Expanding HIV diagnostics is the key to ending the epidemic

By Matt Rose

The story of HIV in this country has been written in numbers.

Beneath those numbers are people, communities, and systems that have the power to support us.

But they don’t always show up when we need them most.

We saw HIV testing rates drop sharply during the COVID-19 pandemic. It still hasn’t fully rebounded in all too many places. Clinics have cut hours, and community programs are fighting to stay open.

In contrast, new HIV diagnoses remain stubbornly high in Black, Latine, Southern, and queer communities—especially among Black and Brown gay and bi men, trans women, and people who inject drugs.

When testing goes down, and inequities stay up, we already know who carries the burden.

We have more prevention and treatment options than ever, but people’s sense of safety and access haven’t caught up. Acknowledging these barriers can deepen empathy and drive commitment to change.

In the past 12 months alone, the HRC Foundation’s BRIDGE Survey shows:

6.0% of respondents say they currently need HIV testing but cannot get it.

8.9% of respondents say it has become harder to access HIV testing.

11.7% of respondents delayed or avoided HIV testing because of fear of discrimination, stigma, judgment, privacy concerns, or being outed.

That’s why HIV testing isn’t just a clinical service. It’s the front door to concrete change.

For some, it’s routine—every few months, you test and keep it moving. For others, it feels like a line between “before” and “after” a diagnosis. But in every case, testing accomplishes one powerful thing: It turns fear and guesswork into facts and gives you the confidence to take control of your life.

Yet in too many communities, that front door is narrowing.

The data tells us that roughly 1 in 9 people are putting off a test because they’re afraid of how they’ll be treated, almost 1 in 11 feel testing has gotten harder, and 1 in 17 have an unmet need for something as basic as an HIV test. That is not just about individual choices; it’s about the environment we’ve built around those choices.

In the last decade, we’ve created options that didn’t exist a generation ago: PrEP to prevent HIV; treatment that ensures that you cannot pass HIV to your sexual partners (U=U); HIV self-tests at home; telehealth that you can access on your phone. But none of that matters if people never get through the gateway—if they never take that first test.

A test is not a verdict. It’s a launchpad. And people are weighing that launchpad against very real stigma and privacy concerns.

That isn’t an individual failing. That’s a system failing.

You cannot end the HIV epidemic while rationing the very tool that enables prevention and care: Basic diagnostics.

If we’re serious about ending HIV, we have to be intentional about making testing:

• Frequent. Part of routine care, not a rare event.

• Free and low-barrier. No out-of-pocket costs, no ID, no insurance hoops.

• Accessible everywhere. Clinics, pharmacies, shelters, harm reduction sites, community centers, bars, Pride events, online—wherever people are.

• Self-directed. Free or low-cost home test kits, easy to get and use.

• Inclusive. Community organizations can foster affirming, anti-racist, queer- and trans-competent, trauma-informed spaces by training staff, creating welcoming environments, and actively combating stigma. This empowers advocates to build trust and increase testing uptake.

Policy has to match the reality of people’s lives, not the comfort of the status quo. That means stable funding for HIV testing and outreach, protecting and expanding Medicaid, supporting community-led programs that know their people best, and investing in harm reduction and sexual health services—not cutting them when budgets get tight.

It means that when someone says, “I want to know and I deserve to know,” there is a place, a person, and a program ready to meet them with care, not judgment.

Because at its core, HIV testing is about power—power to name what is happening in your body, to make informed decisions about your sex life, relationships, drug use, and future, to demand the health care you need, deserve, and are owed. When we bury testing under stigma, politics, and bureaucracy, we’re denying that power.

Everything starts with that first test. Not as an ending, but as an opening: to options, to treatment, to prevention, to dignity. Our policies should be grounded in a simple truth: Knowledge opens doors, builds pathways, and shifts power into the hands of the people whose lives are on the line.

The HRC Foundation’s BRIDGE Survey tells us what people say would help:

43.3% want reduced out-of-pocket costs for HIV testing, PrEP, and treatment.

37.4% want more access to LGBTQ+-affirming providers.

36.3% call for more funding for HIV clinics and community health centers.

34.3% want expanded coverage through Medicaid or other insurance.

People are not confused about what they need. They are telling us they want affordable, affirming, and close-to-home testing and prevention.

If we want big news in HIV—declining infections, shrinking disparities, a real path to ending the epidemic—we start by making sure everyone has the tools, the access, and the respect to take that test and have that knowledge met with compassion and care.

Our community’s resilience can—and should—inspire hope and motivate action.