The Most Persuasive Advocates

By Coalition Member, Florence Anam, Advocacy and Communications Manager, International Community of Women Living with HIV 

No arguments are more persuasive or better able to influence global HIV and AIDS policy and funding decisions than those of the children and families affected by the disease. That is why it is so critical to empower advocacy networks made up of these individuals to be champions for change and to amplify their voices.

These networks, also known as self-advocates, know best the challenges they face and the solutions that are most likely to work for them. Sharing their point of view directly with decision-makers at the global level better ensures their essential input is included as policy and funding decisions are made.

While many self-advocate networks are currently working to shape decisions around children affected by HIV and AIDS, more must be done by those of us in the global health and development space to strengthen their voice and visibility at all levels by:

  • Moving beyond the lived experience. In addition to providing details on what their life is like, self-advocates must also be meaningfully involved in the planning, implementation and design of policies and programs.
  • Building of capacity and confidence. Constant mentorship and guidance is necessary, as is ensuring that self-advocates have access to the most up to date research and information on progressive laws and policies. We must also build self-advocates’ capacity to speak about intersectionality – how, for example, HIV intersects with violence, human rights, leadership, economic capacity and resilience.
  • Supporting whole child 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. As well as medicines work, they do very little to build a child’s confidence or support resilience to socio economic pressures. Furthermore, structural and behavioural issues are major barriers to accessing care and treatment. These pressures affect children generally, but particularly impact those living with HIV.
  • Providing platforms and opportunities. Often, self-advocates represent only a small part of a much larger constituency. Their inclusion in a particular convening may be little more than an after thought. In a meeting of 100 other people — such as ministry officials, policy makers, physicians, etc. — there may be only one or two self-advocates. 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. To that end, the integration of both adult and children self advocates in global and country discussions must be a higher priority.

We have made progress, but we need to find ways to better engage self-advocates. That is why my organization, the International Community of Women Living with HIV, is so excited to be working with the Coalition for Children Affected by AIDS. We look forward to making sure that the issues of women and children are fostered together and shared across the same platforms. Our hope is that, by bringing together these two critical target groups, we will increase the volume of our efforts and better ensure that the voices of self-advocates are heard.