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Table of Contents
Preface…………………………………………………………………………………………….…
3
What is PMTCT all about? ………………………………………………………………….….
5
Svein Gunnar Gundersen
Professor of International Health, Universty of Oslo, Norway
Scaling up Interventions to Prevent MTCT………………………………………………
9
Dr Connie M Osborne
UNAIDS, Geneva
HIV, Pregnancy and Breastfeeding: Dilemmas for Women in Africa……………
15
Marge Berer
Editor, Reproductive Health Matters, London
PMTCT – a Mother’s Perspective…………………………………………………………….
33
Mary Okoth
Trainer and consultant, London, UK
Breast-Feeding and the Dilemma Posed by AIDS……………………………………..
35
Marina de Paoli
PhD Candidate, University of Oslo, Norway
Challenges Involved in the Implementation of a PMTCT Programme…………..
39
Sia Msuya
PhD Candidate, University of Oslo, Norway
Should PMTCT be a priority in Uganda? ……………………………………………….…
41
Lydia Kapiriri
PhD Candidate, University of Bergen, Norway
Experiences from counselling in a PMTCT project in Botswana……………….…
47
Ludo K. Nkhwalume
Master Student in International Community Health, University of Oslo, Norway
Appendix…………………………………………………………………………………………….
51
Save the children of Africa from HIV……………………………………………………….
53
Conference report: »Global Strategies for Prevention of HIV Transmission from Mothers to Infants»
By Professor Svein Gunnar Gundersen
Universty of Oslo, Norway
Dilemmaer for mødre i aids’ tidsalder……………………………………………………..
57
Av Rachel Myr
Først publisert i Tidsskrift for jordmødre, nr. 12/2001
Mødre smitter sine barn………………………………………………………………………..
59
Av Liv Røhnebæk Bjergene
(Først publisert i Bistandsaktuelt, nr. 10/2001)
Seminar program…………………………………………………………………………………
61
Participants……………………………………………………………………………………...…
62
Centre for Health and Social Development
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Seminar report
PMTCT: Dilemmas Facing Mothers in the Time of AIDS
Centre for Health and Social Development
Post Office Box 133 Sentrum, N-0102 Oslo, Norway
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Preface
Kåre Moen, MD, MPH
Center for Health and Social Development - HESO
Since the beginning of the AIDS epidemic, more than 5 million children worldwide have
become infected with HIV, mostly through mother-to-child transmission (MTCT).
Gradually, new interventions for prevention of MTCT (PMTCT) are becoming available also
in the developing world. These methods represent potential opportunities in the fight against
AIDS, but they are also associated with a host of challenges and dilemmas - for governments,
communities and individual mothers and fathers.
The challenges are partly related to the limited availability of antenatal care and perinatal
services in many countries. This makes it extremely difficult to provide PMTCT services in
the first place. The availability and quality of counselling and HIV testing services are also
limited in many locations. If such services are in fact available, many women are not willing
to get tested because of the stigma attached to HIV. Many more will meet objections against
testing from their partners.
When a child is born, the mother is facing the dilemma of whether to breast-feed or not.
Breast-feeding may transmit HIV, but lack of safe water makes formula feeding unsafe as
well - and formula feeding may also not be culturally acceptable, or too expensive to afford.
To complicate things further, a study in Durban found that exclusive breastfeeding was
significantly less risky than mixed feeding, and not much more risky than formula feeding.
Finally, the PMTCT interventions that are now available in some parts of the developing
world may protect children from infection, but their mothers and fathers will not receive any
treatment for their HIV infection. Who will look after these children if their parents die?
In order to examine these - and other - obstacles and dilemmas in some more detail, a seminar
was arranged in Oslo on 19 November 2001. The seminar was prepared for The Norwegian
Agency for Development Cooperation (NORAD) in collaboration between the partner
institutions HeSo (Centre for Health and Social Development) and the Department of General
Practice and Community Medicine at the University of Oslo. NORAD provided the funding
for the meeting. There were a total of 59 participants in the meeting, which lasted a full day.
The present document contains lecture notes, presentation slides and transcripts from the
conference. It is my hope that this material will prove useful both for the participants and
others with an interest for PMTCT.
Oslo, 01.03.2002
Kåre Moen
MD, MPH
kare.moen@heso.no
Address: HeSo, P O Box 133 Sentrum, N-0102 Oslo, Norway
Phone:
+47 22 40 39 14
Telefax: +47 22 42 48 43
Centre for Health and Social Development
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Seminar report
PMTCT: Dilemmas Facing Mothers in the Time of AIDS
What is PMTCT all about?
Svein Gunnar Gundersen
Professor of International Health,
Universty of Oslo
End 2000 Global estimates
Adults and children




People living with HIV/AIDS: 36.1 mill.
New HIV-infections in 2000: 5.3 mill.
Death due to HIV/AIDS in 2000: 3.0 mill.
Cumulative death due to HIV/AIDS: 21.8 mill.
Children (<15 years)





Cumulative number of death due to HIV/AIDS: 4.3 mill.
Children living with HIV/AIDS: 1.4 mill. (1.1 mill. in Africa)
New HIV-infections in 2000: 600.000 (2000 per day)
Death due to HIV/AIDS in 2000: 500.000
Orphanes due to HIV/AIDS: 13.2 mill (12.1 mill. in Africa)
Mother to child transmission






1/3 during pregnancy
1/3 during delivery
1/3 through breastfeeding
Reduced by C. section
Little effect of other interventions like Vitamin A, vaginal cleaning etc.
Effect of antiviral drugs
Transmission rates
Before 1994



Developing countries: 25-43%
Industrialised countries: 12-25%
In 1994: Shown preventive effect of zidovudine (ZVD=AZT)
After 1994



Developing countries: As before
Industrialised countries: Less than 2%.
Due to a preventive package:
o Multidrug treatment (HAART) to mother and child
o Caecarian section
o Formular feeding
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ACTG 076 in USA/France 1974

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
ZVD oral 100mg x 5 from week 14-34
ZVD i.v. during delivery
ZVD oral 2 mg/kg x 4 to infant for 6 weeks
No breastfeeding
68% reduction vs. placebo at 18 months
Cost: USD 1000
Harvard Short course ZDV Thailand 1998






ZVD oral 300mg x 2 from week 36
ZVD oral 300mg/3 hrs. during delivery
No treatment to infant
No breastfeeding
51% reduction vs. placebo at 18 months
Cost: USD 50
PETRA Short course ZVD+3TC Uganda, SA, Tanzania 1998






ZVD oral 300mg x 2 and 3TC 150mg x 2 from week 36
Oral ZDV 300mg/3 hrs. and 3TC 150mg/12 hrs. during delivery
Oral ZDV 4mg/kg x 2 and 3TC 2mg/kg x 2 for 1 week
Breastfeeding
50% reduction vs. placebo at 6 weeks
Cost: USD 100-150
HIVNET 012 Nevirapine (NVP) Uganda 1999





NVP oral 200mg once at labour
NVP oral 2mg/kg once to infant at age 48-72 hrs.
Breastfeeding
47% reduction vs. single dose ZVD at 14-16 weeks
Cost: USD 1-4 (only cost-effective?)
Breastfeeding: 15% transmission during 2 years



First 6 months (most essential for child nutrition): 5% transmission
Next 18 months: Only 8-10% transmission
HIVNET 012: Follows same pattern
Risk factors while breastfeeding




Mixed feeding: Damage to childs intestine
Cracked nipples
Mastitis
Oral thrush in infant
Exclusive breastfeeding


Durban: Less HIV-transmission when exclusive breastfeeding during first 6 months
Tried out after a major marketing campaign
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Early weaning at 6 months
Several studies going on
HIVNET 023 Durban (ongoing)



Exclusive breastfeeding for 6 months
Nevirapine to infant for 6 months:
o Arm 1: 2-4 mg/kg daily
o Arm 2: 4-8 mg/kg x 2 weekly
o Arm 3: 4-8 mg/kg x 1 weekly
HIV-preventive concentration of 100microgram/ml only in arm 1 and 2
VCT or mass prophylaxis?




VCT (Voluntary Counselling and Testing) the basis of any HIV-related service
Mass prophylaxis by NVP the only cost-effective alternative?
Mass prophylaxis keeps up ignorance
VCT a key to the family contact?
Mothers: ”What about me”

Prof. Mmiro, Chairman Kampala meeting: ”We can not save the children of Africa if
their mothers die of AIDS”
Numerous dilemmas



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Research ethics: Adapt to local standard
Orphan problem
Confidentiality
Rejection and marginalisation
Formular feeding a stigma
The economic dilemma




Already overstretched economy and overloaded health services
Cost of treating all HIV-infected:
Switzerland: 0.06 % of GNP
Zimbabwe: 300 % of GNP
Choice between ”pest or cholera”





The dilemma of the mother:
o If breastfeeding child might die of HIV
o If not breastfeeding child might die of malnutrition and gastroenteritis
No clear advise from professionals
Mothers learn from their own experience
Prevention starts by knowledge
VCT and entry point to communication
There is now a need for operational research!
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Scaling up interventions
to prevent MTCT
Dr C M Osborne
UNAIDS, Geneva
Introduction
No words can truly capture the tragedy of a pregnant woman who, thinking that all is well
with her unborn baby, discovers that she herself is HIV positive.
SCALING UP INTERVENTIONS TO
PREVENT MTCT
THE VISION OF THE UN INTERAGENCY TASK TEAM
ON PREVENTION of MTCT of HIV
(UNAIDS Secretariat, UNFPA, UNICEF and WHO)
By Dr C M Osborne
Meeting on “Dilemmas facing Mothers in the time of AIDS”
Oslo, 19 November, 2001
Although we now have a cost
effective, public health
intervention package that can
cut down the numbers of
children acquiring HIV from
their mothers by half, for the
great majority of women with
HIV in the world this package
is out of reach.
Global access to prevention of
MTCT was a key concern at
the United Nations General
Assembly Special Session on
HIV/AIDS (UNGASS) which
took place in June this year.
MTCT at UNGASS on HIV/AIDS 2001
At this historic meeting, Representatives from over 180 countries including heads of states
committed their governments to reducing the number of infants infected with HIV by 20% by
2005 and 50% by 2010.
THE UN GENERAL ASSEMBLY
Countries would do this by
SPECIAL SESSION ON HIV/AIDS PMTCT
GOALS AND TARGETS
ensuring that at least 80 % of
pregnant women would have
AT LEAST 80 % of pregnant women to have access to:
access to: 1) antenatal care, 2)
information, 3) counselling and
•antenatal care,
4) other HIV-prevention services.
•information,
In addition, there would be
•counselling and
access to 5) treatment, especially
•other HIV-prevention services.
anti-retroviral therapy and, where
In addition, there would be access to:
appropriate, 6) breast-milk
treatment, especially anti-retroviral therapy and, where
substitutes and the provision of a
appropriate, breast-milk substitutes and the provision of a
continuum of care.
continuum of care.
The fundamental vision of the
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interagency task team on prevention of MTCT (PMTCT) of HIV is embodied in the the
goals set by the UN General Assembly.
Under-five mortality rates in African countries by 2010
The next slide shows what the under-5 child mortality rates in 6 selected developing countries
will look like in the year 2010 if nothing is done about HIV/AIDS.
Projected under-5 child mortality rates
in selected African countries in 2010
250
Deaths per 1000 live births
200
Without AIDS
With AIDS
150
100
50
0
Botswana
Kenya
Malawi
Tanzania
Zambia
Zimbabwe
Source: UNICEF
The dramatic impact that HIV/AIDS will have on U5MRs is obvious. But what is also
obvious is in at least 3 of these selected countries, U5MRs will still be unacceptably high,
even if it weren't for HIV/AIDS. The slide also highlights the current rather dismal
foundations, on which on which many low income countries will need to scale up their
PMTCT interventions.
Scaling up PMTCT interventions – the vision
But prevention of MTCT (PMTCT) of HIV is not just a child survival strategy. PMTCT
programmes provide a unique opportunity for a number of positive outcomes:
Identified HIV positive mothers, their partners, children and family units can enter the
continuum of care. The majority of HIV positive mothers are young and asymptomatic and
because of this, they would be entering the continuum of care at a much earlier stage of their
HIV infection than would normally have happened.
Secondly, the negative women will be more likely to want to maintain their sero-negativity,
while those who are positive, would now be in a position to make informed choices about
future pregnancies that take into account their HIV status
The women of unknown status also benefit. First of all, through the general strengthening of
antenatal, maternity and postnatal care services that usually happens when PMTCT
programmes are introduced and secondly, through the knowledge they would have gained
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about HIV and MTCT during their care. Women of unknown status who go through PMTCT
programs also have an opportunity to be in a position to make informed choices about future
pregnancies, in this situation, taking into account the fact that they do not know their HIV
status.
Three-pronged strategy for MTCT prevention
In this slide we show the 3-prong strategy for MTCT prevention.

The best way to prevent MTCT of HIV is by preventing HIV infection in girls and
women of child bearing age. Girls and women in the age group 15 to 24 years are
particularly vulnerable. We know the reasons for this. However, though we must focus
on this vulnerability , we can not leave out their partners including our young men.

Next in line, is prevention of unintended pregnancies in HIV positive women and all
women at risk. This requires strengthening of family planning services. Again, as with
primary prevention VCT is an essential component of this. Women considering
pregnancy should be encouraged to find out their HIV status. Further counselling on
the implications of pregnancy when infected with HIV should be offered for those
found to be
positive.

Once a pregnant
Prevention
women knows
that she is
infected, the risk
of transmission
to her infant can
•Prevention of
•Prevention of
•Prevention of
be reduced
HIV in young
unintended
transmission
almost by half if
people.
pregnancies
from an HIV+
she takes antiwoman to her
• Prevention of
in HIV positive
retroviral
infant
HIV infection
women
treatment in the
in women of
•Care for the
last weeks of
childbearing
mother and her
pregnancy or
around delivery.
age.
family
Ideally, she
should also avoid breastfeeding but where this is not affordable, feasible, safe and
sustainable then she must exclusively breast feed for the first few months.

The majority of women attending antenatal care do not know their status and the
majority who do are HIV negative. For these women (and those who are HIV positive
but can not afford or sustain a safe alternative), breast milk is the best and should be
promoted and protected. Exclusive breast feeding should be practised for the first 6
months and continued for up to 2 years. All women regardless of their HIV status
should be advised to have protected sex using condoms not only during pregnancy
and lactation but, for always except when they intend to get pregnant again.

The HIV positive mother who chooses to formula feed loses the contraceptive benefits
of breast feeding and is therefore in greater need of dual protection post natally i.e.,
condom use and some other appropriate family planning method.
Three-pronged strategy for MTCT
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The PMTCT intervention package
Although the PMTCT intervention package has many components and is in a way complex,
as far as the infant feeding and care of the mother and her family is concerned, it is feasible
and can be integrated in family planning, antenatal, maternity and postnatal care settings.
Care in this package includes
prevention and treatment of
opportunistic infections in the
infected mothers, their infected
partners and children including,
cotrimoxazole prophylaxis for
all exposed infants. It also
includes nutritional support to
mothers and their children and
where appropriate the whole
family unit. Last but not least,
it includes - where and if
appropriate - the need to treat
with highly active anti
retroviral therapy (HAART),
infected mothers, their partners and children.
THE PMTCT INTERVENTION
PACKAGE
•Comm. Mobilisation
•VCT
•STI screening
•Iron, Folic acid, (+Malaria CPX)
•ARV and Infant Feeding counseling
•Safe delivery practices
•Safe feeding practices
•Family planning
•Care for the mother /her family
Indeed the PMTCT package is a safe motherhood intervention, in addition to being a child
and family survival strategy. Over 500,000 women, regardless of HIV status, die each year
from complications of pregnancy and child birth. PMTCT programmes can make a difference.
Strengthening the heath system
The erosion on the health system that most low- income countries are witnessing cannot be
ignored. Unfortunately, in certain cases a nation ’s poor health system, has prevented the
participation of some partners with the potential to make a difference. Such partners have
insisted that, governments strengthen the health system first before accommodating further
interventions. Strengthening of the health system include not only addressing gaps in the
infrastructure, but should include supplies and logistics and innovative approaches to motivate
the under paid health worker in low income countries. Motivating staff might go a long way
in sorting out some of the negative staff attitudes we have been hearing about.
In Uganda, using existing capacity in the public health system, the government has been able
to demonstrate that even with a weakened health system, it is possible to safely and
effectively incorporate antiretroviral therapy as part of an essential care package for PLWHA.
PMTCT and programmes like the Accelerating Access Initiative, do help to strengthen health
systems and thus are able to turn the tables up again.
Time line
The timelines that you see on this slide are very general. We have begun to work on
operational goals and targets which will include both process and outcome indicators related
to the intervention package.
Broadly speaking , we think that, in at least all high prevalence countries, it might be possible
that BY THE END OF:
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
2001…National co-ordinating and or technical working groups on PMTCT would
have been appointed to develop national plans for implementation and or scaling up of
PMTCT interventions. At the very minimum, in countries that have not started
PMTCT activities, the National PMTCT program would, in 2002, have kicked off in
at least one site in one district.

2002… Local capacity for both implementation and rolling out to other sites would
have been developed.

2003… Countries would
have rolled out to at least
50% of the districts.

2005… Countries would
have rolled out to the rest
of the districts.
The Ugandan government in its
scaling up plan for PMTCT has
committed itself to a goal which
says that: by the end of 2005, the
country will have rolled out
interventions for PMTCT to all
districts.
REDUCE HIV IN INFANTS
BY 20% BY 2005 AND 50% BY 2010
Proposed Time Line
BY
END 2001
END 2002
END 2003
END 2005
2005 - 2010
National Co-ordinating /TWG on
PMTCT in place
Local capacity to expand to at least > 1
site developed
Roll-out to at least 50% of the districts
Roll-out to all districts.
CONSOLIDATION !!!!
What has the UN been doing that we need to scale up?
Evidence based advocacy for PMTCT has been one of our major activities.

WHO has improved access to
strategic information and
What specifically has the UN been
evidence on PMTCT. The
doing that we need to scale up ??
organisation is currently
working on the establishment
• ADVOCACY
of PMTCT norms and
• ACCESS TO INFOMATION
standards, developing
PMTCT clinical guides and a
• NORMS AND STANDARDS
PMTCT training package. In
addition, it is supporting both
• BEST PRACTICE DOCUMENTATION
clinical and operational
research on ARVs for
• TECHNICAL SUPPORT: 11 pilot countries
PMTCT and the complex
infant feeding issues. Most of
you will agree that a 50%
reduction in transmission rate
is not good enough.The challenge of making breast feeding safe should be met head on !.

We have identified « best practices » and are publishing them.

In terms of technical support in the field, UNICEF has gone beyond supporting the initial
11 pilot countries and is currently providing support to 79 sites in 16 countries. This
support is in a number of areas that are critical to either kicking off implementation or
scaling up including, the development of culturally sensitive and locally appropriate
communication strategies, just to mention one of the key areas.
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PMTCT programs can make a difference
This slide supports what we have
been saying about PMTCT
programs being able to make a
difference.
In Thailand, a low income country,
the MTCT prevention program
began in 1997, a year that the
country had an huge economic crisis.
Despite this, we see that since1997, a
steady significant decline in AIDS
cases in children aged 0 to 4 years is
being witnessed. The same can
happen in the other low –income
countries.
Thailand
AIDS Cases in Children 0-4 yrs
1201
1241
1009
938
805
615
461
21
74
136
<1990 1991 1992 1993 1994 1995 1996 1997 1998 1999
MTCT prevention
programme
Source : MoPH, Thailand
The way forward
We are now at the critical phase. In the next decade, it is vital that all high prevalence
countries scale up. To fulfil our
vision:
THE WAY FORWARD?


THE WAY FORWARD?
We are building many
alliances and partnerships
especially South to South
collaborations.
The World Bank’s Multicountry AIDS Program, the
Global aids AND Health Fund
and now MTCT Plus provide a
unique window of opportunity
BUILDING ALLIANCES AND PARTNERSHIPS
EXPANDING THE RESOURCE BASE
LEARNING FROM OTHER CHILD AND
MATERNAL SURVIVAL PROGRAMS
LEARNING BY DOING
COMMITMENT
MANTAINING THE MOMENTUM

Each country has its own
particular challenges and we
don’t’ pretend to have immediate solutions for everything. Through UNICEF, we intend
to continue to support countries in kicking off implementation and scaling up plans. As
the IATT on PMTCT which is made up of UNFPA, UNICEF, WHO and the UNAIDS
Secretariat, we intend to learn from our experiences as well as, the successes of similar
previous programmes such as: the Expanded program of Immunisation and Polio
eradication.

We are also not scared or intimidated by the prospect of forging new ground. We know
we can succeed, and now have to make the most of our opportunity to do so.

We have committed ourselves and we want others to do so. In particular we want
governments to deliver on the political commitments that they made at the UN General
assembly

Above all, we intend to keep the momentum created by UNGASS alive. This is our
vision.
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HIV/AIDS,
Pregnancy and Breastfeeding:
Dilemmas for Women in Africa
By Marge Berer
Editor, Reproductive Health Matters
Many thanks for inviting me to this meeting. Most of you will probably not know that in 1991
NORAD among others gave me a three-year grant to produce a book with Sunanda Ray,
currently with SAfAIDS in Zimbabwe, called Women and HIV/AIDS: An International
Resource Book which was published in English, French, Spanish and Portuguese; 14,000
copies were distributed. Although the data in it are old and it went out of print 4 years ago,
people regularly say they are still using it, as it has never been superceded and covers many
issues that remain pertinent today. That book was about HIV/AIDS, sexual and reproductive
health and it was about women and for women. It covered safe motherhood, pregnancyrelated transmission of HIV, sexually transmitted infections, safer sex and dual protection,
and many aspects of reproductive choice. Most of these issues present as much of a dilemma
to women living with HIV and to those providing treatment, care and support for people with
HIV now as they did then. This includes the issues I have been asked to talk about here today.
HIV infection in women of childbearing age
As I prepared this presentation, I tried to think about what was different in 1991 from today in
relation to HIV. Perhaps the most important difference is that it looked at that time as if the
HIV epidemic was going to mushroom out of control and affect all parts of the world and all
men and women equally. In fact, that did not happen.
Instead, data show that of the more than 30 million
people living with HIV worldwide today, 70% live in
sub-Saharan Africa, and of new infections among
children, about 88 per cent are in sub-Saharan Africa.
Unsafe injecting drug use has spread HIV in quite a
number of countries outside Africa in the past ten years.
But as far as sexual transmission is concerned, and
although his may change again in five years' time, at
this point in time HIV is primarily a problem of subSaharan Africa (Pisani, Reproductive Health Matters
2000; 8(15):63-76; reprinted from SAfAIDS News 1999; 7(4):2-10).
Many other things have changed since the early 1990s as
well. The great majority of people around the globe are
aware of HIV and understand what safer sex is, even if
they don't practise it. The natural history of HIV and how
infection occurs is better known and there are many more
treatments for HIV-related illnesses. The most important
of these is HAART (highly active antiretroviral therapy),
usually called 'combination therapy', which for those who
have access to it has prolonged both life and health and
reduced both morbidity and mortality from AIDS quite incredibly in a few short years since
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1996 when it became available. This change in the availability of anti-HIV treatment has
created, in fact, a terrible gap between Africa and the rest of the world in terms of the
prognosis for those who become HIV positive. In all developed countries, Brazil, Thailand
and in other places where the numbers with the virus have stayed relatively low, where the
health systems are still functioning and the economies are not among the poorest, combination
therapy is becoming increasingly available. In Africa, however, where most people with HIV
and AIDS live, access to treatment is next to nil except for a few people with the money and
influence, who are only able to get access to drugs individually from the developed world.
Hence, my talk today will focus on the dilemmas HIV poses for women in sub-Saharan
Africa, especially in relation to maternal health and breastfeeding issues. To do this, I need to
start with the subject of sexual networking and unsafe sex because ultimately, unsafe sex is
what transmits HIV and makes breastmilk unsafe for the infants of HIV+ women.
Sexual networking and unsafe sex in Africa
In every HIV conference, you will hear at least one
speaker say that most women are faithful to their
husbands, which is what women have reported in
numerous surveys. From this, the conclusion has been
drawn that most women are infected with HIV by their
husbands. But had some of the women also had sex
before marriage and been at risk then? According to
Elisabeth Pisani, community-based studies published in
the past few years have revealed a great deal about the
patterns and age structures of HIV infection in various
populations in Africa. They show that a high proportion
of girls are infected with HIV during their teenage years
and before marriage. Indeed, half of all new HIV
infections in women reported globally in 1998 and since
then were in the 15-24 age group (UNAIDS, 1998). With
the exception of Rwanda, HIV infection in adolescent
girls far exceeds that in adolescent boys in sub-Saharan
Africa – by a factor of eight, on average. This means not
only that women are having unprotected sex from very
young ages, a fact that has long been reflected in the high
number of adolescent pregnancies, but also that most girls
must have been infected by men older than themselves,
mostly before marriage (Pisani, ibid).
Pisani deduces from these data that one of the biggest risk
factors for young men in sub-Saharan Africa of acquiring
HIV infection in high prevalence areas is getting married
to a woman who was infected during premarital sex with
an older man. Having more than one partner without practising safer sex is of course also a
risk factor. Indeed, many men commonly say they have had more than one sexual partner both
before and after marriage, thus putting themselves and those women at risk in return.
This has important consequences for safer sex education in Africa. Teaching adolescent girls
to negotiate condom use with their peers may not help them at all if the principal threat to
their sexual health comes from older men. Similarly, older as well as younger men need to
take on board the consequences of their own sexual networking patterns and be much more
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encouraged to change them. The belief that marriage is the safest place for men to have sex
has been underscored by policies on condom promotion across Africa, as elsewhere. These
say that if heterosexual men used condoms in their non-marital and extra-marital
relationships, sex with their wives will be safe. In Zimbabwe, DHS data as early as 1994 show
that condoms were indeed used primarily for non-marital sex, and single men were eight
times more likely to use condoms than married men (International Family Planning
Perspectives 26(4):196-200). Yet the rapid sexual spread of HIV has not been reduced by this,
and these assumptions badly need to be revised.
Condoms
Gven the actual patterns of sexual networking in subSaharan Africa, behaviour change or consistent use of
condoms inside as well as outside of marriage will be
necessary to impact on the epidemic. Making condom use
happen is not just a personal issue for individual men and
women, however, it is also a political and infrastructural
one. Politically, for example, we learn that AIDS was
declared a national disaster in Kenya in the year 2000 yet
the government still decided it would not promote condom
use (SAfAIDS News 2000; 8(1):17). In fact, the failure to
promote condoms is widespread across the region.
But what if the Kenyan government had decided to
promote condoms? A recent assessment of condom
availability in sub-Saharan Africa found that condom
provision by donor agencies has not increased over the past
five years but remained constant at 400-500 million
condoms per year. In addition to these, in 1999, countries
were themselves purchasing a total of roughly 210 million
condoms per year, making a total of about 724 million condoms available per year. That
sounds like a lot of condoms, but in fact it represents just 4.6 condoms per man aged 15-59
per year across sub-Saharan Africa. Distribution, however, is varied. In the highest providing
countries – Botswana, South Africa, Zimbabwe, Togo, Congo and Kenya – the average
number of condoms distributed was 17 per man aged 15-59 per year. Simple arithmetic tells
you that 5 condoms per year per man represents safe sex once every 10 weeks, while 17
condoms per year allows for safe sex per man only once every 3 weeks. It is therefore no
wonder that the HIV epidemic is not under control in sub-Saharan Africa (Shelton &
Johnston, BMJ 2001; 323:139).
The extent of antenatal HIV infection
Considering the early age at which so many women in
Africa are becoming HIV-infected, it is no surprise that as
many as 20-40% of women seeking antenatal care are
testing HIV positive in many countries in the region. The
proportion is far higher than 20% in Botswana, Malawi,
Zambia, Zimbabwe, Burundi, Lesotho, Rwanda, South
Africa and Swaziland. An estimated two million HIV
positive women worldwide were expected to give birth in
1998 alone (Nieburg & Stanecki, 12th World AIDS
Conference, 1998). Add to this the fact that some 600,000
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women are still dying each year from complications of pregnancy, childbirth and abortion
worldwide (WHO, 1996). There is a significant though unquantified overlap between these
two groups of women in many sub-Saharan African countries, where rates of HIV among
women and maternal mortality and morbidity are both high.
The effects of pregnancy on HIV and AIDS progression
In developed countries the great majority of pregnant women with HIV are asymptomatic.
One review of controlled studies, including a French
prospective cohort study with five years of follow-up,
found no difference in the rate of acceleration of HIV
disease in pregnant women as compared to non-pregnant
women (McIntyre HIV in Pregnancy, 1999; Hocke et al
Obs& Gyn 1995). However, one systematic review of 14
years of studies and a meta-analysis of seven studies
found that in developing countries, HIV disease
progression related to pregnancy was significantly more
common compared to developed countries.
The role of HIV/AIDS in complications of pregnancy and
childbirth
In some countries in sub-Saharan Africa, the role of
AIDS is now being studied as a factor in maternal deaths.
Studies have shown that:



AIDS is an important underlying factor in direct
maternal deaths,
AIDS is an indirect cause of maternal deaths in itself,
and
AIDS is a contributor to other indirect causes of
maternal deaths (AbouZahr, 1998).
In South Africa in 1998, the first year in which data were
fully collected nationally, deaths due to AIDS comprised
13 per cent of all maternal deaths; pregnant women who
died of AIDS tended to be younger on average and with
lower parity than pregnant women who died from other
causes (South Africa National Committee on Confidential
Enquiries into Maternal Deaths, 1998). No other country
collects national data this extensively. Smaller studies
have been done, however. In Brazzaville, Congo, as early
as 1993-1994, AIDS was a direct cause of maternal death
in 4.2 per cent of cases, was described as the main
indirect cause of death related to delivery and the primary
mortality factor in pregnant women (Iloki et al, J Gyn
Obs Bio Reprod, 1997). In Bulawayo district of Tanzania,
AIDS was already the fourth leading cause of maternal
death in 1993 (MacLeod & Rhode Trop Med & Int
Health, 1998).
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Direct and indirect causes of maternal mortality and morbidity may be more severe or
debilitating in HIV positive women, and HIV positive women may also be more susceptible
to complications than HIV negative women, especially women with symptomatic HIV
disease. Planned caesarean section prior to rupture of membranes, for example, has been
shown to decrease the risk of perinatal HIV transmission. This makes the clinical decision
whether women with symptomatic HIV infection should have a planned caesarean difficult, as
the risk of morbidity in the woman must be balanced against reducing the risk of HIV in the
infant. This is particularly true where prophylactic antibiotic treatment may not be available
or where access to treatment for post-operative complications may be limited. In addition, in
areas with a 30 per cent HIV prevalence in the antenatal population and a current caesarean
section rate of 10 per cent, both common statistics in the region, the number of caesarean
sections would have to increase several fold to provide the necessary coverage. This would
require huge additional resources in terms of qualified medical and midwifery staff, hospital
in-patient care, etc.
Complications of pregnancy and delivery found among HIV positive (mainly
symptomatic) women as compared to HIV negative women, reported in at least one
study in developing countries, 1990-99
- More severe and more frequent blood loss, sepsis and delayed wound healing after
caesarean section, tubal ligation, laparotomy, and induced abortion
- More urinary tract infection
- Lower fertility rate ratios
- Insufficient weight gain in pregnancy
- Higher rates of ectopic pregnancy , related to the presence of untreated STI
- Greater risk of post-partum haemorrhage and post-partum sepsis
- More frequent and severe anaemia and malaria, and possibly tuberculosis
- Complications of AIDS-related conditions, such as bacterial pneumonia
- Maternal deaths from AIDS and AIDS as a contributor to or underlying factor in maternal
deaths from other causes, including in the late post-partum period (from 42 days to two years
after the end of pregnancy)
Late post-partum mortality from AIDS in sub-Saharan Africa
Women with HIV in several sub-Saharan African countries
have been shown to be at greater risk of dying up to two
years after pregnancy than HIV negative women. For
example, a prospective study of maternal mortality in rural
Malawi (McDermott et al, Am J Trop Med & Hygiene,
1996) found that HIV infection and anaemia were strongly
associated with women dying three to ten months after
delivery.
In a study in 1990-1994 comparing HIV positive and HIV
negative pregnant women from the second trimester of pregnancy to two years after delivery
in Kampala and Harare (Mmiro, 1998), mortality and morbidity requiring hospitalisation
during pregnancy were not significantly different. However, HIV positive women in Kampala
were 31 times more at risk of dying between 42 days and two years after delivery than HIV
negative women and in Harare the relative risk was 18.
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Similarly, higher death rates in women with AIDS were found in a three-year study in an
obstetric ward and follow-up clinic at a large municipal hospital in Zaire (Ryder et al, AIDS
1994). Overall, families in which the mother was HIV positive experienced a five- to ten-fold
higher maternal, paternal and early childhood mortality rate than those in which the mother
was HIV negative. HIV positive women who transmitted HIV to their most recently born
child had lost a greater number of previously born children (mean 1.5 versus 0.5; p< 0.05),
were more likely to have had AIDS at delivery (25 per cent versus 12 per cent; p< 0.01) and
were more likely to die during follow-up (22 per cent versus 9 per cent; p< 0.01) than HIV
positive women who did not transmit HIV infection to their newborn child.
More recently, a randomised, controlled study in Nairobi, Kenya, comparing formula fed and
breastfed infants of HIV+ women also kept data on the mothers up to two years post-delivery
or until they died. Mortality was three times higher in the breastfeeding women (18 of 212
women) than in the formula feeding women (6 of 213 women) , (RR 3.2, 95% CI 1.3-8.1,
p=0.01). The cumulative probability of breastfeeding women dying at 24 months post-partum
was 10.5% compared to 3.8% in the formula feeding group. (Nduati et al Lancet. 2001 May
26;357(9269):1651-5). Further, there was an association between maternal death and
subsequent infant death, even after controlling for infant HIV-1 infection status (relative risk
7.9, 95% CI 3.3-18.6, p<0.001). These findings suggest that breastfeeding by HIV-1 infected
women might result in adverse outcomes for both mother and infant. It has been postulated
that nutritional depletion from lengthy breastfeeding in already malnourished women was at
least one reason for the increased risk to the women.
The role of HIV in adverse pregnancy outcomes
A recent systematic review and meta-analysis of studies on the association between maternal
HIV infection and perinatal outcome, including 21 studies from developing countries (out of a
total of 31), compared HIV positive and HIV negative pregnant women (Brocklehurst &
French, Brit J Obs & Gyn, 1998). Table 1 summarises the results. The extent of HIV disease
progression and immune suppression in the women are important factors in the increased risk
of poor outcomes.
Table 1. The association between maternal HIV infection and adverse perinatal outcomes, summary odds
ratios from 31 studies (10 in developed countries and 21 in developing countries), 1988-1996
Outcome
Spontaneous abortion (4 studies)
Stillbirth (11 studies)
Infant mortality (9 studies)
Low birthweight (17 studies)
Pre-term delivery (22 studies)
Perinatal mortality (6 studies)
Intrauterine growth retardation (12 studies)
Neonatal mortality (3 studies)
Fetal abnormality (7 studies)
Odds ratio
4.05 (95 per cent CI
3.91 (95 per cent CI
3.69 (95 per cent CI
2.09 (95 per cent CI
1.83 (95 per cent CI
1.79 (95 per cent CI
1.70 (95 per cent CI
1.10 (95 per cent CI
1.08 (95 per cent CI
2.75-5.96)
2.65-5.77)
3.03-4.49)
1.86-2.35)
1.63-2.06)
0.7-1.66)
1.43-2.02)
0.63-1.93)
0.7-1.66)
In summary, women with symptomatic HIV infection in developing country settings, where
other direct and indirect causes of maternal deaths are prevalent, may be at increased risk of
maternal death and more susceptible to and adversely affected by obstetric complications,
compared to HIV negative women, and may progress to AIDS and die more rapidly than nonpregnant women. Furthermore, pregnancy loss, stillbirth and infant mortality, whether or not
infants are HIV infected, are also higher, especially for symptomatic women.
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The lack of comparable adverse effects in developed
countries is at least partly because women are generally
in better health, maternity care is of a much higher
quality, complications are treated rapidly, and women
have access to prophylactic, curative and antiretroviral
treatments and are more likely to remain asymptomatic
longer. Hence, they are less likely to experience many of
the problems that women in Africa go through, who have
more and later pregnancies, receive minimal or no
maternity care, inadequate and delayed attention to
obstetric and HIV-related complications, and little or no
access to treatment for HIV/AIDS-related illnesses.
Furthermore, many women in sub-Saharan Africa with
HIV infection are not using maternity services
sufficiently, if at all, in spite of the increased risks. For
example, among 615 adolescents aged 10-19 years who
attended for a first antenatal care visit at two rural hospitals in southern Malawi (Brabin et al,
Acta Obstet Gynecol Scand, 1998), the prevalence of anaemia, malaria and HIV infection was
high, yet less than half (41.5 per cent) came for a supervised delivery.
The high prevalence of HIV in an antenatal population has wide-ranging implications for
public health education and community education. Antenatal, delivery and obstetric care,
provision of safe abortions, the training of maternal and child health care workers, midwives
and obstetricians (Graham & Newell Lancet 1999), the availability of drugs such as
antibiotics, the use of life-saving procedures and the safety of blood for transfusion are all
affected.
The sorts of improvements needed in antenatal and emergency obstetric care and post-partum
follow-up for HIV positive include:
 voluntary HIV testing and counselling which addresses the information needs of HIV
positive pregnant women, including breastfeeding and alternative infant feeding;
 better management of pregnancy, labour and delivery to prevent and treat haemorrhage,
anaemia, sepsis, obstructed labour, delayed wound healing and fistulae;
 early and effective treatment of HIV-related disease, malaria and tuberculosis;
 safe abortion services;
 post-partum/post-abortion contraceptive services;
 universal precautions for infection control and to prevent needlestick injuries;
 safe blood supplies and transfusion of blood and blood products reserved for lifethreatening complications only;
 pre-operative antibiotic prophylaxis for HIV positive women who need surgical or invasive
obstetric interventions, in order to reduce the risk of morbidity from blood loss, infection
and delayed wound healing;
 more aggressive use of antibiotics for treatment of infectious diseases and complications in
HIV positive women;
 awareness that the presence of pneumonia that does not respond rapidly to treatment (i.e.
pneumocystis carinii pneumonia, a rapid killer) in young pregnant women may be a sign of
HIV infection;
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 research is needed on the frequency and timing of malaria treatment in pregnant HIV+
women, to determine whether the currently recommended course needs to be altered for
primi- or multi-gravid women. (Berer, Safe Motherhood Initiatives, 1999)
The right to decide the number and spacing of children: does
HIV make a difference?
Women with HIV in sub-Saharan Africa, including
women with AIDS-defining illnesses, may feel compelled
to continue to get pregnant due to social and familial
pressure to reach the socially accepted family size. In a
qualitative study among antenatal women in Abidjan,
Côte d’Ivoire, for example, most said they were unable to
tell anyone of their positive HIV status, and almost all of
them felt they had to have four children, in spite of fears
for their own health and that of the babies (Aka-DagoAkribi et al, RHM 1999).
A study in Zambia also found that although there was great fear of the risk of HIV, this was
not always associated with the act of conceiving children and did not necessarily influence
actual behaviour or family size preference. On the other hand, in some cases, the threat of
getting HIV had led to decisions to have fewer children. Many people were also worried
about leaving orphans for others to look after or having others leave orphans for them to care
for in addition to their own children (Baylies, RHM No 15, 2000).
The fact that HIV+ women have unwanted as well as wanted pregnancies is sometimes
forgotten or ignored, and getting support for accessing contraception, sterilisation or
termination of pregnancy may be difficult for positive women. Women with HIV who are
forced to seek unsafe abortions or to self-abort may be at increased risk from sepsis,
haemorrhage, perforated uterus and their sequelae; no data appear to exist on this because of
the continuing illegality of abortion in so many sub-Saharan countries. Although women with
HIV infection would qualify for a legal termination of pregnancy on health grounds in almost
all countries, including in countries with restrictive laws, many physicians are afraid to
provide this service openly or at all, or at least admit to doing so, for fear of repercussions.
This means that outreach is greatly restricted, and young, single women are likely to be
particularly disadvantaged.
Discrimination against HIV+ women and men in relation to reproductive choice has also been
reported. Legislation was proposed in Swaziland last year, for example, to make sterilisation
of both men and women found to have HIV mandatory (Lancet 356(9226):320-322), and in
India the right to marry was also threatened by proposed legislation (Roundtable, RHM No15,
2000). These are coercive responses to a difficult situation and must be opposed as unethical.
To promote responsible choices based on full information, in some programmes, e.g. the
AIDS Information Centres in Uganda, couples are tested for HIV and counselled together to
confront the issues facing them, including decisions about future childbearing. HIV testing
prior to a woman getting pregnant is always preferable to testing during antenatal care,
especially when this is late in pregnancy or at delivery, when it is too late for couples to
decide not to get pregnant after all or to seek an early abortion if desired, or even to
understand and make an informed decision about the woman taking antiretroviral therapy to
prevent passing HIV infection to her infant during delivery and infant feeding .
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Prvention of mother to child transmission of HIV (PMTCT)
Vertical transmission of HIV from mother to
infant may occur during pregnancy, delivery
or breastfeeding. Most intervention research to
date has gone into preventing perinatal
transmission, i.e. around the time of delivery.
There are three main interventions carried out
during late pregnancy and at delivery in
developed countries to prevent perinatal
transmission of HIV – antiretroviral therapy
given to the mother and infant, caesarean
section prior to rupture of membranes, and
infant formula feeding in place of
breastfeeding. The combination of these three together has reduced vertical HIV transmission
in developed countries to as low as 1-3% of live births (European Collaborative Study AIDS
2000). In Brazil, where provision of antiretroviral therapy to anyone with an HIV+ test result
who wants it has been required by law in since 1995, a PMTCT programme in the university
hospital in Rio de Janeiro has reported this year that there have been no cases of vertical
transmission of HIV to infants in the past 24 months and as low as 1-2% transmission in the
past five years. (Nogueira et al, 3rd Global Strategies, Abstract 31, 2001)
In Europe, in the past ten years, the extent of PMTCT programme success has been quite
increadible. In 1995 in the combined European programmes, 28% (72/256) of mother-child
pairs received the full ACTG 076 regimen to reduce risk of vertical transmission, rising
significantly to 89% (116/130) by 1999. Use of triple therapy started by women in pregnancy
has increased significantly from < 1% (1/153) in 1997 to 44% (47/107) in 1999. Exposure to
antiretroviral therapy was not associated with prevalence or pattern of congenital
abnormalities (P = 0.88) but was associated with reversible anaemia in the infant (P < 0.002).
The elective cesarean section rate has increased from 10% in 1992 to 71% in 1999/2000. The
vertical transmission rate declined from 15.5% by 1994 to 2.6% after 1998. (European
Collaborative Study AIDS. 2001 Apr 13;15(6):761-70.) Comparably good figures exist for the
USA as well. These programmes have been a success for the mothers as well – not only are
their babies still alive and well, they are also alive and well and able to take care of them.
Efforts to develop less expensive versions of antiretroviral therapy have been tested and put
into place in a growing number of developing country maternity clinic settings, mostly in
urban hospital centres, ithin the last couple of years as well. The success of these programmes
is variable, but they are very new and few detailed published reports are yet available. The
model for these programmes was developed in a joint UNAIDS/UNICEF/WHO package of
six components meant to reduce MTCT of HIV, developed in 1998 (see box below).
UNAIDS/UNICEF/WHO package of six components to reduce MTCT of HIV, 1998
 early access to adequate antenatal care
 voluntary and confidential counselling and HIV testing for women and their partners
 a short course of perinatal antiretroviral treatment (AZT) given to HIV positive women in
the last weeks of pregnancy through delivery (and possibly also to their newborn infants)
 improved care during labour and delivery
 counselling for HIV positive pregnant women, explaining a range of choices for infant
feeding
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Page 24 of 62
support for HIV positive mothers who choose not to breastfeed, to enable them to use
breastfeeding replacements safely, without violating the International Code of Marketing
of Breastmilk Substitutes and related resolutions of the World Health Assembly.
In most of sub-Saharan Africa, most women do not attend for their first and often only
antenatal visit until late in pregnancy, most women do not give birth in a clinic or hospital
unless there are obstetric complications during labour, the number of infants needing perinatal
anti-HIV treatment is much greater, there are often no surgical facilities to do caesarean
sections, the number of staff available for counselling is limited, a substantial proportion of
women do not agree to be tested for HIV, a further number who are tested do not return for
their test results, and yet more do not return for the treatment let alone to give birth in
hospital. In short, the UNAIDS package is an ideal waiting to be achieved but it is far from
the reality of many African women. The result is that the intervention itself has far less of an
impact than it could and should have. A report of data from four health centres published this
year from the Ivory Coast (Msellati et al Bull WHO 2001) showed this:
Four health centres, Abidjan, six-month period in 1998-99
 4309 pregnant women attended for first antenatal visit
 3756 had individual pre-test counselling = 10% of women delivering in Abidjan in
same period
 3452 agreed to have an HIV test (2998 negative, 445 positive)
 2384 returned for the result (71% of them HIV negative, 60% HIV positive)
Of 445 HIV+ women:
 177 women did not return for test results
 268 were informed of their HIV status, had post-test counselling and were informed of
possibility of preventing MTCT
 124 presented at least once for consultation after that
 2 had miscarriages; 2 delivered before treatment could be given; 4 were seen again
only after delivery; 16 dropped out
 100 started treatment in late pregnancy
 20 were not seen again before delivery
 80 completed treatment up to delivery = 78 live births, 3 stillbirths
 61 completed intrapartum treatment as well
Of 84 infants at age 6 weeks (78 + 2 delivered before ZDV + 4 seen again only after
delivery):
 56 were breastfed from birth (3 died within a week of birth) >> 16 switched to
artificial feeding within 6 weeks)
 7 were mixed fed
 21 were artificially fed (2 died at 4 wks and 6 wks)
These results mean that 14% of infants (61) of 445 HIV positive mothers benefited fully from
one of the three interventions used in the developed world (perinatal antiretroviral treatment)
and 5% of infants (21) benefited fully from two of the three interventions used in the
developed world (antiretroviral treatment plus formula feeding), while several others
benefited partially.
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Limited success must be expected, given the circumstances in the countries concerned, and
some infants are benefiting. Whatever HIV education and counselling in themselves women
are getting are also of benefit for the women. Important questions have been raised about the
public health impact of such programmes which have not yet been answered. However, it is
hard to insist on a public health impact when it is infants who are involved and it is also too
early to pass judgement. Health professionals and the agencies involved are working hard to
reach as many pregnant women as possible within difficult circumstances, and more support
for these efforts is needed. On the other hand, the question of infant survival in the longer
term, even if they have successfully escaped HIV infection, remains to be answered as well.
Reduced infant survival when mothers do not survive
It has been said that prevention of MTCT of HIV is an attempt to rescue infants when it is not
possible to rescue adults. Obviously, women will want to prevent HIV infection in their
children, whether or not anything is being done for their own health.
Few studies have followed both mothers and their infants for very long once pregnancy is
over. Furthermore, PMTCT interventions often look at mothers only insofar as they are
willing to accept antenatal HIV testing and at least one of the three recommended
interventions. The literature is mostly silent about the health of women following pregnancy,
let alone their deaths and what happens to their babies. Two examples are given here. First, a
controlled study in the Gambia that followed infants up to 18 months of age found that the
number of infant deaths was significantly higher among children of HIV+ mothers (16%) than
among HIV negative mothers (8%). Mortality due to infant HIV infection was high but was
also related to maternal death, independent of HIV infection (Ota et al 12th World AIDS
Conference 1998, Abst. 12153).
A more recent study in Uganda found no significant difference in the survival of infants born
to HIV negative mothers and HIV negative infants born to HIV+ women in the first year of
life. However, differential mortality was found in the second year of life (Brahmbhatt et al,
3rd Global Strategies, Abstract 59, 2001).
Deaths from AIDS have increased infant mortality
levels in all developing countries where HIV in
women of childbearing age is prevalent and the fact
that infants die more often without their mothers is
not true only in relation to AIDS. And many, many
mothers are dying. By the end of 1999, there were
11.2 million AIDS orphans in Africa (SAfAIDS
News 2000; 8[2]:7) and more recent data, as
reported during this meeting by Prof Gundersen, are
that that figure has risen to 12.1 million since then.
This is an unconscionable situation.
Breastfeeding and formula feeding: the risks of infant
mortality
Prior to the advent of AIDS, infant mortality levels had been falling, in large part due to the
success of campaigns in support of breastfeeding. Breastfeeding protects infants from
respiratory infection and diarrhoeal disease, the main causes of infant mortality where there
are unsafe conditions for replacement feeding.
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In 1992, in acknowledgement of the risk of HIV
transmission, messages promoting universal,
exclusive breastfeeding for the first 4 to 6 months of
life were revised and became more complex. HIVpositive women who could safely use breastfeeding
replacements are now advised not to breastfeed,
while others, for whom replacements are
unavailable or risky, are advised that they should
still breastfeed. Until the last couple of years, there
was still mostly anecdotal evidence as to what was
happening on the ground or how much women understood about the relative risks of
breastfeeding versus formula feeding and how practice was changing. A few studies are now
available, mainly from the Third Global Strategies conference in September 2001 in Kampala.
These look mainly at what HIV+ women are thinking and doing rather than the whole
community of women, but at least this is a start.
In Zimbabwe, a study published three years ago found that as a result of successful
breastfeeding promotion campaigns, women who gave birth in hospital had to start
breastfeeding before they were discharged, and no alternatives were offered. A qualitative
study which asked HIV positive women how they felt about transmitting HIV infection to
their infants found that they considered both breastfeeding and the prevention of transmission
of HIV to their babies important. However, they rejected the assumption that women in
developing countries had no choice but to breastfeed. They believed that breastfeeding
promotion among poor women was sometimes ritualistic and failed to take account of
individual needs and circumstances. The thought that they may have infected their infants
through breastmilk was agonising to them. On the other hand, they were reluctant to resist
pressure to breastfeed because it might lead to disclosure of actual or feared HIV status.
Women with children who were HIV positive expressed great regret that they had not formula
fed their infants (Misihairabwi, SAfAIDS News 1997; 5(3):14).
The problems of the cost of formula feeding, social pressures to breastfeed by family and
friends, and unwillingness to disclose HIV+ status were all still strongly affecting HIV+
mothers in a more recent study in Zimbabwe, where 24 of 30 women in one small study were
still breastfeeding at 9 months. (Tavengwa et al, 3rd Global Strategies, Abstract 304, 2001)
At one hospital-based programme in Chinhoyi in Zimbabwe, women were offered free infant
formula. Of those who did cup-feed, the study found that the babies could thrive if fed
appropriately. Those infants that did not thrive had signs of HIV infection. However, mothers
had difficulties in cup feeding, especially in relation to night feeds, travel, working and the
attitudes of others and the abstract gives the impression that the role of nurses in counselling
and providing support was very important. (Mhloyi et al, 3rd Global Strategies, Abstract 315,
2001)
Focus group discussions with 208 women attending maternity clinics in three rural sites in
south-west Uganda found that the women thought commercial milk formula was a good thing,
but they could not use it because it was too expensive and was in any case unavailable in the
rural areas. Importantly, most women in this study were still unaware that HIV could be
passed to an infant through breastfeeding. (Medical Research Council Programme on AIDS in
Uganda Ann Trop Paediatr. 2001; 21(2):119-25).
A study carried out in Cape Town South Africa found that, after the risks were explained to
them, 83% of 88 HIV+ women with children expressed a preference to formula-feed their
next child to avoid the risk of HIV infection. Yet less than half of them had running water
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inside their homes and almost half said they could not afford to buy milk powder. The women
also said they received less information from health workers about the risks of not
breastfeeding than about the risks of HIV infection through breastfeeding (Kuhn et al AIDS
1999; 13:144-46).
Recent discussions with 80 HIV+ antenatal women in Soweto, South Africa found that the
majority had chosen to formula feed their infants to avoid breastfeeding transmission of HIV,
and they believed most Soweto households had the facilities to prepare formula safely. They
also considered exclusive breastfeeding a totally novel concept and felt it would be very
difficult to get women to practise it. Mixed feeding that included sugar water and porridge
was the norm in their community. (Connell, Ngobeni & Gray, 3rd Global Strategies Abstract
15, 2001)
Similarly, in one study in rural KwaZulu Natal, of 113 mothers of liveborn babies, 53/113
supplemented breastmilk within the first 48 hours after birth and by 6 weeks of age, only 3/52
babies had been exclusively breastfed since birth. Additional feeds were introduced most
commonly because the baby was thought to be unsatisfied (Bland et al 13th World AIDS
Conference 2000, Abst WeOrC497).
In Kenya, in the same randomised study by Nduati of breast versus formula feeding,
mentioned earlier, three quarters of 195 women randomised to formula feeding did so fully
and said they had never breastfed their babies. Those more likely to comply were older, had
higher parity, and had more advanced HIV disease. (Nduati et al 3rd Global Strategies,
Abstract 302, 2001) Nduati has also reported from Kenya that among 660 women in two
district hospitals attending well baby clinics, at 6 weeks of age some 80% of breastfeeding
infants were being given water, and substantial minorities were also getting glucose water,
whole milk and solids. The women also reported experiencing breast discomfort and
problems, as follows: 3% of women in one hospital and 12% in the other reported cracked
nipples, in one hospital 8% reported mastitis and 3% breast abcess, and in the other hospital
23% reported engorgement during the first 6 weeks of breastfeeding. These problems would
probably contribute to breastfeeding transmission of HIV and make counselling and support,
including to use alternatives, crucial. (Nduati et al, 3rd Global Strategies, Abstract 331, 2001)
Finally, a review of data from all five sites in Uganda that are carrying out a PMTCT
intervention since January 2001 found that use of formula feeding was higher in urban than
rural sites. The ability of the clinics to provide short-course antiretroviral treatment and
counsel on infant feeding was highly dependent on human resource capacity, and the rural
sites suffered from lack of capacity a good deal in this regard. (Onyango & Magoni, 3rd
Global Strategies, Abstract 306, 2001)
There was talk at the 12th World AIDS Conference of centralised distribution of six months'
supply of milk powder, using generic packaging with no commercial labels, and making it
available only on prescription for women who have had a positive HIV test. Although milk
powder is being supplied to HIV+ women in Thailand and Brazil, and in some pilot studies in
Africa, such plans are not likely ever to reach fruition in most of sub-Saharan Africa because
of the prohibitive costs involved in obtaining and distributing milk powder and in counselling
and supporting so many women to use it safely.
What do studies from countries in other regions add? In India, where HIV/AIDS programmes
are much newer, a study in PMTCT programmes in 11 government medical colleges in five
states found that about a third of women were opting to breastfeed following counselling and
short-course perinatal AZT treatment, while the rest opted for replacement feeding, mostly
using homemade formula from cow's milk. (Joshi & Vincent, 3rd Global Strategies, Abstract
102, 2001) A study in Pune, India, found a high rate of early post-natal morbidity in nonCentre for Health and Social Development
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breastfed infants of 181 HIV+ mothers, greater than in breastfed infants; reasons for this were
not described in the abstract, however. (Phadke et al, 3rd Global Strategies, Abstract 347,
2001)
In Thailand, in contrast, some 35% of all HIV+ women who had delivered in 11 rural
hospitals in the last 12 months, 162 women, were interviewed. Despite almost universal
breastfeeding in Thailand, all women reported infant formula use with no problems mentioned
and only 6% reported ever breastfeeding. Many had the same concerns about disclosure and
lack of support for their decision as African women, however. It is also interesting to note that
among these same women, 80% had disclosed their HIV status to others, with mostly
beneficial consequences; 90% reported they wanted no more children and half had already
had a tubal ligation. (Nolan et al, 3rd Global Strategies, Abstract 325, 2001)
What is often forgotten is that it is not only identified HIV positive women who need
counselling on infant feeding alternatives. The 'spillover' effect among women in sub-Saharan
Africa who do not know their HIV status but who fear or believe they may have the virus is
serious. If they too decide not to breastfeed, the public health benefit of breastfeeding may be
reduced or reversed among their infants. Hence, where HIV is prevalent, all pregnant women
need counselling on the alternatives, so that they can assess the benefits and risks of the
various options. Those women who are not willing to be tested for HIV and who decide not to
breastfeed will also need access to free or subsidised milk powder to avoid a further negative
impact on infant survival (Cutting, J Trop Ped 1994; 40(April):64-65). Whether or not
alternative means of infant feeding should be made available to every pregnant woman who
requests it should therefore be a matter of public debate and policy.
In every country, the situation is different though only to some extent. The problems faced by
women living in poverty who have attempted without support to use breastfeeding
replacements have not been investigated widely or in depth in recent years. On one hand, in
much of sub-Saharan Africa, even the most basic public health problem of all, lack of access
to clean water, remains an unresolved problem. Supplying baby milk powder to HIV-positive
mothers without violating the International Code of Marketing of Breastmilk Substitutes is
also problematic. On the other hand, compared to 15-20 years ago, when such studies were
last carried out, women are more educated and have comparatively greater access to health
information and health services. The studies summarised here indicate that women feel able to
take informed decisions about infant feeding given the necessary information. Considering the
dilemmas facing them, the provision of such information is crucial and their choices must be
supported. There are no easy answers nor is there one answer only.
Discussion
Breastfeeding prevents millions of infant deaths each year throughout the world, but it also
causes at least one-third of all paediatric HIV infections. The first randomized trial of
breastfeeding versus formula feeding, in the one which reported an increased risk of late
maternal deaths in breastfeeding mothers, demonstrated an improved outcome for the babies
of HIV-positive mothers who were assigned to formula feeding. Several conditions must be in
place and accepted before formula feeding can increase HIV-free survival, however,
especially outside of a controlled trial. Not all sub-Saharan African countries (or individual
women) can meet these conditions. As with so many other things, being rural and poor is a
major disadvantage. Hence, in the short term at least, many think that efforts to make
breastfeeding safer would probably benefit a greater number of African babies. (Humphrey &
Iliff Nutr Rev. 2001 Apr;59(4):119-27). The question is, how can breastfeeding be made safe
for infants of so many HIV positive women?
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A major, unresolved problem in dealing with these dilemmas is the lack of consensus, which
sometimes turns into almost a battle, between organisations that want to continue to promote
breastfeeding and AIDS specialists who advise women not to breastfeed if they can possibly
use an alternative feeding method safely. At one extreme, there is still what amounts to semidenial that the risk of HIV infection through breastfeeding is high. Others, who do not go this
far, have espoused the results of an as yet unconfirmed study in Durban in which it was found
that exclusive breastfeeding was significantly less risky than mixed feeding and not much
more risky than formula feeding (Coutsoudis et al Lancet 1999). While the difference in risk
between exclusive breastfeeding versus mixed feeding is plausible for biological reasons, the
fact that formula feeding was almost as risky as exclusive breastfeeding – and quite a lot of
the formula fed babies in this study were HIV infected – remains unexplained. Thus,
confirmation is very important before the results can be relied upon.
On the basis of Coutsoudis' findings, and what I believe to be a partial misreading of these
findings, some people are claiming that exclusive breastfeeding is as safe as formula feeding.
This ignores all the accumulating data which shows that breastfeeding does increase the risk
of HIV transmission from women to infants substantially, especially in sub-Saharan Africa
where the extent of breast disease and higher rates of symptomatic or advanced HIV disease
in the women themselves adds to the risk.
At the same time, those supporting
breastfeeding stress the costs, both healthrelated and social, of not breastfeeding for
both woman and infant (La Leche League,
Global Strategies 2001: Statement on
breastfeeding and HIV). While no one wants
to deny the costs to women and infants of
not breastfeeding, the conclusion is not that
all women must still breastfeed. As hard as
it is to swallow, I believe the UNAIDS
recommendation that exclusive
breastfeeding should be recommended only
for women who cannot afford or cannot
manage to carry out formula feeding safely is the best we can make at this time.
Furthermore, the recent emergence of growing evidence that very few women in fact
exclusively breastfeed in sub-Saharan Africa, or do not do so for very long (only some days or
several weeks), means that the promotion of exclusive breastfeeding would present a major
challenge in itself. Changing the culture and even the perceived necessity for mixed feeding
may be as hard as supporting women to formula feed safely. If as seems to be the case in the
years following a birth, HIV positive women in sub-Saharan Africa often fall ill or are
hospitalised with HIV-related illnesses, it is impossible to suggest that they breastfeed
exclusively, especially if it increases the risk to their own lives, as Nduati's data shows.
There are some people in the field who feel that infant feeding method is secondary to the
need to provide sufficient antiretroviral therapy so that all pregnancy and breastfeeding
transmission is reduced as much as possible and women's lives also prolonged.
Discussion has begun on the relative merits and disadvantages of short course ZDV, one-off
treatment with nevirapine (possibly given universally to overcome women's reluctance to
cope with this decision at the time of delivery) or the ongoing use of combination therapy by
the woman that would benefit both her and the infant. Trials of combination therapy to benefit
the mother and infant in developing country settings, with the first priority being to make
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breastfeeding safe, are being planned now. Questions of when it is best to start therapy –
before pregnancy without stopping treatment during the first trimester, or starting from the
end of the first trimester of pregnancy to avoid possible congenital defects – and when to stop
therapy, if at all – are taking place among experts already.
Furthermore, a totally different trial is being proposed that would give infants an anti-HIV
vaccine as another means to prevent breastfeeding transmission and others are being
considered which would give infants the equivalent of post-exposure prophylaxis after birth –
both to prevent perinatal transmission and also to cover at least the early months of the
breastfeeding period.
My view is that making breastfeeding safe through antiretroviral therapy is a preferable longterm solution to the prevention of mother to child transmission of HIV in Africa as elsewhere,
as long as it is also saving women's lives, but like all the interventions required to address
HIV in Africa, this one requires a great input in information and resources, both human and
technical, to succeed. In this absence of such input, it is most likely that women will do what
seems best in their own circumstances, with whatever information and support they manage to
get, and in ways that do not jeopardise their position in their communities. For outsiders to
"push" one solution or another, i.e. breastfeeding or an alternative, no matter how "correct" it
may seem on paper, is an error. Exclusive breastfeeding by HIV+ women may be safer than
formula feeding but it is not safe by whatever measures. In any case it is not being done even
by 80-90% of women who are still breastfeeding. In these circumstances, formula feeding
must not be condemned but supported, including by those who wish mightily that it "were not
so".
In developed countries the majority of pregnant women have access to effective anti-HIV
therapies, including during pregnancy, and a high quality of maternity care. Although no
controlled trial data exist, use of combination antiretroviral therapy by women for their own
health at adult doses during pregnancy and afterards also reduces perinatal transmission of
HIV almost entirely and is highly likely to make breastfeeding safe as well. Obviously,
women take these drugs only when their own health requires it – usually only in the presence
of symptoms and low CD4 counts. However, these treatments and services, both preventive
and curative, are considered too expensive to provide in the developing world, where the
public health need in terms of numbers is the greatest. Treatment with combination
antiretroviral therapy would help to keep HIV positive women in developing countries
healthier longer, but these are not available except through private purchase and personal
contacts, with the exception of a few countries, most notably Brazil, where treatment must be
provided by law to anyone with a confirmed HIV+ test result. Yet in the poorest countries,
even the cost of essential antibiotics is beyond the capacity of health systems to provide.
Greater priority to making these therapies available to pregnant HIV positive women in
developing countries is being called for; negotiations with pharmaceutical companies to
provide these drugs at affordable public sector prices or the right for countries to produce their
own generic versions of these drugs are slowly being moved higher on the international health
policy agenda (Personal communication, three groups of researchers, November 2001).
At the same time, interventions that are available and appropriate in developed country
settings cannot simply be recommended for developing country settings, where the quality of
antenatal, delivery and post-partum care is poor and limited. In these settings, HIV and AIDS
make an already difficult situation even more difficult. Needs assessments and priority setting
must determine necessary improvements and how and when these can be implemented
incrementally.
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From the women's point of view, however, it is important not to forget that the numbers of
HIV+ women having unwanted pregnancies must be at least as high as in the population of
women generally in their countries. A study about to be published from Zimbabwe of
community-based focus group discussions with HIV+ women found that many would have
preferred to stop childbearing but that a combination of partner and community pressure plus
the lack of permission to use contraceptives or be sterilised and the lack of access to safe
abortions prevented many of them from exercising this choice. Prevention of unwanted
pregnancies is also a form of prevention of mother to child transmission of HIV and one that
deserves more attention.
An integrated approach to women's reproductive health brings into sharp focus the need to
address HIV/AIDS in women in the context of safe motherhood and broader reproductive
health initiatives – in accordance with best practice in reducing maternal mortality and
morbidity, promotion of safer sex and condom use, access to the means of controlling fertility
and treatment and care for pregnant women with HIV and AIDS and their infants.
Note
This presentation is based on (1) my paper "HIV/AIDS, Pregnancy and Maternal Mortality:
Implications for Care" in Safe Motherhood Initiatives: Critical Issues, Reproductive Health
Matters, 1999; (2) my paper "Reducing Perinatal HIV Transmission in Developing Countries
in the Context of Antenatal and Delivery Care, and Breastfeeding: Supporting Infant Survival
by Supporting Women's Survival" in the Bulletin of the World Health Organization,
December 1999; and (3) the Abstract Book of Third Global Strategies for Prevention of
Mother to Child Transmission of HIV, Kampala, September 2001; and (4) other papers from
the published literature.
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PMTCT – a mother’s perspective
Mary Okoth
Trainer and consultant
London, UK
In my presentation, I gave a mother's perspective on the whole setting. It was more of
my own personal experience. Some of the issues I highlighted were as follows:

Lack of access to treatment for mothers in poor resource
countries and treating the mother for the benifit of the child.

Pregnancy is usually the happiest time for a woman and
it's the least time any woman would like to be told 'you are
HIV positive'.

Health personnel. The importance of and need for informed
and empathetic obstetrics consultants, HIV consultants and
midwife.

Information needs to be given to women to enable informed decisions and choices
especially when it comes to breast feeding, ceasarian section and ART in pregnancy.

Counselling: The pros and cons of testing. Treatments in pregnancy can reduce
transmission of the virus to the unborn child but what issues does it bring up for the
mother. What about issues around resistance and long trem effects of the drugs to the
unborn child. The majority of women leave the counselling room without
understanding what the counselling was about. As an African woman, when I have
issues, I talk to a family member. It is foriegn to sit with a complete stranger. Basic
concepts fo counselling have to be explained to the mother.

Disclosure to partner and other children. Who will need to know about the
diagnosis. Reaction of partner. Most women are considered transmitters of the
disease. The majority of HIV positive women acquire HIV in their marital beds. But
women have been called prostitues, labelled and ordered to leave their marital home.
Violence usually errupts. Stigma associated with HIV /AIDS is still high in most
countries and communities and women are considred to have brought shame in the
home. There are situations when partners sleep in separate rooms or living rooms.
The stigma is related to lack of education and ignorance.

Issues around safer sex need to be addressed and negotiated and this is left to the
woman.

Breastfeeding. Women meed to be empowered and offered information and skills to
address issues around not breastfeeding. When women do not breast feed and are
offered CS they are labelled and treated differently by those around them.

The need to test other children if this is not the only child. Ongoing treatment for the
mother if she needs it. Who will look after this child if the mother dies and how many
orphans will we end up with.
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Conclusion

Empowerment. Women need to be empowered. Several positive women opt not to
tell partners because of what they have had off in the p[ast. The relates to past
experiences.

Peer Support. Women need to meet other women in a similar situation. Nothing is
more powerful. One realises that one is not alone and is able to learn from and share
skills with other women. Out reach for women who can't access groups.

Partner notification. Why can't the test be offered at the same time at a different site
to both partners. Then there would be less blame. In addition, there are hardly any
support services for men. Sign positing and referrals. Ongoing support to be enabled
and empowered. Women need to develope new skills and offered support both
practical and financial.

Confidentiality needs to be respected and addressed at all time.
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Breast-Feeding and
the Dilemma Posed by AIDS
Marina de Paoli
PhD Candidate
University of Oslo
Aims with the Presentation





Breast-Feeding and MTCT/HIV in Tanzania
Methods and Subjects
Aims with the Study
Results / Experiences
Concluding Dilemmas
Breast-feeding in Tanzania






Strong tradition of breast-feeding
97% of children have been breastfed
Provides up to 40 % of the energy-intake in the second year of life
Median duration of breast-feeding: 22 months
Breast-milk substitutes not commonly used
Exclusive breast-feeding not common
HIV/AIDS and MTCT in Tanzania



Severely affected by the HIV/AIDS-epidemic
Heightened risk for women
15.1 % HIV+ (urban antenatal clinic, Kilimanjaro) 1993
Methods & Subjects
(Field-work: June - Sep 1999)




A structured questionnaire survey
Interviews conducted by five trained nurses from the Kilimanjaro Christian Medical
Centre (a regional referral hospital)
Systematic selection of 500 pregnant women attending 9 prenatal clinics in an urban
and rural setting
7 Focus group discussions
Aims with the Quantitative Study


To measure pregnant women’s knowledge of the benefits of breast-feeding and their
intention to breast-feed
To assess awareness and perception of the risk of mother-to-child-transmission
(MTCT) through breast-feeding
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
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Page 36 of 62
To explore which infant feeding option is perceived as the most feasible for HIVpositive women
To investigate perceived conflicts of the revised WHO Guidelines as seen by pregnant
women (attitudes, social norms, perceived self-efficacy)
To explore socio-demographic differences
Methods and Subjects
(Fieldwork aug 00 - jan 01)



Qualitative in-depth interviews with 25 HCW/counsellors involved in a local PMTCTtrial
Interview guide & tape recorder
Grounded Theory
Aims with the Qualitative Study





To investigate how health-care workers perceive the feasibility of implementing the
revised guidelines (ethical and cultural).
How do health-care workers counsel HIV-infected women and what impact does it
have on women’s feeding decision?
What is the most feasible alternative to breast-feeding as perceived by HCW?
How are women empowered and supported in their decisions to prevent MTCT of the
HIV-virus?
Are there negative consequences for women who avoid breast-feeding and how are
they mitigated?
Results
de Paoli M, Manongi R, Helsing E, Klepp K-I. Exclusive Breastfeeding in the Era of AIDS.
J Hum Lact 2001;17(4): 313-320.
Breastfeeding results




Bf duration (n = 309):
23.7 -+ 8.9
Intention to breastfeed:
32.3 -+ 9.8
17% “fluids other than breast milk were not necessary during the first 4 months of
life” (Significant differences urban vs. rural /no formal education vs. secondary
education)
46 % added water in addition to breast milk after a few days (Significant differences)
Infant Feeding Options
Infant feeding
options
Continue to bf
Cow milk
BMS
HEBM
Wet-nursing
Unsure
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General
feasibility (%)
0.0
97.6
1.2
0.6
0.2
0.4
Post Office Box 133 Sentrum, N-0102 Oslo, Norway
Personal
choice (%)
0.2
95.8
1.6
0.8
0.2
0.4
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Knowledge
Knowledge of MTCT
% of resp.
during pregnancy
90%
during birth
66%
through breastfeeding
90%
through breathing
37%
VCT




29.0 – 39.0% would agree to VCT
35.9% VCT during pregnancy is a good idea
“The good counsellor” (PMTCT - trial)
Targetting the weakest link
Risk-perception


92.6% regarded AIDS as a big threat to the community (questionnaire)
The majority perceived themselves at great risk of contracting AIDS/HIV (FGD)
Stigma





49.3% strongly agreed to the statement ”AIDS should be kept a secret within the
family”
53.1% strongly agreed that ”an HIV+ person would hide this fact to protect herself
from the social consequences”
72.7% had at some time witnessed or experienced that people with AIDS had been
avoided, rejected,sent away or on othe way been treated badly
65.9 % strongly agreed that they would not show in public that they did not practise
breastfeeding but would hide away while feeding the child.
70.7% strongly agreed that they would lie about the reasons for not breast-feeding.
Dilemmas








There exists a strong breast-feeding practice and breast-milk is highly valued by all
women
The young, of low parity, educated and urban women had significantly lower intention
to bf
Cow-milk was perceived as the most feasible infant feeding alternative for HIV+
mothers – PMTCT – trial: continue to bf
There exists a high awareness of MTCT of the HIV-virus
It is seen as a complicated choice not to breast-feed (Go beyond the mother?)
Concealing HIV-status / Stigmatization
Exclusive breastfeeding - a rare practice / contradictory message
MTCT of HIV may further complicate this recommendation?
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Challenges involved in the
implementation of a
PMTCT programme
Experience from Moshi urban district, Kilimanjaro, Tanzania
Sia Msuya
PhD Candidate
University of Oslo
Background information-district






Population:
Women 15-49 years:
PHC with ANC care:
ANC care attendance:
Deliveries per year:
Deliveries at health facilities:
190,000 people
53, 000
10, with 1 district and 1 referral hospital
99%
9,000
96%
MTCT-approximation


HIV prevalence:
11%
Transmission rates:
24-54%
o 9,000 pregnant women
o 990 HIV positive
o 240 to 540 transmit the HIV infection
Challenges




Health care facilities
Health care workers
Women attending the clinics
Community
Health care facilities-PHC






Overcrowded /busy waiting rooms
No counselling rooms- privacy
Minimum package of care; Hb/grouping, syphilis screening, BP, TT, pelvic exam
at 1st visit, nutrition & breastfeeding advice.
Basic supplies- gloves, speculae, syringes, ANC booking cards are limited
Laboratory facilities- all had rooms but only one was functioning. No trained
personnel and shortage of supplies. None had HIV tests whether rapid or ELISA.
Record keeping-weakest aspect especially at antenatal/EPI sections. No patients
files/card. No designated place for record keeping.
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Delivery- women deliver where they like and not at PHCs where they attend ANC
care. No co-ordinated referral system. (tracing of positive women)
Postnatal care for women- is theoretical in papers only.
Health care workers aspect




Understaffed e.g. 1 nurse serve about 40-50 pregnant women
Trained counselors- few, even if present do not have time due to busy clinics
In job training- not regularly done, e.g. 30 interviewed, only 2 had training in
MTCT/HIV care
Low pay & motivation
Women aspect



Some book very late for ANC care
Not used to be examined or asked questions apart from fetal monitoring
Not accompanied by partners from ANC- Delivery-EPI and child monitoring and in
FP issues. Male involvement is key to success for PMTCT.
Positive




High ANC care attendance
Nearly 100% hospital deliveries
Time for health education daily before starting services
Women willingness to participate if there is a health gain
Overcome












Change in practice to fit counseling both pre/post test in the clinics
Group counseling or individual counseling?
Balance between real consent and the fear of agreeing to be tested just to please the
HCW?
NVP dispensing especially for children
BF advice with contradictory messages?
How to involve men?
Great effort and input needs to come from the government
Training
Supplies
Rapid HIV tests
Community mobilization
Regular medical care for infected people
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Should the prevention of mother to
child HIV transmission be a priority
in Uganda?
Dr. Lydia Kapiriri, MD
PhD Candidate
Unniversity of Bergen, Norway
Priority setting
Priority setting has been defined as who (in this case the baby) gets what (Anti- retro viral)
and at whose expense (who pays and at what opportunity costs) (Williams et al, 1988).
Certain criteria has been suggested namely the necessary- expected outcome, with or without
treatment, treatment costs; The contentious- age, lifestyle, responsibility, social needs,
productivity, residential status and ability to pay. And the unacceptable- sex, race, religion
and beliefs, social status (Norheim, 1996). Because the demand for health care exceeds the
supply of resources allocated to finance it, setting priorities is a problem for every health care
system in the world, more so in low income countries like Uganda.
Back ground
Uganda is a low -income country, with 46% of the population living in absolute poverty. The
social economic indicators still remain poor.
Table 1: Uganda Social Economic indicators
Indicator
Population
Annual growth rate
Fertility rate
GDP
Literacy rates
Infant mortality rate
Maternal mortality rate
Life expectancy at birth
Access to health facility
Health infrastructure
Per capita health expenditure
Value
22,210,400
2.5%
7%
$250
55%
97/1000
500/100,000
49 years
49%
104 hospitals, 250 health centres, 2 palliative units
and others
$7-12
Source: Background to the budget, 1999/2000 and National health policy 1999.
Status of women
Although there is commitment to empower and improve the status of women in Uganda,
women still remain a vulnerable population, lacking financial independence, access to health
care and bearing most of the health care burden and the burden of disease. Although anteCentre for Health and Social Development
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natal attendance remains high (95.6% in urban and 89.5% in rural areas) deliveries supervised
by a trained medical worker still remain low (79.7% in urban and 32.6% in rural areas
(UDHS, 2001). . Most of the mothers(74%) exclusively breast feed their babies at least for the
first 3 months (DHS, 2001)
Health indicators
Diseases of poverty dominate the epidemiological picture and these affect mostly women and
children. The leading causes of burden of disease include maternal and peri- natal causes
(20.4%), Malaria (15.4%), Acute lower respiratory infections (10.5%), HIV/AIDS (10.5%)
and diarrhoea diseases (8.4%) (MOH, 1999).
Based on the BOD, the government has defined an essential health care package to which
universal access is to be ensured. Prevention of mother to child transmission of HIV is one of
the strategies, among others. However, financing of the package is still a problem (MoH,
1999).
HIV/AIDS in Uganda
HIV trends among ante- natal women in Uganda
1989- 1999
35
HIV infections rates (%)
Uganda has a ”successful” story in the
control of HIV/AIDS. The prevalence has
declined from 30% to 7% (MOH, 2001).
The main mode of transmission is heterosexual but MTC accounts for 14% of the
transmission. Of the people living with
HIV/AIDS, 51% are women and 7% are
children under 15 years (UNAIDS, 2000).
The political commitment, effective IEC and
promotion of condom use, treatment of
STI’s, sex education in schools are some of
the reasons for this decrease in prevalence
(MOH, 2000).
30
25
20
15
10
5
0
PMTC is another strategy; here Nevirapine
Time in years
is advocated for. It costs about USD $45 (all
costs included, but the drugs only cost about
$4) . So far only 3,000 women have been able to access the drug. Plans for expansion are
underway (CDC- Uganda, 2001).
Table 2. Cost-effectiveness of Nevirapine
Parameters
1. Epidemiological
Intervention efficacy (% reduction in
transmission)
HIV- 1 sero -prevalence
Perinatal and early post natal transmission
Average life expectancy
2. Economic
Cost of nevirapine per woman
Cost of voluntary counselling and testing
Cost per HIV-1 case averted
Cost per DALY
(Source, Marseille et al, 1999)
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Base-case estimate
47.0%
5- 30%
25.1%
44 years
$4.00
$7.30
$138
$5.25
Nsambya
Mbarara
Mbale
Matany
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Given this situation, should PMTC still be a priority? We explored this through group
discussions. The purpose was to establish a local criteria for priority setting, recommended by
the discussants and also test a deliberative model for priority setting in Uganda. We held 10
group discussions but for purpose of this presentation we have concentrated on responses
from 3 groups namely the women, the people living with HIV/AIDS (PLWAH) and the
planners.
Study Findings
Results I
Recommended Criteria for priority setting by the different groups included:









Effectiveness of available intervention
Prevalence of condition
Conditions affecting vulnerable populations (women and children)
Equity
Severity of the condition (in terms of fatality)
Cost of intervention
If condition is preventable
Age most affected
Availability of treatment
Was this reflected when confronted with actual disease conditions? We explored this through
the group discussions.
2. Nine conditions and interventions were selected for which evidence was searched with
regards to people most affected, the magnitude of the problem and the cost- effectiveness of
the available interventions.
Table 3: Selected conditions and their interventions
Condition
Intervention
Pneumonia
Integrated management of childhood illnesses
Depression
Tricyclic Anti- depressants
Mother to child HIV PMTC using Nevirapine
transmission
Diarrhoea
Integrated management of childhood illnesses
Tuberculosis
Directly observed short- course therapy
Tobacco
Legislation against smoking
Malaria
Insecticide treated materials
Hypertension
Vaso- dilators and diuretics
HIV/ AIDS
Highly active anti- retroviral therapy (HAART)
These were presented to the discussants. But first, we discussed the conditions and
interventions to ensure the same understanding. After which, participants were asked to rank
the conditions in order of priority given a situation of limited resources (Rank 1). After this,
they were presented with evidence on the typical populations affected (Rank 2), the
prevalence and incidence of the condition (Rank 3) and the cost- effectiveness of the
interventions (Rank 4). This was done in a stepwise manner and after presentation of each
piece of evidence, the discussants were required to rank the conditions.
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Results II:
Table 4: Median Ranking of the different conditions by all the 10 groups before (Rank 1) and with the
provision of evidence on the people affected, prevalence and cost-effectiveness of interventions.
Condition
Rank 1
(no
evidence)
Rank 2 Rank 3
(Equity) (Magnitude/
severity)
Rank 4
Rank 5
(Cost(All
effectiveevidence)
ness)
Pneumonia
6
4
4
1
4
Depression
8
8
7
8
7
PMTCT
4
5
8
6
5
Diarrhoea
3
3
2
1
3
Tuberculosis 5
6
9
4
6
Tobacco
9
9
3
5
9
Malaria
1
1
1
1
1
Hypertension 7
7
5
7
8
HIV/AIDS
1
1
6
1
1
A similar pattern is observed in the 3 selected groups. Table 5 shows their initial and final
ranking.
Table 5. Ranking of the different conditions by the 3 selected groups before (Rank 1) and after (Rank 5)
the provision of evidence.
Condition
Pneumonia
Depression
MTC
Diarrhoea
Tuberculosis
Tobacco
Malaria
Hypertension
HIV/AIDS
Women
Rank 1
6
9
2
4
5
7
3
8
1
Rank 5
3
9
4
2
7
8
1
6
5
Planners
Rank 1 Rank 5
4
3
7
6
3
4
2
2
6
5
9
7
1
1
8
9
4
8
PWAs
Rank 1
7
4
6
3
5
9
2
8
1
Rank 5
4
7
6
3
8
9
2
5
1
Key: Rank 1= Without evidence; Rank 5= With all the evidence
The overall ranking of PMTC was average (5) as compared to the other 8 conditions.
Childhood diseases and HIV/AIDS were ranked higher. Reasons for the given ranks were
discussed. The women’s group ranked it high (initially), their reasons being that it affects the
future generation of innocent children. Some thought that since the numbers affected were not
so high, yet it was deadly, with a possibility of prevention, it should be addressed.
Much as the groups that ranked it lower also appreciated the above reasoning, they felt it was
a smaller problem and that there is need to take care of the adults to ensure that the baby
survives. Malaria was ranked high consistently because it was common and can kill quickly.
There was a big change in the ranking when evidence on the magnitude of the problem was
introduced (Rank 3). This is illustrated for the 3 selected groups specifically for PMTCT
ranking. (Chart 2)
Conversely, HIV was ranked consistently high with the reasons that it has killed many people.
The PLWAs consistently ranked HIV first contrary to the other groups. Their reasons were
that it is a very serious problem for which there was no cure and the treatment was just
unaffordable for the average Ugandan citizen.
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Concluding Remarks
Given the:

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
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
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

Social economic status of most Ugandans and especially the women,
Morbidity patterns,
Resources available (Financial and Infra- structure),
HIV downward trend,
Population most affected (already vulnerable women and children),
Cost- effectiveness of the intervention,
Consequences of the intervention (for the mother, child and society),
Breast- feeding and child survival dilemmas
Competing demands for the meagre resources and hence opportunity costs,
Public’s voice (ranking and their criteria),
Criteria for priority setting;
should PMTC still be a priority in Uganda?
References
Marseille E, Kahn G, Mmiro F, Guay L, Musoke P, Fowler G, Jackson B, (1999) Cost effectiveness of single
dose nevirapine regimen for mothers and babies in sub- saharan Africa, The Lancet, Volume 354, Number 9181.
Ministry of Health, Uganda (1999), Health policy statement.
Ministry of Health, Uganda (2000), Health policy statement.
Norheim FO (1996), Limiting access to health care a contractualist approach to fair rationing. Thesis presented
to the institute of medical ethics, university of Oslo, in partial fulfilment of the requirements for the degree of
doctor of medicine.
Uganda Demographic and Health survey (2001) Preliminary report, Uganda Bureau of statistics.
UNAIDS/ WHO (2000) Epidemiological fact sheets on HIV/AIDS and sexually transmitted infections, Uganda.
Williams A, (1988). Priority setting in public and private health care. A guide through the ideological jungle.
Journal of health economics, 1988 Jun, 7(2):173-183.
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Experiences from counselling in a
PMTCT project in Botswana
Ludo K. Nkhwalume
Registered Nurse-Midwife. BSN
Masters student in International Community Health
University of Oslo.
Introduction
The purpose of this article is to create awareness on the impact of the HIV/AIDS epidemic on
children of Botswana. It also addresses counseling challenges in prevention of mother to
child transmission of HIV.
Overview of the PMTCT project
Botswana located in southern Africa is one of the countries in the sub-Saharan region hard hit
by the HIV/AIDS epidemic. 38.8% of the women attending antenatal services are HIV
infected (HIV/AIDS sero-prevalence and STD survey 2000). Because of the HIV epidemic,
infant mortality has dramatically increased over the years. In 1998, 34% of pediatric
admissions and 70% of pediatric deaths at Nyangagwe Hospital in Francistown were HIV
related (hospital statistics, 1998). Almost all of these cases got infected through vertical
transmission, which could occur during pregnancy (5-10 %), during childbirth (10-20 %) and
through breast feeding (10-15 %). Projections on infant mortality indicated that the situation
could be worse if no interventions were put in place.1
The program to prevent mother to child transmission (PMTCT) of HIV in Botswana was
initiated in 1999. The pilot sites were the two main cities Gaborone and Francistown. To date
the program has scaled out to 8 out of 23 health districts. The program components include:

Access to voluntary counseling and testing for all pregnant women at antenatal clinics.

Short course Zidovudine to HIV infected pregnant women and their babies.

Infant formula as the recommended feeding choice for babies of all infected mothers,
provided free by the government.
The other major component was training of health personnel as counselors before the program
was implemented and this is where I was mainly involved.
Personal role



Training of counselors
Counseling
Follow up of counselors (counseling supervision)
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Training of counselors
The target group of trainees initially was midwives and doctors who worked in MCH/FP
facilities and Maternity units, laboratory technicians, pharmacy technicians and social
workers. Initial selection was based on unit supervisor’s confidence on the individual basing
on professional and personal behavior and on individual interests. Eventually, almost all
nurses were trained even the non-midwives so that they could provide patient care which
doesn’t require midwifery expertise.
Training sessions were in groups of 15-20 participants for a period of 2 weeks. The first week
focused on theory and the second week was for both theory and practical. Some of the
content covered included:




Effective communication, including self-awareness.
The counseling process: - helping the client tell her story, helping the client consider
options and helping the client make a plan.
Considerations of ethico-legal issues (moral principles and legal considerations).
Reaction of trainees to the course
Most of the health workers were happy about the training even though the major concern was
increase of the workload. Some felt it was good since now the government has focused on
children who are the future of the country. Others were happy that they were to gain a new
skill that would be more helpful in providing patient care even in helping their own relatives
who may have social problems. Others felt the program was useless since it focused only on
babies and had little to do with the health of the mother (this was due to fear and lack of
understanding since the program had just started).
Counselling challenges and experiences
These are seen from the point of training counselors and from actual counseling of clients.
Health workers-related
1. Training all health workers involved in provision of health care to pregnant
women and their children regardless of their (trainees) personalities or
attitudes towards patients in general or the program and even their
interests:
Counseling requires people with warm caring personalities, motivated, resilient and who
respect others for who they are. Some of the health workers have a negative attitude towards
the program, and above all lack qualities of an effective counselor. This makes one wonder
how they would handle those who are HIV infected.
2. Training health workers who are already over burdened with their regular
work to carry out such a demanding, stressful yet very important task:
Shortage of health workers is a major problem in Botswana and to fit counseling activities
into their overburdened worklife was a serious problem. It meant a lot of sacrifices from both
the health workers and the clients in terms of time and it required commitment on the part of
the health worker.
3. Counselor’s lack of self awareness
Counselors have to understand themselves, their own beliefs, values and assumptions so that
they do not impose them on clients. If counselors do not understand themselves, they are
unlikely to control their thoughts and behavior. For example, a counselor may end up advising
a client not to opt for testing since she “the counselor“ finds it difficult to live a normal life
knowing she is HIV infected.
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4. Counselor Burnout
Health workers (counselors) become frustrated and stressed because of work overload.
Counseling adds onto their stress as they observe and experience the pain of those who are
HIV infected as they break the news to them. Because of this, counselors need ongoing
counseling, supervision and support so as to allay the burnout.
Client-Related
1. Breaking the news to an HIV infected client
Most of the clients opt for voluntary counseling and testing because they believe they are not
infected. Some of these clients would appear healthy. These clients even after pre-test
counseling have high hopes of being HIV negative. Telling these clients that they are HIV
infected paralysis them emotionally. This also affects the counselor emotionally even though
she has to know how to handle the situation.
2. Male partners’ reluctance to turn up for counseling with their spouses
Male partners rarely come for counseling with their spouses. Some would even forbid their
partners to test. Some women would just test and if the result is positive, it becomes difficult
to live positively since they wouldn’t want to disclose to their partners.
3. Dilemma regarding feeding options
Some of the HIV infected mothers opt for artificial formula and some of them may not be able
to prepare the formula and care for the equipment properly even after demonstrations. This is
a challenge since formula feeding predisposes the child to diarrheal diseases especially in
developing countries.
HIV infected babies need breast milk more for protection (by maternal antibodies) than those
who are not infected. The country’s protocol and policy regarding breast feeding options has
to be followed
4. Stigmatization associated with formula feeding
Mothers who opt for artificial formula feeding get the formula from the nearest health facility
until the child is 6 months old. This situation interferes with confidentiality since almost
everybody in the country is aware that those who get formula from the health facility are HIV
infected. Mothers are free to decide on how best they can collect the formula from the
facility.
Conclusion
Counseling and testing is one of the most important strategies in fighting the HIV epidemic.
It has to be valued by individual communities and especially the policy makers and
governments for its’ success. It is important that those who go into counseling have certain
specific qualities so that they are able to meet and overcome the challenges of counseling.
References
UNICEF and WHO (Botswana) position page July 2001. HIV infection and infant feeding in Botswana.
Benefits and risks of alternate feeding options.
An overview of the HIV/AIDS response and challenges in Botswana: June 2001. Botswana technical working
group on UN special session on HIV/AIDS.
Botswana 2000 HIV sero-prevalence and STD Syndrome Sentinel survey report, National AIDS Coordinating
Agency.
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Appendix
Save the children of Africa from HIV……………………………………………………….
46
Conference report: »Global Strategies for Prevention of HIV Transmission from Mothers to Infants»
By Professor Svein Gunnar Gundersen
Universty of Oslo, Norway
Dilemmaer for mødre i aids’ tidsalder……………………………………………………..
50
Av Rachel Myr
Først publisert i Tidsskrift for jordmødre, nr. 12/2001
Mødre smitter sine barn………………………………………………………………………..
52
Av Liv Røhnebæk Bjergene
(Først publisert i Bistandsaktuelt, nr. 10/2001)
Seminar program…………………………………………………………………………………
54
Participants……………………………………………………………………………………...…
55
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Save the children of Africa from HIV
Report from the Third Conference on
»Global Strategies for Prevention of
HIV Transmission from Mothers to Infants»
September 9-13, 2001, Kampala, Uganda
Svein Gunnar Gundersen
Professor of International Health,
Universty of Oslo
This was the third conference with the focus on »Prevention of mother to child transmission»
(PMTCT) of HIV, bringing together researchers, program co-ordinators and workers in this
field. The meeting was a good combination of plenary and workshop sessions, and gave many
possibilities for interaction between the participants. The 700 participants came mostly from
African countries (plus Thailand and Brazil) together with USA, and representatives from
WHO and UNICEF. Unfortunately the European participation was comparatively limited. In a
panel of donor organisations, only the American organisations were represented, in addition
to WHO and UNICEF. Another limitation was the rather lack of details in the presentation of
the present knowledge and the last research results in the field. This was obviously a congress
not only for researchers, but also for anyone interested.
An estimated 700,000 new-born was infected with HIV in the year 2000 (about 2000 per day),
of which 90 % happens in developing countries, mostly in Africa. Research data indicate that
nearly 1/3 of these are infected during pregnancy, 1/3 during delivery and 1/3 through
breastfeeding. Before 1994, 25-43 % transmission was reported in developing countries and
only 12-25 % in industrialised countries. In 1994, it was shown that ZVD (AZT) given during
the last month of pregnancy and during the first weeks of the new-born infant’s life, could
reduce the transmission by 67%. This has now developed into new regimens of Highly Active
Anti-Retroviral (HAART) multidrug treatment in the industrialised world, where MTCT is
now down to less than 2 %. This depends on delivery by caesarean section and the infant
formula feeding. Most of which are far beyond the reach of most poor countries. Only the
ZVD needed for this treatment costs US $ 1000.
The first «Global Strategies» conference in 1997 in Washington DC was organised to call for
world-wide attention of these facts. And not long after came the results of the studies from
Thailand which showed that shorter, and cheaper courses of ZVD were almost as effective as
the standard course. The second meeting in Montreal in 1999 coincided with the publication
of the Ugandan HIVNET 012 study. This showed that one single tablet of 200 mg nevirapine
given to the mother during labour and one dose of syrup given to the infant during the first 72
hours of life reduced the HIV-transmission with 47 %. The medicines cost only 1-4 US $, and
is the first really cost-effective approach feasible in poor countries. A call for widespread use
of nevirapine was then propagated.
It was against this background that the present conference was held. A number of questions
were still felt unanswered. What about breastfeeding versus formula feeding, antiviral drugs
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during breastfeeding, treatment of the mother, mass prophylactics, voluntary counselling and
testing, the role of the father, and how to scale up into nation-wide programmes?
Breastfeeding vs. other alternatives
Already for some years the previous strong message of the importance of breastfeeding for
infant health and survival has been confused by the knowledge that this might transmit HIV.
In many situations it is almost like a choice between «pest and cholera»: Breastfeed and your
child will die of AIDS, or give alternative feeding and your child will die of diarrhoea or
malnutrition. And since science has no clear answer, the mothers are now left with
counselling telling them the options and leaving them to make the choice themselves. I spoke
with several African workers from such projects who were deeply concerned about the
confusing message spread. In the end the mothers presently choose according to experiences
from previous pregnancies, being it one or the other, and not according to medical advice. All
depending on resources: «How can I offer my baby formula feeding when I do not have food
for myself». Alternative is often cows milk, sometimes mixed with so much water that the
child gets malnourished, with unclean utensils or water, which gives diarrhoea.
A meta-analysis of existing studies indicates that there is 14-15% of transmission risk during
2 years of breastfeeding. During the first 6 month, which are the most essential to breastfeed,
5% of the transmission occurs. Only 8-10% occurs the next 18 months. And the update from
the 18 months follow-up of HIVNET 012 indicates that transmission follows the same pattern
also after drugs are given only during delivery.
However, most of these studies are done in societies of mixed feeding. This is the typical
solution in most of modern African where the mother must be away from home for work in
the middle of the day. But according to new studies probably the most dangerous solution,
since the intestine is made more receptive for HIV by the reactions to other food given.
Additional risk factors are mother’s HIV-status (early or late stage), cracked nipples, mastitis,
and thrush in child’s mouth and HIV-infection of mother during lactation. A study from
Durban, South Africa, however, indicates that exclusive breastfeeding during the first crucial
6 months of life, might not be as dangerous as mixed feeding. After a major marketing
campaign, local women were convinced to try out this option of feeding.
Antiretroviral drugs during breastfeeding
One of the most exciting studies going on presently is the continuation of the Durban study
(HIVNET 023) with exclusive breastfeeding. At the same time giving the infant different
doses of nevirapine to prevent transmission for the first 6 months of life. And then weaning.
The first data clearly indicated that the proposed HIV-preventive concentration of the drug
(100 microgram/ml blood) could be achieved in 96 % of the cases by 2-4 mg/kg nevirapine
daily or 4-8 mg/kg twice weekly. However, once weekly doses of 4-6 mg/kg gave too low
concentration in more than half the cases. In any case we have to wait for at least 6 month to
know the preventive effects of these interventions, although there seemed to be a rather large
consensus that this was probably the way to go for the future, if found effective. Doses are
small and cost limited for this option.
What about the mother?
The congress started with a play by a local group called TASO, showing the real life
experience of HIV-positive pregnant mothers. After having been tested and given nevirapine
and received a healthy baby, the woman cries out «But what about me». Most African
countries are far from having the possibility for giving the mother HAART or any other antiCentre for Health and Social Development
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retroviral treatment, even in order to save the child. The Ugandan co-chairman or the
congress, Professor Mmiro, expressed the concern in his closing speech: «We can not save the
children of Africa if the mother dies of AIDS». This was a major concern during the whole
congress. Even research directed at finding the simples drug combination for the mother to
protect the child, will not be accepted according to the last version of the Helsinki declaration.
It is regarded as unethical to research on drug combinations that are not available to the
population under study after the research is ended. The consent in the meeting was, however,
that the present strong activities for prevention of mother to child transmission must be
followed by treatment of the mothers to sustain the child survival. A recent initiative of
Rockefeller Foundation together with a number of donor countries and UN is said to be
announced very soon, for the funding of treatment of HIV positive mothers.
Voluntary Counselling and Testing (VCT) versus mass
prophylactics
Mass prophylactics were presented by an economist at the meeting as the only cost-effective
method of PMTCT. This approach of giving nevirapine to all delivering women without
previous HIV-testing was, however, not widely accepted by the audience. People felt that the
present status of lack of knowledge of ones HIV-status was kept up in this way. Mothers
would not be able to make choices to prevent transmission during breastfeeding and would
not be able to try to take any consequence of their HIV status, being it preventive or curative.
Prophylactics could, however, be offered without testing to those who after counselling still
refused to be tested.
All programs dealing with PMTCT have a major component of counselling and testing. The
logistics of this, however, are enormous. The budget to establish this in a program is more
than 90% of all costs, and the drug less than 10%. All active in the field advocate that the
counselling, testing and drug delivery is integrated in the ordinary antenatal care (ANC) and
mother and child health (MCH) delivery. We heard many complaints of how impossible this
was felt in the already over-stretched health services in the poor world. That much more
personnel had to be trained, better facilities built, better supplies organised etc. etc. And
people were concerned about confidentiality, lack of support etc. Still, there seemed to be a
strong case for integration and normalisation. Studies from different countries and services
have come to very different results regarding the acceptability of pregnant women regarding
HIV-testing and whether they come back for their results. Rapid tests increase the proportion
that gets their results. And still not all take the opportunity to get the drug. There might be a
lack of compliance because of poor service in the clinics, lack of confidence etc.
The role of the father and the family?
Many women are afraid to disclose their HIV-status for their partner and the rest of the
family. A number of voices made a strong case for the participation of the father. Let this be
an entry into HIV-services for the whole family. Let MCH become Family Health. India
seems to have good experiences with this. Some of the participants indicated that the MCH
facilities at present are very men-unfriendly, and that only women and children are welcomed
there. Still several programs have been successful in VCT for couples. The delivery of
discordant results (one HIV-positive, the other HIV negative) is obviously a big challenge.
However, in most cases when the mother is positive, the partner has infected her. Even though
some indicated that the men were too busy in their offices to come for testing (needs more
flexible opening hours of services), most were in favour that one should try to approach the
whole family. The future gradual availability of anti-retroviral drugs would create a new hope
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for HIV-infected all over the world, which can be utilised as an entry point for counselling
related to prevention and minimal packages of care.
Scaling up
In many countries there has been a lack of political will to scale up the PMTCT activities. We
heard many examples of this. How political priorities were given to sports arenas and
prestigious building rather than nation-wide HIV-activities. How Clinton’s tour to Nigeria
was 2-3 times more expensive itself, than the 10 million US$ offered to Nigeria for HIVwork. The American co-chairman of the congress, Professor Arthur Amman, pointed out that
the cost would be only 2.8 million US$ to treat all the worlds mother and children daily. He
made a demagogic demonstration at the end of the congress by presenting a briefcase with
2000 doses of nevirapine, asking people in the meeting who could use these in the coming
year to come and receive it, in order to prevent 1000 lives. The enthusiasm this created was
for many of us overshadowed by the very fact that in the real life things are not so simple.
Even though the drugs have given a new hope for people living with HIV, there are a number
of other issues who also must be addressed to create sustainability.
Special Recognition Awards to Four Countries
The congress gave awards to four countries for their outstanding work against HIV/AIDS.
Botswana has scaled up a basic programme for the whole country not only for PMTCT but
now also in order to make antiretroviral drugs available for all people infected. Brazil has
integrated VCT and AZT in antenatal care and now also made a combination of drugs
available for all infected. Thailand has made available the short AZT course to all pregnant
women from 1996, so that in 2001 85% of 578,158 pregnant women received VCT and the
majority of the HIV-positive received AZT. Uganda was the first of African nations to
acknowledge the severity of the HIV-epidemic. Under the leadership of President Museveni,
Uganda has managed to reduce the HIV prevalence from 18.5% in 1995 to about 6% in 2000.
This has been achieved by a combination of all thinkable and unthinkable preventive
marketing activities. Moreover, Uganda has been involved in groundbreaking ethical clinical
research.
Norwegian-Based Activities
This congress did not focus on research, but rather on creation of consensus related to
programme implementation. In many fields, however, it was obvious that the knowledge of
available options were not clear. Some voices favoured large scale implementation with the
means available, and spoke against large new prospective comparative trials. Others realised
that there are limited research done and several questions unanswered. Most delegates seem to
agree that there was far too little monitoring of the effects from ongoing large PMTCT
programs. There was therefore a strong case for operational research linked up to ongoing
activities especially in Africa. The planned research projects from the international health
departments of the universities of Oslo and Bergen were appreciated by those delegates active
in ongoing research, with whom we had good discussions and got helpful advice from. If
financed by NUFU or other donors, central researchers in ongoing research would be willing
to offer external advice. Moreover, activities in this field propagated by NORAD and
Norwegian NGOs could preferably gain from the knowledge base of Norwegian researcher
active in the forefront of how to prevent mother to child transmission of HIV.
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Dilemmaer for mødre i aids’
tidsalder
Forebygging av mor til barn overføring av HIV
Av Rachel Myr
(Først publisert i Tidsskrift for jordmødre, nr. 12/2001)
Senter for helse og sosial utvikling (HeSo), NORAD og Universitetet i Oslo inviterte til
en gratis dagskonferanse om mor til barn overføring av hiv den 19.10.01. Foreleserne
kom fra inn- og utland og representerte noe av den fremste ekspertisen om emnet i dag.
Blant disse var barnelege Connie Osborne fra Zambia, fra FNs arbeidsgruppe om aids. Hun
presenterte arbeidsgruppens visjon for den nærmeste framtid: en 20% reduksjon i antall barn
smittet av mødre innen 2005, og en 50% reduksjon innen 2010. Dette håper de å oppnå
gjennom å sikre at minst 80% av gravide har tilgang til informasjon, rådgivning,
svangerskapskontroll, medikamentell behandling og eventuelt kunstig ernæring, hvor dette er
riktig å bruke.
Aids rammer hardest i de landene som fra før har meget høy barnedødelighet, som Malawi
med 14% dødelighet for barn under fem år før man regner med aidsrelaterte dødsfall, og i
noen av landene står aids for halvparten av all dødelighet. Når man vet at andel barn som
smittes under graviditet eller i forbindelse med fødsel er i dag mindre enn 2% i industrialiserte
land med tilgang til testing og behandling, og hele 25 til 43% i ressursfattige land, så kan man
spørre hvorfor FN har så nøkterne mål? Behandlingen finnes jo, testingen likedan. Men for å
kunne tilby testing og behandling kreves et helsevesen som fungerer på et helt annet nivå enn
det gjør i de hardest rammede land. Å gjøre noe med aids vil gi uttelling i dobbel forstand,
fordi ressurser som nå trengs til behandling av aidssyke vil kunne brukes til andre oppgaver
som nå forsømmes.
Og selv om man kommer fram til en behandlingspakke som ikke koster tusenvis av kroner pr.
pasient, så er antallet som trenger behandling så overveldende at vi knapt kan forestille oss
det. Infeksjonsspesialist Svein Gunnar Gundersen gikk gjennom aids-epidemiens historie,
med vekt på hvordan mødre og barn er berørt av den. Han kalte den den mest skremmende
epidemien menneskeheten har stått overfor noen gang. Det er nå 30 millioner aids-dødsfall
årlig, det er 36,1 millioner mennesker som lever med hiv, og rundt 5 millioner smittes hvert
år. Det er 1,4 millioner barn som lever med hiv, hvorav 1,1 i Afrika. Man regner med at 2/3
smittes i graviditet og under fødsel, og 1/3 gjennom amming. Elektiv sectio før vannavgang
reduserer smitterisiko ved fødsel, men det er medikamentell behandling av mor som har mest
å si.
Spørsmålet om amming for hiv-positive mødre er på ingen måte lett å svare på. Den delen av
konferansen vil bli viet mer plass i et senere nummer, her vil vi presentere dilemmaet fra en
mors perspektiv.
Én kvinnes historie: en historie om mange kvinner
Mary Okoth bor i London og er med i organisasjonen Positively Women, for hiv-positive
kvinner. PW baserer det meste av sitt arbeid på ’peer support’, kvinner støtter hverandre for å
kunne leve til fulle og lengre. Syttifem prosent av medlemmene er afrikanske kvinner. Hun
var lærer i Uganda og flyttet til London på 1980-tallet. Begge hennes barn ble født etter hun
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fikk vite at hun var hiv-positiv. Hun ble testet i 1991 nesten ved en tilfeldighet og uten noe
rådgivning på forhånd. Det ble anbefalt av et helsesenter hun oppsøkte med genital herpes
recidiv, fordi hun var fra Uganda og hadde hatt seksuelt overførbar sykdom. Da hun kom
hjem fra legesenteret begynte det å gå opp for henne hva hun hadde gjort, og hun ringte en
kusine som bodde i byen. –Du er gal! sa kusinen. –Når du får svaret, hvis det er positiv, vil
jeg aldri høre ett ord om det! Mary torde knapt å gå tilbake og få svaret, og måtte purres på
flere ganger. Hun ante uråd, men så lenge hun ikke visste noe kunne hun greie livet sitt. Da
hun fikk beskjed om at hun var hiv-positiv var det et sjokk. Men det intensiverte hennes
ønske om å få barn. –I min kultur er det å føde barn noe som verdsettes høyt, og moderskap
har en meget spesiell plass i samfunnet. Jeg hadde utsatt å stifte familie til jeg var ferdig med
min utdanning. Men jeg ble gravid ikke lenge etter diagnosen, og det var en av de viktigste
dagene i mitt liv, forteller Mary. Hun ba til Gud om at barnet måtte være friskt, og syntes det
var godt å kunne lene seg til troen da. Hun roser både jordmor og gynekologen som fulgte
henne opp i svangerskapet, begge var spesialister på å arbeide med hiv-positive kvinner. Hun
fikk informasjon slik at hun kunne ta valg selv. Det første barnet, en jente, hennes ble født
vaginalt, og det var før medikamentell behandling ble tilbudt. Sønnen hennes ble født mens
medikamentbehandling var i startfasen, men hun greide ikke å ta medisinen fordi hun fryktet
bivirkninger for barnet. Hun fødte ved elektiv sectio andre gangen og ammet ikke. Begge
hennes barn er friske og hiv-negative, og hun har en mann som tar sitt ansvar som far og
støtter henne fullt ut. I dag tar hun høyaktiv antivirusmedikamenter og sier hun har dem å
takke for at hun er her for å ta seg av barna.
Det var sårt for Mary å ikke amme, men hun visste at det kunne være en smitterisiko og valgte
å gi flaske. Kusinen som ikke ville vite svaret hadde omsider fått vite det. Hun fikk et barn
nesten samtidig, og tilbød Mary overskuddsmelk da hun hadde i rik monn til sitt eget barn.
Mary satt pris på det, hun visste jo hvor verdifull morsmelk er for et barn. Det ble likevel
ikke til at hun tok imot, de bodde langt nok fra hverandre at det var upraktisk å komme til og
fra. Så fikk kusinen et akutt utbrudd av helvetesild, og den ene infeksjonen utløste den andre.
Tiden gikk, og kusinen fikk vite at hun ikke bare var hiv-positiv, men hun hadde utviklet aids.
–Jeg klarer ikke å fri meg fra tanken, om at hvis jeg hadde fått skikkelig rådgivning i
forbindelse med min egen hiv-test, så hadde jeg kanskje greid å snakke med min kusine den
gangen, og kanskje hun hadde levd i dag, og kanskje hennes to barn hadde sluppet å bli
smittet, sier Mary, og føyer til at minnebøker om spedbarnstiden vokser nå i popularitet i flere
afrikanske land. Ikke for at mor skal huske fra barna var små, men for at barna skal kunne
vite at noe om sin mor, selv om hun ikke lever når de vokser til.
Positiv i mer enn en forstand
Hun arbeider nå som rådgiver for hiv-positive. Støtte fra andre hiv-positive mener hun er
klart den sterkeste hjelpen man kan få. Salen satt musestille mens Mary berettet, og gikk
gjennom punktene som kommer opp når en kvinne skal ta stilling til en hiv-test, og etterpå
hvis denne er positiv. Hun fikk også, ikke ufortjent, den varmeste applausen hele dagen. Hun
er en overbevisende representant for hvordan Positively Women fungerer og et flott eksempel
av en ’empowered woman’. Og det kan trengs. De fleste kvinner velger å holde sin status for
seg selv, fordi sykdommen ikke oppleves like truende som omgivelsenes reaksjon. Det er
vanlig at kvinner blir utsatt for vold, utstøtt av mann og familie, og beskyldt for å ha brakt
skammen over slekten – selv om mannen godt kan være den som har smittet henne. Derfor
ønsker organisasjonen å rette sin innsats mot dem som trenger det mest, og hvor det vil monne
best. For som lederen av et internasjonalt aidsmøte i Kampala i september sa, vi kan ikke
redde barna (i Afrika), hvis deres mødre dør av aids.
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Mødre smitter sine barn
Av Liv Røhnebæk Bjergene
(Først publisert i Bistandsaktuelt, nr. 10/2001)
Årlig føder to millioner hivpositive kvinner barn. I den industrialiserte del av verden
har medisinering gjort at under to prosent av barna blir smittet av moren. I
utviklingsland overføres imidlertid fortsatt sykdommen til mellom 25 og 43 prosent av
barna.
Nå forskes det intenst for å finne kostnadseffektiv medisinering som kan redusere
smitteoverføringen også i utviklingsland. Forskere har beregnet at om lag en tredel av
smitteoverføringen av aidsviruset mellom mor og barn skjer under graviditeten, en tredel
under fødselen og en tredel ved amming.
– I 1994 begynte man i den industrialiserte delen av verdenen med medisinen ZVD, noe som
reduserte smitteoverføringen fra mor til barn fra 12-25 prosent og ned til under to prosent, sier
professor ved Universitetet i Oslo, Svein Gunnar Gundersen under et seminar med tittelen
«Dilemmas Facing Mothers in the Time of AIDS».
I 1994 viste et forskningsprosjekt i Frankrike at ved å ta ZVD under graviditeten og ved
fødselen, reduserte man smitterisikoen med 68 prosent. Prisen var imidlertid høy, hele 1000
dollar.
Redusert smitte og lav pris
– Det første virkelige kostnadseffektive forskningsprosjektet fant imidlertid sted i Uganda i
1999 med medisinen Nevirapine. Moren ble gitt en dose ved fødselen, barnet en dose da de
ble sendt hjem fra sykehuset og moren ammet barnet. Dette førte til 47 prosent reduksjon i
smittefaren. Behandlingen koster mellom en og fire US dollar, sier Svein Gunnar Gundersen,
som gjør oppmerksom på at man ikke vet langtidseffekten av denne behandlingen.
– Man målte smittenivået etter 14-16 uker med amming. Vi vet derfor ikke om mange blir
smittet ved et senere tidspunkt, sier Gundersen.
Bortkastede ammekampanjer
Risikerer jeg å smitte barnet mitt med aidsviruset dersom jeg velger å amme det? Det er det
vanskelige valget hivpositive kvinner står overfor.
– I utviklingsland har de som oftest ikke noe valg. For det første er melkepulveret som regel
for dyrt og vanskelig å få tak i. Dessuten er det sosiale presset om å amme barnet ofte stort.
Mange frykter at dersom de ikke ammer, blir deres status som hivpositiv oppdaget, sier Marge
Berer, redaktør i bladet «Reproductive Health Matters» og WHO-medlem.
– Det er viktig av vi fokuserer på å gjøre det trygt å amme de første seks månedene, sier Svein
Gunnar Gundersen og forteller at fem prosent av barna blir smittet ved amming de første seks
månedene, mens ved amming i to år er smitteprosenten 15.
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Han forteller at mye tyder på at smittefaren øker dersom man både ammer og bruker
erstatningsføde fordi dette kan skade barnets nyrer og gjøre de mer mottakelige for å bringe
smitten inn i barnets blodomløp.
– Studier fra Sør-Afrika viser redusert smitte dersom barnet kun får morsmelk de første seks
månedene, noe som er svært lovende. Dessverre viser andre studier det motsatte. Valget blir
derfor opptil hver enkelt mor, men det er viktig at de får informasjon både om positive og
negative effekter av å amme. Det vi dessverre opplever nå er at 20-30 års kampanje for
amming er bortkastet, sier Svein Gunnar Gundersen.
For få kondomer
Ferske tall fra UNAIDS viser at om lag 40 millioner mennesker i verden lever med hiv/aids,
hvorav 17,6 millioner er kvinner. Antall nysmittede barn (under 15 år) i 2001 anslås til
800.000 jenter og gutter. Så langt har over 21 millioner mennesker dødd av sykdommen.
Marge Berer forteller hvordan problemene knyttet til hiv/aids og mor-barn smitte første og
fremst er en utfordring for landene sør for Sahara, ettersom 88 prosent av barna som blir
smittet bor der.
– Halvparten av alle som ble smittet i 1998 var mellom 15 og 24 år. Det vil si at mange jenter
smittet før de gifter seg, ofte trolig av menn som er eldre enn de. For å få bukt med problemet
må vi derfor få menn til å forstå konsekvensene av å ha flere seksualpartnere, sier Berer.
Hun forteller at i Afrika sør for Sahara har befolkningen tilgang til om lag 724 millioner
kondomer.
– Fordeler vi disse på antall menn mellom 15 og 59 år, så har de hver tilgjengelig 4,6
kondomer årlig. I så fall kan de praktisere sikker sex kun en gang hver tiende uke, sier Berer.
Bare halvparten tester
Connie M. Osborne i UNAIDS sier FN nå har vedtatt en handlingsplan som innebærer at
hvert land innen utgangen av året skal ha planlagt hvordan man kan hindre mor-barn smitte.
Innen utgangen av 2002 skal landene ha bygd opp lokal kapasitet til å takle problemet i minst
ett distrikt, og innen 2005 skal det være slik kapasitet i alle distrikter.
– Dersom ikke noe gjøres vil vi i land som Botswana, Zimbabwe og Kenya oppleve en
dobling av antall smittede barn under fem år innen 2010. Et land som Botswana, som er et
pilotland, sier de vil forsøke å bygge opp lokal kapasitet i alle distrikter allerede innen årsslutt.
Men til tross for sterk politisk vilje, er det bare 45-50 prosent av kvinnene som vil la seg teste,
forteller Osborne.
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Seminar report
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Seminar program
Monday, November 19, 2001
Håndverkeren kurs- og konferansesenter
Oslo, Norway
09.00 Opening
David Hansen, political advisor to the Norwegian Minister of International
Development
09.15 What is PMTCT all about?
Professor Svein Gunnar Gundersen, University of Oslo
09.45: Scaling up interventions to prevent MTCT
Dr Connie M Osborne (UNAIDS) presents the vision of the UN Interagency Task
Team
10.30 Coffee break
10.45 The dilemmas facing women in the time of PMTCT
Marge Berer is the Editor of Reproductive Health Matters and serves as Chairwoman
for the Gender Advisory Panel in the Dept of Reproductive Health, WHO
11.45 Lunch
12.45 PMTCT – a mother’s perspective
Mary Okoth from Uganda is a freelance trainer and consultant in the UK. She has
worked as a community development officer, and is an expert on African women’s
issues. She is HIV positive and the mother of two children
FIELD RESEARCH EXPERIENCES:
13.30 Breastfeeding and the dilemma posed by AIDS in Tanzania
Marina de Paoli and Sia Msuya are PhD-Candidates at the University of Oslo. Both
have clinical and research experience from the Kilimajaro region of Tanzania.
14.00 Should PMTCT be a priority in Uganda?
Lydia Kapiriri is a medical doctor specialised in public health, working on a Ph.D on
priority setting in Uganda, at the University of Bergen
14.15 Counselling in PMTCT - experiences from Botswana
Ludo Nkhwalume is currently pursuing a Masters Degree in International Community
Health at the University of Oslo. She is a registered nurse midwife with experience
from the PMTCT project in Botswana.
14.30 Coffee break
14.45 Panel discussion
- Svein Gunnar Gundersen
- Marge Berer
- Mary Okoth
- Elisabet Helsing
- Kjersti Gjestvang, UNICEF
- Birgit Lunden, Norwegian Ministry of Foreign Affairs
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Seminar report
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Participants
Name
Organization
Abdallah Abudayya
Ahmed Ali Ahmed
Anita da Cruz
Anne Kristine Gilje
Anne Skjelmerud
Berit Austveg
Birgit Lunden
Bjarne Robberstad
Brunborg Helge
Connie Osborne
Edle Fuglset Buer,
Elisabeth Helsing
Elisabeth Tufte
Erik Bøhler
Erling Tjora
Gloria Adobea Odei
Gro Haugland
Gunnar Bhune
Guri Fløttum
Hilde Masvie
Hilde Nygård Jennifer Baluka
Johanne Moen
Johanne Sundby
John Arne Røttingen
Karen Marie Moland
Kay Keo Akkhamountry
Kjersti Gjestvang
Kristine Storholt
Kåre Moen
Liv Bergene
Ludo Nkhwalume
Lydia Kapiriri
Mahmood Wohoosh
Mamady Cham
Marge Berer
Marianne Munclair
Marianne Thorèn Marina de Paoli
Mary Okoth
Nahid Chowdhury
Pål Jareg
Rachel Myr
Ragnhild Seip
Ravn Bodil L.
Rosa Malamwo
Shamim H Talukder
Sia Msuya
Sigrid Anna Oddsen
Svein Gunnar Gundersen
Tadesse Alemayehu
Thabit Tambwe
Thora Holter Tonje Holte
Uma Kandalaewa
Usha Srinath
Vibeke Christie
Yusman Kameleri
Zumin Shi
Mphil student IASAM
CIH
African health team
Stavanger
HESO
Helsetilsynet
UD
Centre for International Health
SSB
UNAIDS
Mphil student IASAM
Paneldeltaker
Nasjonalt ammesenter
UiO
Kristiansand
Mphil student IASAM
ForUM
IASAM
African Health Watch
Centre for Health and Social Development
Post Office Box 133 Sentrum, N-0102 Oslo, Norway
Kirkens Nødhjelp
Mphil student IASAM
Kristiansand
IASAM
Heltef
HIB
Mphil student IASAM
UNICEF
HESO
Bistandsaktuelt
IASAM
CIH
Mphil student IASAM
Mphil student IASAM
Reproductive Health Matters
Norges Røde Kors
Norges Røde Kors
UIO
London
Mphil student IASAM
HESO
Redaktør 'Jordmødre'
Folkehelsa
Røde Kors
Mphil student IASAM
UD
IASAM
Mphil student IASAM
UNICEF
Kirkens Nødhjelp
Ernæringsinstituttet:
Red Cross
UiO PhD student
IASAM
Mphil student IASAM
Mphil student IASAM
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