There are around 1,200 children and young people in the UK and Ireland who were infected with HIV during birth or infancy, and more young people acquiring HIV through unprotected sex.
A conservative estimate is that 20,000 children and young people are affected by the presence of HIV in their families, many of whom are at secondary school. The number of people with HIV in the UK has trebled in the last decade to 91,500, and a quarter of those infected are undiagnosed. Despite this, last year the Sex Education Forum – based at the National Children’s Bureau – found that a quarter of young people had not learnt about it at school.
The role of secondary schools in supporting young people who are living with, affected by, or at risk of HIV includes responses to individual cases, the delivery of sex and relationships education (SRE), and the way teachers and pupils talk about HIV.
Due to stigma, many children living with or affected by HIV are unaware that the condition impacting them is HIV, even if they take medication or care for a family member. Many become aware it is HIV around the start of secondary school.
During their school career, they will need to grapple with decisions about telling others. If they are themselves HIV positive, they’ll need to get to grips with having been born with a sexually transmissible infection, the “reckless transmission” of which is criminalised. They will need to understand the implications for their own lives and relationships.
HIV is often a family condition and frequently occurring experiences are silence and secrecy at home, mental health difficulties, caring responsibilities, and bereavement. HIV-related discrimination against school pupils occurs the world over.
In 2010, the UK’s Children’s HIV Association struggled to find a school that would hire out its facilities for a summer camp for HIV-positive young people. HIV professionals hear how some teachers reflect the contradiction that exists around HIV, namely that HIV can be seen as both a late 20th century problem that has fallen off the radar and an immediate menace, presented as far more contagious than it actually is.
We’ve heard about families who have had to relocate after their HIV information leaked from the school into the community, and even of one teacher who told a class that if diagnosed with HIV, he would kill himself. The saddest aspect of these stories is that young people, silenced by stigma, feel unable to challenge it.
The impact of a positive reaction to the disclosure of HIV by a young person or parent cannot be underestimated. Most people restrict knowledge of their diagnosis beyond a small circle of HIV professionals. So, an empathetic response from teachers shows students and parents that they can have the confidence in themselves and trust in others.
To young people affected by HIV, effective education and support means recognising that people with HIV are among us, similar to us, and striving to live ordinary lives. In most cases, schools won’t know if a pupil is affected by HIV. There are no known cases of HIV transmission in a school environment anywhere, ever.
There is no obligation to inform a school, and if a young person is well – as many are – often no reason for the school to know. However, young people should feel able to disclose their diagnosis and access any support they need.
One key way to make schools “HIV-friendly” is to mainstream HIV into school policies around health, inclusion, SRE and confidentiality, mentioning it alongside other characteristics and conditions.
In terms of teaching, HIV offers an important learning opportunity as well as being an essential component of comprehensive SRE. Its story features some of the greatest scientific achievements, most inspiring global citizens and most contentious debates of our age. Understanding HIV teaches us all to be more humane, pragmatic and non-judgemental – qualities that are valuable through life for everyone.
Further informationFor more information about supporting students with HIV or teaching about HIV, visitthe HIV Network’s pages on the NCB website.
Dr Hilary Emery is chief executive of the National Children’s Bureau, which works in partnership with educational charities to improve the lives of children.