Unearthing solutions: using data to reach children left behind in the AIDS response


Corinna Csáky and Jennifer Carpenter


After nearly 40 years of tireless activism, advocacy, funding and research, HIV is no longer the devastating death sentence it once was. Many people are living longer with the disease, many HIV positive mothers are not passing on the disease to their babies, and millions more adolescents are learning how to prevent HIV infection. We must certainly celebrate these life-saving and life altering milestones. But we must also be candid about where progress is lagging – and why.

Nearly 400 new infections in children happen globally every single day. Yes – the world’s most vulnerable, and arguably voiceless are experiencing a rise in HIV infection rates. In sub-Saharan Africa, the number is nearly double the global rate, with 720 adolescents infected daily. In fact, AIDS is the leading cause of death among this age group.

Many of these children and adolescents are outside the reach of conventional programming. They are too poor, too socially excluded, or too far away to access services or to stay on treatment. They include children from ethnic and religious minorities; those with disabilities; children who have lost one or both parents; or those whose parents are sex workers or drug users. We will not meet their needs, nor eliminate the disease as a whole, without changing how we operate.

Reaching all children requires new approaches. Yet, there are already examples from the field that we know are highly effective. As is so often the case, those on the frontlines of the fight are leading the way in developing innovative solutions. Recently, the organisation Funders Concerned About AIDS released a report entitled Last mile funding: improving practice in philanthropic funding of community action on AIDS. It rightly points out that:

‘Communities are at the forefront of the global AIDS response. Key innovations, breakthroughs and much of the progress on the ground would not have happened without their involvement. Yet, funding for communities remains sporadic, limited and hampered by structural challenges.’

This lack of resources is hindering crucial documentation and sharing of the remarkable innovations already taking place.

To reach all children affected by HIV, we must go beyond biomedical solutions, removing the social and economic barriers between those excluded and the HIV services they most ardently need. We must build their resilience and that of their families to overcome the impacts of the disease.

Social protection – such as cash/in-kind transfers, social insurance, social services – is vital in this regard.  It is already proven to reduce the risk of HIV infection (UNAIDS, 2018).  What is far less documented, is the impact of social protection on bringing those living on the fringes of society into the reach of HIV testing, treatment and care. Anecdotal evidence suggests that communities have long been providing extremely vulnerable children and their families with a range of social protection supports alongside HIV services. But these efforts have gone undocumented and unnoticed.

As a result, global policy, programming and funding decision makers remain unaware of what works and are unable to deliver the most effective interventions at scale. A lack of evidence is holding back investment in effective solutions for vulnerable children.

There are actions currently underway to address this data gap. For example, a new Positive Action Challenge —Reaching All Children— led by ViiV Healthcare and the Coalition for Children Affected by AIDS aims to build the evidence base by highlighting scientific findings and case studies on the impact of social protection. In so doing, the Challenge will drive greater attention towards proven models of integrated programming. Now in its initial phase, the Challenge is soliciting organisations and researchers to submit work demonstrating how social protection can lead to increased HIV testing and treatment among children.

Anecdotal evidence suggests that effective solutions already exist. And efforts like the Reaching All Children Challenge will help to identify them and bring them to scale. But this is just the start. Data is the key and we need more of it. With it, we will be well positioned to ensure more children have an opportunity to survive overcome or even avoid HIV and its impacts.

Corinna Csaky is manager at the The Coalition for Children Affected by AIDS
Jennifer Carpenter leads Positive Action Innovations & Partnerships at ViiV Healthcare

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