Beyond awareness: How youth leadership is reshaping the HIV response

Every year on April 10, we mark National Youth HIV & AIDS Awareness Day. We post the statistics and share the graphics. We remind ourselves that young people aged 13 to 34 account for more than half of all new HIV diagnoses in the United States, Black and Latinx youth carry a wildly disproportionate share of that burden, and young Queer men of color remain among the most affected populations in the country.

And then, we move on.

Awareness matters, but awareness without power is just grief with better graphics. After four decades of HIV advocacy, we owe young people more than recognition. We owe them a seat at the table where decisions are made.

Harold Phillips has spent his entire career in the HIV movement, watching young people step up with courage and clarity, only to be pushed to the sidelines once the spotlight fades. Their stories help move donors. Their faces appear in campaign materials. Their words are quoted in congressional briefings. Yet when it comes to the rooms where strategy is shaped, funding is decided, and priorities are set, those same young people are too often shut out.

And Harold knows those rooms well. He’s been in them. As Director of the White House Office of National AIDS Policy, he helped lead the federal Ending the HIV Epidemic initiative. He sat at the tables where the national HIV strategy was crafted, where budgets were argued over, and where decisions with real consequences were made.

The data are not new. We’ve known for years that youth, particularly young Black and Latinx men who have sex with men, young transgender women, and young people experiencing homelessness, are at the epicenter of ongoing transmission in this country. We know that stigma, lack of health insurance coverage, mistrust of the health system, and economic instability create nearly insurmountable barriers to testing and treatment. We also know that PrEP uptake among young people of color remains stubbornly low, not because they don’t want protection, but because the system has not made protection accessible, affordable, or culturally competent.

Princess Jauan Durbin began working in HIV prevention at 17 years old. Nearly a decade later, they serve as Vice President of Community Health and Partnerships at the Southern Legal Center for Youth, leading youth-centered HIV prevention programming and engagement strategies across the South. They have experienced firsthand what so many young advocates describe: being invited into rooms for representation, only to be excluded from the decisions that actually shape outcomes and directly affect them as a young person navigating their own sexual health. Through their work bridging community programs, national coalitions, and global advocacy spaces, one thing has become clear: young people are not disengaged from HIV prevention strategies. They are disengaged from the systems that fail to meet them where they are.

Across the country, young advocates are doing the work without waiting for permission. They are organizing in their communities, building peer networks that reach people no clinic ever could, and demanding that HIV programs address the full complexity of their lives: housing instability, mental health, immigration status, and the ongoing weight of stigma in this country. They are not waiting for the system to catch up. They are building something better.

Our job, and the job of other organizations like NMAC and the Southern Legal Center for Youth, federal agencies, funders, and congressional champions, is to put resources and political power behind what young people are already doing. That means fully funding youth-focused HIV prevention programs that center communities of color. It means defending the Ryan White HIV/AIDS Program, 340B Drug Pricing Program, and Medicaid, which together make up the backbone of HIV care for low-income, uninsured, or underinsured youth. It means supporting community health centers and local organizations that know their communities best. And it means making sure the young advocates leading this work are compensated and supported in proportion to their contributions, not treated as unpaid advisors in systems that rely on their insight to function.

None of this happens without political will. It requires sustained investment and leaders at every level of government who are willing to treat the health of young people of color as a genuine priority, not a line item to revisit when the budget gets tight.

We have made extraordinary progress in the science of HIV. We have the tools to prevent transmission, achieve viral suppression, and ensure people living with HIV live long, healthy lives. However, our commitment to making these tools available to everyone who needs them, especially young people who face the greatest structural barriers to care, has not kept pace.

The evidence is clear on what works. When prevention strategies are delivered through a culturally competent, peer-led approach, we see increased testing, stronger engagement with PrEP, and more open conversations around sexual health. The issue is not a lack of interest among young people. It is a lack of investment in strategies that reflect their lived experiences. Without directly addressing this, we will continue to recycle the same negative health outcomes for the same communities.

What we need now is not another awareness campaign or social media post, but a redistribution of power. That means resourcing youth-led organizations and collectives, embedding young people in decision-making roles, and designing prevention strategies ideated and implemented by young people that prioritize access, dignity, and autonomy.

Awareness is necessary, but now we need accountability and organized, sustained political engagement that centers the voices of young people of color and holds our institutions accountable for delivering on our commitments.

Young people in the HIV response have been proving themselves for decades. They don’t need to prove themselves anymore. They need resources, platforms, and power. It’s time we stop treating youth as the future of the HIV movement and start treating them as what they already are: the movement’s most essential leaders.

Now, we need to follow their lead.

Join us in Anaheim, CA, for USCHA 2026: United and Unbreakable, The HIV Movement at 45

Harold J. Phillips, MRP, is CEO of the National Minority AIDS Council (NMAC). Princess Jauan Durbin is Vice President of Community Health & Partnerships at the Southern Legal Center for Youth, where they lead youth-centered HIV prevention programming.

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