Page 1

missing the target

7

international treatment preparedness coalition

Treatment Monitoring & Advocacy Project

May 2009

Failing Women,

Failing Children:

HIV, Vertical

Transmission and

Women’s Health

On-the-ground research in Argentina, Cambodia,

Moldova, Morocco, Uganda, Zimbabwe

the international treatment

preparedness coalition (itpc)

is a worldwide coalition of

people living with HIV and their

supporters and advocates. Its

overall goals and strategies are

signalled in its mission statement:

Using a community-driven

approach to achieve universal

access to treatment, prevention,

and all health care services

for people living with hiV and

those at-risk. As of the end of

2008, thousands of individuals

in 125 countries were directly

affiliated with ITPC and working

to achieve these goals at the local,

regional and international levels.

the treatment monitoring

& advocacy project (tmap), a

project of ITPC, identifies barriers

to delivery of AIDS services and

holds national governments and

global institutions accountable for

improved efforts. The Missing the

Target series of reports remains

unique in the world of AIDS

and global health, offering a

comprehensive, objective, on-the-

ground analysis of issues involved

in delivery of AIDS services that

is “owned” by civil society health

consumers themselves.

all itpc treatment reports are

available online at

www.aidstreatmentaccess.org

and

www.itpcglobal.org

itpc, missing the target 7 | may 2009

table of contents

Acknowledgements

ii

Acronyms and Abbreviations

iii

Preface

iv

Executive Summary

1

Improving the Global Response

9

Country Reports

• Argentina

15

• Cambodia

24

• Moldova

35

• Morocco

45

• Uganda

56

• Zimbabwe

66

ii

itpc, missing the target 7 | may 2009

acknowledgements

research teams

argentina

General coordination and

report author: Lorena Di Giano

Interviews: Lorena Di Giano, Pablo

García, and Alcira González

cambodia

Dr. Kem Ley, freelance consultant on

HIV and health; and Umakant Singh,

Norton University

moldova

General coordination and

report author: Liudmila Untura,

Childhood for Everyone

Interviews: Igor Chilcevchii, League of

PLWHA in Moldova Republic; Igor

Moiseev, Credinta; Natali Mordari,

Childhood for Everyone; Vladlena

Semeniuc, League of PLWHA in

Moldova Republic

morocco

Othoman Mellouk, Association de Lutte

Contre le SIDA (ALCS), Marrakech;

and Nadia Rafif, CSAT regional

coordinator for MENA region

Uganda

Richard Hasunira, Coalition for Health

Promotion and Development (HEPS)-

Uganda

Aaron Muhinda, HEPS-Uganda

Rosette Mutambi, HEPS-Uganda

Beatrice Were, HIV/AIDS activist

Zimbabwe

Matilda Moyo, Pan African Treatment

Access Movement (PATAM)

Caroline Mubaira, Community Working

Group on Health (CWGH), Southern

African Treatment Access Movement

(SATAMo), and PATAM

Martha Tholanah, Network of

Zimbabwean Positive Women

(NZPW+), SATAMo, PATAM and ITPC

We are grateful to the Open

Society Insititute for its substantial

support which made possible

the production and the follow-

up advocacy for this report. We

also thank Johnson and Johnson

for supporting this report, and

Aids Fonds, HIVOS, and the UK

Department for International

Development for supporting follow-

up advocacy.

Special thanks to Stephen Lewis

and Paula Donovan of AIDS-Free

World for the preface and for

partnering with TMAP on this

report and follow-up advocacy.

And thanks to the MTT 7 Advisory

Committee and Joanne Csete

and Mitch Besser for support on

policy issues.

The Missing the Target series is

published by the International

Treatment Preparedness Coalition’s

(ITPC) Treatment Monitoring and

Advocacy Project (TMAP). ITPC and

TMAP are grateful to The Tides

Center in San Francisco (USA) for

providing fiscal management.

contact information

Project coordination:

Aditi Sharma

aditi.campaigns@gmail.com

Gregg Gonsalves

gregg.gonsalves@gmail.com

ITPC secretariat:

attapon@apnplus.org

Website:

www.itpcglobal.org

coordination

project coordinators

Maureen Baehr, Chris Collins, Gregg

Gonsalves, Aditi Sharma

editing

Jeff Hoover

research and editorial support

Erika Baehr

communications support

Attapon Ed Ngoksin

media support

Brett Davidson

Kay Marshall

gabbegroup Public Relations &

Marketing: Jill S. Gabbe, Jennifer

Robinson, Olivia Goodman, and

Caitlin Hool

design

Pamela Hayman

missing the target 7 advisory

committee

Mabel Bianco, Ellen Brazier, Padma

Buggineni, Polly Clayden, Francois

Dabis, Pascal Daha Bouyom, Paula

Donovan, Cynthia Eyakuze,

Kevin Fisher, Glenda Gray, Julia

Greenberg, Sofia Gruskin, Anu Gupta,

Lida Lhotska, Alessandra Nilo, and

Caleb Orozco

iii

itpc, missing the target 7 | may 2009

The following acronyms and

abbreviations may be found in

this report:

afass = acceptable, feasible,

affordable, sustainable, safe

anc = antenatal care

art = antiretroviral treatment

arV = antiretroviral

ccm = Country Coordinating

Mechanism (Global Fund)

cdc = US Centers for Disease

Control and Prevention

dfid = UK Department for

International Development

egpaf = Elizabeth Glaser

Paediatric AIDS Foundation

elisa = Enzyme-linked

immunosorbent assay

global fund = Global Fund

to Fight AIDS, Tuberculosis

and Malaria

idU = injecting drug user

iec = information, education

and communication

moh = Ministry of Health

mch = maternal and child health

mdgs = Millenium Development

Goals (UN)

msm = men who have sex with men

naa = National AIDS Authority

nac = National AIDS Council

nap = National AIDS Program

nchads = National Centre

for HIV/AIDS, Dermatology and

STDs (Cambodia)

ngo = non-governmental organization

nmchc = National Maternal and

Child Health Centre (Cambodia)

oi = opportunistic infection

pcr = polymerase chain reaction

pepfar = US President’s Emergency

Program for AIDS Relief

pitc = provider-initiated testing

and counselling

plwha = people living with

HIV/AIDS

plhiV = people living with HIV

pmtct = prevention of

mother-to-child transmission

pmtct+ = prevention of

mother-to-child transmission plus

pptct = prevention of

parent-to-child transmission

sop = standard operating procedure

srh = sexual and reproductive health

std = sexually transmitted disease

sti = sexually transmitted infection

tb = tuberculosis

Un = United Nations

Unaids = Joint United Nations

Programme on HIV/AIDS

Undp = United Nations

Development Programme

Unfpa = United Nations

Population Fund

Ungass = United Nations General

Assembly Special Session

Unicef = United Nations

Children’s Fund

Unifem = United Nations

Development Fund for Women

Vct = voluntary counselling

and testing

who = World Health Organization

Note on text:

All “$” figures are US dollar amounts,

unless otherwise specified.

acronyms and abbreViations

iv

itpc, missing the target 7 | may 2009

Six months ago, the researchers

and activists involved in this

report set out to understand why

the world is missing the target

on a goal it set back in 2001: to

reduce the rate of HIV infections

from mothers to babies by half.

What emerged was evidence that

the global institutions in charge

have been cooking the statistical

books. Despite the success they’ve

proclaimed, they’re nowhere near

the target. They haven’t even been

aiming for it.

On paper, the global program

called ‘Prevention of Mother-to-

Child Transmission’ is a model of

sound design and human rights

principles. Its four prongs cover

the gamut from prevention to

counselling to treatment.

In practice, the program is a

shameful example of double

standards.

We remember well the elation in

the mid-90s at our former office

in UNICEF headquarters, when

results emerged from clinical trials

in Uganda and Thailand. The risk

of vertical transmission – passage

of the virus from one generation

to the next – could be slashed,

thanks to simple, relatively low-

cost drug regimens for mothers

and infants. An 11-country pilot

project was spearheaded by UNICEF

and assisted by the World Health

Organization, and the good news/

bad news rollercoaster ride began.

The first low point came with the

pilot projects’ title: Prevention of

Mother-to-Child Transmission, or

PMTCT – a name that implies that

mothers are the source of the virus,

rather than the latest link in a long

chain of transmission.

In 2000 came good news: the

pharmaceutical company

Boehringer Ingelheim announced

that for the next five years, any

developing country could request

free supplies of its antiretroviral

drug nevirapine – a single dose

of which, administered during

labour to an HIV-positive woman

and immediately after birth to her

baby, was then believed to cut by

half the risk of transmission (now

we know that it’s actually two-

fifths). Buoyed by the possibilities,

the world’s governments made a

commitment in 2001 to reduce

infant infections by 20 percent by

2005, and 50 percent by 2010.

Suddenly, silence. For years, in

report after report issued by

UNAIDS, the global Prevention

of Mother-to-Child Transmission

program barely got an honourable

mention. By 2003, 95 percent of the

HIV-positive pregnant women in

sub-Saharan Africa, the pandemic’s

epicenter, were not receiving any

services at all to prevent vertical

transmission. UNICEF went back

and forth on infant feeding. Like

so many other programs targeting

women, everyone and no one at

the UN seemed to be in charge.

Wealthy nations were bringing

their transmission rates down to

negligible levels. Overall, for poor

women in developing countries,

coverage stalled at 9 percent as

rates of paediatric infection soared.

Scale-up was slow, uptake was low,

and no one seemed to know why.

Experts offered reasons: women

refuse testing; women don’t return

for test results; women given drugs

to self-administer don’t take them

properly. The problems, it seemed,

were caused by the women.

In the meantime, researchers were

concluding that for most of the

world’s babies born to mothers

with HIV, the best guarantee of

HIV-free survival at a year and

a half was a diet of nothing but

breastmilk for the first six months.

But most women didn’t breast-

feed exclusively. The UN’s ardour

for explaining breast-feeding to

women had diminished as the

issue became more complex: babies

needed to be fed all breastmilk,

or all breastmilk replacements

such as formula; mixing the two

could kill them. Before a mother

chose not to breast-feed, she’d first

need to assess whether for her,

replacements met five criteria:

acceptable, feasible, affordable,

safe and sustainable (AFASS).

And then the most difficult risk

to weigh: without the nutrients

and immunities in mother’s

milk, the baby could die of other

causes. Before long, in developing

countries that provided formula

and encouraged women with HIV

to avoid breast-feeding, many

babies did die.

About two years ago, we began to

notice a triumphant tone in reports

of vertical transmission from global

agencies. All heralded the fact that

coverage was finally climbing.

In 2008, cautiously optimistic,

AIDS-Free World accepted an

invitation to join TMAP in its

own assessment.

preface

v

itpc, missing the target 7 | may 2009

What we’ve learned since has been

eye-opening and deeply disturbing.

We should have seen it coming:

after all, what HIV-related program

that deals specifically with women

has not lacked funds, urgency,

coordination, and a place on the list

of global and national priorities?

Isn’t this precisely why we’ve been

advocating for the new women’s

agency the UN so desperately

needs? What we didn’t expect to

find, though, was a conspiracy of

misinformation.

“There has been substantial

progress in scaling up access to

services for the prevention of

mother-to-child transmission,”

boast WHO, UNAIDS and UNICEF

in a 2008 progress report called

Towards Universal Access.

‘Progress’ is expressed thus:

in 2007, 33 percent of pregnant

women living with HIV in

developing countries received

drugs to block transmission to

their children.

The research conducted for

Missing the Target 7 by teams in six

countries corroborates the

ugly truth: the much-touted

coverage of 33 percent consists

primarily of women who received

nevirapine, in regimens that reduce

the risk of HIV transmission by

only about two-fifths, and can

cause resistance to the drug in

women who may need it at a later

stage of their own HIV disease.

Very few received the triple

combination therapy that has

helped make vertical transmission

virtually a thing of the past in the

global North.

By and large, the 33 percent

represents women who didn’t get

contraceptives or other support

to avoid future unintended

pregnancies. What’s more, they

weren’t counselled about infant

feeding (or worse, got wrong

information), and were encouraged

not to breast-feed because, with

free supplies of formula, they

met one of the five conditions:

affordable. And, in a direct assault

on women’s rights as human

beings rather than just mothers,

most were sent home before

anyone bothered to find out if they

needed antiretroviral drugs for

their own health.

In other words, ‘substantial

progress’ in this four-pronged

program is determined by ticking

off any woman who gains access to

just one part of one prong.

Was this minimalist, inequitable

program effective at all? Did it

move the world any closer to its

goal of halving infections in infants

by 2010? Hard to tell, since only

8 percent of the babies born to

pregnant women with HIV in 2007

were tested for HIV by two months

of age.

One fact, however, is unequivocally

clear: the women who receive

‘PMTCT’ services as they’re

comprehensively defined amount

to far, far fewer than 33 percent.

We reject the double-talk that

touts failure as success, and

the double standard that values

wealthy women over poor. There is

a crying need for an honest global

evaluation to measure progress

against each of the four prongs and

every one of the guiding principles.

Instead of trumpeting a sham

triumph, the institutions involved

should initiate such an evaluation,

see which agency is responsible for

which shortfall, and draft a time-

bound plan to shape up. Women

would be better served if the entire

program were taken apart and put

back together in a realistic way,

keeping in mind that platitudes do

not keep women and babies alive

and healthy.

We sincerely hope that the

promised UN women’s agency

will ensure that prevention of

vertical transmission is the last in a

disgracefully long line of initiatives

for women to fall through the

gender-impervious cracks of the

UN system.

Stephen Lewis and

Paula Donovan

Co-Directors, AIDS-Free World

1

itpc, missing the target 7 | may 2009

vertical transmission of HIV (commonly known as mother-to-child

transmission)1 has been virtually eliminated in the global North. This

development—one of the rare, undeniable and ongoing success stories in

the global response to HIV/AIDS over the past quarter-century—is due to

most wealthier nations’ ability and will to provide HIV-positive women

with testing, counselling, comprehensive prevention and treatment,

including the best drug therapies available.

The situation is far different for women and families in poorer parts of

the world, however. The vast majority of the 1.5 million women with

HIV who become pregnant each year in the developing world do not have

access to all (or, often, any) of these vital services. Only about one-third

of them receive even the least effective drug regimen: a single dose of

the drug nevirapine for themselves and another for their newborns, a

therapy that has been shown to be at best, just over 40 percent effective

in preventing vertical transmission. Most have no access to or knowledge

of infant feeding guidance or support programs designed to keep mothers

and infants alive and healthy, if in fact such programs actually exist in

their countries or local communities.

The results are both tragic and outrageous: There are over 900 new cases

of HIV in babies in developing countries every day but these should have

been prevented because we know how (as evidenced in the developed

world) it can be done.

missing the target – women in the soUth

Research conducted for Missing the Target 7 by civil society activists on-the-

ground in six countries (Argentina, Cambodia, Moldova, Morocco, Uganda,

and Zimbabwe) shows that efforts to prevent vertical transmission are

failing to reach the very group it was designed for—HIV-positive

pregnant women.

One of the key reasons for this failure is that the emphasis of many

country programmes has been narrowly focussed on providing

antiretroviral prophylaxis to prevent the transmission of HIV to

newborns and not on the other essentials - prevention, counselling,

care and treatment services for women and children. Women’s right to

sexual and reproductive health in particular is ignored.

execUtiVe sUmmary

“My husband and I

decided that this baby

should be born. But

every time I go to my

gynaecologist I feel like

I mount the scaffold.

She talks to me like I

am a criminal.”

snezhana, 32-year-old hiV-

positive woman, moldova

1 Along with a handful of governments and others, we have chosen deliberately to use “prevention

of vertical transmission” in this report rather than the more common “prevention of mother-to-child

transmission” or “PMTCT”, used by all the UN agencies and most governments. Activists around the

world are campaigning to change the use of “PMTCT” as it adds to the stigma a woman faces by placing

the blame on her for HIV transmission to her child. Some governments also call the program “PPTCT”

or “prevention of parent-to-child transmission” to encourage greater male involvement. Many have also

advocated for the use of “PMTCT Plus”, in an effort to move the focus from a child-only program to

women and their families.

2

itpc, missing the target 7 | may 2009

At an implementation level there is a shocking lack of consistency and

coordination among the donors, UN agencies and governments. Poor

coordination has resulted most notably in a lack of clear and accurate

guidance being provided on infant feeding options to HIV-positive

mothers.

In country after country, researchers were told of the widespread stigma

and discrimination that HIV-positive pregnant women face, particularly

in health care settings. As one research team noted, “Women alone bear

the weight of preventing vertical transmission and the result of a possible

positive HIV test.”

missing the target – the global promise

Governments and UN agencies have failed to meet their international

commitments and should be called to account. Despite the relative ease of

delivering the antiretroviral prophylaxis to prevent vertical transmission

progress has been slow, with global coverage rising from 9 percent in 2004

to 33 percent coverage in 2007. At least three quarters of HIV-positive

pregnant women in 61 countries, including Cameroon, Ethiopia, India and

Nigeria, are still not receiving this intervention.

Moreover, it is not enough merely to ensure access to ARV prophylaxis.

Quality is equally important, and in this regard too the options for

women in poorer countries are far less appropriate and effective. In the

developed world, all women who want and need ARV prophylaxis can

obtain triple-dose combination therapy, which reduces the risk of vertical

transmission to a mere 2 percent. About half of women receiving ARV

prophylaxis in the global South, meanwhile, are provided with single-dose

nevirapine treatment. This regimen reduces transmission risk by just

over 40 percent, however, and puts women under the risk of developing

resistance to nevirapine, which is the backbone of many HIV treatment

regimens in general.

But this is just one measure of the failure of efforts to prevent vertical

transmission. Following the global commitment at UNGASS in 2001,

UN agencies designed a comprehensive program to prevent vertical

transmission. This program was based on promoting a woman’s right to

a continuum of care starting with sexual and reproductive health and

treatment through to psychosocial and nutritional support.

The four-prong strategy is stirring in focus and words, but actual progress

and achievements have been far more limited. With the proportion of

women among people living with HIV increasing in many regions, the

world is failing to deliver prevention programs designed specifically for

the benefit of women and girls.

We are failing to reduce the millions of unintended pregnancies in

HIV-positive women every year. We are failing to improve women’s

in 2001, world leaders agreed to a goal

of reducing the proportion of infants

infected with hiV by 20 percent by

2005, and by 50 percent by 2010,

including through ensuring that 80

percent of pregnant women accessing

antenatal care have information,

counseling and other hiV prevention

services available to them.

Declaration of Commitment,

UNGASS 2001

3

itpc, missing the target 7 | may 2009

access to HIV testing and counselling—in 2007, only 18 percent of the

world’s pregnant women were offered HIV tests. We are failing to stop

the widespread discrimination against HIV-positive pregnant women by

health care workers. We are failing to provide equal access to the most

effective antiretroviral treatment for women no matter which part of the

world they happen to live in. We are failing to ensure that every woman

is supported to make informed decisions on the safest way of feeding

her baby. We are failing to treat women and children—in 2007, only 12

percent of pregnant women living with HIV identified during antenatal

care were assessed for their eligibility to receive ARV treatment.

Our research for this report, Missing the Target 7, has reinforced the need

for governments, UN agencies, donors and indeed civil society to look

beyond the magic bullet of administering a pill each to mother and baby

in order to stem the annual toll of preventable infections and deaths

in newborns.

oVerarching findings

For this seventh edition of Missing the Target researchers identified

important barriers standing in the way of the continuum of services

needed to successfully prevent vertical transmission:

• The emphasis of governments and UN agencies has been on providing

antiretroviral prophylaxis to prevent the transmission of HIV to newborns

and not on the other essential prevention and treatment services for women

and girls. In many cases, neglect of the other services meant our

researchers were not even able gather reliable data on provision of

these services.

• There is a significant and dangerous inconsistency between national policies

and actual practice and the UN’s global infant feeding guidelines. Many

researchers found a bias towards formula feeding and a lack of

adequate support from health workers for women choosing to

breast-feed. This results in unsafe feeding practices that increase the

danger of post-birth HIV infection and/or of increased mortality and

morbidity from diarrhoea and infectious diseases.

• Country reports detail numerous ways in which health services are not

designed or delivered to meet the needs of women:

• health services are hard to access or too expensive, particularly in

rural areas

• care is not accompanied by necessary support for adherence, travel

and nutrition

• services do not reach the many women who do not access medical

facilities for delivery of their child or do so late in their term

• Inadequate integration between vertical transmission programs,

antiretroviral/HIV treatment services, maternal and child health,

sexual and reproductive health services complicates access to services.

in 2003, the Un adopted a

comprehensive approach to the

prevention of hiV infection in infants

and young children based on a four-

prong strategy:

1. primary prevention of hiV

infection among women of

childbearing age

2. preventing unintended pregnancies

among women living with hiV

3. preventing hiV transmission from

a woman living with hiV to her infant

4. providing appropriate treatment,

care and support to mothers

living with hiV and their children

and families.

Guidance on Global Scale-Up Of

The Prevention of Mother-To-Child

Transmission of HIV, WHO 2007

4

itpc, missing the target 7 | may 2009

• Stigma, discrimination, violence and the threat of violence are powerful

realities in the lives of many women in the countries. This report’s

research chronicles numerous kinds of discrimination against HIV-

positive pregnant women by health care workers, including breach of

their right to confidentiality. This remains a key barrier in the uptake

of services by HIV-positive women.

coUntry-specific findings

The country case studies make clear that international partners share

some of the blame, particularly because they too often fail to coordinate

programs to help promote more integrated, comprehensive health care

for women. However, it is equally clear that many of the obstacles are

wholly local in nature: National governments and policymakers are

often unable or unwilling to initiate or sustain health care programs and

reforms that would improve women’s access to services and, by extension,

reduce rates of vertical transmission.

Four out of the six countries in the report are low-burden ones:

Argentina, Cambodia, Moldova and Morocco. In these places, therefore,

eradicating vertical transmission is within the countries’ reach and could

be accomplished in 1-2 years, given adequate resources and attention.

In Uganda, where the epidemic is larger, this quest will take more time

and will require more government commitment. In Zimbabwe, it is hard

to see how progress will be made in the current context of absolute

economic and political collapse. The fate of women and their children in

that nation is likely to be improved only with the establishment of a new

government that considers itself accountable to its citizens.

In addition to these overarching themes, there were unique findings in

each country:

• In argentina many pregnant women do not visit health centres

until late in their pregnancy. There is no gender-specific HIV strategy

within the government’s HIV prevention program, and most cases of

HIV infection among infants stem from the lack of antenatal care and

insufficient information and counselling provided to women on HIV/

AIDS and sexual and reproductive rights. Health care access varies

widely across the country, and stigma and discrimination from health

care workers impedes service utilization. Violence against women

remains relatively common but few linkages exist between HIV

services and anti-violence programs.

• In cambodia the majority of births occur outside medical facilities

because of limited opening hours and transportation and financial

barriers faced by women. Stigma and discrimination by health

care workers was also cited as the reason for high drop-out from

the existing program. ARV prophylaxis was not provided to either

mothers or infants in 88 percent of births involving an HIV-positive

mother. There is limited awareness of vertical transmission services

5

itpc, missing the target 7 | may 2009

even among health care workers, and women are provided with

wrong information on infant feeding – with a bias towards formula-

feeding. Existing programs are not well integrated into broader health

care, and follow-up of women, children and their families is limited.

• In moldova HIV-positive women reported that the quality of pre- and

post-testing counselling is very low, and there was a general lack of

awareness about vertical transmission, including the risks of mixed-

feeding. Lack of budget financing is a barrier to the implementation

of the strong commitment to providing HIV services, and there is no

gender-specific approach in the national HIV program. Women in

rural areas have difficulty accessing care, and half of all of the women

surveyed encountered discrimination from health workers.

• In morocco access to antenatal services is limited and many HIV-

positive pregnant women are not identified for lack of HIV testing,

especially in rural areas. The fear of stigma and discrimination is a

major barrier for women to get tested, both at home and in health

care settings. Breast-feeding is contraindicated by the Ministry of

Health (an outdated recommendation), but formula is provided in

only three cities and only 56 percent of the rural population has

access to safe drinking water. Lack of coordination among involved

agencies (such as between UNFPA who focus on both maternal

and child health and sexual and reproductive health and other UN

agencies like UNICEF and UNIFEM) limits their overall effectiveness.

• In Uganda fewer than half of the health facilities that provide

antenatal care provide other prevention of vertical transmission

services, and options offered at family planning clinics for avoidance

of unintended pregnancies are limited. Services are particularly

difficult to access in some rural areas and in the post-conflict

northern region, and regular ARV stock outs and shortages of health

workers, infrastructure and supplies all undermine access. HIV-

positive women reported feeling they could afford neither breast-

feeding nor replacement feeding because of their own poor nutrition

and financial barriers, leading them to more risky mixed feeding. Also

HIV-positive mothers are encountering stigma and discrimination at

home and from health care workers.

• In Zimbabwe prevention of vertical transmission services were

among the best performing HIV programs in the country, but years of

economic and political turmoil have led to the collapse of the health

system, periodic suspension of services, and unaffordable hospital and

transport fees. There is a severe shortage of health care workers and

frequent drug stock-outs, and an increasing number of women deliver

their babies at home, without antenatal services, post-delivery support

or follow-up. Shortage of trained staff also means many pregnant

women do not receive sufficient advice on infant feeding. Violence

against women has long been among the most significant deterrents

to uptake of HIV/AIDS services for women.

6

itpc, missing the target 7 | may 2009

oUr recommendations

UN agencies were instrumental in helping set the vital goal of universal

access to HIV prevention, treatment and care for women, men and

children. Their follow-through has been far less notable and effective,

however. Persistent inability and unwillingness to collaborate effectively

is a key reason for their poor collective performance. They must

enhance and improve coordination among themselves and key partners

at all levels—global, national and local—as part of a renewed focus on

meeting universal access goals. Priority actions aimed at halting vertical

transmission include the following:

• UN Secretary-General Ban Ki-moon and the heads of UNAIDS,

UNICEF, WHO, the Global Fund and PEPFAR should hold an

international summit to assess global barriers to scale up vertical

transmission services. At this summit, they should clearly and

publicly take joint leadership responsibility and recommit their

agencies to providing comprehensive vertical transmission services

to all women in need. They should also publish a plan of action to

increase quality coverage.

• At UNGASS in June 2010, UNAIDS, WHO and UNICEF should measure

and report progress made in preventing vertical transmission

based on all four prongs of the UN’s comprehensive strategy.

Current practice—focusing nearly exclusively on the provision of

prophylaxis—is insufficient and no longer acceptable.

All partners involved in meeting targets on preventing vertical

transmission must agree on a set of clear priorities and coordinate work

to achieve them. However, it is governments who bear the ultimate

responsibility for ensuring that their citizens’ right to health is upheld.

The following are among the specific outcomes that national governments

should lead on delivering with the support of donors and UN agencies:

• governments should increase access to the most effective

triple-dose prophylaxis regimen to prevent HIV transmission to

newborns. Currently, just 8 percent of those treated have access to

this regimen; the majority of HIV-positive pregnant women and their

infants with access to prophylaxis have no option but to take the far

less effective single-dose regimen.

• governments should issue revised national infant feeding

policies that are consistent with global guidelines and latest

research. WHO and UNICEF should support this process and also

regularly assess implementation of these guidelines in the field and

consistently and publicly release results.

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• donors and governments should increase funding and

implementation prevention programs specifically benefitting

pregnant women, including programmes aimed at reducing violence

against women and girls.

• Unaids, Unfpa and Unicef should provide technical support

to governments to better integrate programs for the prevention

of vertical transmission with sexual and reproductive health and

rights, family planning, and maternal and child health.

• governments should revise the program and increase budget

allocations in order to treat women, children and families

who are identified as needing ARVs during the course of accessing

prevention of vertical transmission services. Far too few women

and children are being followed up with the provision of treatment.

Globally, in 2007, only 12 percent of women got assessed on the need

for treatment and this is a deplorable missed opportunity.

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United Nations agencies and global funding initiatives (such as the

Global Fund and PEPFAR) have fundamental responsibility for realizing

the potential of comprehensive services to prevent vertical transmission

of HIV. These entities must be funders, coordinators, technical advisors

and global champions. The research in the six countries covered in this

report suggests that although several global entities have made important

contributions to delivery of comprehensive services, their individual

impacts have been constrained by insufficient linkages and collaboration.

Taken together, these fragmented contributions have not led to the kind

of robust, consistent programming needed to ensure rapid and

sustainable improvements.

It is notable that even though Missing the Target researchers asked their

diverse set of key informants specifically about the role of global agencies,

the response was limited in most countries. This suggests that these

global agencies need to be far more visible as advisors and advocates

for comprehensive prevention of vertical transmission services that are

integrated with HIV, maternal/child health, and sexual and reproductive

services. Importantly, UNICEF has launched several high-profile

campaigns, including Unite for Children, which includes a primary goal to

ensure that appropriate vertical transmission services are available to 80

percent of women in need by 2010. In 2005, UNICEF and WHO convened

the first High-Level Global Partners Forum on PMTCT. Such efforts

must be expanded, which in turn means the agencies need significantly

increased resources to do their important work in the field.

Missing the Target researchers consistently heard of the need for global

actors to coordinate their efforts much more closely in the countries

where they work. The Interagency Task Team on Children and HIV

and AIDS (IATT)1, led by UNICEF and composed of representatives

from UNAIDS co-sponsors, donors, NGOs, academic institutions and

other organisations, is charged with helping coordinate policy and

programming on the country and global level. Research for this report

suggests that the IATT needs to be far more conspicuous and play a more

active and aggressive role in the field. IATT should establish a website

that serves as a clearinghouse of best practices, partner with health

consumers and advocates, and become a more vocal advocate for change

globally. In addition, IATT membership must become more transparent

and programming must be better informed by the experience of local

NGOs working on the ground.

improVing the global response

1 More on IATT at www.unicef.org/aids/index_iatt.html

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It is important to note, however, that no matter how or if they change,

UN agencies and other global entities can only be as useful as individual

governments allow them to be. The agencies serve the governments,

which have ultimate responsibility for overseeing service provision for

their citizens. Global partners can and should offer extensive support to

governments that show a clear interest in developing realistic policies and

programmes to reduce vertical transmission.

An example of potentially useful process would be to have Country

Coordinating Mechanisms (CCMs) and National AIDS Councils work

closely together to assess barriers to care utilization and lay out costed

action plans to expand, improve and monitor services. These plans must

have both quantitative and qualitative targets, milestones and deadlines.

UNAIDS and UNICEF should assess these plans and give feedback to

countries on their strengths and weaknesses. All these coordinating

bodies—whether working internationally or in affected countries—should

include greater representation of the people who are actually meant to

use the services. For example, local civil society organizations, including

organizations comprised of people living with HIV, should be involved in

ongoing advocacy to encourage governments to act more responsibly and

consistently, including in regards to addressing stigma, discrimination

and violence against women. Such organizations should be supported in

building essential watchdog capacity to ensure that governments meet

their commitments.

In the area of infant feeding programs there has been an overall failure

in terms of coordination of efforts from policy to program level.

Although UN guidelines have become relatively clear, global

agencies and mechanisms such as PEPFAR and the Global Fund have

not been coordinating effectively to implement these guidelines in a

consistent manner.

The latest UN guidelines recommend for infants of HIV-infected women

exclusive breast-feeding for the first six months of life unless replacement

feeding is acceptable, feasible, affordable, sustainable and safe (AFASS)

for them and their infants before that time. This report found clear

gaps between international infant feeding guidelines, their integration

into national policies, and their implementation on the ground. The

guidelines have changed over time and some countries need to do more to

ensure their policies and program guidelines are up to date. Health care

personnel at all levels need additional training to help ensure adequate

awareness and to ensure their ability to help health consumers make fully

informed choices.

AFASS guidelines are meant to be assessed at an individual rather than a

national level, but several reports suggest these assessments are primarily

made nationally. Many of our researchers found disproportionate

emphasis on the “affordability” piece of AFASS guidelines. Governments

should ensure that the full package of child survival and reproductive

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health interventions with effective linkages to HIV prevention as well

as the AFASS and other conditions contained in the UN guidelines are

available before any distribution of free commercial infant formula is

considered. Monitoring of infant health is crucial and it is not clear this is

being done effectively in many countries.

The best way to ensure that infants are not born with HIV or acquire

it during breast-feeding is to provide HIV-positive women the care they

need for their own HIV disease. Vertical transmission is certainly an issue

where the false dichotomy pitting prevention and treatment against

each other is truly nonsense—in studies where HIV-positive women

get appropriate care, HIV transmission to infants is largely eradicated2.

Vertical transmission programs must be linked with HIV treatment

programs. The HIV-positive pregnant women most at risk for transmitting

HIV to their infants are also the sickest women who are at greatest risk of

dying and in most need of treatment for their own health. Their right to

health is abridged in the absence of adequate care and treatment.

One of the clearest conclusions from this edition of Missing the Target is the

significant role that stigma, discrimination and violence play in the lives

of many women and the tangible impact of these forces on utilization of

care. Such negative phenomena are even more pronounced among HIV-

positive women in nearly every society; as such, they require a global

response. A well-funded and coordinated effort is needed to test and then

bring to scale the most effective responses to address these issues. One

priority is to support programs and then measure progress in reducing

stigma and discrimination specifically in health care settings.

The research in this report suggests many opportunities for global

agencies, national governments, and major donors to improve the reach

and effectiveness of prevention of vertical transmission services. The

recommendations proposed in the Executive Summary focus on some of

the initial, priority action steps and interventions.

2 Townsend, C.L., Cortina-Borja, M., Peckham, C.S., De Ruiter, A., Lyall, H., Tookey, P.A. Low rates of

mother-to-child transmission of HIV following effective pregnancy interventions in the United Kingdom

and Ireland, 2000-2006 (2008) AIDS, 22 (8), pp. 973-981.

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Country Reports

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Argentina

General coordination: Lorena Di Giano, AIDS activist

Interviews: Lorena Di Giano, Pablo García, and Alcira González

Report author: Lorena Di Giano

research process and methodology

research for this report was conducted from november 2008 to January 2009. it

consisted of an extensive review of documents and websites from governmental

and non-governmental sources; in-depth interviews based on semi-structured

questionnaires; and two focus groups. one focus group comprised five health care

workers, while the other was composed of four hiV-positive mothers, one of whom was

pregnant at the time.

a total of 23 people were interviewed in six cities across argentina: buenos aires,

mar del plata, montegrande, rosario, tres arroyos, and tucumán. they included

representatives from Un agencies (Unaids, Unfpa and Unicef); national aids

authority staff; local aids program managers; health workers (paediatricians,

psychologists, social workers, nurses and prevention of vertical transmission

specialists); human rights advocates; women living with hiV; health care users living

and not living with hiV; and a manager of a home for hiV-positive children.

1. backgroUnd information

According to government estimates released in August 2008, about

134,000 HIV-positive individuals currently live in Argentina. Of those,

about half are thought to be unaware of their status. Women comprise

approximately one quarter of all people living with HIV, with the majority

of cases among women aged 30 to 39.

Between 1986 and 2007, a total of 3,857 individuals under 14 years

of age were diagnosed with HIV. The annual number of new HIV

cases among infants and children began to decline in 2002 following

the implementation of a national coordinated prevention of vertical

transmission policy. Of the 1,493 reported cases of HIV infection among

people under age 14 diagnosed between 2001 and 2007, 92 percent were

attributed to vertical transmission, 1 percent to blood transfusions and 1

percent to other causes. (The transmission cause was unknown or unclear

in the remaining 6 percent of cases.)

key points

1. no specific gender-based hiV

prevention strategies exist within

the government’s hiV prevention

program..

2. disparities occur around argentina

in terms of health care availability

and quality. in some cities fewer

than 70 percent of pregnant women

take an hiV test prior to going into

labour, despite a national policy for

all pregnant women to be offered hiV

testing.

3. health professionals reportedly

place disproportionate priority on

children’s rights over those of women,

and women often receive inadequate

information about their own rights,

including that of informed consent

and the provision of appropriate

counselling before and after hiV

testing.

4. Un agencies at the global level

should coordinate more effectively

and consistently with Un country

offices to implement and promote

international recommendations at

country level.

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Country Reports, Argentina

2. statUs of serVice deliVery among

and for women

primary preVention among women

Limited data exist in Argentina as to the main HIV risk and vulnerability

factors for women1. This is mainly due to the fact that there are no

specific gender-based HIV prevention strategies within the government’s

HIV prevention program; instead, messages and interventions are

common to all populations.

Pregnant women are the key focus of HIV prevention efforts among

women. This effort is helped by the fact that most women begin to access

health care during pregnancy.

reprodUctiVe health needs of women liVing with hiV

As noted through the research, a core demand of women living with HIV

is increased access to contraceptives and other materials that can help

increase their control over their reproductive lives. They also want better

access to family planning counselling and sexual and reproductive rights

information as part of routine health care.

Recent steps appear to have been taken to address these needs. With the

support of UNFPA, the national AIDS authority is seeking to reinforce

prevention of vertical transmission interventions by developing a set of

guidelines that will contain recommendations for counselling, care

and other interventions for women and their sexual partners. These

guidelines will also refer to specific sexual and reproductive health needs

of women living with HIV. The authority plans to finalize the guidelines

by mid-2009.

preVention of hiV transmission from mother-to-child

In general, pregnant women’s access to HIV testing is high due to the

implementation in 2001 of a national policy mandating that all pregnant

women be offered an HIV test at the first level of health care. However,

one result of Argentina’s federal system is that there are great disparities

around the country in terms of health care availability and quality,

including in regard to prevention of vertical transmission coverage

and services. In some cities fewer than 70 percent of pregnant women

take an HIV test prior to going into labour2. According to the national

AIDS authority, persistent limitations in HIV testing coverage in some

regions and areas (especially outside the major urban areas) are related to

bureaucratic inefficiency and deficient logistics systems.

“Adherence is possible

even in the worst socio-

economic context. We

should continue expanding

antiretroviral treatment

for all populations.”

local aids program manager,

rosario city

1 A recent study on female sex workers is an exception: “Estudio social en trabajadoras sexuales:

Saberes y estrategias de las mujeres trabajadoras sexuales ante el VIH/SIDA y otras ITS”, EMIGT team,

CEIL-PIETTE/CONICET, final report released December 2007.

2 Differences persist across the country in terms of share of women who are tested for HIV during

pregnancy. The percentage is highest (and thus above 70 percent) in major urban areas such as Buenos

Aires and Mar del Plata.

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Country Reports, Argentina

Other research findings include the following:

• There was a general agreement among respondents that the most

important challenge regarding prevention of vertical transmission is

the fact that many pregnant women do not visit health centres until

relatively late in their terms. This is particular true in communities

isolated by geography and characterized by relatively low income and

education levels3.

• Rapid HIV tests are available in more than three quarters of

Argentina’s 24 provinces. However, findings indicate an urgent need

to build appropriate capacity among health workers in order to

optimize clients’ opportunity to access this testing mechanism.

• Antiretroviral prophylaxis for use during pregnancy, labour and

delivery is widely available across the country. Most respondents

agreed that although adherence to prophylaxis is relatively high, it

is certainly not universal. Therefore, more energy should be invested

in creating and promoting programs that focus on treatment literacy

and adherence, as well as on reinforcing psychological and social

support offered during pregnancy.

• One important impact from the scale-up of prevention of vertical

transmission services has been an improvement in the scope and

quality of other services for pregnant women. Such improvements

include the capacity for early diagnosis of other STIs, increased

priority given to pregnant women in health care settings in general,

and enhanced availability and accessibility to a comprehensive range

of antenatal care services in several jurisdictions. The overall result

has been an increase in inclination and ability among all pregnant

women to obtain health care during and after pregnancy.

• In general, the expansion of prevention of vertical transmission

strategies has not been accompanied or followed by an increase in

human resources. This means that existing health workers have far

more duties and responsibilities, thereby compromising their

capacity to provide thorough and appropriate care and services in

many instances.

proVision of serVices for hiV-positiVe mothers, their

partners and their families

The findings of the research indicate that policymakers recognize the

need for a comprehensive approach to prevention of vertical transmission

services that includes not only HIV-positive mothers but their partners

and close relatives. Priorities in many settings include post-partum

adherence to treatment by HIV-positive mothers as well as infant follow-

up, care and treatment provision.

3 Missing the Target # 6: The HIV/AIDS response and health systems: Building on success to achieve

health care for all, Argentina country report, July 2008, p. 12.

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Country Reports, Argentina

Research indicates that in most facilities the identification of HIV

infection among women in prevention of vertical transmission programs

is used as an entry point to recommend HIV testing and counselling to

other family members. However, all respondents noted that the number

of sexual partners who make use of these services is still extremely low.

The MoH has begun promoting a new program in certain jurisdictions

with the goals of providing more accurate and comprehensive care for

pregnant women, their children and couples; securing early diagnosis and

treatment to prevent vertical transmission of syphilis; and stimulating

greater uptake of HIV testing. The components of this program are aimed

at reinforcing HIV prevention interventions.

proVision of serVices for infants and children liVing

with hiV

Although the number of new infections among children has decreased

sharply over the past several years (as noted previously in this report),

greater efforts are needed to ensure that progress continues. Most cases

of HIV infection among infants and children stem from insufficient

information and counselling provision among women in regards

to HIV/AIDS and sexual and reproductive rights and the lack of adequate

antenatal care during pregnancy. Respondents consider all new cases to

be inexcusable given the broad prevention mechanisms

currently available.

Universal free access to treatment and care for HIV-positive people is

guaranteed by law in Argentina. According to some respondents, however,

this guarantee has proved meaningless at times because paediatric

formulations of ARVs are often not available on a regular basis. The

government blames such shortcomings on the limited number and type

of such formulations on the global market.

In regards to the provision of other services for HIV-positive children,

respondents said there is an urgent need to develop practical standardized

protocols in non-medical areas as well. Such protocols ideally would

include guidelines for health care personnel in regards to discussing

issues such as disclosing HIV status and managing treatment adherence

among children. Strategies are also needed to overcome challenges related

to older children’s passage to adolescence and adulthood, milestones that

require new and different types of care.

In general, a more comprehensive approach is needed. The promotion

of networks between health care providers at local levels and more

centralized HIV/AIDS reference centres would provide the protective

environment children and their families need. Policies should be more

focused on social necessities in terms of treatment and care, such as

covering transportation costs, responding to nutritional needs, and

promoting better levels of adherence.

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Country Reports, Argentina

barriers to comprehensiVe serVice deliVery and

lessons learned

Lingering HIV-related stigma and discrimination—especially at the

provincial level and in small communities—remains an obstacle that

many PLWHA face in regards to access to comprehensive HIV/AIDS

human rights information, prevention, treatment, care and support.

Other major problems include excessive bureaucratic requirements that

frustrate easy and timely access to routine diagnostics (CD4 and viral

load tests) and poorly performing drug logistics and supply systems in

some jurisdictions.

Some health professionals place disproportionate priority on children’s

rights over those of women in prevention of vertical transmission

interventions. This means that some women receive inadequate

information about their own rights, including that of informed consent

and the provision of appropriate counselling before and after HIV testing.

Researchers also found that in many facilities, counsellors only provide

HIV information to women when test results are positive.

The following are among the lessons learned in the ongoing effort to

bring a comprehensive set of services to scale in Argentina:

• More extensive information-sharing and networking between primary

health care facilities and ART centres have helped to scale up access

to comprehensive HIV treatment, care and support services, including

those related to prevention of vertical transmission, among women

living HIV.

• Improved integration of prevention of vertical transmission programs

with services to prevent and treat other STIs (e.g., a program to

control congenital syphilis) has increased opportunities for women

and their families to access HIV counselling and testing services.

• The use of HIV-positive mothers as peer counsellors in prevention

of vertical transmission centres has improved provision of care and

support as well as increased pregnant women’s confidence in

public services.

3. hiV testing: access and other issUes

General HIV testing policy in Argentina follows the traditional model

of client-initiated voluntary counselling and testing (VCT). According to

official regulations, VCT should be provided freely at reference centres

and comply with three principles: i) informed consent, which refers to

an individual’s right to agree or not agree to be tested only after being

provided with extensive information about what the test means; ii)

pre- and post-test counselling, which should include the provision of HIV

prevention and care information; and iii) confidentiality on the part of

health care personnel in regards to not only the test results but the actual

fact that the testing itself took place.

“Many pregnant women

cannot find the time or

money to seek the highest

quality care even when

it is available free of

charge. For example, one

woman recently told me,

‘Doctor, I already have

four other children and

I can’t go to the health

centre very easily’.”

local aids program manager,

mar del plata

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Country Reports, Argentina

The provider-initiated testing model for pregnant women has been

in place since 2001, as part of the national prevention of vertical

transmission policy. Under this model, pregnant women are offered HIV

testing in all settings at the first level of care. This MoH-recommended

strategy, which is based on the importance of early detection of HIV, calls

for an initial test during the first three months of pregnancy and a follow-

up test during the final trimester. Standard ELISA tests are currently used

in most cases; the use of rapid tests is only indicated in cases where the

mothers in labour have not yet been tested for HIV.

HIV-positive women respondents said they generally feel comfortable

disclosing their status and discussing it openly in health care settings.

Managers of HIV testing reference centres acknowledged the ongoing

challenge of ensuring confidentiality in small communities where

health care workers and patients are more likely to share friends, family

members, etc.

Current national laws protect the right of adolescents to seek out and be

tested for HIV on their own. Respondents in many health centres said,

however, that parental authorization is often requested for those under

the age of 21. This practice goes against the basic rights of adolescents

to privacy and confidentiality and constitutes an important barrier that

should be removed.

According to the findings, there is also a need to focus more on

integrating HIV testing and counselling in primary health facilities, build

capacity among health care workers in order to optimize information

and counselling provision, and ensure confidentiality of HIV test results.

Several respondents also recommended improving efforts to help women

manage ‘guilty feelings’ about the possibility of transmitting HIV to

their babies; to prepare them for disclosing HIV-positive results to their

partners and relatives; and to face and withstand potential HIV-related

stigma and discrimination.

The issue of ‘guilty feelings’ is encapsulated in the following quote

from an HIV-positive woman interviewed in Mar del Plata: “When I was

diagnosed I was in the third month of my pregnancy. My first reaction

was fear—of transmitting the virus to my son....I cried a lot even after my

doctor told me the treatment was almost certainly going to be effective.

This feeling of fear and concern was present until I gave birth. Luckily my

son is not infected.”

4. infant feeding gUidelines and trends

The government’s national policy recommends that HIV-positive mothers

do not breast-feed their newborns. Counselling is provided to mothers

so they can make informed decisions about whether or not to follow

this recommendation. The cost of formula is not usually a factor in

such decisions because replacement feeding is available free of charge

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Country Reports, Argentina

4 Amnesty International in Argentina: “Muy Tarde, Muy Poco”, November 2008.

5 Statistics published by Amnesty International show that in the first 10 months of 2008, at least 110

women in Argentina were killed by a family member, a partner or a former partner.

and accessible across the country to women in need, and is distributed

through the national procurement chain. Advocates note, though, that

stock-outs of formula are occasionally reported. PLWHA networks play a

major role in monitoring stock-outs and subsequently demanding that the

government respond immediately to address the shortfalls.

Most health care facilities provide extra counselling and psychosocial

support for HIV-positive mothers as part of an effort to counter a

strong cultural tradition in favour of breast-feeding. Respondents report

that such efforts have been largely successful and that adherence to

replacement feeding is high.

5. impact of Violence and stigma

The Argentinean government has repeatedly declared its commitment

to improve the status of women and to eliminate discrimination and

violence against them. However, a recent report4 on gender violence

indicates that violence against women remains relatively common within

many families and in many communities5. Some of the blame can be

placed on tradition and culture, but at the same time the government has

done far too little to address the problem. No extensive official data exist

as to the magnitude and characteristics of violence against women, and

the weak and limited public policies in place have proved ineffective in

safeguarding women’s rights and safety from abuse.

The vulnerability of most women is increased by the lack of employment

and economic opportunities available to them in comparison with men,

and sexism is ingrained in the male-dominated police and judiciary

systems. Such economic and social barriers limit women’s freedom and

autonomy in all respects, including in regards to their ability to take care

of themselves and their children.

Vulnerability is increased when a woman is diagnosed with HIV (often

during pregnancy) and then must inform her partner and/or family

members. Such disclosures can prompt violent reactions related not only

to the HIV itself but to other sensitive issues such as infidelity and sex

in general.

HIV/AIDS service providers have yet to respond adequately to either the

threat or reality of HIV-related violence against women. Few linkages exist

between HIV services and anti-violence programs in general.

“In our country it’s not

incorporated in the practice

of health care centres that

women living with HIV

can or should plan their

pregnancies.... Family

planning is not considered

a routine offering.”

Unfpa representative in argentina

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Country Reports, Argentina

6. assessing the work of global agencies

The support of international donors and agencies has been crucial

in terms of improving HIV/AIDS services for mothers and children

in Argentina. Major scale-up, especially in prevention of vertical

transmission services, began in 1997 with the implementation of a project

(named LUSIDA) financed by the national MoH and the World Bank.

Those efforts have been reinforced with the support of Global Fund grants

awarded more recently.

There is substantial room for improvement on the part of UN agencies.

For example, it would be helpful if UN agencies at global level coordinated

more effectively and consistently with UN country offices to implement

and promote international recommendations at country level. Country

officials are often unfamiliar with global guidance produced by UN

agencies at the international level.

UN agencies should reconsider the decision to eliminate UNAIDS Theme

Groups at the country level. These decision-making spaces within the UN

system provide important opportunities for UN agencies, government

representatives and civil society representatives to identify and develop

responses to the real HIV-related priorities at country level.

All global agencies should also redouble their efforts to include and/or

maintain the involvement of local civil society in all country-

level processes.

recommendations

national and local health authorities should work together and

in partnership with civil society—including people living with

hiV—to:

• undertake operational and other research to i) identify factors that

increase women’s and children’s vulnerability to HIV infection, and ii)

continuously improve the comprehensiveness of prevention of vertical

transmission programs;

• develop gender-based HIV/AIDS prevention programs that focus on

the specific risk factors and needs of women;

• incorporate PLWHA-provided peer counselling in all strategies and

programs related to prevention of vertical transmission;

• include sexual and reproductive health care and family planning as

essential interventions for HIV prevention, care and treatment;

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Country Reports, Argentina

• place greater priority on including women from the most at-risk

groups in designing, implementing and monitoring HIV/AIDS service

programs. Such efforts will help make prevention and treatment more

readily available, accessible and acceptable for all women in need;

• improve logistics and supply systems for replacement feeding for HIV-

exposed infants in order to prevent stock-outs;

• review current infant feeding guidelines for HIV-positive women with

the goal of updating them in accordance with the latest international

WHO recommendations; and

• integrate HIV testing and counselling in all of the country’s primary

care facilities and eliminate all barriers that prevent children and

adolescents from seeking HIV testing, treatment, care and support

services in a confidential manner.

in partnership with civil society and with the support of global

agencies, the moh should work with other ministries (at the

national and local level) to develop human capacity at all levels

through training in order to:

• reduce HIV-related stigma and discrimination;

• ensure compliance with the principles of informed consent and

confidentiality;

• promote greater awareness and sensitivity to human rights and

gender-specific issues among health workers;

• improve the quality of HIV information and counselling provision;

• enhance coordination between HIV/AIDS services and anti-violence

referral services; and

• promote treatment literacy among women and children living

with HIV.

civil society should:

• improve its capacity to monitor HIV-related policies and programs at

national and local level; and

• enhance its capacity to develop and implement advocacy strategies

and facilitate policy change in all HIV-related priority areas.

global agencies should devote more energy and resources to:

• galvanize political will and mobilize resources to reach the goal of

universal access to comprehensive HIV prevention, treatment, care

and support for women and children.

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Cambodia

By Dr. Kem Ley, freelance consultant on HIV and health, and Umakant Singh,

Norton University

research process and methodology

this report is based on i) a desk review of documents including the national strategic

plan for pmtct 2008-2015, the national prevention of vertical transmission guidelines

from 2005 and the 2007 cambodia pmtct program Joint review report; and ii) a total

of 25 interviews with key informants. interviews were conducted with government

representatives (10 individuals total) from the national maternal and child health

centre, the national aids authority, the national centre for hiV/aids dermatology

and stis, and the takeo provincial health department; one person each from three

Un agencies (Unaids, Unfpa and Unicef); eight representatives of international and

local ngos, including actionaid international, care, world Vision, family health

international, hiV/aids coordinating committee, the cambodian community of

women living with hiV/aids, and the cambodian people living with hiV/aids

network; and four individuals associated with a private-sector maternity and a

children’s hospital. researchers also conducted a roundtable discussion with 25

midwives and held two focus group discussions with pregnant women, one in an urban

area at takeo health centre (10 women), and one in a rural area at samrong health

centre (12 women).

1. backgroUnd information

Estimated HIV prevalence among adults (15 to 49 years of age) in

Cambodia has declined from a peak of 2.3 percent in 1997 to about 0.9

percent in 2006. Projections indicate that, if interventions are sustained at

current levels, HIV prevalence will further decline before stabilising at 0.6

percent by 2011. However, a resurgence of the epidemic cannot be ruled

out given the relatively high prevalence among most at-risk populations,

including female sex workers, their clients and other sexual partners;

men who have sex with men (MSM); and injecting drug users (IDUs).

For example, a study in 2008 conducted by the MoH and the Ministry of

Interior indicated that HIV prevalence among IDUs is 24.4 percent.

Based on new HIV prevalence estimates and projections, the number of

people living with HIV (PLHIV) was estimated at 64,750 (including 3,350

children under the age of 15) in 2007. Some 29,200 adults were in need

of antiretroviral therapy (ART), a number that is expected to increase to

35,100 by 2010.

Cambodia’s prevention of vertical transmission program was started

in 2000 with the formation of a national technical working group and

prevention of vertical transmission secretariat at the National Maternal

and Child Health Centre (NMCHC). Since then there has been a gradual

increase in the percentage of HIV-positive pregnant women who receive

ART to reduce the risk of vertical transmission; that share increased from

key points

1. policies, guidelines, and a strategic

plan are in place in cambodia to

meet the Un’s four-pronged strategy

to prevent vertical transmission,

however, practical application has

been limited.

2. the majority of births (78 percent)

occur at home or outside public

health facilities in which prevention

of vertical transmission services are

available. as a result, the vast majority

of women of childbearing age miss the

opportunity to be tested for hiV.

3. access to prevention of vertical

transmission services is hindered

by poor integration with broader

health care services, most notably key

maternal and child health services.

4. health care providers are

directed to provide all mothers with

information on the potential risks

and benefits of all forms of feeding;

however, many public-sector and

civil society personnel reportedly are

heavily biased in favor of the formula

feeding option.

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Country Reports, Cambodia

7 percent in 2004 to 14 percent in 2007. Meanwhile, estimated vertical

transmission declined from 30.5 percent of all births to HIV-positive

women in 2001 to 11.4 percent in 20076.

In 2007, the prevention of vertical transmission program tested and

provided pre- and post-test counselling to 16.1 percent of Cambodia’s

pregnant women. It also provided ARV prophylaxis to 11.2 percent of the

estimated total number of HIV-positive pregnant women and later to their

newborns. The low level of coverage is highlighted by the fact that 83.9

percent of all Cambodian pregnant women in 2007 did not know their

HIV status and no ARV prophylaxis was provided to either mothers or

infants of 88 percent of births involving an HIV-positive mother.

As of September 2008, there were 154 sites and 76 operational districts

with at least one health centre providing prevention of vertical

transmission services.

2. statUs of serVice deliVery among

and for women

Several different government agencies share responsibility for HIV/AIDS

services of importance to women. NMCHC implements prevention of

vertical transmission intervention within its maternal and child health

(MCH) services unit; the National Centre for HIV/AIDS, Dermatology and

STDs (NCHADS) provides VCT, ART and OI services; and the National

AIDS Authority (NAA) has a national coordination and resource

mobilization role.

The prevention of vertical transmission program has benefited from

money provided through Rounds 4 and 7 of the Global Fund as well

as various UN agencies, bilateral agencies (notably those of the United

Kingdom and the United States), and international and national NGOs.

(Cambodia was hoping to use resources from the Global Fund’s Round 8 to

further scale up the PMTCT program, but the country’s proposal for that

round was denied. A new proposal is being prepared for consideration for

Round 9 funding.)

The Cambodian prevention of vertical transmission policy and strategic

plan 2008-2015 requires that services be based on the UN’s four-prong

strategy7. The policies, guidelines and standard operating procedures for

all of the prongs are in place in Cambodia, but practical application has

been limited. As observed by some NGO respondents, “Everything is clear

on paper, but not in implementation.”

6 Towards Universal Access report 2008, UNAIDS and WHO.

7 Additional information about the UN’s four-prong strategy may be found online at www.unicef.org/

aids/index_preventionyoung.html.

“With PMTCT policy,

strategic plan, SOPs and

guidelines, we have the

foundation for a scaled

response, and we are

confident in achieving the

universal access target for

PMTCT in 2010.”

tony listle, Unaids

country representative

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Country Reports, Cambodia

Members of the Cambodia country team developed a scorecard, based on

a scale of A to D8, to measure each of the four prongs’ availability and

implementation to date. The results are as follows:

1. Primary prevention of HIV infection (Prong 1): B+. Many institutions,

including the NAA, UN agencies and NGOs, focus on primary

prevention among the general population, but few programs

specifically target women and girls. The Ministry of Women Affairs’

strategic plan for the prevention of HIV/AIDS among women and

girls 2008-2012 intends to address the gap by increasing primary

prevention among women and girls.

2. Prevention of unintended pregnancies among HIV-positive women

(Prong 2) is weakest and can be given a C. The main reason is lack

of positive prevention programs and insufficient access to condoms.

However, the revised National Strategic Plan for Comprehensive and

Multispectral Response to HIV/AIDS (2008-2010) focuses on positive

prevention and scaling up for increased access to prevention of

vertical transmission services.

3. Prevention of HIV transmission from mother-to-child is between B+

and C-. Despite the priority given to this by the NAA and the MoH, the

drop-out rate from the prevention of vertical transmission program

among HIV-positive mothers is still very high, often because service

providers are highly and overtly critical of them and their behaviour.

In addition to highlighting the debilitating impact of HIV-related

stigma and discrimination, the high drop-out rate indicates poor

follow-up strategies and mechanisms for both mothers and infants.

One reason is that it is unclear who or what is responsible for follow-

up among those involved: health centre staff, the prevention of

vertical transmission secretariat, NCHADS, community health workers

or NGOs. It is hoped that such problems will be addressed by the

National Strategic Plan for Preventing Mother-to-Child Transmission

of HIV 2008-2015, which aims to further scale up services and achieve

the UNGASS goal of reducing the percentage of HIV-positive babies

born to HIV- positive women by 50 percent by 2010.

4. Provision of care and support for HIV-positive mothers, their infants,

partners and families (Prong 4) is faring better than others and can

be given an A-. The early focus of the national response to HIV/AIDS

was on treatment. Over the past two decades NCHADS has allocated

significant human, financial and technical resources toward this

goal. Most women in need of ART have access to it, but coverage to

infants born to mothers living with HIV remains limited due to lack

of follow-up.

8 A = highest availability, B = high availability, C = low availability, and D = lowest availability.

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challenges of the preVention of Vertical

transmission program in cambodia

• There has been a relatively low level of utilization of ANC services (30

to 50 percent). The majority of births (78 percent) occur at home or

outside medical facilities in which prevention of vertical transmission

services are available9. As a result, the vast majority of women of

childbearing age miss the opportunity to be tested for HIV. Among

the reasons for such low levels are lack of transportation; financial

barriers; social/cultural norms and practices; and lack of confidence or

trust in health care providers, especially those connected with

the government.

• There is little awareness about prevention of vertical transmission

interventions among the general population, including health care

workers. This is largely due to limited availability of information

about vertical transmission and low levels of education among women

in rural areas.

• Access to prevention of vertical transmission services is hindered by

poor integration with broader health care services. As of September

2008, there were 154 prevention of vertical transmission sites

nationwide. Only 50 of them are housed in health centres —where

most women in rural Cambodia go for ANC services—and the total

number of sites is just a fraction of the nearly 1,000 health centres

across the country.

• Many health centres have weak infrastructure in terms of qualified,

motivated and committed staff, particularly in regards to midwives.

This is due to a limited pool of health workers, low salaries and

incentives; inadequate medicine supplies, equipment and buildings;

and poor technical guidance, supervision and management systems.

Many health care personnel work for only a few hours each day at

health facilities; the rest of the day they may be at other jobs because

they need to supplement their income.

• Weak planning, forecasting, procurement, logistic and supply

management systems result in frequent stock-outs of prevention of

vertical transmission drugs, HIV test kits and ARV medicines.

• The National Technical Working Group for PMTCT (TWG-PMTCT) has

limited representation from the NGO and private sectors. This has

resulted in poor coordination and limited awareness about prevention

of vertical transmission among many NGOs that provide health-

related servaices.

9 National Strategic Plan for Preventing Mother-to-Child Transmission of HIV, 2008-2015.

“PMTCT is poor in

Cambodia: poor in terms

of quality, cooperation,

collaboration, coverage

of services and high

maternal mortality.”

Un agency representative

in cambodia

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Country Reports, Cambodia

A key overarching challenge is institutional. Most respondents said

that the scale-up of the prevention of vertical transmission program

is inhibited by weak collaboration and cooperation between two key

national health programs, NMCHC and NCHADS. The coordination of

joint activities at national and sub-national levels remains limited despite

a joint statement and set of standard operating procedures co-signed by

NMCHC and NCHADS and approved by the health minister.

The growing divide in influence and resources is cited as a main reason

for the lack of collaboration. Even though both NCHADS and NMCHC

are equal in authority, NCHADS has more capacity in terms of human,

technical and financial resources because HIV/AIDS spending has almost

tripled over the past decade, while spending on maternal and child health

has remained static. As one respondent observed, “There cannot be very

good collaboration between rich and poor....It is very difficult to convince

the rich to be coordinated with the poor.”

Efforts have been initiated recently to improve the situation by

developing better linkages between HIV-related health services and other

health services. One pilot project begun in four districts in April 2008

reportedly has shown good results with higher coverage of HIV testing

among pregnant women than the national average and improved follow-

up services for those testing positive10.

lessons learned from the preVention of Vertical

transmission program

Despite its many limitations, the prevention of vertical transmission

program has played a vital role in increasing pregnant women’s

utilization of antenatal care (ANC) and other services. Many respondents

said that prevention of vertical transmission services will contribute

significantly to a reduction in maternal and infant mortality and

thus boost progress toward reaching several of the UN’s Millennium

Development Goals (MDGs), notably goals 4, 5 and 6. Moreover, the

prevention of vertical transmission program has helped boost HIV

awareness among men, an increased number of whom are now directly

engaged in ANC services with their wives, partners and family members.

Many husbands of pregnant women who receive HIV tests are also

seeking tests.

Other lessons learned from the ongoing scale-up of prevention of

vertical transmission in Cambodia, as identified by country teams

and respondents:

• Greater integration of prevention of vertical transmission services

with maternal and child health services is needed to improve the

10 Funds from the Global Fund’s Round 7 grant are supporting this pilot project, called “Linked

Responses”, which is being implemented by NCHADS. Current plans are to scale up the project if the

country’s Round 9 application is approved.

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Country Reports, Cambodia

delivery of effective programs to prevent HIV infection in infants and

young children.

• Effective scale-up of the prevention of vertical transmission program

can only be achieved by providing more adequate infrastructure,

increased training and resources for staff, and more reliable supply

systems. It is difficult for public health systems characterized by low

motivation and weak infrastructure to provide ANC and ART services

to either women or infants.

• Most prevention of vertical transmission activities, including training

and supervision, are initiated and conducted at the central level in

Phnom Penh, Cambodia’s capital. Such excessive centralization limits

the technical capacity of management teams at the provincial and

operational district levels to adequately implement services at the

local level.

• A prevention of vertical transmission program is more likely to be

effective in the long term if it implement pilot projects before scaling

up national interventions. In Cambodia, the program was pilot-tested

in three provinces before being expanded nationwide.

• A prevention of vertical transmission program should include

partnerships with local policymakers, researchers, physicians,

communities, NGOs and the private sector to increase awareness

and support for project activities. For example, community norms,

ideas, and support for a particular program or activity can influence

a woman’s decision to test for HIV. Unfortunately, such partnerships

are far too few in number in Cambodia.

• The effective provision of rapid HIV testing, which is available at all

prevention of vertical transmission sites in Cambodia, requires strong

collaboration among ART, prevention of vertical transmission and

laboratory staff. However, such collaboration is often lacking at sites

in Cambodia, which means that some clients are not notified of their

rapid test results on the same day they take the test.

3. hiV testing: access and other issUes

A total of 212 VCT sites were operating in Cambodia as of December

2008; of those, 154 offered prevention of vertical transmission services.

Provider-initiated HIV testing and counselling (PITC) was implemented

in 2006 within various medical settings including prevention of vertical

transmission, STI and tuberculosis clinics. This has increased HIV testing

uptake and helped ensure appropriate referral to other health services.

PITC implementation has also been beneficial for the prevention of

vertical transmission program.

In 2008, according to government records, a total of 97,796 pregnant

women obtained ANC services at government ANC clinics that offer

prevention of vertical transmission services. Of those individuals, 67,973

(69.5 percent) were tested for HIV, and 15,529 (22.8 percent) of their

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Country Reports, Cambodia

husbands/partners were also tested. Of the 63,655 women who received

the results of their HIV test, 383 (0.6 percent) were HIV-positive and

subsequently referred to prevention of vertical transmission services;

similar referrals were also made for an additional 363 pregnant women

already known to be HIV-positive. More than 90 percent of these HIV-

positive pregnant women reportedly received some prevention of vertical

transmission prophylaxis. (It is important to note that the current VCT

operating procedure and database management system only requires the

classification of client by sex and not by pregnancy status.)

One major factor that prevents some women from accepting testing

is the need to seek their partner’s consent. If and when they do get

tested, however, they may face some obstacles to adequate service

provision. The overall quality of prevention of vertical transmission

services is improving, but significant problems remain. Often, for

example, prevention of vertical transmission specialists are able to devote

only a few minutes to pre-test counselling for each client because of

high demand and the fact that the specialists usually have additional

responsibilities at their health centres. Confidentiality of test results is

also not always guaranteed or ensured for women and their children.

According to several PLHIV respondents, some health care providers

criticize HIV-positive mothers for becoming pregnant. Health care

workers with insufficient training on prevention of vertical transmission

often persuade HIV-positive women to abort their babies by telling them

that they will die if they do not take that step. Given such pressure, it is

not surprising that some HIV-positive mothers choose not to deliver at

health care facilities.

4. infant feeding gUidelines and trends

Breast-feeding is considered normal in Cambodia and the National Policy

on Infant and Young Child Feeding Practices (from 2002) recommends

exclusive breast-feeding for up to six months after birth. The 2005

Cambodian Demographic and Health Survey reported that 60 percent of

children younger than six months were exclusively breast-fed and that

nearly half (46 percent) of mothers breast-feed their children until they

are at least 2 years old.

The infant feeding guidelines in the national policy on prevention of

vertical transmission (from 2005) focus primarily on informed decision-

making. They state that HIV-positive mothers should be provided with

as much information as possible about the risks and benefits of various

feeding options. Health care providers are urged to support mothers

who choose to breast-feed and they are directed to recommend formula

feeding only when replacement feeding is acceptable, feasible, affordable,

sustainable and safe (AFASS).

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Research findings indicate that such guidelines are not always followed

in practice, however, by all stakeholders involved. Many public-sector

and civil society personnel reportedly are biased in favour of the formula

feeding option. An NMCHC representative said that NGOs in particular

“interpret AFASS as simply asking HIV-positive mothers the question, ‘Do

you accept formula feeding?’ with the understanding that the answer will

always be yes”. As it stands now, nearly all (95 percent) of HIV-positive

mothers in Phnom Penh, the capital and largest city, formula feed their

babies up to six months after birth; the comparable rate in rural areas is

far lower, at 45 percent.

Some NGOs and government facilities provide formula free of charge, but

in most cases clients and their families must purchase it on their own.

As a result, many women have no option other than breast-feeding, even

when the child is older than six months.

Reports from across the country indicate that regardless of whether HIV-

positive mothers breast-feed, follow-up with assistance and support for

infant feeding practices is limited.

5. impact of Violence and stigma

HIV-related stigma, domestic violence and lack of male involvement

in antenatal care continue to discourage many women from accessing

prevention of vertical transmission services in Cambodia. A 30-year-

old participant of a focus group discussion at a health centre in Takeo

province said that pregnant women often do not want to disclose their

status to partners and families because they fear rejection, isolation and

being forced out of their homes.

More effective prevention of HIV transmission among women is also

hindered by cultural norms that leave them vulnerable to physical and

sexual violence, often at the hands of their husbands11. Two respondents

observed that such violence is often even greater (due to self-stigma) when

the male partner is HIV-positive.

Another issue affecting pregnant women in general is the high rate of

violence against women in Cambodia. According to one human rights

NGO, more than 1,000 cases of violence against women and children were

reported in 2008—a number that is almost certainly far lower than reality

given the fact that the majority of such instances are not reported or are

classified otherwise. At least one fifth of Cambodian women are thought

to experience domestic violence every year. Addressing this problem is

complicated by cultural and social norms that at the very least excuse

such abuse. Recent studies indicate that more than half of Cambodian

11 Such violence and abuse was documented extensively in a 2005 publication from GTZ, “Gender-based

violence and HIV/AIDS in Cambodia 2005”.

“I hope that PMTCT will

be scaled up for the good

health of mother and child.”

hiV-positive woman

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Country Reports, Cambodia

women justify a husband’s violence against his wife for one reason or

another, although young, urban, and educated women are less likely to

consider domestic violence to be acceptable in any circumstance.

6. assessing the work of global agencies

The prevention of vertical transmission program has received a high

level of attention and support from many donors over the years, including

bilateral agencies (such as DFID); UN agencies (including UNAIDS,

UNFPA and UNICEF); and multilateral entities (including the Global Fund

and WHO).

In 2007, the Cambodia PMTCT Program Joint Review was conducted

with the financial support of UNICEF, the Clinton Foundation and the

US Centers for Disease Control and Prevention (CDC). Technical advice

for this process was provided by international consultants from UNICEF,

WHO, CDC and the World Bank.

However, the disbursement of funds, particularly those provided

through Global Fund grants, has been slow, a situation that has caused

substantial delays in the expansion of services. Most of the donor money

is channelled to only one institution (NCHADS), thereby leaving only

a limited amount for the more appropriate institution, the National

Maternal and Child Health Centre (NMCHC).

recommentions

1. Integration of services: UNAIDS and the NAA should increase their

resource-mobilization efforts and donor agencies should provide

greater financial support for scale-up and integration of prevention of

vertical transmission services in all health care facilities.

2. Policies and guidelines: The MoH should revise guidelines to make the

private sector more inclusive in comprehensive service delivery

for prevention of vertical transmission. The new guidelines should

allow services to be provided directly by health care facilities in the

private sector, including all hospitals and clinics. The private sector

should also be permitted (and should even be encouraged) to submit

proposals to the Global Fund through the Country Coordinating

Mechanism.

3. Coordination and management: Civil society and private-sector

representation in the national technical working group for prevention

of vertical transmission (TWG-PMTCT) should be increased. This

would help improve coordination among NCHADS, NMCHC,

NAA, NGOs and the private sector and, ultimately, increase access

to adequate services. The role and responsibilities of different

representatives also should be made clear and specific in the TWG-

PMTCT’s terms of reference.

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Country Reports, Cambodia

4. Financial support for women: Pregnant women, particularly those from

poor and marginalized communities, should be given financial and

in-kind incentives by government agencies and/or donors to seek

out and complete all stages of ANC, VCT and other prevention of

vertical transmission services. Such incentives might include food

and nutritional support and stipends for transportation to and from

health care facilities.

5. Supply: Government agencies such as NCHADS, NMCH, and the

MoH’s Central Medical Store, which are responsible for procurement,

supply chain and logistics management systems in Cambodia,

should strengthen their efforts to ensure consistent and regular

availability of HIV test kits and ARVs for use in prevention of vertical

transmission services.

6. Information-sharing and awareness: NMCHC should develop and maintain

a website that provides a centralized source of information and

resources regarding prevention of vertical transmission, ANC and

infant feeding. The website can help raise awareness about prevention

of vertical transmission in general, especially among health care

workers, program managers and policymakers.

7. Quality of services: The MoH, the Ministry of Finance and/or donor

agencies should identify ways to increase salaries and incentives of

personnel providing prevention of vertical transmission services. Two

important goals would be to have health care facilities open 24 hours

a day, with at least one midwife present all the time.

8. Human rights: Prevention of vertical transmission training should be

provided to all health services providers and NGO implementers—

not just to prevention of vertical transmission personnel. Such

training would increase their understanding of prevention of vertical

transmission and key human rights issues related to HIV, including

confidentiality, non-discrimination and the importance of protecting

a women’s right to informed consent.

9. Community health systems: Policymakers with the national prevention

of vertical transmission program should increase linkages with all

health-oriented service providers at the community level, including

those operated by NGOs and the private sector as well as unaffiliated

traditional birth attendants and community health workers. A

full range of community members should also be involved in

program planning and implementation to help reduce stigma and

discrimination and to improve community awareness of HIV and

prevention of vertical transmission services beyond MCH settings.

10. Breast-feeding: HIV-positive mothers should receive appropriate

information and counselling regarding the risks and benefits of

various feeding options so they can make informed decisions. NMCHC

should disseminate the national policy for infant feeding in the HIV

context through its website, workshops and meetings to increase

understanding at all levels of prevention of vertical transmission

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Country Reports, Cambodia

services and partners, including NGOs. NMCHC and NCHADS should

establish a mechanism to follow up with HIV-exposed children to

monitor appropriate infant feeding practices and their impact, and

to offer appropriate counselling and advice to HIV-positive mothers

during all facility visits.

11. Male partner involvement: The two national programs (NCHADS and

NMCHC) should develop strategies to encourage male partners of

pregnant women to be tested for HIV and engage more fully in

prevention of vertical transmission services as part of a broader effort

to involve the entire family in HIV treatment and care. Such strategies

might include specifically urging male partners to accompany

pregnant women to at least one ANC visit, sending written invitations

to partners, and having community workers conduct home visits.

Outreach activities to reach men who are at high risk, such as IDUs,

male sex workers, and MSM, should be developed.

12. Counselling: ANC procedures should be reorganized to provide pre-test

information to groups of pregnant women (rather than individually).

A group pre-test session would help to reduce the burden on providers

and allow more time for the individual post-test counselling session.

Pre-test counselling should explicitly address stigmatization of HIV-

positive women and the potential for negative reactions to lead

to violence. Such counselling should also provide tips to pregnant

women on ways to persuade their partners to be tested for HIV,

engage more fully in ANC activities, and consider behaviour-change

counselling if appropriate.

13. Peer education: All pregnant women should be encouraged to become

peer educators. Requests could be made by health care providers

during counselling sessions.

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Moldova

General coordination: Liudmila Untura, Childhood for Everyone

Interviews: Igor Chilcevchii, League of PLWHA in Moldova Republic; Igor

Moiseev, Credinta; Natali Mordari, Childhood for Everyone; Vladlena Semeniuc,

League of PLWHA in Moldova Republic

Report author: Liudmila Untura, Childhood for Everyone

research process and methodology

research for this country report was conducted from november 2008 through

mid-January 2009. it consisted of 14 interviews with government representatives,

multilateral agencies, service providers, activists and women living with hiV.

respondents included staff from the moh, including the agency’s healthcare

monitoring and management department and scientific research institute on

mother and child health protection; the ministry of social welfare, family and child;

the human rights institute in moldova; ngos engaged in prevention of vertical

transmission service delivery; and global agencies (including the global fund, Unaids,

Unicef and who). also interviewed were the coordinator of the national prevention

of vertical transmission program, the head of a local health facility unit providing care

for hiV-positive women, and two gynaecologists from local health care facilities.

researchers also conducted four focus groups with a total of 57 participants. three

of the focus groups comprised only hiV-positive women (a total of 42), some of whom

were pregnant at the time. the participants came from both urban and rural settings

across moldova, including belti, glodeani, falesti, briceani and ribnita in the north;

comrat and chadir-lunga in the south; telenesti, nisporeni and traganesti in the west;

and benderi and kausani in the east. the fourth focus group consisted of 15 women

from the general population—i.e., women who were hiV-negative or otherwise did not

know their hiV status.

1. backgroUnd information

Responding to the HIV/AIDS epidemic has been a priority of the

Moldovan government in recent years. An interim evaluation of the

national HIV/AIDS program 2006-2010 and national reports show that

the situation has improved over the past few years. For example, ART is

available free of charge to all who need it; all health services are available

for free for pregnant HIV-infected women; and all maternity hospitals

offer rapid HIV testing services and ARV prophylaxis for both pregnant

women and newborns.

However, the development and sustainability of effective responses to

HIV are threatened by lack of funding and resource-limited health care

and welfare systems. One notable trend has been a growing feminization

of the epidemic, a situation that has exposed significant limitations in

prevention of vertical transmission service delivery.

key points

1. a majority of hiV-infected women

interviewed for the report said that

the quality of pre- and post-testing

counselling is very poor.

2. knowledge about prevention of

vertical transmission in general

was relatively limited among focus

group participants, including the

importance of adherence to art

regimens and awareness of the risks

of mixed feeding.

3. the barriers to deciding on

the best infant feeding option for

many mothers include stigma and

discrimination; family pressure;

and limited financial resources to

purchase replacement feeding beyond

the first year during which formula is

provided free.

4. a recent survey of families with

plwha found that half had faced hiV-

related discrimination at least once,

mostly in health care facilities.

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Country Reports, Moldova

epidemiological and hiV treatment sitUation

According to the National AIDS Centre, a total of 4,926 HIV cases had

been officially registered in Moldova by the end of 2008. The annual

number of new cases has increased in recent years, from 618 in 2006 to

795 in 2008.

The epidemic has long been concentrated among IDUs, but their

share of infections has decreased over the past several years while the

percentage of infections attributed to heterosexual sex has increased. The

majority—62 percent—of new cases occur among individuals aged 20 to

34. In 2008, women comprised about 44 percent of all new registered

HIV cases.

ART is available free of charge for all who have need for it in Moldova,

and both first- and second-line regimens are available. As of the beginning

of 2009, a total of 585 people were on ART, including 29 children. A total

of 102 HIV-positive pregnant women received ARV prophylaxis in 2008.

Four cases of vertical transmission were recorded that year.

2. statUs of serVice deliVery among

and for women

Policies and guidelines for prevention of vertical transmission services

are defined in the government’s national HIV program. They include

the following:

• Primary prevention of HIV infection among women and girls. Numerous

HIV awareness campaigns have been conducted in Moldova. Most

have been targeted at young people, IDUs, MSM and other key at-risk

populations, but the government in collaboration with other partners

has also created a special “Guidelines on PMTCT Issues”. These

guidelines, which discuss key messages and priorities in regards to

prevention of vertical transmission, have been distributed to health

care facilities across the country.

• Prevention of unintended pregnancies among HIV-positive women. When

women access VCT services, they receive pre- and post-test counselling

on a range of different HIV-related issues, including prevention of

vertical transmission and various risks associated with becoming

pregnant if HIV-infected. Counselling guidelines emphasize the

importance of using condoms to avoid unintended pregnancies as well

as reduce HIV transmission risk; also, they provide guidance on how

HIV-positive women might manage intended pregnancies.

• Prevention of HIV transmission from mother-to-child. Almost all women

receive HIV testing (including counselling) during pregnancy. Free

ARV prophylaxis is available to all HIV-positive women in antepartum

and postpartum periods as well as during delivery. Newborn infants

are placed immediately under medical observation, which includes

HIV testing (assuming parental consent) as soon as accurate results

are likely to be available. National protocols state that HIV-positive

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Country Reports, Moldova

women should breast-feed their infants exclusively during the first

six months only if formula is not available or if the woman does not

want to use formula for a personal reason. The protocols also strongly

recommend that mothers switch from breast-feeding to formula six

months after birth if formula is available. Women are informed about

the risks of breast-feeding and mixed-feeding, and infant formula is

offered and made available free of charge for one year for all children

born to HIV-positive mothers.

According to the most recent UNGASS report (2008), nearly 85 percent

of pregnant HIV-positive women received ARV prophylaxis in 2007.

Two different three-drug combinations are currently offered and

available12. ARV prophylaxis for prevention of vertical transmission

can be provided to women in only two cities in the country, Chisinau

and Tiraspol. Newborns, however, can get ARVs at maternity hospitals

across the country.

proVision of care and sUpport for hiV-positiVe

mothers, their infants, partners and families

This component of prevention of vertical transmission is provided partly

by NGOs under the patronage of “The League of PLWH in Moldova

Republic” (also known as “League of PLWH”). Services provided include

peer-to-peer support, group counselling and telephone counselling. Public

health facilities, meanwhile, provide only clinical observation of HIV-

positive women and their children. Medical care for all pregnant women

is provided free of charge in the public sector.

The government also provides financial support (“hardship allowance”)

on general grounds to those in need. It does not, however, automatically

provide psychological and social support to HIV-positive women and their

children, a service that would be especially useful in helping them adhere

to treatment regimens.

barriers to comprehensiVe serVice deliVery and

lessons learned

For the most part, the government—with crucial financial support from

the Global Fund—has done a decent job in developing and implementing

prevention of vertical transmission services that reach the majority

of women in need. However, uptake of these services has lagged for a

number of reasons. Existing support systems fail to motivate patients to

ask for the medical services and assistance they have a right to access.

Residents of rural areas encounter tremendous difficulties in obtaining

essential medical care in a timely and convenient manner. Chronic

shortfalls in human resources and governmental budget financing for

health care in general also negatively affect service delivery.

12 The three-drug combinations available include i) nevirapine+AZT+3TC and ii) Kaletra (lopinavir/

ritonavir)+AZT+3TC.

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Country Reports, Moldova

Developments have also been relatively limited from a social perspective.

Gender-oriented approaches have yet to be integrated into all parts of the

national HIV program. Patriarchal traditions and stereotypes continue

to influence expectations regarding women’s role in society, such as the

assumption that they have primary responsibility for child-rearing and

family relations.

feedback from focUs groUps

The following challenges in regard to prevention of vertical transmission

service delivery in Moldova stem from information and observations

obtained during focus group discussions:

• The overwhelming majority of focus group participants had

incomplete or distorted knowledge about HIV transmission modes

and risks. The lack of awareness was most significant among

participants from the “general” population (i.e., not HIV-positive).

Many of them thought HIV could be transmitted through casual

contact and bloodsucking insects.

Even HIV-positive focus group participants, however, knew relatively

little about prevention of vertical transmission in general. The

importance of adherence to ART regimens was poorly understood, and

even pregnant HIV-positive women had limited knowledge of the risks

of mixed feeding.

A majority of HIV-positive women from rural areas said they received

adequate information about ARV prophylaxis only after visiting the

facility in Chisinau where specialized care is provided for pregnant

women living with HIV. Most were unaware that support and services

in regards to prevention of unintended pregnancies were available.

• A majority of HIV-positive women said that the quality of pre- and

post-testing counselling is very poor. In some cases this appears to

have had disastrous consequences. One woman said she did not

receive any counselling at all, was not aware that she had been tested

for HIV by health care providers (most likely her gynaecologist), and

was not told she was HIV-positive until after she gave birth. Her child

was later diagnosed with HIV and is now on ART.

• A majority of focus group participants wished that the quality and

scope of available medical services could be improved. Most said,

for example, that they thought follow-up examinations should be

available free of charge; they also wanted free dental health service.

• All focus group participants would like to receive extra nutritional

support for their children and themselves as well as extra hardship

allowance from the government on the grounds of their HIV status.

“The director of the local

kindergarten asked me to

remove my children—who

happen to be HIV-negative,

by the way—and never

bring them back. She is

not a bad person, but

parents of other children

demanded that my kids

be removed. Our town

is very small. Everybody

knows everything about

each other. Rumours about

my diagnosis have spread

all over the town... I don’t

understand why the nurse

from our health care

district told my neighbours

about my status.”

svetlana, 28, an hiV-positive

woman who participated in

a focus group discussion in

beltsy in december 2008

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Country Reports, Moldova

lessons learned

The following are among the lessons learned in regards to prevention

of vertical transmission service delivery during interviews and focus

group discussions:

• Greater collaboration should be initiated among all stakeholders

involved in HIV prevention and treatment efforts in Moldova,

including the national MoH and its relevant departments, local

authorities, civil society, and multilateral and bilateral agencies

and donors.

• Prevention activities must be based on facts that accurately reflect

the situation. It is therefore necessary to create and develop a

comprehensive database in which HIV data and information are up-to-

date and widely available.

• Governmental structures should work more closely with experienced

and trusted NGOs, such as organizations of HIV-positive individuals,

to develop and roll out improved psychosocial support mechanisms

that are beneficial to HIV-positive women and their children.

• Some women (HIV-positive or not) do not have reliable access to

adequate and consistent health care even if they are pregnant. The

main obstacle has been that Moldova is a relatively poor country

and many insurance schemes are unable to provide comprehensive

coverage. The government has, however, sought to fill the gap by

guaranteeing free health care to pregnant women starting at the 14th

week of pregnancy.

3. hiV testing: access and other issUes

A total of 32 VCT sites are currently operating in the country, and

the government plans to open at least 20 more by the end of 2010.

Respondents indicated that the sites meet international standards and

personnel are well-trained. In addition to HIV testing (ELISA and Western

Blot, depending on location), the sites offer tests for hepatitis B and C.

(Rapid testing is currently not available at VCT sites, but the government

plans to provide them at such facilities by the end of 2010. Currently,

rapid tests are only available at maternity hospitals.) PCR tests are

available for children born to HIV-positive mothers, as per new WHO

guidelines adapted for Moldova. All tests are available free of charge.

As per a national law, HIV tests are mandatory for pregnant women who

utilize health care facilities in Moldova—although women who refuse

to be tested are not prosecuted. Women who register at facilities when

pregnant are normally tested twice, once when they first register and

again during the third trimester. According to officials at the National

AIDS Centre, about 97 percent of pregnant women do in fact get

registered and, thus, are tested for HIV during pregnancy (about 30,000

women per year in total). Taking rapid testing into account (which is

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Country Reports, Moldova

currently available only in maternity hospitals), this number is very close

to 100 percent, which makes prevention of vertical transmission planning

and implementation easier in Moldova.

All aspects of HIV testing, including results, are confidential as per a

2007 law. Even so, HIV-positive people do not always have control over

information about their status. For example, the 2007 law also mandates

that information about patients’ HIV status be sent to his or her

specific health care service provider, who has ultimate responsibility for

treatment. The law also permits health care providers to i) inform parents

of minors without the young person’s consent, and ii) divulge HIV status

information to the spouse or partner of an HIV-positive person if a “risk”

of HIV transmission is perceived by the provider.

The law does, however, forbid medical personnel from discussing

individuals’ HIV status outside such specific instances. Several HIV-

positive respondents said that this provision is commonly violated at

different points in the system. One focus group participant said the

following: “When I was at the hospital for TB treatment, all the staff

members and even other patients knew about my HIV diagnosis.”

4. infant feeding gUidelines and trends

National protocols state that HIV-positive women should breast-feed their

infants exclusively during the first six months only if formula is not

available or if the woman does not want to use formula for a personal

reason. The protocols also strongly recommend that mothers switch from

breast-feeding to formula six months after birth if formula is available.

Women are informed about the risks of breast-feeding and mixed feeding,

and infant formula is offered and made available free of charge for one

year for all children born to HIV-positive mothers.

Global Fund support helps ensure that formula is available free of charge

for all HIV-positive mothers who want or need to use it during the first

year of a child’s life. Counselling on complementary feeding is available

during antepartum and postpartum periods in health care facilities,

family planning centres and reproductive health centres. The counselling

covers such topics as the preparation of infant formula, dosage and

guided practice. Counselling and support are also provided by family

doctors and paediatricians, who often visit mothers and their infants

at home.

Special medical support is also available for children born to HIV-

positive mothers. Under existing policies, they are guaranteed medical

check-ups by the specialist at the facility in Chisinau at least once every

three months. The policies also strongly recommend that the children

be examined regularly by other specialists if necessary, including a

neurologist and orthopaedist. Caseworkers visit children born to HIV-

positive mothers at least once every 10 days during the first three months

“I feel sorry for HIV-

infected girls, but I’m

an [infectious-disease

specialist] and I don’t

have time to talk to

them about pregnancy.

I’m not a psychologist

who can help dry

their tears and tell them

how to live now...

but someone needs to

do that!”

infectious-disease specialist

at a chisinau clinic,

interviewed in december 2008

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Country Reports, Moldova

after birth, and then once a month after the third month. All children

regardless of type of feeding are tested for HIV at 2, 4 and 18 months.

An MoH executive order (from June 2007) states that all children born

to HIV-positive mothers should be provided with formula for the first

year of their life. Medical personnel are trained to provide counselling on

infant feeding. In reality, though, formula feeding is not always AFASS

for HIV-positive mothers in Moldova, a situation that prompts some to

choose not to follow the national policies. According to some focus group

participants and beneficiaries of NGO services, many mothers continue

breast-feeding after six months for various reasons, including financial

hardship. (For example, some women—especially those who live in rural

areas far from facilities—are unable to afford the cost of transportation

on a regular basis to obtain formula, even though it is provided free

of charge.)

Additional barriers to AFASS replacement feeding for many mothers

include i) stigma and discrimination based on that feeding method, ii)

violence against women, iii) family pressure against replacement feeding;

iv) inadequate social support on the part of the government; and v) lack of

financial ability to acquire extra formula and nutritious food, especially

after the first year of life (when the formula is not provided for free any

more). Such obstacles often reduce the quality of children’s lives.

The government recognizes such factors and obstacles and has taken

steps to address them. In addition to targeted efforts to reduce poverty

across Moldova, it has initiated an effort to increase women’s social status

and reduce discrimination against them. For example, governmental

commissions have been created at the national level to help identify and

coordinate activities of the Department of Equal Possibilities and Family

Policy in the Ministry of Social Protection, Family and Child. Funds are to

be made available through the Global Fund Round 8 project, which was

approved in November 2008, to seek improvement in the quality of lives

of PLWHA. Specific plans in the successful Global Fund application call

for reducing HIV-related stigma and discrimination and providing support

(including nutrition and clothes) to children infected with and affected

by HIV.

5. impact of Violence and stigma

HIV-related stigma and discrimination remain extensive in Moldova

despite the government’s commitment to respond appropriately to the

epidemic. In practice there are few repercussions for discriminatory

actions and no compensation is provided even for those who can prove

they experienced stigma and discrimination.

The general feedback from respondents is that informational campaigns

aimed at reducing HIV-related stigma have not been effective. Such

observations reinforce the findings of a survey about and among people

“My husband and I

decided that this baby

should be born. But

every time I go to my

gynaecologist I feel

like I mount the scaffold.

She talks to me like I

am a criminal.”

snezhana, 32 years old, an

hiV-positive participant

in a focus group held in

chisinau in november 2008

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Country Reports, Moldova

affected by HIV that was conducted by the National Centre of Public

Health Management in 2008. The survey consisted of interviews with

576 families of PLWHA between the ages of 18 and 50. More than three

quarters (76.5 percent) of survey respondents said they found it difficult

to talk about their HIV status, and the majority of those said stigma was

the main reason. Perhaps the most shocking result was the high level of

inappropriate and illegal behaviour on the part of health care providers.

Half of those surveyed said they had faced HIV-related discrimination at

least once, mostly in health care facilities. Forty-four percent of study

participants said that confidentiality had been breached when an HIV

diagnosis was inappropriately revealed; in nearly half of those cases,

doctors were identified as the source of disclosure.

Violence against women in Moldova is relatively common, a situation that

further undermines the ability and inclination of HIV-positive women

to disclose their status and seek out appropriate treatment and care.

For example, according to an article published in 2007 in Entre Nous, the

European Magazine for Sexual and Reproductive Health, about one third of all

Moldovan women under 30 years of age had been the victim of violence

after turning 15. About the same percentage of women who had ever

been married said that they had experienced psychological or sexual

violence from their present or ex-husband.

6. assessing the work of global agencies

Global agencies have long been involved in Moldova’s HIV/AIDS response.

Their involvement became especially significant in 1996, with the

establishment of a special UN coordinating body to assist the government

in addressing the epidemic. In addition to key government agencies, the

body includes representatives from the Global Fund, UNAIDS, UNDP,

UNFPA, UNICEF, WHO and the World Bank. The body helps develop

and implement effective strategies to fight the epidemic and, among

other things, advocates for multisectoral approaches in regards to the

implementation of activities related to HIV prevention and treatment,

including HIV-positive women and children born to HIV-positive mothers.

Most government officials and civil society advocates agree that the

overall impact of global agencies on HIV-related treatment, care and

support, including in regards to prevention of vertical transmission, has

been positive. Several agencies deserve special recognition for the type

and scope of support they have provided. The Global Fund has played

a vital role by approving more than $25 million in grants to date for

Moldova’s HIV/AIDS programs, including those related to prevention of

vertical transmission. UNICEF, meanwhile, has helped manage prevention

of vertical transmission services; its financial support helped renovate a

special facility for HIV-positive women and their children and underwrote

a survey on the impact of HIV on children.

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Country Reports, Moldova

It is worth noting, however, that the majority of individuals interviewed

for this study had no knowledge of the global agencies’ involvement.

Several government officials were unable to describe or explain the

agencies’ activities, and nearly all focus group participants had never

heard anything about the organizations or their engagement in the HIV/

AIDS response in Moldova.

7. recommendations

Stakeholders should take the following actions to improve prevention of

vertical transmission services for women and children in Moldova:

national goVernment:

• Increase financing of prevention of vertical transmission programs at

all levels through the national budget.

• Strengthen interaction between civil society and the government.

One step would be to increase the number of PLWHA in the Global

Fund CCM to three and ensure gender balance.

local and national aUthorities:

• Develop and roll out an informational campaign designed to increase

awareness of HIV and STIs, including effective prevention strategies.

This campaign should be undertaken in collaboration with NGOs and

should reach all administrative territories and rural areas and should

emphasize the importance and availability of VCT services.

ministry of health:

• Create a dedicated unit within the MoH to focus on HIV/AIDS. This

unit would be responsible for coordinating all HIV-related care,

treatment support services at all levels across the country. The

current system is fragmented, with different entities within the

general public health system having responsibility for different

elements of HIV service delivery. For example, prevention of vertical

transmission services should be integrated more fully into an overall

spectrum of HIV-related care.

• Develop and implement a program to monitor and follow patients

throughout all stages of HIV care, from the moment of diagnosis to

ART provision to managing OIs and side effects.

• Develop and implement a program improving access to medical

services not related to ARVs and reproductive health for women and

children. This would mean, for example, that HIV-positive women

could receive free medical care for any and all conditions, regardless

of whether they have insurance.

• Hire an HIV paediatrician to work at the special hospital unit for

HIV-positive children. Currently children are treated by doctors

specializing in care for adults.

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Country Reports, Moldova

• Ensure that VCT services for HIV are available in all health care

centres and family planning clinics in the country.

• Develop and publish guidelines that expand awareness of VCT

services.

• Create a national centre for HIV/AIDS specialists’ education at which

prevention of vertical transmission specialists are trained. Eligibility

should extend to both governmental and NGO employees.

• Develop the program that helps motivate women to seek out and

request prevention of vertical transmission services and medical care.

ministry of edUcation:

• Develop and implement a dedicated program to provide key health

and sexuality information in educational institutions. This program

should include comprehensive information about all aspects of HIV

and prevention of vertical transmission. Similar programs could be

established to reach young people outside of school environments,

including outreach and training on peer-to-peer education. NGOs

working with and for PLWHA should be included in all of these

efforts because they have significant experience.

• Develop and distribute HIV and prevention of vertical transmission

education materials for pupils and students, teachers and parents.

ministry of social protection, family and child:

• Develop and implement a program that would ensure social

protection of HIV-positive women and children. More specifically,

this would include financial support for those utilizing prevention

of vertical transmission services. Funds could be used to reimburse

women for transportation costs to and from clinics and to purchase

nutritious food for themselves and their children, for example.

Another priority would be to provide special welfare payments for

HIV-positive children so their caregivers can better support them.

ministry of JUstice:

• Revise laws and by-laws on HIV/AIDS in order to bring them to

conformity with international standards on protection of rights of

HIV-positive individuals. A key priority would be to revise the 2007

law on confidentiality so that individuals’ HIV status cannot be

divulged without their informed consent.

media:

• Create a series of advertisements for TV, radio and newspapers that

focus on reducing HIV-related stigma and discrimination against

women.

• Initiate a wide-ranging campaign to raise the level of awareness about

prevention of vertical transmission programs and services.

45

itpc, missing the target 7 | may 2009

Morocco

By Othoman Mellouk, Association de Lutte Contre le SIDA Marrakech, and

Nadia Rafif, CSAT13 regional coordinator for MENA14 region

research process and methodology

research for this report was conducted in two phases. the first phase (november and

december 2008) consisted of collecting and reviewing recent documents and reports

produced by government agencies and ngos. the second phase, in January 2009,

included interviews with a total of 11 stakeholders: representatives from Unaids, the

national aids program, the global fund management unit, and civil society groups

(including those focusing specifically on hiV and human rights); health-sector workers

(including paediatricians, infectious-diseases specialists, and social workers); and

consultants who have worked on prevention of vertical transmission issues for the

moh, Un agencies and civil society organizations. a focus group with five hiV-positive

mothers was organized in marrakech in January 2009.

1. backgroUnd information

An estimated 22,000 Moroccans were HIV-positive in 2008, which

corresponds to a relatively low prevalence of just 0.1 percent. However,

epidemiological data show signs of emerging concentrated epidemics

among specific populations including female sex workers and IDUs.

HIV is also becoming more common among women in general. In 2008,

they comprised 38 percent of all recorded AIDS cases15, up from 28

percent in 1995 and 19 percent in 1990. Marriage is no barrier to HIV

infection: according to official sources, three quarters of women living

with AIDS are currently married, divorced or widowed. Studies on STIs16

indicate that it is mostly husbands’ sexual behaviour that put Moroccan

women and, subsequently, their infants at risk of HIV infection. Vertical

transmission is responsible for about 3 percent of reported AIDS

cases. Local and global demographic and epidemiological data indicate

therefore that some 200 Moroccan infants contract HIV through vertical

transmission each year.

Systems for care, treatment and support for people living with HIV are

relatively well advanced, with antiretroviral drugs and treatment now

available free of charge. So-called centres of excellence and referral

centres have been established, and they are adequately trained and

equipped to treat HIV. Since 1990 these centres have provided treatment

key points

1. to date, no brochures, posters or

information booklets specifically

discussing prevention of vertical

transmission have been prepared by

either the ministry of health or any

ngos, and no ngos are involved in

programs promoting or offering Vct

to women during pregnancy.

2. access to antenatal services

remains insufficient: just 68 percent

of moroccan women have access to

at least one antenatal exam during

pregnancy, and only 63 percent of

births are assisted by healthcare

professionals.

3. breast-feeding by hiV-positive

mothers is contraindicated by the

ministry of health, however, more

than 40 percent of rural-dwellers do

not have access to safe drinking water

sources, and formula is available free

of charge in only three cities.

4. a lack of coordination among

international agencies working

in morocco limits their overall

effectiveness. currently, for example,

both Unfpa and Unifem are focusing

on improving maternal and child

health and promoting reproductive

health for women and girls, but are

not fully coordinated.

13 Civil Society Action Team

14 Middle East and North Africa

15 The MoH provides data only on recorded AIDS cases, not cases of HIV infection. The ministry defines

‘AIDS’ as per standard WHO guidelines.

16 Ryan CA, Zidouh A, Manart L et al., “Reproductive tract infections in primary health care, family

planning and dermatovenereology clinics: Implications for syndromic management in Arab Muslim

women.” January 1998

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itpc, missing the target 7 | may 2009

Country Reports, Morocco

for HIV-positive pregnant women to prevent vertical transmission. Prior

to ARVs becoming widely available and free of charge to all in need, in

2003, treatment for pregnant women consisted first of zidovudine (AZT)

monotherapy and then of dual therapy (AZT+3TC). In 1998,

triple-combination therapy became available to HIV-positive pregnant

women in need.

In terms of identifying PLWHA, over the past decade Morocco has

undertaken extensive efforts to reach high-risk individuals with HIV/AIDS

information, education and VCT services. Those efforts have not been

successful in regards to pregnant women, however. According to the most

recent UNGASS report, only 7.5 percent of HIV-positive pregnant women

had access to prevention of vertical transmission services in 2007. In

September 2008, there were 156 children in Morocco (0 to 14 years of age)

followed in reference services for HIV infection. In 80 percent of cases,

the HIV status of one or both of the parents was revealed only after the

child’s status was confirmed17. Such poor performance highlights the fact

that prevention of vertical transmission remains a major weakness of the

National AIDS Program.

2. statUs of serVice deliVery among

and for women

Policymakers recognize the shortcomings in availability of prevention

of vertical transmission services and are trying to address the situation.

With the support of UNAIDS and UNICEF, the MoH since 2006 has

sought to assess vertical transmission in the country and develop

recommendations for improved services. As a result, prevention of

vertical transmission is one of the innovations of the new National AIDS

Strategic Plan 2007-2011, and a pilot program has been initiated recently

in the cities of Agadir, Marrakech and Casablanca18. The results of this

pilot program will help determine whether, and how, prevention of

vertical transmission services will be expanded throughout the country.

The current prevention of vertical transmission strategy is much more

limited in that it focuses primarily on services for women already known

to be HIV-positive.

The MoH’s pilot program was preceded by a much smaller one launched

in 2006, in the city of Rabat. That pilot study, initiated by the University

Hospital Ibn Sina and supported by the French quasi-governmental

organization ESTHER19, was the first program in Morocco offering

“comprehensive” prevention of vertical transmission services to pregnant

17 Évaluation rapide de la situation des enfants infectés ou affectés par le VIH/SIDA au Maroc, Marc Eric

Gruenais, 2009 (Moh, UNAIDS, IRD, Soleil)

18 The program started in September 2008. Of the total of 916 pregnant women tested through

December 2008, just two were diagnosed as HIV-positive. As of March 2009, it was unclear when the pilot

program would end or when results, preliminary or otherwise, would be made available.

19 Ensemble pour une solidarité thérapeutique en réseau.

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itpc, missing the target 7 | may 2009

Country Reports, Morocco

women. From October 2006 to June 2008, a total of 1,527 pregnant

women enrolled in the program. Of them, five tested positive for HIV and

received ARV prophylaxis. All five babies are HIV-negative.

To date, with the exception of the ESTHER-supported pilot study in Rabat

and the pilot program recently launched by the MoH, there are no other

programs offering a comprehensive package of prevention of vertical

transmission for pregnant women in the country.

primary preVention among women and girls

The MoH and various NGOs have taken the lead in raising general

awareness about HIV through a growing number of HIV/AIDS education

campaigns in recent years. These campaigns have taken several forms,

including media campaigns and prevention programs in schools and at

work places.

Campaigns specifically targeting women have been initiated. Some

NGOs, such as ALCS20, have built alliances with women’s organizations in

order to provide information and testing services to their beneficiaries.

AMSED21, a national development organization, works with a large

network of community-based organizations (especially in rural areas)

and has offered information about HIV in its programs. None of these

interventions provides detailed information about prevention of vertical

transmission, however; in most cases, the focus is on sexual transmission

and condom use, with vertical transmission of HIV discussed only

superficially22. To date, no brochures, posters or information booklets

specifically discussing vertical transmission have been prepared by either

the MoH or any NGOs. Moreover, no NGOs are involved in programs

promoting or offering VCT to women during pregnancy.

preVention of Unintended pregnancies among hiV-

positiVe women

There is a lack of data concerning reproductive choice and HIV in

Morocco, with the exception of a small study undertaken in Casablanca

in 199923. According to one respondent24, all HIV-positive women followed

in specialized care facilities that provide HIV treatment and care (two

centres of excellence and seven referral centres) receive adequate

20 Association de Lutte Contre le SIDA (www.alcsmaroc.ma).

21 Association Marocaine de Solidarité et de Développement.

22 Researchers for this report analyzed materials (brochures, posters, PowerPoint presentations,

audiovisuals, etc.) used by NGOs working with women. None of these focus on all components of

prevention of vertical transmission.

23 Chakib A, Laghzaoui Boukaidi M, Najib J et al. Grossesse et SIDA. A Propos de 9 Cas. La Tunisie

Médicale, Vol. 79, N. 10 2001 ; 530-535. The study found that two of the nine HIV-positive pregnant

women treated at the Maternity Service of the Teaching Hospital Ibn-Rushd from 1990 through 1999 said

their pregnancies had not been planned. However, all women surveyed who knew their HIV status before

pregnancy said they decided themselves to have babies after consulting with their doctor.

24 Dr. Hakima Himmich, president of ALCS (Association de Lutte Contre le SIDA) and head of the

infectious disease department at Casablanca’s University Hospital Ibn Rochd.

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Country Reports, Morocco

information about family planning from medical personnel and have

access to contraceptive information and materials. (All HIV-positive

women respondents for this case study confirmed having received

such information.)

Abortion is illegal in Morocco, but HIV/AIDS is an indication for the

therapeutic interruption of pregnancy if the woman desires it. This

interruption is possible only after the mother is provided a thorough

explanation as to the HIV transmission risks and the potential fetal

toxicity of ARVs. After receiving such information, she can decide

whether she wishes to interrupt her pregnancy or carry to term. Of the

23 pregnant HIV-positive women followed in the Casablanca centre of

excellence in 2008, four chose to have an abortion.

preVention of hiV transmission from mother-to-child

Treatment and care of HIV infection in Morocco is provided at two centres

of excellence and seven referral centres. ART and key diagnostic tests are

provided free of charge to all in need, including pregnant women.

HIV/AIDS treatment and care protocols have recently been revised to

meet WHO recommendations. The guidelines stipulate that all HIV-

positive pregnant women be assessed upon first presentation at a

centre to determine whether they need ART and other therapies such

as cotrimoxazole prophylaxis. The usual ART regimen provided is

AZT+3TC+Kaletra (lopinavir/ritonavir). That combination regimen is

available immediately, if deemed necessary, or beginning at the 28th

week of gestation if it is intended to serve as prophylaxis. The treatment

protocols also specify when other ARVs may be more appropriate, such

as when just one dose of nevirapine is given during birth to help reduce

transmission risk to the newborn.

All newborn infants receive AZT within eight hours after birth and

remain on treatment for four weeks. When there is high risk of vertical

transmission (when women have high viral load), a single dose of

nevirapine is given to the newborn within 72 hours of birth as well.

HIV-positive pregnant women are strongly encouraged to give birth in

one of the nine specialized centres in the country. However, some women

do not follow this advice and choose to deliver elsewhere, usually at

their local maternity clinic, because of the stigma associated with the

specialized centres.

“I fell sick after the birth

of my son. My child had

TB. The doctor ended up

advising me to have an

HIV test. It was positive...

During my pregnancy I

was followed in a clinic,

but I never heard about

the possibility of taking an

HIV test. I vaccinated my

child and breast-fed him...

he died at nine months.

Today, I feel guilty.”

35-year-old hiV-positive woman

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barriers to comprehensiVe serVice deliVery and

lessons learned

• For many years, different stakeholders were sceptical, mainly because

of the very low HIV prevalence in Morocco, as to the cost effectiveness

of a dedicated prevention of vertical transmission program. This

points to a lack of documented best practices from low-prevalence

countries regarding this issue. The strategy ultimately adopted was to

treat known HIV-positive women and to continue raising awareness

(including the promotion of VCT) among the general public. At the

same time, several discussions and debates took place around the

country to define the most appropriate future strategy to promote

prevention of vertical transmission. This resulted in the MoH-

organized pilot program now in place.

• For the time being, it is considered neither practical nor reasonable

from a cost point of view to recommend that all pregnant women

in the country be tested for HIV. Previous STI studies indicate that

it is difficult to identify women at risk of HIV infection in Morocco

because it is the sexual behaviour of their husbands that often puts

those women at risk. However, efforts have been made to determine

the types of behaviours and circumstances that pose a risk of HIV

infection for pregnant women in Morocco. Key factors include a

history of multiple sexual partners or professional sex work, multiple

diagnoses of STIs, and having male partners (including husbands) who

work away from home for extended periods of time.

• Although progress has been made during the last decade to reduce

gender inequalities, 38 percent of Moroccan women are illiterate

and therefore cannot obtain information about HIV from brochures,

posters and the written media.

• Access to antenatal services remains insufficient. Just 68 percent of

Moroccan women have access to at least one antenatal exam during

pregnancy, and only 63 percent of births are assisted by health care

professionals.

• Women seem to bear the burden of prevention of vertical

transmission and the consequences of a possible positive HIV test by

themselves. Husbands are rarely if ever involved. For example, they

hardly ever accompany their wives to antenatal consultations and

have limited awareness of anything related to vertical transmission.

• There are relatively few sites in the country that offer dedicated

HIV-related services, notably prevention of vertical transmission, to

pregnant women. (At the moment, in fact, there are only four: the

sites established in 2008 as part of the MoH’s pilot program.) The

most convenient option for the majority of pregnant women who

wish to be tested is to use a VCT centre run by an NGO. However, they

rarely utilize that option because they fear being identified as perhaps

having HIV.

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3. hiV testing: access and other issUes

hiV testing policies and procedUres

Morocco has a good national policy on HIV testing under a legal

framework contained in an MoH decree from 198925. Testing is voluntary,

anonymous (except diagnostic testing26) and free of charge. Informed

consent is required. Only trained physicians are permitted to give HIV

tests. Recently, though, with the launch of the prevention of vertical

transmission pilot program, nurses are authorised to provide pre-test

counselling—but only doctors are allowed to give patients their test

results, whether negative or positive.

To date, testing in Morocco is offered primarily by NGOs27 in close

collaboration with the MoH, which provides the test kits (rapid tests and

Western Blot confirmation tests) and other equipment for VCT centres.

More than 40 VCT centres are currently run by NGOs across Morocco

(including at least six mobile units operated out of vans), but several

regions of the country still have no testing facilities. About 14,000 HIV

tests were performed between July 2007 and December 2008. Nearly three

quarters of all HIV tests in 2008 were performed at VCT sites and mobile

vans operated by one NGO: ALCS.

Uptake and access to testing among women

According to available data, women are relatively well represented at

testing sites in urban areas. In 2008, for example, women comprised more

than half (53.5 percent) of all people tested for HIV at ALCS-operated

freestanding centres, the majority of which are located in urban areas.

Women’s share is much lower in rural and remote areas.

However, all NGO testing sites reported few, if any, pregnant women

coming for HIV tests. The majority of female clients are most at-risk

women (notably, regular or occasional sex workers). Since few of them

become (or remain) pregnant, testing this cohort does not play an

important role in prevention of vertical transmission.

hiV testing for pregnant women

Because there have been no systematic efforts to educate pregnant women

about the risk of vertical transmission and the benefits of VCT, the actual

level of demand for VCT among pregnant women in Morocco is unknown.

With the exception of the few prevention of vertical transmission

programs currently in operation, HIV testing is not available in antenatal

25 Ministry of Health Decree N° 1078/DT/217/SLMSTD (21/09/1989).

26 Diagnostic testing is not technically anonymous because it takes places after the patient is already

registered in a health care facility and has a medical record containing his or her name. However, health

care providers are required to respect patients’ confidentiality.

27 Association de Lutte Contre le SIDA (ALCS), Organisation Panafricaine de Lutte contre le SIDA (OPALS),

Ligue Marocaine de Lutte contre les MST (LM-LMST) and smaller NGOs such as the Association de Lutte

Contre les IST-SIDA (ALIS).

“For now, I do not think

we should rush to

generalize the practice of

testing pregnant women

all over the country. We

must await the results

of the pilot program

and draw the necessary

lessons. Personally, I do

not think we’ll go toward

a generalization but

rather focus the program

in the most affected

areas with the highest

prevalence rates.”

dr. kamal alami, administrator

of the Unaids program

in morocco

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Country Reports, Morocco

care facilities. Some physicians in the private health sector reportedly

give HIV tests to their pregnant patients without informing them. In such

cases, according to respondents, the physician will refer a woman to a

centre of excellence if the test comes back positive—and she is only told

that the test was administered, and the result, after registering at the

centre. The ethics of this practice are questionable.

testing in preVention of Vertical

transmission programs

In the actual prevention of vertical transmission pilot program covering

the cities of Agadir, Casablanca and Marrakech, HIV testing is offered to

all women after a counselling session. The test is never compulsory, and

women are free to decline it. Recent data indicate that most women agree

to be tested. Confidentiality of HIV status is, in theory, guaranteed in the

protocol—but is not always assured in practice. According to a respondent

for this case study, the only woman who had tested positive in one of the

pilot programs was visited at home by a health worker who sought to

force her to disclose her HIV status to her husband.

4. infant feeding gUidelines and trends

In Morocco, about one third of mothers exclusively breast-feed their

babies within the first six months of life28. The MoH’s position on infant

feeding for HIV-positive mothers is clear: breast-feeding is contraindicated.

In Morocco, it is estimated that 80 percent of the population (99 percent

of those in urban areas and 56 percent of rural-dwellers) have access

to safe drinking water sources29; as such, formula feeding is likely to

be appropriate for babies born to HIV-positive women if they receive

adequate counselling in safe formula preparation.

All mothers interviewed for this report said that treatment educators

carefully explained all relevant aspects of replacement feeding, including

how to prepare bottles, after they were informed of their HIV status.

Formula is provided free of charge as long as the child needs it in three

cities only (Casablanca, Marrakech, and Agadir) as part of recently

initiated pilot programs. Elsewhere in the country, formula may be

provided by hospitals or NGOs depending on their capacity; this means,

however, that some families must buy their own formula, particularly in

the cities where there are no NGO programs to support mothers

and children.

5. impact of Violence and stigma

In the cultural and religious context of Morocco, PLWHA are sometimes

considered “sinners” because of the link between HIV and sexuality. Such

attitudes underpin and reinforce the relatively high levels of HIV-related

28 As cited in a speech by Aloys Kamuragiye, the UNICEF representative in Morocco, during the 4th

Regional Forum on Media and the Rights of Children, 28 November 2008.

29 UNICEF, State of the World’s Children Report, 2006.

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stigma and discrimination in the country. As a result, the majority of

PLWHA avoid disclosing their HIV status to their families and closest

friends. It was only in 2005 that an HIV-positive person (a woman)

publicly disclosed her status—on TV, as it turned out.

Women living with HIV seem to face double stigma because of their

status and their gender. For many Moroccans, contracting HIV is a

sign that a woman has acted immorally and inappropriately. A double

standard exists because although unmarried or extramarital sex is mostly

accepted for men, women are expected to remain virgins until marriage

and face great risk of violence or abuse if engaged in adultery. According

to NGO respondents, many HIV-positive women have been abandoned

by their husbands, which contrasts sharply with the fact that in general

women care for their HIV-positive husbands. The fear of stigma is a major

barrier for women to get tested.

Another challenge stems from the fact that HIV-related stigma and

discrimination in health services are far too common. According

to the preliminary results of a study carried out by ALCS, and to be

published in the coming months, most discrimination actually occurs

in health settings. This does not necessarily mean that health workers

are more stigmatizing or intolerant than the rest of the society, but the

impact is far greater because health care facilities are supposed to be

nonjudgmental and open to all. Many of the women interviewed for this

case study said they had experienced stigmatizing behaviour, including

delays in attention or refusal to provide care, from health workers.

In most cases such behaviour occurred in antenatal care facilities, not in

HIV-specific care structures. This proves that with adequate training, the

attitudes and actions of medical personnel can improve immensely. It also

points to a need to provide HIV training to staff throughout the health

care system in order to reduce stigma and discrimination.

6. assessing the work of global agencies

The French organization ESTHER was the first external partner to support

prevention of vertical transmission in Morocco. The organization helped

organize the launch of the pilot study in Rabat by providing funding,

training and technical assistance. Today, the organization supports HIV

care and treatment for adults and paediatric services in four cities of

the country.

UNICEF and UNAIDS have played a major role in prevention of vertical

transmission in Morocco. They have offered assistance to draw lessons

from the pilot study initiated by ESTHER and to develop a strategy

adapted to the Moroccan context. The two agencies are also strong

“When I was giving

birth in the clinic, the

entrance to my room

was marked ‘HIV+

patient’. I felt that nurses

treated me differently

than other women. Some

have refused to change

my sheets.”

36-year-old hiV-positive woman

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partners of the MoH-supported prevention of vertical transmission

pilot program. They have a support role and provide the necessary

technical assistance for the development of the protocol through diverse

consultancies as well as the organization of national workshops and

trainings.

The Global Fund is the major international donor of HIV programs

in Morocco, supporting 46 percent of the cost of the national AIDS

strategy. It provides funds for both the government and civil society to

implement treatment and prevention programs. The country is currently

implementing its second Global Fund program30, to which a prevention of

vertical transmission component was added in 2008. The funds from this

component are being used to purchase equipment and supplies (including

reagents) for the MoH’s prevention of vertical transmission pilot program.

International agencies have played an important role in the

implementation of prevention of vertical transmission interventions in

Morocco as well in terms of advocacy, technical support and funding.

However, a lack of coordination among the involved agencies often

limits their overall effectiveness. Currently, for example, both UNFPA

and UNIFEM are focusing on improving maternal and child health and

promoting reproductive health for women and girls. Better coordination

between these two organizations could improve and facilitate the

transition to the scale-up of prevention of vertical transmission.

recommendations

The following recommendations aim to improve the quality, scale and

scope of prevention of vertical transmission services in Morocco:

• UNAIDS and WHO should identify and document best practices from

low-prevalence countries to provide guidance in developing and

implementing prevention of vertical transmission programs in such

settings.

• To date, the National AIDS Program (NAP) has been the only entity

involved in prevention of vertical transmission. The engagement of

other partners, both governmental and non-governmental, is essential

to ensure effective scale-up. The NAP must develop partnerships with:

• the MoH’s maternal and child health31 sector, because antenatal

services play a crucial role in the delivery of prevention of

vertical transmission;

30 Morocco has been awarded two HIV/AIDS grants to date, in Rounds 1 and 6.

31 Santé Maternelle et Infantile (SMI)

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Country Reports, Morocco

32 Including, for example, the Ministry of National Education, the Ministry of Youth and Sports,

the Ministry of Social Development Family and Solidarity, and the National Initiative for Human

Development (INDH).

• other departments and ministries of a social nature32; and

• civil society.

• Partners involved in the existing prevention programs targeting

women and young girls (the MoH, global agencies, civil society) must

evaluate such programs in terms of addressing prevention of vertical

transmission issues. An important goal would be to increase the

programs’ capacity and ability to generate testing demand among

pregnant women. The MoH must take the lead in this evaluation.

• The MoH, in partnership with civil society and other government

agencies, should develop a clear strategy to scale up IEC about

prevention of vertical transmission for women of reproductive age.

• The MoH must conduct research in the frame of the pilot prevention

of vertical transmission program to identify a reliable list of potential

HIV risk factors for pregnant women.

• The provision of prevention of vertical transmission services requires

an integrated approach as part of a package of services offered to

pregnant women. The MoH’s mother and child health clinics must

include HIV testing and counselling for their clients.

• The MoH and civil society must improve understanding and awareness

of vertical transmission among obstetricians and gynaecologists in the

private sector. This would help promote HIV counselling and increase

pregnant women’s demand for testing.

• Morocco’s family planning program has been relatively successful in

birth control. It should be systematically used to educate women of

reproductive age about vertical transmission, and about the benefits

of VCT for high risk women who are planning to have children in

the future.

• Specific materials (posters, brochures and other information

materials) must be developed by the MoH and civil society for women

and couples. At the same time, specialized materials of a similar

nature should be developed for health workers in order to promote

prevention of vertical transmission.

• NGOs involved in HIV testing must engage in research to explore

the possibility of providing counselling and testing to pregnant

women through their existing network of centres, especially in areas

where MoH-supported prevention of vertical transmission services

are not available.

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Country Reports, Morocco

• A national strategy to combat HIV-related stigma must be

developed and implemented in partnership between the MoH and

civil society. This strategy must target the general public as well as

health care providers.

• The MoH, medical professionals and civil society must collaborate

to provide training to personnel at all health care facilities, and not

only those involved in prevention of vertical transmission, on HIV

awareness and care, ethics, confidentiality, and stigma. The training

should also focus on increasing knowledge about specific concerns in

prevention of vertical transmission such as safe delivery techniques

and ARV prophylaxis.

56

itpc, missing the target 7 | may 2009

Uganda

By Richard Hasunira, HEPS-Uganda; Aaron Muhinda, HEPS-Uganda; Rosette

Mutambi, HEPS-Uganda; and Beatrice Were, AIDS activist

research process and methodology

the data presented in this report were gathered through a review of official documents

as well as interviews with 12 key informants representing the national moh; the

kamwenge district health office in western Uganda; the ogur health centre iV in lira

district in northern Uganda; who; the elizabeth glaser paediatric aids foundation

(egpaf); cesVi (an italian ngo); and the east africa office of the international

community of women living with hiV/aids. the study team also held two focus group

discussions with clients of anc services in the kamwenge and lira districts. a total of

16 women participated in the group discussions. out of the six who participated in the

discussion in lira, five offered to disclose they were hiV-positive. in kamwenge, none

of the 10 participants disclosed their status.

(Note: “$” refers to US dollar amounts.)

1. backgroUnd information

More than 700,000 Ugandan women are living with HIV. The most recent

data (from 2004-2005) indicate a national HIV prevalence rate among

women of reproductive age of 6.5 percent. Without any intervention, the

MoH estimates that about 30 percent of HIV-positive pregnant women

transmit the virus to their babies during pregnancy, labour, delivery or

post-partum through breast milk33. There thus could conceivably be some

27,300 HIV infections among newborns in 2009, based on estimates of

about 1.4 million pregnancies in Uganda in that year34.

Nearly 95 percent of pregnant women attend antenatal care (ANC)

services at least once during their pregnancy. They do not necessarily

have access to comprehensive prevention of vertical transmission services,

however, because just 43 percent of all health facilities that provide ANC

and delivery services have integrated prevention of vertical transmission.

This means that only about 50 percent of expectant mothers were

estimated to have accessed prevention of vertical transmission services in

the 12 months to June 2007 . Between July 2006 and June 2007, a total of

533,436 new ANC clients visited prevention of vertical transmission sites

and about 80 percent (419,171) of them received HIV testing, of whom

7 percent tested positive. About 80 percent of those diagnosed with HIV

were given ARV prophylaxis for prevention of vertical transmission during

pregnancy, and 12,601 babies (42 percent) were given ARVs after delivery.

key points

1. nearly 95 percent of pregnant

women attend antenatal care

services at least once during their

pregnancy, but only 43 percent of

all health facilities that provide anc

have integrated prevention of

vertical transmission services- a

missed opportunity.

2. many clinics and other sites

providing prevention of vertical

transmission services experience

regular stock-outs of arVs and

prophylaxis medicines due to

problems related to inefficiencies

in the supply chain and

distribution system.

3. mothers reported feeling they can

afford neither exclusive breast-feeding

nor the recommended alternatives.

stigma, poor nutrition (among

mothers), cultural pressures and

general poverty have forced many of

them to the more risky mixed

feeding practice.

4. the health infrastructure does not

have the human or financial capacity

to meet the increased demand created

by women seeking prevention of

vertical transmission services.

33 Programme for Prevention of Mother-to-Child Transmission of HIV, Annual Report (July 2006-June

2008), MoH, p.1.

34 Interview with William Salmond, country director, Elizabeth Glaser Pediatric AIDS Foundation.

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Country Reports, Uganda

The MoH and UNICEF initiated a pilot prevention of vertical transmission

program at three hospitals in Kampala in 200036. In 2001, the MoH

drafted a five-year scale-up plan, with a target of reducing transmission

by 25 percent by 2005 through the provision of a comprehensive package

of services to HIV-positive mothers, their spouses and their newborns37.

The plan was to establish prevention of vertical transmission services

in at least one health facility per district by 2004 and then scale up to

Health Centre IVs38 by 2005. The ministry upgraded the scale-up plan to

a national prevention of vertical transmission policy in May 2003. The

policy was last revised in August 2006.

2. statUs of serVice deliVery among

and for women

The MoH currently implements the prevention of vertical transmission

policy through the Sexually Transmitted Diseases (STD)/AIDS Program.

The policy provides for the four prongs of comprehensive services:

primary prevention; family planning for HIV-positive women; prevention

of mother-to-child transmission; and care and support for HIV-positive

expectant mothers and their families. The national strategy focuses on

integrating these services into the reproductive health service package;

thus prevention of vertical transmission services in Uganda are provided

in the general context of sexual and reproductive health services39. The

entry point for prevention of vertical transmission services is antenatal

care, which is provided by accredited public, mission (NGO) and private

facilities at the level of Health Centre III and above40. Only a few Health

Centre IIIs currently provide prevention of vertical transmission services.

The basic package for prevention of vertical transmission involves testing

mothers and their partners for HIV and helping them make safe infant

feeding choices. At higher levels of service provision, additional diagnostic

tests are offered, ART and/or ARV prophylaxis are made available, and

ancillary support such as food supplements and insecticide-treated

mosquito nets may be offered.

35 Programme for Prevention of Mother-to-Child Transmission of HIV, Annual Report (July 2006-June

2008), MoH, p.9.

36 Bajunirwe F., et. al (2004): “Effectiveness of nevirapine and zidovudine in a pilot program for the

prevention of mother-to-child transmission of HIV-1 in Uganda,” African Health Sciences, Vol 4, No.3.

37 Programme for Prevention of Mother-to-Child Transmission of HIV, Annual Report (July 2006-June

2008), MoH.

38 In Uganda’s health structure, a Health Centre IV is at the level of health sub-district and is the lowest

referral facility, just below the level of a hospital.

39 Interview with Dr. Godfrey Esiru, national PMTCT coordinator, MoH.

40 In Uganda’s health structure, a Health Centre IV is at county level; Health Centre III at sub-county; a

Health Centre II at parish level; Health Centre I at village/community level.

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The chart below provides a summary of key elements of the prevention of

vertical transmission package and the level(s) at which they are provided.

anc

iiycfc hiV

ipc

pnc

sdn

aZt

aZt+3tc haart

testing

+sdn

+sdn

hc ii

√

√

+

+

+

+

_

_

_

basic package

hc iii

√

√

√

√

√

√

+

+

_

intermediate

package

hc iV/hospitals √

√

√

√

√

√

√

√

√

comprehensive

package

key:

hc

= Health Centre

iiycfc = integrated infant and young child feeding counselling

anc

= antenatal care

ipc

= intra–partum care

pnc

= post-natal care

sdn

= single-dose nevirapine

aZt

= zidovudine

3tc

= lamivudine

haart = highly active antiretroviral treatment

√

= service is provided

-

= service only available in some of the facilities

_

= service not provided at that level

Not all of these services are easily accessible, however. Comprehensive

prevention of vertical transmission services are not readily available

to all women and children who need them in Uganda, especially in

remote rural areas as well as the northern region, which is in a post-

conflict situation41. Many clinics and other sites providing prevention of

vertical transmission services experience regular stock-outs of ARVs and

prophylaxis medicines due to problems related to inefficiencies in the

supply chain and distribution system.

Counsellors ordinarily give HIV-positive mothers the option to formula-

feed or breast-feed, but it is almost routine for mothers to choose

exclusive breast-feeding because it is what is nearest to what is possible42.

The fact is that most mothers in Uganda, and especially those in post-

46 Interview with Dr. Godfrey Esiru, national PMTCT coordinator, MoH.

47 Interviews with Dr. Laura Kaddu, CESVI, and Dr. Vincent Mubangizi (DHO, Kamwenge), and findings

from focus group discussion in Kamwenge.

48 Interviews with Dr. Godfrey Esiru (MoH), William Salmond (EGPAF), Dr. Vincent Mubangizi (Kamwenge

DHO), and Mary Frances Okello (Ogur Health Centre).

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war northern Uganda, currently cannot afford infant formula. On the

ground, among the women interviewed, there was a feeling among

pregnant women that their breast milk was insufficient due to moderate

malnourishment, and they were likely to try to supplement it with other

feeding, a step that eliminates the risk-protective factor of exclusive

breast-feeding.

The health system does not provide free infant formula, the first

recommended infant feeding option for women who might need it.

Another major challenge is that the health infrastructure and staff do

not have the human or financial capacity to meet the increased demand

created by women seeking prevention of vertical transmission services.

preVention of Unintended pregnancies

Prevention of unintended pregnancies, even for women in the prevention

of vertical transmission program, is the responsibility of family planning

clinics within health facilities. Yet the options offered at family planning

clinics for avoidance of unintended pregnancies are limited43. Antenatal

clients at Ogur Health Centre in Lira District complained that they

were offered only one brand of contraceptives—Pilplan and Injectaplan,

which some women perceive to have high side-effect profiles—and male

condoms, the use of which is not necessarily in women’s control44.

proVision of serVices for hiV-positiVe mothers, their

partners and their families

Care and support for mothers and their infants is one element of the

national prevention of vertical transmission policy that appears to have

received particularly substandard attention. The programs to which

mothers are supposed to be referred for nutritional support no longer

exist45. From the focus group discussions, it emerged that most ordinary

mothers feel they can afford neither exclusive breast-feeding nor the

recommended alternatives. Stigma, poor nutrition (among mothers),

cultural pressures and general poverty have forced many of them to the

more risky mixed feeding.

barriers to comprehensiVe serVice deliVery and

lessons learned

Findings indicate that shortages of health workers and infrastructure and

supplies are the most critical barriers to scaling up a comprehensive set

of prevention of vertical transmission services in Uganda. The prevention

of vertical transmission policy provides for the roll-out of services up to

the level of Health Centre III (sub-county level). However, according to the

MoH, only 53 percent of all HC IIIs were providing prevention of vertical

transmission services by June 2007 due to a shortage of health workers to

provide such services at that level.

43 The policy guidelines do not specify which family planning methods should be available at clinics.

44 Focus group discussion held at Ogur Health Centre in Lira District on 30 January 2009.

45 Focus group discussions in Lira (30 January 2009), and Kamwenge (23 January 2009).

“One of the biggest barriers

to women utilizing PMTCT

services is limited male

involvement. The program

mandates husbands to

accompany their wives

when they go for ANC

services and HIV testing,

but women are not

taught how to convince

their partners to go with

them or how to disclose

a positive test to them.

And don’t forget, some

pregnancies don’t involve

men who are visible or

nearby; some may be a

result of rape, some fathers

deny responsibility, and

some are no longer living.

In general, the program

demands too much from

the woman.”

florence buluba, icw east africa

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Country Reports, Uganda

It is also important to recognize that measuring coverage on the basis

of the proportion of health centres providing prevention of vertical

transmission services masks inequalities in the distribution of prevention

of vertical transmission sites because distribution of health centres is not

uniform across the country. In districts with few and scattered facilities,

particularly those in Karamoja and northern regions, long distances to

facilities limit access to services by expectant mothers46.

Other notable barriers to women utilizing prevention of vertical

transmission services include medicine stock-outs, limited male

participation and involvement, and HIV-related stigma and discrimination.

notable lessons learned inclUde the following:

• If accompanied by referral information and resources, outreach HIV

testing tends to increase uptake of prevention of vertical transmission

services and male participation. CESVI’s outreach-referral project

in the Karamoja region’s Abim district and that of Catholic Relief

Services (CRS) in western Uganda have resulted in an increase in

women enrolling for prevention of vertical transmission. About 39

percent of individuals tested in these projects were male47. (Both

projects have subsequently ended, although CESVI reportedly is

planning to initiate a similar one in northern Uganda. Resource

constraints, both human and financial, have hindered efforts to

implement such projects over the longer term.)

• The implementation of the prevention of vertical transmission

program has supported improvements in the quality of antenatal and

delivery care. Vital training has been made available to health care

personnel at facilities where the program is being implemented. Some

facilities have also had their infrastructure renovated to create space

for VCT services, including laboratories. EGPAF, for instance, allocates

$80,000 annually to each of 27 districts in which it operates, with the

money targeted to support reproductive health programs48.

• Uganda’s experience with prevention of vertical transmission service

delivery to date has demonstrated that coordination of the various

service providers is necessary to avoid duplication and to ensure that

adequate services are rolled out for hard-to-reach populations. The

MoH has allocated distinct parts of the country for various NGOs to

focus on. However, although this effort has successfully distributed

services, effective coverage seems to vary with the capacity of the

service provider. For example, EGPAF, which provides services directly

46 Interview with Dr. Godfrey Esiru, national PMTCT coordinator, MoH. Interviews with Dr. Laura

Kaddu, CESVI, and Dr. Vincent Mubangizi (DHO, Kamwenge), and findings from focus group discussion in

Kamwenge.

47 Interviews with Dr. Godfrey Esiru (MoH), William Salmond (EGPAF), Dr. Vincent Mubangizi (Kamwenge

DHO), and Mary Frances Okello (Ogur Health Centre).

48 Interviews with William Salmond (EGPAF) and Dr. Betty Mirembe (EGPAF).

“The government has not

given prevention the weight

it deserves; it focuses

too much on treatment.

Food supplements are far

cheaper than ARVs, so why

can’t we put more money

into food supplements for

six-month-old babies to

save their lives?”

dr Vincent mubangizi, district

health officer, kamwenge district

61

itpc, missing the target 7 | may 2009

itpc, missing the target 7 | may 2009

Country Reports, Uganda

to 64 percent (about 450,000 of 700,000) of prevention of vertical

transmission clients, operates in only 33 percent (27 of 81) of the

country’s total districts49.

3. hiV testing: access and other issUes

HIV testing services are on average widely available in Uganda. (Other key

diagnostic services, particularly CD4, viral load and organ function tests,

are less commonly available, however.) Rapid HIV tests are available in

both facility and outreach settings. In public facilities, HIV tests are free;

in private not-for-profit facilities receiving support from government,

clients pay for “consultation”; while private facilities charge direct fees50.

HIV testing is voluntary in Uganda, but a provider-initiated policy is

utilized in the prevention of vertical transmission program. This means

that although HIV tests are strongly encouraged, pregnant women can

decline (e.g., opt out). However, according to several respondents and

focus group participants, it is difficult if not impossible for pregnant

women to refuse an HIV test. Many said that an HIV test is in fact “a

must” for pregnant women who visit health centres for ANC.

Where VCT services and counsellors are available, expectant mothers

are provided adequate information on the benefits of testing for HIV

for themselves and their babies. In such locations, uptake of services is

higher because clients generally understand that an HIV test is just one

of the various tests they should undertake for their own good and for the

good of their babies. In remote and hard-to-reach rural areas, however,

including in much of the north, the information mothers receive may not

be adequate due to capacity limitations in terms of health care personnel

and counsellors. In such disadvantaged locations, mothers are more likely

to feel coerced into taking an HIV test.

Nevertheless, the opt-out policy, which in 2006 replaced an opt-in policy

in which the client had to specifically request an HIV test, has apparently

improved access to prevention of vertical transmission services. One

indication is that uptake of HIV testing increased from about 60 percent

of all new ANC clients in 2004 to 80 percent in 2006-200751.

The official policy provides for confidentiality of test results. The patient

registers are in principle kept under lock and key and are supposed to be

accessed only by health personnel. However, women visiting prevention

of vertical transmission clinics say confidentiality is in effect breached

by the public nature of service provision, because some facilities have

specific clinics for prevention of vertical transmission clients while other

ANC clinics have specific days they serve clients.

49 Interviews with William Salmond (EGPAF) and Dr. Betty Mirembe (EGPAF).

50 “Consultations” and direct fees both require patients to pay, but the amounts differ greatly. Direct

fees are usually up to 10 times higher than consultation fees.

51 PMTCT Program Annual Report (July 2006-June 2007), MoH, p.10.