Young people

Current inequalities in HIV testing and treatment for children living with HIV and trends in historical coverage of services to prevent vertical (mother-to-child) transmission of HIV are driving year-on-year trends in AIDS-related mortality.

Reductions in AIDS-related deaths among children and adolescents are steepest among children aged 0 to 9 years (a 60% decline since 2010), reflecting both improvement in efforts to prevent new vertical infections and efforts to diagnose and treat children in the months following childbirth and during breastfeeding.

However, among adolescents (aged 10–19 years), progress is slower, with AIDS-related deaths declining just 37% over the same period.

The single biggest paediatric treatment challenge is to rapidly find children living with HIV who were missed at birth or during breastfeeding and link them to care. Scale-up of rights-based index, family and household testing and self-testing, and integrating HIV screening with other child health services, can help close this gap. 

“We are demanding that you step up and finally do your part,” said Yana Panfilova, a young female activist from Ukraine who is living with HIV, at the United Nations High-Level Meeting on AIDS in June 2021.

A leader of the regional adolescent-led movement Teenergizer, she emphasized the vulnerability of young people to HIV and the need to provide care and support to adolescents living with HIV and she called on world leaders to keep young people at the forefront of the AIDS response.

“If we are going to make real change, these four things must become a reality: comprehensive sexuality education in all schools, in all countries; psychosocial support and peer support for every adolescent with HIV and young key populations; community-led HIV services immediately as the reality, not the exception; and an HIV vaccine and a functional cure,” Ms Panfilova added.

All these recommendations are critical in eastern Europe and central Asia, which is facing the world’s fastest growing HIV epidemic. At end of 2020, there were 60 000 young people aged 15–24 years living with HIV in the region. Many young people remain unaware of their HIV status, and late HIV diagnosis remains a significant challenge in the region.

There are multiple barriers and obstacles in almost all countries in eastern Europe and central Asia for adolescents and young people to access HIV services and care. In many countries there is an absence of adolescent-centred HIV testing and counselling, there are requirements for parental consent for HIV services, there is a lack of access to modern contraceptives and there are confidentiality issues and stigma and discrimination. Harmful norms, taboos related to sexual and reproductive health, inequalities, gender-based violence, COVID-19-related obstacles and mental health problems are further barriers to access to HIV services.

Although significant progress has been achieved over the past 30 years in providing adolescents and young people in eastern Europe and central Asia with access to sexual education and other services, the level of knowledge about HIV prevention among people aged 15–24 years in the region remains low—as low as less than 3% in Tajikistan.

Different approaches have been used by civil society and community-led organizations to reach young people who are vulnerable to HIV. For example, the Dance4life project in Belarus, Kyrgyzstan, Kazakhstan, the Republic of Moldova, the Russian Federation and Ukraine reaches vulnerable young people with the Journey4Life Programme (J4L). J4L helps adolescents aged 14–18 years develop healthy interpersonal relationships that are free from violence and coercion and based on respect for gender equality and teaches them how to maintain their sexual and reproductive health, focusing on the prevention of HIV, unplanned pregnancy and sexually transmitted infections. It aims to reach 1400 young people by the end of 2021 in Kazakhstan and Kyrgyzstan, with support from UNAIDS and the United Nations Educational, Scientific and Cultural Organization.

A recent survey among adolescents run by Teenergizer showed that the availability of HIV treatment for adolescents is not enough to keep them alive. Treatment interruption is a significant reason why adolescents continue to die in the region. According to the survey, HIV-related fears, psychological vulnerability, treatment fatigue and stigma are significant risk factors for treatment interruption among adolescents. The survey noted that they need support from their peers, communities and doctors, and they often need professional psychological help. 

In her United Nations High-Level Meeting on AIDS speech, Yana Panfilova remembered Diana, who recently died of an AIDS-related illness. “This year, I was angry when we lost Diana. She was only 19, born with HIV. But she had pills that were impossible to take, no mental health support and no confidentiality. Like millions of people with HIV, she was killed by inequalities. Millions of people with HIV may have HIV pills, but they live in a world where their families and their societies do not accept them for who they are.”

Svetlana Izambayeva, who organizes It’s simple!  summer camps for children and adolescents living with HIV in the region, explained that adolescents living with HIV are often socially isolated and lonely—they are scared to talk about their diagnosis and fear for their future. The camp’s attendees receive psychological care and support, create networks and support others. 

“We need more political leadership, more data on adolescents and young people, more programmes to address the gaps and more funds for the youth response. But here in the region we already have a growing movement of adolescent and young leaders which we must nurture, fund and further support,” said Lena Kiryushina, the UNAIDS Youth Officer for eastern Europe and central Asia.

School-based comprehensive sexuality education plays a vital role in promoting the health and well-being of children and adolescents, both now and in their future. It improves sexual and reproductive health outcomes, including for sexually transmitted infections and HIV, promotes safe and gender equitable learning environments and improves access to and achievement in education.

In a preview of the upcoming global report on the status of comprehensive sexuality education, more than 700 people joined an online event opened by Stefania Giannini, the Assistant Director-General, Education, for the United Nations Educational, Scientific and Cultural Organization (UNESCO). While some progress has been made, she noted that there’s still a long way to go and underscored comprehensive sexuality education as one of the key priorities for action to achieve gender equality.

People attending the event heard the perspectives and recommendations of young activists for sexual and reproductive health and rights and case studies from Sweden, Tunisia and Namibia, together with engagement from policy-makers on how they are working towards ensuring quality comprehensive sexuality education for all young people. 

“Like all journeys, the road towards comprehensive sexuality education is long, and sometimes winding, but it is leading us on the path to brighter, healthier futures for our young people,” Ms Giannini said.

The panel of young people collectively called for the recognition of education as a fundamental right, the need for strong implementation with proper financing and sufficient monitoring and evaluation and truly comprehensive curricula that respond to the needs of all young people.

Shannon Hader, the UNAIDS Deputy Executive Director, Programme, addressed the meeting, referring to the new Global AIDS Strategy 2021–2026 and the 2021 United Nations Political Declaration on AIDS and the importance of comprehensive sexuality education to both. “Comprehensive sexuality education is a necessary core intervention—to prevent HIV among young people and also to empower young people to recognize and address issues of violence, sexual abuse and elements of their overall sexual health and well-being. Importantly, gaps in comprehensive sexuality education knowledge are not equal. Inequalities exist based on where young people live, levels of family income or education, digital access and degrees of gender inequality in the community. The global AIDS strategy recognizes we must end inequalities to end AIDS.”

The comprehensive sexuality education global status report is a collaboration between UNESCO, UNAIDS, the United Nations Population Fund, the United Nations Children’s Fund, UN Women and the World Health Organization (WHO), with support from governments and civil society. The report provides a snapshot of the status of school-based comprehensive sexuality education around the world, which can help to inform advocacy and resourcing efforts, as governments and partners work towards the goal of ensuring that all learners receive good quality comprehensive sexuality education throughout their schooling.

“For governments and international stakeholders, we want you to stand up, speak out, change the rules and allocate resources for comprehensive sexuality education,” said Reuben Avila, the Director of Sin Control Parental and a She Decides young leader from Mexico.

The event was held in the lead-up to the Generation Equality Forum (GEF), which will be held from 30 June to 2 July and which will launch a series of concrete, ambitious and transformative actions to achieve immediate and irreversible progress towards gender equality.

”Bodily autonomy and sexual and reproductive health and rights” is one of six Action Coalitions that will be established during the GEF. Among the three actions agreed to for the Action Coalition, the first is to ”Expand comprehensive sexuality education”, with the goal of increasing the delivery of comprehensive sexuality education in and out of school to reach 50 million more children, adolescents and youth by 2026. The goal is fully supported by the Global AIDS Strategy 2021–2026, which has a target to reach 90% of all young people with comprehensive sexuality education.

“For meaningful engagement of young people, we have to make sure they have ears, eyes and teeth. The ears mean that young people are aware of their entitlements, voice means that they can advocate for these rights and entitlements to be met by duty-bearers and the teeth means that young people can hold the duty-bearers accountable for doing so,” said Marina Plesons, a technical officer on adolescent sexual and reproductive health and rights at WHO.

Since the United Nations High-Level Meeting on Ending AIDS in 2016, the young key populations’ movement and its visibility have grown considerably in Asia and the Pacific. Through their engagement with national and regional networks of key populations, more and more young people have taken up space in decision-making processes and in mobilizing resources to support local and national organizations. However, despite those important efforts, more needs to be done to meaningfully engage young key populations in the HIV response as leaders, beneficiaries and partners.

UNAIDS data from 2019 alarmingly shows that 27% of all new HIV infections in Asia and the Pacific were among young people. Young gay men and other men who have sex with men accounted for 52% of all new HIV infections among young people. Overall, 99% of new HIV infections among young people were among young key populations and their partners.

A side event held on the sidelines of the United Nations High-Level Meeting on AIDS, held in New York, United States of America, and online from 8 to 10 June, looked at the progress made and challenges in the HIV response and emphasized the critical role of young people in leading change and promoting successful and innovative approaches to the HIV response.

The speakers and panellists stressed that significant barriers exist for young key populations to access HIV testing, treatment and prevention services and routine sexual and reproductive health and rights services in the region. Those barriers include a limited availability of differentiated HIV services for young key populations, stigma and discrimination, punitive laws and other legal barriers that leave young key populations on the margins and out of reach of HIV services.  The COVID-19 pandemic continues to widen existing inequalities and service gaps, but thanks to the engagement of community-led organizations, populations at higher risk of HIV, including young key populations, were able to access essential HIV and health services.

The speakers and panellists noted that young people are showing us the way to revolutionize HIV prevention and increase the uptake of HIV services by implementing new strategies and innovations that cater to the specific needs of young people. During the COVID-19 pandemic, organizations led by and serving young people, such as the Lighthouse Social Enterprise in Viet Nam and the Human Touch Foundation in India, have been at the forefront of the HIV response, providing HIV services in partnership with the local government to the communities that need them the most.

The team at the Human Touch Foundation, a community-based organization in Goa, India, that provides care and support to adolescents living with HIV has, since the start of the COVID-19 pandemic, organized volunteers to deliver antiretroviral therapy to people’s doorsteps. Moreover, the organization played a critical role in getting the local government to waver public transport costs to ensure that people living with HIV had access to treatment. With the increased anxiety and depression brought on by the COVID-19 pandemic, the Human Touch Foundation offered psychosocial support services to adolescents living with HIV, both in the form of online counselling and in-person consultations.

Similarly, the Lighthouse Social Enterprise, a lesbian, gay, bisexual, transgender and intersex (LGBTI) organization led by young people based in Hanoi, Viet Nam, has been instrumental in providing differentiated service delivery to young key populations during the COVID-19 pandemic. Some of the services it provides at its clinic include HIV counselling and testing, post-exposure prophylaxis, pre-exposure prophylaxis and antiretroviral therapy. The Lighthouse Social Enterprise also established a referral service to ensure that young key populations are linked with other health services, such as sexually transmitted infection testing and treatment, mental health support and harm reduction services. What makes the Lighthouse Social Enterprise unique is that the clinic is entirely run by young people. Health-care workers are given training by the Lighthouse Social Enterprise team on LGBTI and key population needs and issues in order to ensure that services are youth-friendly and free from stigma and discrimination. Last year, the Lighthouse Social Enterprise provided services to more than 3000 members of young key populations in Viet Nam.

The side event was an opportunity for different organizations led by and serving young people working on HIV-related issues to share experiences and define common strategies to keep HIV on the political agenda at the national and municipal levels.

For Vanessa Chaniago, a young transgender woman living in Jakarta, Indonesia, the first few months of the COVID-19 pandemic were filled with fear. “I was really struggling to make ends meet. I had been working for a civil society organization, which was a great place to learn and develop strong networks, but unfortunately the income was not sufficient to sustain me and my family. My income drastically declined,” she said.

According to a survey conducted by the Crisis Response Mechanism (CRM) Consortium of 300 lesbian, gay, bisexual, transgender and intersex (LGBTI) people in Indonesia, the COVID-19 pandemic has caused most LGBTI people to have experienced layoffs or reductions in income or to close their businesses. Most LGBTI people work in sectors with a higher risk of COVID-19: 20.5% in the beauty industry, 19.5% in the health sector and 12.8% in the service industry. Unfortunately, most of the respondents do not have long-term savings—30% would only be able to survive for two to three months on their savings, and 64% are not able to access loans.

Reflecting back on more than a year of the pandemic, Ms Chaniago said that the situation didn’t rapidly improve and instead got more challenging as time went on. “I decided to start a small business, selling beef rendang and other Indonesian street food. Opening a business during the pandemic wasn’t ideal, and not long after the opening I had to close down my store. Now I continue my small business on the streets.”

Ms Chaniago is determined to survive these trying times and she recognizes that many of her fellow transgender women face bigger hurdles. Many transgender people in Indonesia do not have identity cards, leaving them unable to access social support from the government. The CRM survey found that 51% of respondents did not receive social support from the government and those that tried to receive it faced many challenges in accessing it.  

On top of the socioeconomic struggles they face, discrimination and violence towards the LGBTI community continues—transgender women in Jakarta have even been pranked with aid packages filled with garbage. The CRM survey also found that violence against LGBTI people increased.

Keeping in touch virtually among the community has been essential. Ms Chaniago said, “I want to tell my fellow LGBTI peers that they are not alone. As a community, we must continue to help each other out and fight for what is right.” Unfortunately, the CRM survey found that the community cannot always turn to peers for support, as many don’t have devices or enough Internet data to contact their friends.

Despite the huge hardships, there is a strong sense of optimism and hope for a better life after the pandemic. To get there, however, the LGBTI community needs support, including form the government and the public.

“Everyone has been affected by COVID-19. In Indonesia, many vulnerable groups have struggled to survive not only the pandemic but the devastating impact of loss of livelihoods and income. UNAIDS works with partners to strengthen the protection of vulnerable groups from stigma and discrimination in order to increase equitable access to support and services,” said Krittayawan Boonto, the UNAIDS Country Director for Indonesia.

The CRM Consortium consists of UNAIDS Indonesia and four national civil society organizations—Arus Pelangi, the Community Legal Aid Institute, Sanggar Swara and GWL-Ina. In addition to the survey, the CRM Consortium has mobilized resources for LGBTI people affected by the pandemic through the distribution of food packages, sanitation packages and rent allowances.

The results of the survey are highlighted in a video here.

Since school doors closed last March due to COVID-19, the majority of Jamaican students are still receiving tuition exclusively online. Social media and messaging services are more relevant than ever as a channel to share knowledge and resources with young people, as well as to receive their feedback.

The United Nations Children’s Fund (UNICEF) U-Report is an innovative message-based tool designed to engage with young people, provide them with information and give them an opportunity to weigh in on issues of national importance. Jamaica became the first Caribbean country to launch U-Report, joining a global movement of more than 5 million U-Reporters. UNAIDS Jamaica recently collaborated with UNICEF to find out what young people know, or don’t, about HIV. The 10-question quiz also provided correct information to the participants.

Almost 2000 young people responded to the survey, with just 214 achieving a perfect score. The quiz pointed to some worrying gaps in knowledge relating to both HIV basics and access to information on HIV prevention. One in 10 respondents mistakenly thought HIV could be transmitted by mosquitoes, for example. Almost one in three were not aware of the local solution for delivering school-based sex education, the Health and Family Life curriculum.

The results of the survey corroborate Jamaica’s most recent Knowledge, Attitude and Behaviour (KAB) survey results and demonstrate that there are still glaring HIV knowledge gaps among young people. The survey revealed that only 33% of young people between the ages of 15 and 24 years correctly identified the ways in which HIV can be transmitted. This was a 6% decline in knowledge levels as compared to the 2012 KAB survey. The 2017 study also found that 40% of respondents with multiple partners did not use a condom during their last sexual encounter.

“The results of the HIV U-Report quiz have reinforced the need for efforts to be made to address the decline in knowledge on information on HIV among young people in Jamaica,” said the UNAIDS Country Director for Jamaica, Manoela Manova. “Particularly in the context of COVID-19, it is critical that we innovate to ensure that this messaging and engagement takes place on digital platforms and with a view to ensuring that no child or young person is left behind.”

The U-Report social messaging tool has proved to be a quick and useful way to gather information that can be used to inform programmes and plans focusing on young people in Jamaica. UNICEF Jamaica has supported innovations to ensure that children and young people have access to education and support during COVID-19, including tele-mental health services, virtual instruction training for teachers and strategies to close the digital divide.

During COVID-19, virtual dialogues and behaviour change communication have been scaled up. A UNICEF-supported initiative aims to address the gaps in HIV and sexual and reproductive health knowledge for young people in Jamaica. The National Family Planning Board’s Adolescent Sexual and Reproductive Health Campaign focuses on teen health, including targeting sexually active teenagers with messages on condom use and dispelling myths about HIV transmission. The campaign disseminates sexual and reproductive health/HIV information through social media and uses animated characters to reach adolescents. The campaign also speaks about the benefits of abstinence and birth control. 

Ralph Ivan Samson, the President of Y-PEER Pilipinas, and his team of young volunteers have been working tirelessly throughout the COVID-19 pandemic to supply antiretroviral therapy to young people struggling to get refills. “How could I sleep at night knowing that community members were depressed and anxious about their refills. I had young people texting me they were down to their last couple of pills,” said Mr Samson, remembering the initial COVID-19 outbreak in the Philippines in March 2020. It was at this moment that he knew he had to do something.

Throughout the region, civil society organizations like Y-PEER Pilipinas began looking into ways of overcoming the barriers and challenges that prevent young people from accessing HIV services due to COVID-19 restrictions. For example, Y-PEER gained support from local governments with special travel passes to enable the delivery of antiretroviral therapy from the hospital straight to the doorsteps of young people living with HIV.

Y-PEER Pilipinas was one of several beneficiaries of the COVID-19 Emergency Relief Fund, a regional small-grants programme established by Youth LEAD to support initiatives led by young people across Asia and the Pacific during the COVID-19 pandemic. The COVID-19 relief fund supported 12 organizations led by young people in nine countries with various projects, including the delivery of antiretroviral therapy, hygiene products, opioid substitution therapy, emergency supplies and food, cash transfer programmes for businesses run by transgender people and housing for key populations.

Youth LEAD’s efforts to mobilize resources during the early days of the pandemic are a testament to young people rising up to the occasion and working in coordination with regional partners of the HIV response in Asia and the Pacific. In their efforts to raise funds, Youth LEAD relied on the findings of a regional assessment on the needs of young key populations and young people living with HIV during the COVID-19 pandemic conducted by the Inter-Agency Task Team on Young Key Populations Asia Pacific (IATT on YKP), a regional coordinating platform comprised of United Nations agencies and young key populations regional networks. The results of this assessment helped to inform the IATT on YKP and its regional and national partners on ways to support organizations led by young key populations during the COVID-19 response. The evidence gathered through the survey was used to inform preparedness response plans and local strategies on providing timely information on COVID-19 prevention, supporting the delivery of antiretroviral therapy and tackling stigma and discrimination. 

With the support received from Youth LEAD, Mr Samson and his team of volunteers provided condoms and lubricant and emergency supplies to young key populations and young people living with HIV across several provinces in the Philippines. The programme is known online as #GetCondomsPH, and a similar initiative led by young people from the COVID-19 Emergency Relief Fund supported the delivery of antiretroviral therapy to people’s doorsteps in Goa, India.

Aadi Baig, Programme Manager, and his team at Wasaib Sanwaro, an organization that works with gay men and other men who have sex with men and male sex workers in Pakistan, have also benefited from the COVID-19 Emergency Relief Fund. Mr Baig revealed a troubling picture of how the COVID-19 pandemic has made things worse for key populations. “The pandemic has created a greater divide among people, socially and economically, and has uncovered the lack of social security and protection programmes for key populations.”

With the support received, Wasaib Sanwaro donated food and supplies to key populations and provided basic HIV and COVID-19 training. Although there are limited funding schemes for organizations of young people across the region to access grants, regional networks of young people, such as Youth LEAD, Y-PEER and YVC, and the coordinated response by the IATT on YKP, which in 2020 was co-chaired by the UNAIDS Regional Support Team for Asia and the Pacific, the APCASO nongovernmental organization and the United Nations Development Programme, have stepped in to provide support.

As part of the work of the IATT on YKPs, a website that pools together COVID-19 resources for young key populations and showcases how young people have stepped up to respond to the COVID-19 pandemic was developed. The website also focuses on resources on the mental health of young key populations and the well-being of adolescents and young people at higher risk of HIV.

The most crucial aspect of all these activities was visibility, the visibility of young people, to ensure that young key populations and young people living with HIV had a voice during the pandemic. To keep the issues and needs of young key populations on the top of the advocacy agenda in the region, the IATT on YKP, with support from the UNAIDS Regional Support Team for Asia and the Pacific and Youth LEAD, held the first Spill the T with YKPs webinar—an online panel with young people from across the region that offered a platform for young people to talk about their initiatives and their roles in the COVID-19 response. The series continued through the collaboration of the IATT on YKP with partners and explored issues of young people’s leadership, mental health and sexual and reproductive health and rights.