Life-changing service helping children and families with HIV

In the 40 years since the first Australian case of the human immunodeficiency virus (HIV) in 1981, the Sydney Children’s Hospital, Randwick, has been home to the nation’s only designated paediatric HIV service.

The Hospital’s Paediatric HIV Service was established in 1989 by immunologist Professor John Ziegler, who recognised early on the need for such a service for children and their families living with HIV in NSW and Australia. He assembled a multidisciplinary team of a nurse, social worker and young doctor to attend to HIV infected children and, importantly, the needs of the families. He cared for HIV infected children up until his relatively recent retirement.

As the state-wide lead in the management of paediatric HIV, our multidisciplinary service (which now consists of three infectious disease senior doctors and two juniors, social workers, a clinical nurse consultant and dietician) has helped change the lives of many families affected by the virus in New South Wales, Australia and now also New Zealand.

It provides medical, nursing, and social work support to children, families and pregnant women living with HIV in NSW, as well as provide consultations and educational opportunities and resources across Australia, New Zealand, and our Asian and Pacific neighbours.

Associate Professor Pamela Palasanthiran, now the Head of the Paediatric HIV Service, has been with the service since its inception and has witnessed the evolution and journey of paediatric HIV -from the changes in management, treatment and highly effective ways of preventing HIV transmission to seeing children with HIV grow up into beautiful young adults.

When she started as a research fellow under Professor Ziegler in the early years of the epidemic, children living with the virus had little hope. She has seen the evolution of the treatment landscape for these children, transforming it from one of desperation and severe illness to one where there is effective treatment. Nowadays children living with HIV in Australia have access to highly effective antiretroviral therapy to control the virus, which allows them to lead a healthy life.

“I remember with great fondness but also great sadness the kids in the late 80s and early 90s who were incredibly sick with HIV, and whose lives were tragically short. There was almost nothing we could do for them,” A/Professor Palasanthiran said.

“We had only one antiretroviral in the late 80s which lost its effectiveness pretty quickly and other antiretroviral options for children were almost nonexistent. In the early days, we were unsure how to treat HIV in children because there were so few options for treatment, and whatever was available as children friendly formulations were unpalatable.

“In addition, we were not really sure of the optimal time to start treatment, as we were concerned that these may be very strong medications for children who would have to take these medications lifelong.

“We have come a very long way since then. We learnt how to treat children effectively in the last decade and now the treatment we are able to offer is just incredible. These children now have normal immune systems and live a full, healthy life, like any other child. That’s the massive difference – they’re healthy children and are no longer hospitalised.”

“We also now see children reach adolescence, transition and many are now young adults, some with families of their own”.

According to the Kirby Institute, in 2020 there were 633 new cases of HIV in Australia which was a decline of 36 per cent over five years. Among those cases, there was only one HIV notification for children aged 0-14 and 10 for those aged 15-19.

The HIV team has been instrumental in roles to reduce the risk of transmission from mother to child, which is the main mode of transmission of HIV to children today.

In 1985, Professor Ziegler and colleagues, were the first in the world to describe HIV transmission from mother-to-child via breast milk. Eight years later the team went on to define the risk of the infant being infected with HIV via breast feeding during ‘primary HIV’ i.e. the time when mothers are first infected with HIV. This information was a key aspect in contributing to studies and further information on mother-to-child prevention strategies.

Without effective prevention strategies, at least one in four pregnant women living with HIV will transmit the virus to their infant. However, the development of effective strategies has reduced this to less than one per cent in Australia and in other countries worldwide where prevention strategies are readily available. These strategies include management plans, effective antiretroviral medications to the mother, giving the infant a short course of preventative anti-HIV medication and formula feeding.

“In countries where there are proper prevention strategies, you can virtually eliminate HIV transmission to children, which is happening in our country,” A/Professor Palasanthiran said.

“It’s rare for women who are managed in Australia and have options for preventative strategies, which are the vast majority, to transmit the virus to their baby. But in poorer countries, it’s very different.”

Although most children managed by the Paediatric HIV Service are clinically well today, the social ramifications of the virus are still challenging – particularly for teenagers trying to navigate their way through to adulthood while managing treatment, and living with HIV.

Children and families living with HIV often experience immense social isolation, stigma and other physiological and medical challenges relating to their diagnosis.

This is where our social workers, Louise Dolahenty and Kate Lenthen come in.

“We, as social workers, provide support strategies for managing any emotional distress or concerns that come with being a young person living with HIV, as well as their families and carers,” Louise said.

“Often children and families have to hide their HIV status due to the fear of being subjected to ongoing stigma and discrimination. We support and advise on how to manage disclosure and privacy, as well as navigating the legal requirements and responsibilities in regards to these issues.

“Within the HIV team, the social worker represents the psycho-social needs and concerns for children, young people and their families. We advocate on behalf of their social needs so they’re considered into the medical model of care and treatment around HIV.”

Within this multidisciplinary the team, the Clinical Nurse Consultant, Geraldine Dunne, amongst a multitude of roles, provides for, and coordinates the clinical care of the children, ensures families are looked after and is an invaluable focal point of the service for families. We also attend to other health needs with our dietician, Ashley Maiden, providing expertise in healthy eating for these children.

Through the developments of HIV treatment and the holistic care of our service, SCH has been able to transition many patients to adult health care services.

Today, on World Aids Day, we acknowledge the children and families living with HIV and the vital role our service plays in giving them the best future possible.  

Our invaluable HIV Team members include Associate Professor Pamela Palasanthiran, Drs Brendan McMullan, Adam Bartlett, Meghan Gunst & Mirvat Said, Geraldine Dunne, Kate Lenthen, Louise Dolahenty and Ashley Maiden.