¿Ha garantizado el Estado brasileño el derecho humano a una alimentación adecuada para las personas celíacas?

Autores/as

DOI:

https://doi.org/10.33448/rsd-v11i9.31742

Palabras clave:

Enfermedad celíaca; Derecho Humano a Una Alimentación Adecuada; Legislación.

Resumen

Introducción: Al asumir la alimentación adecuada como un derecho social, el Estado brasileño se convirtió en portador del deber de respetar, proveer, promover y proteger el Derecho Humano a la Alimentación Adecuada (HRAF) para todos los brasileños, incluidos los celíacos. Por tanto, es fundamental que el Estado instituya un aparato normativo compatible con las necesidades de la población celíaca, garantizando el cumplimiento de sus derechos. Objetivo: evaluar si la legislación vigente en Brasil responde a las demandas de las personas celíacas. Métodos: se adoptó el análisis de documentos según la metodología propuesta por Pimentel. El conjunto de documentos analizados está compuesto por todas las publicaciones encontradas que expresan las demandas de los celíacos, incluyendo: artículos, manuales y cartas de denuncia de órganos representativos. Resultados: Se constató la incipiencia de los instrumentos legales, agravada por el hecho de que una parte importante de las demandas de la población celíaca aún no ha sido cubierta por la normativa vigente. La legislación vigente expresa la existencia de iniciativas específicas en algunos estados y municipios brasileños, que no cubren todo el territorio nacional. Esta situación no cumple con el principio de universalidad que rige la HRAF, comprometiendo la exigencia de cumplimiento y reparación por parte de los organismos públicos para la población celíaca. Conclusión: debido al carácter puntual e incipiente del aparato legal brasileño, sigue siendo predominantemente responsabilidad de la sociedad civil, individualmente o a través de asociaciones representativas, iniciativas que garantizan la realización del Derecho Humano a la Alimentación Adecuada para celíacos.

Citas

Alencar, M. L., Ortiz- Agostinho CL, Nishitokukado I, Damião, A. O. M. C., Abrantes-Lemos, C. P., Leite, A. Z. A., Brito, T., Fischer, D. A. C., Silva, M. E. R., Giannella-Neto, D. & SipahiIet, A. M. (2012). Prevalence of celiac disease among blood donors in São Paulo – the most populated city in Brazil. Clinic, 67 (9):1013-1018.

Avritzer, L. (2016). Democracy in Brazil impasses. Civilização Brasileira, 1-154.

Brazilian Association for Nutrition and Human Rights. (2007). Training Course on Human Right and Adequate Food - Module I: Food and Nutrition Security (SAN) and the Human Right to Adequate Food. Available in: www.direitohumanoalimentacao.org.

Brazilian National Federation of Celiac Associations (FENACELBRA). (2014). Letter to candidates for the presidency of the republic, august 2010, http://www.fenacelbra.com.br/fenacelbra/carta-as-autoridades/; 2014 [Accessed in April 2014].

Brazilian National Federation of Celiac Associations (FENACELBRA). (2009). Open letter to the Brazil’s mayors. Brasil: Autor.

Brazilian National Federation of Celiac Associations (FENACELBRA). (2012). Fortaleza letter. Brasil: Autor.

Brazilian National Federation of Celiac Associations (FENACELBRA). (2010). Letter to the Republic Presidency Candidates. Brasil: Autor. http://www.fenacelbra.com.br/fenacelbra/carta-as-autoridades/ [Accessed in July 2018].

Brazilian National Federation of Celiac Associations (FENALCEBRA). (2015). Millions have celiac disease, but the diagnosis is difficult. Available in: http://www.fenacelbra.com.br/fenacelbra/blog/2015/11/28/milhoes-tem-doenca-celiaca-mas-o-diagnostico-e-dificil/ 2018.

Burity, V., Cruz, L., Franceschini, T. (2011). Demandability: Mechanisms to claim the human right to adequate food in Brazil. Food and Agriculture Organization of the United Nations (FAO). Available in: http://www.oda-alc.org/documentos/1340937012.pdf.

Canesqui, A. M. & Garcia, R. W. D. (2005). Anthropology and nutrition: a possible dialogue. Fiocruz, 304p.

Carvalho, M. C. V. S., Luz, M. T., Prado, S. D. (2011). Eating, feeding and nourishing: instrumental analytical categories in the field of scientific research. Cien Saude Colet, 16 (1): 155-164.

Cassol, C. A., Pellegrin, C. P., Wahys, M. L. C., Pires, M. M. S. & Nassar, S. M. (2007). Clinical profile of the celiacs association of Brazil members - regional of Santa Catarina (ACELBRA- SC). Arq Gastroenterol, 44(3):257-265.

Castilhos, A. C., Gonçalves, B. C., Macedo e Silva, M., Lanzoni, L. A., Metzger, L. R., Kotze, L. M. S. & Nisihara, R. M. (2015). Quality of life evaluation in celiac patients from Southern Brazil. Arq Gastroenterol, 52 (3):171-175.

Catassi C, Gatti S, Fasano A. (2014). The New Epidemiology of Celiac Disease. J Pediatr Gastroenterol Nutr, 59:S7–S9.

Cobos-Quevedo, O.J., Hernández-Hernández, G.A. & Remes-Troche, J.M. (2017). Transtornos relacionados ao glúten: visão geral atual. Med Int Méx, 33(4): 487-502.

Coeliac Australia. (2014). Coeliac Australia endorsement program. Austrália: Autor.

Crucinsky, J., Damião, J.J. & Castro, I. R. R. (2021). Fragilidades no cuidado em saúde às pessoas com desordens relacionadas ao glúten. Cadernos de Saúde Pública [online], 37(2): 1-12.

Escorel, S., Arouca, L.E. (2016). Democracy and participation: moving beyond dichotomies. Health Debate, 40:39-48.

Falcomer, A. L., Araújo, L. S., Farage, P., Monteiro, J.S., Nakano, E. Y., Zandonadi, R. P. (2018). Gluten contamination in food services and industry: A systematic review. Crit Rev Food Sci Nutr., 60(3):479-493.

Federación de Asociaciones de Celiacos de España. (2015). Certificaciones FACE sistema de licencia Europeo (ELS). Espanha: Autor.

Freeman, H.J. (2018). Papel da biópsia no diagnóstico e tratamento da doença celíaca em adultos. Gastroenterol Hepatol Bed Bench,11(3): 191-6.

Gandolfi, L., Pratesi, R., Cordoba, J. C., Tauil, T. L., Gasparin, M & Catassi, C. (2000). Prevalence of celiac disease among blood donors in Brazil. Am J Gastroenterol, 95 (3):689-692.

Health Ministry. (2009). National Policy of Permanent Education in Health. Ministry of Health, Secretariat of Labor Management and Health Education, Brasíl: Autor.

Korinth, A., Schiess, S., Westenhoefer, J. (2010). Eating behavior and eating disorders in students of nutrition sciences. Public Health Nutr, 13:32-37.

Kotze, L. M. D. S. (2009). Celiac disease in Brazilian patients: associations, complications and causes of death forty years of clinical experience. Arq Gastroenterol, 46 (4):261-269.

Labrada, O. B., Reyes, C. V., Sánchez, H. N. S., & Otero, J. A. S.. (2020). Enfermedad Celíaca en el adulto. Un reto en el nuevo milenio. Multimed, 24(4):949-968.

Lavalle, A. G., Vera, E. I. (2011). The conceptual web of democratic critique: from participation to representation and accountability. Lua Nova, 84:95-139.

Law n º 11346, from September 15, 2006. (2006). It provides for the creation of the National System of Food and Nutrition Security - SISAN with a view to ensuring the human right to adequate food and other measures. Brasilia, DF. Available in: http://www.planalto.gov.br/ccivil_03/_ato2004-2006/2006/lei/l11346.htm#:~:text=Lei%20n%C2%BA%2011.346&text=LEI%20N%C2%BA%2011.346%2C%20DE%2015%20DE%20SETEMBRO%20DE%202006.&text=Cria%20o%20Sistema%20Nacional%20de,adequada%20e%20d%C3%A1%20outras%20provid%C3%AAncias.

Law nº 1.784, from March 20, 2003. (2003). Grants financial assistance and makes other arrangements. Biguaçu, SC.

Law nº 10.674, from may 16, 2003. (2003). It requires marketed food products to report on the presence of gluten as a preventive and control measure for celiac disease. Brasília, DF. Available in: https://www.camara.leg.br/proposicoesWeb/prop_mostrarintegra?codteor=440852&filename=Legislacao.

Law nº 12.982, from May 28, 2014. (2014). Amends Law nº 11.947, from 16 June 2009, to determine the provision of adequate school feeding to students with a state or a specific health condition. Union Official Diary.

Law nº 13.349, from May 15, 2002. (2002). Establishes, within the municipality of São Paulo, the celiac day, to be celebrated annually on August 31. São Paulo, SP. Available in: http://legislacao.prefeitura.sp.gov.br/leis/lei-13349-de-15-de-maio-de-2002/detalhe.

Law nº 15.447, from January 17, 2011. (2011). Provides for the obligation to inform consumers about the ingredients used in the preparation of foods provided by restaurants, bars, cafeterias, bakeries, pastry shops, rotisseries and the ones that commercialize and deliver at home ready-to-eat foods, established in the State of Santa Catarina, and adopts other measures. Santa Catarina. Available in: https://www.legisweb.com.br/legislacao/?id=163718.

Law nº 16.085, from April 17, 2009. (2009). Provides that the establishments that it specifies, which operate within the schools of the private school chain, are obliged to disclose information that it mentions, regarding the presence and discrimination of quantities in their nutritional tables of marketed foods. Paraná. Available in: https://leisestaduais.com.br/pr/lei-ordinaria-n-16085-2009-parana-dispoe-que-os-estabelecimentos-que-especifica-que-funcionam-dentro-das-escolas-da-rede-particular-de-ensino-ficam-obrigados-a-divulgarem-informacoes-que-menciona-referentes-a-presenca-e-a-discriminacao-de-quantidades-em-suas-tabelas-nutricionais-dos-alimentos-comercializados.

Law nº 17.254, from September 15, 2006. (2006). Authorizes the executive branch to maintain differentiated diet for children with diabetes, celiac disease and lactose intolerance in school meals at municipal schools and day care centers. Recife, PE. Available in: https://cm-recife.jusbrasil.com.br/legislacao/256046/lei-17254-06.

Law nº 4.573, from January 22, 2008. (2008). Determines differentiated meals for students of the municipal network with diabetes, hypoglycemia and celiacs. Cariacica, ES. Available in: http://www3.camaracariacica.es.gov.br/Arquivo/Documents/legislacao/html/L45732008.html.

Law nº 4.840, from September 5, 2006. (2006). Institutes, in Rio de Janeiro state, the Assistance Program for Celiac Disease Patients. Rio de janeiro, RJ. Available in: https://gov-rj.jusbrasil.com.br/legislacao/88137/lei-4840-06.

Law nº 6.545, from august 25, 2004. (2004). Determines the use of special feeding in municipal schools. Blumenau, SC. Available in: https://leismunicipais.com.br/a/sc/b/blumenau/lei-ordinaria/2004/654/6545/lei-ordinaria-n-6545-2004-determina-o-uso-de-alimentacao-especial-nas-escolas-municipais.

Law nº 7.010, from July 24, 2007. (2007). Institutes the celiac municipal day within the municipality of Vitória. Vitória, ES. Available in: https://camara-municipal-da-vitoria.jusbrasil.com.br/legislacao/570797/lei-7013-07.

Law nº 7.013, from July 23, 2007. (2007). Authorizes to establish, in the municipality of Vitória, the Assistance Program for Celiac Disease Patients. Vitória, ES. Available in: https://camara-municipal-da-vitoria.jusbrasil.com.br/legislacao/570797/lei-7013-07.

Law nº 9.012, from October 31, 2012. (2012). Institutes the municipal policy to support people with celiac disease. Florianópolis, SC. Available in: https://leismunicipais.com.br/a/sc/f/florianopolis/lei-ordinaria/2012/902/9022/lei-ordinaria-n-9022-2012-dispoe-sobre-a-provisao-de-beneficios-de-carater-eventual-auxilio-natalidade-no-ambito-da-politica-publica-de-assistencia-social.

Law nº 9.788, from January 18, 2012. (2012). It obliges the establishments that commercialize food products to be disposed in a unique and specific place, with special emphasis on products destined to celiac, diabetic and lactose intolerant individuals and provides other measures. Espírito Santo, ES. Disponível: https://www.legisweb.com.br/legislacao/?id=127490.

Law nº 971, from December 20, 2006. (2006). It provides for the obligatory distribution of differentiated meals for diabetic, hypoglycemic and celiac patients enrolled in municipal schools. São José dos Pinhais, SP. Available in: https://leismunicipais.com.br/a/pr/s/sao-jose-dos-pinhais/lei-ordinaria/2006/98/971/lei-ordinaria-n-971-2006-dispoe-sobre-a-obrigatoriedade-da-distribuicao-de-merenda-diferenciada-para-alunos-diabeticos-hipoglicemicos-e-celiacos-matriculados-nas-escolas-municipais.

Luchmann, L. H. H. (2011). Associations, participation and representation: combinations and tensions. New Moon, 84:353-364.

Ludvigsson, J. F., Bai, J. C., Biagi, F., Card, T. R., Ciacci, C., Ciclitira, P.J., Green, P. H. R., Hadjivassiliou, M., Holdoway, A., Heel, D. A. V., Kaukinen, K., Leffler, D. A., Leonard, J. N., Lundin, K. E. A., McGough, N., Davidson, M., Murray, J. A., Swift, G. L., Walker, M. M., Zingone, F. & Sanders, D. S. (2014). Diagnosis and management of adult celiac disease: guidelines from the British society of gastroenterology. Gut, 10:1-20.

Melo, S. B., Fernandes, M. L., Peres, L. C., Troncon, L. E. A., Galvão, L. C. (2006). Prevalence and demographic characteristics of celiac disease among blood donors in Ribeirão Preto, state of São Paulo, Brazil. Dig Dis Science, 51 (5):1020-1025.

Moscoso, F. & Quera, R. (2016). Celiac disease. Rev Med Chile, 144 (2): 211-21.

Oliveira, R. P., Sdepanian, V.L., Barreto, J. A., Cortez, A. J. P., Carvalho, F. O., Bordin, J. O., Soares, M. A. C., Patrício, F. R. S., Kawakami, E., Morais, M. B. & Fagundes-Neto, U. (2007). High prevalence of celiac disease in Brazilian blood donor volunteers based on screening by iga antissue transglutaminase antibody. Eur J Gastroenterol Hepatol, 19 (1):43-49.

Ordinance MS/SAS nº 307, from September 17, 2009. (2009). Clinical Protocol and Therapeutic Guidelines for Celiac Disease. Brasília, DF. Available in: http://conselho.saude.gov.br/Web_comissoes/cian/protocolo_celiaco.html.

Ordinance nº 1.149, from November 11, 2015. (2015). Approves the Clinical Protocol and Therapeutic Guidelines for Celiac Disease. Brasília, DF. Available in: https://bvsms.saude.gov.br/bvs/saudelegis/sas/2015/prt1149_11_11_2015.html.

Ordinance nº 1.996, from August 20, 2007. (2007). Provides guidelines for the implementation of the National Policy on Continuing Education in Health. Brasília, DF. Available in: https://bvsms.saude.gov.br/bvs/saudelegis/gm/2007/prt1996_20_08_2007.html.

Ordinance nº 193, from December 5, 2006. (2006). Changes the nutritional parameters of the Worker's Feeding Program - PAT. Brasília, DF. Available in: http://editorartm.com.br/portaria-n-193-de-05-de-dezembro-de-2006/.

Parzanese, I., Qehajaj, D., Patrinicola, F., Aralica, M., ChirivaInternati, M., Stifter, S., Elli, L. & Grizzi, F. (2017). Doença celíaca: da fisiopatologia ao tratamento. World J Gastrointest Pathophysiol, 8(2): 27-38.

Paula, F. D. A., Cruncinsky, J. & Benati R. (2014). Health care fragilities of celiac people in the Unified Health System (SUS): the perspective of the use. Demetra, 9 (supl1):311-328.

Pereira, M. A. G., Ortiz- Agostinho, C. L., Nishitokukado, I., Sato, M., Damião, A. O. M. C., Alencar, M. L., Abrantes-Lemos, C. P., Cançado, E. L. R., Brito, T., Ioshii, S. O., Valarini, S. B. M. & Sipahi, A. M. (2006). Prevalence of celiac disease in a urban area of Brazil with predominantly european ancestry. Gastroenterol World Journal, 12 (40): 6546-6550.

Pimentel, A. (2001). The method of documental analysis: the use for a historiogrphycal research. Cad. Pesqui, 114:179-195.

Pinto, C.A., Souza, B. R., Peixoto, J. S. G. & Ishizawa, T. A. (2020) Rotulagem para alergênicos: uma avaliação dos rótulos comercializados com presença ou ausência de glúten e seus riscos inerentes à saúde dos celíacos no Brasil. Research, Society and Development, 9 (6): 1-25.

Resolution nº 26, from june 17, 2013. (2013). Provides on the attendance of school feeding to students of basic education under the National School Feeding Program - PNAE. Brasília, DF.

Resolution nº 460, from November 8, 2012. (2012). To approve the creation of an Intersectoral Technical Committee for Integral Attention to Celiac Person. Union Official Diary.

Resolution RDC nº 26, from July 2, 2015. (2015). Provides for requirements for mandatory labeling of key foods that cause food allergies. Brasília, DF. Available: https://bvsms.saude.gov.br/bvs/saudelegis/anvisa/2015/rdc0026_26_06_2015.pdf.

Rubio-Tapia, A., Hill, I. D., Kelly, C. P., Calderwood, A. H. & Murray, J. A. (2013). AGG clinical guidelines: diagnosis and management of celiac disease. Am J Gastroenterol, 108 (5):656-676.

Sapone, A., Bai, J. C., Ciacci, C., Dolinsek, J., Green, P. H. R., Hadjivassiliou, M., Kaukinen, K., Rostami, K., Sanders, D. S., Schumann, M., Ullrich, R., Villalta, D., Volta, U., Catassi, C. & Fasano, A. (2012). Spectrum of gluten disorders: consensus on new nomenclature and classification. BMC Med, 10 (13):1-13.

Siqueira, R. L., Cotta, R. M, Soares, J. B. (2015). Social Participation in Health: know to promote. Viçosa: MG, UFV.

The Food and Agriculture Organization of the United Nations (FAO). (2013). Brazilian Action for Nutrition and Human Rights. The human right to adequate food and the national nutritional and food security system. Brasília: Marília Leão: Autor.

The Food and Agriculture Organization of the United Nations (FAO). (2007). The collectability of the human right to adequate food. Brazilian Action for Nutrition and Human Rights. Brasília, DF.

United Nations Organization. (2002). General Comment nº 12 – The Human Right to Adequate Food (art. 11) 1999. In: Valente, F. L. (org.), Human right to nourishment: challenges and achievements. São Paulo, SP: Cortez.

Urbinati, N. (2006). What makes the representation democratic? New Moon. Lua Nova, 67: 191-228.

Valente, F. L. S., Beghin, N. (2006). Human Right to Adequate Food and the Brazilian Experience Realization: subsidies for replicability. ABRANDH, Brasília, DF.

Zhu, J., Mulder, C.J. & Dieleman, L.A. (2019). Celiac Disease: Against the Grain in Gastroenterology. J Canadian Association Gastroent, 2(4): 161-9.

Descargas

Publicado

12/07/2022

Cómo citar

SIQUEIRA, R. L. de; FREITAS, D. M. de O. .; FERNANDINO , S. S. G. .; CRUZ, P. S.; OLIVEIRA, C. B. de .; FRAGA, L. N. .; CARVALHO, I. M. M. de . ¿Ha garantizado el Estado brasileño el derecho humano a una alimentación adecuada para las personas celíacas? . Research, Society and Development, [S. l.], v. 11, n. 9, p. e36111931742, 2022. DOI: 10.33448/rsd-v11i9.31742. Disponível em: https://rsdjournal.org/index.php/rsd/article/view/31742. Acesso em: 22 nov. 2024.

Número

Sección

Ciencias de la salud