New ICW and GNP+ Study on Early Infant Diagnosis Calls for Quality Information and Informed Choices for Women Living with HIV

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New ICW and GNP+ Study on Early Infant Diagnosis Calls for Quality Information and Informed Choices for Women Living with HIV

Released date: 20-Jul-2015

Women are supposed to be given information on testing. No mother wants to give birth to [a] HIV positive baby… the [reason] some of the women don’t
come for baby tests was because they were not given enough information on the importance of baby testing.

– Woman living with HIV, Namibia

Vancouver, Canada, 20 July 2015 — Today, at the 8th International AIDS Society Conference on HIV Pathogenesis, Treatment and Prevention
(IAS 2015), new community-led research conducted in Kenya, Namibia and Nigeria, reveals that a lack of quality information and continued stigma and
discrimination against women living with HIV in health care settings is hampering efforts to scale-up early infant diagnosis of HIV (EID).

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

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

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

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+.