The many thousands of children with HIV lie at the heart of everything ECHO does.

The ECHO programme has dedicated the last 10 years to improving the lives of children with HIV through improved diagnosis and treatment. Our focus is on delivering real-world change through the development of the best in multidisciplinary prevention, diagnostic and treatment services that place children at the heart of the process while ensuring that access to high quality care can be scaled-up and rolled out as widely as possible.

ECHO’s multidisciplinary approach to paediatric HIV complements clinical personnel with psychologists, social workers, dieticians, pharmacists and lay counselors. We also value our close liaison with allied health professionals including physiotherapists, speech therapists and hearing therapists who can play a vital role in the care of our children.

Since the foundation of paediatric HIV outpatient services at the academic hospitals of the Wits University in Johannesburg in the mid 1990s, ECHO has been involved in the scaling-up of prevention and care services for HIV-infected kids and their families at these original sites and at many other sites in Gauteng, Limpopo and Northwest Provinces. More than 9 000 children have started antiretroviral at ECHO supported sites.

This has been achieved through the strong partnership with Provincial and National Department of Health alongside the ongoing support of several donors and private philanthropists who, through their generosity and foresight, have enabled the organization to achieve its goals.

Through our partnership with the Reproductive Health HIV and Research Unit (RHRU) and the Institute for Healthcare Improvement (IHI) we have been able to expand the provision of holistic services and quality improvement methodology in paediatric HIV beyond the traditional hospital setting, offering community-based care in Gauteng and our neighbouring rural provinces.

The work of the organization is also supported by grants from international agencies such as the President’s Emergency Plan for AIDS Relief (PEPFAR), the Elizabeth Glaser Pediatric AIDS Foundation, Rockefeller Brothers Foundation, UNICEF, DFID and local corporate sponsors such as Discovery and Roche pharmaceuticals. UNICEF.

Continuing high quality research remains essential to address the HIV crisis, and is a fundamental ECHO activity, with ECHO Clinics involved in a number of research projects.

Dr Tammy Meyers is the Principle Investigator for the National Institutes for Health (NIH) funded International Maternal Pediatric Adolescent AIDS Clinical Trial (IMPAACT) trial site in Johannesburg at Chris Hani Baragwanath Hospital, a site of the Wits HIV Research Unit headed by Dr Ian Sanne.

The Harriet Shezi site at Chris Hani Baragwanath Hospital was among the first international sites to enroll international paediatric patients into trials and was selected as a research site in 2000. As a result, this has given the site the opportunity to develop a sound research infrastructure, and a research team with renowned excellence, members of whom are called upon to train other sites in resource-limited settings.

Several IMPAACT trials are ongoing in ECHO sites at present, with the expectation that several more will open within the next year.

As part of ECHO’s commitment to research in collaboration with Prof Louise Kuhn and Dr Elaine Abrams of Columbia University, we have developed the Nevirapine (NVP) Resistance Study (NEVEREST) which commenced at Coronation in April 2004. The purpose of the study is to determine whether transient resistance to Nevirapine caused by the use of this drug to prevent mother-to-child transmission of HIV can result in treatment failure when the same drug is used to treat mothers and children who require treatment for HIV/AIDS.

The first stage of the NEVEREST study, Protocol 1, involved HIV-positive mothers needing HAART, who had given birth between 18 and 36 months before starting the trial. We enrolled 164 women, approximately half had been exposed to NVP as part of PMTCT and the other half had never been exposed to NVP. We followed these women up for 2 years.

Protocol 2 was started in the beginning of 2005. HIV positive children needing HAART who had been exposed to NVP as part of PMTCT and who were 2 years or younger at the time of enrollment were started on a PI based regimen. When they had been virally suppressed for at least 3 months and other criteria were met, they were randomized to either continue on a PI-based regimen or to change to an NVP-based regimen. These children are still being followed up. Those not virally suppressed by 1 year of treatment were transferred to their nearest ARV treatment centre.

Provisional results for NEVEREST 1 have been presented and will soon be published; NEVEREST 2 has been fully enrolled and continues to follow-up children.

The ECHO team also works with a wide variety of other research organizations. For example, the research team at Harriet Shezi Children’s Clinic also participates in multicentre pharmaceutical industry trials, helping in the development of new generations of HIV treatments, and collaborates on research protocols locally, both within Wits University and with other university centres.

Finally, ECHO contributes to the International Epidemiological Databases to Evaluate AIDS (IeDEA) network which strives to assess HIV programs for both adults and children from a regional and global perspective and is recognized as one of the largest contributors in the field.

Increased emphasis is being placed on encouraging and equipping internal staff to conduct their own research projects and several staff are enrolling in masters programmes and involved in writing papers for scientific journals and presentations at international conferences.

Early infant diagnosis is essential for both prevention and treatment strategies to address the paediatric HIV epidemic. Knowing the HIV status of an infant is important for monitoring the efficacy of the Prevention of Mother to Child Transmission (PMTCT) programme and in identifying HIV-infected infants early in life for appropriate treatment.

However, early infant diagnosis requires more complex and costly detection methods (e.g. HIV DNA PCR) than those generally used in adults (HIV ELISA and rapid tests).

From 2001, under the leadership of Prof. Gayle Sherman, ECHO undertook studies to establish evidence-based testing algorithms for infants that would be accurate and affordable in a South African setting. These studies looked at both clinical (including psychosocial) and laboratory-based approaches to infant diagnosis, culminating in the Department of Health approving a policy of offering all HIV-exposed infants a single HIV DNA PCR test at 6-weeks of age. This approach was later adopted by the World Health Organization.

The next challenge was to create laboratory and clinical capacity to perform early infant diagnosis. This involved studies to improve laboratory automation, optimize the use of dried blood spots for HIV testing to overcome the lack of skills available for venesecting young babies and the development of standard operating procedures (click to download 300Kb PDF) for blood collection and specimen handling. A training program to educate primary healthcare workers on early infant diagnosis (click to download 200Kb PDF) was developed. To date over 2,000 nurses have been trained.

HIV DNA PCR tests performed in South Africa have increased dramatically from about 14,000 in 2004 to 85,000 in 2007 reaching approximately 35% of the target population of approximately 300,000 HIV-exposed babies born each year 17.

Work to increase access to an accurate early diagnostic service continues.

In line with our holistic approach to patient care, we have a comprehensive psychosocial programme designed to support families and children that are affected and infected by HIV/AIDS.

Under the guidance of Dr. Marnie Vujovic, a clinical psychologist with considerable experience in community work, the programme has expanded to include clinic and community-based support groups for caregivers, children and adolescents; a schools outreach initiative aimed at primary and secondary school learners; and holiday programmes for young patients.

Another ECHO initiative has been the introduction of a sensory stimulation group. This encourages the caregivers of children under the age of three-years to focus on the developmental needs of their children and builds coping skills amongst the young mothers in the group.
With the impact of successful ART therapy starting to be seen, the number of adolescents attending ECHO clinics is expected to increase dramatically over the next few years. As a result, our attention is increasingly focused on the provision of youth-friendly adolescent services, including peer-counselor training and parenting workshops.

An adolescent clinic service has been piloted at the Harriet Shezi Children’s Clinic, which has more than 100 HIV-positive adolescents in active care. Adolescent services are being scaled up at all the sites where we operate and, a dedicated weekly adolescent clinic at Coronation Hospital, now also cares for some 300 adolescents.

The ECHO counselor training programme has been particularly successful, ensuring that counseling skills are developed and broadened through participation in a variety of workshops offering training in areas such as the expressive arts. In addition, the development of materials such as a paediatric HIV counselor training package reflects on-going concern with the need to build counselor skills around paediatric issues such as disclosure, adherence, loss and bereavement and teen sexuality.

All those involved in ECHO are acutely aware that the appropriate transfer of knowledge and skills is a central component to achieving our goals.

ECHO is involved in the training of a large number and variety of healthcare workers. These range from medical students at the University of the Witwatersrand, to postgraduate students in paediatrics and public health. We are also responsible for the theoretical and practical components of the paediatric HIV curriculum for the Graduate Entry Medical Programme (GEMP) at Wits University. The organization provides much of the paediatric components of the Gauteng and RHRU HIV courses.

As a leader in paediatric HIV and AIDS management, ECHO has established a dedicated multidisciplinary training team who are able to assess, analyze and address any lack of appropriate information, competence or experience in HIV care. This team provides training to a large number of healthcare workers, including counselors, primary health care nurses, dieticians, pharmacists, data capturers, facility managers and doctors.

We are committed to enhancing the knowledge and skills of our own staff. There is an ongoing internal continued medical education programme and staff are encouraged and supported internally to study for diplomas in HIV medicine and Child Health.

We believe that we must all work together if we are to deal with the issues we currently face in HIV prevention and care. As a result, our staff is always happy to offer their experience and technical knowledge to support others.

As a result of our commitment to offering assistance to other groups, members of ECHO have been involved in the development of guidelines and have sat on committees at regional and national governmental level, as well as enjoying the privilege of working with the World Health Organization (WHO) on a number of projects.

Dr Tammy Meyers coordinated the development of the 2004 South African Guidelines for the management of the HIV-infected child, and continues to provide technical advice on updating of guidelines. Tammy also serves as a technical advisor to the WHO guidelines review committee, which continues to update and revise paediatric HIV guidelines on an ongoing basis.

Dr Harry Moultrie is a member of the WHO working group reviewing and developing recommendations on paediatric ART Fixed Dose Combinations, as well as the Gauteng Department of Health’s HIV Information Systems task team, which is in the process of reviewing health information systems to support the ARV role-out. He also coordinated and wrote a submission on the third draft of the National Strategic Plan (NSP) for South Africa 2006–2011 and was subsequently appointed by the Director General to the task team finalizing the NSP.

Several members of ECHO, including Dr Meyers, Dr Egbers and Carey Harman, have been involved in the development and piloting of the South African and WHO guidelines for the nutritional support of HIV infected children. The national and international technical assistance provided by Prof Sherman and Dr Coovadia is covered under the Paediatric HIV Diagnosis Syndicate.

Dr Coovadia chaired the National Department of Health’s Task Team on the revision of the PMTCT guidelines. He oversaw this process in September to November 2007, culminating in the new PMTCT protocol in South Africa announced in February 2008. He continues to be a technical consultant to the department.

Dr Coovadia also represents children as the one of the three sector representatives on the high-level structure of SANAC (South African National AIDS Council). As part of his involvement with all structures in SANAC he is also the co-convener of the important Treatment Care and Support Technical Task Team.

The Gauteng Provincial Department of Health has looked towards technical assistance for the implementation of the revised new PMTCT policy and as such Dr Coovadia is a co-convener of the Gauteng PMTCT Working group that meets monthly at Coronation Women and Children Hospital. This committee plays a vital role in the scale-up of PMTCT around the province and will increasingly be ensuring infant diagnosis is also scaled up through the chair of the Infant Diagnosis subcommittee, Prof Gayle Sherman.

Future Directions (the child within the family)

ECHO has grown rapidly within the last three years and we are always looking for new ways to continue to strengthen our position as a leader in the field of paediatric HIV prevention, care and treatment service delivery.

For example, in 2006 the revitalisation of the Chris Hani Baragwanath Hospital led to the demolition of the old Harriet Shezi building. The Harriet Shezi clinic has moved into a temporary home in a prefabricated building that is also scheduled for demolition in the next few years.

Seeking to utilise the opportunity to provide integrated family-based services at the hospital, Harriet Shezi Children’s Clinic together with the adult HIV clinic and the Tuberculosis Care Centre developed a joint proposal for a new family HIV-TB- for the Chris Hani Baragwanath Hospital which will provide family-centred care. A team of project managers, architects, engineers and builders has been formed, plans have been drawn up and fundraising is underway for the new centre, which it is believed will be a world first. This unit will become a renowned training and research facility and as the family-based care model is refined, it is likely that this type of service will be replicated at other services.