SPAIIN : education & training day

1. SPAIIN : education & training day Objectives When & how to test for HIV in a child in Scotland in 2011 Adolescents & HIV: understanding the issues around adolescents & HIV and how to successfully transition PID: how to recognise, when, how and what to test, and when to refer/ask for advice

2. Thanks Abbott ViiV

3. HIV testing – when & how to test Epidemiological indications Conor Doherty Clinical presentation Rosie Hague Testing Kate Templeton Scenario

4. Epidemiology

5. HPA 2010 • 86,500 living with HIV (1.4/1000) • 25% unaware • 6,630 new cases – 54% heterosexual, 42% MSMHeterosexual cases - 63% Black Africans - 68% acquired abroad

6. HIV and AIDS New Diagnoses and Deaths

7. *Sub-Saharan Africa represented the presumed geographical area of exposure for 422/551 cumulative number of heterosexually infected women in Scotland infected outwith Scotland

8. Estimated number of children (<15 years) newly infected with HIV, 2008 Eastern Europe & Central Asia 3700 [1700 – 6000] Western & Central Europe <100 [<100 – <200] North America <100 [<100 – <200] East Asia 3200 [2100 – 4500] Middle East&North Africa 4600 [2300 – 7500] Caribbean 2300 [1400 – 3400] South & South-East Asia 18 000 [11 000 – 25 000] Sub-Saharan Africa 390 000 [210 000 – 570 000] Latin America 6900 [4200 – 9700] Oceania <500 [<500 –<1000] Total: 430 000 (240 000 – 610 000)

9. HIV positive children / adolescents in the UK Cumulative To date 1700 (<16y of age) 95% vertically infected 50% born abroad Currently 1000 in paediatric follow-up 80 newly diagnosed in 2007 - 60% born abroad

10. HIV & pregnancy…but don’t forget the non vertically acquired infection….

11. HIV & Pregnancy - UK • Overall 2.2 /1000 pregnant women infected - London 3.9 - England 1.43 - Scotland 0.9UK born women 0.46 • 11,429 children born to HIV infected women in the UK - 883 (8%) infected • 74 children diagnosed in UK in 2009 - 68% born abroad

12. Universal antenatal screening – late 2002 in Scotland (HPS) Current Glasgow antenatal screening rate: 95% (Health Protection Scotland)

13. Interventions to Reduce Perinatal Transmission of HIV (Courtesy of Hermione Lyall) • InterventionTx rate • None 25 - 30% • Avoid Breast feeding 12 - 15% • AZT mono Rx (076) 6 - 8% • Pre labour CS + / - ART 2% • Pre labour CS + AZT mono <2% • Combo Rx (VL < 50) remains ~ 1%

14. ? numbers of UK born children HIV infected children • 772,000 infants born in the UK in 2007. • 1,230 had mothers with diagnosed HIV. -1% likely to be infected . - large majority diagnosed within a year • 70–120 undiagnosed women probably gave birth. - 30% of their infants are likely to be infected - 40% of infected infants diagnosed within a year. - HIV-positive children can survive into their teens before developing symptoms - Two-thirds of HIV-positive infants in the UK are born to HIV- positive women who remain undiagnosed throughout pregnancy

15. Why test?

16. HAART & prognosis in children Gibb, BMJ 2003

17. Infants : Direct effects on CNS • Immature brain – presents as static/progressive encephalopathy • Prevalence of HIV related CNS disease pre HAART 20-50% - classic triad of developmental delay (motor & speech), microcephaly, & motor deficit (spastic quadriplegia/diplegia or hypotonia) - more advanced disease – higher rates but CNS involvement in under 1’s can occur before significant immunosuppression - may be presenting feature of HIV (18% of AIDS presentations)-highest incident rate in first 2 years of life

18. Audit of perinatal HIV transmissions in England (2002-2005) • 3400 infants born to HIV infected mothers - 87 infected children - no transmissions from optimally managed mothers with UVL at delivery30% - mothers diagnosed at/before delivery - 2 deaths and 20% c AIDS defining illness70% - mothers undiagnosed (15% seroconversion) - 9 deaths and 60% c AIDS defining illness

19. Testing – the epidemiological indications • infants and children whatever their age where the mother has HIV, or may have died of an HIV-associated condition • infants born to mothers known to have HIV in pregnancy • infants born to mothers who have refused an HIV test in pregnancy • infants and children who are presented for fostering/adoption where there is any risk of blood-borne infections • infants and children newly arrived in the UK from high-prevalence areas (they may be unaccompanied minors) • infants and children with signs and symptoms consistent with an HIV diagnosis • infants and children being screened for a congenital immunodeficiency

20. … a negative antenatal HIV test does not rule out a diagnosis of paediatric HIV………..

21. ‘Don’t forget the children’ • Consensus CHIVA, BHIVA and BASHH statement 2009 MISSION STATEMENT The HIV status of all the children of known HIV-positive adults in the UK should be known as a matter of clinical urgency

22. Recommendations for standards of care (2009) • All adult HIV services, including statutory and voluntary, as well as NHS and social services, must have protocols and procedures in place to ensure that all children of HIV-positive parents are tested for HIV. • All HIV units will need to perform a ‘look back’ exercise to establish the HIV status of any children whose HIV-positive parents attend that service. • All new HIV-positive patients attending adult HIV services should have any childrenidentified, tested and the information clearly documented. • There need to be joint protocols in place between health and social care to manage those cases where parents initially refuse, in order that these cases may be dealt with sensitively and appropriately. A clear pathway of referral needs to be identified within themultidisciplinary team. • All healthcare professionals have a duty to ensure the safety of children, so if the child is persistently being put at risk by not being tested then there is a clear threshold for referral to child safeguarding services.

23. Rosie The clinical indications for testing ……….

25. BHIVA 2008 – when to test Who to consider for HIV testing infants and children whatever their age where the mother has HIV, or may have died of an HIV-associated condition infants born to mothers known to have HIV in pregnancy infants born to mothers who have refused an HIV test in pregnancy infants and children who are presented for fostering/adoption where there is any risk of blood-borne infections infants and children newly arrived in the UK from high-prevalence areas (they may be unaccompanied minors) infants and children with signs and symptoms consistent with an HIV diagnosis infants and children being screened for a congenital immunodeficiency

26. How to test

27. Scenario: OPD • Letter from adult services ‘Please see this well 14 y old whose mother presented with PCP 9 months ago and was diagnosed with HIV. Mother & son in UK for 1 year (asylum seekers).Mum very reluctant to have son tested and took a lot of persuasion to agree to referral……’

28. Question Why is mum reluctant to test??

29. Mother: reasons not to treat! • Disclosure of her own diagnosis • Fear of effect of positive result • Son ‘well’

30. Question • Is he well? • Is the teenager competent to consent to testing? • What stress is this teenager under i.e. can he handle a positive result?

31. Gillick competency/Fraser guidelines ‘parental right to determine whether their…child below the age of 16 will have medical treatment terminates if and when the child achieves a sufficient understanding and intelligence to enable him or her to understand fully what is proposed’Lord Scarman – House of Lords judementGillick v West Norfolk and Wisbech Area Health Authority (1985) Is child competent to make own decisions & understand the implications of those decisions?

32. Adolescent stressors! • Teenage life! • New migrant! • Language • Cultural • Educational • Migration relatedAddition of a HIV diagnosis!!!!!!!!!!!!!!!

33. Question • If mum refuses to consent to test what does the ‘law’ say?

34. Parental rights ( Domestic law and European Convention) • Medical confidentiality • Right to life i.e. state should protect life • Right to respect for private life and personal privacy • To make their own decisions regarding their children’s medical treatment • To enjoy intimate family life with a child • To enjoy a child’s company

35. Adolescent / child’s rights • Medical confidentiality • Right to life i.e. state should protect life • Right to respect for private life and personal privacy Children’s Act 1989 • ‘best interests of the child’ • ‘wherever possible children should be brought up and cared for within their own families’

36. Legal / ethical issues • The welfare and safety of the child are paramount. • Both parent and child have rights protected by UK law: e.g. confidentiality of medical information and the right to life. • If an older child is deemed competent to consent on their own behalf to a test, they must be fully and appropriately informed of all relevant information prior to giving their consent. • ‘work with the parents’ to negotiate the testing of children and find mutually acceptable ways forward, preserving the family unit wherever possible.

37. The ‘Parent’s Pathway’: Supporting HIV positive parents in testing their children (2009)

38. Resources http://www.chiva.org.uk/professionals/health/guidelines/testing/hiv-testing.html#under16