Turning Up the Volume on Children & Families Living with HIV and AIDS

Joop Rubens, Kenya 2016
This post was authored by Florence Anam, Advocacy & Communications Manager, International Community of Women Living with HIV

This article was written by Florence Anam, Advocacy & Communications Manager for the International Community of Women Living with HIV 

No arguments are more persuasive in influencing global HIV and AIDS policy and funding decisions than those of the children and families affected by the disease. After all, these individuals know best the challenges they face and the solutions most likely to work for them. But they must be empowered in order to effect real change.

If we are to end the epidemic as a public health threat by the year 2030, we must ensure that the voices of those affected by HIV and AIDS are heard.

The Sauti Skika Example

In many countries, children and youth have already organized themselves into networks to raise local awareness of HIV and tackle the stigma that surrounds it. Similarly, mothers, fathers and grandparents have created community-based organizations to provide emotional and practical support to parents, caregivers and children affected by AIDS. These networks also help to champion the rights of those living with HIV as decisions that affect them — related to treatment, care, laws, policies and funding — are made.

The “Sauti Skika” (“Amplify our Voice”) movement in Kenya is an instructive example. In 2014, the country faced an alarming reality: not enough was being done to reach adolescents and young people (10 – 24 years) living with HIV. Despite the scientific and biomedical tools being used to address prevention and treatment, many of the country’s youth were still becoming infected, experiencing adverse health affects and dying. We needed to understand the structural and behavioral issues standing in the way of reaching them.

Evidence tells us that many young people are losing their lives to AIDS due to poor, or lack of adherence to anti-retiroviral therapy. But we needed to understand the drivers behind this. And for that, we needed to go straight to the source. By engaging directly with adolescents and young people, we heard first-hand about the unique challenges they faced. The experience was eye opening. Many individuals reported not seeing their own value in the world and, as a result, lacked any motivation to stick to their treatment regimens. Other concerns ranged from how to keep their HIV status confidential and manage stigma to navigating financial issues and relationships.

As heartbreaking as some of the feedback was, it was exciting to watch this group of young people identify leaders within their own ranks, define their identity and mobilize themselves to address some of the very issues they reported experiencing. For the first time, they felt that they were having an opportunity not just to speak, but to truly be heard. They were inspired by the knowledge that there is strength in numbers. The Sauti Skika movement was born. It has since expanded nationally and is now helping to inform the efforts of other countries.

Initiatives like Sauti Skika, coupled with supportive political and stakeholder environments, can achieve enormous progress. In Kenya today, the President actively champions stigma reduction for young people living with HIV. Targeted messages and improved access are now reaching this demographic as well.

Less Formal Networks Can Be Equally Effective

Innovative, less formal networks also are empowering young people as champions for positive change. Though often lacking funding and support, by linking up with other, more seasoned networks, these groups are making important strides. For example, Chapter for Young Women, Adolescents and Girls — hosted by the International Community of Women Living with HIV — started as a simple Facebook group in 2010. It has since grown to include a dedicated staff and to become a joint partner in the “Do You see HIV’ campaign.

In 2008, the UNAIDS Report on the Global AIDS Epidemic gave rise to another unique self-advocate network, hosted by GNP+. Despite the magnitude of impact the epidemic has on young people, there remained a shocking gap in support to, and meaningful participation of, this population in the design and implementation of programs to respond to it. Y+ was created as a space young people could share experiences, identify priorities requiring attention and drive progress.

These are just some of the many examples of informal networks providing a platform for intensifying global voices and engaging adolescents and young people in decision making for their health. Imagine such success at a global scale. This is within reach - the seeds are already planted and only need to be cultivated in order to grow. These groups, and others like them, must be supported in order to realize globally the progress already taking place at national and grassroots levels.

Ensuring these Voices are Not only Heard, but Heeded

It’s clear that the children and families affected play a critical role in the global response to the HIV and AIDS. But as we look to end the epidemic by 2030, more must be done to ensure their invaluable input is included as policy and funding decisions are made. We must turn up the volume on their voices so that they are heard by:

  • Moving beyond the lived experience. In addition to providing details on what their life is like, children and families affected by HIV and AIDS must also be meaningfully involved in the planning, design, implementation and monitoring of policies and programs.
  • Building capacity and confidence. Constant mentorship and guidance is necessary, as is ensuring that these individuals have access to the most up to date research and information on progressive laws and policies.
  • Supporting resilience. Great scientific and biomedical strides have been made to address prevention and treatment. However, we are not progressing in the same capacity with respect to the structural and behavioural issues that affect living and thriving with HIV.
  • Providing platforms and opportunities. Often, people living with HIV represent only a small part of a much larger constituency. Ensuring the inclusion of children’s voices is even more difficult. Identifying innovative ways for children to participate will secure their meaningful contributions for influencing policy and funding. 

We have made progress, but we need to find ways to better engage children and families affected by HIV and AIDS. Only by turning up the volume on the most important voices in the global response, and using their real life experiences and invaluable input, will we be on track to end the epidemic by 2030.

To learn more or get involved follow Children Affected by AIDS on Twitter at @ChildrenandHIV.

About the Author

Florence Anam is an experienced advocate for women’s rights with years of community engagement and international advocacy on issues including maternal health, reproductive rights, equality and social justice. She has worked to expand economic and education access for women and girls living with HIV and to strengthen public, private, and community-based responses through advocacy, communication, program design, implementation, evaluation and documentation.

Prior to her role at ICW, Florence served as the Advocacy and Communications Officer at the National Empowerment Network of PLHIV in Kenya managing the advocacy portfolio and community heath engagement activities and served as a liaison between communities and the Minister of Health. She is a member of the national Global Fund HIV/ICC as well as a member of various regional and national Technical Working Groups representing communities.