STATEN ISLAND, N.Y. -- For nine years, 11-year-old Ethan Goldner has controlled his type 1 diabetes with a fast-acting, manufactured form of human insulin.

That is, until Jan. 9, when his Prince’s Bay family’s insurance carrier said there must be a cheaper way.

The insurance carrier’s decision and the excruciating 12-day appeal process that followed as Ethan’s body rejected the cheaper drug filled their lives with fear and uncertainty as they watched their son’s health deteriorate.

It’s an example, his mother and father say, of what happens when insurance companies value profit over people. And it highlights how exhaustively patients must pursue their rights.

Type 1 diabetes is an autoimmune disease and unlike type 2 diabetes, cannot be reversed with diet and exercise.

Ethan will require insulin for the rest of his life.

PARENTS SAID THEY DIDN’T HAVE A CHOICE

Ethan was diagnosed with type 1 diabetes at the age of 2 and had been on Novolog uninterrupted since his diagnosis.

It’s not just diabetes and insulin when it comes to insurance companies deciding to cover only less expensive alternatives. For example, many will only cover the cheaper types and often generic brand of medications for a variety of illnesses and refuse to pay for the brandname or more expensive medications.

According to a new report, Novo Nordisk, the makers of Novolog, raised the price on some of its insulin products in 2019 by 4.9 percent. In the last five years, the cost of insulin medications used to treat type 1 diabetes has nearly doubled.

“We were forced to switch out of lack of a choice,” Adam Goldner said.

In the case of Goldner, he was told his insurance carrier has a new contract with the cheaper drug’s company and no longer has a contract with the makers of Novolog.

Ethan began the new drug on Jan. 11 and took it for seven days.

In that time, the 11-year-old experienced vision loss, nausea, dizziness, weakness and extremely high blood sugar. His body was rejecting the new insulin, Goldner said.

“[Ethan was] worried. He asked my wife why she’s always on the phone and why she’s always tired. He has no idea we’ve been taking turns staying up all night to monitor his blood sugar,” he said.

“He asked me if he’s going to die,” the father said.

On Jan. 21, the Goldners received the news they’d been hoping for -- the insurance carrier reversed its denial and said it would cover Ethan’s life-saving medicine for 2019. While good news, this means the Goldners will have to appeal again in January 2020.

The Goldner family gets its insurance through Adam, a Department of Education employee, from Group Health Incorporated (GHI).

APPEAL DENIALS AND LAW VIOLATIONS

Jennifer filed the appeal with the insurance carrier on Jan. 10 immediately after finding out it was no longer covering Novolog.

The initial appeal was denied by GHI, Goldner said.

On Jan. 17, a second appeal was filed by the Goldners. Adam said the family did not hear back from the insurance company in the allotted 24- to 72-hour window required by the state’s Step Therapy, or “fail first,” law.

Step Therapy is when an insurance carrier requires a patient to try a less expensive drug or treatment before it will “step up” and pay the price for a more expensive approach.

The Step Therapy law requires that all New York insurance carriers approve an appeal in an emergency situation with proof from the patient’s physician that the more expensive approach is required.

The insurance carrier “must respond to a step therapy override request within 24 hours if the request is for a patient with a medical condition that places the health of the patient in serious jeopardy without the prescription drug or drugs prescribed by the patient’s physician,” according to New York state law.

The bill was sponsored by former Assemblyman Matt Titone and signed into law in 2017.

Emblem Health, the parent company of GHI, said privacy laws prevents it from commenting on specific member cases.

An Emblem spokesperson issued the following statement: “We have a responsibility to protect the health and safety of our members and we take this responsibility seriously. We work with our members to achieve the best health outcomes and consider all relevant details when making decisions.”

The appeal was eventually approved on Jan. 21 for the remainder of 2019.

“To think how close we came to losing our son due to the greed of these corporations,” Goldner said.

Staten Island’s rate of diabetes, 8 percent, is lower than the citywide rate of 11 percent, however, Community Districts 1 and 3 -- the North and South shores of Staten Island -- both have a rate of 9 percent, which is higher than the borough’s average. Community District 2, or the Mid-Island, has a diabetes rate of 6 percent.