Abstract
Surveillance of pregnancies in women living with HIV is carried out on a national basis in the United Kingdom (UK) through the National Study of HIV in Pregnancy and Childhood. There are currently around 1100–1200 HIV-exposed uninfected (HEU) infants born every year in the UK, where vertical transmission of HIV now occurs in fewer than 5 in every 1000 pregnancies. By the end of 2014, there was a cumulative total of more than 15,000 HEU children with any combination antiretroviral therapy (cART) exposure and more than 5000 with cART exposure from conception in the UK. HEU infants are increasingly being exposed to newer antiretroviral drugs for which less is known regarding both short- and long-term safety. In this commentary, we describe the approaches that have been taken to explore health outcomes in HEU children born in the UK. This includes the Children exposed to AntiRetroviral Therapy (CHART) Study, which was a consented follow-up study carried out in 2002–2005 of HEU children born in 1996–2004. The CHART Study showed that 4% of HEU children enrolled had a major health or development problem in early childhood; this was within expected UK norms, but the study was limited by small numbers and short-term follow-up. However, the problems with recruitment and retention that were encountered within the CHART Study demonstrated that comprehensive, clinic-based follow-up was not a feasible approach for long-term assessment of HEU children in the UK. We describe an alternative approach developed to monitor some aspects of their long-term health, involving the “flagging” of HEU infants for death and cancer registration with the UK Office for National Statistics. Some of the ethical concerns regarding investigation of long-term outcomes of in utero and perinatal exposure to antiretrovirals, including those relating to consent and confidentiality, are also discussed.
Highlights
Specialty section: This article was submitted to HIV and AIDS, a section of the journal Frontiers in Immunology
We describe the approaches that have been taken to explore health outcomes in HIV-exposed uninfected (HEU) children born in the United Kingdom (UK)
The Children exposed to AntiRetroviral Therapy (CHART) Study showed that 4% of HEU children enrolled had a major health or development problem in early childhood; this was within expected UK norms, but the study was limited by small numbers and short-term follow-up
Summary
There were around 104,000 people living with HIV in the UK in 2014, with an overall prevalence of 1.9 per 1000 people aged 15 years or older, based on multi-parameter evidence synthesis modeling conducted by Public Health England [1]. Five in six people living with HIV are aware of their diagnosis, and around 82% have been linked to HIV care. There were an estimated 34,400 women living with HIV in the UK in 2014, with a prevalence of 1.7 per 1000 among women aged 15–44 years. Among people with diagnosed HIV, 91% were receiving. HEU Children in the UK antiretroviral therapy (ART) overall, this figure was 74% in young adults aged 16–24 [1]
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