C Foster, A Judd, H Lyall, T Dunn, K Doerholt, P Tookey, D Gibb For Young people with perinatally acquired HIV: a Transitioning UK cohort.

Objectives To describe in adolescents (age yrs) in CHIPS : demographic clinical immunological virological ART history Resistance data

Data Collection 2006 CHIPS is a collaboration between the National Study of HIV in Pregnancy and Childhood (NSHPC), 52 clinical centres in the UK and Ireland and the MRC Clinical Trials Unit CHIPS includes all children in follow-up since 1996 in the 52 participating centres Annual prospective follow up since 2000 with prior retrospective data collection

Demographics (n=489) 489 (44%) of 1102 perinatally infected children in CHIPS are aged 10 yrs or above. Of these: 52% female 74% are of Black African origin 56% born outside the UK/Ireland Median age of presentation 1.3yr (UK born), 8.1yrs (abroad) Median duration of follow up 11yr and 5.3yrs

78%London 2% Scotland 12% Rest of England 8% Ireland Case Distribution within UK & Ireland

Presentation and “ Late presenters ” 110 (22%) presented age % with AIDS 43% mild symptoms CDC A/B 42% post diagnosis of family member 2 teenage pregnancies at antenatal screening Screen all siblings / offspring even the well teenagers

Disease Progression 9 young people died after their 10th birthday; 7 attributable to HIV, one to ARVs.

ART history * 2 received ZDV monotherapy in pregnancy *

ARVs Median length on ARVs 4.5yrs (IQR ) 78% NNRTIs 63% PIs 45% Triple class experienced 16% stopped ARVs: STI, poor adherence, refusal

Immunology and virology Median CD4 count (IQR) HIV VL <400 rna c/ml HAART start (n=375) 235 (94-468) 12% (6-19%) 6 months427 ( )174 (54%) 12 months507 ( )156 (51%) Latest follow up on HAART (n=312)225 (72%) ARV Naive (n=97)461 ( )7 (6%) At latest follow up 55 (11%) have CD4 counts <200, 74% on HAART

Resistance (Toxicity 2008) 120 (25%) young people ; total 216 assays 23 prior to HAART start: 2 had baseline NRTI mutations 97 had assays after HAART start -median 3yrs after start -85 triple class experienced 17 dual class resistance 42 triple class resistance 8.6% of cohort N=97 Wild type11 M184I/V43 NRTI other59 NNRTI64 PI major30

Transfer to adult care 67 (14%) transferred median age 17.0 yrs ( ) Median duration of follow up 10 yrs (IQR ) 40% have had an AIDS diagnosis 48% triple class experienced, 13% naive On HAART 52% had VL <400 c/ml, median CD4 296 Resistance (n=23): 8 dual, 4 triple class 25% CD4 <200 c/ml

Planning service provision Almost half of children in the CHIPS cohort have survived to adolescence BUT-1/3 have had an AIDS diagnosis -1/3 are triple class experienced -1/3 on HAART have detectable VL HOWEVER -1/5 are treatment naive -1/5 are already with you

We would like to thank the staff, families and infants from the 52 CHIPS centres CHIPS Steering Committee: Karina Butler, Katja Doerholt, David Dunn, Trinh Duong, Di Gibb, Hermione Lyall, Janet Masters, Vas Novelli, Catherine Peckham, Andrew Riordan, Mike Sharland, Pat Tookey, Gillian Wait, Gareth Tudor-Williams National Study of HIV in Pregnancy and Childhood, Institute of Child Health, London: Pat Tookey, Janet Masters, Catherine Peckham Medical Research Council Clinical Trials Unit: Di Gibb, Trinh Duong, Debbie Johnson, David Dunn, Katja Doerholt, Gill Wait, Sarah Walker We also thank the Department of Health, UK for all their support. CHIPS receives also support from Bristol Myers Squibb, Boehringer-Ingelheim, GlaxoSmithKline, Roche and Abbott & Gilead Acknowledgements

Coming to a Clinic near You Coming to a Clinic near You Be very afraid Deeply disillusioned. Complex Multidisciplinary needs. Pampered by paediatricians. Extreme attitude. Resistant virus. ‘In clinic no-one can hear you scream’. ADULTS only