Adolescents born with HIV must be told their status

Petronella Sampa Nsomfwa was born with HIV, but wasn't told of her status by her parents before they died. On the launch of a new report she calls on families to be open with their adolescent children about their HIV status.

“I think it was a miracle that I lost my sight because after that I realised there is more in my body than being blind.”

These words, spoken by a 22 year-old Zambian woman who was born with HIV, were part of an emotional speech at the launch of a report by the Southern Africa AIDS Trust in Lusaka, Zambia. Petronella Sampa Nsomfwa drew sighs of sympathy from the audience as she called on families to be open with their adolescent children about their HIV status.

The report, which focuses on sexual and reproductive health for adolescents living with HIV in Southern Africa, was launched at the second African Adolescent Sexual Reproductive Health and Rights Symposium (8-10 December).

Discovery of HIV status

Nsomfwa, who comes from Lusaka, said she started taking antiretroviral treatment after the death of her mother seven years ago. Her father has also passed away.

“I did not understand why I always had to take the medication every day and amongst everybody else in my family. My cousins were not taking medication, so to me it was a problem. Sometimes I would skip taking the drugs,” she said.

“One day I asked my aunt why I was taking the medication and she said that it was because of my health. I wondered what was wrong with my health. Once, I read through my file at the clinic that I was HIV positive and my CD4 count at that time was about 368. I didn’t understand what a CD4 count or HIV was at that time.”

Nsomfwa sent the audience into an immeasurable silence when she said: “I felt disappointed with my mother for dying without telling me about my status.

“When I went to a boarding school one of my friends discovered that I was taking antiretrovirals. I was so shocked, I got upset and I threw my drugs away. For a good two months, I never took my drugs,” she said.

Loss of sight

Nsomfwa revealed that after she stopped taking her drugs she became even more ill and, when she resumed her medication, she had to be placed on second line HIV treatment.

“I had to adapt to the medication and started to get opportunistic infections. I got pneumonia and meningitis which led to the loss of my sight on 25 November 2009. My aunt cried a lot when I lost my sight,” Nsomfwa said.

However, the loss of her sight proved to be a turning point in Nsomfwa’s life, as it enabled her to look beyond her predicament and embark on HIV education. “It was at that point that I told my auntie that there was more to life than being sighted and from that time I started to talk about HIV, even on radio,” she said. “Now I’m happy, I would rather be blind and fight this small virus than be sighted and live unhappily.”

Call for HIV disclosure

Nsomfwa said that if she had been told she was HIV positive earlier on in her life, she would have not gone through so much unhappiness. “I would have enjoyed life the way I enjoy it now, if I had known much earlier. We need to talk as families, even before our doctors come to talk to us about our condition,” she said.

There are around 2.1 million adolescents living with HIV, more than 80 per cent of whom live in sub-Saharan Africa. Many still don’t know their status. This includes young people born with HIV as well as those who became HIV positive in adolescence through unprotected sex and sharing of non-sterile equipment.

HIV testing rates among adolescents remain low with most adolescents not knowing their status. As Nsomfwa’s story shows, young people often need more support to stay in care and adhere to treatment.

Read Kelvin Makura’s story: living positively with HIV and disability

More stories about HIV and young people


  • comment-avatar
    Kati 3 years

    This is a very moving story. Very inspiring. Thank you for sharing.

    I can see why parents decide not to tell their children about their HIV status when they are too young to understand. They don’t want their children to be discriminated against.

    However, risking their children’s physical health in order to protect their mental health is a huge gamble. It feels a bit like a catch 22 when there is still so much stigma attached to HIV.

    • comment-avatar

      Kati, thanks for the inspiring comments. I like the statement (It feels a bit like a catch 22 when there is still so much stigma attached to HIV).

  • comment-avatar
    Lubna Bhayani 3 years

    Such a moving story – thank you for sharing!