- Swaminathan Natarajan
- BBC World Service
Martha says being open about her HIV status helped her receive more moral support
It was the summer of 1981 when health officials first became aware of the existence of HIV/AIDS.
In the 1980s, a diagnosis of AIDS was like issuing a “death warrant”, but with the great advances in medical science it is now widely possible for HIV patients to lead a normal, healthy life.
But the latest figures 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 the Global Practice for Science, Systems and Services for All at UNAIDS. “Prevention is possible of new HIV infections among children, yet there are 160,000 Newly infected child in 2021.
According to the United Nations, more than 84.2 million people have been infected with HIV since the beginning 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 percent of all infected adults were receiving antiretroviral drugs in 2021, only 52 percent 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, from Uganda, is 26 years old and lives in Kampala. She was diagnosed with AIDS when she was fourteen years old.
image copyright Martha Clara Nakato
In 2019, Martha was one of the Global Five Faces of the Fight to replenish the Global Fund, the Step Up Fight Against AIDS campaign, which raised a record $14 billion.
Her twin brother was worried because he had unprotected sex. Martha accompanied him to the medical unit for HIV testing. Since the medical examination was free, Martha decided to take the test as well.
While her brother tested negative, Martha’s results were positive.
Martha says ‘I remember my twin brother turned to me and said, ‘Hey, did you have sex?’ I replied ‘No, I don’t know where this comes 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 who was infected.
“I didn’t see a reason to live. The media at that time ran 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 for me. I had tendencies.” suicide bomber.”
Martha found solace in helping other teens with similar experiences, and joined an AIDS support group.
“They saw me as a spark of light, and they hoped I would lead 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 youth. She is now on the jury.
image copyright Martha Clara Nakato
Martha is very outspoken about her HIV status
Martha is also active in advocating for health rights, with a particular focus on sexual and reproductive health.
She emphasizes the importance of HIV prevention methods, and says, “When you have casual sex, or a one-night stand, and to enjoy the moment safely, just use a condom.”
Martha understands the difficulties of coming up with HIV. But she does not hide anything from her sexual partners.
She says, “I want someone to love me with HIV, because it is part of me, although the infection does not mean who I am,” and she means that her personality is not summed up by her infection.
“I’ve dated three men. They all know 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-free. Martha says the antivirals she takes on a daily basis have inhibited the virus and reduced her viral load.
“I am 101 percent sure that one day I will be a mother, and the child I will have will not be HIV-positive. I say with all my heart hope, because I am on very effective treatment,” she explains.
“I don’t expect much from society.”
Lulu Manjang, a 23-year-old transgender, anti-AIDS campaigner, lives in Imphal, north-eastern India.
image copyright Lulu Mangang
Lulu says society will always find it hard to accept some people
Lulu studied zoology, and is now planning to pursue graduate studies in biochemistry. “I would like to do research on the effectiveness of HIV drugs,” he says.
Lulu was born in Delhi in 1999 into a poor family. After the death of his father in 2002, he was raised by his maternal uncle. “I was diagnosed with AIDS when I was six or seven,” he says.
“I didn’t know how to act. I was angry and sad. I had a mixture of feelings. I don’t know who to blame. I was angry at myself too and cursing at her.”
“I spoke to my mother, and she explained to me that the disease had been transmitted to me from her,” he explains.
His mother introduced him to a group of HIV positive children, which helped him make friends, but he also faced discrimination.
He says, “One of the children suddenly pointed out my condition while playing, and told me not to approach him or play with him. Then we got into a violent fight, and we both got physical harm.”
image copyright Lulu Mangang
Lulu plans to pursue graduate studies in biochemistry, and wants to do research on the efficacy of HIV drugs
Growing up, Lulu learned how to deal better with challenges.
“I don’t expect much from society,” he says. “We are different from each other, and we all have different mindsets.”
“Some can see me as I see myself, and some cannot,” he explains.
Lulu says he has not faced any obstacles in obtaining treatment because he 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. “Because of the lack of safety conditions and the lack of information, many people become victims and face discrimination,” he says.
“I decided not to hide my injury, not because it is accepted easily here in my state (Manipur). I did it because it might be a source of inspiration and motivation for some young people,” he added.
His decision received positive feedback, and many young people reached out to him for help and advice.
Finding a way to overcome obstacles is a priority for Lulu. “It is important to look for another way when society keeps rejecting you,” he says.
“I’m just trying to love myself,” he asserts.
AIDS by the numbers
- The 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 of AIDS-related diseases in 2021. This includes about 110,000 children and adolescents aged 0-19 years.
- The number of young people living with HIV is 2.7 million
- Children and adolescents make up only 7 percent of all people living with HIV, but they represent 17 percent of deaths and 21 percent of new infections recorded in 2021.
- 84.2 million people have been infected with HIV since the epidemic began, and 40.1 million people have died from AIDS-related illnesses.
Source: UNAIDS and the United Nations Children’s Fund (UNICEF)
“I will reveal About I will catch AIDS when I’m ready.”
Ayana, an 18-year-old university student, was born in Osh, Kyrgyzstan, and now resides in the capital, Bishkek. “I will declare that I have AIDS when I am ready,” she says.
image copyright UNAIDS
Ayana is not yet ready to announce that she has AIDS
“Since I became aware of my existence, I have been living with the virus,” she told the BBC.
Between 2006-2007, 391 children contracted HIV while in hospital, including Ayana, according to UNAIDS. Ayana’s mother attended a series of seminars that helped her raise her daughter without fear.
During her teenage years, Ayana joined groups to support people living with HIV.
“We help each other,” she says.
Unlike Ayana, there are many young girls who don’t take their daily medication, but she tries to help them.
“I have a friend who didn’t want to take the pills,” she explains. “We created secret words to communicate. When I want to remind my friend about her medication, I ask her, ‘Did you water the flowers?'”
Ayana did not reveal the truth about her health condition and her AIDS infection except to her family members and close relatives.
“One day I will come out in public, but I won’t do it for my parents or anyone. I will do it when I’m ready,” she says.
image copyright Getty Images
The world aspires to eliminate HIV transmission in children by 2030
She indicates that she is aware of the difficulties that her friends face after the news of their injury leaked.
“Stigma and discrimination still exist. Recently, a friend of mine’s classmates took her diary and found out she had AIDS. It was widely reported, she was bullied, and in the end she had to change schools,” she 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.”