Young people

NEW YORK/GENEVA, 19 September 2024—With support from UNAIDS, two young social media influencers living with HIV are on their way to the United Nations General Assembly and the Summit of the Future in New York to urge world leaders to partner with them in the response to HIV. Ibanomonde Ngema from South Africa and Jerop Limo from Kenya will call on leaders to invest in youth-friendly health systems, provide holistic services for young people living with HIV, and to partner with young people and communities, allowing them to lead in the response to HIV.

“Young people’s powerful and vibrant activism has driven so much of the progress made in the HIV response,” said Winnie Byanyima, Executive Director of UNAIDS. “They know what works for them. It is essential for leaders to listen to them to understand the specific challenges that young people face and how those challenges can be overcome. Leaders can only successfully plan how to end AIDS and sustain the advances made by partnering with young people living with HIV.”

“I am representing not only the voices of 1.5 million Kenyans living with HIV but all people living with HIV,” said Jerop Limo, a young Kenyan HIV activist. “I want leaders to leave New York knowing that we are not beneficiaries, we are equal rights holders. We have a voice, we have skills and expertise and we need an equal playing field where our data is valued, where our input is valued and where our voices are heard. We want meaningful and ethical engagement of adolescents and young people in all spaces of the AIDS response.”

Young people, especially adolescent girls and young women, are disproportionately affected by HIV. Globally, 44% of all new HIV infections were among women and girls (all ages) in 2023 and every week 4000 young women and girls around the world are infected with HIV—3100 are in sub-Saharan Africa. In 2023, some 3.1 million adolescents and young people (15-24 yrs) were living with HIV—1.9 million were adolescent girls and young women.

“Governments meeting here in New York cannot end AIDS alone. They need to involve us to find solutions. We have lived experiences of HIV, from treatment to mental health, because we navigate life with HIV every day. We need to be included in policymaking so that we can take full ownership of ending end AIDS as a public threat,” said Ibanomonde Ngema, a young South African AIDS activist. “The world can only benefit when young people are included in the global HIV response. No conversation about HIV should take place without us, from policy to practice in communities.”

Too often young people report facing stigma and discrimination, including from doctors and healthcare workers, when they access sexual and reproductive health and HIV services. This discourages them from seeking support and crucial information about their health, putting them at risk of HIV infection or of defaulting on treatment for those who are living with HIV.

Involvement of young people in the HIV response

Young people living with HIV play a critical role in the fight against AIDS in communities. They offer support and share important information about HIV that schools or parents might not talk about. They also challenge stigma and discrimination through social media, helping to save lives and encourage young people to stay on treatment.

They drive innovation in communities, for example, a self-funded project by the Youth Empowerment Group uses e-bikes to deliver antiretroviral medicines, food and adherence support to young people who often cannot attend clinics because their schooling hours conflict with clinic opening times in Namibia.

However, their transformational work is being held back because it is not being sufficiently supported. Youth-led HIV responses often operate with little or no financial and political support. At the UNGA the two young people will call on world leaders to fully support and fund their work. They will also urge leaders to uphold the human rights of young people as key to ending AIDS as a public health threat—they will call on them to protect young people’s right to healthcare, education, freedom of speech, and to provide social support to young people living with HIV.

“Providing treatment is not enough, young people living with HIV need an education and they need a job to survive,” added Jerop Limo. “We need to be seen as equal contributors and partners, and we need investment to allow us drive change. We are the leaders of the future and we need to be included now to help shape a better future for us all.”

UNAIDS

The Joint United Nations Programme on HIV/AIDS (UNAIDS) leads and inspires the world to achieve its shared vision of zero new HIV infections, zero discrimination and zero AIDS-related deaths. UNAIDS unites the efforts of 11 UN organizations—UNHCR, UNICEF, WFP, UNDP, UNFPA, UNODC, UN Women, ILO, UNESCO, WHO and the World Bank—and works closely with global and national partners towards ending the AIDS epidemic by 2030 as part of the Sustainable Development Goals. Learn more at unaids.org and connect with us on Facebook, Twitter, Instagram and YouTube.

Four weeks before the African Cup of Nations football tournament kicked off it was down to the wire. José Fardon, a Côte d’Ivoire web designer and digital developer, had his whole team frantically working on a special edition of an interactive health and HIV game app, called "A l'Assaut du Sida", ‘Tackling AIDS’ (AADS) to coincide with the tournament.

The UNAIDS team had secured funds for the latest rendition of the online game and had rallied UNICEF and the Global Fund to chip in.

“We had launched various versions of the game in the past, but this required a different look and feel to gel with the sporting event,” said Mr Fardon, founder of SYL.

They also needed a final approval from the National AIDS Programme (PNLS).

"Out of the many initiatives put forward ahead of the CAN, the online app really appealed to us because we knew it would not only reach the target audience, it would also make an impact,” said Eboi Ehui, PNLS Coordinating Director. “This is a generation that has never seen the ravages of AIDS so they have felt like it isn’t a problem but it is.”

The success was beyond anyone’s expectations.

The 20,000 tournament volunteers recruited by the Ministry of Youth not only played the online game themselves but they fanned out around the stadiums promoting the game by sharing the QR code with the hundreds of thousands of supporters. And with various prize giveaways during the tournament and afterwards, more and more people downloaded the app to play. Since mid-January 2024, AADS has reached nearly 200,000 adolescents and young people with the latest version reaching a lot of young boys and men (cumulatively, the three versions have reached almost 300 000 people.)

“When I think back, this idea germinated in 2016 as a tool for schools then was launched at the Francophonie Games a year later but now, we really brought it to the general public,” Mr Fardon said. “I am so proud we never gave up.”

His determination impressed more than one person.

In eight years, he convinced UNAIDS staff, the country’s Ministry of Health in close collaboration with PNLS, the Ministry of Education, the Ministry of Youth and countless partners on the ground.

UNAIDS Country Director Henk Van Renterghem, like his predecessors before him, saw the value and potential of using digital technology to reach adolescents and young people. “General knowledge about HIV and overall comprehensive sexual education has decreased and young people are struggling with so many choices that this easy to download game is without a doubt relevant,” he said.

In July 2023, he explained, the National AIDS Council was alerted by the results of a survey and beseeched HIV partners to step up communication and education efforts.

“Despite the fact that young people have more access to information through the internet and social media than ever before, many young people are struggling to make informed decisions about their sexual relations,” said Mr Van Renterghem. For example, the survey revealed that only 40% knew that medicine (anti-retroviral treatment) existed for HIV and 39% of girls (29% of boys) did not know that condoms prevented HIV transmission. Last year, 20% of new HIV infections in the country were among 15–24-year-olds, according to government data.

As a result, UNAIDS staff along with SYL, vetted and increased the number of questions expanding prevention info.

He and his staff were particularly happy because they also succeeded in expanding the scope of the content.

In went the fact that people with HIV on effective treatment can achieve an undetectable viral load and cannot transmit the virus (U=U) plus stuff about stigma & discrimination, human rights, gender equality and gender-based violence – all structural drivers of HIV.

The full game of 400 questions is like a quiz with additional information popping up. Players score points by advancing through 40 sets of ten questions. At least seven correct answers are needed to advance to the next level. It can take up to an hour to get to the last round and when the updated pilot was tested in October and November of 2023, young people responded well.

Two of the young players who scored in the best percentile agreed.

“The game really taught me a lot. There are a lot of facts about HIV and sexually transmitted diseases,” said Marie Koffi. For Wilfried Touré he said, “I learned a lot of things that I had no idea about from tuberculosis to HIV and even on a personal level I picked things up.”

Going forward national partners now want to distribute a scholastic version of the game to all Côte d’Ivoire schools.

During the final awards ceremony at the end of March, Côte d’Ivoire’s Minister of Health, Pierre Dimba, was clear.  “This fun and educational online game is a response to young people's need for true and accurate information via social media,” he said.  “The popularity of this game among teenagers is a real testimony that adapting our communication strategies to the habits and needs of young people pays off.”

In Mr Van Renterghem’s mind, Côte d’Ivoire should be proud.

“This home-grown low-cost tool will help us sustain our HIV prevention efforts as international funding will inevitably dwindle.”

That is in part why Mr Fardon and UN partners are dreaming even bigger.

“We would like to launch the app-based game in neighboring countries and eventually roll this out throughout western and central Africa,” he said.

“The sky is the limit.”

Divyanshi is an enthusiastic 18-year-old Indian girl with an inspiring personal story of courage and resilience. She was diagnosed with HIV at a very young age. She has never given up on her dreams.

“I became aware of my status around 2013-14 but it wasn’t until I moved to a care home that I understood the challenges of living with this virus,” said Divyanshi. “As a person living with HIV, I face stigma and discrimination when a friend or someone else gets to know about my positive status. But I take it as an opportunity to educate people about HIV and break their myths. I want to show the world that I can live a normal, healthy, and happy life as a person living with HIV.”

Divyanshi joined the Positive YUVA Network (PYN)—an innovative community-based organisation striving to uplift young people living with HIV—where she found support and guidance from her peers.

As a network of young people living with HIV, Positive YUVA Network is a community-based organization committed to support young people living with HIV and LGBTQI+ people in India. The organization focuses its efforts on supporting the mental health of the young people living with HIV through its “Buddy System”. This initiative acknowledges the psychological challenges experienced by young people living with HIV and supports them with professional counsellors who provide tailored assistance. 

The organization provides skills development opportunities, recognizing that empowering young people living with HIV with practical skills enhances their socio-economic prospects. Through mentorship programs, the Positive YUVA Network aims to instil confidence and self-reliance among the youth, helping young people to redefine their narrative.

At the Positive YUVA Network, Divyanshi discovered her passion for photography and with the help of her mentor, is now interning at a startup, capturing moments of joy and hope. Divyanshi is an inspiration to many in how she shows that no obstacle can deter her from chasing her aspirations.

The Positive YUVA Network also works to reduce stigma and discrimination associated with HIV by raising awareness in schools. For instance, the organization used the most recent World AIDS Day as an opportunity to initiate open discussions and correct myths about HIV and AIDS among school going children with a goal to create a supportive and inclusive environment that fosters understanding and empathy for all people. By fostering empathy and a respect for the rights of everyone, the initiative helps to advance the health of everyone.

Global HIV statistics reveal that 1 out of every 4 new HIV infections globally in 2022 were among young people (15–24 years). Recognizing this demographic vulnerability, a focus on youth-specific interventions is imperative for an effective HIV response.

This community-driven initiative, and many others like this one, is playing a critical role in removing barriers for young people to meaningfully engage in the HIV-response in India. It is a powerful example of how community-led organisations are transforming the AIDS response at grassroots level. 

“In India's HIV response, youth-led organizations infuse hope and resilience. These groups, driven by the energy and innovation of young minds, are building a more inclusive and informed society. Rights, recognition and respect are essential for public health efforts to succeed. The impact of organisations like the Positive YUVA Network is not limited to young people living with HIV and LGBTQ+ youth, it benefits everyone,” said David Bridger, UNAIDS Country Director in India. “We all need to recognize the indomitable spirit of these organizations—pillars of strength in our collective journey. Together, let us do all we can to support the vital role of youth-led initiatives as they lead us along the path that ends AIDS,” he added.