Terry Wilcox

Co-Founder @PatientsRising | Empowering patients to address America's most pressing healthcare challenges. Opinions all mine. | Better half: @wilcoxfiles

[Terry Wilcox @Terrilox]

UnitedHealth, the biggest health insurer in the country, ran an algorithm that flagged patients for “too much” therapy. If they had more than 30 sessions in 8 months or twice a week, they denied coverage to save money.

Regulators in California, New York, and Massachusetts called it illegal under federal mental health parity laws because they don’t do this to physical health claims. They settled, paid fines, and kept right on doing it in Medicaid plans across dozens of states.
Insurance companies deciding your care, not your doctor. That’s the policy failure. Read it.

[ProPublica @propublica]

UnitedHealth is the nation’s largest health insurance conglomerate.

ProPublica obtained what is effectively the company’s internal playbook for limiting and cutting therapy costs.

Here’s what we found.
https://t.co/asm5jwMxkd

[Terry Wilcox @Terrilox]

View the webinar page here: https://t.co/KjQkT3EDxJ
You can submit a question from this page!

[Terry Wilcox @Terrilox]

Today. 2 PM ET.
Patients Rising sits down with @pcmanet leadership for a candid, on-the-record conversation.
Majority of the hour is Q&A.
Direct links in comments.

[Terry Wilcox @Terrilox]

Register for the webinar here;
https://t.co/j5byzEyJyH

[Patients Rising @patientsrising]

Michelle knows what it means to fight for care that should never have been difficult to access in the first place.

After her daughter Leslie was diagnosed with Prader-Willi syndrome nearly 28 years ago, Michelle found herself battling insurance companies for therapies, medications and support services that directly impact quality of life.

Instead of stepping back, she stepped further into advocacy.

Michelle went on to serve as a board member and Board Chair of PWSA/USA, later expanding her work into government-level advocacy because she believes real change happens when lawmakers hear directly from patients and caregivers living these issues every day.

As part of the Patients Rising Patient Senate, Michelle brings a perspective shaped by decades of experience navigating Medicaid, insurance barriers and the long-term realities families face when care systems fail to communicate across state lines. She is passionate about improving Medicaid portability for adults with disabilities, reforming the role of PBMs and ensuring patient voices are part of policy conversations from the beginning, not as an afterthought.

We appreciate your advocacy, Michelle!

[ICAN, International Cancer Advocacy Network @WarOnCancer]

The vast majority of #340B hospitals provide charity care BELOW the national average — yet they're pocketing drug discounts meant for the poor. S.1913 would make this worse, with zero new oversight. .@AlSharpton is right: Albany must say no. https://t.co/ectoX8GG68 @AndreaSCousins
@NYSenDems @NYSA_Majority @NYSenatorRivera
@AmyPaulin

[Terry Wilcox @Terrilox]

Maybe, just maybe we should rethink the 32,000 contract pharmacies and no accountability or transparency in the 340B program?

KU hospital authority alleges CVS stole 340B savings, $62M in damages https://t.co/FGLFyFy9yt via @HutchNews

[Terry Wilcox @Terrilox]

All of this.

[Anthony DiGiorgio, DO, MHA @DrDiGiorgio]

I love that @MorePerfectUS is highlighting the downsides of healthcare consolidation.

This is a bipartisan issue.

Let’s fix it:

Site neutral payments, 340B reform, CON repeal, stark reform, and roll back the physician owned hospital ban.

[Mark Cuban @mcuban]

Unfortunately one of the great lies of US HC.

Ask anyone with a serious illness that has been denied care by an insurance company that subcontracted out the denial process to a company owned by overseas private equity firms.

Or how about this one. The heart transplant got approved. But the rejection meds were not.

You can’t get care if you cant afford it or if your insurance company denies it.

Which is just as bad as your government limiting it for budget reasons.

Same issue. Different budget

Anyone else got stories like these ?

[Terry Wilcox @Terrilox]

@txsportsdoc @DrDiGiorgio @RepJasonSmith So is mine!! My kids make fun of me. Sounds like a tax form I know, I’m great fun at parties!

[Anthony DiGiorgio, DO, MHA @DrDiGiorgio]

I thought I liked @RepJasonSmith before...

And then he mentioned 340B!

[Terry Wilcox @Terrilox]

When I started working in cancer advocacy independent community oncology practices treated 85% of cancer care .
Post ACA? Less than 65%.
The ACA decimated community oncology and the margin on 340B oncology drugs and obviously reimbursement issues are a huge part of that.
It’s the great healthcare heist
and it’s been terrible for care access.

[Patients Rising @patientsrising]

Before you can effectively challenge or change the system, you first have to understand how you’re currently operating inside it.

And the vast majority of patients don’t.

They don’t know what their insurance actually covers.

They don’t know what tools, benefits, or programs are sitting unused in their plan.

They lack a single physician who truly owns the big picture of their care.

In other words, they’re running a high-stakes, multi-million-dollar personal enterprise—completely blind.
That is not how a CEO operates.

If you want to step into the role of CEO of your own healthcare, this is where it begins.

Chief Mission Officer Terry Wilcox shows you how to start with an inventory: https://t.co/hGVSGxXjOj

[Terry Wilcox @Terrilox]

👇👇👇👇 Why? Why is this allowed to happen? If patients are not allowed to switch plans they should not be allowed to change the rules of a plan patients are now stuck in. Either patients need to be allowed to leave without penalty or they have to stop. This is wrong. It always has been.

[Terry Wilcox @Terrilox]

What the hell is “community benefit”? Truth: No one knows and that is a problem.

[Dutch Rojas @DutchRojas]

The IRS test for tax exemption is “community benefit.” Median nonprofit hospital spends 2.3% of revenue on charity care. For-profit competitors spend 3.8%.

[Terry Wilcox @Terrilox]

The chargemaster is fake inflated garbage hospitals use as the starting point. Insurers negotiate “discounts” off it. Cash patients walking in and get stuck with the full list price.

So the real losers are the uninsured paying the joke price no one was ever expected to pay. The “deals” are mostly theater that protect the system, not patients.

Given the quarterly earnings of the top insurers (looking at you United Healthcare) the only ones benefitting from this mafia like arrangement are insurance companies, large hospital systems and perhaps AARP.

The rest of us are getting screwed.

[Terry Wilcox @Terrilox]

Please. Take Action Now. 👇👇👇👇

[Patients Rising @patientsrising]

We need patients in this. Plain and simple.

Patients Rising has put together a sign-on letter to HRSA about the 340B program, and it comes down to something that shouldn’t be this hard to answer.

If your prescription is part of a program generating billions in discounted drug revenue, you should be able to see where that value goes and how it actually reaches you.

Right now, you can’t.

That’s the gap this letter is calling out. It pushes for transparency patients can actually understand, real proof that patients benefit, and accountability for how the program is being run behind the scenes.

If you’ve ever dealt with the healthcare costs and thought, “something about this doesn’t add up,” this is exactly where that frustration belongs.

✔️ Sign the letter
✔️ Tag someone in this post to sign on.

It’s being submitted to HRSA THIS AFTERNOON as part of the official record, and it should reflect the people it’s supposed to serve.

Sign the letter here: https://t.co/Vu92eDwLe3

[Dutch Rojas @DutchRojas]

Your local “nonprofit” hospital has a hedge fund, a private jet fleet, a bond rating, and a collections department that sues cancer patients. But sure, tax them like a soup kitchen.

[Heath Veuleman @HeathVeuleman]

One of the reasons is the perverse and recursive incentives of hospitals, health systems, and insurance companies.

The truth is that insurance companies rely upon hospitals and health systems increasing costs year over year. Otherwise, due to their regulated MLR, their margins would stay stagnant.

Therefore, the only way for an insurance company to make more money is for hospitals and health systems to continually increase costs.

The main driver of cost is hospitals and health systems. In fact, when you look at NHE (with no additional attribution) hospitals and health systems are - far and away - the largest recipient of the healthcare dollar.

[Terry Wilcox @Terrilox]

@realdocspeaks @mass_marion I do want to come on the podcast! I will reach out -- just been a crazy week!

[Terry Wilcox @Terrilox]

This all isn’t just theoretical. We’re seeing this show up in real data. Recent polling by @FundThePatient found that 84% of voters react favorably to the idea of “funding patients, not the system.”

That lines up with what people are feeling:
75% say the system isn’t meeting their needs
78% believe they should control their own care
and more than half say their current insurance doesn’t actually give them that freedom

That’s not a niche opinion, that’s a signal. And it's signaling from both parties and independents. The people are not mad at just Big Insurance/PBM/Pharma -they are mad at the whole thing.

People don’t just want better insurance. They want a different relationship with the system entirely.

[Terry Wilcox @Terrilox]

I really like this idea.
We've trained people and many employers to be completely passive about healthcare. Just hand over the premiums, cross our fingers, and hope the insurer doesn't screw us when we actually need it. That's why so few people even bother appealing denials. Insurance companies think in 12-month increments because that's how their risk pools and quarterly numbers work. They have zero incentive to invest in someone's long-term health.

What you're describing flips that completely. It puts people back in the driver's seat as the actual CEOs of their own healthcare. Instead of renting protection from a middleman every month, you're building something real with your own money. The DPC gives you a doctor who actually knows you, the stop-loss handles the nightmare scenarios, and the rest sits in your account hopefully growing and earning some interest if you stay healthy. The stop-loss component even gets rid of the need for catastrophic coverage?

I'm glad you're thinking beyond the employer-dictated model. I wish healthcare was not tied to your employer. My dad was a type 1 diabetic his whole life, and his biggest stress was almost always "do I have a job with good insurance?" Before the ACA, it was basically impossible for someone like him to get covered at all. The fear of losing coverage tied people to jobs they hated and made every career move terrifying. Redirecting what employers already spend on premiums into these kinds of personal accounts could finally start breaking that grip while still giving companies a predictable, controlled way to support their people.

Obviously plenty of details to hammer out but the core is powerful. It rewards staying healthy, encourages smarter spending, and actually builds wealth instead of just feeding the system. Tools and resources that help people think like owners instead of passive consumers?

Curious how you'd see this working on the employer side? Could they just redirect their current contribution straight into the account?