The
report, titled Early Infant Diagnosis: Understanding the Perceptions,
Values and Preferences of Women living with HIV in Kenya, Namibia and
Nigeria, explored the values and preferences of women living with HIV
regarding the current World Health Organization (WHO) recommendation of
testing babies within the first 4–6 weeks of life in order to understand
facilitators of, and barriers to, follow-up testing. The research was
commissioned by the WHO to inform the development of new guidelines on
EID and conducted by the International Community of Women Living with
HIV (ICW) and the Global Network of People Living with HIV (GNP+).
Women
living with HIV in all three countries report that adequate information
and counseling on infant testing, including on the need to return for a
confirmatory diagnosis, are not provided systematically and that
vertical transmission programs have failed to sufficiently address
persistent stigma, discrimination and rights violations in healthcare
settings. For example, women in Kenya and Nigeria raised concerns that
health workers did not always seek their informed consent to perform HIV
tests.
They didn’t seek my consent, it was more like force.
- Woman living with HIV, Nigeria
- Woman living with HIV, Nigeria
The
nurses don’t give information. The environment in the hospital is not
good because some of the nurses the way they talk to us patients is not
good. Instead of talking to you in a polite way they are just shouting
at you, laughing at you, saying look at yourself you are HIV positive
and you are giving birth. It is the attitude of the nurses that
contributes to the problem [of women not coming forward for infant
testing].
- Woman living with HIV, Namibia
- Woman living with HIV, Namibia
The
WHO is considering new recommendations that infants born to women
living with HIV receive a virological test at birth, and then the infant
should be tested again at 4–6 weeks of age. Women in all three
countries saw potential benefits of this practice, such as reduced
anxiety about their child’s HIV status and knowing how to feed and care
for the baby from early on. However, they also expressed concerns
including the psychological impact of learning about their child’s HIV
status soon after giving birth, and risk of disclosure of HIV status to
family members who would be present at the birth.
Given
the concerns about the potential increased stigma around testing at
birth, the report calls for women living with HIV to be provided with
information and counseled about testing options at an early stage (not
just prior to or directly after delivery), to give mothers time to make
an informed choice on the timing of HIV testing for infants.
“Women
living with HIV must have access to accurate and comprehensive
information about all aspects of prevention of vertical transmission of
HIV, including infant testing and feeding, so that they can make
informed choices. Their choices must be respected and their human rights
protected,” said Rebecca Matheson, ICW Global Director.
The
report highlights that increased uptake of infant testing is especially
dependent upon the quality and availability of peer support and
counseling. Pregnant women living with HIV reported receiving most
information and support from other mothers or pregnant women living with
HIV. Programs to prevent vertical transmission of HIV, must recognize
and support the efforts of women living with HIV and their communities,
or ambitious global and national targets will remain unmet.
“As the WHO prepares to issue new guidance, and countries prepare to
step up their programs on early infant diagnosis, donors and governments
need to move from rhetoric to actual investment in community-led
treatment literacy and peer support.” said Suzette Moses Burton,
Executive Director of GNP+.
Via a press release from ICW
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