Fatimata Ball Nurse, National Executive Committee in the Fight Against HIV and AIDS Interview in English Windows Media | MP3

My name is Fatimata Ball, I am a nurse by training. I work at the National Executive Committee in the Fight Against HIV and AIDS, I do the coordination and follow up on activities designed to help people living with HIV.

What’s special about Mauritania is that it’s an Islamic Republic. The strength of Islam is very significant. There’s a good side, which gives rights to everyone, including people living with HIV: like the right to assistance and care.

But also there is a down side, like, for example, you can’t talk about sexuality and condoms freely. The level of HIV prevalence in Mauritania is less than one percent. So AIDS is not really perceived as a major threat by the population.

In family life, the main problem is fear of contamination. And HIV is seen as a synonym of imminent death and a person living with HIV is seen as a useless waste of resources. That’s how people have viewed HIV in general over the last few years and it’s still a bit like that in our society.

We do talk about HIV on the radio and on TV but in my view not often enough nor sufficiently in depth. I think it is important to tell people that HIV is real, here’s how it gets transmitted and it’s important to hear that coming from medical professionals. But there’s also a human dimension to HIV and it’s important to show people living with it. Today in Mauritania there are only two people who are prepared to do that. But whenever we go somewhere to give a testimonial about what it’s like to be living with HIV it’s clear that people are skeptical. We can tell that initially, they don’t believe what we have to say. But afterwards they’re more relaxed about it, they’re more convinced and that inspires them to go and have a medical check. The message comes across quicker and more easily.

I give testimonials at training sessions. I talk about HIV, and I start by saying that I am HIV positive and so is my husband. I talk about how we cope with the disease, how it started. All the difficulties that we had and where we are at present. I explain what AIDS is, how it gets transmitted and I give examples of people who have been discriminated against, telling them that everyone’s affected and I explain that HIV is not transmitted from hand to hand, you can’t catch it from people’s clothing; that you can eat with this person, live in the same house, so there’s no reason for rejecting them.

Being a Muslim, and you always have to take that into account, being a Muslim, we don’t have the right to discriminate, it’s against the principle of Islam. People cry when we tell them about people who have suffered because of stigma and were left to die because their families threw them out onto the street. I think I get quite aggressive when I get onto discrimination and stigma. I always point the finger of blame, I blame society, I tell them they have a role to play and they must play it. When there’s a big meeting about AIDS, I sometimes get invited. For example, one time when I was talking about stigma and discrimination I gave a few examples of people I’ve come across. There was an old woman who got up and said to me “I have a cousin who has HIV. When I found out, two years ago, I didn’t go and visit her. When we see each other, I cross over to the other side of the road. But tomorrow I’ll go and see her and I’ll hold out my hand to her.” It may seem small on a national scale but it’s something important and it’s something very positive. And we even get involved in family life. We make home visits with the organization Espoir et Vie – or Hope and Life. I visit people who are already sick. Help them to talk with their husband or wife, encourage them to get tested, explain to them carefully how HIV is transmitted because people are afraid, they think it’s contagious. As soon as they realize that it’s not contagious and the person is not a danger we can talk to them more easily.

We have a lot of cases of discrimination and stigma liked to HIV. Especially in terms of inheritance rights – that’s something I really cannot get straight and I keep coming up against it. It’s such a shame, but I think that there will be a problem as long as we are not able to address society directly on TV, because that’s the surest way to say; “here I am, I have HIV and it’s not written on my forehead and I am not a danger to the population. The danger is you, you who ignore your HIV status, you who should be careful, who should go to get tested first for your safety and for the safety of your family. I need you to live. People like me need your support, your affection and we can live with HIV, it’s not a sign of imminent death, we can live with the disease and still function.” And that, I think, is very important and could have a positive impact.

The first problem is that anonymous free testing is not working particularly well. Already, people are afraid to get tested because they say they will discover they are sick because they don’t have enough information on counseling and care. And even some of them say that HIV doesn’t exist and it’s made up. So that’s why I insist they have to see these people living with HIV. They have to hear them to be convinced. And some refuse to go to get tested because they are afraid of the results and think that once they’ve been tested they’ll be thrown out.

Some people think that once a person has been tested, then they go to hospital and get a lethal injection. Some people think that people living with HIV are shut up in a hospital and never come out. So, just to say that really the awareness campaign leaves a lot to be desired.

Once people have been tested, there is only one place they can go for medical care centre, and that’s the medical centre at Nouakchott. And that makes things more complicated. People have to come in from the depths of the country and to get here you need money. Not just for transport but once you’re here you have to pay for a room and things like that. So the person finds it hard to come. When we help get them here, it’s hard to find them somewhere to stay because they may have been rejected by their family, they’re afraid to take the pills, they’re afraid to go too often to Nouakchott incase their family finds out they have HIV, they’re afraid to explain what they’re doing to their husband or wife, to their children, to their parents.

That causes plenty of problems for care giving. Even though it’s available and it’s free, you always have to be behind the person explaining the point of adherence, and also the importance of sharing their status with people close to them so they can help them to take their medicine. Because when the family is confided in, the person lives better with HIV. The person is able to take their medicine at the right time and there’s always someone to remind them “have you taken your medicine?”. But if they don’t know, they’ll keep asking “what are you taking, why are you taking all those pills?” Because Mauritanians are extremely curious people.

The organization Espoir et Vie – or Hope and Life – organizes home visits, group discussions, treatment support and the purchases drugs – but not Anti retro-viral drugs. They’re drugs for opportunistic infections, for example gynecological medicines or children’s medicines or other kinds.

Espoir et Vie provides support partners for people who are sick, it’s financed by the Global Fund. The organization finances projects for Orphans and Vulnerable Children (OVCs) with a special focus on schooling and food programs, the distribution of meal kits, and in addition there’s also the provision of medical care for Orphans and Vulnerable Children. So, all that’s carried out by the Global Fund program.

It’s a start, it really is, but there’s still a way to go, because there are a lot of people who are sick and numbers are only increasing. Previously we were providing care for 600 people living with HIV and 600 Orphans and Vulnerable Children, but now, the number of people needing care is around one and a half thousand so it’s gone up a lot.

And there’s plenty of room for improvement in terms of care, to really give it more emphasis, because when someone gets tested for HIV and is positive, we go and see their parents, to help explain the situation, share information with them and encourage them to get tested themselves. Post testing, most of them are in a bad state, either physically or financially – these are the people we need to help, we need to support them and for that we need sufficient means. Really, everything has to be put in place so that we can see things through. Instead of someone just finding out their status and leaving that person stranded.

We also provide Anti-Retro Virals (ARVs), not very many, it’s a small program. The Global Fund has donated ARVs but we haven’t started the project yet. I really hope that those who have something to gain will benefit, because as well as those who are getting help, there are also people who are even more vulnerable who we should be helping. We have to offer them assistance, help them get back to living life to the full, getting a job and living with dignity instead of just hanging around or having to beg for help.