by Apiwe Nightingale ‒ HST Cross-site Paediatric and Adolescent Co-ordinator, and Siyabonga Gema – HST Communications Officer
The HIV response in South Africa has achieved great milestones since the early 90s when the country faced what seemed to be ever-increasing HIV infections. Among the gains made is the ground-breaking research that led to the successful prevention of mother-to-child HIV transmission through offering antiretroviral therapy (ART) to pregnant women. Another shift was the introduction of ART for children living with HIV.
Many South Africans still remember the image of a young and brave Nkosi Johnson, who publicly spoke about his HIV status and was widely regarded as a symbol of hope. A lot of work has been done since then to ramp up access to treatment and care for children and adolescents living with HIV (C/ALHIV), although challenges persist and there is still room for major change.
HST's Cross-site Paediatric and Adolescent Co-ordinator, Apiwe Nightingale, sheds light on paediatric ART interventions.
Why is there a need for a programmatic paediatric ART intervention in our communities? Is this need urgent?
South Africa launched the world's largest ART programme in April 2004, offered to all people as soon as possible after their HIV-positive diagnosis.
It's been 20 years since the introduction of the ART programme, but children and adolescents living with HIV (C/ALHIV) have been left behind in case-finding, treatment initiation and viral load suppression to reach the UNAIDS 95-95-95 targets, especially when compared with the adult HIV care continuum in Kwazulu-Natal, and the country as a whole.
Reaching children in clinics and hospitals is still a challenge, as many parents and caregivers do not bring their children for scheduled immunisation visits, and when children are brought to the facility, staff may miss testing or checking their HIV status for initiation or re-initiation on ART.
Among other reasons for children aged five years and older not coming to the clinics during weekdays are that they are attending school, or the child is no longer staying with the parent and the caregiver is not aware of the child's HIV status. This leads to poor continuity of care, which hinders viral suppression.
Please share some background on Health Systems Trust (HST)'s involvement in providing paediatric ART services
Since the start of the SA SURE programme in 2012, HST has been supporting HIV services for children and adults in the facilities. In previous years, HST employed Paediatric Case Managers, whose responsibility was to provide direct services in the facilities. Our support approach then changed, as we prioritised the need to capacitate facility staff through technical assistance to ensure sustainability of paediatric HIV services by the Department of Health (DoH) beyond the life of the project.
We have seconded a team to support the Provincial Department of Health in policy development for improved paediatric and adolescent HIV services. Through our pharmaceutical programme, we have provided extensive support in driving the new mandate of transitioning children and adolescents to the new Dolutegravir (DTG)-based regimen.
Currently, HST provides comprehensive support for the Paediatric ART programme, rendered at various levels of the health system.
At facility and community level, the DREAMS programme for adolescents and young people promotes integrated prevention of teenage pregnancy and HIV. Our SA SURE and Unfinished Business project teams provide technical assistance through training, supervision and mentoring for facility clinicians on disclosure, psychosocial support and caregiver support.
Our Peer Mentors, employed under the Youth Employment Services (YES) programme, are allocated to facilities to establish and facilitate support groups for teenage mothers, and liaise with the facility/community teams for HIV testing of children through index contact testing services. In high-burden facilities, staff such as Nurse Clinicians and Data Capturers are allocated to provide direct service delivery for the Paediatric ART programme.
At district and provincial levels, HST staff work closely with the DoH and other stakeholders on implementing paediatric HIV care and treatment, including psychosocial support. I am one of SA SURE PRO's two Cross-site Paediatric and Adolescent Co-ordinators, and we are part of the technical team serving the UNAIDS Global Alliance to End AIDS in Children. The main objective of the Global Alliance is to work closely with the District and Provincial DoH to ensure that four intervention pillars are implemented:
- early testing,
- diagnosis and treatment;
- optimising and continuing treatment for pregnant and breastfeeding women, and preventing and detecting HIV among this group;
- and more broadly, addressing rights, gender equality, and the social and structural barriers that hinder access to HIV services.
Through the US Centers for Disease Control and Prevention (CDC), President's Emergency Plan for AIDS Relief (PEPFAR) has provided HST with an additional grant for the Livelihood & Food Security Technical Assistance (LIFT) programme, which focuses on children and adolescents living with HIV. The grant was awarded in October 2023, and from January to February 2024, we set about drafting our LIFT workplan. Since our implementation of LIFT activities began in March, we have seen improvements in facilities.
Do you generally find that ART programmes for children are widely supported or are there still gaps?
Although the ART programme for children is well supported, there are some gaps and challenges that have been identified jointly by the SA SURE PRO and DoH teams.
Because of legal and ethical safeguards relating to HIV testing and counselling for children and adolescents, they depend on their caregivers or parents for access to HIV testing and treatment engagement. For children younger than 12 years, informed consent must be provided by a parent, caregiver or a provincial head of the Department of Social Development. However, in real-life situations, facility staff find that some parents are not staying with their children, and the caregivers are unaware of the child's HIV status and therefore cannot provide the required consent for HIV testing.
Some caregivers relocate to other provinces to seek or take up work opportunities, which means that they do not visit the facilities to collect their children's medication and for the child's clinical review. This has a severe impact on the child's continuity of care and overall health.
Many children are unaware of their own HIV status, and parents and caregivers are not equipped to disclose it to their children. Our Psychosocial Advisors have special skills for guiding HIV disclosure.
What gains have been made in providing ART to children?
In KwaZulu-Natal, we have not reached the UNAIDS target for ART coverage among children, but our data show a positive performance in the HIV care and treatment cascade for children.
Through capacity-building in our four supported districts, we have supervised, mentored and trained clinic and hospital staff in the management of C/ALHIV.
Critically, there has been a marked increase of paediatric DTG uptake over the past six months, with more than 60% of children having been transitioned to this treatment regimen. This is impressive, because it has been achieved despite stock-outs of Paediatric DTG for several days.
Take us through some of the challenges in this programme. What, in your view, causes these challenges?
The challenges in implementing the Maternal and Child Health programme are not different from those affecting the Adult ART programme. Currently, the most dominant one for children are low case-finding rates.
With children not coming to the facilities, and implementation of the index contact testing approach not yielding optimal results, HIV testing in schools would be a helpful intervention, but the legal guidelines for implementers prohibit this. Another opportunity would be through integration of HIV testing within the immunisation schedule, but this is currently not in place.
The causes of these challenges are dynamic and relate to individual circumstances, but the major factors that I have observed since I started in the programme are structural, such as clients having to travel long distances to health facilities, treatment shortages, and the HIV disclosure issues; and in communities, there is a lack of social mobilisation for C/ALHIV, and limited or no mobile services focusing on HIV testing and care for children and adolescents.
How can we empower communities to be actively involved and thereby support the work that you do?
Our stakeholder engagement assists in empowering the communities to be involved and actively support the programme for C/ALHIV. Involving community leaders in outreach campaigns like the School Health programme is also beneficial. Community members and organisations can rally support for increased uptake of paediatric DTG. It's also important to ensure that we maintain strong links with the Department of Social Development's Social Workers so that children and adolescents receive the psychosocial care that they need.
What role does credible information-sharing play in promoting the community's buy-in and raising awareness?
Sharing reliable information through health education and health promotion plays a very big role in securing community buy-in, and in turn, improved knowledge empowers individuals and families in taking responsibility for their health and wellbeing. Awareness campaigns centred on various key health topics encourage the community to participate in targeted activities, and the information they receive via social media, dialogues and other communication platforms must be accurate and readable.
For more information on paediatric and adolescent HIV testing and treatment, please visit the Health Systems Trust website at www.hst.org.za – SA SURE PRO and www.hst.org.za – Unfinished Business or e-mail us on hst@hst.org.za.