“Eu quero viver, esse vírus não vai me derrubar nunca”: as diferenças sociais na luta contra a AIDS

Avanços da medicina dão qualidade de vida inédita à pessoa com HIV, mas solução esbarra na vulnerabilidade, preconceito e falta de informação

Reportagem publicada em 30 de janeiro de 2018

HIV não é mais sentença de morte, mas qualidade de vida depende da situação socioeconômica e de ONGs como a SAPAB, especializada no cuidado com soropositivos em situação vulnerável (Ilustração: Kauã Rodrigues/JORNAL DOIS)

Por Lucas Zanetti

Em 2015, a Associação de Apoio à Pessoa com AIDS de Bauru (SAPAB) se viu numa situação difícil. A prefeitura cancelou o convênio que mantinha a instituição em funcionamento. Sem salário, apenas três funcionárias e uma voluntária ficaram no trabalho “por amor”, diz Josefa, chamada pelos moradores de Zefa, cuidadora e cozinheira da associação. Com um sorriso no rosto de quem trabalha há 10 anos com o que “aprendeu a amar”, Zefa conta que, às vezes, também “arrisca” como assistente social e psicóloga.

A cuidadora lembra que, para os funcionários que tinham condição de ficar, a decisão de manter a ONG foi imediata: “nós temos casa, mas e os outros? Abrir o portão olhar pra cima e pra baixo e não ter pra onde ir… Nós vamos ficar aqui e só vamos sair de mãos dadas”.

O convênio foi cancelado após a prefeitura recusar uma prestação de contas. Fatima Elizabeth, assistente social da SAPAB, que também “arrisca como cozinheira e motorista”, conta que desde então as coisas têm se complicado. “A gente não tinha salário. Aí tinha um evento e a diretoria dava um vale pra gente. Trabalhar sem receber pagamento é bem complicado”, lembra.

Fatima explica que no final de 2016 a situação estava encaminhada e a prefeitura retomaria o convênio, mas com a troca da gestão municipal com a posse do prefeito Clodoaldo Gazzetta (PSD), todo o processo foi revisto. “Passou todo ano de 2017 e agora estamos tentando resolver o problema no início de 2018”, afirma.

Eventos na SAPAB ajudam a instituição a arrecadar recursos e quebrar preconceito por meio da integração com a comunidade (Foto: Acervo/SAPAB)

Para quem se encontra na situação de enfrentar o HIV em situação de vulnerabilidade social e precisa de assistência social em Bauru, a SAPAB, localizada no Jaraguá, é uma das poucas alternativas. A casa tem a capacidade de oferecer atendimento integral a 12 pacientes, mas desde o cancelamento do convênio, seis leitos estão ocupados. A instituição vem se mantendo com eventos na comunidade, venda de pizza e pasteis. Também recebem doações e mantém parcerias com universidades. Caso o convênio com a prefeitura seja retomado, a casa voltaria a completar todos os leitos.

“HIV não tá escrito na testa”

Quase 3 mil pessoas vivem com HIV em Bauru, segundo dados do Ministério da Saúde. A disseminação do vírus começou na década de 80 nos Estados Unidos e a AIDS logo virou uma epidemia mundial. Mais de 35 milhões de pessoas morreram desde o surgimento da doença, segundo a Organização Mundial da Saúde (OMS).

No início, a “doença misteriosa” chamou a atenção dos médicos e alarmou o mundo por atacar o sistema imunológico de forma rápida, mortal e sem perspectiva de cura. Hoje, portar o HIV não é o mesmo que ter AIDS. “O vírus é o mesmo, o que mudou é que hoje temos um tratamento muito eficaz, com poucos efeitos colaterais e fácil de tomar. A tomada regular da medicação que vai fazer com que a pessoa vai ter uma qualidade de vida boa”, explica Maristela Oliveira, médica infectologista do Centro de Referência de Moléculas Infecciosas (CRMI).

Manchete do Notícias Populares, em 1983. A AIDS já nasce rodeada de preconceitos e tabus (Foto: Reprodução/Semana ON)

As políticas de combate ao HIV que oferecem qualidade de vida ao soropositivo ainda esbarram na questão socio-econômica. Pessoas em situação de vulnerabilidade podem não ter acesso aos medicamentos, cuidados e acompanhamento necessário para bloquear o avanço do vírus. De acordo com a OMS, mais da metade das mortes por AIDS ocorrem em países com alto índice de extrema pobreza no continente africano.

O Brasil é referência no tratamento da AIDS por ser um dos poucos países do mundo a oferecer a testagem, o medicamento profilático — que elimina o HIV caso o contágio tenha acontecido em até 72 horas — e o tratamento para quem já possui o vírus de forma gratuita pelo SUS. Ainda assim, entre os casos de HIV onde a escolaridade foi notificada, 78,5% não completaram o ensino básico, segundo o Ministério da Saúde.

A situação de vulnerabilidade e abandono familiar é o caso de todos os moradores que pedem apoio à SAPAB. Zefa conta que por um tempo, o grande problema era que os alguns dos pacientes atendidos tinham graves problemas com drogas. A maioria terminava na desistência da vaga. Fatima explica que isso ocorre porque “a pessoa nunca teve apoio, nunca teve carinho, não tem apoio familiar”. Ela lamenta, mas pontua que “não temos como obrigá-los a ficar. Aqui não é uma cadeia”.

A clara distinção de classes sociais também é notada por Zefa. “HIV não tá escrito na testa. Existem muitas pessoas com HIV e tão se consultando em consultório particular e ninguém sabe. A pessoa abafa o caso”, lembra contando o caso do empresário que descobriu ter HIV.

Cleisi é um exemplo que traz orgulho à instituição. Quando chegou à SABAP estava em uma cadeira de roda e usava fralda. “Eu quero viver, esse vírus não vai me derrubar nunca”, era esse o pensamento deu força para a recuperação. Hoje ela tem sua própria casa e está sempre na instituição para comer o almoço de Zefa. “De AIDS não se morre. Se você tomar o medicamento, não morre”, diz Cleisi.

Georgiana Braga-Orillard, diretora da Unaids Brasil, afirmou em entrevista à BBC que o preconceito, a falta de informação e a ausência do debate na mídia também são entraves para a conscientização da importância da prevenção, testagem e tratamento. O fato da doença ser sexualmente transmissível, ter criado alarde social em sua origem e ser associada à homossexualidade criaram tabus em relação ao problema.

“É preciso detalhes da situação de risco para avaliação do tipo de exposição, para indicar a melhor forma de tratamento. Essas informações precisam ser discutidas e levantadas. Não interessa quem foi, mas como aconteceu. Muitos não querem se expor”, explica Eliane Monteiro, enfermeira coordenadora do programa de Infecções Sexualmente Transmissíveis (IST) em Bauru.

O mesmo preconceito fez com que a SAPAB fosse chamada por um tempo de “casa da AIDS”. Zefa lembra que ainda hoje algumas pessoas se recusam a tomar água no lugar, ou ficam desconfortáveis ao sentar no sofá e que antigamente as pessoas atravessavam a rua para não passar na porta.

Atividades de fisioterapia realizadas em conjunto com a comunidade do Jaraguá (Vídeo: Acervo/SAPAB)

Para mudar esta realidade, a instituição passou a fazer trabalhos de integração com a comunidade, como fisioterapias conjuntas, atividades e eventos. “Agora temos que brigar para as pessoas não levarem as coisas embora”, diz Fátima, com orgulho.

 

Infográfico: Ana Carolina Moraes/JORNAL DOIS

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