Garcia Ionara Ferreira da Silva, Hennington Élida Azevedo
Instituto Nacional de Infectologia Evandro Chagas, Fundação Oswaldo Cruz, Rio de Janeiro, Brasil.
Escola Nacional de Saúde Pública Sergio Arouca, Fundação Oswaldo Cruz, Rio de Janeiro, Brasil.
Cad Saude Publica. 2019 Nov 11;35(11):e00005419. doi: 10.1590/0102-311X00005419. eCollection 2019.
HTLV is a virus that affects human T-cells. Brazil is the country of the world with the largest absolute number of HTLV cases. Estimates by the Ministry of Health point to 700,000 to 2 million infected Brazilians. The majority are asymptomatic carriers, but some persons may develop degenerative neurological conditions such as tropical spastic paraparesis, in addition to leukemia and lymphoma. The forms of transmission and clinical manifestations such as progressive motor incapacity, genitourinary disorders, in addition to restriction of maternal breastfeeding, impact daily life and can lead to social discrimination and stigma. The stigma denotes violation of social norms and reinforces prejudice and inequalities. This article aims to discuss the concept of stigma and its repercussions on persons living with HTLV. The discussion is based on a literature review on the theme and the authors' experience with care for persons affected by the infection and illness. The study found that both HTLV carrier status and HTLV-related illness can be stigmatizing for individuals, who feel inferior for being infected with a potentially serious and even fatal disease, although incompletely understood and loaded with derogatory stereotypes. This situation can have negative repercussions on access to health services, treatment adherence, and pursuit of rights. Public policies should help mitigate such stigmatization, ensuring the rights of individuals in a situation of vulnerability due to HTLV in order from them to live as protagonists in the exercise of their civil rights.
人类嗜T淋巴细胞病毒（HTLV）是一种影响人类T细胞的病毒。巴西是世界上HTLV病例绝对数量最多的国家。卫生部的估计表明，巴西有70万至200万人感染了HTLV。大多数是无症状携带者，但有些人可能会患上退行性神经疾病，如热带痉挛性截瘫，此外还会患白血病和淋巴瘤。其传播形式以及诸如进行性运动能力丧失、泌尿生殖系统疾病等临床表现，再加上对母乳喂养的限制，都会影响日常生活，并可能导致社会歧视和污名化。污名意味着违反社会规范，并加剧偏见和不平等。本文旨在探讨污名的概念及其对HTLV感染者的影响。该讨论基于对该主题的文献综述以及作者对感染和患病者的护理经验。研究发现，HTLV携带者身份和与HTLV相关的疾病对个人来说都可能具有污名化作用，他们因感染一种潜在严重甚至致命的疾病而感到自卑，尽管这种疾病尚未被完全了解且背负着贬义的刻板印象。这种情况可能会对获得医疗服务、治疗依从性和权利追求产生负面影响。公共政策应有助于减轻这种污名化，确保因HTLV而处于脆弱状况的个人的权利，以便他们能够作为公民权利行使的主角生活。
