UK Community Advisory Board (UK-CAB)

UK-CAB 64: 19 January 2018

Children and teenagers with HIV

Friday 19 January 2018


09.20-09.40 Arrival, tea and refreshments
09.40-10.00 Welcome and introductions, UK-CAB updates
10.00-11.30 Introduction to clinical trials – Damian Kelly
11.30-11.45 Break
11.45-12.30 Mind the Gap – transition to adult care – Dr Caroline Foster, Imperial College NHS Trust
12.30-14.00 Lunch
14.00-15.30 1. Personal experience – Tania Okito,  Youth worker, Positively UK2. Achieving holistic well being for children and young people growing up with HIV’; An overview of CHIVA’s work  – Amanda Ely and CHIVA Youth Committee member
15.30-15.45 Break
15.45-16.55 Conferences feedback – EACS, BHIVACommunity reps feedback

Members updates

Reflection and feedback of the meeting

16.55 AOB
17.00 Meeting close

Presentations from this meeting

Introduction to clinical trials
Mind the gap – transition to adult care
An overview of CHIVA’s work
BHIVA conference feedback
BHIVA standards of care 2018 update

Background reading

CHIVA guidelines for the care and treatment of children living with HIV. These includes children born to mothers with HIV.

CHIVA Guidance on Transition for adolescents living with HIV

Fit for Purpose
This booklet is about treatment optimisation for adults and children. Chapter 3 focuses on the paediatric pipeline for children.

People shifting from paediatric to adult HIV care have a high risk of ART failure
Article from NAM on challenges faces by young people during transition to adult care

Avert website an overall look at social issues affecting young people with HIV globally.“>Chewable raltegravir tablets can be crushed and dispersed in liquid for young children

FDA approves raltegravir for newborns

Useful resources:

CHIVA website
CHIVA provides information, guidance and support for professionals, parents and young people living with HIV and runs an annual support camp for HIV positive young people.

CHIPS – Collaborative HIV Paediatric Study
Aims to enhance the exchange of information and expertise between centres in order to promote standardised and high quality paediatrician-led care of all HIV-infected children in the UK and Ireland.

All CHIPS publications are here:
The PENTA-ID Network brings together key stakeholders in paediatric infectious disease, including researchers, clinicians, regulatory bodies, the pharmaceutical industry and patients and their families, to plan and carry out high quality clinical research and training.

Financial support

The UK-CAB receives unrestricted funding from some pharmaceutical companies towards the direct costs of holding four meetings each year. This funding supports the travel and accommodation costs for members to attend from outside London, plus the cost of catering.

The content, programme and agenda for meetings is decided by the UK-CAB steering group in consultation with the wider membership. Funding is unconnected to meeting content.

We believe that manufacturers who currently develop and market medicines have a responsibility to actively engage with advocacy organisations and that HIV positive people and their advocates should be able to directly question manufacturers about the safety and efficacy of their products and proposals for future research.

For a list of companies that support the UK-CAB please see the “about us” page.