Florida must not turn back the clock on HIV care

Thirty-one years ago today, my brother John died of AIDS. At that time, the diagnosis was a death sentence. Families watched loved ones fade away while medicine struggled to keep up with a virus the world barely understood.

Since then, science and compassion have transformed a fatal disease into a manageable condition. Today, with consistent care, people living with HIV lead long, healthy lives. Many reach undetectable viral levels, meaning the virus cannot be transmitted to others. This progress is one of the greatest medical achievements of our lifetime.

That is why the recent changes to Florida’s AIDS Drug Assistance Program (ADAP) are so devastating.

Approximately 16,000 Floridians — nearly half of those enrolled in ADAP — may lose access to the medications that keep them alive. These are not optional services; these are the treatments that prevent HIV from progressing into AIDS and allow people to work and care for their families.

The rollout of this change has been catastrophic. Patients were given roughly two months’ notice to navigate a frightening transition. For many, that is simply not enough time to secure new insurance or identify affordable options. When life depends on uninterrupted treatment, even a short lapse in access can be fatal.

Information access has been marginal at best. Instead of a clear, urgent banner on the Department of Health website, finding the ADAP page requires navigating roughly eight separate clicks. Even then, the links lead to confusing pages that are difficult to navigate for someone in a moment of crisis.

While local leaders like Clint Sperber in my hometown have made genuine efforts to reach out, many other county websites lack sufficient information. This leaves those who work all day and depend on the internet as their primary resource in the dark.

Furthermore, thousands may not even realize they are affected. Self-insured individuals who haven’t received warning letters could suddenly find themselves without coverage if they change jobs or purchase a new plan without understanding the new requirements.

We should provide clear guidance to help patients select insurance plans approved under the ADAP framework. Instead, they are left to navigate a complex system on their own.

I understand the program faces financial challenges, but any funding shortfall must be addressed responsibly. When the health of thousands is at stake, the response must match the urgency of the crisis. This is a public health emergency that demands aggressive outreach and meaningful assistance.

As I remember my brother today, I am struck by how far we have come. But that progress only matters if people can access treatment. If 16,000 Floridians lose the medications that keep HIV under control, we risk undoing decades of hard-won progress. We risk allowing a treatable disease to become deadly once again.

We can, and must, do better.

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Dana Trabulsy represents District 84 in the Florida House.