1. Dr Emma Rutland Consultant in GU & HIV Medicine
HIV & Children
Dr Emma Rutland
Consultant in GU & HIV Medicine

2. Prevalence & demographics
Adult HIV
Paediatric HIV
Consequences of undiagnosed HIV
Testing
Paediatric HIV management

3. Prevalence & demographics
Adult HIV
Paediatric HIV
Consequences of undiagnosed HIV
Testing
Paediatric HIV management

4. HIV in the UK: how big a problem?
Number of HIV+ve living in UK = 91,500*
24% of HIV+ve people are unaware of their infection*
*HPA: HIV in the united kingdom; 2011 report.

5. HPA: HIV in the united kingdom; 2010 report. http://www.hpa.org.uk

6. Estimated number of people living with HIV infection: United Kingdom, 2010
Total with HIV = 91,500 (85,400 − 99,000) Total diagnosed = 69,250 (67,800 − 70,800) Total undiagnosed = 22,200 (16,350 − 29,650)
In 2010, there were an estimated 91,500 people living with HIV infection (both diagnosed and undiagnosed) in the UK. Overall one quarter were estimated to be unaware of their HIV infection.
HPA: HIV in the UK; 2010 report.

7. Prevalence rates of HIV: United Kingdom, 2010
People with diagnosed or undiagnosed HIV infection/1000 population
All
1.5
Men
2.0
Women
0.9
MSM 47
Black African
In the UK, the estimated prevalence of HIV in 2010 was 1.5 per 1,000 (95% C.I. 1.4 – 1.6) population of all ages (2.0 per 1,000 [1.8 – 2.2] men and 0.9 per 1,000 [0.9 – 1.0] women).
The UK has an HIV prevalence similar to other Western European countries, such as Ireland (2 per 1,000), the Netherlands (2 per 1,000), and Germany (1 per 1,000), and lower than Eastern and Southern European countries such as Latvia (7 per 1,000), Portugal (6 per 1,000) and Spain (4 per 1,000), where the epidemic is driven primarily by injecting drug use.
HIV prevalence is high among MSM in the UK. Assuming that 3.4% of the adult male population in the UK are MSM, one in 20 gay men are living with HIV nationally (47 per 1,000 population), and one in 11 in London (87 per 1,000).
The black African group excludes data from Scotland.
HPA: HIV in the UK; 2010 report.

8. Distribution of people receiving HIV care by age group: United Kingdom, 2001 and 2010
In 2010, there were 69,424 people living with a diagnosed HIV infection and receiving HIV care in the UK, representing a nearly three-fold increase since 2001 (26,088). The age distribution of people receiving HIV care is changing, as older adults living with HIV increase both in number and proportion. In 2010, one in five (21%, 14,266) adults were aged 50 years or older, compared with one in nine (11%, 2,979) in This increase is due to effective therapy improving survival among the diagnosed HIV-infected population, as well as continued transmission at older ages.
HPA: HIV in the UK; 2010 report.

9. MTCT
No intervention =
*Townsend et al AIDS 2008, 22:973-81

10. MTCT
No intervention = 25.6%
*Townsend et al AIDS 2008, 22:973-81

11. MTCT No intervention = 25.6% Breast feeding =
*Townsend et al AIDS 2008, 22:973-81

12. MTCT No intervention = 25.6% Breast feeding = 14%
*Townsend et al AIDS 2008, 22:973-81

13. MTCT No intervention = 25.6% Breast feeding = 14%
Transmission rates UK and Ireland *
Overall MTCT = % (n=5151)
AZT monotherapy & Caesarean section = 0% (n=464)
HAART & planned Caesarean section = 0.7% (n=2286)
HAART & planned vaginal delivery = 0.7% (n=559)
HAART & VL<50 copies/mL = % (n=2117)
(= 3 transmissions. 2 of these babies had evidence of in utero transmission)
*Townsend et al AIDS 2008, 22:973-81

14. CHIPS Cohort (up to March 2011)
N = 1190 children who are alive and in active follow-up
48% born UK/Ireland, 51% born abroad
Ethnicity:
Diagnosis of maternal infection (N=1158 vertically infected): n %
White 70
(6%)
Black African
944
(79%)
Black other 14
(1%)
Indian SC 17
Mixed
123
(10%)
Other 13
Not known 9 n %
Known after delivery
977
(84%)
Known before delivery
146
(13%)
Not known 35
(3%)
National Study of HIV in pregnancy and Childhood
Collaborative HIV Paediatric study

15. Age at diagnosis
Most HIV infected children will become ill in the 1-2 years of life.
However, a significant number of young people with vertically acquired HIV infection are surviving childhood, without treatment, to be diagnosed in adolescence.

16. Example of natural progression of HIV infection in an adult individual over time
1000
500
200
Diagnosis can be made at any time
CD4 Count (cells/mm3)
AIDS event and diagnosis becomes increasingly likely
Both AIDS and low CD4 counts are markers of long-standing infection (prior to treatment)
This graph shows how an HIV infection might progress in an individual over time without treatment.
The horizontal axis shows the time scale in years and the vertical axis shows the CD4 cell count per mm3 of peripheral blood. The blue line represents the CD4 cell count and shows how this count progressively may decline over time. The rate of decline may vary significantly between individuals.
A diagnosis of HIV infection may be made at any time from soon after infection to post-mortem investigations. AIDS-defining illnesses become increasingly likely as infection progresses and as CD4 cell counts fall.
Therefore, both AIDS and low CD4 counts are markers of long-standing infection. CD4 counts of 200 cells/mm3 are the recommended threshold for starting therapy because patients with CD4 counts < 200 when starting HAART have a substantially higher risk of progression to AIDS and death.
(weeks) (years)
Time Post Infection
Data source: Health Protection Agency CD4 surveillance

17. Age at diagnosis
2009 analysis of children diagnosed >13 years old in UK:
42 young people were located
20% were at an advanced stage of disease at diagnosis
50% had CD4 <200 cells/μl
50% were asymptomatic
Judd A, Ferrand R, Jungmann E et al. Vertically acquired HIV diagnosed in adolescence and early adulthood in the United
Kingdom and Ireland: findings from national surveillance. HIV Med, 2009, 10, 253–256.

18. Age/year at first presentation to medical services in the UK/Ireland (N=1704*)
Up to Total At birth 150 (10%) 6 (10%) 6 (10%) 0 (0%) 162 (10%) <1 yrs 330 (21%) 8 (13%) 4 (6%) 2 (8%) 344 (20%) 1-4 yrs 473 (30%) 15 (24%) 11 (18%) 3 (13%) 502 (29%) 5-9 yrs 391 (25%) 11 (18%) 17 (27%) 5 (21%) 424 (25%) >=10 yrs 212 (14%) 22 (35%) 24 (39%) 14 (58%) 272 (16%) Total 1556 (100%) 62 (100%) 62 (100%) 24 (100%) 1704 (100%)
* Includes all children (those still in follow-up and those who have died, lost to follow-up, left the UK & Ireland or transferred to adult care)
National Study of HIV in pregnancy and Childhood
Collaborative HIV Paediatric study

19. Age/year at first presentation to medical services in the UK/Ireland (N=1704*)
Up to Total At birth 150 (10%) 6 (10%) 6 (10%) 0 (0%) 162 (10%) <1 yrs 330 (21%) 8 (13%) 4 (6%) 2 (8%) 344 (20%) 1-4 yrs 473 (30%) 15 (24%) 11 (18%) 3 (13%) 502 (29%) 5-9 yrs 391 (25%) 11 (18%) 17 (27%) 5 (21%) 424 (25%) >=10 yrs 212 (14%) 22 (35%) 24 (39%) 14 (58%) 272 (16%) Total 1556 (100%) 62 (100%) 62 (100%) 24 (100%) 1704 (100%)
* Includes all children (those still in follow-up and those who have died, lost to follow-up, left the UK & Ireland or transferred to adult care)
National Study of HIV in pregnancy and Childhood
Collaborative HIV Paediatric study

20. Prevalence & demographics
Adult HIV
Paediatric HIV
Consequences of undiagnosed HIV
Testing
Paediatric HIV management

21. The consequences of undiagnosed HIV in children
Increased morbidity and mortality (particularly high risk of rapid HIV progression and death in infancy)
Increased admissions, including ITU and transfer to specialist centres
Increased health care related costs
Poorer response to antiretroviral medication
Public health issue of onward transmission

23. Prevalence & demographics
Adult HIV
Paediatric HIV
Consequences of undiagnosed HIV
Testing
Paediatric HIV management

24. These guidelines are intended to facilitate an increase in HIV testing in all healthcare settings as recommended by the UK’s Chief Medical Officers and Chief Nursing Officers [1–4] in order to reduce the proportion of individuals with undiagnosed HIV infection, with the aim of benefiting both individual and public health. Misconceptions remain regarding HIV testing that hinder increased testing. In particular, many clinicians believe that lengthy pre-test counselling is required prior to testing. These guidelines provide the information needed to enable any clinician to perform an HIV test within good clinical practice and encourage ’normalisation‘ of HIV testing.

25. Who to test
All children where a parent or sibling is known to have HIV or may have died of an HIV associated condition
Where no documentation of the childʼs previous negative HIV test result is provided
Children with signs and symptoms consistent with an HIV diagnosis

26. Clinical Indicator diseases for paediatric HIV infection
HIV testing guidelines 2008

27. Who to test
All children where a parent or sibling is known to have HIV or may have died of an HIV associated condition
Children whose father has HIV and motherʼs HIV status is unknown.
Where no documentation of the childʼs previous negative HIV test result is provided
Children with signs and symptoms consistent with an HIV diagnosis
Children being investigated for a congenital immunodeficiency
Children newly arrived in the UK from high-prevalence areas (they may be unaccompanied minors)
Children who are presented for fostering/adoption where there is any risk of blood borne infections.
Children at risk of non-vertically acquired infection including cases of sexual abuse

28. Barriers to testing - Parents
The child is well (perceived as incompatible with HIV infection)
The parent may be newly diagnosed and not fully accepting their own diagnosis.
Fear of disclosure of own status
Fear of rejection from children / partner
Parental experience of / or perception of stigma
The inability to cope with a positive diagnosis
The fear of feeling guilty if the child was diagnosed positive

29. Barriers to HIV testing – health care professionals
Perception that teenage children would have presented symptomatically by now
Lack of experience with HIV, lack of confidence
Not considering it in the differential diagnosis
Not considering child at risk
Concerns about ‘making judgements’
Fear of having to give positive result
Concerns about confidentiality, child protection issues
Lack of incentives to test

30. Timeline for testing The Asymptomatic child
6-12 months from initial discussion with parents before referral to social services
Parents will have to engage with relevant healthcare services (e.g. GP, Paediatric HIV Team, HIV counsellor..)
The acutely ill / symptomatic child.
Immediate testing required
Discussion with local specialist paediatric services
Young infants (0–1 year)
Timescale is more urgent as the risk of disease progression in the first year of life is high.
For sexually active young people
The possibility of onward transmission makes testing urgent

31. Consent to test Consent to testing: infants and younger children
Consent required from person with parental responsibility
Full disclosure of parents HIV diagnosis not always appropriate or necessary
Consent to testing: older children
Older children may consent if they are considered to be Gillick competent
Can be challenging if the parent does not want to disclose their diagnosis
Parents should strongly be encouraged to discuss the test with their child
Work with the parents to find a way forward
A plausible explanation could be; ‘as you were born abroad, we would like to test you for a variety of bloodborne viruses which are more common where you were born, such as hepatitis B (the importance of that is that it can affect your liver); HIV (which can be treated); and a full blood count (to see if you’re anaemic)’.

32. Pre-test discussion – older competent child
Benefits for testing (prognosis, treatment available in UK, risks of transmission, )
Consequences for not testing (i.e. risks of becoming unwell, death)
When possible, a full history of childʼs health including birth and country of origin, breastfeeding, past medical history, transfusions, etc
Any concerns raised by the family (e.g. disclosure to the child or partner, fears of positive result, family issues…)
Details of how the result will be given
Document in the patients notes with any relevant discussion
Written consent from patient is unnecessary

33. Which test to use?
Children < 18 months should be tested for genomic evidence of HIV by PCR
Children > 18 months should have an HIV antibody test

34. Parental refusal to consent to testing
If a parent refuses to allow the child to be tested or if a Gillick competent child refuses to be tested, appropriate legal advice should be sought and as a last resort the case will need to be referred to the courts.
The rights of the child
The rights of the parent
Children Act 1989
Working together to Safeguard Children 2006
UN Convention on the Rights of the Child.
Article 2 or 6 - the right to life.
Article 24 – the right to the highest attainable standard of health.
Disclosure of a parents HIV status infringes his/her right to medical confidentiality.
It also infringes his/her right to respect for his private life under article 8 (European Convention on Human Rights, 1954).

35. Prevalence & demographics
Adult HIV
Paediatric HIV
Consequences of undiagnosed HIV
Testing
Paediatric HIV management

36. Paediatric HIV
N = 1190 children who are alive and in active follow-up (up to March 2011)
‘Ageing cohort’ - the proportion of the cohort aged ≥10 years increased from 11% to 70% in last 15 years
Aims of treatment
Viral load suppression
Immune reconstitution
Reduction HIV related complications (OI, HIV encephalopathy, malignancies)
Maintain adherence to minimise risk of drug resistance
Collaborative HIV Paediatric study

37. ARV therapy in children
Indication to start is age dependant:
All infants under 1 year should be treated
All children with symptomatic HIV should be treated
Children >5 years are treated according to adult CD4 criteria
Choice of ARV limited by lack of safety data
Additional factors to be considered in children include pill burden, swallowing tablets, likely adherence patterns
Age appropriate education and adherence programmes vital for success
15% ARV naive
82% had undetectable viral load after starting ARV (85% in adults)
Average age for transition to adult services is 17 years old
Collaborative HIV Paediatric study
SOPHID 2011 data

38. Summary
Most HIV infected children in the UK are vertically infected, and half were born abroad.
Many will become symptomatic within the first 1–2 years of life; however, some may remain asymptomatic well into adolescence.
Parents may have major concerns about testing their children for HIV
HIV testing of children is clearly in the medical interests of the child and, in the majority of cases, is straightforward. However, if the parents consistently refuse it may become a child-protection issue and need to involve the courts.
A clear pathway of referral between health and social care needs to be identified to manage cases where parents refuse testing
Useful websites for guidelines:

39. WHO clinical staging of HIV/AIDS for children with confirmed HIV infection (2006)
Clinical Stage 1 Asymptomatic Persistent generalized lymphadenopathy Clinical Stage 2 Unexplained persistent hepatosplenomegaly Papular pruritic eruptions Extensive wart virus infection Extensive molluscum contagiosum Fungal nail infections Recurrent oral ulcerations Unexplained persistent parotid enlargement Lineal gingival erythema Herpes zoster Recurrent or chronic upper respiratory tract infections (otitis media, otorrhoea, sinusitis, tonsillitis)

40. WHO clinical staging of HIV/AIDS for children with confirmed HIV infection (2006)
Clinical Stage 3 Unexplained* moderate malnutrition not adequately responding to standard therapy Unexplained persistent diarrhoea (14 days or more) Unexplained persistent fever (intermittent or constant, > 1 month) Persistent oral candidiasis (after first 6–8 weeks of life) Oral hairy leukoplakia Acute necrotizing ulcerative gingivitis/periodontitis Lymph node TB Pulmonary TB Severe recurrent bacterial pneumonia Symptomatic lymphoid interstitial pneumonitis Chronic HIV-associated lung disease including bronchiectasis Unexplained anaemia , neutropenia or chronic thrombocytopenia

41. WHO clinical staging of HIV/AIDS for children with confirmed HIV infection (2006)
Clinical Stage 4 Unexplained severe wasting, stunting, severe malnutrition not responding to standard therapy Pneumocystis pneumonia Recurrent severe bacterial infections (e.g. empyema, bone or joint infection, meningitis) Chronic HSV infection; (orolabial or cutaneous for > 1 month or visceral at any site) Extrapulmonary/disseminated tuberculosis Disseminated non-tuberculous mycobacteria infection Kaposi’s sarcoma Oesophageal candidiasis (or candidiasis of trachea, bronchi or lungs) CNS Toxoplasmosis (after 1 month of life) HIV encephalopathy CMV retinitis or CMV infection affecting another organ Extrapulmonary cryptococcosis (including meningitis) Disseminated endemic mycosis (extrapulmonary histoplasmosis, coccidiomycosis,) Chronic cryptosporidiosis, Chronic isosporiasis HIV associated tumours including cerebral or B cell non-Hodgkin lymphoma Progressive multifocal leukoencephalopathy Symptomatic HIV-associated nephropathy or HIV-associated cardiomyopathy