July 16, 2016
Written by Nathalie Gautier, Communications and Fundraising Manager, AIDES
The Maroni River is fast and lively, tumbling between the border of Suriname and French Guiana in South America. The region is home to the Bushinengués who have lived there for two centuries. They fled slavery, took refuge in the forest, then settled near the river. The river is a way of life for the Bushinengués, providing food and a livelihood.
The area is peaceful and serene, but it’s also hyper-rural and home to a transient population with limited access to mainstream media, health, education and much more. People living by the river are susceptible to becoming isolated, forgotten by the rest of the world.
It’s tough to make ends meet and some are forced into prostitution. According to UNAIDS, migrant workers, including some 13,000 loggers and gold panners, pass through the region in search of an income. The combination of remoteness and transience means that HIV runs rampant. The prevalence of HIV is the highest in the country, with infection rates far above the national average. In fact, the area has one of the highest prevalence rates in the world, second only to sub-Saharan Africa. Among the factors that keep the epidemic at a high level is discrimination and stigma that prevents people from talking about their HIV status and hinders access to screening. Ignorance of the modes of transmission of HIV and how the disease develops are also reasons for the spread of the virus.
This is why it is critical that the Bushinengues have access to HIV/AIDS education and prevention services.
AIDES, a non-governmental community-based organization and Johnson & Johnson partner, has helped start a new conversation about HIV in French Guiana. Founded in France, AIDES began to work in the region because HIV is a global issue and the most vulnerable in the world need our attention the most.
AIDES is committed to respecting the cultural and sexual identity of each individual, their way of life, their ideological beliefs, and their therapeutic choices. AIDES is a place of reflection, acceptance, confidentiality and anonymity.
The AIDES team believes that people need autonomy to move forward, to solve the difficulties they face, and to mobilize themselves. AIDES does not make decisions for people, nor does the organization act in their place. Those who are infected and/or affected by HIV/AIDS, as well as their loved ones, are at the center of decision-making processes, projects and their implementation. AIDES enables people to mobilize themselves and to take action, rather than be passive “clients.” This kind of mobilization is essential as it makes the demands and claims of HIV positive people more legitimate.
The aim of a new transborder project is to create a community-based organization across the river in Suriname that will develop a program of community-based actions in health with a local Surinamese partner. Through the participation of local communities and training modules, AIDES will facilitate the involvement of an association of community health such as the Suriname Red Cross Society (SRCS) on the basin of the Maroni river and Coticca Suriname. Joint actions along the Maroni river and Cottica by AIDES and SRCS will contribute to improved HIV prevention and access to care, as well as better social acceptance of the disease.
The exact figure for HIV infection rates in French Guiana is not available, but we do know that prevalence of HIV is at one percent, making it a generalized epidemic. In an effort to educate, AIDES organizes “River Missions” for one week a month. Activists from Saint Laurent du Maroni charter a boat and travel the river to find people where they typically gather – in hair salons, bars, and other community hubs – in order to educate, encourage testing and distribute condoms to curb the spread of HIV.
There are many stories to tell. Miora, 31, was born on the Suriname side of the river, and lives with HIV. Like many people on the Maroni River, she feared judgment and was afraid that she would scare people away if she went to get tested for HIV. When her health began to deteriorate, Miora took traditional medicines, but ultimately she did not trust them. She felt resigned to her fate. She said, “I thought that the world was over, that my life was over. Here, in the Maroni river, it is not as in metropolitan France. We aren’t born surrounded by science and technologies, we don’t know much. Here, life is different. When someone goes to the hospital everybody notices. That is why I didn’t want to go to the hospital and I was quietly waiting for my death.”
Very weak, she finally went to the hospital where she was diagnosed as HIV positive. There, she met a doctor who convinced her to start on antiretroviral (ARV) treatment. As with 96% of the people living with HIV and on ARV treatment in French Guiana, Miora’s health improved a great deal. Soon after, Miora was introduced to AIDES during one of the River Missions in her village and decided to volunteer with the team.
Miora will rarely say she’s HIV positive, but, at the same time, she pushes herself to speak with young members of her village. She has set up at a tent to speak with her peers about HIV/AIDS prevention. The setting is comfortable and non-judgmental. Soon after the discussion is over, one by one they trickle back into the tent to get tested.
Regular screenings and raising awareness through River Missions are a necessity, and have been proven to reduce disease in the Maroni region. In fact, a large international study showed a reduced risk of transmission by 96% when HIV treatment equipment is provided.
Informing the misconceptions of HIV and modes of transmission are not simple tasks, but the people of French Guiana are working to educate each other with the help of AIDES. Like the river, the conversations must continue to flow.
Nathalie Gautier, Communication and Fundraising Manager at AIDES, is responsible for driving development and communication for the association. She is a member of the management committee.