Dr Melinda Tenant-Flowers

1. 3rd Annual Conference of the Children’s HIV Association ‘Young People and HIV: Back to the Future’ Dr Melinda Tenant-Flowers King’s College Hospital NHS Trust, London Friday 15 May, The Bridgewater Hall, Manchester

2. Contributors Chair: Melinda Tenant-Flowers. King’s College Hospital London. Consultant GUM/HIV Colin Ball. King’s College Hospital London. Consultant Paediatrics / HIV Fiona Boag – Chelsea and Westminster Hospital NHS Foundation Trust, Imperial, London. Consultant  GUM/HIV Caroline Foster – St Mary’s Hospital NHS Foundation Trust, Imperial, London. Consultant Paediatrics / HIV Eva Jungmann – Archway Sexual Health Centre, Camden and Islington Primary Care Trust, London, Consultant GUM/HIV Elaine Pearson Scott – Positive Parenting Children (PPC) (Lambeth) Maria Phelan – Children and Young people HIV Network Coordinator, National Children, s Bureau Katia Prime – St George’s Hospital Trust, London, Consultant GUM/HIV Ella Sherlock – Clinical Psychologist HIV Child and Family Psychology Service CASCAID (Lewisham and Southwark) Rebecca Wilkins – Community Matron, Diabetes Centre Newbury Park Redbridge PCT Conflict of Interest / Competing Interest None declared

3. Contents Definition of Adolescence Definition of Sexual Health Aim and scope of Guidance Existing Guidelines Contents of Guidance How to Talk What to say Epidemiology HIV transmission risk Criminalisation Information on Genital infections and STIs Common presentations of STIs Preventing unwanted pregnancy Next steps Stakeholders - Potential

4. Definition of Adolescence Various definitions in literature Relate to age, growth or the onset of puberty. Ages 10 to 20 years-old Different epidemiological datasets Health Protection data on Young People and Sexually Transmitted infections collects data on 16-24 year-olds UK Collaborative HIV in Paediatrics (CHIPS) data defines adolescence as commencing at age 12 years-old Puberty and sexual activity commence at any time from 10 years old in UK born children Below the age at which adolescents are deemed capable of legally consenting to sex The term adolescent used in this guidance to denote young people aged 10-20 years old.

5. Definition of Sexual and Reproductive Health WHO defines sexual and reproductive health as ‘A state of physical, emotional, mental and social well being related to sexuality, NOT merely the absence of disease, dysfunction or infirmity’ Sexual and Reproductive Health services aim to prevent sexually transmitted infections (STIs) and unwanted pregnancies as well as screen for, diagnose and manage STIs and their sequelae to minimise morbidity and mortality

6. Existing Guidelines Excellent evidence-based guidelines on adolescent sexual and reproductive health (SRH) already exist: BASHH Standards for comprehensive sexual health services for young people under 25 years (2002) FSRH Guidance Contraceptive choices for young people (2004) BASHH United Kingdom National Guideline on the Sexual Health of People with HIV: Sexually Transmitted Infections (2006) BASHH UK Guideline for the use of post-exposure prophylaxis (PEP) for HIV following sexual exposure (2006) BASHH national Guidelines on Consultations requiring Sexual History Taking (2006) FSRH BASHH Guidance The management of women of reproductive age attending non-genitourinary medicine settings complaining of vaginal discharge (2006) CHIVA Growing Up, Gaining Independence Principles for Transition of HIV Care (2007) CHIVA Practice Guidance on Talking to Children about their HIV Diagnosis (2007) BHIVA BASHH FRSH UK guidelines for the management of sexual and reproductive health (SRH) of people living with HIV infection (2008) BHIVA CHIVA Guidelines for the management of HIV infection in pregnant women (2008) RCPCH Guidelines on Child Sexual Abuse (2008) BASHH UK National Guidelines on the management of Sexually Transmitted Infections and related conditions in Children and Young People (Final draft out for consultation 2008-2009) CHIVA Guidelines on HPV vaccination in HIV Infected Adolescents (2009 for consultation)

7. Aim of Guidance Provide guidance and knowledge for Paediatric Healthcare Professionals (PHCP) managing adolescents with HIV Enable them to answer questions put to them by adolescents about Sexual and Reproductive health Enable them to start discussions about sexual and reproductive health (SRH) Be able to inform adolescents what to expect from SRH Services Provide information for PHCP on where to access existing guidelines

8. Aim of Guidance Some PHCP may find themselves caring for adolescents with sexually transmitted HIV For this group, the correct messages regarding SRH are still vital HIV may have been sexually acquired through heterosexual or same gender sex with other males (MSM) This guidance will also be of interest to PHCP caring for adolescents without HIV, who are about to become, or already are, sexually active

9. Aim of Guidance NOT intended to retrain PHCP as SRH experts To inform their discussions with adolescents to enable them to answer basic questions about sexually transmitted infections (STIs), Sexual Health and conception / contraception-related issues or initiate a discussion about their SRH needs Recognise that PHCP will refer adolescents to their colleagues in Genitourinary Medicine (GUM) / SRH whenever possible However, PHCP will, in many cases, have been caring for these adolescents for many years throughout their childhood Therefore, in some cases, adolescents may ask their PHCP first about SRH matters because of the long term and trusting relationship that has developed

10. Aim of Guidance Guide PHCP through a timeline for discussing SRH issues For adolescents with vertically transmitted HIV, this process would normally start as they approach the time when their HIV diagnosis is disclosed to them as part of the preparation for transition to adult services Appropriate language Main topics to be covered Relevant ethical, legal and confidentiality concerns and challenges experienced by HIV-infected adolescents in relation to SRH

11. Guidance Contents The Guidance is split into two main sections: How to talk to adolescents about SRH Most challenging? 2. Facts about SRH Appendices References Sources of Information

12. Contents How to talk to Adolescents about SRH Sexual Health Education needs of Adolescents Sexual Development and Relationships Sex and Relationships Negotiating Sexual relationships HIV transmission risks Disclosure of HIV status - Who to tell, when and why HIV disclosure and Criminalisation Consent and Confidentiality The Sexual Offences Act 2003 Assessing Fraser (Gillick) Competence Talking about Sex Talking about Sexual and Reproductive Health STI and Conception risks Sexual History taking Psychosocial issues and services available Sexual Assault.

13. Contents Facts about SRH Epidemiology of Sexual Health in Adolescents in the UK 2009 Service provision for STI screening and contraception / conception advice Common non-sexually acquired infections STIs and their screening, diagnosis, morbidity, management and prevention Partner notification Common presentations of genital infections - non sexually acquired and sexually transmitted Interaction between HIV transmission and STIs Cervical screening Contraception including emergency contraception and long acting reversible contraception (LARC) Conception, fertility, pregnancy and STIs Drug interactions between STI treatment and contraception and combination antiretroviral HIV therapy (CART)

14. How to talk When young people were asked what they wanted from an adult when talking about sex, their top three requirements were someone who was: Non-judgemental Had correct information Maintained confidentiality

15. What to say Young people need age/developmentally appropriate and up to date information on topics including: Puberty Relationships Sex Contraception STIs HIV transmission -“protecting themselves and others” Condom use - negotiation and condom failure Partner disclosure PEPSE Emergency contraception Fertility Pregnancy Mother-to-child transmission Legal issues.

16. Epidemiology CHIPS Data end September 2008 - 90% children diagnosed in UK N =1495 97% infected perinatally 75% Black African Post CART median age over 11 years. 1147 current paediatric follow up 646 (56%) aged 10 years + 345 (30%) aged 13 years + 170 (11%) transferred adult services median age17years HPA data Route of infection 16-24 horizontal transmission 48% heterosexual (Black Africans infected abroad) 48% MSM (white infected in UK)

17. Epidemiology 25%of UK adolescents have had sex before their 16th birthday Boys report earlier sexual debut than girls and younger adolescents are less likely to use a condom at first sex than older adolescents Despite a downward trend since 1998, the UK has the highest rate of teenage pregnancy in Western Europe Conception rate in England of 41 per 1000 girls aged 15-17 during 2007, half of which ended in legal termination 2007 HPA data - 50% all STI diagnoses diagnosed in 16-24 year olds 65% all chlamydia 50% all gonorrhoea 50% all genital warts New diagnoses chlamydia in 16-19 year olds doubled in last 10 years

18. HIV Transmission Risk KNOWN HIV positive and risk of transmission Varghese 2002

19. HIV Transmission Risk What increases the risk of transmission? High plasma HIV viral load HIV seroconversion Advanced HIV disease Concomitant sexually transmitted infections Menstruation What decreases the risk of transmission? Condoms Circumcision CART (lowers viral load) Post exposure prophylaxis (PEPSE) Safer sex

20. Criminalisation HIV positive adolescents do not need to disclose their status to sexual partners as long as they are having protected sex If HIV positive young person is having unprotected sex or there has been a risk of exposure (e.g condom splits) they need to disclose their HIV status to that partner Currently there is no specific legal guidance around HIV transmission for those under 16 years of age (Consultation with the CPS is in process) Prosecution requires the following: Transmission of HIV must have occurred - having unprotected sex is itself not a crime The young person needs to be aware of their status The young person needs to have engaged in a risky behaviour The young person needs to understand the risks of transmission If young people are not given this knowledge and then are involved in activities that may be thought of as illegal it could be that those who have neglected to inform them are vulnerable to prosecution

21. What to say HIV infection can be transmitted to sexual partners

22. Common presentations of STIs ASYMPTOMATIC Discharge Abdominal pain Abnormal vaginal bleeding Genital lumps

23. Genital Infection and STI Information Genital Infections NOT sexually transmitted - COMMON Candida Bacterial vaginosis Sexually Transmitted Infections Chlamydia Gonorrhoea Syphilis Herpes simplex virus Human papilloma virus Hepatitis A/B

24. Contraception and Conception Preventing Unwanted Pregnancy Emergency contraception Long Acting Reversible Contraception (LARC) Other Safe Conception and Pregnancy

25. Next Steps Other Proposed Stakeholders BHIVA, BASHH, FSRH Consultation CHIVA website

26. What we need now These guidelines need feedback and consultation Feedback from all paediatric HCP’s Feedback from young people Consultation will be facilitated through the CHIVA website

27. Acknowledgements Thank you to everyone in the HYPNET working party!