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.”