First hand: Why community leadership must shape the HIV response

When I look back on the past year, one word comes to mind: surprise.

2025 tested many of us working in adolescent and young people’s health. Programs came to a sudden standstill after funding disruptions. This left communities uncertain and afraid. Clinics closed, distinguished service delivery stopped. Many young people feared accessing treatment because of stigma and discrimination. In those moments, the fragility of our systems became impossible to ignore. But difficult seasons are also seasons of learning.

One of the greatest lessons I am carrying forward is the urgency of sustainability. Whenever we begin implementing donor-funded programs, we must also thinking about transition. We need to think about what happens when that support is no longer there. Communities cannot afford gaps in care.

Another lesson for me is the importance of consistent and accessible health information. Young people need reliable information wherever they are. Be it online, offline, in facilities. Even if it is through toll-free services which can reach those without smartphones. Information should never be a privilege.

Most importantly, I learned that leadership must start at the individual level. Young people must be equipped not only with knowledge but with the confidence to become their own advocates. They need to be empowered to access care and ask questions. Young people should be able to make informed decisions without waiting for someone else to guide them.

Consistency has also shaped my journey. For me, consistency means loving the work enough to show up every day. Showing up with or without incentives. This is because I believe in building a generation of healthy, informed, and empowered young people. It means staying open to learning, unlearning, and relearning. It means accepting correction and striving to grow into the kind of leader I once looked up to.

Starting the year grounded, therefore, begins with community. Grounding is about listening. Not just listening but truly understanding the people we serve. It is strengthening relationships between youth and adults so that we can meet on common ground. Grounding is about ensuring we have honest conversations about HIV, sexual and reproductive health and the realities young people face today. Because when communities are connected, prevention becomes possible.

The lesson that changed me

There is one experience that continues to guide my decisions. I once met a young man entering university who had completely lost hope. He was born with HIV and living with an advanced disease. At the time, he was critically ill and emotionally withdrawn. Through psychosocial support, nutrition linkages, and consistent encouragement, he slowly began accepting his reality and adhering to treatment.

Today, he is pursuing his master’s degree abroad. That journey reminded me that this work is never individual, it is collective. Supporting one young person required collaboration with clinicians, nutritionists, and mental health providers. HIV response demands a multisectoral approach. We truly need each other.

Communities reinforce this truth every day. When diverse groups unite around one shared goal, change becomes possible. I witnessed this when young people and community representatives came together to present a memorandum to the Ministry of Health advocating for inclusive health insurance coverage. Collective voices move systems.

When loss becomes a teacher

Not all lessons arrive gently. Losing young people, especially those who struggle with treatment adherence, has been one of the hardest parts of this work. Those moments forced me to rethink my approach.

Today, we focus more intentionally on setting goals with young people. We also pair them with peer supporters so that no one walks the journey alone.

From that pain came progress. More young people adhering to treatment and increased uptake of SRHR services. There are more open conversations about protection and prevention. I have discovered that sometimes the hardest experiences build the strongest systems.

Why stories matter

Young people and storytellers are powerful agents of change. But how we tell stories matters.

We must move away from narratives rooted in fear. Instead, we should share lived experiences - honestly and responsibly - while offering solutions. When a young mother tells her story, it should not be to frighten others. It should be to educate them about consent, contraception, and choice. Owning our stories allows others to see themselves, learn, and make different choices.

Yet some narratives still need urgent transformation. Stigma and discrimination remain deeply entrenched. Misconceptions about HIV persist, and many young people still fear disclosure because they worry about rejection. Stigma extends beyond HIV to include early pregnancy and gender-based violence.

These are the stories we must rewrite. At the same time, prevention narratives are gaining ground, and they must be protected.

Looking ahead: Self-reliance and integration

As we step into 2026, my hope is that we strengthen domestic financing for health. With donors transitioning, countries must move toward self-reliance. This can be done by allocating more resources to HIV response.

Better integration of services is also critical. When care is offered at a single service point rather than isolated clinics, we reduce stigma and improve access. But this must be implemented thoughtfully to avoid unintended barriers.

For communities, the future lies in movement-building. We need to come together to advocate for inclusive health insurance systems. Systems that work for everyone, regardless of their condition.

What communities need most

If I could name three priorities, they would be clear:

• More human resources in public health facilities
• Strong, government-supported community groups
• Financial investment in awareness and capacity building

Community health promoters are already trusted messengers. Integrating HIV and SRHR information into community health strategies will ensure knowledge reaches households consistently. Because awareness saves lives.

The future depends on…

If I were to finish this sentence - “As we move forward, the future of the HIV response depends on…” - my answer would be simple:

Stronger domestic funding, effective service integration, and inclusive health insurance systems.

And above all, a national commitment to sustainability. We are on a journey toward self-reliance. Now is the time to invest in systems that will protect the health and dignity of young people for generations to come. The future of the HIV response is not only technical, but also deeply human. It lives in our communities, our partnerships, and our willingness to lead together.