIG AREA: Ciências Humanas
AREA: Antropologia
SUMMARY:
I realized in research that one of the main demands of the group of people with rare diseases was the lack of public policies. Added to this lack of assistance, there is an eminent concern about government policies since the year 2016, as a neoliberal idea instituted with the public field was implemented. The aim of this paper would be to understand how public policies for rare disease patients are managed and developed foreseeing the national policy instituted in 2014, considering the approach of right-wing neoliberal political groups with rare disease patients' groups, represented by some characters. I will follow methodologically in two ways (online and offline), due to the need to do research during the COVID-19 pandemic. In the first, I will conduct a virtual modality research, in which I will identify new political actors that have some representativeness/relevance in the rare disease debate, building a map articulating the respective actions of these actors. The second methodological route starts from an ethnographic entry in a face-to-face manner in the state of Paraíba, to meet and interview political agents, associations, family members, and health professionals. In addition, I intend to follow health care devices for people with rare diseases in Campina Grande and João Pessoa, two large cities in the Northeastern state of Paraíba. Therefore, I intend to develop a research with online and offline interface, exploring the world of public policies for rare diseases and party politics in the state of Paraíba and the policies installed homogeneously in Brazil.
COMMITTEE MEMBERS:
Presidente - 1358748 - CARLOS GUILHERME OCTAVIANO DO VALLE
Interna - 1360691 - RITA DE CASSIA MARIA NEVES
Interna - 1691014 - ROZELI MARIA PORTO
Externa à Instituição - EDNALVA MACIEL NEVES - UFPB