Umahi Izuchukwu Godwin is the senior technical officer for paediatrics and adolescents at the Elizabeth Glaser Paediatric AIDS Foundation, Nigeria. In this interview with SADE OGUNTOLA, he highlights what Nigeria needs to do to end AIDS among children in Nigeria by 2030.
THE theme for commemorating World AIDS Day 2024 is “Take the rights path: My health, my right!”. So are there issues around inequalities that hinder progress in ending AIDS in Nigeria?
Commendable progress has been made in the HIV response; however, it is not inclusive enough. In 2023, only 57% of children living with HIV were receiving life-saving ART compared with 77% of adults globally. According to our national data, only 35% of children living with HIV know their status versus about 90% of adults, and viral suppression in adults is significantly higher at about 95% than in children at 88%. These highlight the striking inequalities in the progress made.
The key challenges hindering the progress in ending AIDS among children include suboptimal testing and treatment among pregnant and breastfeeding women in Nigeria with a mother-to-child transmission rate of 23% in 2023, low early infant diagnosis coverage of 18%, more than half of the children living with HIV are yet to know their status, and children continue to face low viral load testing and suppression (a viral load test measures the amount of HIV in the body, and viral suppression is a state where a person’s HIV viral load is less than 1000 copies per millilitre of blood).
It is our responsibility to protect children’s right to health, healthy lives, and an AIDS-free future by addressing the key challenges leading to inequalities.
In line with your work on stemming cases of HIV among children in Nigeria, what needs to be done differently to ensure the rights of children are protected as we move towards ending AIDS as a public health threat by 2030?
Children have persistently fallen behind in testing, treatment, and viral suppression. Now is the time to close the gaps by preventing mother-to-child transmission of HIV—improving access to HIV testing and treatment for pregnant and breastfeeding women, including viral suppression involving communities; advancing access to comprehensive prevention services among women; applying available tools and strategies in locating the children and linking them to life-saving ART; and expanding client-centred service delivery models with psychosocial support to ensure viral suppression.
The Elizabeth Glaser Paediatric AIDS Foundation implemented the Program Optimisation Approach—this allowed healthcare workers to use quality improvement principles to improve the health systems. This approach, which was targeted towards identifying and addressing the barriers to early infant diagnosis (EID) in eleven facilities, led to an improvement in EID coverage from 66% to 83%.
With support from the ViiV Healthcare Positive Action and in our fight to ensure all children know their HIV status, we built the capacity of caregivers to support HIV testing of their children using HIV self-testing in Taraba and Rivers states, where 5420 HIV self-tests were distributed to households and 96% of the used self-tests had results reported.
Through this, 21 previously undiagnosed children living with HIV were identified, confirmed, and initiated on life-saving ART. The Foundation hosts Mother Love parties, a community initiative to reach and improve access to HIV testing for pregnant and breastfeeding women—more than 1000 women have been reached and provided with HIV counselling and testing.
In strengthening adherence and optimising care, EGPAF trained expert clients as caregiver mentors and implemented a caregivers’ forum for caregivers of children living with HIV aged zero to nine years. This approach strengthens the critical roles of 141 caregivers as treatment supporters, addressing the daily challenges faced in providing care to their children and promoting quality of care. This innovation was piloted in two health facilities and contributed to improving viral suppression from 88 percent to 93 percent, and it has been scaled up to an additional 5 health facilities.
In our commitment to ending AIDS in children, we must continue to sustain the progress made while learning from the implementation challenges to support our pivot to overcoming the barriers.
Most children still do not have access to ART. What is likely to happen, therefore, to such children?
According to UNAIDS data, about 43 percent of children living with HIV globally were not receiving ART in 2023. While children constituted only 3 percent of people living with HIV in 2023, they accounted for 12 percent of all AIDS-related deaths globally. Without access to life-saving ART, 50 percent of children living with HIV will die before their second birthday, and 80 percent will die before the age of five.
Can you compare the incidence of HIV some years back and now? Are cases on the increase? If yes, why is this so?
The incidence of HIV is on the decline, which underscores the impact of HIV prevention initiatives, including the prevention of mother-to-child transmission of HIV. The number of new HIV infections is an estimated 120,000 children globally in 2023, which is a 38 percent decline from 2015 and a 17 percent decline in 2021.
Despite this, there is slowed progress in preventing new HIV infections in children, and we must critically address the inequalities in access for children.
Social support for children living with HIV is a key determinant of treatment success. Can you criticise social support for children with HIV in Nigeria?
The initiation of children living with HIV on life-saving ART is one of the aspects of the comprehensive management of HIV. To ensure a successful treatment, social support is necessary. Social support entails comprehensive health care, mental health, psychosocial support, nutrition, stress management, etc. Managing HIV affects the physical and psychological health of both children and their caregivers.
Due to staffing shortages, healthcare workers often have to prioritise dispensing ARVs over social support, which is a vital part of successful treatment. This can become a barrier to adherence that, if not identified and addressed properly, can lead to treatment failure. We must advance comprehensive quality service for children living with HIV and their caregivers including social support in our health facilities to enable them to manage HIV well and thrive.
Young people living with HIV prefer to learn their status before 12 and from their caregivers. What has been your experience with disclosure while working in the community?
Disclosure of HIV status can be difficult and emotional for everyone involved, including the healthcare workers. It involves informing a child or adolescent of his/her HIV status, and this can be a challenging and sensitive discussion; hence it occurs over a period of time.
Age-appropriate disclosure is encouraged, and the government has categorised the disclosure phases with age recommendations in the National Guideline for HIV Prevention, Treatment, and Care. Disclosure involves a multi-disciplinary team, and it is not a one-time event but rather a process. The recommendation is for full disclosure to be completed by age 10 to 12 years, followed by post-disclosure evaluation and follow-up.
From our experience, while the benefits of disclosure have been acknowledged, we face disclosure barriers from caregivers who face difficulties initiating disclosure conversations with adolescents—the caregivers might not be comfortable with disclosure or feel the adolescent is not ready or is too young, or have concerns about the adolescent’s emotional health or feel the need to protect the adolescent from stigma and rejection.
We also noticed that due to the proliferation of technology, some adolescents already know their HIV status from the medication they take but are waiting for their caregivers to disclose it to them; in other instances, accidental disclosure occurs, and there are still adolescents above 12 years who are yet to be disclosed to. Disclosure is complex, and our work is centred on building the capacity of healthcare workers to better support the caregivers in disclosure and to provide adequate counselling and support to the caregivers. We have also adopted a peer-to-peer support approach—pairing caregivers with caregivers who have successfully handled a disclosure process or an adolescent peer supporter for guidance.
Viral suppression is important for everyone living with HIV. So what factors are associated with poor viral suppression in children and adolescents in the sites your collaborators are working in?
Attaining and sustaining viral suppression is one of the goals of ART, and it is a critical indicator in measuring HIV treatment success. In our supported health facilities, some of the factors associated with poor viral suppression are non-disclosure, lack of dedicated caregivers and issues with ARV dosage and weight, especially for children, stigma, poor quality of adherence counselling, limited adolescent and youth-friendly services including healthcare workers, concurrent use of herbal preparations, interruption in treatment, etc.
Our team adopted the peer support approach in addressing poor viral suppression through the meaningful involvement of adolescents and caregivers as peer supporters and caregiver mentors, respectively. They provide psychosocial support, treatment literacy, adherence counselling, and home visits to adolescents and caregivers including adolescent- and youth-friendly centres to improve access to adolescent-friendly health services. identify and address factors leading to poor viral suppression.
Nearly half of HIV-positive children attending public health facilities are suffering from chronic undernutrition in conflict-affected zones of Southern Ethiopia, a study claims. What is the situation in Nigeria, particularly with the economic conditions of Nigeria now?
Malnutrition is a major concern among children living with HIV caused by several factors such as food insecurity, poverty, and HIV/AIDS. Malnutrition worsens HIV, and HIV increases the risk of malnutrition. Nigerian researchers in a study on Socio-demographic Determinants of Undernutrition in HIV-Infected Under-Five Children concluded that children living with HIV are vulnerable to malnutrition. Some studies in West Africa and Nigeria also suggest a high prevalence of malnutrition among children living with HIV. With malnutrition, the management of HIV is further complicated.
How easy is the diagnosis of HIV in children, and is the facility for the test available across the country?
Children younger than 18 months are diagnosed using polymerase chain reaction (PCR), which detects the HIV DNA. There are point-of-care PCR and GeneXpert machines spread across the country that perform early infant diagnosis; however, due to the limited number of these machines, Nigeria adopted the hub-and-spoke model for EID referral and testing services. The results are available within 72 hours to weeks depending on several factors, including the supply chain. Antibody detection is recommended for children older than 18 months with accessible rapid test kits at the health facilities following the National HIV rapid testing algorithm, and the results are available almost immediately.
In what ways does HIV affect children?
HIV can affect children in many ways, such as delayed growth and development, increased risk of infections such as tuberculosis, ear infections, etc., malnutrition, neurological effects due to opportunistic infections, and a high chance of AIDS-related mortality. In 2023, children accounted for 12 percent of all AIDS-related deaths globally. Children are also at a greater risk of psychological stress associated with losing their loved ones.
HIV confidentiality laws in Nigeria: How do you see them?
The HIV and AIDS Anti-Discrimination Act, which protects HIV confidentiality, was enacted in 2014. There is ongoing advocacy to domesticate the Anti-Discrimination Act in all states.