by Julie Mellin
October 1 - Amid the meetings, receptions, and planning sessions held last week during the opening of the 69th Session of the United Nations General Assembly, sat a panel of five young people passionate about realizing the rights of young people all over the world in the post-2015 agenda. The panel discussion, Leaving no one behind in the post-2015 Development Framework: Responding to the HIV and sexual and reproductive health and rights needs of young marginalized people through community empowerment, was held on September 25th and brought together youth advocates from Latin America, South Asia, and southern Africa.
H.E. Guilherme Patriota of Brazil and Dr. Luiz Loures of UNAIDS also gathered to discuss the inclusion of young people living with and affected by HIV in the post-2015 agenda. The discussion was hosted by the Government of Brazil and organized by a number of partners, including the Global Youth Coalition on HIV/AIDS (GYCA).
Moderated by Ishita Chaudhry of the YP Foundation and the High Level Taskforce for ICPD, the panel focused on young people’s sexual and reproductive health and rights (SRHR), youth-led advocacy and empowerment programming, and intellectual property law and how it affects access to treatment. These issues emerged in four key messages:
Stigma, discrimination, and inequality remain significant barriers to achieving SRHR for young people
“What’s holding us back now is the exact same thing that was holding us back then: discrimination, lack of access, inequality, intolerance.” –Dr. Luiz Loures
In speaking to his experience as a frontline doctor in the AIDS response of the 1980s, Dr. Loures noted that although attitudes have shifted in many places around a person’s HIV status, discrimination still prevents people living with HIV and other marginalized groups (such as young people, people who engage in sex work, and LGBT people) from accessing sexual and reproductive health services, and from realizing happy and fulfilling sexual and reproductive lives.
“We are missing opportunities to hear from young people because of inequality.” –S.M. Shaikat
Young people are experts on the issues that affect their lives, and they have the right to make the decisions that affect their bodies, lives, and relationships. S.M. Shaikat, an advocate for women and girls’ rights in Bangladesh since he was 16, emphasized the importance of building young people’s capacity to engage as leaders in policy and program development, rather than encouraging tokenistic participation: “It’s important [for young people] to have knowledge, information, and training, and therefore the capacity to contribute meaningfully to policy/programming.”
Ishita Chaudhry pointed out that “we need to talk about the reality and restrictions that young people face at the ground level—there is a big disconnect between that and what’s discussed most often at the UN.” Although the panel discussion took place on UN premises, it is exceedingly rare to hear young people speak like this on the floor at an official UN meeting, particularly those around the post-2015 Sustainable Development Goals. Often young people are given a few minutes to speak at the end of meetings (if time allows), a tokenistic gesture after they have traveled a great distance to share their recommendations. What young people are saying is important, not only the fact that they are speaking at all. There are young people, and occasionally marginalized people speaking at the UN in the “important rooms,” but what they’re saying is often not coming from them, they are not speaking about their own solutions and experiences, and are not speaking as experts.
Mwewa Nkhoma, a young woman openly living with HIV who works with the Treatment Advocacy and Literacy Campaign (TALC) in Zambia, shared her experience of youth-led organizations in Zambia: “The most active groups in these areas are groups of young people, yet they are the least likely to receive funding—other groups that are dealing with different populations have more funding. In Zambia there are very few groups that are working specifically with adolescents and young people living with HIV.” While many tout the importance of meaningful youth engagement, it’s imperative that we start backing up that support with funding and real seats at decision-making tables (such as Global Fund Country Coordinating Mechanisms, the Open Working Group on Sustainable Development Goals, and the UNAIDS Programme Coordinating Board).
By definition, comprehensive sexuality education must be accessible, holistic, and developed and delivered by young people themselves
In Zambia, Mwewa trains young people living with HIV on how to live their lives to the fullest while adhering to ARVs: “most young people living with HIV who are on ARVs [anti-retrovirals] do not have full knowledge on how to use them and how to manage care long-term—TALC works to address this through peer education.” Not only should comprehensive sexuality education be provided to all young people, but it should be tailored to meet the diverse needs of young people, such as young people living with HIV who still want to enjoy sex and relationships.
Pablo Aguilera, Director of the HIV Young Leaders Fund, said that “many programs on CSE or SRHR have been designed with young people in mind, in theory, but have not actually involved young people or members of key populations in that program design. For example, many CSE programs don’t address gay sexuality, or how to be safe if one is a sex worker or uses drugs. This is where we fail and how we continue marginalizing groups that are already marginalized.”
Intellectual property must become a main focus of the HIV movement
Carlo Oliveras, Regional Coordinator of International Treatment Preparedness Coalition (ITPC) Caribbean, spoke about the need to educate activists on intellectual property (IP), both because of the potential for HIV treatment access, and because it is one area that those in the HIV movement seem most afraid to dive into. ITPC conducts literacy trainings to help familiarize HIV activists with IP law and issues. Activists must strategize around how to create a policy environment that can begin to address intellectual property. If civil society played a greater role in patent decisions, and was able to influence governments deciding whether or not to allow monopolies, many more people living with HIV could have affordable access to treatment.
“What if the price of treatment and the price of other medical treatments were both reduced? What options do we have to make both more accessible and affordable, as opposed to having to choose which of the two we can afford?” –Carlo Oliveras
The conversation in the room was dynamic , participatory, and passionate, but the message was clear: those with the power and opportunity to create policies and programming at every level must listen to young people and create space for their participation. Young people know what they need and how to get it, and they must be considered experts, and included at the table. If you would like to know how to support young people’s participation and needs in your work, please reach out to any of the panelists or organizers.
 Other organizers were the International HIV/AIDS Alliance, GESTOS, ATHENA Network, ICASO, ICSS, STOP AIDS NOW!, Stop AIDS Alliance, the HIV Young Leaders Fund, the African Services Committee, and the Global Forum on MSM and HIV, in collaboration with UNAIDS.