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Youth and HIV: Using social media to fight stigma, discrimination

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Youth and HIV: Using social media to fight stigma, discrimination

On this World AIDS Day, we look at how platforms such as Facebook, Instagram and Tik Tok, have become dynamic spaces where youth, commanding large audiences, share their life journey and advocate for change
Christabel Ligami
From Africa Renewal: 
1 December 2023
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An increasing number of youths living with HIV in Africa is turning to social media to combat stigma. Despite the remarkable strides made in the field of medicine, the perception of HIV/AIDS and people living with the virus seems stuck in the stone age. While medical progress has transformed our understanding and management of HIV, still, outdated attitudes persist, reflecting societal reluctance to evolve in tandem with scientific advancement.

For youth in Africa, the mental toll brought by stigma, discrimination and misconceptions surrounding HIV/AIDs weighs heavily on their shoulders.

Yet an increasing number of youth advocates are emerging to advocate against the HIV stigma, and experts are lauding the pivotal role social media is playing as a timely tool for fostering HIV awareness, encourage testing, promoting medication adherence and challenging prevailing stigma.

Young Africans living with HIV are using the most powerful human communication tool of their time; social media.

Platforms such as Facebook, Instagram and TikTok, have become dynamic spaces where these youth, commanding audiences numbering hundreds of thousands, share their life journey and advocate for change.

Doreen Moraa (Kenya)

Doreen Moraa, a prominent HIV advocate, exemplifies the power of social media in reshaping perceptions. Her candid disclosure of her HIV status and journey on Facebook in 2015 marked the beginning of her social media advocacy.

Despite initial reservations and the stigma, she faced, Ms. Moraa’s posts have evolved into a platform for education and dispelling myths about living with HIV.

"I received so many calls from people who knew me," 30-year-old Ms. Moraa toldAfrica Renewal."At first, this felt awkward, and I felt ashamed but then I gained courage to respond to their questions."

Few know that she had stopped taking the HIV medication in 2011 because of “treatment fatigue”.

"I was just tired of taking medicine every day," Ms Moraa said.

However, when not taking her medication led to serious consequences such as opportunistic infections like TB, Pneumonia, and herpes zoster, she returned to her HIVmedication and treatment.

Ms. Moraa got to know about her status when she was only eight years old. She had been a sickly child. Her parents believed she had been bewitched hence the frequent illness.

Ms Moraa was put on ARVs at age 13 when the drugs became free and easily available.

Her social media posts have been a way of changing perception.

“People think that those living with HIV are thin and sickly hence the stigma," Ms. Moraa said, adding: "People living with HIV do all the things other people in the society do and live a normal life. The only difference is that we take our medication daily."

In the beginning, Ms. Moraa’s parents, especially her father, did not approve of her social media posts, but they later accepted it and supported her.

She gained a lot of traction when a media house picked up her story and published it. The attention it brought was bittersweet.

"While I try to make my page educational, some people will still make negative comments about my status. Some think I am clout-chasing, while others think I lie and only after money," Ms. Moraa said.

Ms Moraa is now a two-time award winner in combating HIV/ AIDS stigma and Advocacy. She won the Kenya National AIDS Control Council Advocacy award among communities of AYPs in the Maisha Conference 2021 and Youth Taskforce (UN Women)|AYP advocacy award.

Ms Moraa partners with Maisha,an HIV stigma reduction intervention in antenatal care (ANC) to reduce HIV stigmatization.

She has also been working with International AIDS Society (IAS), an organization that educate and advocate for a world in which HIV no longer presents a threat to public health and individual well-being.

You can follow her social media handles:

  • @deemoraa01

Bakang Garebatho (Botswana)

Mr. Garebatho, 27, is a self-proclaimed HIV activist and uses his X (Twitter) and Facebook accounts to challenge societal perceptions, contribute to the ongoing battle against stigma, and provide support for those living with HIV.

He was born with HIV but was only diagnosed at the age of seven years.Soon after, his mother passed and three years later, his father also died. They were not on treatment.

Yet, fatigue and what he called “pill burden” was his biggest challenge.

"You wake up and feel like you have just had enough. You think maybe you should give up," Mr. Garebatho toldAfrica Renewal. "Pills are also a constant reminder of the condition that you live with."

However, he acknowledges that the evolution of one pill has really helped. Advancements in medicine have seen the antiretroviral (ARV) drugs collapsed into one pill a day from the previous 4 - 6 pills a day.

In his advocacy, Mr. Garebatho said programs like teens club have helped him with acceptance and adherence to treatment.

Mr. Garebatho is also an Advocate at Sentebale, a charity founded by Prince Harry and Prince Seeiso that gives hope to children and young people affected by HIV in Lesotho and Botswana.

In addition to his legal work, Mr Garebatho offers primary psychosocial services to adolescents and young people in Botswana. He also educates the public about HIV through his social media platforms.

“You can be born with HIV but not with stigma. Stigma is [like] 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.

His social media activism is voluntary and is aimed at changing people's perception.

Saidy Brown (South Africa)

As the ARVs have improved the wellbeing and physical conditions of most youth living with HIV/AIDs, their mental wellbeing has been the next battle frontier.

"I have recently realized mental health is a big challenge for people living with HIV. This is an area that if one misses to get help, they can lose it and completely stop taking drugs," Saidy Brown, 27, told the Africa Renewal Magazine.

"Whenever I go through these episodes, I seek help from the mental health experts."

Ms Brown was born with HIV and her mother died when she was 10. Her father had died a year earlier.

The last born in a family of four, she learnt of her HIV status when she was 14 years. An NGO was offering a free HIV testing at a school seminar.

She has been on medication since 2013.

Ms. 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 said.

She added: "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.

Ms Brown's aim is to educate and encourage people living with HIV through her social media accounts.

"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 ARVs daily. But when you know there are other people going through the same and who can lift up your spirits when you are down, it feels good."

Ms Brown also works with Y Plus South Africa, a global network for young people living with HIV.

She has also worked with various organizations like Children’s Radio Foundation, UN Women, and UNICEF to advocate for the youth living with HIV.

She is aRed Ribbon Foundation Youth for Change HIV/AIDS Activist Award (2017).

Ms. Brown’s social media accounts have grown.

More resources:

According to UNAIDS, the UN agency tasked with fighting HIV and AIDS, if we are to end HIV and AIDS by 2030, young people need to lead the way. Thehighlights 6 settings where stigma and discrimination can occur. These are:

  • Community
  • Workplace
  • Education
  • Health care
  • Justice
  • Emergency
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