Insurance Denies – CGM

Jackson’s endocrinologist requested that he receive a Dexcom G5 Continuous Glucose Monitor. He warned it would likely be denied by the insurance company.

I seriously thought, there’s no way. How could the insurance company deny a device that could literally save his life? I have talked to the insurance company several times since Jackson’s birth and truth be told, they’ve been incredibly pleasant to talk to. No issues whatsoever.

When the insurance company denied the claim, even after prior authorization, I was a little shocked. I know, I had been warned but they had been so easy to work with, I expected more from them. I decided to call and talk to them. Surely, if they understood Hyperinsulinism, there’s no way they would deny it, right? WRONG

Their reason? “BECAUSE PATIENT DOES NOT HAVE TYPE 1 DIABETES, THIS DEVICE IS NOT MEDICALLY NECESSARY”. Ok, deep breaths. So I go into a long drawn out explanation of HI, the risks and the need for continuing to monitor blood glucose levels. I try to stick with simple facts:

  • He doesn’t have diabetes,┬ábut has a disease that affects his glucose level.
  • He is severely hypoglycemic.
  • If his blood glucose level (BGL) 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 doesn’t feel good. This machine will communicate for him.
  • This machine isn’t just necessary for diabetics, it’s necessary for all people who have to monitor BGL 24-7.

That wasn’t enough justification. So in a desperate plea, I submitted an appeal. Telling them everything I knew about the disease and basically begged that they’d re-consider. Julie with Congenital Hyperinsulinism International also wrote a letter encouraging them to reconsider. Asked that they look at the facts. The truth is, if he suffers brain damage, the medical expenses will far exceed that than the coverage of this device. It’s the right thing for them to do and could save them money in the long run.

They said they’d make a determination on the appeal in 30 days. So… we wait.

Why we have “HI” hopes

Jackson was diagnosed with Hyperinsulinism (HI) September 2016, when he was four months old. After spending near three weeks at Texas Children’s Hospital in Houston, TX, we are now home and learning to manage this disease. We continue to have “HI” hopes for this disease. For a cure. For answers. For doctors to be able to identify this disease faster. For a long, fulfilling, future for our son and all of those affected by this disease.


https://ghr.nlm.nih.gov/condition/congenital-hyperinsulinism describes HI as: Congenital hyperinsulinism is a condition that causes individuals to have abnormally high levels of insulin, which is a hormone that helps control blood sugar levels. People with this condition have frequent episodes of low blood sugar (hypoglycemia). In infants and young children, these episodes are characterized by a lack of energy (lethargy), irritability, or difficulty feeding. Repeated episodes of low blood sugar increase the risk for serious complications such as breathing difficulties, seizures, intellectual disability, vision loss, brain damage, and coma.

The severity of congenital hyperinsulinism varies widely among affected individuals, even among members of the same family. About 60 percent of infants with this condition experience a hypoglycemic episode within the first month of life. Other affected children develop hypoglycemia by early childhood. Unlike typical episodes of hypoglycemia, which occur most often after periods without food (fasting) or after exercising, episodes of hypoglycemia in people with congenital hyperinsulinism can also occur after eating.

#wehaveHIhopes