Nothing About Us Without Us: Governments Must Engage Youth in HIV/AIDS Response

In early June, UN member states gathered for the High-Level Meeting on Ending HIV/AIDS, a meeting convened every five years for governments to reassess their past commitments and progress made in   combating the epidemic. At this year’s meeting, governments adopted the 2016 Political Declaration, the document outlining their commitments to ending the HIV/AIDS epidemic by 2030.

While navigating this space as a young woman, the lack of youth participation was alarming, considering the adverse impact of the epidemic on young people ages 15-24: between 2005-2013, AIDS-related deaths declined among most age groups, but increased 50 percent among young people.

Governments must act immediately to halt the spread of HIV among its young populations, and young people themselves must be at the center of these efforts. But young people thus far have been noticeably absent from the decision-making process, and not for lack of trying.

Youth Voices Count (YVC), a network of young men who have sex with men (MSM) and trans activists from Asia and the Pacific, was among the few youth organization present during the High-Level Meeting.  Niluka Perera, Project Officer with YVC, explains that one of the organization’s main priorities in the HIV response is ensuring governments are investing in networks and organizations led by young people, and ensuring that youth are regarded as partners and leaders in the HIV response rather than a representational token. “Meaningful engagement has been discussed so vaguely that it has become just a tokenistic [term],” says Perera. “[O]ne thing we’ve pushed for has been involving young people as partners, as leaders, as beneficiaries so [youth engagement is present] throughout.”

While the 2016 High-level Meeting itself very plainly excluded LGBTI groups, young people, more generally, were also marginalized throughout the process. At a panel on empowering adolescent girls and young women to access health care services, only two of the 14 panelists were young people.

Young people know what’s needed to halt the spread of HIV. They need governments to acknowledge their sexual and reproductive health and rights and provide comprehensive sexuality education so they can deal with their sexuality in a positive way and have the knowledge they need to make informed decisions and protect themselves from infection.

But provision of services and information isn’t enough: Youth also face legal barriers such as age-of-consent laws when accessing sexual and reproductive health and HIV-related services. Young key populations—such as men who have sex with men, sex workers, prisoners, drug users, and transgender people—are often criminalized and exposed to violence in health care settings.  Young people need access to services and information in safe spaces that are free from stigma and discrimination. At the High-Level Meeting on AIDS, L’Orangelis Thomas Negron of the Network of Positive Youth of Latin America and the Spanish Caribbean, told the audience: “We need governments that provide for us, instead of control us, control our bodies, and control our autonomy.”

Despite the lack of space for youth to engage and lead at the High-Level Meeting, the Political Declaration did make some significant progress for youth in the HIV response. The declaration calls for ambitious targets to halt new infections among adolescent girls and young women while also calling for the elimination of barriers, stigma, and discrimination for adolescent and young people. Notably, it calls for governments to provide youth with “comprehensive education on sexual and reproductive health and HIV prevention” including knowledge of human rights, power in relationships, and gender inequality.  Although “sexuality” education is not included, this is a huge step forward from 2011’s declaration, which called for abstinence and fidelity as a means to ending new HIV infections. (A recent study concluded that abstinence-only programming is completely ineffective.)

Moving forward, these commitments are important for ensuring the HIV response addresses youth effectively. But if young people are not genuinely integrated in decision-making processes, design, and implementation of programming from the global level down to the community level, they will continue to be left behind in the response. Youth—particularly those living with HIV, young women, and key populations—know what does and does not work for them; governments must consult them if they are serious about ending AIDS by 2030.

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