Select Committee on Health Written Evidence


APPENDIX 19

Memorandum by the Royal College of Paediatrics and Child Health (HA 25)

BACKGROUND

  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.

TERMS OF REFERENCE

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 exposure.

  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
Intervention Transmission rate(approx)References
None25-30%1
Avoidance of breast feeding12-15% 2
AZT mono-therapy6-8% 3, 4, 5, 6, 7
Pre labour CS (+/-ART)2% 8, 9
Pre labour CS + AZT mono-therapy<2% 8
Combination anti-retroviral therapy +/- CS (delivery VL <400 copies/ml) 1%10
(delivery VL <50)no published data yet
Key: AZT—Zidovudine; ART—antiretroviral therapy; CS—Caesarean Section; VL—Viral 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 1—a 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 immunisations.

  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 systems failures.

(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 and enhanced.

  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 p.tookey@ich.ucl.ac.uk). The Children's HIV National Network (CHINN) could be involved in collecting the paediatric data.

  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.





 
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