A Referral Is Not a Strategy for Aging With HIV

When good people build systems, it's worth asking a difficult question: Who isn't being seen?

I've been asking that question for years while working at the intersection of HIV and aging. Along the way, I watched HIV organizations do extraordinary work helping people survive—and then helping them live longer. At the same time, I watched aging organizations devote themselves to helping older adults remain healthy, independent, and connected to their communities.

Both systems were doing exactly what they had been designed to do.

The challenge is that neither was designed for the growing number of people aging with HIV.

Today, more than half of people living with HIV in the United States are age 50 or older. That's a remarkable public health success. Advances in treatment have transformed HIV from a fatal diagnosis into a chronic condition for many of us. We should celebrate that achievement.

But longevity has changed the questions we need to ask.

People aging with HIV are no longer navigating HIV alone. They're also navigating retirement, caregiving, housing, transportation, social isolation, chronic disease, cognitive changes, and everything else that comes with growing older. They need organizations that understand both HIV and aging, not one or the other.

Too often, though, they find themselves moving between two systems that don't always speak the same language.

When I raise this issue, I often hear a reassuring response.

"We know who to refer people to."

I appreciate that response because it reflects something important: a willingness to help. Strong referral relationships are essential. No organization can or should try to do everything.

But a referral is not a strategy.

A referral connects someone to expertise somewhere else. It does not build expertise within your own organization. It doesn't prepare staff for the first conversation. It doesn't ensure that intake forms ask the right questions. It doesn't help someone feel recognized, respected, or understood before the referral is ever made.

Those moments matter.

Imagine someone walks into your organization looking for help with transportation, nutrition, or caregiving. They don't come to talk about HIV. They come because they're getting older. The question is whether your organization is prepared to recognize that HIV may still shape how they experience aging and whether they leave feeling that they belong.

Fortunately, organizations don't have to start from scratch. The American Society on Aging's new guide, Making the Aging Network HIV-Inclusive, argues that "HIV-inclusive aging services are not an optional enhancement—they are a necessary evolution of a system committed to equity, dignity, and justice." It then offers practical steps organizations can begin taking today, from integrating HIV into staff education and intake practices to strengthening partnerships with HIV service organizations. The recommendations differ, but the message is consistent: referrals remain essential, yet they are most effective when they are part of a broader commitment to organizational capacity. 

The strategy is building organizations that are prepared before someone ever needs a referral.

The strategy is building organizations that are prepared before someone ever needs a referral.

Building that capacity doesn't require every aging organization to become an HIV organization. Nor does it require every HIV organization to become an expert in aging services.

It requires taking the first step toward building organizational capacity.

That step will look different for every organization. It may mean investing in staff education, reviewing policies and intake practices, or strengthening relationships with community partners before a referral is ever needed. The goal isn't to do everything at once. It's to begin asking whether your organization is prepared to serve the people already walking through your doors.

When they don't, the consequences are often invisible. An older adult may receive the transportation, nutrition, or caregiving referral they came for, yet still leave wondering whether this is a place where they can safely talk about living with HIV. The service was delivered, but an opportunity to build trust was missed. Organizational capacity is about making those moments less likely, not by replacing referrals, but by ensuring every interaction communicates understanding, respect, and belonging.

As someone living with HIV, I've watched our community move from wondering whether we would survive to asking how we will age. That is one of the great successes of the HIV response. It also means our systems must continue to evolve alongside the people they were created to serve. As the American Society on Aging observes, "This is not specialized knowledge for a few—this is foundational knowledge for all."

That evolution won't happen through good intentions alone. It will happen one step at a time—one new partnership, one staff training, one policy review, one conversation that helps someone feel seen and understood.

It begins with a simple but powerful question.

When good people build systems, it's worth asking a difficult question: Who isn't being seen?

If we continue asking that question with curiosity, humility, and a willingness to learn, we won't just strengthen HIV organizations or aging organizations.

We'll build organizations that are better prepared to serve the growing number of people living at the intersection of both.

David “Jax” Kelly, JD, MPH, MBA, is Founder & CEO of Aging and HIV Institute and a 2026 Public Voices Fellow on Public Health of The OpEd Project.