The passion, dedication and commitment that young people are bringing to the AIDS response, driving the agenda and taking a leadership role, were celebrated by UNAIDS Executive Director Michel Sidibé in closing remarks at the AIDS 2014 youth preconference event.

Mr Sidibé commended the 200 young people assembled, and others around the world, on how they have come together in the past year to increasingly become involved in key decision-making processes and ensure investment in high-impact programmes that work for young people on the ground. He advised them to redouble their efforts and build even stronger alliances in national movements with clear political goals and promised to share their central message: treat, reform, educate, love.

The two-day event, which took place on 18 and 19 July, addressed a number of key issues relevant to young people and culminated in the development of a Youth Action Plan calling for the inclusion of their voices in all national, regional and international discussions on AIDS advocacy, policy and treatment.  

The event included a number of skills-building and knowledge exchange workshops, such as a session launching a new youth tool on participation in the Global Fund to Fight AIDS, Tuberculosis and Malaria and how to navigate its New Funding Model. The ACT 2015! plenary explored ways in which the youth sector could put the health, well-being and human rights of young people at the heart of the post-2015 agenda through advocacy at the national and global levels. 

In addition, young members of key populations debated increasing their leadership role and how to challenge stigma and discrimination more effectively. World Health Organization guidelines relevant to young people and the need to reform parental consent laws, which can deny young people access to services such as HIV testing and other sexual and reproductive health services, were also examined.  

Organized by the Melbourne YouthForce, the event was guided by the UNAIDS-supported pact for social transformation, a unifying, youth-led, collaborative international framework designed to advance the HIV-related needs of young people.

Making the money work for young people: a participation tool for the Global Fund to Fight AIDS, Tuberculosis and Malaria is available for download from the links below:

Guidelines for young activists and youth organizations

Guidelines for Country Coordinating Mechanism members and other Global Fund actors

Quotes

Today’s generation of young people is the largest in history, with 1.8 billion adolescents and youth making up one quarter of the world’s population. Young people have a critical role in ensuring that political momentum to achieve the end of the AIDS epidemic and to secure specific targets around sexual and reproductive health and rights in the post-2015 development agenda is sustained.

In order to mobilize young people to influence the post-2015 dialogue that will set the goals, targets and indicators of global development for the next 15 years, UNAIDS, in collaboration with the PACT for Social Transformation in the AIDS Response, has produced the ACT 2015! Advocacy strategy toolkit.

Developed in partnership with Restless Development, the toolkit is intended to support youth organizations to build national alliances and develop a national advocacy road map to engage with key decision-makers influential in the post-2015 negotiations. It provides background information about the Millennium Development Goals and the post-2015 development agenda, as well as a timeline of critical events within the process of developing the new framework. With step-by-step information on how young people can develop their own advocacy strategy, including setting up advocacy priorities, selecting targets, making an effective advocacy case, developing activities and designing a road map, it shows how to conduct effective advocacy in the national context.

In the first phase of ACT! 2015, a youth-led initiative based on new forms of organizing using social media and online technology, young people around the world organized community dialogues through www.crowdoutaids.org to set advocacy priorities.

To find out more, please visit www.crowdoutaids.org.

Despite the unprecedented progress made in the AIDS response in recent years, emerging evidence suggests that adolescents are falling behind as a result of not receiving the attention and services they require.

AIDS-related mortality among adolescents has increased by 50% over the past seven years, but fell for all other age groups, according to UNAIDS estimates. Two out of three people aged 0–14 lack access to HIV treatment worldwide, and recent data collected from sub-Saharan Africa indicate that only 10% of young men and 15% of young women (15–24 years) are aware of their HIV status.

To advance the adolescent treatment and care agenda, UNAIDS, the International Treatment Preparedness Coalition, the Global Network of People Living with HIV/AIDS (GNP+) and PACT brought together key treatment actors, United Nations and youth organizations and networks of young people living with HIV. During the two-day meeting, held on 16 and 17 April, participants analysed the main obstacles affecting adolescents in the AIDS response and charted an action agenda to ensure that adolescents are not left behind.

There is an urgent need to ensure that adolescents living with HIV become aware of their status and have access to effective HIV treatment and quality care programmes. Furthermore, adolescents face particular challenges to adhere to HIV treatment, lack support to disclose their status and there is an absence of information about their sexual and reproductive health and rights.

There are many reasons why adolescents may stop taking their HIV medications regularly, including their side-effects, “treatment fatigue”, self-stigma or a lack of community support. However, maintaining adherence to HIV treatment is one of the key elements for optimizing health outcomes for adolescents living with HIV. Besides its primary health benefits, taking antiretroviral treatment correctly and consistently delays the development of drug resistance and contributes to preventing the onward transmission of HIV.

“We cannot achieve zero AIDS-related deaths and zero new HIV infections if we don't focus on addressing the unique treatment needs of adolescents,” said Bactrin Killongo, from the International Treatment Preparedness Coalition. “For me, the agenda of scaling up HIV treatment should start with adolescents, especially those who were perinatally infected.”

Many adolescents living with HIV have also expressed lack of support regarding how, when and with whom to disclose their HIV status. This can lead to anxiety and depression. For members of young key populations, the situation is even more difficult, as they often face discrimination on account of the behaviour that makes then vulnerable to HIV, such as sex between men, as well as their HIV-positive status.

“Where do you go when you are discovering your sexuality as an adolescent? Very often the challenge that we face as young gay men is the double disclosure,” said Pablo Aguilera, Executive Director of the HIV Young Leaders Fund. “You have to tell people around you that you are HIV-positive and that you are gay, and this can get much more complicated when homosexuality is criminalized in your country and when you need the consent of your parents to access health care!”

Comprehensive sexuality education that is specifically catered to the unique needs of adolescents living with HIV is missing from most school and health-care settings globally. Many adolescents living with HIV are therefore left to deal with sexuality and relationships entirely on their own, leaving them isolated and fearful of sex and sexuality, while others lack sexual and reproductive health information and skills around safe sex.

“There is a need to tackle HIV prevention and treatment simultaneously and holistically among adolescents, recognizing not only their treatment and clinical needs but their emotional, physical and sexual needs too,” said Musah Lumumba, a young man living with HIV and Y+ member from Uganda.

Stigmatizing attitudes from health-care workers in relation to adolescents who are sexually active are also persistent. “As a young woman living with HIV, we often face challenges with access to sexual and reproductive health and services and adherence to HIV treatment, due to mistreatment and stigma from health-care workers,” said Consolata Opiyo, from the International Community of Women Living with HIV/AIDS. 

A call to action

After two days of intense conversations, the participants identified core priorities to move the agenda forward, including developing a network to advance an agenda for adolescents to access medicines, demanding better treatment services at the country level, with a particular focus on national antiretroviral therapy guidelines and Global Fund to Fight AIDS, Tuberculosis and Malaria proposals, implementing a science agenda to fill the current research gaps regarding adolescents living with HIV and developing a mechanism to support the scaling up of programmes around adolescents living with HIV that work.

“This is a watershed moment in the AIDS response,” said Linda-Gail Bekker, Professor of Medicine and Deputy Director of the Desmond Tutu HIV Centre. “We now have a critical mass of organizations working jointly to advance the adolescent treatment and care agenda!”

The outcome document from the meeting will be available ahead of the World Health Assembly in May 2014.