Leaders of today
International Youth Day

Youth leadership is critical to the HIV response with around 5500 young women aged 15–24 years acquiring HIV every week, according to UNAIDS data. This International Youth Day, we spoke with young leaders from across the world. These leaders of today shared their experiences, and gave their top tips on how to make young voices heard in the response and advice for affecting systemic change.

JJustin Francis BionatPhilippines

Justin Francis Bionat

Philippines

I use “they/them” pronouns and I am a queer feminist activist working at the intersections of LGBTQI+ rights, sexual and reproductive health and rights and youth empowerment. I am the Executive Director of Youth Voices Count, a regional network for young LGBTQI+ people in Asia-Pacific working on human rights and sexual health. I sit on the Global Fund Youth Council, a board member of the International Day Against Homophobia, Biphobia, and Transphobia Committee, and a Youth Action Team member and Diversity and Inclusion Advisory Group member of CIVICUS. In 2018, the APCOM Foundation awarded me the Young Achiever HERO Award. I hold an MA in human rights and democratization from the Institute of Human Rights and Peace Studies of Mahidol University, Thailand.

Young people are in leadership and decision-making roles in the HIV response, but we should ask if their presence is meaningful and their narratives are considered. Often, our institutions, structures, cultures of inclusion and programming are designed to be tokenistic: to include but not meaningfully engage. There should be a shift in the dynamics and strategies of engaging with young people – in the HIV response and human rights work.

Many young people in our movement identify as LGBTIQ, people living with HIV, sex workers, Indigenous people or refugees. They all have stories. Ask for their input, and turn it into recommendations, actions and commitments.

We must not silence other young people, but rather uplift, support and nurture their experiences and create systematic changes. If young people’s voices are not heard, then we should start changing policies, which is easy if there is willingness and empathy. The best way for my voice to be heard is not by being the loudest, but by amplifying the voices that should be shouting in unison, especially when the common goal is human rights for everyone.

My top three tips are:

  1. Change hearts and minds. We must continue our campaigns and activism. Create a culture of support for young people living with HIV; battle bigotry, homophobia and transphobia from within educational institutions; create harm reduction support for people who use drugs, instead of criminalizing them. It starts with identifying key allies and then challenging cultures and negative perceptions.
  2. Know your privilege. Self-assess whether some spaces and opportunities are beneficial for our movement. Decolonize the culture of youth empowerment and mobilization because there are many rich experiences in grassroots movements at the core of HIV activism. See young people as partners and co-creators. We often discuss HIV in a biomedical tone; localize and develop communication strategies to make HIV knowledge accessible to all.
  3. Self-care is important. Self-care includes examining and assessing yourself in order to better serve your communities and the world. Learn to say no when you need to rest and recuperate. I’m advocating for self-care to be an essential part of programming for activists and staff working in organizations and health facilities on the front line. How will our voices be heard if we cannot take time off to care for ourselves?
Rewan YoussifEgypt

Rewan Youssif

Egypt

I am a medical doctor, with a Master’s in public health for development from the London School of Hygiene and Tropical Medicine. I am a consultant with CARE International, raising awareness among young refugees in Egypt on sexual and gender-based violence. Growing up in North Africa, I learned that basic youth rights in some areas are not seen as fundamental but as a privilege. Through my work, I have made sure that young people are empowered, represented and included in decision-making processes on national, regional and international platforms so that basic youth rights become fundamental.

I began my journey as a youth advocate for sexual and reproductive health and rights (SRHR) with leadership positions in youth-led organizations, such as the International Federation of Medical Students’ Associations and the Global Youth Coalition on HIV/AIDS. I continue as an advocate for SRHR as a Regional Coordinator for the Middle East and North Africa (MENA) Regional Youth Network on HIV and SRHR (SIBA).

My involvement in community service and volunteerism has inspired me to work together with communities. Working with young people and women living with HIV in India in 2013 sparked my larger purpose to reach out to populations most affected by HIV and other sexual and reproductive health issues, such as female genital mutilation (FGM), child marriage and maternal mortality. I continue to fight against FGM as a board trustee of the Orchid Project in the UK.

The primary issue with the lack of young people in leadership roles is the lens through which institutions view them. Young people’s voices are often diminished because meaningful youth participation is mistaken for performative activism. The tools a young person is given are insufficient to deal with the challenges of responding to HIV. Young people are seen as a homogeneous collective; minimal representation of youth leadership is thought to represent different key populations and their needs. We must provide opportunities for young people that translate their voices and concerns into recognizable action, and promote youth leadership by supporting them as part of the institutions.

The ineffective HIV surveillance system in much of MENA creates a delay in response within affected communities. This can be attributed to the consensus surrounding the lack of data from this region, but the absence of evidence doesn’t equal evidence of absence.

Despite the challenges, I have been able to help empower young people. Nationally, for example, I was a founding member of the National Youth Advocacy Taskforce for Development (2015), aiding in the formulation of the Youth Component and its adoption in the National Population and Reproductive Health Strategies, along with the National Population Council in Egypt. Regionally, with a brilliant colleague from Lebanon, I co-founded SIBA, the first HIV and SRHR network for young people in MENA, in 2019. We have had the strong support of allies, such as UNAIDS, UNDP and WHO, which has been monumental in clearing the obstacles riddling youth advocacy.

My top three tips are:

  1. Learn from the experiences of young people from other countries and regions; don’t reinvent the wheel. When it comes to youth advocacy, there is no “one size fits all”. Every journey holds valuable lessons that can guide you.
  2. Partner with those who walk the talk, and be mindful of those who only talk the talk.
  3. Be persistent, believe in yourself and don’t be afraid to claim what’s yours.
Yana PanfilovaUkraine

Yana Panfilova

Ukraine

I was born with HIV and I am a founder of Teenergizer. In my childhood, I thought that I would die; people in Ukraine equated HIV with AIDS. My mother, who organized support groups for children living with HIV, made me realize that HIV doesn’t kill. Ignorance does.

My friend’s grandmother told my classmates and teachers that I was a drug dealer after she saw me taking my ARVs. During a discussion of HIV in my biology class, my teacher told everyone, “I hope you’ll never meet an HIV-positive person.” Long story short, I experienced inequalities and discrimination. There was also self-stigmatization. I was taking photos with my friends living with HIV and thought that we should hide our faces.

I dreamed about a movement where teenagers living with HIV could work together without hiding. Every New Year, I would make a wish, and one year, I wished for a meeting with all young people living with HIV in Ukraine. The next week, we organized a meeting with 10 children: it was the first meeting of the future Teenergizer team. For me, it was a step towards accepting my status and becoming an activist.

I told these friends and strangers that we could change things together. I spoke about Teenergizer whenever possible. And you know what? Things started to change in our region of Eastern Europe and Central Asia. Things were difficult at the beginning. We did not find support from stakeholders. People in government nodded and promised to help, but they still ignored us. But now we had a strong community ready to act.

Teenergizer has three focus areas: HIV, self-development and mental health of teenagers. The message is that teenagers living with HIV are just teenagers. We are not monsters. By placing ourselves into groups, we discriminate against ourselves. We forget that HIV doesn’t make you another person. Half of our members are HIV positive and half are not.

At 13, I joined adult activists living with HIV from Ukraine visiting Moldova. This gave me strength to disclose my HIV status publicly. Unfortunately, the news reached my hometown. My activism was crushed. It took three years to regain my strength to face the public. Since then, I have spoken about HIV and human rights to media, politicians and adolescents. I have opened my horizons beyond HIV to include solidarity with those living with other chronic health conditions and also facing social exclusion.

Believe in what you are doing: unite the voices of young people affected by HIV, and create a strong community. Clearly understand what you want to change in policy or governments. Advocate these strong messages to decision makers. Don’t give up; learn from your mistakes and move on.

My top three tips are:

  1. Demand the information and opportunities we need to be empowered as equal partners in our care. Most medical staff don’t engage with us. We are not experts on medicine – but we are experts on our own lives.
  2. Push for removal of age-related barriers against accessing information, treatment, care and support, as well as barriers that violate our privacy, confidentiality and right to health. We have to wait until we are 18 to access services without parents.
  3. Build on our connectedness. We are more connected than any generation. We can help design new digital technologies and biotechnologies for improving health and well-being. We can help collect data to build evidence on what works. As the U-Report Global polls showed, we can mobilize more than a million responses on health from adolescents and young people U-reporters across the globe.
Josephine NabukenyaUganda

Josephine Nabukenya

Uganda

I am 27 years old and was born with HIV. I have been greatly involved in HIV advocacy since I addressed the US Congress as a child in 2005. My work has grown from being a participant in care to advocacy, writing grants, implementing projects with a team of vibrant young people and, most recently, to being the first person under 30 to serve on the IAS Governing Council. The Queen of England recognized me as a Queen’s Young Leader in 2016. I hold a Bachelor’s degree in social sciences and have also been an Advocacy-for-Cure grantee.

Leadership positions require certain skills, which some young people do not have. This limits their ability to step up into such positions. A key thing that has helped me is having mentors and role models who have nurtured and supported me. It’s better if mentorship starts early, even before one has gone far in one’s education.

We have frequently heard young people asking for space at decision-making tables. Some have created that space. But is that space favourable? Well, sometimes, the space has not favoured them to be part of the decision-making process. Young people attend, but are not heard. We need fair representation by young people who are actively part of the decision-making process.

I grabbed every opportunity, small or big, which created room for me to speak up and represent my peers. Only one step leads to another. You have to be open minded.

My top three tips are:

  1. Concentrate on what you have. We have stories and experiences that the scientists do not have. You know best which experiences you wish someone else would have and not have. Never let someone else write your story because they will twist it to their advantage. In short, telling your own story should create the change that you want to see.
  2. Don’t accept “no” . I dreamed of holding camps for adolescents with adherence challenges. Since 2014, all I would hear was, there is no money. I never took it as a “no” it pitched me to start my journey of grant writing. I won my first grant, US$2,500, for my first three-day residential camp in 2017. This was followed by a GBP5,000 to hold four camps over five days. If I had accepted “no”, my dream would not have come true. A “no” from the other party should never be a “no” on your side.
  3. Find mentors and let them know that you are looking up to them. Find mentors who can support you to become a better person in your career. We all need people to look up to, and it is better if they know that you are looking up to them. Then they will support you throughout your journey.