Memorandum by the Royal College of Paediatrics
and Child Health (HA 25)
Prior to 1998 the UK was lagging behind comparable
countries in making HIV testing available for pregnant women.
A national Intercollegiate Working Party issued recommendations
for action designed to reduce mother to child transmission in
the UK by making an offer and recommendation of voluntary confidential
HIV testing a routine part of all antenatal care (Intercollegiate
Working Party Recommendations for enhancing voluntary confidential
HIV testing in pregnancy: reducing mother to child transmission
in the United Kingdom. Royal College of Paediatrics and Child
Health Publications. 1998).
In 2002 the Working Party reconvened to review
progress against its recommendations and against the instructions
in a Health Service Circular issued by the DH in 1999 (Department
of Health. Reducing mother to baby transmission of HIV. Health
Services Circular 1999/183). The offer and recommendation
of HIV testing to all pregnant women as a routine part of antenatal
care has been established nationwide, and there is good evidence
that uptake rates are high. An updated report which reviews progress
made to date and highlights challenges for the future is at the
stage of going for final approval to the participating bodies
prior to publication in 2005.
The evidence presented here is drawn from those
parts of the report that are relevant to the Terms of Reference
of the inquiry.
1. The consequences of new and proposed changes
for overseas patients with regard to access to HIV/AIDS
In 1997 only around one third of HIV infected
women giving birth in the UK were diagnosed prior to delivery.
This figure has risen dramatically to a predicted 89% in London
and 92% in the rest of England and Scotland in 2003. The estimated
proportion of UK children exposed to vertical HIV transmission
likely to have been infected was around 6% (and 4% in 2003). This
compares to around 20% in 1997 when the majority of women were
not diagnosed prior to delivery. (These estimates are based on
transmission rates of 26.5% for infants born to undiagnosed women
and 2.2% for infants born to diagnosed mothers5) (data from: UK
Collaborative Group for HIV and STI surveillance. Focus on Prevention.
HIV and other Sexually Transmitted Infections in the UK in 2003.
Health Protection Agency Centre for Infections. November 2004.)
The mainstay of management for preventing HIV
transmission in women identified as being HIV positive has been
Zidovudine (AZT) therapy for mother and infant, elective Caesarean
section and avoidance of breast-feeding for all women regardless
of whether they had early or more advanced disease. The table
below shows the relative contributions of these interventions.
Guidelines for the best management of HIV in pregnancy have been
drawn up by the British HIV Association (BHIVA) and are currently
being updated (www.bhiva.org). Some women require highly active
antiretroviral therapy (HAART) in pregnancy for their own health,
but this also enables delivery of the infant with an undetectable
viral load in the mother's blood. The use of combinations of antiretroviral
drugs in pregnancy is being closely monitored, as there are concerns
over potential long-term, as yet unknown, effects of intra uterine
We are concerned that these changes in charges
for overseas patients may reduce the uptake of antenatal testing
for HIV and consequently implementation of interventions to prevent
mother to child transmission. We understand that under the Children
Act treatment for the child will be free of charge but that this
is not the case for the pregnant mother. All the preventative
interventions are dependent on the mother agreeing to be tested
and most are implemented prior to delivery. If required to pay
for these interventions women who cannot afford the costs may
be deprived of appropriate antenatal care and risk producing HIV
infected children. In the long term costs of care and support
for such children would greatly outweigh the costs of providing
care to the mother in pregnancy.
TABLE OF INTERVENTIONS TO REDUCE TRANSMISSION
OF HIV FROM MOTHER TO CHILD
|Avoidance of breast feeding||12-15%
||3, 4, 5, 6, 7|
|Pre labour CS (+/-ART)||2%
|Pre labour CS + AZT mono-therapy||<2%
|Combination anti-retroviral therapy +/- CS (delivery VL <400 copies/ml)
|(delivery VL <50)||no published data yet
|Key: AZTZidovudine; ARTantiretroviral therapy; CSCaesarean Section; VLViral Load|
References for the Table
1 The European Collaborative Study. Risk factors for mother-to-child
transmission of HIV-1. Lancet 1992;339:1007-1012.
2 Dunn DT, Newell M-L, Ades AE, Peckham C. Estimates of the
risk of HIV-1 transmission through breastfeeding. Lancet 1992;340:585-588.
3 Connor EM, Sperling RS, Gelber R, et al. Reduction
of maternal-infant transmission of human immunodeficiency virus
type 1 with zidovudine treatment. New Engl.J.Med. 1994;331:1173-1180.
4 Lallemant M, Jourdain G, Le Coeur S, et al. A trial
of shortened zidovudine regimens to prevent mother-to-child transmission
of human immunodeficiency virus type I. New Engl.J.Med 2000;343:982-991.
5 Shaffer N, Chuachoowong R, Mock PA, et al. Short-course
zidovudine for perinatal HIV-1 transmission in Bangkok, Thailand:
a randomised controlled trial. Lancet 1999;353 :773-780.
6 Therapeutic and other interventions to reduce the risk of
mother-to-child transmission of HIV-1 in Europe. The European
Collaborative Study. Br J Obstet Gynaecol 2000;105:704-709.
7 Brockelhurst P. Interventions for reducing the risk of mother-to-child
transmission of HIV infection. Cochrane Database Syst Rev. 2002;(1).
8 Elective caesarean-section versus vaginal delivery in prevention
of vertical HIV-1 transmission: a randomised clinical trial. The
European Mode of Delivery Collaboration. Lancet. 1999 Mar 27;353(9158):1035-9.
9 The mode of delivery and the risk of vertical transmission
of human immunodeficiency virus type 1a meta-analysis of
15 prospective cohort studies. The International Perinatal HIV
Group. N Engl J Med. 1999 Apr 1;340(13):977-87.
10 Cooper ER, Charurat M, Mofenson L, Hanson IC, Pitt J, Diaz
C, Hayani K, Handelsman E, Smeriglio V, Hoff R, Blattner W; Women
and Infants' Transmission Study Group. Combination antiretroviral
strategies for the treatment of pregnant HIV-1-infected women
and prevention of perinatal HIV-1 transmission. J Acquir Immune
Defic Syndr. 2002 Apr 15;29(5):484-94.
2. Progress to date in Implementing the recommendations
of the Committee's inquiry into Sexual Health (the Committee's
Third Report of the Session 2002-03)
Despite the great improvement in antenatal HIV testing and
uptake of appropriate care for HIV infected women, there remain
situations were management of HIV in pregnancy is still complex/problematic.
As part of the deliberations of the Intercollegiate Working Party,
four main areas have been identified where future challenges will
need to be met in order to maintain the progress achieved so far.
In summary these include:
(A) Development of networks for the management of HIV in pregnancy
1. The need for units to have a regular multi-disciplinary
forum for managing HIV in pregnancy with a recognised process
for the development of individual birth plans.
2. The need to encourage women to allow disclosure of
their diagnosis to the primary care team so as to avoid conflicting
advice being for instance in regard to breast feeding or infant
3. The need to develop a regional network across the
country for managing children with HIV. The Children's HIV National
Network (CHINN) have recently conducted a review (available shortly
at www.bhiva.org/chiva) and one of the main recommendations is
the development of such a paediatric HIV network to manage paediatric
cases but also contribute to the multidisciplinary input on perinatal
care and , importantly, to follow up all children both infected
and non-infected, who have been exposed to antiretroviral treatment
pre- or post-natally.
(B) Case Management
1. The need for units to have a policy on how to revisit
sympathetically the offer of HIV testing at a later stage in pregnancy
for women who initially refuse the test and, for those women who
are positive but refuse interventions in pregnancy a system for
pre-birth planning of postnatal interventions in the infant to
reduce the risks of transmission.
2. The Department of Health has produced national standards
for Antenatal Screening for Infectious Diseases (Screening
For Infectious Diseases in Pregnancy. www.doh.gov.uk/antenatalscreening).
It should be standard practice that units audit their performance
against these standards.
3. The consideration that a national confidential enquiry
programme for investigating cases in which mother to child transmission
of HIV occurs should be established in the UK to identify possible
(C) Evolution of the management of HIV disease
1. In view of the rapidly increasing complexity of treatments
for HIV infection generally, there is a major need for continuing
surveillance and analysis of the results of different interventions
for preventing HIV transmission so as to enable mothers to receive
the best evidence based management.
(D) Long term follow-up of antiretroviral exposure in utero
1. The necessity that robust mechanisms for very long
term follow up of antiretroviral drug exposed infants to be continued
2. The requirement that all pregnancies in HIV infected
women be reported prospectively to the National Study of HIV in
Pregnancy and Childhood (NSHPC) and to the international drug
registry (www.apregistry.com), and all infants born to mother
to the NSHPC (co-ordinator of the NSHPC: Dr Pat Tookey 0207
829 8686, email firstname.lastname@example.org). The Children's HIV
National Network (CHINN) could be involved in collecting the paediatric
3. The need to continue the current funding arrangements
for Paediatric HIV services which are dependent on the reporting
of outcomes for infected and non-infected infants.
4. The need to keep families and voluntary sector organisations
fully informed with up to date evidence.