Amivi’s story: Preventing mother-to-child transmission of HIV in South Sudan

The 20th International AIDS Conference (AIDS 2014) is being held this year in Melbourne, Australia, from July 20-25th. The biannual conference is one of the most important events in the HIV calendar, and gives an opportunity for a diverse range of voices to come together, share experiences and drive forward positive change for the HIV epidemic. This guest blog series will include reflections from key organisations working in the field of HIV - the HIV/AIDS Alliance, STOPAIDS, CAFOD and Save the Children. The second blog in the series comes from Dr David Lai, PMTCT & Paediatric HIV Advisor at Save the Children.

Dr. David Lai, PMTCT & Paediatric HIV Advisor, Save the Children

Amivi*, 27, who is living with HIV, has been going to the one Save the Children’s health facility in Nimule every day to receive free antiretroviral (ARV) treatment. Despite the ongoing conflict in South Sudan, Save the Children has continued its effort to care for the children in this global hot spot. Today, she is at the centre not only for her own medical care but to follow up on the HIV status of her 18-month-old daughter, Yabo*. During her pregnancy, Amivi received ARV treatment for prevention of mother-to-child transmission (PMTCT) of HIV at a Save the Children UK supported health centre in South Sudan. But she could not be sure of her daughter’s status until now.

“The doctor told me that at the beginning of a baby’s life, it is the mother’s blood which is flowing in the baby’s veins. Then, progressively, the child produces its own blood and antibodies,” said Amivi. “When Yabo was one, she tested positive. Today, my daughter did the second test, the 18-month one, and she is negative. What a relief!”

In South Sudan, where 3.3 percent of the population and a higher percentage of pregnant women are HIV-positive, only about 20 percent of expectant mothers are tested for the virus. Out of some 3,000 HIV-positive pregnant women living in Magwi County, only 15.5 percent are receiving PMTCT treatment. According to national survey data, 6 out of 10 South Sudanese women are not even aware that such treatment exists – so they don’t automatically think about taking an HIV test when they get pregnant. In Nimule, through our integrated health services, Save the Children have identified 52 HIV positive pregnant women and have linked them up to PMTCT programme.

When Amivi became pregnant, she overcame her natural shyness and the social stigma attached to HIV, speaking out about the virus and offering other women advice on how to prevent it. “As a mother, it is my duty to accept my status,” she said. “If no one had informed me that pre-natal consultations for HIV-positive people were free at The Save the Children Hospital, my daughter might already be dead.”

Around the world, countries are recognising the need for alignment between services for maternal and child HIV and broader maternal, newborn and child health (MNCH). Without intervention, up to half of the 1.5 million pregnant women globally will transmit HIV infection to their children either during pregnancy, child birth or through breastfeeding (1). Global effort has made some achievements. New infections in children dropped to 260,000 in 2012, a decline of 52 percent since 2001; and a decline of 64 percent in paediatric AIDS related mortality (1).Political leadership has been central to this success, most notably in the scale-up of prevention and treatment programmes and the drive for integration of HIV services for children and families within routine sexual and reproductive health (SRH) and MNCH services. A dramatic acceleration in reduction of child mortality has occurred in parallel to this, but not enough to reach the MDG 4 goal of a two-thirds reduction by 2015.

A large proportion of pregnant women living with HIV still do not receive ARVs and many who start treatment are lost to follow up after delivery. Early identification, initiation of ARVs and retention of pregnant women living with HIV are critical bottlenecks in reducing maternal and child mortality. Infants exposed to HIV and children (both HIV infected and uninfected) are at significantly increased risk of mortality. In 2012, 62 percent of pregnant women with HIV were reached with ARV’s, but loss-to-follow-up was as high as 89 percent among those reached (2). Early infant testing of HIV is available to only a minority of children exposed to HIV. Half of children born with HIV will die by the age of two, and 80 percent will die by age five (3). In 2012, only 35 percent of children exposed to HIV received a test by the recommended two months of age that would permit early initiation of lifesaving treatment among those identified. Only a minority of these was linked into care. In high prevalence settings, integrating HIV testing into existing child health settings such as the expanded programme on immunization, paediatric wards, nutrition clinics, under-five and community-based health programmes can greatly improve earlier identification of HIV exposed children, and speedier linkage to care and treatment.

And Amivi aims to continue telling her story as a lesson for her peers. “I don’t want my daughter to suffer as I have,” she declared. “My story is that of every woman in Africa.”

The time to act is now; there is an opportunity to accelerate the fight against HIV and improve maternal and child survival. We need to build on the growing momentum to improve the health and wellbeing of women and children living with through political, technical and global leadership. The mandate of Save the Children has always been very clear. Save the Children gives children around the world what every child deserves -- a healthy start, the opportunity to learn and care when disaster strikes. We save children's lives.

*Names have been changed.

Save the Children will have panelists on a number of sessions and events during AIDS 2014, including:

• Greg Ramm – Global Partners Forum on Protection, Care and Support for Children Affected by HIV and AIDS, a UNICEF event (July 20).
• Dinatu Bawa – Ending the HIV epidemic in adolescents (July 20)
• Vanessa Veronese – Step by Step: Preparing Harm Reduction Organizations to Work with Children who Inject Drugs (July 23)
• Alice Fay – Investing for Results: Equipping Governments, Development Agencies, Non-Governmental Organisations (NGOs) and Other Actors with the Knowledge and Skills to Deliver Effective HIV Responses in Humanitarian Emergencies (July 23)

For further information about their work and the work of their partners, visit them at their AIDS 2014 booth (#205).