I Continue To Smile: An update from EGPAF Ambassador Rosa

As an EGPAF Ambassador, I use my stories to raise the awareness and resources necessary to end AIDS in children worldwide. I live in Harare, Zimbabwe – and in a recent EGPAF blog post, I shared my story with the world.

After I learned my status, I faced depression. However, after meeting other young people living with HIV who were healthy and happy, I realized that I, too, could overcome this darkness. I joined the Community Adolescent Treatment Supporters (CATS) as a mentor and educator, showing other newly diagnosed young people how to adhere to their medication, how to disclose their status to their families and loved ones, and how to live freely, without allowing their status to define their whole life.

Since that blog post, a lot has changed. As I continued to work with the CATS, the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) recognized my dedication and invited me to join its Committee of African Youth Advisors (CAYA). CAYA is a team of youth advisors that counsels EGPAF in how they can better meet the needs of young people who engage in their services and how to reach those who are not coming to the clinics.

I also became a public advocate. I trained in public speaking and practiced sharing my story. I have taken advantage of opportunities to use my voice to amplify the experience of my peers, highlighting specific challenges that so many face and yet go un-noticed. Recently, I visited Washington D.C. to speak with EGPAF staff so they can better understand our experiences as young people seeking treatment. I have spoken with policymakers, participating in meetings with the Zimbabwe Ministry of Health to advocate for a reduction in the user fees that prevent so many young and unemployed people from accessing lifesaving treatment, and I will continue to raise my voice loud enough so that those with the power will enact change.

In January 2019, I was invited to appear on “The Talk with Tariro,” a popular talk show in Zimbabwe. They were looking for someone who would be willing to disclose their status but were having enormous difficulty in finding anyone willing to go so public. I remembered how alone I had felt when I was first diagnosed. I remembered the confidence and inspiration I found when I saw others living their lives without fear. I accepted their request, and in January of 2019, I told the world that I am living with HIV.

Those who had not known my status definitely knew now.

Strangers would recognize me in the street, or come up to me in a store. Some questioned if I even had HIV, wondering if I did it for the shock value or the fame.

Others, those living with HIV, asked me where I found my courage. They told me that my fearlessness inspired them to tell their loved ones about their HIV status. If I could disclose to the whole world and go on living my life with a smile on their face, maybe they could too.

Soon after the talk show aired, I appeared as a guest on the Zvandiri Radio Show on ZiFM Stereo. I spoke about the challenges faced by young people living with HIV. I spoke about how tenolam E, one of the medications prescribed to people living with HIV, makes you dizzy and hungry for the first two weeks. Without proper counseling, the side effects coupled with food scarcity lead many young people to avoid taking their medication. When they fail to take their medication, the HIV can bounce back. This failure to take medication is often a result of community neglect, unemployment, and insufficient education, but the one who suffers is the young person living with HIV.

Solving challenges such as food insecurity and unemployment requires active engagement from the government and its departments, and these are the types of issues that I raise with policymakers and aid organizations. I will continue to voice these issues while offering my own solutions and a willingness to work and see them through.

In the meantime, I continue to work as a Youth Ambassador. Each day I mentor young people, children, and parents through disclosure, a key step in improving adherence to medication and mental health. I council people through shame, fear, loneliness, and depression. I cannot think of a single young person living with HIV who I have spoken to that has not had suicidal thoughts. Most of us are orphans and feel alone, surrounded by death, abuse, and stigma. Community is key—together, we remind each other that we are not alone, that we are beautiful, that we are deserving and capable of love. That we can live long, fulfilling, and healthy lives.

I know that this sense of community is what is really saving people, and that is what makes me fall in love with my work all over again every day. This community is what brought me out of my darkest moments, and it is an honor to serve it, as it served me.

It is an honor to give back to those who showed me how to smile again.