Alain Volny-Anne
Sol en Si is a community organisation in France founded to support and help families and children with HIV.
Sol en Si is a French organisation that specifically works with families with HIV. It was created in 1990, before the emergence of antiretroviral therapy and the current success in preventing mother-to-child transmission. The ACTG 076 results only came out in 1994, so we can consider 1990 as the peak of the epidemic (at least in France). When we were established, existing organisations were considered either as gay or drug-user orientated. Therefore, we felt that specific support for families with HIV was needed.
Services for children
The organisation is structured so there is always a day nursery for the very young children, which is open from 8am-8pm. This means that working parents can bring their kids, or if someone just needs a rest they can bring their kids just for the day. We also have a transport system to take kids to hospital for examinations and consultations.
One of the first services we provided was volunteers - buddies, to accompany the families, either for the children alone or for the parents as well, depending on what they required. In 1990 people with HIV often had short life spans and helping someone with HIV could be very difficult for the volunteers. Nowadays things have changed and volunteers will often work with families over a long period so it's a totally different situation, but a happy one .We also provide a holiday service - every year a certain number of kids go on holidays with volunteer families, sometimes for one or two months.
We also have what we call emergency foster care in case a mother is very ill and is taken into hospital (this is used less and less now fortunately, due to the current therapeutic background). Then we have volunteers come and pick up the children and keep them at home as long as necessary. This volunteer would then take the child to see his parents in hospital (everything is organised around this) and take them to school.
My own work is in the health workshops in the Paris sites. Twice a week I have one morning dedicated to health workshops so parents can come to me and ask me for information on treatments and about their own health and their children's. Here we address many treatment issues including adherence.
Sites
Our first site opened in Paris in 1991. Now we have two in Paris, two in the Parisian suburbs where lots of immigrants live, one in Marseilles, one in Nice, two cities in the south that have a lot of IV drug users, and French Guyana which is in South America but a French department and also a very specific site because in French Guyana there is a lot of immigration from Surinam, Brazil, Haiti and Guyana. In French Guyana, the rate of infection is one of the highest in France after Paris and in the south of France.
Clients
As we got more and more busy with our first site there was increasing demand due to word of mouth, particularly in the African communities, most of our families are immigrants, about 80% and 20% are IV drug users or ex IV drug users. About 98% our our clients would be classed as being in some way socially disadvantaged.
Today and the future
Today the situation has changed a lot. Fortunately fewer and fewer children are born with HIV in France, but even so we see more and more arriving from Africa who are then diagnosed in hospitals and then referred to us.
We are now wondering if we should open the services to children with hepatitis C, not co-infection only, but also with hepatitis C only. And should we close down some of the nurseries? - maybe they are not as necessary as they were before. The problem is that most of the families that are used to us are not very happy about the idea of sending their kids to city day nurseries, probably for reasons of confidentiality, even though by law it is forbidden in the city nurseries to disclose someone's status. We also surveyed some of those city day nurseries and most of the staff told us they were not ready to welcome HIV-positive kids - so we have to deal with this. Adolescence is a really big issue for us now - we haven't yet decided on how to best serve this growing population.
By the end of 1999 we had received 271 new families, which represents 489 kids. When 1074 families have called on us for any reason in the same year we all remain convinced of our reason for being. This conviction I hope will help us through these new decisions.
What I regret concerning the adherence issue though is that although I have requested many times that the social department of the ANRS (which is our national research agency) evaluate how adherence is improved with the support of all our services, it has no yet been done officially. But I believe that supporting the family in the community is a factor in good adherence for these children.
Alain Volny-Anne is currently working at Sol en Si, an organisation providing services to families with HIV in France. He is a treatment activist and a member of the European AIDS Treatment Group (EATG) and the European Community Advisory Board (ECAB) and represents these organisations on the PENTA steering commitee.
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