Placing communities at the heart of treatment work, West Africa
In West Africa, anti-retroviral treatment is gradually being made available to people living with HIV/AIDS. As prices slowly decrease and funding increases, treatment is starting to become a reality.
However, HIV/AIDS treatment is not just about medicines, diagnostics and money. If antiretroviral treatment is to have a greater reach and be provided in a safe and effective way, people need to want treatment, understand it and support each other to integrate it into their lives. So communities must be at the heart of planning and carrying out treatment work. In particular, they have a vital role to play in complementing, not replacing, the work of health professionals – by increasing ‘treatment literacy’ people’s knowledge about what the drugs are and how they should be used) and supporting prevention work and ‘adherence’ (people’s ability and willingness to take the drugs correctly).
In response, in Burkina Faso, Côte d’Ivoire and Senegal, the Alliance is supporting its linking organisations and partner non-governmental organisations (NGOs) to build awareness and skills about ‘community engagement’ in treatment.
The work is based on a set of core principles (such as promoting awareness of rights, and getting health professionals and community members to work together) and the production of user-friendly training materials adapted to the community. In Côte d’Ivoire and Senegal, the materials have already been used to run the first ever national workshops on community engagement in access to treatment, involving NGOs, medical professionals and people living with HIV/AIDS from local community-based organisations and networks who are on antiretroviral treatment.
The biggest challenge when providing community members with training on antiretroviral treatment is to demystify the subject and correct the many myths and misconceptions. The achievement of the Alliance’s work is to show that communities are perfectly able to understand most scientific concepts related to treatment, provided they are trained using participatory methods and explore very practical issues such as the side effects of drugs.
As one participant said, “Before, I used to hate medical terminology but during the workshop I realised that this terminology is not that complicated. It’s actually quite easy to understand.” In the words of another, “Thanks to the participatory exercises we used, I could put myself in the shoes of both the patient and the carer.”
Both in Senegal and Côte d’Ivoire participants said they had gained a much better understanding of treatment and adherence-related issues, which would help them improve their own adherence, or support those on or about to start treatment.
“I was involved in the fight against the epidemic but I didn’t know the side effects of drugs, for example. As a local communitybased organisation, now we can be really useful. With very simple words, we will be able to help somebody to be adherent, to take their treatment, to give information.”
The Alliance’s work is also ‘tailor-made’ to each country, using strategies appropriate to context and needs. For example, in Senegal, where there has been a strong government anti-retroviral treatment programme since 1998, the Alliance linking organisation Alliance Nationale Contre le SIDA (ANCS) is stressing advocacy work with the government. The aim is to ensure that the country’s scaling up of treatment takes into account the role of communities and reaches those in underserved areas.
Meanwhile, in Côte d’Ivoire – which has the highest HIV prevalence in West Africa (7%), and where the national anti-retroviral treatment programme has not been as successful as in Senegal – the Alliance is providing direct technical support to the Ivorian Network of People Living with HIV/AIDS and five of its member groups, helping them to incorporate treatment literacy and advocacy into their ongoing activities.
In Burkina Faso, where only 2% of the 70,000 people living with HIV/AIDS that need treatment are receiving anti-retrovirals, the work of Initiative Privée et Communautaire Contre le SIDA (IPC), the Alliance linking organisation, includes supporting Projet Orange. This unique pilot scheme, run by Association African Solidarité (AAS), gives free care, treatment and support to 200 people living with HIV/AIDS in Ouagadougou. This project aims to show the value of providing a comprehensive chain of community-based services (from medicines to clinical supervision) and empowering its members and their families (from involving them in decision-making to increasing their treatment literacy).
Banse Halidou, programme coordinator at AAS, explains: “We are close to the people. Here they get help with how to live with HIV. We collaborate with the state system and play a complementary role.”
Overall, the work in all three countries has not been without its challenges. There are still huge barriers to overcome – for example, in fighting stigma and building skills quickly enough. However, the Alliance has made an important start to demystifying treatment and helping communities play their full part in rolling it out.
