The Chiva Youth Committee on What it’s Like Experiencing HIV Care and the Importance of Correct HIV Information in Schools

We were delighted to be joined by eight members of the Chiva Youth Committee (CYC) at the 20th Annual Chiva Conference on Friday 13 March 2026. 

They warmed up the room with an interactive activity that highlighted the fact that only 37% of the CYC felt fully informed about transitioning from paediatric to adult HIV care.  

Attendees were shocked by this and asked the CYC what they think could be done to improve this. The CYC suggested someone from the paediatric clinic attend the first appointment in the adult setting. Chiva CEO, Amanda Ely added that that Clinical Guidelines advocate for 12 months transition support. Tristan Barber, Chair of the British HIV Association (BHIVA) added that they will ensure this is also included in their transition guidelines, currently in development.                                       

In addition, they reported that most CYC members did not receive regular updates about Chiva opportunities from clinic appointments. Their advice to clinic teams is to repeat information about Chiva. One brief mention may not be enough. 

On a positive note, the CYC feel very supported both emotionally and medically by their doctors and nurses.

They performed a series of sketches to demonstrate bad practice experienced at clinic and how clinicians can foster a positive experience by taking time to see them as a whole person, informing them of additional intervention and therapies that may support them, and reminding them of the opportunities offered by Chiva for peer support, events and advocacy. 

A question from the audience about how we can improve knowledge about HIV within the school population opened an opportunity for the CYC to mention their Education Toolkit, which they developed with Chiva to help schools educate pupils with up-to-date HIV facts and inspire them to challenge HIV stigma and discrimination.

Chiva Chair, Dr Amanda Williams shared that earlier discussions between the CYC and the Chiva Steering Group had highlighted that HIV-related content in the GCSE and A-Level Biology curricula – and GCSE exam paper questions – are often misleading or stigmatising. On the back of that, Chiva with National AIDS Trust raised the issue with the Department for Education in 2025 who subsequently agreed address the issue with all exam boards and in their ongoing curriculum review.

The CYC are central to the work of Chiva and the symposium demonstrated how they are changemakers in many different areas.  

Critical reviewer: Chiva staff member