- Swaminathan Natarajan
- BBC World Service
It was the summer of 1981 when health officials first became aware of the existence of HIV/AIDS.
In the 1980s, an AIDS diagnosis was like issuing a “death sentence,” but with great advances in medical science it is now largely possible for HIV patients to lead normal, healthy lives.
But the latest data from the United Nations indicate that children living with HIV are not getting the attention they need.
“The world continues to fail children in the AIDS response,” says Foday Simaga, director of Global Practice for Science, Systems and Services for All at UNAIDS. “New HIV infections among children can be prevented, yet there are 160,000 new infected children in 2021.
According to the United Nations, more than 84.2 million people have been infected with HIV since the start of the epidemic and more than 40 million people have died from AIDS-related diseases.
Compared to the early days of the epidemic, antiretroviral drugs are now widely available, but this progress in treatment is not the same for all groups.
The United Nations says that while 76% of all infected adults were receiving antiretroviral drugs in 2021, only 52% of children (0-14 years) had access to treatment.
The BBC interviewed three young people living with HIV from three different countries to talk about their experiences.
“My child will not be born infected with AIDS“
Martha Clara Nakato, Ugandan, is 26 years old and lives in Kampala. She was diagnosed with AIDS when she was fourteen.
His twin brother was worried because he was having unprotected sex. Martha accompanied him to the medical unit for HIV testing. Since the medical visit was free, Marta also decided to get tested.
While her brother tested negative, Martha’s results were positive.
Martha says, “I remember my twin brother turning to me and saying, ‘Hey, did you have sex? I replied ‘No, I don’t know where it’s from’…”.
Martha’s mother died when she was five years old. And her father raised her. Both (mother and father) were HIV positive.
Of the eight boys, Martha was the only one to become infected.
“I didn’t see a reason to live. The media at the time was running stories stigmatizing people for having AIDS. In Europe, HIV was associated with drug use. In Africa, it was associated with sex. It became too much I had “suicide bomber” tendencies.
Martha found comfort in helping other teenagers with similar experiences and joined an AIDS support group.
“They saw me as a spark of light and hoped I’d follow in their footsteps. They came to me for advice,” she says.
Thanks to that group, Martha regained her confidence. Her studies were going well and she even participated in a beauty contest organized for HIV-positive young people. She is now on the jury.
She stresses the importance of HIV prevention methods and says: “When having casual sex or a one night stand and to enjoy the moment safely, only use a condom.”
Martha understands the difficulties of coming with HIV. But she doesn’t hide anything from her sexual partners.
She says, “I want someone to love me with HIV, because it’s part of me, even though the infection doesn’t mean who I am,” and she means that her personality isn’t summed up by her infection.
“I dated three men. Everyone knows my HIV status. They love me for who I am…Don’t ask me why I’m not married. I’m not married because our dreams are different.”
The three men were, and still are, HIV positive. Martha says the antivirals she takes daily have inhibited the virus and reduced her viral load.
“I am 101% sure that one day I will become a mother and the child I will have will not be HIV positive. I say with all my heart that I hope, because I am following a very effective treatment,” she explains.
“I don’t expect much from the company.”
Lulu Manjang, a 23-year-old transgender AIDS activist, lives in Imphal in northeastern India.
Lulu studied zoology and is now planning to pursue graduate studies in biochemistry. “I would like to research the effectiveness of HIV medications,” she says.
Lulu was born in Delhi in 1999 to a poor family. After her father’s death in 2002, she was raised by her maternal uncle. “I was diagnosed with AIDS when I was six or seven,” she says.
“I didn’t know how to act. I was angry and sad. I had mixed feelings. I don’t know who to blame. I was also angry with myself and cursed at her.”
“I spoke to my mother, and she explained that the disease was passed on to me from her,” he explains.
His mother introduced him to a group of HIV positive children, who helped him make friends, but he also faced discrimination.
She says: “One of the children suddenly pointed out my condition while I was playing and told me not to go near him or play with him. We then got into a violent fight and both suffered bodily harm.”
As she grew older, Lulu learned to deal better with challenges.
“I don’t expect much from the company,” he says, “we are different from each other and we all have different mindsets.”
“Some may see me as I see myself, some may not,” she explains.
Lulu says she has encountered no barriers to getting treatment because she is transgender. He has been active for three years in an NGO, which allows him to work with young people living with HIV.
Loulou believes that raising awareness of the disease is essential to stop discrimination: “Due to the lack of security conditions and lack of information, many people become victims and face discrimination,” she says.
“I have decided not to hide my injury, not because it is easily accepted here in my state (Manipur). I did it because it might be an inspiration and motivation for some young people,” he added.
His decision received positive feedback, and many young people turned to him for help and advice.
Finding a way to overcome obstacles is a priority for Lulu: “It’s important to look for another way when society keeps rejecting you,” she says.
“I’m just trying to love myself,” she says.
AIDS in numbers
- Number of people living with HIV/AIDS reached 38.4 million worldwide in 2021
- 1.5 million people will be infected with HIV in 2021
- 650,000 people died from AIDS-related diseases in 2021. This includes approximately 110,000 children and adolescents aged 0-19.
- The number of young people living with HIV is 2.7 million
- Children and adolescents make up just 7% of all people living with HIV, yet account for 17% of deaths and 21% of new infections recorded in 2021.
- 84.2 million people have been infected with HIV since the start of the epidemic and 40.1 million people have died from AIDS-related diseases.
Source: UNAIDS and United Nations Children’s Fund (UNICEF)
“I will reveal it Of I’ll get AIDS when I’m ready.”
Ayana, an 18-year-old college student, was born in Osh, Kyrgyzstan, and now resides in the capital, Bishkek: “I’ll declare that I have AIDS when I’m ready,” she says.
“Ever since I became aware of my existence, I have lived with the virus,” she told the BBC.
According to UNAIDS, between 2006 and 2007, 391 children contracted HIV while in hospital, including Ayana. Ayana’s mother has attended a series of workshops that have helped raise her daughter fearless.
During her teenage years, Ayana joined groups to support people living with HIV.
“We help each other,” she says.
Unlike Ayana, there are many girls who don’t take their daily meds, but she tries to help them.
“I have a friend who didn’t want to take pills,” she explains, “we created secret words to communicate. When I want to remind my friend of her meds, I ask her, ‘Did you water the flowers?’ ”
Ayana did not reveal the truth about her health condition and AIDS infection except to her family members and close relatives.
“Someday I’m going to go out in public, but I’m not going to do it for my parents or anyone. I’ll do it when I’m ready,” she says.
He indicates that he is aware of the difficulties his friends face after news of their injury is leaked.
“The stigma and discrimination still exist. Recently, a classmate friend of mine took her diary and found that she had AIDS. It was widely reported, she was bullied and eventually had to change schools” , He says.
Ayana has enrolled in university and hopes to become a journalist in a few years. In her spare time she writes fairy tales and hopes for a happy ending.
“Life is like running water. Everything that has happened to me has made me who I am today. I want to continue living this life as it is and see where it takes me.”