Next month, a one-day conference, ‘Don’t forget the children’, will discuss how to persuade HIV-positive parents to make sure that all of their children are tested for HIV.

The conference, organised by the British HIV Association (BHIVA) and the Children’s HIV Association (CHIVA), was inspired by the recent death of an adolescent in London whose HIV status was missed during childhood, and who presented with TB and died soon after being diagnosed HIV-positive.

Untested children, and the issue of late presentation and delayed diagnosis of adolescents infected at birth was also the subject of the CHIVA parallel sessions held at the BHIVA Autumn Conference in London last month.

By examining UK and Ireland’s paediatric and adult HIV databases, Dr Katia Prime of St George’s Hospital in south London identified 42 adolescents aged between 13 and 20 who had acquired HIV, survived childhood untested and untreated, and who had presented to healthcare providers in the UK and Ireland up to the end of 2007.¹

The average age of these remarkable adolescents was 14 years; just over half were female and most were born in sub-Saharan Africa, with the average time between arrival in the UK and diagnosis of almost three years, and with 30% being diagnosed more than five years after arrival.

Although half had symptoms that prompted an HIV test, half only tested following the diagnosis of a relative. Dr Prime also presented data showing delays between first being seen by a doctor and being diagnosed with HIV – the average time being six months, with one in four taking a year to be diagnosed.

Most are doing well, and all but one is still alive. However, one adolescent, who presented with TB co-infection, died shortly after being diagnosed with HIV. One of the doctors involved in this case said this was because “the family refused to have their child tested” and said it was “a massive issue”.

“It can be really difficult when you’re seeing HIV-positive mothers to encourage them to test their children, particularly when their mothers haven’t disclosed their HIV status to their children.” replied Dr Prime.

A presentation from Dr Michael Eisenhut of Luton and Dunstable Hospital highlighted that at this HIV clinic, the majority of children of HIV-positive mothers remain untested, despite the clinic’s best efforts. Only 42% of mothers knew the HIV status of their children aged 16 years or younger.²

When he asked the mothers why they had not tested their children, the most common response was the belief that because the child appeared to be well, it could not be infected. Other reasons included feeling unable to cope with a child’s positive diagnosis; a fear of confronting the child with the mother’s own HIV diagnosis; and a fear of feeling guilty if a child turned out to be HIV-positive.

A discussion ensued following both these presentations regarding the ethics of testing teenagers without disclosing why they were being tested (in order to avoid breaching the mother’s confidentiality); the legal impact of not testing, or not disclosing, if a teenager consequently transmits HIV sexually; the possibility that some assumed mother-to-child infections may be due to childhood sexual abuse by a family member; and the possible use of child protection laws to force testing when parents are unwilling.

Newly published HIV testing guidelines have begun to address some of these issues. They state that if a parent does not want the child to be tested, consent issues are complex, but “the overriding consideration must be the best interests of the child”.

The ‘Don’t forget the children’ conference, which will take place on Wednesday 10th December at the Royal Society of Medicine in London, plans to discuss and understand the extent of the problem, its underlying causes and consequences, and develop a consensus strategy to overcome barriers to testing and diagnosis.