Living With HIV: How Children Are Making The Successful Transition Into Adulthood

Most of what we read and hear about HIV and AIDS is bad. It is a bleak landscape where good news is generally hard to find.

Let alone what is happening in sub-Saharan Africa and other parts of the world under siege from this virus, the UK too is grappling with increasing health challenges from the HIV/AIDS epidemic.

The National AIDS Trust says the UK will have 100,000 people living with HIV by 2010 and failure of investment in HIV prevention and education is putting thousands at risk.

But, tough as it is to contract HIV as an adult, how much thought is given to those who have the virus at birth? As a child living with HIV in Britain today, how do you face the challenge and stigma of being HIV positive through no fault or direct action of your own? And how do you move forward into adulthood carrying such a responsibility?

In the heart of London, there is a very special clinic which is helping HIV positive adolescents from all over the country move through this journey from childhood to adulthood. The clinic, at St Mary's Hospital in Padding ton, is simply known as the '900'. Its central focus is to manage the successful passage of HIV positive kids from childhood to adulthood through multidisciplinary care.

Children are typically expected to move from pediatric to adult health services between the ages of 16 and 18. This is traditionally acknowledged amongst health professionals as a complex time to turn children over to adult care, especially for those with chronic diseases such as cystic fibrosis, diabetes and heart problems, which used to have high mortality rates in childhood. For kids who are HIV positive, the 900 aims to make this transition as seamless and successful as possible, and it is a UK first in shaping a new approach to the treatment and management of HIV.

"There is widespread recognition that the transfer from pediatric to adult services has been very poorly managed in the past. Often when this transfer has occurred, the level of care has deteriorated. Now there is increasing evidence that shows a proper transition process with shared paediatric and adult appointments can really help," says Caroline Foster, a paediatrician specialising in adolescent HIV, who helps manage the 900 clinic.

St Mary's, part of the Imperial College Healthcare NHS Trust, runs the largest pediatric clinic for kids born with HIV in the UK. It currently treats around 250 children, many of whom come to the clinic from considerable distances with shared care established with district general hospitals, allowing both the sharing of clinical care, expertise and education.

The total number of children known to be living with HIV in the UK and Ireland is estimated at around 1,400 but it is London which has the largest numbers. The average age in the paediatric clinic is 10, and there are now up to 50 young people who are aged 16 and above.

Now that virtually every pregnant woman takes up the routine antenatal HIV test, and if found to be infected can then take up interventions to prevent her baby becoming infected, and children with HIV are surviving thanks to combination antiresonator therapy, the median age of children with HIV is going up, thus generating the increasing need for adolescent care and care as young adults, according to Foster.

"To fulfill their potential, these children now need both medical and psychosocial help. Thus, typical treatment will involve anti retro viral drugs to suppress the virus and also support with problems that tend to come in the teenage years, for example in relationships with friends and family members especially, as this is very much a family disease," she says.

Problems for young people with HIV range from having to live with a chronic disease, adhering to medication which may cause side effects such as lipodystrophy which can be unsightly, as well as psychosocial issues such as the death or ill health of family members and the complex issues of negotiating relationships and your first sexual experiences with HIV. There is also the ever present issue of disclosure, as HIV remains a stigmatizing disease, with at least one example of the bullying on Facebook of a young girl who chose to come out.

Whilst these problems cannot be underestimated, there is good news too and Foster is anxious to make the point. "Four of the young women in this clinic have now had their own babies who are HIV negative and this is great news, because teenagers need to adhere to their treatment to make this happen. I think now we can say that there is a wave of young people born with HIV who are surviving on treatment, transitioning, moving into adult services, getting through school to university and who are fully engaged in getting on with their lives."

One cannot underestimate the issues that young people born with HIV and living in the UK have to deal with. But these issues are relative. In Africa, without treatment, half of kids born HIV positive will be dead by their third birthday.