Act Now! Champion children and adolescents in PEPFAR’s consultation on its new strategy

The development of PEPFAR’s new strategy, ‘Vision 2025,’ is a critical opportunity to champion children and adolescents affected by HIV.  PEPFAR is inviting submissions online until 31st August, 5pm ET.  

Below is the submission of the Coalition for Children Affected by AIDS1 to PEPFAR’s consultation questions.  It is the consensus view of Coalition Members – 29 global thought leaders from 16 organisations operating around the world, including young people and caregivers directly affected by HIV.  And it is based on scientific and programmatic evidence on what is needed and what works.

We encourage all our partners to echo this language in their own submissions to PEPFAR and to disseminate them to others.  Let’s speak with one strong voice for children and adolescents. 

  1. The PEPFAR Strategy: Vision 2025 is aligned to the Sustainable Development Goals and Global AIDS Strategy. Are the draft PEPFAR Strategy goals and objectives the priority areas for the program to address? Are any missing or in need of refinement?

There must be specific strategic goals and objectives addressing children, adolescents and HIV.

We cannot control the AIDS epidemic without addressing the needs of children and adolescents. Their ability to start free and stay free of HIV is the cornerstone of ending AIDS by 2030. Preventing mother-to-child transmission, blocking pathways to HIV infection in adolescence and adulthood, increasing access to optimal treatment and supressing the viral load of children and adolescents already infected are critical for stopping this epidemic in its tracks. Without this, HIV will persist indefinitely. Start early. What happens to children and adolescents determines their path through life. A life-cycle approach is essential for delivering transformative change.

Ending inequality means meeting the needs of children and adolescents left behind. This includes adolescent parents affected by HIV and their children2 , the children of key populations3 and other groups facing social and structural exclusion. Moreover, children lag far behind adults in terms of HIV testing and treatment – and that gap is widening. Two fifths of all children born with HIV in 2020 went undiagnosed and two thirds were not treated4. While children represent only 5% of people living with HIV, they account for 15% of AIDS-related deaths.

Without refocusing on vulnerable children and adolescents, we are on track for a hollow victory in the fight against AIDS. The 95-95-95 targets may be met whilst children and adolescents are left behind. This is a gross violation of their rights. PEPFAR’s political leadership extends far beyond the program and shapes the priorities of others key stakeholders. By overtly committing to children and adolescents, PEPFAR will send a strong signal that they matter.

  1. What does the PEPFAR program look like at sustained epidemic control of HIV? What are the main threats to maintaining epidemic control of HIV?

Sustained epidemic control of HIV can only be achieved if we refocus on children and adolescents left behind. This includes, adolescent parents affected by HIV and their children5 , the children of key populations6, those impacted by poverty and broader social and structural exclusion. Building an AIDS-free generation means equipping them with the skills, resources and opportunities to prevent and respond to the disease.

Sustained epidemic control also requires far greater collaboration with other sectors. Children, adolescents and other ‘last mile’ populations need holistic support in order to prevent and treat HIV. Tackling HIV goes hand in hand with addressing gender-based violence and violence against children, poverty, stigma and discrimination, poor mental health, gender inequality, and access to education. The days of working in siloes are over. Combining biomedical HIV services with social protection, economic empowerment, mental health services, and support for nurturing care are all proven game changers in HIV prevention and treatment in children and adolescents. This has the dual benefit of providing vulnerable children and adolescent with the support they need whilst simultaneously tackling the underlying drivers of the HIV. As DREAMS has shown us, intersectoral collaboration is a cost-effective way to achieve HIV targets as well as many other outcomes. This approach must now be scaled up and applied to all vulnerable children and adolescents.

Sustained epidemic control means creating an enabling environment that serves the most vulnerable. Clinics and communities must be supported to work together. Laws, policies and social norms must prioritise and support excluded children, adolescents and their caregivers. And they must be supported to take leadership roles in the design and delivery of services and to challenge stigma and discrimination against them.

PEPFAR’s strategy must incentive collaboration – between facilities and communities as well as between different ministries and sectors.  This includes supporting government ministries and implementers to develop data sharing agreements that allow the confidential sharing of information and support holistic client management and access to services, as well as supporting regular dialogue.  Any point of service should be a window of holistic support for a child or adolescent.

Sustained epidemic control means maximising biomedical innovation for children and adolescents. Dolutegravir, long-acting PrEP, early infant diagnosis, point of care testing, and family-based index testing are all proven innovations that need to be scaled up. Administering PrEP amongst pregnant HIV negative women is another important innovation since 30-40% of all mother to child transmission is driven by incident HIV during pregnancy.

Sustained epidemic control means knowing what is happening to children and adolescents and acting upon it. They must be incorporated into PEPFAR’s data collection and decision-making processes, including in the PHIAs.

  1. PEPFAR continues to achieve progress, but COVID-19 has short- and long-term effects.  How should PEPFAR plan over the next five years to mitigate the effects of COVID-19 and accelerate toward reaching sustainable, equitable, and resilient epidemic control? How should PEPFAR continue to leverage its platform for broader health outcomes?

COVID-19 reinforces the need for a holistic approach to ending AIDS. This new pandemic exacerbates inequalities, leaving excluded children and adolescents even further behind. Levels of poverty, unplanned teen pregnancy, malnutrition, violence against children, developmental delays, gender-based violence, school drop-out, poor mental health, and orphanhood have all worsened since this new pandemic began. This, in turn, creates additional challenges around preventing HIV infection, retention and adherence. We can expect a large number of children and adolescents missing out on their education and a surge in teenage pregnancies – both of which greatly impact on HIV epidemic control, now and in the long term. Furthermore, those hardest hit by HIV will be unlikely to access COVID-19 vaccines for the medium to long term, causing on-going service disruptions.

Virtual service provision – whilst important – also has its limitations for excluded children and adolescents affected by HIV. COVID-19 has jump-started the use of virtual service provision much of which has generated very positive outcomes. This includes online communities of support, which have helped improve retention and adherence amongst young people. However, many children and adolescents affected by poverty do not have access to a device, wifi, data packages, electricity, books or other equipment required for virtual service provision.3 And virtual service provision has led to some young people having to disclose their HIV status or association with an excluded population, causing broader safeguarding risks.

  1. We have the technical tools to end AIDS as a pandemic, but inequities, stigma, discrimination, and ineffective policies make our collective job more difficult. What specific strategies should PEPFAR pursue to better confront this challenge?

Tackling social and economic barriers goes hand-in-hand with HIV prevention and treatment. Without this no system – no matter how capacitated – will reach those that need it most. We strongly recommend that PEPFAR make this explicit in its strategy. It includes, for example, cash transfers and other forms of social protection, economic empowerment, support for nurturing care and early childhood development, mental wellbeing, education, comprehensive sexuality education, gender equality and tackling violence against women and children. It also means building the capacity of excluded children, adolescents and their caregivers to lead in the design and delivery of strategies and supports and to challenge stigma and discrimination against them. And supporting efforts to identify children and adolescents at risk of or living with HIV and linking support provided between clinics and communities. All these approaches have a strong evidence base behind them showing how they improve HIV outcomes. We have the evidence, we know what works, what we need now is leadership.