Young people are critical to achieving the targets of the 2016 United Nations Political Declaration on Ending AIDS. While young people living with HIV are playing an active role in the AIDS response by providing information, care and peer support, their networks need more support and resources.

To advance efforts to engage young people living with HIV in decision-making on issues that affect their lives, 40 young people from 19 countries representing networks of young people living with HIV met in Cape Town, South Africa, on 19 and 20 June. The Intergenerational Summit for Positive Youth Leadership was held with support from UNAIDS, the Adolescent Treatment Coalition and partners.

The objectives of the meeting included analysing the capacities of networks of young people living with HIV, identifying barriers and opportunities for participation and facilitating a dialogue on how young people living with HIV, and their networks, can be strengthened.

Attending the meeting was Yana Panfilova, a young leader from Teenergizer!, the Ukranian and Eurasian Union of Adolescents and Youth Organizations. She said, “Interruptions and lack of motivation for antiretroviral therapy, discrimination and self-stigma, lack of quality prevention education and barriers to access HIV testing are key challenges faced by adolescents living with HIV in eastern Europe and central Asia.”

Chinmay Modi, a board member representing youth and adolescents in the National Coalition of People Living with HIV in India, said, “Stigma and discrimination remains a key barrier to engaging adolescents and young people living with HIV in the AIDS response.”

While young people are advocating for greater political commitment and action to address the challenges, they are also responding to them through their networks. Moises Maciel, a representative of the National Network of Adolescents and Youth Living with HIV/AIDS in Brazil, said, “The main mission of our social movement is to group, welcome and support adolescents and young people living with HIV. We advocate and take action to strengthen public policies against the stigma and impact of HIV.”

Carlo Andre Oliveras, Coordinator of the Adolescent HIV Treatment Coalition, said, “We see that the majority of work is done by adolescents and young people on a volunteer basis without any financial support and mentorship. This meeting is a start to assess where we are in our movement. Today, the world is facing many challenges; we should not lose sight of the opportunity to make things better.”

“My take-away message from this meeting is that every network can improve their work if we have a more horizontal coordination, if we share our accomplishments and failures, our success and difficulties. I am leaving this meeting feeling empowered, and as soon as I am back in Brazil I’ll use this power to change things for real,” said Mr Maciel. 

Young people living with HIV have, with support from UNAIDS and youth leaders, begun an innovative and unprecedented partnership to strengthen South–South collaboration between networks of young people living with HIV in Latin America and the Caribbean and in Africa.

Young people living with HIV in both regions have for a long time organized in national and regional networks to advocate for increased access to HIV services. Now, through a new joint initiative called the 10 Questions Project, they will assess the organizational, advocacy and outreach capacities of networks of young people living with HIV globally, using social media tools, online surveys and in-depth interviews.

Through the initiative, lessons will be learned from each region’s ongoing efforts and from how young people living with HIV in each region participate in the AIDS response. The 10 Questions Project will outline and commit to common advocacy strategies and identify solutions to the challenges faced by young people living with HIV. The assessment will aim to better inform partners and key stakeholders, including donors, on investment choices for strengthening networks and organizations of young people living with HIV.

This joint effort between regions aligns with #uproot, a recently launched youth-led political agenda to end AIDS by 2030, which highlights the need to innovate and reinvigorate partnerships within the youth movement working on HIV, including between youth networks from countries in the global South.

UNAIDS is working to ensure that the world keeps its commitment made in the United Nations Political Declaration on Ending AIDS that 90% of young people have the skills, knowledge and capacity to protect themselves from HIV and have access to sexual and reproductive health services by 2020.

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YouTubers, influencers and virtual activists took part in inspirational conversations about HIV and discrimination in São Paulo, Brazil, on 30 May.

“No one in my group of friends and very few of my generation know anyone who died because of AIDS. Because past generations lived and witnessed so many AIDS-related deaths, there was this culture of fear, which is no longer present among us. However, we have not replaced this culture of fear with anything more positive,” said young Brazilian YouTuber Murilo Araújo, who describes himself in his channel, Muro Pequeno, as, “Proud to be gay, black, catholic, proud to be resistance in a society that tells me all the time that I cannot be any of that.”

Taboos, stigma both within and against the gay community, discrimination against people living with HIV and communicating to a highly connected generation were some of the topics debated. The event was moderated by renowned journalist and UNAIDS Goodwill Ambassador for Brazil Glória Maria, who asked, “Why do you think the HIV epidemic seems to be rebounding among young people, especially among gay men?” to trigger the first conversation.

“We saw all this in our biology classes, we saw it in campaigns. But it’s really hard to associate what they teach us with our real life, with relationships, with affection and with sexual experiences. I think this is the missing link we are trying to connect with our work on YouTube,” said actor and YouTuber Gabriel Estrela, from the Projeto Boa Sorte channel. “It seemed like something very distant from my reality, something that only happens in the movies.”

New HIV infections have grown substantially among young men, especially young men who have sex with men, in Brazil in the past decade. According to data from the Ministry of Health, they almost tripled among youth aged 15 to 19, and more than doubled among those aged between 20 and 24.

Nathan Fernandes, the Editor of Galileu Magazine, one of Brazil’s most influential monthly magazines among young people, said that, “The press played a very important role at the beginning of the epidemic. The first cases were reported even before civil society was able to organize itself for a common response. The problem is that the same press also reinforced stigma and discrimination by describing AIDS as the “gay plague” or “gay cancer”, among other things. We are now very aware that we have to be very careful with what and how we report,” he added.

As gay social networks become popular, discussions about HIV and prevention tend to gain the spotlight, said André Fischer, Director of Hornet Brazil. “We can’t run away from the fact that AIDS is still an important issue for the gay community. It is still a strong taboo subject. But we see more and more people being able to come out and reveal their HIV-positive status.”

Digital activist Matheus Emilio said it is possible to include HIV in the discussions of social networks and help break stigma and discrimination around the subject. Mr Emilio runs the Facebook page Menino Gay, with a focus on the lesbian, gay, bisexual, transgender and intersex community, whose posts reach more than 600 000 followers. “Besides talking about culture, music and lesbian, gay, bisexual, transgender and intersex rights, I also include information on HIV, health and prevention”, said Mr Emilio, who was diagnosed HIV-positive two years ago.

“Our goal is to promote connections among people and to promote a debate on HIV, with a focus on young gay men and other men who have sex with men, going beyond the point of view of science, health and public management. We want to create a debate involving young people, society, digital culture and human rights within the universe of young gay people,” said Georgiana Braga-Orillard, UNAIDS Country Director for Brazil.

The series of debates, #EseFosseComVocê? (What if it happened to you?), was organized by UNAIDS in partnership with the British Embassy in Brazil, Ogilvy Brazil, Hornet and Cultura Inglesa. The event, which was live-streamed on several accounts on Facebook, reached more than 300 000 online viewers. 

GRASSROOT HERO SERIES
UNAIDS brings you stories of people on the ground bringing about change in the AIDS response. We thank them for being unsung heroes. AIDS is not over, but it can be.

A gaggle of girls shuffle into Florence Anam’s office for their monthly mentoring chat. She has put out snacks and assembled chairs in a circle. To get the conversation started, she asks the 16 girls to describe their happiest memory and their saddest moment and what their actions were at both of those times. A few describe their carefree childhoods and their world crumbling when they found out they were living with HIV.

Ms Anam, who works for the International Community of Women Living with HIV in Kenya, sees a pattern after about five responses and asks, “Who has felt so low that they wondered if they could carry on?”

Fifteen of the 16 girls raise their hands.

“I am so disturbed to see how young people are so depressed and how this will affect them in their adulthood,” she says. “We need to give our kids a reason for living.”

Her determination is deeply rooted.

Eighteen years ago, at the age of 19, Ms Anam became pregnant. As a teenager she had been flattered by an older man showering her with attention. A good student in school and just about to start university, her parents told her that they were disappointed in her, but never brought up the subject again.

“When I was pregnant, there were never any questions of how I got in this situation or who was responsible,” Ms Anam said. “Sex was a taboo topic and not a discussion that parents had with their children.”

Her mother took her to a clinic, and she describes being stared at. At the time, she thought the doctor was probably wondering how such a young woman could be pregnant, but she now thinks they were hiding things from her.

“The health system, I believe, was not equipped to deal with young people like me at the time. I remember the staff talked to my mother more than me,” Ms Anam says.

Ms Anam thinks the doctors informed her mother that she was HIV-positive, although they didn’t tell Ms Anam that she was. She recalls her mother telling her to stop breastfeeding her baby son, although the teenage girl just thought it was because she had to go back to school, which she did seven days after delivering her baby.

In 2006, during a national Kenyan HIV prevention campaign, she and four other friends went to get tested. “I wanted to prove people wrong and wanted to just come out of that testing centre and scream I was HIV-free,” she says. When the HIV tests confirmed she was living with HIV, she was shocked.

Ms Anam says the real impact of her HIV-positive status came a year later, when she needed to get an HIV test to qualify for health insurance at a new job. The day the results came back, she had a termination letter on her desk.

“It hit me that I would not achieve my dreams, I felt really sad that all the dreams my parents had for me could not come to pass because I was not going to be able to work,” Ms Anam says. “I sank into a hole.”

She stopped socializing, distanced herself from her family and felt utterly lost and angry.

“Back then, there were no HIV networks for young people, neither was there as much information available, so I contacted a woman who had been featured in a newspaper and lashed out at her, asking, “Why am I not allowed to be productive if I am not sick yet?”” explains Ms Anam.

The woman, Asunta Wagura, happened to be the Director of the Nairobi-based Kenya Network of Women with AIDS. Ms Wagura asked her to come in and see the organization, for which Ms Anam then started volunteering. She describes the experience as a serious reality check. She heard other women’s stories, of how many of them lived in poverty and dealt with violence.

“It was like plunging into this world that as a protected child I never even knew existed; all of a sudden my problems became trivial and I knew I needed to let other people know what I was seeing every day.”

She also became more vocal about HIV, bringing a lot of attention to herself and her status.

“I was done with having people dictate to me what their opinions about my life were, I missed the girl that I was and I desperately needed to get out that hole,” she says.

Over time, she learned to take control of her life.

“Part of my family was supportive, but another looked down upon my decision,” Ms Anam explains. “When my sister said to me that I had found a purpose, I did my first media interview.”

And she never looked back.

The turning point for Ms Anam came when she realized that she too had a story to tell and so she started writing. It was not only therapeutic—it inspired others.

She accompanied Ms Wagura and spoke to her peers.

It is that mentorship that Ms Anam says enabled her to grow to be the person she is today.

She started a support group of young people in 2008 and the members continue to be a part of her life.

Ms Anam worked in the private sector in an HIV workplace programme, where she implemented strategies for HIV prevention and expanding health services. “These were the best years, because I was able to go back to the system that had shown me what stigma could lead to and I helped fix things.”

She then joined the Kenya Empowerment Network of People Living with HIV to coordinate a national advocacy and communication portfolio. Now working in advocacy and communications for the International Community of Women Living with HIV, she considers that she lives a full life and is bringing up her 17-year-old son and 11-year-old adopted daughter. They chide her for bringing up sex and other “awkward” subjects at the dinner table.

“I am like the weird mother speaking about sex and responsible sexual behaviour in the most insane places,” Ms Anam says. “I keep repeating to them that decisions you make now, however immature, will have a long-term impact.”

“I want to raise their consciousness regarding their life 20 years down the road,” Ms Anam says. She tells young people that she is one of the lucky ones, because she bounced back.

She also believes that families and communities need to better address the needs of 19–24-year-olds and encourage an open dialogue and mentorship.

Ms Anam thinks that parents believe that once their children get to 18 they are okay and do not need any guidance and support, yet many mistakes are made after that age. Ms Anam explains that young people need to love themselves and appreciate that, whatever experiences they go through, it’s a lesson for life.

Helping others gives her a purpose. In addition, she adds, “I want to stop one more person going through what I went through, and if they have gone through the same thing, then I want to help them get their life back on track.” 

Sexual and reproductive health and rights information, education and evidence-informed data are key to ensuring that young people know how to protect themselves from HIV and access HIV testing and treatment. This was the main message from an event—Breaking Down Barriers to Youth Empowerment—organized by the Permanent Mission of Denmark to the United Nations in Geneva and UNAIDS and held on 24 May, on the sidelines of the 70th World Health Assembly.

The event provided a platform for young people to be at the centre of the discussion, with a call to double efforts in scaling-up and ensuring adequate access to quality sexual and reproductive health and rights information.

The participants noted that access to clear, accurate and evidence-informed information and education supports the capacity of young people to protect their health, rights and dignity and to stand up to discrimination and violence. It also serves as a critical stepping stone for accelerating socioeconomic growth and progress. Yet, there are major barriers and challenges that must be addressed.

In many settings, access to sexual and reproductive health and rights information is constrained by legal and policy barriers, such as parental consent requirements for adolescents and youth to access services, including HIV testing. In countries with high levels of early and forced marriage, spousal consent requirements also put young women and girls at increased risk of HIV infection.

The participants concluded that limited access to accurate, high-quality, evidence-informed information, education and data on sexual and reproductive health and rights jeopardizes young people’s health and survival.

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The International Federation of Medical Students’ Associations (IFMSA), meeting in Geneva, Switzerland, ahead of the 70th World Health Assembly, has launched a Declaration of Commitment to Eliminate Discrimination in Healthcare Settings.

During the meeting, which took place from 17 to 21 May, medical students, young people living with HIV and young key populations discussed the ongoing challenges that young people face in the context of discrimination in health-care setting and identified potential areas of collaboration.

The declaration, which endorses the UNAIDS Agenda for Zero Discrimination in Health-Care Setting, calls on governments, civil society and other partners to work together for non-discrimination and reaffirms IFMSA’s work in strengthening partnerships with young people living with HIV and young key populations.

The declaration will evolve into a memorandum of understanding between IFMSA and youth organizations and networks working on HIV to define specific activities to contribute to the elimination of discrimination in health-care settings.

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The PACT, a coalition supported by UNAIDS of more than 25 youth organizations and networks working on HIV, has launched a youth-led political campaign to respond to the barriers that put young people at risk of HIV.

Launched through a Twitter chat at the World Health Assembly, #uproot is a campaign running until the end of 2020 that is developed and powered by and for young people everywhere. It aims to increase the visibility of the root causes of risk and vulnerability, including inequities, violence, exclusion and stigma and discrimination, that jeopardize young people’s health, access to HIV and sexual and reproductive health services and rights and the sustainability of the AIDS response.

The campaign will focus its efforts on three strategic areas—challenging harmful legal and policy barriers that deter young people from accessing services, supporting youth participation in the HIV response and strengthening innovative partnerships between networks of young people.

Among the activities planned for this year, #uproot will develop scorecards on the progress achieved by countries on the issues that matter and affect young people the most, crowdsource recommendations to inform the design of youth-friendly HIV and sexual and reproductive health services, map and support youth participation in community responses and establish strategic alliances with medical students and parliamentarians and between youth networks from different countries and regions.

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In the lead-up to IDAHOT (the International Day against Homophobia, Transphobia and Biphobia) 2017, UNAIDS spoke with Kene Esom, the Executive Director of AMSHeR. AMSHeR promotes non-discrimination, particularly discrimination based on sexual orientation and gender identity, and advocates for access to quality health services for lesbian, gay, bisexual and transgender people in Africa.

Question: Tell us about the changes across the African continent since AMSHeR started nine years ago

AMSHeR was established to address discrimination and human rights violations based on sexual orientation and gender identity, the disproportionate vulnerability to HIV of men who have sex with men and the policy and social barriers that hinder access to services for lesbian, gay, bisexual and transgender (LGBT) people in Africa.

African LGBT people are bringing the issues of sexual orientation, gender identity and human rights into regional and global policy and legal spaces and are making the African LGBT experience the basis of policy, service delivery and funding decisions on Africa.

Never before has there been more visibility and interest in LGBT issues and understanding of the experience and needs of African LGBT people and effective representation of African LGBT communities in the global discourse. This is largely because of AMSHeR’s courageous mandate to make African LGBT people the faces and voices of inclusion in Africa and by so doing put LGBT inclusion on the agenda of African states and policy-makers as well as human rights and social justice movements.

Question: What made you focus your recent campaign on engaging with faith leaders?

It is widely accepted that religion and religious leaders have a great influence on political leaders and in African society. The widespread intolerance, discrimination and violence against people based on their real or perceived sexual orientation, gender identity and expression, and lack of access to health services, may be attributed to a highly religious environment that has normalized heterosexuality and patriarchy while demonizing sexual diversity.

Religion-inspired discrimination is very rife, particularly in Africa. The experiences of African LGBT people have been varied, from torture and inhumane treatment in the form of exorcism and conversion therapy, to mob violence incited by religious leaders from the pulpits, to the experiences of religious leaders sitting on national health agencies blocking attempts to provide health and rights services to LGBT people, to religious leaders actively sponsoring discriminatory legislation. 

Religious leaders, because of their respected positions in society, are critical in addressing issues of stigma and discrimination as well as upholding the rights of all people regardless of sexual orientation, and, even more importantly, have emerged as strategically placed in discourses on HIV, sexuality and spirituality.

AMSHeR appreciates the role that religious leaders play, but at times they perpetuate discrimination based on sexual orientation and gender identity, and that is why, since 2015, under our Integrating Spirituality and Sexuality project, we have been working with religious leaders and LGBT people of faith to address these issues.

We have partnered with leaders of faith-based communities to initiate dialogue between institutions and LGBT communities in order to find common ground to integrate spirituality and sexuality. This has been done following lessons learned on how faith-based organizations have been integral in advocating for non-discrimination and stigma against people living with HIV. Faith-based organizations have proved to be allies to many civil society organizations in pushing for non-discrimination and stigma against people living with HIV.

As part of its work, AMSHeR has released a documentary, Queer Voices of Faith, for IDAHOT 2017.

Question: You are a Nigerian working in South Africa for a pan-African organization. What motivates you?

Whether in Nigeria, South Africa, Mozambique or Morocco, I am amazed at the remarkable kindred spirit that connects African societies. I consider myself a pan-Africanist, I believe there is more that connects us than otherwise, despite our diversities, and I celebrate Africa’s diversity and the values that unite us.

AMSHeR has been a perfect vehicle to express my pan-African ideals and promote the quest for social justice across Africa.

Question: What do you see as the future on the continent for LGBT people?

The future of LGBT people in Africa is to strengthen the movement that is now under way in which LGBT people, their leaders and other advocates are steadily seeking to realize their fundamental human rights, including the rights to equality and non‐discrimination, the highest attainable standard of health, freedom of expression, freedom of association and assembly, freedom from unlawful arrest and detention and equal access to justice.

I see a future and it is a bright one. A lot has changed since 2009, when AMSHeR came into operation. We have taken and continue to take incremental steps towards achieving the full inclusion of African LGBT people as equal citizens of Africa. The tide is flowing in one direction and it is in the right direction.

Question: This year’s theme for IDAHOT is family. What does family mean to you?

Family is a bond of love as opposed to biology and all families, in whatever shape or form, should be afforded the same protection and recognition from a legal and ideological perspective. Africa is replete with different expressions of family and we celebrate the role that families play in shaping society. It is also imperative to acknowledge that it is through families that we can reframe respect for diversity and unlearn the prejudice that is at the root of the discrimination that LGBT people face today.

GENEVA, 17 May 2017—UNAIDS’ vision of zero discrimination and ending AIDS by 2030 will only become a reality if the response to HIV reaches everyone, including lesbian, gay, bisexual, transgender and intersex (LGBTI) people.

The International Day against Homophobia, Transphobia and Biphobia (IDAHOT), a worldwide celebration of sexual and gender diversity, is commemorated annually on 17 May. This year’s theme is families, focusing on the role of families in the well-being of LGBTI people and respect of the rights of LGBTI families.

“Many young gay and transgender people are rejected by their families, living on the streets, facing all types of discrimination and violence,” said the Executive Director of UNAIDS, Michel Sidibé. “This is not the path to healthy and productive societies. We must encourage inclusion and compassion and ensure that networks of support are in place, including access to essential health and social services.”

Gay men and other men who have sex with men are 24 times more likely to acquire HIV than other men and transgender people are 49 times more likely. However, in many health-care settings, LGBTI people find it difficult to access quality health services free from discrimination, making them more vulnerable to HIV and less likely to access treatment and care.

Under international human rights law, countries have a legal obligation to address discrimination in health and in the workplace. In 2016, UNAIDS launched an Agenda for Zero Discrimination in Health-Care Settings, which brings together all stakeholders for joint efforts towards a world where everyone, everywhere, is able to receive the health care they need with no discrimination.

UNAIDS is calling for respect for diversity and zero discrimination. To end AIDS it is essential to end the stigma and discrimination faced by LGBTI people.

UNAIDS

The Joint United Nations Programme on HIV/AIDS (UNAIDS) leads and inspires the world to achieve its shared vision of zero new HIV infections, zero discrimination and zero AIDS-related deaths. UNAIDS unites the efforts of 11 UN organizations—UNHCR, UNICEF, WFP, UNDP, UNFPA, UNODC, UN Women, ILO, UNESCO, WHO and the World Bank—and works closely with global and national partners towards ending the AIDS epidemic by 2030 as part of the Sustainable Development Goals. Learn more at unaids.org and connect with us on Facebook, Twitter, Instagram and YouTube.

A new campaign called #Live2LUV aims to promote information on sexual and reproductive health, including HIV, among young people in South-East Asian countries. UNAIDS, along with regional networks of young people, Youth Lead and Youth Voices Count, and the United Nations Children’s Fund and the United Nations Population Fund, launched the campaign during the four-day Association of Southeast Asian Nations (ASEAN) Youth Summit in Manila, Philippines, which ends on 29 April.

“The #Live2LUV campaign will help to inspire, promote and educate young people on sexual and reproductive health and rights and HIV, as well as reduce stigma towards young key populations in the Association of Southeast Asian Nations region,” said Junelyn Tabelin of Youth LEAD.

In the Asia and Pacific region, young people (15–24 years old) account for 37% of new HIV infections. Data show that young people from key populations are at even higher risk of HIV infection than their older counterparts. For example, in Thailand, among young gay men and other men who have sex with men HIV prevalence is 11%, compared with 8.3% among gay men and other men who have sex with men who are 25 years and older.

According to behavioural studies in eight countries, comprehensive knowledge of HIV is low in many South-East Asian countries.

“I didn’t have the right information on HIV and I didn’t know how to protect myself,” said Relly Manlapaz, a 17-year-old transgender woman, who participated in a UNAIDS session at the youth summit. “Before joining the HIV advocacy work, I used to believe that one could get HIV through mosquito bites and by sharing utensils with someone living with HIV,” she added.

The #Live2LUV campaign will use social media to disseminate information on HIV prevention and treatment, and will encourage an enabling environment for young key populations with messages encouraging understanding, acceptance and zero discrimination.

The regional partners will work with local organizations in each of the 10 ASEAN countries to clear up misunderstanding about HIV and provide information in a youth-friendly manner. The campaign will cover different key HIV themes, as well as create a forum for young people to share their stories. A platform has been developed to host all the campaign materials and resources at www.hivandyouth.org. The eight-month-long social media campaign will culminate on World AIDS Day and will garner support from celebrities and influencers on social media.

UNAIDS is working with countries to ensure that, by 2020, 90% of young people have the skills, knowledge and capacity to protect themselves from HIV and have access to sexual and reproductive health services.