From Secrets and Stigma to Proud Peer Educator

Robinah Babirye, a Ugandan, remembers her mother giving her pills from the time she was very young, but she didn’t know why and couldn’t explain it to her questioning classmates.

It wasn’t until age 9 she and her twin sister discovered they were born HIV-positive. Their mother told them she had contracted HIV during a 1994 blood transfusion and didn’t have access to measures for preventing transmission to her children.

To avoid fellow students’ questions, Robinah tried taking her pills without anyone noticing or not taking them at all. “Growing up with HIV was hard,” Robinah says. “I had to take lots of medicines daily, yet I was told the disease I had was incurable. This was demoralizing, and I could not tell people about it.”

As a result of poor adherence to her medication, Robinah developed resistance to antiretroviral therapy.

With her life in danger, Robinah was put on second-line treatment. Her mother paid for her to attend weekly counseling sessions, and Robinah developed a strategy to take her medications in her school clinic. When she forgot to take her pills, the school nurse reminded her.

Once she finished her secondary studies, Robinah decided to make a change. She posted a picture of herself on Facebook wearing a shirt with the words “I AM HIV POSITIVE.” That night, she connected with many people who applauded her courage. She was suddenly in the public eye and began appearing on TV and radio shows. Since then, Robinah has started university and founded an organization to help young HIV-positive people with adherence and psychological challenges.

“Being HIV-positive is not the end of life,” Robinah says. “Whoever reads my story will be empowered and encouraged to fight stigma in society. I am grateful to the American people for giving us support.”