“Dealing with HIV is a responsibility thrust on teenagers at a time any responsibility is a new challenge,” says Katia Prime, HIV consultant at St George’s Hospital in south London. I’m talking to her about the range of services the hospital offers children and young adults.

“Yet never forget,” adds Wendy Majewska, a health adviser, “that the majority of the young people we deal with are well, at school or university, and somehow they flourish with that heavy rucksack of HIV they carry.”

In the UK, only one in 50 people with HIV was born with it or infected as a baby.¹ Thanks to one of the world’s highest rates of antenatal testing and prevention of transmission in pregnant women, only one in 250 HIV diagnoses – about 30 a year – is now in an infant.²   

Altogether, around 1250 children and young people currently living in the UK and Ireland face the challenges of growing up with HIV. This figure includes children infected in infancy but diagnosed after entering the UK from other countries, mainly in Africa, as well as children infected here. But it excludes the 100 or so teenagers each year who acquire the virus from early sex or child abuse or, in a couple of cases, from injecting drugs.

Increasingly, children with HIV are now entering their teen years. The Collaborative HIV Paediatric Study (CHIPS) is a collaboration of around 60 HIV clinics, which treat virtually all the children with HIV in the UK and Ireland. The median age of patients in the CHIPS cohort is now twelve; a quarter are 15 or above.

Paediatric HIV clinics have had to set up transitional arrangements to support young people making a precarious journey from being in paediatric care to independence, attending their own appointments. ‘JD’ provides an account of her own experience.

It’s not just the young patients who have to adjust, but their healthcare workers too.

What about privacy and confidentiality, for instance?

“It’s a sliding scale,” says Katia Prime. “If it’s a one-year-old child, everyone – healthcare workers, social workers, whoever else is involved in their care – is aware of their status and involved in case discussions. By the time they get to be 13, their privacy is becoming a real issue and one has to start asking their permission to share data.”

Parents and carers have to step back too, as with all teenagers. But there can be acute worries.

Christina Newbould is a clinical nurse specialist at St Mary’s paediatric HIV clinic in London.

She says: “It’s really hard sometimes for parents to let go. To have the experience of sitting outside the consulting room for the first time while their 12-year-old is with the nurses. By the time they’re 15, when a parent comes to me and says ‘I’m so worried about her, is she taking her meds?’ I have to say, ‘Well, I can’t really tell you any more if she doesn’t want me to’.”

How well do young people do on treatment? Suppressing viral load may be more problematic in children as they tend to have higher viral loads and may already have been through a lot of HIV drugs (half of the children aged over ten in the CHIPS cohort had taken three or more classes of HIV drugs). CHIPS reveals that 84% of the cohort are on treatment, a bit higher than the proportion of adults, but that only 70% of those had an undetectable viral load at the end of the first year. This compares with 85% of adult patients in London with a viral load under 50 copies/ml after a year’s therapy.³ 

Nonetheless, overall the cohort is in a reasonable state of health. Only 4.5% of the CHIPS patients have a CD4 count under 200 and 15% under 350. This compares favourably with the 6% of adult patients in London who have a CD4 count under 200 after a year in care. 

Adherence seems the number one concern for those working with teenagers.

Caroline Foster is HIV consultant at St Mary’s Hospital and chair of HYPNet, the HIV In Young People Network, a multidisciplinary group of health workers and voluntary agencies working with 12- to 24-year-olds, which was set up as a link between CHIVA (the Children’s HIV Association) and its adult equivalent, BHIVA (the British HIV Association).

“Many young people do fine,” she says. “But for others adherence is very, very difficult. People say ‘Oh, maybe they’ll sort themselves out’ if their adherence gets worse during their teens, but what we find is that a lot of children, often for very complex reasons, haven’t had enough support when young and the pattern of adherence you start with in childhood is the pattern you’ll have in adulthood.”

In a paper on optimising HIV therapy for adolescents, Foster and her colleague Sarah Fidler note that European data show that children are 2.4 times more likely to fail HIV therapy if they start treatment aged 10 to 15 than children who start aged 5 to 9.⁴

Christina Newbould agrees.

“I think if you haven’t got adherence licked by 12, your chances of succeeding later are shot. It’s very depressing. We sadly still see 20-year-olds occasionally dying of a treatable virus.”

A lot of it has to do with family circumstances, she says. “Some parents expect the kids to do it unsupported. More often adherence problems are due to previous bad experiences with AIDS. Kids’ adherence is better if they have the experience of parents remaining well; conversely, we struggle with kids whose parents have died as they can’t shrug off the feeling it will happen to them.

“And some is about basic self-esteem and stigma. We had a male African teenager from a strict Muslim family, who had acquired HIV after a sexual assault. He could not tell anyone he knew about his HIV and the first thing his parents said after they heard his diagnosis was ‘We will not arrange a marriage for you’. This in a culture where, if you are not married, you are no one. He couldn’t find any reason to take his pills.”

She finds that there are two groups of teenagers who are problematic, for different reasons.

“The medically problematic are the kids infected at birth who may be massively treatment experienced. They have had lots of suboptimal therapy, and may have had multiple bereavements.

“In addition, they often have neurological problems related to HIV and developmental delay – small stature, late puberty, difficulty in concentrating. You find yourself working with a 20-year-old who has more of the appearance and maturity level of a 13-year-old.

“The socially problematic are most frequently kids diagnosed later, often after arrival in the UK. They may have arrived as unaccompanied minors and are being looked after by parents who don’t really know them, an extended family or ‘aunt’ who is in fact a foster carer. We’ve had to ask carers for DNA tests to prove they’re blood relatives before now.

“This is also the group in which it’s most common for parents/carers to refuse or withdraw treatment, rely on cures through prayer, and so on. When the child is diagnosed late, the parents may only ever have heard about HIV via their church.

“We are conscious that some families don’t really believe in the treatment but give it anyway because they know social services will be involved if they don’t. So what are the chances that the young person in that climate will be keen to take treatment after they are no longer a minor?”

At St George’s, Wendy Majewska says, “Only one in ten of our teenage patients are the problematic ‘did-not-arrive’ type but they’re the ones we worry about.

“We try all sorts of stuff that’s not traditional medicine. We engage the community nurse specialists who will go round and visit them, knock on doors and so on. With their permission, we engage other trusted adults who they have used as supporters: the local pastor, for instance, or a teacher. Between 13 and 17 they attend our teenage clinic and everything is laid out for them, they get the pills in pre-ordered boxes, phone support, and so on. By the time they get to our young person’s clinic (for 18 to 24 year olds) they have to start asking for adherence help, though.”

The hospitals I talked to operated two slightly different models for the transition from paediatric to adult care, roughly conforming to two different models suggested by CHIVA.⁵ At St Mary’s, young people go from the Family Clinic to the 900 Clinic, specifically for teenagers. St George’s has the Penta Adolescent Clinic (13- to 17-year-olds) and the Penta Young Person’s Clinic (for 18- to 24-year-olds).

“I have a role as the transitional care consultant at St Mary’s,” says Caroline Foster. “My job is explicitly to manage the transition…and to provide continuity of care.”

Paediatric HIV clinics have wide catchment areas – at St George’s, families travel in from as far as West Sussex. This may become a problem for older teenagers and, although most would prefer to stay with their original hospital, some will need help to move to a local clinic.

CHIVA’s model of care slowly introduces children to the knowledge that they have HIV before puberty; they should know the name of their condition by the time they are 12.

This is so that the necessary and sensitive process of sex and relationship education can start before they start having sex.

Christina Newbould explains how it happens at St Mary’s.

“By eight to nine years old, we find, kids often start asking questions such as why they have to take pills or go to hospital when their brother doesn’t. Many parents really can’t find the words so we help them. Initially we start giving the kids more and more information on staying strong and healthy: food, exercise, and their medicine.

“Then, six months later, we’ll check what they remember from our previous talk, and we’ll introduce the idea of the immune system and talk about cells that fight off infection, and maybe tell them that they have a condition that stops them fighting.

“Six months later, we’ll introduce the idea that they have a viral illness, and six months after that, we’ll name it as HIV. At that point, or at the next visit, if they’re with their mother, we’ll introduce the idea that their mother has the same virus.

“I don’t find kids react strongly to the specific name of their infection: remember, they have lived with it since birth, so they don’t face the unknown. Some will twitch and obviously hold back a reaction: they’re the ones who have already guessed.

“The parents are often much more afraid of disclosure. They’re concerned about the child going into the class and talking – and we reassure them that they almost never do – and they’re often consumed by the guilt of infecting their child.

“If they’re really reluctant we emphasise that there are so many ways the child could find out accidentally: what if your home village came up on Comic Relief? What if the name of your medicine came up on TV and they know you take it?”

“We don’t usually at that stage start talking about safer sex: in any case, we often find that teenagers prefer a different professional to talk to than one they’ve grown up with.”

At St George’s, Katia Prime also believes that it’s hard for teenagers to talk about sex with familiar doctors. One girl said to her: “I’ve had the same doctor since I was a baby; he’s like my parent. I can’t talk to him about sex. I don’t want to disappoint him.”

“A young person’s first sexual partner may also be the first person they’ve ever told about their HIV status,” says Caroline Foster (19-year-old Max, relates just such an experience later in this issue).

“Some teenagers seem to sail through the complexities of negotiating sex and relationships but for some, especially those who may be more thoughtful and reflective, it can be really difficult. Boys can suffer a lot of performance anxiety and with girls, it’s about being sexually empowered enough to even know whether the boy has used a condom, let alone persuade him to if he doesn’t want to.”

Wendy Majewska comments that difficulties in both disclosure and adherence are often driven by the same anxieties.

“With girls, I find it’s about peer pressure, of desperately wanting to forget you have HIV and just wanting to be a normal teenager. So they think ‘If I don’t take my pills/go to the clinic, I haven’t got it’; similarly ‘If I don’t discuss it, I haven’t got it’.

“With boys, yes: terrible performance anxiety: condoms are fiddly enough for teenage boys anyway, but if you’re frightened of infecting your partner if it goes wrong, that can be an intolerable pressure. It’s terribly lonely telling people.

“We don’t go straight from paediatric care to ‘Did you have vaginal or oral sex?’ in that really clinical way anyway. We’ll start with the under-12s in talking about friendships, and about disclosure to friends, asking them to run through ways of disclosing their status, once they know it, in their minds.”

David Cox, another health adviser at St George’s working with teenagers, says: “The first reaction I often get from teens who’ve grown up with HIV is ‘That’s it. I’m never going to have sex!’ The burden of responsibility they assume and the fear of infecting their partners is huge.

“Because of that, we emphasise that there are things that we can help with if there’s a condom accident or just an impulsive night. Sometimes accidents happen.

“We make sure they know about post-exposure prophylaxis (PEP) and we run through the law on criminalisation of transmission, but in a hopefully positive way – ‘As long as you’ve told them, you’ve got no reason to fear this’ – that sort of thing.”

Katia Prime adds: “I have on occasion used the argument that if they have an undetectable viral load on treatment they’re more likely to be less infectious as an incentive for adherence, but it can backfire. One boy’s girlfriend, who was negative but came along to talk about it, understood it to mean ‘He only had a little bit of HIV but he’s all right now’.

“Really, I’m surprised how many actually do tell their partners,” she adds. “And very often they bring their partners in or ask that we talk to them.”

Caroline Foster concurs. “Teenagers may be irresponsible sometimes, but they’re dealing with this whole mosaic of new life tasks that don’t fit together easily, so I’m not surprised. For instance, a girl asked me if she could stop her HIV treatment around the time she was taking her exams. She didn’t want that extra anxiety.

“Any way we can reduce that anxiety helps. For instance, in the leaflets for teenagers designed for HYPNET and CHIVA we didn’t mention HIV on the cover, because the feedback was that they’d be too anxious to carry around something with HIV prominently there in case it fell out of their pocket.

“At the same time they impress me with their responsibility and protectiveness. For instance, I know one young woman who actually told partners she had caught HIV through sex, because she didn’t want to ‘out’ her mum as having HIV.”

“The reward for me as a healthcare worker,” says Christina Newbould, “is that I’ve worked as a clinical nurse specialist for seven years and on the AIDS ward before that. At the time I couldn’t see how these kids could ever have a normal life if they did survive. Seven years later I have them coming in and saying ‘You see? I told you I’d be OK.’ It’s a privilege to be part of someone’s normal, adult life.”