Paediatric HIV in Australia: 30 years of a changing landscapeadmin
Paediatric HIV in Australia: 30 years of a changing landscape
HIV Australia | Vol. 11 No. 1 | March 2013
ANGELA MILLER, JOHN ZIEGLER and PAMELA PALASANTHIRAN chart the history of HIV among children in Australia.
The Paediatric HIV Service at the Sydney Children’s Hospital, Randwick, is the only designated Paediatric HIV Service in Australia.
It provides medical, nursing and social work support to children, families and pregnant women living with HIV.
The service was established in 1989 by immunologist, Associate Professor John Ziegler who remains the head of the service today.
The team comprises a full-time clinical nurse consultant, full-time senior social work cover (currently shared between two medical social workers) and medical consultants (currently shared between three doctors).
Clinical services are supported by a dietician from the HIV community team and neuropsychological testing via the Sydney Children’s Hospital, Randwick.
In addition to the statewide clinical support, the service provides consultation and education throughout Australia and the greater region.
The service is also responsible for the coordination and provision of three residential camps each year, including the national Camp Goodtime.
A history of children and HIV in Australia: then and now
Children in Australia who became infected HIV in 1985 or earlier generally acquired the virus through contaminated blood products; these were mainly children with medical conditions that required multiple blood products for treatment (e.g. children with bleeding conditions like haemophilia, and premature babies who needed blood cells for anaemia).
Since 1985, all blood products used in Australia have been screened for HIV and new HIV infections in Australia among children are the result of mother-to-child-transmission (MTCT) – an extremely rare event in this country since the discovery of effective MTCT prevention strategies.
The Paediatric HIV service has been directly involved in the care of about 60 children with HIV. About a fifth of these children were born prior to 1985, and thus mainly contracted the virus through contaminated blood products.
The remainder acquired HIV perinatally – the majority born in the era prior to effective prevention for MTCT.
Until the mid-90s, children with HIV were often very unwell. This was a time prior to the advent of highly effective antiretroviral therapy (HAART), which did not become available until after 1997.
In those early days, children with HIV did not generally live beyond the first decade of life. Medical care was acute, and based on treatment of symptoms in children who were severely immune-compromised, with multiple HIV-related complications necessitating frequent hospital admissions.They often had difficulties with growth and were significantly smaller than other children their age.
1997 saw introduction of antiretroviral (ARV) therapy, with zidovudine (AZT) initially being the only drug available. Children commenced AZT as monotherapy, the effectiveness of which lasted a few months, at most.
Even after more ARVs came on the market, children with HIV continued to be disadvantaged because availability of paediatric ARV formulations (syrups or solutions) was limited, making optimal therapy difficult.
Nursing support was focused on end-of-life care, and social work supports revolved around bereavement support for families and permanency planning for children whose parents had died or whose parents were too unwell to care for them.
In the background was the lack of appropriate knowledge about HIV and the resultant prejudice and stigma these children and their families faced in those early days. There were instances of HIV-positive children being ostracised from schools, a cause of great angst for the families in that situation.
The Paediatric HIV service assisted some families with school disclosures which helped children with HIV assimilate into school life.
Many readers may recall ‘Troy’s’ story and the tireless championing by his father, Vincent, to dispel the negative myths surrounding HIV, in part via a film about Troy’s life in the early 90s (A Kid Called Troy).
Today, after three decades of international research, we now have strong evidence-based paediatric HIV management guidelines.
Although the ‘HAART era’ dates from 1997, clear guidelines for treatment of HIV in children lagged several years behind. Thus, for children, HAART did not truly begin until around the year 2000.
HAART is now routinely used to treat HIV, and many of its components are now available as paediatric formulations. We have clear and effective management pathways, particularly regarding what ARVs to put HIV-positive children on, and the optimal timing to treat children.
Treatment is effective, and it is rare for an HIV-positive child to be hospitalised. HIV-positive children in Australia are now generally well and indistinguishable outwardly from their healthy counterparts.
Multidisciplinary support focuses on the long term management of HIV as a chronic illness, addressing issues affecting medication adherence – including psycho-social issues regarding disclosure, dealing with adolescence, and transitioning to adulthood and adult services.
Associate Professor Ziegler was the first in the world to document HIV transmission via breast milk,1 information which became one key aspect in mother-to-child prevention strategies.
The team later went on to define the risk of the baby being infected with HIV if exposed to HIV from breast milk, if the mother has seroconverted during the period she is also breast feeding.2
With MTCT risks ranging from 25–40% without intervention, the evolution of evidence and therefore effective strategies to reduce this risk is one of the most significant scientific developments since the epidemic.
Aside from the association with breast feeding, the other landmark was the PACTG 076 study in 1994 which showed that maternal zidovudine (AZT) taken orally from the second trimester, intravenously during labour and orally to the baby for six weeks dramatically reduced the MTCT risk by two-thirds.3
Other scientific evidence followed, with the result that prevention strategies are now well established, resulting in a less than 1% risk of MTCT to the baby.
The HIV Service has seen a change in MTCT over the past 30 years. We have directly managed over 200 pregnancies for HIV-positive women (with the babies followed up at Sydney Children’s Hospital), separate to the pregnancies we have been consulted on from other institutions (generally outside of metropolitan Sydney) in the 30 years.
With the knowledge that mother-to-child prevention strategies can only be instituted if a pregnant women is known to be HIV-positive, the service is a strong advocate for antenatal testing (with informed consent and follow up support provided).4
Antenatal testing also has the benefit of allowing women to access medication for their own health care and wellbeing.
Prior to 1994 (the year of PACTG 076), mother-to-child prevention strategies generally consisted of counseling mothers to not breast feed and to avoid invasive obstetric procedures.
Now, we are able to confidently counsel on a broad range strategies; we adopt a multidisciplinary/ multi-facility approach by liaising closely with the woman’s HIV physician, her obstetrician and the labour/postnatal ward staff.
Cohesive care plans are drawn up to ensure the best outcome for delivery and post natal management/follow-up of the babies. We no longer see children infected from MTCT, provided the opportunity exists for implementing prevention strategies.
For all the mothers who have known their HIV status antenatally, mother-to-child prevention strategies have been effective. Children are no longer infected, except in the extremely rare instance where there have been extenuating circumstances and not all strategies have been followed.
However where maternal HIV infection has not been known in the antenatal period, infections have occurred – representing missed opportunities for preventing HIV among children.5
These days, the overwhelming majority of children managed by the HIV service are clinically well, and the social ramifications of the virus have the greatest impact, particularly on the teenagers trying to navigate their way through to adulthood while managing medication, attending clinic, and undergoing regular blood tests.
It is often during the teenage years that medication adherence and overall wellbeing become a seemingly insurmountable challenge for some young people. In a country where there are approximately 80 HIV-positive children, social isolation remains a significant burden for those children.
Spread throughout Australia, they can be aware that there are no other children or young people in their region who are also living with HIV.
Often conscious of the discrimination and ignorance experienced by their parents in the early years, many of these children and young people will not disclose their HIV status to peers, extended family, school or other community members.
Taking daily medication and attending appointments in these circumstances becomes an obvious challenge when school, sports, community and peer commitments become the focus.
Furthermore, a number of young people have lost either one or both parents and/or a sibling to the virus now live in foster care with members of their extended family.
The service has also seen an increase in the number of HIV-positive children arriving in Australia either with their family or as a result of inter-country adoption.
All of the above factors influence the child or young person in a variety of ways and it is for these reasons that the Paediatric HIV Service has established residential support camps (e.g. Camp Goodtime), in an attempt to address some of these challenges.
The camps aim to:
- reduce social isolation
- provide education and information
- facilitate the development of peer support
- provide respite
- provide a therapeutic and recreational environment.
Many families, children and young people report that the greatest benefit of the camps is having the capacity to talk openly with others in a similar situation, not having to keep a secret and being able to be 100% themselves for the several days at camp.
Many of the teens have established and maintained strong connections with each other – forged over five days of intense connection, fun and the shared bond of living with HIV.
Learning strategies to manage their virus, prevention, methods of disclosure and sharing their experiences often provides the participants with the sustenance to manage once they return to their world away from camp.
Funding for these camps have relied completely on the generous support of sponsors, donors and various fundraising events, as the service does not receive government funding for the camps.
In addition, many volunteers generously donate their time yearly to assist the running of the camps. Over $100,000 per year is required for these camps. Without the generous fiscal donations of our sponsors and donors, these camps will not be possible.
An additional challenge now faced by HIV-positive children who are living beyond the first decade of life is their transition to young adulthood, and the ‘transition’ of health care to adult services. The Paediatric HIV service has played a part in transitioning several teenagers to adult services.
Successful transition to adult services requires comprehensive planning from an early age. This can include the provision of support and education to the young person, aimed at establishing an appropriate level of independence in their health care knowledge and management.
Acknowledging the differences in a paediatric setting compared to an adult hospital or sexual health clinic has proven to be important, and care needs to be taken to ensure young people have every opportunity to embrace their transition and not fall through the gaps of the health care system.
The issue of disclosure has become a key focus of discussion both at the camps and via clinical work with the young people who are HIV-positive. Fearful of a negative reaction, most choose not to share this significant piece of personal information with their friends.
As their peer connections become stronger, many teens struggle with decision making regarding whether they should disclose and how to choose whom to disclose to. This is followed by the need to develop strategies for when, how and where to disclose, and how to manage the reaction they may receive.
A challenge at the best of times, disclosure has allowed some teens to receive great support from their peers, whilst others have lost friendships – and potentially their confidence to disclose again.
On a final note, pregnant women with HIV and children with HIV are rarely noted on priority population lists in the HIV sector.
We are currently fortunate that there are only a small number of children living with HIV in Australia, as a result of successful harm reduction approach to intravenous drug use from the early 80s and effective mother-to-child prevention strategies.
However, we must not be complacent about these successes. Appropriate antenatal testing, supports and education must remain important policies to ensure every baby at risk of MTCT has the benefits of prevention strategies, and that children with HIV continue to receive the highest of level of care and in a stigma free environment.
1 Ziegler, J., Cooper, D., Johnson, R., Gold, J. (1985). Postnatal transmission of AIDS-associated retrovirus from mother to infant. Lancet, 1985(1), 896–8.
2 Palasanthiran, P., Ziegler, J., Stewart, G., Stuckey, M., Armstrong, J., Cooper, D., et al. (1993). Breast-feeding during primary maternal human immunodeficiency virus infection and risk of transmission from mother to infant. Journal of Infectious Diseases, 167, 441–4.
3 Connor, E., Sperling, R., Gelber, R., Kiselev, P., Scott, G., O’Sullivan, M., et al. (1994). Reduction of maternal-infant transmission of human immunodeficiency virus type 1 with zidovudine treatment. Pediatric AIDS Clinical Trials Group Protocol 076 Study Group. New England Journal of Medicine, 331, 1173–80.
4 Ziegler, J., Graves, N. (2004). The time to recommend antenatal HIV screening for all pregnant women has arrived. Medical Journal of Australia, 181, 124–5.
5 McDonald, A., Zurynski, Y., Wand H., Giles, M., Elliott, E., Ziegler, J., et al. (2009). Perinatal exposure to HIV among children born in Australia, 1982–2006. Medical Journal of Australia, 190, 416–20.
Angela Miller is Senior Social Worker with the Paediatric HIV Service at Sydney Children’s Hospital.
Associate Professor John Bernard Ziegler is Head the Department of Immunology and Infectious Diseases and of the HIV Service, and is Associate Professor of Paediatrics, University of NSW (UNSW).
Associate Professor Pamela Palasanthiran is Staff Specialist in Infectious Diseases, Sydney Children’s Hospital, Randwick and Conjoint Associate Professor, UNSW.