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Enhancing the health and social wellbeing of children and young people living with HIV

CHIVA Conference 2021

Health Inequalities: The theme of our conference this year was health inequalities. This was chosen in line with the increased focus in recent months on inequalities more widely and reflected increased discussions with young people about the impacts of inequalities on them day to day.

We were keen that an international perspective could be included and delighted to be able to include fantastic speakers, Prof Linda Gail Bekker and Prof Allison Agwu

The messages from both were clear, we need to start with the adolescent and not the viral load. What services do they need? What are the impacts of inequalities on their lives? Intersectionality was a key concept, different inequalities need understanding together, they interweave. We need to go beyond health care to address young people’s needs which often sit within a complex social context. Impacts of poverty, racism, community and gender based violence were all explored and point to the need for distinct models of care for adolescents which are flexible enough to meet individual needs.

Dr Caroline Foster speaking about the UK experience from the 900 Clinic echoed these themes and discussed the unique experience of adolescents, requiring a distinct model of clinical care. Ease of access to clinic, being able to drop in, a one stop shop for all of their healthcare and support needs, strong relationships with the clinic team. Caroline highlighted some key indicators of later poorer outcomes in older adolescents- your CD4 count when you left paediatrics and ever having an AIDS diagnosis as a child. 

The CHIVA Youth Committee (CYC) chair spoke openly and honestly about her experiences of navigating clinical care as a child and then a young adult moving into adult care. The challenges of managing this while life is changing so much at this age, and mental health issues arising another stressor. She highlighted how strong relationships with clinic teams is really important , as is the support of wider professionals to help navigate the challenges and support with advocacy in clinics. The CYC Chair pointed to how having CHIVA staff at clinic appointments really helped her, especially when she found it difficult to talk about particular issues in her appointments.

The remaining morning sessions continued with these themes with Dr Annabel Sowemimo who presented a passionate and insightful talk on decolonising healthcare. Exploring how structural inequalities contribute to health injustice, and illustrating some of the history of medical racism which underpins much of the health inequalities and injustice which persists. Startling statistics such as black women being 5 times more likely to die in childbirth than white women, indicate how important Annabel’s talk was to include at our conference. She has written a book on this topic and more information can be found on the Decolonising Contraception website.

The CYC symposium followed Annabel with a powerful series of personal testimonies of experiences of inequalities and racism. The CYC members were incredibly courageous in their sharing of personal experiences of racism, discrimination in relation to disability, mental health and feeling unsafe when on the streets as young women with threats of sexual assault. Representing the voices of the male peers on the committee who couldn’t attend in person, they shared the stress and anxiety experienced, at so often being subject to Police stop and search as young black men. The CYC symposium is always a hugely important part of our conference. This year, their call to attention around the inequalities they face, were a reminder of what they bring with them to their consultations, and an insight into their lives, which may not always be appreciated when they are receiving medical care. 

Prof Adam Finn gave a detailed overview of COVID vaccines for children and young people. The science behind the vaccine development and the vaccine trials to date worldwide were presented. He addressed the complexities in making decisions around routine use of COVID vaccines for children in the general population in the UK and the emergence of data about rare side effects in young people in recent trials. However,  he resisted giving us an exclusive preview of the recommendations of the The Joint Committee on Vaccination and Immunisation (JCVI) for 12-16 year olds which was due to be published later that day!

Dr Alasdair Bamford presented an excellent update about many aspects of new developments in  antiretroviral therapy, results of recent drug trials in adults and children and a glimpse into new drugs under development. His presentation covered information about new formulations, dual therapy in adults (recommended for initial therapy  with certain caveats) and children (dual therapy not recommended for first line).  In addition he presented studies looking at the use  of long-acting injectables in adolescents and development of new classes of long-acting antiretrovirals in the pipeline, such as capsid inhibitors and the nucleoside analogue reverse transcriptase translocation inhibitor (NRTTI) and Nonnucleoside analogue reverse transcriptase inhibitors (NNRTIs). 

A new part to the conference, and an opportunity to network and interact in smaller groups, workshops this year focused on health and well-being. It was important to acknowledge the challenges of children, young people, families and healthcare professionals in recent times. Three workshops were delivered with options at the conference venue and online. ‘Holding difficult stories: a compassionate approach to working with young people and complexity’ was explored with Dr Michelle Croston (Senior Lecturer in Nursing) and Dr Katy Bourne (Clinical Psychologist). Dr Jackie Nicholson, Dr Tomas Campbell and Dr Kristina Fenn (Clinical Psychologists) explored - ‘Supporting children and young people with wellbeing - A toolkit for use in the HIV clinic setting by health care professionals. Attendees were delighted to be able to take away a toolkit to use in practice from the facilitators. Delegates attending the workshop with Dr Debbie Levitt (Chartered Psychologist) on ‘The COVID experience - just keep swimming?’ enjoyed being part of supportive discussions and sharing experiences. 

Feedback identified the workshops as interesting, engaging and helpful. Hopefully workshops will become part of future conference programmes; watch this space! Go on … try the star breathing below :-)

 

Dr Hermione Lyall presented the story of CHIPS. The Collaborative Paediatric HIV Study is a world leading study that has collected data on children living with HIV in the UK. This began with a national study of HIV in childhood in 1986 and in pregnancy in 1989 which Pat Tookey and Catherine Peckham were instrumental in. CHIPS was established in 2000. It has provided a beacon to help us support children with HIV. CHIPS teams have worked alongside EPICC and PENTA collaborations to share knowledge and improve standards of care. Research and findings linked to CHIPS have been instrumental in the care of children and young people with HIV and this should be celebrated. 

More recently NHS England have withdrawn funding from CHIPS and the future cohort study will be known as CHARS (Children’s HIV and AIDS Reporting System). Teams will submit their data electronically via ISOSS. Although data collected will link to specific information this will involve joint working with the HARS (HIV and AIDS Reporting System for Adults)  team which is funded by Public Health England. This will result in seamless reporting from childhood through adulthood. Keep filling in your forms, this really matters. 

Audits and Abstracts

Professor Tilly Pillay (CHIVA steering committee member) updated us on future audits. CHIVA are leading an audit that will look at Looked After Children who are accessing HIV care in the UK. The Don’t Forget the Children Audit from 2008 will be revisited. The third CHIVA audit running in the next year is the Transition Audit which was last completed in 2011. We are looking forward to the findings which we hope will positively shape support and service delivery for children and young people. 

The call for abstracts for the conference resulted in submissions of important information and exciting research linked to children and young people’s HIV care and experiences. Four abstracts were selected for oral presentations at conference and the remaining authors were invited to submit posters for conference. 

Dr Anna Turkova was awarded best oral research presentation for her talk on Dolutegravir based ART is superior to NNRTI/PI based ART in infants, children and adolescents. The best poster on the day was awarded to the young adult team Guy’s and St Thomas’s Hospital for their data on The experience of using injectables in young adults.

Thank you to everyone that shared their research at conference and many thanks to all delegates who participated in voting on the day.