HB 107

"🔴 Texas just passed HB 107 — and it gives the state total control over sickle cell data, while blocking families and courts from accessing it

On the surface, HB 107 looks like a public health win. It creates a statewide registry to track sickle cell disease and support better treatment across Texas. That sounds like progress—especially for Black Texans, who are disproportionately impacted by this disease.

But here’s what the bill actually does:

📁 It hands full control of the registry to the Department of State Health Services—and then walls off the data from public view.

You can’t file a public records request.
You can’t subpoena the data in court.
You can’t even testify about it in a legal case without advance consent.

There’s no guaranteed access for patients. No oversight board. No legislative review of how the data is shared, used, or monetized.

And that’s not all:

💸 The registry is permanent—but funding isn’t.
If the Legislature doesn’t specifically budget for it, the state isn’t required to run it. That means hospitals could still be required to report patient data, but the state might not even maintain the system.

So who benefits?

✅ State agencies and research partners that gain access to protected data
✅ Large hospital systems like Texas Children’s Hospital, who supported the bill
✅ Health plans and biotech firms that can use registry trends to shape policy or pitch new drugs—without being audited

And who loses?

❌ Patients whose data is stored but locked away—even in legal emergencies
❌ Families who want answers, justice, or recourse but are told “the registry isn’t public”
❌ Everyday Texans who believe health systems should serve people, not protect institutions

This registry isn’t just about tracking a disease. It’s about who controls the narrative around it.

📊 The bill sets up a new model: state-run health data systems that can operate without transparency, public input, or court access.
📉 It lowers the bar for future disease registries to do the same—possibly for mental health, disability, reproductive care, or addiction.
🛑 And it normalizes a legal framework where patients lose rights just by being included.

I’m not a lawyer, but here’s why this feels like a serious red flag:

The data can’t be subpoenaed—not even for malpractice or wrongful death cases.

Contracts related to the registry don’t require competitive bids or external audit.

Public funding can be routed into a health surveillance system with no citizen review.

📬 Bottom line: HB 107 may have started with good intentions, but what passed was a power shift—not a public health safeguard.

If you care about medical privacy, legal rights, or public oversight—this bill matters. Because what’s happening behind the scenes won’t stay limited to sickle cell.

🔴 #HB107 #TexasHealthPolicy #WatchTheDetails #DataWithoutRights"