Insurance Claim Denied

“Not Medically Necessary”

/ Renee J / Leave a comment

Denied

I have a love/hate relationship with our insurance provider.

We have private insurance through my husband’s employer, and without it, we’d be well over $750K in debt. So in many ways, I am incredibly grateful for it.

But it’s not free.

Between premiums, deductibles, and out-of-pocket maxes, we are drowning.

So when the dreaded package arrives in the mail, informing us:

“This claim is denied. After our review, it has been determined this procedure was not medically necessary.”

It takes the wind out of our sails.

17492832_10155042694115502_762686812060261926_oA Simple Procedure, A Complex Condition

Last month, Jackson needed ear tubes—a routine, 15-minute procedure.

Not a big deal, right?

For most kids, no.

For a child with Congenital Hyperinsulinism, it’s not that simple.

The procedure required general anesthesia, which meant he had to fast from midnight before surgery.

And that’s the problem.

HI kids can’t fast for long periods. Their bodies require constant carbs to prevent dangerous hypoglycemia. Jackson typically needs to eat every 2.5–3 hours—even overnight.

Working with Texas Children’s Hospital ENT and Endocrinology, we made a plan:

  1. He was admitted the night before the procedure.
  2. He had a full dinner, then was placed on a dextrose (sugar) drip.
  3. For the first time in his life, he slept for nearly eight hours straight!

His blood sugar remained stable, and surgery went off without a hitch.

We were discharged 45 minutes later.

The stay and surgery? A complete success.

The Dreaded Envelope

Then, this week—it arrived.

The thick envelope from the insurance company.

By now, we know what it means:

  • An Explanation of Benefits (EOB)
  • An appeals package
  • Another denial

This time? The hospital stay was denied.

“Not Medically Necessary.”

I’ve appealed before. It’s not that I can’t do it.

It’s that I shouldn’t have to.

They have all of his medical records. They know his condition. They know fasting is life-threatening for him.

Yet, every time, I have to send the same information, over and over again.

It’s exhausting.

But I’ll do it.

Because now, a new fight begins—and the fear of assuming $4,000 more in medical debt hangs over our heads.

CGM – APPROVED!

/ Renee J / Leave a comment

After a long fight, the CGM was finally approved, and we love it!

We had to go through the State of Texas Independent Review Organization (IRO) for a final appeal, but UHC’s decision was overturned!

The reviewing doctor stated:

This young infant was diagnosed around four months of age with altered mental status and seizures. There was concern that he had been hypoglycemic and possibly experiencing seizures for some time. He has since stabilized on diazoxide. However, despite diligent blood glucose monitoring every three hours, frequent feedings, and conscientious medication administration, he continues to have severe hypoglycemia spells. He is unable to communicate symptoms with his parents, increasing the likelihood of severe hypoglycemia. This in turn increases his risk of brain damage and intellectual disability.

Use of a Dexcom G5 continuous glucose monitoring system would allow for near-continuous glucose monitoring, enabling the family to intervene as needed, preventing severe hypoglycemia and reducing potential risk for brain damage. This device is medically necessary and appropriate for this baby boy.

This battle involved hours on hold, countless phone calls, standing over fax machines, and more than a few tears on my end.

I’ll never understand why we had to fight so hard, but in the end, the reviewing doctor saw the severity of the situation and did the right thing.

Getting Used to the CGM

Right now, we have the CGM placed on his thigh. The first insertion was rough—he cried a lot—but we’re getting the hang of it.

He uses an iPhone as a transmitter, and as long as he’s on WiFi (like at daycare), I can check his sugar every five minutes through an app on my phone.

The system alerts us when his sugar is:
Dropping too fast
Under 70
Under 55

This device is absolutely worth the fight.

wehavehihopes cgm.png

Insurance Denies – CGM

/ Renee J / Leave a comment

Jackson’s endocrinologist requested a Dexcom G5 Continuous Glucose Monitor, warning us that insurance would likely deny it.

I seriously thought, there’s no way. How could they deny a device that could literally save his life?

Since Jackson’s birth, I’ve spoken to our insurance company many times—and honestly, they’ve always been pleasant to deal with. No issues at all.

So when they denied the claim—even after prior authorization—I was shocked.

Yes, I had been warned, but they had been so easy to work with before. I expected more from them.

The Call

I decided to call and talk to them.

Surely, if they understood Hyperinsulinism, they wouldn’t deny it, right?

Wrong.

Their reason?

“BECAUSE PATIENT DOES NOT HAVE TYPE 1 DIABETES, THIS DEVICE IS NOT MEDICALLY NECESSARY.”

Deep breaths.

So I calmly explained:
✔ He doesn’t have diabetes but has a disease that affects his glucose levels.
✔ He is severely hypoglycemic.
✔ If his blood sugar drops and I don’t catch it, he could suffer brain damage or worse.
✔ He’s six months old—he can’t tell me if he feels unwell. This machine would communicate for him.
✔ This machine isn’t just for diabetics—it’s for anyone who needs 24/7 blood glucose monitoring.

Still not enough justification.

The Appeal

In desperation, I submitted an appeal, explaining everything I knew about HI and begging them to reconsider.

Julie from Congenital Hyperinsulinism International also wrote a letter, urging them to look at the facts.

The truth is, if Jackson suffers brain damage, the long-term medical costs will far exceed the cost of this device.

It’s the right thing to do—and it would save them money in the long run.

They said they’d make a determination in 30 days.

So… we wait.