World AIDS Day

Today, on World AIDS Day, we acknowledge the children and families living with and affected by Human Immunodeficiency Virus (HIV). Sydney Children's Hospital, Randwick (SCH) is the state-wide lead in the management of paediatric HIV. The Paediatric HIV Service provides counselling care of pregnant women living with HIV during their pregnancy, in order to prevent transmission of the virus to their baby, and continues to provide care and testing for these children after they are born. Children living with HIV now have access to highly effective antiretroviral therapy which allows them to live essentially ordinary, healthy lives, but they still face challenges. Our team from the Paediatric HIV Service explains more about the support available for pregnant women and children living with HIV in NSW.

What is the SCH HIV Service?

The Paediatric HIV Service at SCH, works with children, families and pregnant women living with and affected by HIV. The Paediatric Human Immunodeficiency Virus (HIV) Service

The service includes specialist Infectious Disease doctors, Clinical Nurse Consultant, Senior Social Worker and Dietitian.

What kind of care and support does the service provide?

The HIV service provides comprehensive health care to all families in NSW, regardless of where children living with HIV receive their medical treatment. The aim of the service is to help affected children and families maintain healthy lives with access to treatment and support, and to provide children with the opportunities needed to reach their maximum potential.

When was the service established?

The service was initiated in 1989 by Professor John Ziegler , who was an early pioneer in the field of Paediatric HIV diagnosis and management and built up the service up to include the multi–disciplinary team as we know it now.

Is there any other paediatric HIV service like this in Australia?

SCH is the state-wide lead in the management of paediatric HIV. It was the first multidisciplinary paediatric HIV service in Australia. Similar models of care are now available in many other tertiary paediatric facilities across Australia. The service at SCH also provides some unique services in Australia and New Zealand, including camps for children and families living with HIV, and hosts an educational videoconference series for paediatric HIV services across Australia and New Zealand. 

How many HIV-positive patients are there currently being cared for by SCH?  

There are currently nine children living with HIV who are cared for at the Randwick precinct and three children at the Westmead precinct. Both services also are involved in counselling care of pregnant women living with HIV during the pregnancy, in order to prevent transmission of HIV to their infant, and continue to provide care and testing for these infants after they are born.

What is the prevalence of HIV in Australia?

On a global scale, the prevalence of HIV is fortunately low in Australia. It is estimated that approximately 29,000 individuals in Australia are living with HIV, resulting in a population prevalence of <0.15%. There are less than 100 children (age 0-14 years) living with HIV in Australia.

How do children contract the virus and can it be prevented?

The main mode of HIV transmission for children is from their mother, either during pregnancy, delivery or breastfeeding. About 1 in 4 pregnant women with HIV will transmit the virus to their infant if prevention strategies are not used. Strategies which involve a combination of maternal and infant care and follow-up, available in Australia, have been very successful in preventing children being infected with HIV.

Testing for HIV during pregnancy (antenatal testing) is not mandatory but fortunately, is routinely recommended. Women who are diagnosed with HIV before pregnancy or, as in some cases, from antenatal testing, are able to take up highly successful strategies to prevent transmission to the baby as they know their diagnosis. These include taking antiretroviral medications to treat their HIV so that the virus is under good control (suppressed), giving the baby a short course of preventive anti-HIV medication and formula feeding the baby. These strategies have now reduced transmission to substantially less than 1 in 100 HIV pregnancies (< 1%).

What does treatment involve?

Children living with HIV now have access to highly effective antiretroviral therapy that allows their virus to be suppressed to undetectable levels, such that their immune system is not attacked by the virus and is kept healthy. This enables them to live ordinary, healthy lives. These children need to take medications daily which can sometimes be a lot for the child or family to cope with, and with our multi-disciplinary teams’ support for the family, these children have excellent long-term health outcomes.

For pregnant women living with HIV, we provide an individualised care plan to help prevent transmission of HIV to their newborn infant, which includes a few weeks of medication for their newborn baby. We follow these infants up closely.  Over 100 infants have avoided HIV infection through the counselling and care our service provides, over the past three decades. Pleasingly, many of these women go on to have many children through our service and are well supported with each pregnancy to prevent the transmission of HIV.

Is there still a stigma surrounding HIV/AIDS?

Unfortunately yes. Stigma in HIV can arise from a lack of understanding, knowledge, or empathy among members of the wider community. This stigma not only affects people living with HIV but their families. Children with HIV still experience discrimination and stigma. Families often still don’t disclose their HIV status and the family may struggle with keeping this secret.  We assist children and their families manage these issues, including working with the child and family on their understanding of their health as they grow up.

Why is World AIDS Day important?

World AIDS Day is important for children and families affected by HIV on many fronts. It affords us the opportunity to acknowledge the families and children we have known and cared for over the years.  It commemorates the children and parents who lived through the difficult and dark early era when we knew little about how to prevent the transmission or how to treat HIV. Most of these children and many of their parents have now passed on and we remember them. World AIDS Day also allows us to acknowledge our families and children now who live with HIV, leading their lives in the community with successful treatment, but who still face challenges. We celebrate parents who raise children, uninfected thanks to successful prevention programs.

World AIDS Day helps us raise awareness of issues people with living with HIV face and address ignorance. World AIDS Day lets us not forget and maintains our focus to further reduce the burden of HIV in the community.