What is the Coalition for Children Affected by AIDS?

The Coalition for Children Affected by AIDS (The Coalition) is a unique group of 25 global donors, United Nations agencies, non-governmental agencies, and independent scientific experts as well as Ambassadors who are directly affected by the disease. We support the rights of children (aged 0-18) infected with HIV and AIDS; those at risk of infection; and those affected by the social and economic impacts of others close to them having the disease.

What is The Coalition seeking to achieve?

We want to enable all children affected by HIV and AIDS to survive and thrive at home, school and in their communities. We believe this can only be achieved by the HIV sector and broader international development sectors working together to enable more children and their caregivers to access holistic, family-based, integrated support across their life-cycle, which combines HIV services with social and economic support. In particular:

  • Donors must expand HIV funding parameters, time-frames and programmes to include a variety of biomedical, social and economic interventions. In particular, social protection and early childhood development support is critical. They must also look beyond direct service to fund crucial operating activities (e.g. advocacy, joint planning, information sharing, case management, staffing, systems and referral mechanisms).
  • All stakeholders must champion comprehensive national strategies for children affected by HIV/AIDS. Such plans should combine social protection and early childhood protection with HIV services. Programs and services should be delivered in an integrated, holistic, family-based manner that provides age-specific support.
  • Donors, governments and implementers must provide more resources and decision-making powers to communities, community-based organisations, children and families.
  • The HIV sector must collaborate with counter-parts in social and economic development sectors to deliver holistic programming for children affected by HIV /AIDS. The HIV sector has a history of activism, a wealth of evidence and expertise, and well-organised networks with which to harness the momentum around the SDGs.
  • Researchers must generate further evidence on what holistic interventions work best to support children affected by HIV/AIDS, allowing them to survive and thrive at all ages.

What is needed to support children affected by HIV/AIDS?

The Coalition has identified several actions vital to ending HIV and AIDS in children and to addressing the epidemic’s broader impacts on this vulnerable population:

  • New approaches are needed to reach marginalised children and families. “Business as usual” will not work for those who remain vulnerable to, and disproportionally affected by, the disease.
  • Reaching the many children and adolescents that are beyond the reach of mainstream services. They are not being reached because they are too far away; too poor; too stigmatised and discriminated against; and too psychologically distressed.
  • Only by combining HIV services with social and economic support can we ensure marginalised children and adolescents receive care.
  • We need to start early. What happens to a child during pregnancy and in the first 1,000 days determines their path through life.
  • We need to focus resources at the family and community level as this is where change happens for children. Families and communities also are the lifeline to those currently beyond the reach of formal clinics.

What is wrong with the way that children are currently being supported?

Despite enormous strides made in the fight against HIV/AIDS globally, there is a significant variance between adults and children in the treatment response, with children lagging far behind. As arguably the most vulnerable population, unable to advocate on their own behalf, children have not received enough attention, research, and resources. In particular, those children experiencing extreme poverty and social exclusion are unable to access much of the HIV services currently available. And the psycho-social barriers facing children affected by HIV/AIDS and their caregivers have not been sufficiently addressed.

Can you give examples of the problems faced by children whose parents are HIV positive?

  • Poverty, including lack of access to services, poor environmental conditions, inadequate material supplies, social instability, and overworked and demoralised caregivers, impacts both a child’s physical and emotional well being.
  • Stigma against children with HIV, or with parents who are HIV positive, is leaving their children without education, health or protection. This is particularly true for children of key populations – sex workers, people who use drugs, transgender people, gay men and other men who have sex with men. Broader social and economic development interventions, including those seeking to prevent and address the affects of HIV/AIDS, are not reaching these children. And targeted interventions for key populations are not addressing the needs of their children.
  • Developmental delays are more likely in infants of HIV positive parents. This is partly due to the biomedical impact of the disease during pregnancy, but also because their parents/caregivers are more likely to struggle with poverty, mental health and the physical impact of being HIV positive themselves.

Why is it so important to prioritise children in the global HIV/AIDS response at this particular moment in time?

The Sustainable Development Goals provide a unique opportunity to reach all children affected by HIV/AIDS. These goals tackle the broader social and economic barriers faced by marginalised children, require different sectors to work together and prioritise those being left behind. But we need to act with extreme urgency in order to reach the 2030 deadlines.

Where is the need greatest?

In eastern and southern Africa — the regions of the world with the highest levels of HIV prevalence — meeting the needs of children and adolescents infected and affected by HIV, as well as their families and others who help to care for them, is critical.

In addition, the children of key populations affected by HIV/AIDS are being overlooked and excluded. They face a double burden: both the affects of HIV/AIDS and entrenched exclusion by way of association with their parents. They are a priority for any organisation seeking equitable development both within and beyond the HIV and AIDS sector.

Who are the Coalition’s members?

Our Members are leaders in their fields who have dedicated their careers to understanding and improving the lives of children affected by HIV/AIDS. Each has extensive technical knowledge, is influential at the global level, and is deeply committed. They have all joined the Coalition to strengthen our collective voice in calling for more to be done to enable children affected by HIV to realise their full potential. A full list of our members is available on our website: www.childrenandhiv.org

When and why was the Coalition established?

The Coalition was created because children were being left behind in the response to the HIV/AIDS epidemic. In 2004, frustrated at the lack of attention paid to children, a group of global health leaders — the Coalition’s founding members — came together to drive increased focus to this extremely vulnerable population.

What has the Coalition achieved since it was established?

For nearly two decades, the Coalition has brought funders and technical experts together to advocate for the best policy, research, and programs for children. We see the result of our work in new commitments to children in global policies, strategies and programs. For example:

Since 2008, the Coalition and The Teresa Group have co-hosted a bi-annual global Symposium on children and HIV in the days leading up to the international AIDs conference.

Regularly hosting global meetings to establish technical best practice, including around HIV-sensitive care force planning for children, early interventions for children in HIV-exposed families, community action to end pediatric HIV, and psychosocial support for children affected by HIV/AIDS.

Producing a range of technical tools intended to support effective programming, including how to assist care workers in managing ethical dilemmas when providing services to children and families of the most stigmatized and marginalized populations.

Advocating for changes in global policy and practice for which we produce briefings, including around the children of key populations, equity, and psycho-social care.

Promoting research into children affected by the epidemic. We supported a cohort study by University College London and Stellenbosch University, and conducted our own scoping exercise into the children of key populations. We also co-host with International AIDS Society a bi-annual Prize for Excellence in Research Related to the Needs of Children Affected by AIDS.

In what countries does the Coalition work?

The Coalition does not operate programmes in any country. Instead, we support global research, advocacy and programme and policy development that will benefit all countries. However, since HIV prevalence is highest in eastern and southern Africa, much of our work is focused on meeting the needs of children and adolescents in this region.