From Youth Advocate to Global Ambassador

I learned of my HIV status when I was just eight years old. At first, I was scared, depressed, and angry about what this meant for me and my future. I was aware – that in some people’s perspectives – having HIV meant that I would live a short and unfulfilled life. But thanks to support clubs for kids like me created by the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) and anti-retroviral therapy provided by my local hospital with support of the President’s Emergency Plan for AIDS Relief (PEPFAR) – I overcame those negative feelings and transformed my fears into activism not only for myself but for other young people living with HIV.

In order to achieve an AIDS-free generation, children must be actively included in the strategies needed to end AIDS. Unfortunately, it is commonplace for children and adolescents to be overlooked in the global AIDS response. Perhaps it is because they cannot clearly express their pain and fears as clearly as adults can? Or is it because tailoring treatments that make it easier for children to take their medicines is too difficult an endeavor? Whatever the reason is, it does not mean we should give up on engaging children in care for HIV – if anything, we must work harder to reach every child in need of HIV treatment.

“As I have grown older, I have found my voice and made it my mission to help other children impacted by HIV live vibrant, healthy lives both around the world and in my home country of Uganda…”

As I have grown older, I have found my voice and made it my mission to help other children impacted by HIV live vibrant, healthy lives both around the world and in my home country of Uganda where 11% of those living with HIV are children under the age of 15. Currently, in my role as an EGPAF board member – I have a platform to advocate on behalf of children, youth, and families living with HIV globally. In my visit to Capitol Hill this upcoming June, I will meet with policymakers at the highest levels of government to urge them to safeguard funding for programs like PEPFAR.

Since 2003, the U.S. government has dedicated billions of dollars to medical research and treatment roll-out in countries hardest hit by HIV through PEPFAR. By doing so, the U.S. has helped save over 21 million lives, transformed the global fight against HIV/AIDS, and signaled to the world that an AIDS-free generation is possible. But as the world continues to grapple with COVID-19, which has put our incredible progress in the fight against HIV at risk, we must not lose focus on the well-being of children, youth, and families impacted by HIV.

“But as the world continues to grapple with COVID-19…. we must not lose focus on the well-being of children, youth, and families impacted by HIV.”

Now is not the time to pull back on these programs. If anything, the COVID-19 pandemic has demonstrated how the success of programs like PEPFAR can be leveraged to deliver lifesaving diagnostic tools and treatments for other illnesses while still supporting HIV/AIDS programming in communities around the world. As a young person living with HIV, I – like many others – depended on PEPFAR to ensure I had access to the medications I needed to grow into the healthy woman I am today. By protecting PEPFAR and budgeting funds for a global COVID response, the U.S. will save the lives of millions more children, youth, and families and further cement itself as the true leader of global health advocacy.

Josephine Nabukenya is a Ugandan HIV/AIDS Activist and board member of the Elizabeth Glaser Pediatric AIDS Foundation. In 2016 she was awarded the Queen’s Young Leader Award for her advocacy work.