According to the National Aids Trust (NAT), the number of children under-18 estimated to be living with HIV in the UK is around 1,200 and as treatments and awareness continue to improve, this number continues to see a decline. However, because silence persists about this invisible HIV-positive community, the stigma still remains. I investigate just what it is that is keeping paediatric HIV a silent taboo.
Although it is true children make only a tiny proportion of those living with the virus in the UK, HIV can still be as – if not more – destructive for them as it is for the most at-risk groups – men who have sex with men and heterosexual, UK-based Black Africans – to whom the majority of HIV-awareness campaigns are targeted. Darshan Baskaran, a cell biologist and PhD student researching HIV says: “the only thing I am aware of [in terms of differences between the effect of HIV in children and adults] is that the progression to Aids may be quicker in children because they have a young immune system.”
For children currently living with the virus in this country, the most likely way they contracted it was through mother-to-child transmission, according to Abi Carter, the participation officer of the Children’s HIV Association (CHIVA).
“Most of the children we work with were born in the 90s,” she says, and says that they don’t work with as many younger children in the organisation thanks to the relatively new introduction of routine testing of HIV in pregnant mothers which has kept mother-to-child transmission of the virus under control in recent years. Carter adds that these days, only around one per cent of all babies born in a year to HIV-positive mothers will carry the virus.
But despite the reality that today you can don a red-ribbon in public without attracting scornful stares, at large, attitudes towards HIV and Aids and those affected by it are far from friendly. Ideas that HIV is a death sentence reserved for the promiscuous, poor and marginalised still cloud British society, and children are not exempt from these stigmas.
Although it is uncommon for children living with the virus to have contracted it sexually, many have been subject to bullying and mistreatment due to the idea that they may have contracted it that way: “we have lots of examples of young people whose statuses have been made public and they would be called ‘slags’,” Carter says.
Because many HIV-positive children are only told about their statuses when they are older, by the time they find out, Carter says, many of them would have already internalised the stigmas attached to the illness: “a lot of them are in complete denial, they don’t want to know that this has happened.” And the mothers of these children are not spared of this suffering either; they often end up shouldering the guilt that comes with both passing the virus onto their children – which may have happened unknowingly – and not telling them at an early age that they have been infected.
Although charity organisations like CHIVA try to create safe spaces for children where stigma is curbed as much as possible, children cannot be completely sheltered from it. “We advocate that they [the children] are told from an early age about it [their HIV status]…we advocate that it’s always named,” Carter says. But she says that children are told that their status has to be kept a secret because of the stigma they could face: “a school contacted us when the HIV-status of a child became public; they were worried about the parents’ reaction.”
The misconceptions that Carter says some children and their parents have about interacting with HIV-positive people are the kind that HIV-awareness campaigns have tried to debunk time and time again. No, you can’t get HIV from sharing food with HIV-positive people, or from swimming with them, and you won’t get it from hugging or kissing them either.
But stigma and the inevitable bout of ignorance attached to it seem to not just be limited to people’s conversations. A 20-year-old Politics student who just goes by the name “Georgia” thinks that classes like her year seven sex-education class have had a part to play as well: “they taught us that it [HIV] was really easy to catch and that it would ruin our lives, and that we wouldn’t be able to live a normal life, which is completely untrue!”
She also says that she thinks that she and the other children probably left class that day with the idea that even being around someone HIV-positive would have somehow put them at risk of contracting the virus. She later learned, however, that HIV was not the end-all she thought it was after talking to her mother, whose close friend was living with the virus.
After that class, she says, the word “Aids” became an insult: “I remember after this [the class] there were a few of the popular boys who if they didn’t like something, they would say it was ‘Aids’, like, ‘the class is Aids’…it was just a big joke.” Georgia also says that at that time, the thought that children could contract HIV was unimaginable, unless they had been sexually-active. But now, she says, she knows that’s not true because she took it upon herself to do some research. “It should have been taught then,” she says.
So what exactly can be done to break the silence on paediatric HIV? And how can we help those who have been affected? “Kids need to feel like they are not alone, like they’re not the only people in the country going through this,” says Carter. She also adds: “we need the people to raise awareness for themselves. The rates of HIV are increasing among the heterosexual White population.”
Georgia also thinks that awareness is key and says: “I think there needs to be a lot more awareness, especially about the fact that it is not just contracted sexually, and I think people need to know that it is no longer a death sentence.”
If you would like more information on CHIVA or paediatric HIV, visit their website at: http://www.chiva.org.uk