Putting those with ‘lived experience’ at the heart of HIV decision making
Kenya is one of the highest HIV burdened countries in the world, with the fourth highest number of people living with HIV (1.6 million). At the peak of Kenya’s HIV epidemic in 1993, 230,000 people were becoming infected each year. In 2016, due to the rapid scaling up of HIV treatment and care over the past two decades, this has been significantly reduced to 62,000 per year. The number of AIDS-related deaths has also significantly been reduced. However, only 64% of adults and 65% of children in Kenya are receiving anti-retroviral treatment (ART) for their HIV, and although awareness of HIV and AIDS is high in Kenya, many people living with HIV face high levels of stigma and discrimination which prevent them from accessing HIV services.
The National Empowerment Network of People living with HIV/AIDS in Kenya (NEPHAK) was founded in the mid-1990s as a network of support and information sharing. It unites people living with HIV (PLHIV) and those affected by tuberculosis (TB) and AIDS through post-test clubs, support groups, community based organisations, non-governmental organisations and networks. NEPHAK’s purpose is to enhance the knowledge and skills of PLHIV and affected communities in Kenya to participate meaningfully in TB and HIV/AIDS response policy, decision-making, mainstreaming and programming initiatives.
NEPHAK Director Nelson Otwoma describes how children who are born HIV-positive and are on lifelong treatment are rarely told the truth about why they must take medication. This can cause teenagers to stop taking their medication when they find out about their HIV status. “A number of people who stop taking their medicines at some point are those whose parents or guardians had not told them about their status.” He said. “These children end up knowing about their status when they are in their teens, and some of them also get the wrong information from their peers”. Parents and guardians commonly conceal the truth from their children about the medication they are being given by saying the medication is for TB, pneumonia or malaria instead of HIV. Others are told simply that the drugs were to keep them from getting sick.Otwoma and NEPHAK believe young people should be told the truth about their status from a younger age and that more awareness raising and education is needed to change attitudes towards PLHIV. “When you keep telling young people false things about their status and the medication, they will lose their trust in you and default on their medication” explains Otwoma.
NEPHAK believe that PLHIV should be at the heart of decision-making about tackling HIV. They also believe that in order for PLHIV to be able take this lead, their networks must be supported and funded. They see that all efforts aimed at responding to stigma and discrimination against PLHIV are bound to fail if they are not led by the very people who have experienced and confronted that stigma and discrimination.