Young people make their voices heard in the HIV/AIDS response

Article, 27.11.2018

Young people are especially at risk of contracting HIV or dying because of AIDS. Youth organisations around the world are actively engaged in changing this – demanding youth-friendly HIV/AIDS health services, supporting their peers and fighting against discrimination. The SDC supported the ACT!2030 youth movement for two and a half years. This gave young people in 12 pilot countries around the world a chance to engage in HIV/AIDS discussions, politics and programmes.

A group of young people from all over the world smiling into the camera, holding a sign that reads 'ACT!2030'
They know the solutions themselves: the SDC supports the ACT!2030 youth movement in calling on politicians to provide youth-friendly HIV/AIDS services. © IPPF

Around 1,600 young people acquire HIV every day, and every 10 minutes a young person dies of AIDS. Studies show that certain population groups are at a higher risk of contracting HIV or dying of AIDS. These include men who have sex with men, transgender people, injecting drug users, sex workers as well as young women subjected to violence and oppression, and young people in general.

In some cases, restrictive laws or policies make it difficult for these groups to access information and health services; this jeopardizes progress or compounds existing problems. Sometimes groups are excluded from the decision-making process on laws and policies, which directly affect their lives. Many countries’ sexual and reproductive health services fall short of young people´s needs. Moreover, people living with HIV/AIDS still face much discrimination worldwide. These and other factors make it difficult to deliver efficient, person-centred solutions. The ACT!2030 youth movement was conceived to change this, giving young people a voice in their countries' decision-making on important HIV/AIDS-related issues.

Young people want a say

It all began with the drafting of the Sustainable Development Goals (SDGs) in 2013. This gave young people a unique opportunity to participate in reviewing the Millennium Development Goals (MDGs) and contribute to creating the new 2030 Agenda. With the help of UNAIDS, a global coalition of more than 80 youth organisations – known as the PACT – organised a meeting of national youth associations to identify a set of priorities from young people's point of view. They went on to introduce these priorities into the national consultations during the negotiations of the SDGs. The movement was known then as ACT!2015.

"The real work started after the negotiations, with implementation of the 2030 Agenda at a national level," says Susanne Amsler, programme officer at the SDC. The alliance thus decided to continue its work, changing its name to ACT!2030. From then on, it focused on ensuring meaningful youth engagement with the implementation, follow-up and review of the SDGs at country level. The goal is to ensure meaningful youth engagement with the implementation that the needs of young people are met.

ACT!2030 advocates for young people's rights to comprehensive sexuality education and the associated health services. The movement challenges governments with facts about young people's circumstances, it demands policy change and holds the authorities accountable for the promises they made. 

Support at the right time

Calling governments to account is a lengthy, complex process. To keep up the momentum and foster young people's engagement, there was a need for more support in data gathering, monitoring and advocacy. The SDC understood these challenges and decided to support the movement financially at this critical phase, following the adoption of the 2030 Agenda. The SDC believes that the most effective way to adapt youth health services to the needs of young people is by including young people themselves in the various stages of national and international decision-making. In turn, this has a positive impact on their health. What's more, active participation in decision-making processes is a right that should also be given to young people: it means engaging in dialogue with them instead of deciding on their behalf.

Young woman against a dark background stares intently into the camera.
Hayley Gleeson, International Planned Parenthood Federation (IPPF). © IPPF

"The project truly put young people in control over their own futures. The priority topics, the research design, the training of youth advocates and all the data collection was led by young people. ACT!2030 was unique in that we trusted young people as experts over their own lives, and did everything we could to make sure that youth organisations had the resources to be able to shape their communities."

Initially led by the PACT, a coalition of youth organisations, ACT!2030 has evolved into a global youth movement since 2013. UNAIDS and the International Planned Parenthood Federation (IPPF) contribute with their expertise and coordination services.

Focusing initially on 12 countries, ACT!2030 began systematically identifying key policy barriers to young people's sexual and reproductive health and rights. For this purpose, the grooup itself collected data supplementing government data. Its members produced policy briefs, issued press releases, conducted research and even made documentaries – all with the goal to achieve policy change and to hold governments accountable for the promises and commitments they made in the 2030 Agenda and in other agreements, such as the 2016 Political Declaration on HIV and AIDS.

As a result, concrete action has been taken in 12 pilot countries: Algeria, Bulgaria, India, Jamaica, Kenya, Mexico, Nigeria, Philippines, South Africa, Uganda, Zambia and Zimbabwe.

Improving youth-friendly services on the basis of concrete data and facts

Alvin Mwangi Irungu, a youth advocate from Kenya, sums up the work done by ACT!2030 as follows: "ACT!2030 strongly enabled meaningful engagement of adolescents and young people in data-driven accountability mechanisms on access to youth-friendly services, and exposed us to national and international advocacy platforms on sexual and reproductive health and rights."

In Algeria, for example, the data on access to health care for key population groups generated by the ACT!2030 national alliance resulted in a partnership between the young people of ACT!2030 and the national committee to end sexually transmitted infections (STI), including HIV and AIDS. This partnership aims to review the national strategic plan on sexually transmitted infections (STI) periodically and to demand improvements if results are not achieved.

In the Philippines, the alliance was invited to be a part of the technical working group of the National Adolescent and Youth Health and Development Programme. The ACT!2030 youth alliance also worked with the Philippine National AIDS Council and the Committee on Children and HIV/AIDS to organise a national consultation with young populations during the development of the country’s AIDS Medium Term Plan, to ensure youth voices were heard.

In addition, the data generated by ACT!2030 has been used to inform voluntary national reviews for the High-Level Political Forum (HLPF) at the UN in New York. Some national reports make specific reference to the ACT!2030 data. In Zimbabwe and Mexico, young people were even included in their national delegations to the HLPF. This is a significant development, giving young people an active and effective role in ending the AIDS epidemic. Only by including their specific needs in political forums such as the HLPF can solutions tailored to their needs be developed, with the ultimate goal of minimising the number of new HIV infections.

Young, smartly-dressed woman speaking into a microphone
Ashley Ngwenya, Zimbabwe. © Ashley Ngwenya, ACT!2030 Zimbabwe

"HLPF 2017 was a revolutionary platform for Zimbabwe's young people. We were not only heard of our own accord but also heard because of the significant gesture by the Zimbabwean government which saw myself and a young man, Ignatious Chiveso, selected to represent young people in the national delegation. This was not just to tick a box but to make a change as we were given the opportunity to make direct input of the youth voice in the VNR presentation. This for us was a win that was to open greater levels of engagement. All this was made possible by ACT!2030, UNAIDS and the PACT, the people who enabled our voice. Forever grateful for the opportunity presented by them to represent Zimbabwean young people at such a forum!"

Act!2030 setting new standards

UNAIDS monitors the HIV/AIDS epidemic worldwide. ACT!2030 prompted UNAIDS to revise its global indicators and include more information about young people: in 2017 new indicators related to age of consent to access services, comprehensive sexuality education and youth participation were included for the first time. This is an important step in the HIV/AIDS response, and all UN member states must now report these indicators. The results from the first iteration were published in July 2018.

Youth and HIV: mainstreaming a three-lens approach to youth participation

Young man Alvin Mwangi Irungu winks at the camera, smiling.
Alvin Mwangi Irungu, youth advocate, Kenya. © IPPF

"In Kenya, my team and I produced three documentaries and a policy brief on youth-friendly services, which we used to sensitise healthcare providers and to get the attention of decision-makers, so that there is a greater investment in young people’s sexual and reproductive health and rights."

The outcome of ACT!2030 has been that the realities of young people, which often went unheard due to a lack of understanding or clear evidence about their specific needs related to sexual and reproductive health and rights, are now being taken into serious consideration by decision-makers.

Through its support for ACT!2030 over two and a half years, the SDC has contributed to the provision of person-centred health services. However, it has also promoted the participatory rights of young people and the importance of including civil society in decision-making processes. Furthermore, supporting young people in the important task of holding their governments accountable can yield significant results for the HIV response and the implementation of the SDGs. The SDC supported ACT!2030 during a critical phase following adoption of the 2030 Agenda. The youth alliance is now continuing this work – sharing lessons learnt and best practices around the world, so that young people can in future have a greater say in their national policy dialogue. And so that young people around the world can claim their right to sexual and reproductive health and better protect themselves against HIV.

Jona Claire Turalde speaking into a microphone behind her official nameplate
Jona Claire Turalde, youth advocate, Philippines. © Jona Claire Turalde

"ACT!2030 became an initiative not only to respond to the need to forward the advocacy on HIV and AIDS, but to address several key youth issues on sexual and reproductive health and rights (SRHR), especially when we progressed on doing the youth data reporters' programme. Through the alliance, I came to represent the Philippines youth sector in different international platforms; it became a spark, a catalyst, for me to be a tool in expanding the advocacy and interlink with different youth advocacies and finally, share it forward and mentor other young people as well."