Scientists have highlighted for the first time the plight of the growing number of older children and adolescents living with undiagnosed HIV and AIDS in Africa. In a study published today in Clinical Infectious Diseases, Wellcome Trust researchers claim that delay in recognising this problem means that the needs of this important group are not being met.

It is estimated that half a million babies were infected with HIV during birth or breastfeeding in 2006, passed down from their mothers. It was assumed that their chances of survival to adulthood were negligible. However, a new study, carried out by researchers based at the Connaught Clinic in Harare, Zimbabwe, shows that older children and adolescent with AIDS have all of the features that would be expected from long-term survivors of infant HIV infection.

“The findings are quite extraordinary,” says Dr Liz Corbett, a Wellcome Trust Senior Clinical Fellow in Tropical Medicine from the London School of Hygiene and Tropical Medicine, based in Zimbabwe. “The phenomenon of long-term survival is poorly recognised and until recently has been almost positively resisted by the international HIV community because of the strongly held assumptions that HIV in late childhood is very unusual, and that survival from birth to adolescence with HIV was so unlikely without treatment as to be negligible. This just doesn’t fit with what we see in Zimbabwe and hear from neighbouring counties.

“It is now being realised that these earlier assumptions were wrong and that instead somewhere around 1 in 10 infected infants – and perhaps even as high as 1 in 4 – may survive into late childhood or early adolescence without diagnosis or treatment.”

However, late diagnosis is likely to have a significant effect on their future health and long term survival, warn the researchers.

“Early diagnosis of HIV is very important,” says Dr Rashida Ferrand, a Wellcome Trust Research Training Fellow. “A delayed diagnosis means that patients have a much higher risk of developing serious opportunistic infections and may have significant and irreversible damage to vital organs such as heart and lung as well as a higher risk of death. We also know that antiretroviral therapies (ART) are less effective if started in patients with advanced disease.”

Dr Ferrand and Dr Corbett argue that there is a need for more services aimed at older children and adolescents to provide accessible and sympathetic HIV testing and treatment services, counselling and support, and drug formulations for low-weight individuals whose growth may have been stunted by undiagnosed HIV.

“Because of the previous assumption that HIV-infected infants did not survive to adolescence, no concerted effort has been made to provide diagnostic or treatment programmes for this age-group, despite an epidemic that is becoming increasingly obvious to anyone providing routine medical care in Southern or East Africa,” says Dr Corbett.

It is important to recognise that these children may have already suffered terribly from the indirect effects of HIV, such as orphanhood, impoverishment and the psychological trauma of prolonged illness in parents and siblings, argues Dr Ferrand.

“Simply caring for these patients in existing services is not ideal because they have problems unique to their age-group and circumstances, over and above coping with their own illness,” she says. “These include a lack of awareness of their own diagnosis, their emerging puberty and sexuality, caring for sick parents and coping with the social and economic consequences of orphanhood. Hence, provision of effective HIV care and treatment will require additional support and special services to deal with these problems.”

The researchers believe that adolescents would benefit from earlier diagnosis of HIV status, help to parents or guardians who may be reluctant to tell the child what their problem is; adolescent-focused support to ensure adherence to treatment regimes; a focus on the chronic problems associated with HIV (such as short stature and delayed puberty) and the complications of antiretroviral therapy; and support for those undergoing puberty or who are sexually active, such as counselling on prevention of transmission and contraception, and disclosure to sexual partners.

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