Alice Fay: Living with HIV in the Democratic Republic of Congo

Alice FayI was in the Democratic Republic of Congo (DRC) recently and met a young man, Jean Claude (not his real name), aged 17, who is living with HIV.

We are starting a new programme in the DRC about responding to HIV and I was very keen to have people living with HIV involved right from the beginning, so we invited some people, including Jean Claude, who are open about their HIV status to join us for our start-up workshop. It was very enriching for everyone to have them with us and to help us to understand much more about the realities of living with HIV and the implications it has on day to day life.

Jean Claude, a tall softly spoken young man, was very open with us about his story. He told us that his parents had both died from AIDS-related illnesses when he was a very small child. However, he was not told the truth about how they died until he was 15, when he himself became very ill and had to stay in hospital. He was then tested for HIV himself.

Jean Claude tested positive. He started taking antiretroviral medicine (ARVs) which made him feel better and built up his immune system.

In the meantime, the relatives he was living with rejected him and considered him useless. They thought he wasn’t worth investing in because they thought he was going to die soon and refused to pay his school fees.

As he faced increasing stigma and discrimination in the community and at school, he tried to hide the fact that he was HIV positive from his school friends, but one of them went through his bag and found a box of ARVs.

The supply of ARVs in the DRC is highly unreliable but it is crucial that they are taken every day without fail to boost the immune system which is attacked by HIV.

For this reason Jean Claude receives a call from the local clinic when a new batch of ARVs arrive and he has to drop everything to go and collect them. Often he has had to sneak out of classes at school to fetch them.

It has not been easy for Jean Claude to accept his HIV status, he contracted a sexually transmitted infection not through sex, but though his parents. He has had a lot of counselling and support from other people living with HIV, and he is now an open and active advocate for people living with HIV.

There are 33.3 million people globally living with HIV, but no official estimates on the number of people living with HIV in the DRC. What we do know is that the majority of people who have contracted the virus in the DRC are unaware of it and those who do know their HIV status face challenges similar to Jean Claude.

Save the Children has just started a new programme to support communities to respond to some of these problems, supporting vulnerable children who can’t get to school or to the health centre, and we are working with communities to help them understand HIV better and encourage them to support people living with HIV, rather than discriminate against them. 

December 1st is world aids day, and there is much to contemplate. Although the overall number of people living with HIV is falling, mainly thanks to greater access to ARV’s, the proportion who are children is rising.

Jean Claude has access to ARVs, but the unreliable supply, the stigma, and discrimination mean that he is still in need of a lot of support and care.

Alice Fay is the HIV programme advisor, Save the Children.

The patient’s consent was obtained for this blog.

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