Beyond being HIV-free: Time to survive & thrive? 4th HIV-Exposed Uninfected (HEU) Child and Adolescent Workshop Pre-conference Workshop. Sunday, 22 July 2018 Ute Feucht with Watsamon Jantarabenjakul and Gabriel Loni No conflicts of interest to declare

HIV-exposed uninfected children HEU= HIV-exposed uninfected children Very large numbers of affected children in high burden countries Children with varied HIV- and ART exposure

Early Childhood Development (ECD) & HEU First 1000 days HEU= Vulnerable group Preterm birth, LBW, differential feeding practices, HIV-affected households, etc Childhood development = Genetic blueprint + environment Window of opportunity during period of vulnerability Need for intervention Nurturing care framework Nurturing care framework already exists Need for interventional package like nurturing care framework is important for all children, but especially for vulnerable children like the HEU

ECD in HEU Some HIV-affected parents find nurturing care more challenging due to life events Example from Malawi B+ & Nurturing Care: Blending of implementation Paradigm shift needed: How to get families to go to health facilities when they are not sick Involve fathers Integration Scalability Can improve retention in care

Affected mother from Malawi: "My experience in managing my HIV status while also taking care of my children has been quite a challenge. I got my first child, my daughter, and when she was 1 year 4 months, I was so weak, I could not even lift her up, cuddling her (…), she was constantly in my mother’s care or my sister, that created a gap between us.” Bonding with her 2nd child disrupted due to illness of her 1st (HIV+) child “But because I was constantly taking care of my daughter who was sick, I didn’t have time to concentrate on my pregnancy (…) do everything that a mother could have done (…) that also created a gap between me in my son.“

HEU Adolescents: Psychosocial Implications First 1000 weeks Very high mental health morbidity Similar to adolescents living with HIV Any mental health diagnosis: 58% Very little data From 1st world countries Because of use as control group for HIV+ children “Invisible” at-risk population

Way forward: Unfinished business! Adolescent HEUs: We need to make them “visible” Need extra care, especially mental health care Full ramification of HIV/ART exposure is unknown HEU infants Move beyond narrow, short-term HIV targets Identify vulnerabilities and provide support to families Need to implement nurturing care Integration (HIV + ECD) has the potential to improve retention in care

Way forward: Unfinished business! Painting with water colours With purpose, but flowing Moving beyond strict (programmatic) lines What we do NOW will matter for the next generation Yellow Accompaniment Wassily Kandinsky Misty Morning Painter unknown

Acknowledgements: Contributors, session chairs, panel members Marissa Vicari Kate Powis Martina Penazzato Nigel Rollins Lisa Bohmer Steven Lye Bernadette Daelmans Alan Schooley Evelyn Udedi Shaffiq Essajee Clara Banya Lorraine Sherr Amy Slogrove Claude Ann Mellins Lucie Cluver Stephanie McCann Alexis Galloway Anurita Bains Rohan Hazra

HIV-free - Survive & Thrive We thank Kate Powis, Amy Slogrove and Daphnée Blanc for organising the workshop HIV-free - Survive & Thrive Feedback provided by Ute Feucht, Watsamon Jantarabenjakul and Gabriel Loni