“A person has already arrived at the premises and asked me for a self-test. She then wanted to go and do it in the forest, to be sure not to be seen.recalls Jean-Paul Dada in a semi-amused tone. Through this anecdote, the coordinator of the Aides association in Maripasoula (Haut-Maroni, French Guiana) recounts a glaring reality observed everywhere in the region: the culture of silence around HIV.
Guyana is the French territory most affected by the epidemic. In 2023, if, on a national scale, there were an average of 80 HIV discoveries per 1 million inhabitants, this rate was seven times higher in the South American department. There, the disease affects both women and men, and heterosexual people are the most represented. In this region of the world exposed to precariousness, to difficulties in accessing care – in particular for people of foreign origin – and where the multiplicity of sexual partners is rather ordinary, fighting against the taboo which persists around HIV constitutes the heart of the actions carried out by Aides in Guyana.
“Everyone knows each other”
“The lack of knowledge around HIV and hepatitis is wreaking havoc here”confirms Jean-Paul Dada, who grew up in this town accessible only by canoe or plane. He continues: “In Maripasoula, everyone knows each other. However, whether they are concerned or not, people talk about it so little that the majority of them are unaware that the disease is not transmitted if the infected person is properly treated.”
The door of the small prefab which adjoins the Maripasoula dispensary has just been ajar. The temples still damp from the crushing heat outside, the drawn face of a forty-year-old appears shyly. “Hey !” (“hi”, in Portuguese), warmly calls out Eliziane Cardoso, one of the three mediators of the association. She invites the one we will call Paulo (1) to sit on one of the two colorful poufs placed in front of a coffee table filled with sweet drinks and pastries. A Brazilian gold miner who came specially from the Surinamese side where he currently lives, on the other side of the Maroni River, Paulo is one of the sixty people living with HIV that the Aides Maripasoula team supports.
“I didn’t know anything about it. It took me years to understand that it was important to take treatment every day, for my health and that of others.”explains the man. Like every month for a week, the association is holding its office at the local hospital at the end of November in order to receive people who have come for follow-up consultations with Doctor Mathilde Boutrou. The infectious disease specialist supports around 80 patients with HIV. Like Paulo, three quarters of them are also assisted by Aides. For the practitioner who specially came from Cayenne for the week, the association constitutes “a necessary interface in the care pathway”.
With a coffee in his hands, Paulo confides in Eliziane, also Brazilian, in her native language. Before his consultation, the gold miner discusses the latest difficulties he has faced in the exercise of his precarious and clandestine profession. “Most of my colleagues do not protect themselves and do not go to consultations”he regrets. In this sector of illegal gold mining which plagues the Haut-Maroni region on both sides of the river, gold mining workers regularly use the services of sex workers. “So I talk about it as much as possible, I bring condoms to the sites,” Continue Paul.
“I was afraid that the illness would show on my face”
Bordering the west of Guyana, the Maroni River is an extremely porous border where Guyanese (mostly from Amerindian and Aluku communities), migrants from Haiti or the Dominican Republic and Brazilian gold miners rub shoulders on a daily basis. With a Wayana Native American mother and a Brazilian father, Vitoria (1) grew up a few kilometers from Maripasoula, alternately in Suriname and French Guiana. “I was born with HIV, but I learned of my HIV status by chance, before surgery, at 28 years old. My mother hid it from me all my life, remembers the woman who is now 49 years old. From that moment on, I fell into depression. I was afraid the illness would show on my face.” It was by working with Aides that she gradually freed herself from her complexes and the prejudices she had about AIDS. “Thanks to them, I was able to meet people who are leading normal lives with HIV with the help of treatment. I believed, for example, that I would never be able to have children. And seven months ago I gave birth to a baby“, she rejoices, her eyes shining. Now a volunteer for the association, Vitoria in turn supports people affected by the virus “to give them confidence”.
Multilingual, this artisan jeweler meets a requirement on which Aides bases the effectiveness of its actions in Maripasoula as elsewhere in Guyana: “All employees, and if possible volunteers, speak at least one local language, because HIV affects all communitiesexplains Jean-Paul Dada, himself from the aluku community. Our next recruitment to complete the team will therefore be of Wayana Native American origin.”
Of Peruvian origin and resident of Maripasoula, Liz Napuche has been a volunteer at Aides for a year. His mastery of Spanish allows him to “better convey information”, and it is for her an inexhaustible source of satisfaction. “Each action is an additional stone to make the taboo disappear”says the 29-year-old young woman who works in particular with sex workers, most of whom come from Spanish-speaking Caribbean countries.
In Guyana, like Paulo and Vitoria, 97% of patients undergoing HIV treatment live “like everyone else” and their disease is undetectable and untransmissible. Yet their desire to remain anonymous reveals the continuing difficulty of accepting the virus in local society. A social complex linked to a global ignorance of the disease which, for a long time, generated heavy discrimination, and even more so in areas with a strong community character like Maripasoula.
“The condom is not yet common practice”testifies an Aluku resident who, having multiple partners, nevertheless ensures that he has one every time he has sex. “In Maripasoula, people are in denial”in turn regrets Yamo Sao, preparer in the only pharmacy in the town. Since the Aides branch opened there at the end of 2016 and prevention missions have multiplied, on average between 150 and 200 condoms are distributed per day.
Screenings have also increased there since 2017, observes Jean-Paul Dada, who arrived at Aides precisely that year: “Here, many people see our branch as a way to avoid going to the dispensary and therefore risk meeting people they know… But at least they are getting tested.”
“The feeling of having won a small battle”
Lack of awareness of the risks, lack of screening, even disruption of care, the consequences of the taboo around HIV are multiple and scattered throughout Haut-Maroni. So, the Maripasoula team, employees and volunteers, regularly organize actions to meet the public. These “outside the walls” missions aim to educate populations about the disease, but also to provide individuals with protective equipment when it is not a question of self-screening tests. “What I like best is passing on the right information. I feel like I’ve won a little battle.”rejoices Glenda Assakia, mediator and employee of the association.
But with the extreme drought that the Maroni has been experiencing for several months, several actions in the “gaps”, the villages lost in the forest, had to be canceled because the river level was too low. If they cannot organize themselves otherwise, some inhabitants of Haut-Maroni are, at present, unable to go to the premises to obtain condoms or to attend their consultation with the infectious disease specialist. .
That day, under the ambient darkness, a patient usually accompanied by Aides finally arrived at 2 p.m. at the Maripasoula dispensary, visibly exhausted but determined to honor her appointment with the doctor. Eliziane Cardoso is reassured to see her arrive: “Because of the drought, this gold miner’s wife arrived after five hours in the canoe when it usually only takes her two. She had been out of treatment for ten days… Although there is a dispensary twenty minutes from her home, she refuses to go there to avoid meeting acquaintances.” In Haut-Maroni, Aides activists are also impatiently awaiting the rainy season.
(1) First names have been changed.
Related News :