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The management of the HIV positive pregnant woman
The UK perspective
Dr Annemiek de Ruiter
Guy’s & St Thomas’ NHS Foundation Trust
London SE1 7EH
3500 HIV patients
Overview
• Epidemiology
• British HIV Association (BHIVA) guidelines
– Antiretroviral therapy
– Mode of delivery
– Breastfeeding
• Issues facing African women with HIV in the UK
• Experience of African women undergoing interventions to prevent infant HIV transmission in the UK
HIV care in the UK
• Testing for HIV and the treatment and
care of HIV is completely free of charge for
all patients
HIV and AIDS reporting section
National Infection Service
Public Health England
HIV in the United Kingdom: 2015
Presentation title - edit in Header and FooterPresentation title - edit in Header and Footer6
Estimated number of people living with HIV (both
diagnosed and undiagnosed): UK, 2014
HIV in the United Kingdom: 2014
Presentation title - edit in Header and FooterPresentation title - edit in Header and Footer7
Treatment cascade of adults living with HIV: UK, 2014
HIV in the United Kingdom: 2014
Presentation title - edit in Header and Footer8 New HIV diagnoses and number of persons accessing HIV care in the United Kingdom: 2014
Proportion of HIV diagnosed persons with a viral load
<200 particles/mL who are receiving antiretroviral
therapy: United Kingdom, 2010-2014
94%92% 91%
88%92%
95% 93% 93%89%
94%96% 95% 94%90%
95%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Men who have sex withmen
Heterosexual men Hetrosexual women People who injectdrugs
All**
Pe
rce
nta
ge
se
en
fo
r H
IV c
are
Prevention group
2010 2012 2014
**Includes those with no exposure category reported
www.bhiva.org
BHIVA GuidelinesMaternal HAART
• If conceives on effective HAART – do not
change
• If starting HAART in pregnancy use abacavir or
tenofovir based HAART
• Antiviral Pregnancy Registry
• Newer single-tablet regimens used when
required
BHIVA GuidelinesMaternal HAART
• Commence as soon as possible
• All women should have started by 24 weeks
• Continue post delivery regardless of baseline
CD4
BHIVA GuidelinesMode of delivery
• Aim for vaginal delivery
• Viral load:
– <50 c/ml aim for vaginal delivery
– >400 c/ml aim for PLCS
– 50-400 c/ml decided on case by case basis
• Intrapartum zidovudine used less over recent
years
BHIVA Guidelines
Infant PEP
• Initiated within 4 hours of birth for 4 weeks
• Zidovudine monotherapy if all goes according to
plan
• Triple therapy (ZDV/3TC/NVP) if VL not
suppressed (since 2001)
www.ias2013.org Kuala Lumpur, Malaysia , 30 June - 3 July 2013
Premature birth
Intl. AIDS Conference 2006, Abstract TUPE 0532
Prematurity and antiretroviral therapy: population-based HIV
surveillance in the UK and Ireland, 1990-2005
Figure 1: Percentage of deliveries at <37 weeks by type of ART and maternal
characteristics, with 95% confidence intervals
0
5
10
15
20
25
30
35
Mo
no
/du
al
HA
AR
T
Wh
ite
Bla
ck
Afr
ica
n
Oth
er
<2
5 y
ea
rs
25
-34
>=
35
Oth
er
IDU
No
Ye
s
>=
50
0
20
0-5
00
<2
00
Perc
en
t p
rem
atu
rity
CD4 cells/µl
HIV
symptoms
Source of
infectionMaternal ageEthnicityART
Data from the National Study of HIV in Pregnancy and Childhood (NSHPC)
2%
4%
9%
29,631
33,2
0%
2%
4%
6%
8%
10%
12%
14%
16%
18%
20%
20
22
24
26
28
30
32
34
36
2000-2004 2005-2009 2010-2014
Pro
po
rtio
n ≥
40
ye
ars
at d
eliv
ery
Me
dia
n m
ate
rnal
age
(ye
ars)
Year of delivery
Maternal age by time period 2000-2014
Median age
Percent ≥40y at delivery
Results – trends in maternal age
0%
2%
4%
6%
8%
10%
12%
2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014
Year of delivery
Proportion ≥40 years old at delivery
All pregnancies
Pregnancies in primiparous women
Results – Pregnancy outcomes, all women
Younger mothersn=14646
Older mothers (>40y)n=856
p-value
Stillbirth 1.0% 1.6% 0.07
Twins 1.9% 3.0% 0.03
Congenital abnormalities
2.8% 4.2% 0.02
Preterm (<37wks) 13% 14% NS
Preterm (<31wks) 3% 4% NS
Birth weight <2.5kg 14% 14% NS
MTCT 0.8% 0.6% NS
African regions & migration to the UK
1961-1981
1991-2001
2001-2011
Office for National statistics: Immigration patterns of non-UK born populations in England and Wales in 2011 –
17/12/2013
Women, HIV & migration
• In high income countries women living with HIV
may frequently be from migrant populations
• Migration can impact wellbeing (fear of
immigration status, job insecurity, housing,
isolation, being far from family and friends)
• This can be compounded by HIV
Understanding of HIV
• Do not perceive themselves to be at risk of HIV
• Difficulty in accepting the diagnosis
• Denial
Impact of stigma
• Women fear disclosure to partner, friends,
family and community
• Fear rejection
• Fear disclosure to healthcare professionals and
employers and fear a lack of confidentiality
• Experience stigma in healthcare settings
• Acts as a barrier to accessing HIV treatment
• Stigma effectively silences the voices of women
Talking about HIV
• Talking to other people with and about HIV is a
beneficial process
• Women living with HIV are less likely to tell other
people about their HIV than men
• Peer support is invaluable…….if they access it
Dhairyawan R, Tariq S, Scourse R, Coyne K. Intimate partner violence in women living with
HIV attending an inner city clinic in the United Kingdom: prevalence and associated factors.
HIV Med, 2013 May; 14(5): 303-310.
Lifetime IPV = 52%
Dhairyawan R, Tariq S, Scourse R, Coyne K. Intimate partner violence in women living with
HIV attending an inner city clinic in the United Kingdom: prevalence and associated factors.
HIV Med, 2013 May; 14(5): 303-310.
IPV in past 1 year = 14%
Dhairyawan R, Tariq S, Scourse R, Coyne K. Intimate partner violence in women living with
HIV attending an inner city clinic in the United Kingdom: prevalence and associated factors.
HIV Med, 2013 May; 14(5): 303-310.
IPV during pregnancy = 14%
Dhairyawan R, Tariq S, Scourse R, Coyne K. Intimate partner violence in women living with
HIV attending an inner city clinic in the United Kingdom: prevalence and associated factors.
HIV Med, 2013 May; 14(5): 303-310.
Source: http://artnews.org/chrisofili/
HIV-positive African women’s engagement with HIV care in the UK during pregnancy
Dr Shema Tariq
Postdoctoral Clinical Research Fellow, UCL
Honorary Consultant GUM/HIV, Mortimer Market Centre
How do African women living with HIV in the UK
engage with HIV services and interventions during
and after pregnancy?
Overall question
1. Do ethnicity, region of birth and duration of residence in the UK affect African women’s access to HIV care during and after pregnancy?
2. If so, how?
3. What are women’s experiences?
Specifically
Number of women living with HIV reported as pregnant over time
Source: Tariq (unpublished, 2013)
Trends in maternal African region of birth, 1990-2010
51% of HIV+ women book late for antenatal care (≥ 13
weeks)
Group diagnosed before pregnancy: association between ethnicity and late booking
Late antenatal booking
AOR (95% CI) p
White (reference) 1.00 -
African 1.98 (1.27, 3.07) 0.002
Other black 1.21 (0.60, 2.43) 0.596
Other 0.86 (0.37, 1.96) 0.713
*Adjusted for maternal age, parity and reporting region; AOR, adjusted odds ratio; CI, confidence interval
97% of women receive ART in pregnancy with no difference
between African and white British women
Source: Tariq et al. IAS 2011: abstract TUPE283
80% of women had an undetectable viral load at
delivery with no differences according to ethnicity or other
measures of migration
Source: Tariq (unpublished work 2013)
Association between maternal African region of birth and not taking ART in pregnancy
AOR 1.77
p=0.005
Source: Tariq et al. IAS 2011: abstract TUPE283
Religious beliefs
Pentecostalism fosters resilience
• Source of great joy and personal empowerment• Belief in divine intervention fosters sense of hope for the future• The church can function as a surrogate family• Material assistance and advice at times of hardship
What constitutes a ‘miracle’?
Women cited the simplification of drug regimens, having an undetectable HIV viral load on treatment, continued good health
and the safe delivery of an HIV-negative child as evidence of divine intervention
Being pragmatic
I need God and medication. It’s like if you’re sitting an exam. God may lead you to read something before the exam and then you can answer the question. But if you
don’t even carry the text book...how do you do it?
Faith and spirituality
• Can be a barrier to accessing care for HIV
• Faith leaders may be unwilling to acknowledge HIV
• The role of prayer in healing and impact on use of ARVs
Stigma
The funny thing in Africa, especially my country, when they know you have this, even your baby can’t come close to you. It’s not like this in Uganda, in East Africa, because they know there they are in this situation – but in West
Africa, there not a lot of people with it. Even your mum, or your brother, or your sister, or your kid, no-one will come
close to you.
8/15 women described negative
experiences of maternity care
Source: Tariq et al. BHIVA 2014: abstract P136
“I could hear the midwife
outside telling the other one
to be careful as I was ‘high,
high risk”
When I think about the experiences I
had…I wanted four or five kids.
Now I said to my husband ‘no, this is
the end of it’.
www.ias2013.org Kuala Lumpur, Malaysia , 30 June - 3 July 2013
Impact
I feel unhappy. I just accept it, but, in my heart, it pains me, because, as a woman you have to breastfeed your
baby.
It’s like I’m not having bond with the child.
Difficulties
The formula as well is very expensive. At some point we could not afford it was so expensive.
That’s what really make me feel sad because our culture in Africa you’re supposed to
breastfeed.
Fostering resilience
My first daughter she wasn’t breastfed and she’s okay so this one now, the current one, is not going to be
breastfed.
“It pains me because as a woman you have to breastfeed your baby” :
decision-making about infant feeding among African women living with
HIV in the UK
S Tariq, J Elford, P Tookey, J Anderson, A de Ruiter, R O’Connell, A Pillen
Sex Transm Infect doi:10.1136/sextrans-2015-052224
• cultural• lack of support
network• poverty• social pressure• disclosure
Difficulties Resilience
Impact
• financial help• examples of
healthy babies• creative excuses• support
• anxieties about child health• bonding• personal loss• Stigma• isolation
Formula feeding
Source: Tariq et al. IAC 2012: abstract 6632
Breastfeeding and HIV
• The majority of HIV-positive mothers abstain from breastfeeding
• Women are increasingly aware of different approaches in their country of origin
• BHIVA guidelines recommend formula feeding but will support breastfeeding in women on HAART with an undetectable viral load
• Overall 12% women (1055/8695) did not access care in the year after pregnancy
• Of those who did not access care eight were known to have died
• Almost 40% (414/1055) women who did not access care returned for care by the end of 2010
LTFU 1 year after pregnancy
n=6535 AOR (95% CI)a
White 1
Black African 1.96 (1.44, 2.67) *
Caribbean 1.47 (0.88, 2.44)
Other 1.00 (0.61,1.63)
a Adjusted for age, time since diagnosis, last CD4, last viral load, reporting area and year of pregnancy; * p<0.001
LTFU (1y) and maternal ethnicity
Experience of pregnancy amongst African
women living with HIV in the UK - summary
• Good outcomes
• Challenges
– Social circumstances
– Stigma
– Maternity care
– Infant feeding
• Maternal love and resilience
A person centred approach
Care must vary depending on the unique needs
and personal circumstances of each woman . . .
Culture
or religion
Immigration
Stigma and fear
of discrimination Co-morbid problems (e.g. alcoholism, drug use,
depression)
Family issues
Medical history
Violence
or sexual abuse
Sexual issues
Support
Stage of
HIV journey
Acceptance
of diagnosisInfant feeding
Disclosure
Socio-economic
factorsAge
A person centred approach
Care must vary depending on the unique needs
and personal circumstances of each woman . . .
Culture
or religion
Immigration
Stigma and fear
of discrimination Co-morbid problems (e.g. alcoholism, drug use,
depression)
Family issues
Medical history
Violence
or sexual abuse
Sexual issues
Support
Stage of
HIV journey
Acceptance
of diagnosisInfant feeding
Disclosure
Socio-economic
factorsAge
Source: http://artnews.org/chrisofili/
Thank you
Shema Tariq, Jane Anderson
Claire Townsend, Claire Thorne, Helen
Peters & Pat Tookey (NSHPC)
Cathy Nelson-Piercy & Kate Harding (GSTT)
Lynn Mofenson