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Speaking out on living with AIDS in Haiti
September 2003

By Chido Onumah, Nigeria Officer, Panos Institute

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Eight years ago when Marie Rose was diagnosed HIV positive, she was devastated. The first person the 36-year-old auxiliary nurse called was her sister who cried uncontrollably. Now, at 44, and full of life, Rose reminisces on the past and cannot contain her joy as she tells her story. She has a lot to be happy about. "When I told my family that I had been diagnosed HIV positive, they bought clothes for my funeral," says Rose. "The clothes are still there."

There was no funeral in 1995 for Rose, who is divorced and has three children who are not infected, although she was very sick; so sick that she really believed she would die. She became partially deaf and was bedridden for months. Thanks to her parents who live in the United States, Rose got $3000 US to start treatment in 1998.

Today, a chubby Rose wears a permanent smile. "Having this disease is not the end of the world," she says matter-of-factly. Rose and a group of about 40 people living with HIV/AIDS are on their way home from Canje, three hours drive from Port-au-Prince. They were in Canje for the 9th Annual International Forum on Health and Human Rights.

There is a spirit of camaraderie as Rose and her friends share jokes about condoms and the need for protection, even for people with HIV/AIDS. There is no dull moment; villagers and passersby are forced to notice their bus as it snakes its way through the bumpy and winding roads up in the mountains of Central Haiti.

In Canje, Rose spoke on the rights and aspirations of people infected by HIV/AIDS. It was just a little over a year ago that Rose began her public appearances and campaign on HIV/AIDS and she hasn't looked back since then. She credits the Panos Institute in Haiti for her new public image. In June 2002, she spoke for the first time publicly about her condition at a seminar organized by Panos. "That seminar took away all my timidity and showed me how to be proud of my self and to speak out," says Rose.

Rose is an active member of an organization that is making giant strides in Haiti, the Association for National Solidarity (ASON). ASON mobilizes and assists people infected by HIV/AIDS. Saurel Beaujour, 42, is executive secretary of ASON. Beaujour is a sharp contrast from Rose. He looks considerably older for a man his age and at the moment has sores on his right shoulder and upper arm that have refused to heal. Though he undergoes medical checkups, he has refused treatment, he says, because there is no guarantee that the treatment will be permanent.

A trade unionist and political activist, Beaujour was active in the campaign for democracy in Haiti in the early 90s. In 1993, convinced that his life was in danger, he and his family decided to seek political asylum in the United States. That was when he realized he was HIV positive. To be granted political asylum in the US, all Haitians must undergo tests for HIV/AIDS. Beaujour went back to unionism. But he didn't last long. Living with HIV changed his life. But first he had to deal with family.

Expectedly, his family was shocked and sad at the news that he had contracted HIV, particularly since his wife and four children are not infected. His wife accused him of being reckless sexually and threatened to leave. Not wanting his family to breakup, Beaujour sought counseling on how to live positively with the disease. He got his wife and children involved in the process and, he says, it paid off. Today, Beaujour enjoys the support of his family.

"My oldest daughter understands and appreciates that I am working to save lives and she is proud of it," says Beaujour. His 22-year-old daughter is planning to produce a poster with pictures of every member of the family. The aim is to show that people living with HIV/AIDS need the support of their families. Twice she has invited her father to give talks at her school.

When Beaujour was denied political asylum, he had hoped to resettle quietly into his union job. But whatever hopes he had of leading a normal life were quickly dashed. His colleagues isolated him. Though they later adopted a friendly attitude, Beaujour saw his rejection by the US and the initial action of his colleagues as part of a larger problem facing people living with HIV/AIDS in Haiti, namely discrimination. Beaujour the unionist and political activist soon transformed into an AIDS activist.

In January 1999, he quit unionism and founded ASON. He had made up his mind to devote the rest of his life to fighting the negative public perception of people living with HIV/AIDS. Currently, ASON has over 500 members across Haiti. It has three full-time staff and numerous volunteers. It receives funding from PLAN Haiti, UNICEF and the Catholic Relief Services of Haiti.

The association has yet to receive any funding from the government. Beaujour says there is political will on the part of the government but it is not backed by action. "The government should take charge of buying the drugs for treatment," he says. "We don't want to rely on international organisations. Usually, their assistance is for a year or two and it stops. We need help from the international organisations, but this help should only strengthen government action."

One of the biggest problems for people living with HIV/AIDS in Haiti is lack of access to health care. In June 2003, ASON organised a workshop on HIV/AIDS and human rights. Participants came from the ministries of health and justice, the Organization of American States (OAS) and the human rights community. The workshop called on the government to pass into law a proposition that will pay greater attention to the rights of people living with HIV/AIDS, particularly the issue of access to medicine and treatment.

Apart from conferences and workshops ASON provides counseling for members and a monthly food ration. Membership is open to all those living with HIV/AIDS who agree with the programmes of the association. It plans to set up a skill-training center and some income generating activities for members.

Beaujour speaks of the success of ASON with a tinge of satisfaction. Nothing can be more fulfilling than the fact that many people living with HIV/AIDS in Haiti can now talk about their condition with little or no inhibition, he says. "This is the first time since HIV/AIDS was confirmed in Haiti more than 20 years that the issue is being raised at this level. It is a giant step. When you speak out it helps you live much better because it lifts the burden."

For a man who has fought many battles, the latest is just another of life's many battles. "I used to have regrets, but not anymore," says Beaujour. "AIDS has affected my health, but it has also made me socially responsible. I think the work I am doing is very useful. It is important to prevent others from contracting this disease."

And to those who already have the disease his advice is, "be conscious not to infect others. That's the only way we can help reduce HIV/AIDS".