An African generation who have grown up living with HIV is coming to terms with how society views them and the disease. Born in the 1980s and 1990s, at a time when little was known about the virus, these individuals had uncertain futures. However, advances in HIV treatment have transformed their prospects. Unfortunately, perceptions about HIV and of those who live with the virus have not progressed as fast. For some of this generation, stigma, discrimination, and false perceptions of living with HIV has taken a mental toll.
“Young people are having difficulties disclosing their status because of the stigma associated with HIV. This is making them not adhere to treatment for fear of being stigmatised both by the people around them and people in the health institutions”, said Brenda Khayumbe, a Her Voice Fund ambassador for Y+ Kenya a national network of young people living with HIV. Khayumbe, who is HIV positive, adds that people living with HIV need support and encouragement to feel a sense of belonging.
Some young Africans living with HIV have taken matters into their own hands to fight the stigma. They are using the most powerful human communication tool of their time: social media. Facebook, Instagram, and Tik Tok, where they command audiences of hundreds of thousands, are the most used. Doreen Moraa, who is 30 years old, is one such person advocating against discrimination on social media. She first posted her HIV journey on Facebook in 2015, which marked the beginning of her social media advocacy. “I received so many calls from people who knew me”, Moraa told The Lancet HIV. “At first this felt awkward and I felt ashamed but then I gained courage to respond to their questions”, she said.
Moraa discovered she was living with HIV when she was 8 years old in 2000 and started taking antiretroviral therapy (ART) when she was 13 years old in 2005, when the drugs became free and easily available. In 2011, she stopped taking ART because of treatment fatigue. “I was just tired of taking drugs every day”, Moraa said. She sought alternative treatment: traditional herbs that she took only once from a Tanzanian herbalist.
However, bouts of opportunistic infections such as tuberculosis, pneumonia, and zoster affected her severely, and she restarted antiretroviral therapy (ART). Moraa’s parents were a discordant couple—her mother has HIV/AIDs and her father, who died in September 2021 did not. She and her mum both learned their HIV statuses at the same time.
“People with HIV are thought to be thin and sickly hence why they are stigmatised”, Moraa said. Her social media posts have been a way to change perception. “We, living with HIV, do things that other people do and live a normal life”, she said. “The only difference is that we take our medication daily.”
“‘You can be born with HIV but not with stigma. Stigma is a communicable disease that spreads really fast.’”
Initially Moraa’s parents had reservations on her social media posts but became supportive. A media house picked up her story and published it. The attention it brought was bitter sweet. “While I try to make my page educational, some people will make negative comments about my status, some think I am clout chasing, others think I lie and am after money”, Moraa said. She won the Kenya National AIDS Control Council Advocacy award among communities of adolescents and young people (AYPs) in the Maisha Conference 2021 and Youth Taskforce (UN-Women) AYP advocacy award. Moraa partners with Maisha, an HIV stigma reduction intervention in antenatal care to reduce HIV stigmatisation. She has also been working with the International AIDS Society.
Advances in ART have seen antiretroviral drugs combined into a single tablet, This reduced pill burden has made life easier for people such as Bakang Garebatho from Botswana, now 27 years old. Garebatho refers to himself as an HIV activist who refused to give up his life to the virus. He was born with HIV and diagnosed at age 7 years. His mum also died when he was 7 years old and his dad died 3 years later. They were not on treatment. Fatigue and pill burden are his biggest challenges. “You wake up and you feel like you have just had enough and maybe you should give up”, Garebatho told The Lancet HIV. “Pills are also a reminder of the condition that you live with.” However, the evolution to a single pill has helped. “Before we used to take a cocktail of drugs which was a struggle”, he said. Garebatho said programmes like teens club have helped him with acceptance and adherence to treatment. His social media activism is voluntary and is aimed at changing people’s perception.
Garebatho is also an advocate at sentebale, a charity founded by Prince Harry of the UK royal family and Prince Seeiso of Lesotho for children and young people affected by HIV in Lesotho and Botswana. In addition to his legal work, Garebatho offers primary psychosocial services to adolescents and young people in Botswana. “You can be born with HIV but not with stigma. Stigma is a communicable disease that spreads really fast. As soon as I built a strong wall of defense against stigma and discrimination, I became a better person and am living better life”, he said.
As ART has improved the wellbeing and physical health of most youth with HIV, improving mental wellbeing has been the next frontier.
“I have recently realised mental health is a big challenge for people living with HIV, which is an area that if one misses to get help he or she can lose it and completely stop taking drugs”, said Saidy Brown, a 27 year old South African born with HIV. “Whenever I go through these episodes I seek help from the mental health experts.”
Brown was born with HIV, and her mum died when she was 10 years old. Her dad had died a year earlier. The youngest of four children, Brown learned her HIV-positive status at age 14 years when a non-governmental organisation offered free HIV testing at a school seminar. She has been on medication since 2013, when she was 18. Brown started writing motivational letters on HIV to herself after testing positive. “One day I decided to post one of my letters on Facebook, when I was 18, titled An Open Letter to HIV”, she told The Lancet HIV. “I just felt maybe a few people who knew me and didn’t know about my status needed to know. I used to write these letters when feeling down.” Encouraged by the response from the letter, she started documenting her life on social media and slowly turned it into advocacy. Brown’s aim is to educate and encourage people living with HIV online. “I needed to create a safer space for people with HIV where we can have a conversation and encourage each other”, she said. “It can be overwhelming taking antiretrovirals daily. But when you know there are other people going through the same and who lift up your spirits when you are can down it feels good.” Alongside her advocacy work on social media, Brown also works with Y+ South Africa, a global network for young people living with HIV.
“Only 25% of adolescent girls and 17% of adolescent boys aged 15–19 in eastern and southern Africa have been tested for HIV in the past 12 months”
Brown has also worked with various organisations such as Children’s Radio Foundation and UNICEF to advocate for the youth living with HIV. She is a Red Ribbon Foundation Youth For Change HIV/AIDS Activist Award (2017).
As more youth come out to advocate against the HIV stigma, experts are encouraging this move. Nelson Otwoma, Chief Executive Officer of National Empowerment Network of People Living with HIV/AIDS in Kenya (NEPHAK) says most people assume that young people living with HIV acquired it through sex and forget that some were born with it. “However those who acquired it through sexual intercourse choose to say they were born with it for the fear of being stigmatised more”, Otwoma told The Lancet HIV.
“Stigma is the biggest barrier to acceptance for young people, and this needs to be addressed. Unlike before, there is HIV treatment, which if young people living with HIV adhere to it then they live a normal life without challenges like opportunistic infections”, said Otwoma.
Fighting HIV stigma is very important in sub-Saharan Africa because a 2021 UNICEF report on HIV and AIDS in adolescents shows that 89% of adolescents living with HIV are in the region. According to the report, adolescents and young people represent a growing share of people living with HIV worldwide. In 2020 alone, 410 000 young people between the ages of 10 years and 24 were newly infected with HIV, of whom 150 000 were adolescents age 10–19 years.
Only 25% of adolescent girls and 17% of adolescent boys aged 15–19 years in eastern and southern Africa have been tested for HIV in the past 12 months and received the result of the last test. The testing rates in west and central Africa and south Asia are even lower. The UNICEF report warns that, if the current trends continue, hundreds of thousands more will become HIV-positive in the coming years, and without knowing their status, adolescents will miss out on life-saving treatment.
According to UNAIDS guidance for countries to implement effective programmes to eliminate HIVrelated stigma and discrimination in six settings, people living with HIV often face multiple intersecting stigmas related to other stigmatized health conditions or identity. Because of stigma and discrimination, members of key populations might avoid health-care settings altogether or choose to withhold vital information about themselves if they do seek services, which could result in inadequate care and treatment.