The silence is ominous and almost palpable.
Many young people living with HIV are afraid to share their status with the media or even their friends, classmates, and teachers.
This is because of continuing stigma and uncertainty over how others would react to news that someone they know is living with HIV—the virus that causes AIDS.
Yet, Lesotho’s HIV challenge among adolescents is real.
But some young people like 22-year-old Nthabeleng Jane from Mazenod Ha Sekepe, are fighting to overcome HIV stigma and discrimination.
Jane knows HIV thrives in secrecy and but has decided to break the mould and is speaking out about the virus to as many young people as she can.
Jane, like many youths in the country, has been taking care of her 17-year-old sibling since primary school while her single mother works as a domestic worker in South Africa.
In August 2017, at tender age of 20, Jane discovered she had contracted HIV.
In an interview with the MNN Centre for Investigative Journalism, Jane narrated how she came to know her HIV status.
“One day, I woke up with severe flue. I decided to come to this clinic (Paki), but before seeing a doctor, the nurses strongly encouraged me to test for HIV. I could say it was compulsory because if I did not test, I would not have been allowed to see the doctor.
“I was scared but at the same time, bold enough and adamant that there was no way I could be found with the infection.
“But because I desperately wanted to see a doctor, I had to abide by the clinic’s policies and test for HIV and the results came positive.
“During the counselling process, I was thinking, the counsellor was only wasting her time because I strongly believed I was ‘clean’,” said Jane.
Jane says she was given some Anti-RetroViral (ARV) drug called TDF (Tenofovir Disoproxil Fumarate), which she used for 14 days and was instructed to collect some pills at the end of those 14 days.
ARVs prevent a retrovirus, such as HIV, from replicating.
“I was told the pills would decrease chances of more infection in my blood, so I was strongly urged to use them as prescribed and that I would use them for the rest of my life,” Jane said.
Jane further said after discovering she was HIV-positive, she did not want to meet other people, as she assumed everyone knew her status.
“The good thing is just after finding out I had the infection, the nurses introduced me to the Peer Support Group (PSG), and I started having sessions with other young people.
“Honestly, my first days in this club were not easy at all because I was not comfortable enough to open up to other people, especially my peers who I noticed were most talkative.
“But I must say as time moved on, I became very bold and was able to share even the rest of my problems with the group. I noticed that the club keeps us very informed, more than the counselling does. I started to learn how to accept things I could not change. I learned that through the support I got from my peers, it would be easier for me to accept my status,” she said.
Jane also highlighted that during the sessions, they are able to share general issues that affect them as the youth, as well as advising each other on how to overcome teenage-challenges even if they are not related to HIV issues.
“We talk about life in general, support each other, and feel like one big family. That’s why when I miss one session, I feel like I am empty knowing that I have missed a lot of information. The group is funny and flexible; there is no wrong idea when we are in there,” she says boldly.
Young as she was, Jane says it was hard for her to open up to her mother when she came home in December 2017, until she noticed her ARVs among her clothes and became curious.
“Because I had already participated in the clubs (PSGs), I was bold enough to face her. I respectfully told her that I had the infection.
“My mother was furious. She accused me of having misbehaved while she was away. After she calmed down, she encouraged me to take my medication as prescribed by doctors and by so doing, I would live long. When she is at home, she even pushes me to take my pills when it is time (8pm).
“This has made me even bolder as I realised that people want reality, and if you become real to them, they can be shocked first but later become supportive regardless of the situation,” Jane says.
People surrounding her have also been supportive, Jane added.
“In addition to my mother’s support, I also have a friend and class-teacher who has always made me believe being HIV-positive does not describe who I am,” Jane says.
She encourages people, especially the youth, to test for HIV.
“Once you find out you are infected, the first step is to accept, then use your medication as prescribed by the doctors. That way, you may live longer.
“Another thing is, don’t feel forced to reveal to everyone your status. It won’t be easy; you have to first be prepared and know that people will react differently. Some will reject you while others will show support. Then if you feel like you are ready, you can disclose to anyone you want.”
She adds: “Living with the infection, we are encouraged to eat healthy food, including fruits and drink a lot of water, especially us who are taking the TDTs because we are told they change the liver to yellow in colour. So this means not drinking enough water could increase the chances of liver-damage.
“Thanks to my mother because with the little M2500.00 she earns every month, she is able to pay school fees for both myself and my sibling, make sure we do not go to bed on empty stomachs and that like other children, we have adequate clothes.”
The United States President Emergency Programme for AIDS Relief (PEPFAR)-funded Elizabeth Glaser Paediatric AIDS Foundation (EGPAF), in its technical bulletin published in July 2018 on Spotlight on adolescents and youth and HIV reports that “Lesotho has one of the highest national HIV-prevalence rates in the world at 25-percent.
“The prevalence of HIV among adolescents from 15-19 years old is 51-percent.
“Driving the epidemic in this demographic is early onset of unprotected sexual activity (about 46% of young women and 60% of young men 15-19 years of age have had sex at least once and an estimated 20% of women have given birth before age 20), intergenerational sex and low HIV-knowledge (among adolescents, only 35 percent of females and 30 percent of males are estimated to report having a comprehensive HIV-knowledge).”
A recent study reported in The Lancet has shown that young people on the latest HIV drugs now have near-normal life expectancy because of improvements in treatments.
Twenty-year-olds who started antiretroviral therapy in 2010 are projected to live 10 years longer than those first using it in 1996, it found.
Doctors say that starting treatment early is crucial to achieve a long and healthy life.
Charities say there are still too many people unaware they have the virus.
This is particularly true in the developing world, where the majority of HIV deaths occur because access to drugs is limited.
The study authors, from the University of Bristol, said the extraordinary success of HIV treatments was a result of newer drugs having fewer side effects and being better at preventing the virus from replicating in the body.
It is also more difficult for the virus to build up a resistance to the most recent drugs.
Improved screening and prevention programmes and better treatment of health problems caused by HIV are thought to have helped, too.
But many people with HIV still do not live as long as expected, especially those infected through injecting drugs.
Antiretroviral therapy involves a combination of three or more drugs which block the normal progress of HIV (human immunodeficiency virus).
They have been called “one of the greatest public health success stories of the past 40 years”.