The Insurance Intelligencer -- The Case of Little Nicholas

[Justin]

The Insurance Intelligencer
9/20/09

The Case of Little Nicholas

With healthcare reform in the news, I see the term "standard treatments" bandied about. Such-and-such a plan will cover standard treatments. As though there were such a thing.

Many of you have seen me unmask insurance company words:

• Experimental = It's out-of-network, and we don't want to pay for it.
• Not medically necessary = It's out-of-network, and we don't want to pay for it.
• Not a covered benefit = It's out-of-network, and we don't want to pay for it.

Rarely are in-network treatments denied as experimental, not medically necessary, or "non-standard." Insurers do not deny treatments based on clinical benefit, geography, or even cost. It's simply a matter of in-network vs. out-of-network.

I have dug deeply into the rationales (scientific reasons) that insurers offer to support such denials. There is nothing there. No science. No clinical evidence for the treatments they do pay for, and no lack of clinical evidence for the treatments they don't pay for.

"Standard treatments" fall into the same Bermuda Triangle as all other insurance company words:

• Standard treatments = It's in-network, and thus we pay for it.

Which brings me to the story of little Nicholas ...


Nicholas needs major surgery on his skull

I am often asked, "How do people find you?" Short answer -- in the most amazing ways.

Two weeks ago, I received an email from Heather in Michigan. Heather's six-month-old son, Nicholas, needed surgery on his skull, and her insurer had denied the out-of-network surgeon. One of the mothers in her online support group told her about me. Heather ordered my CD ("The Sample Appeal"), and wrote an appeal herself. That appeal was also denied.

Heather received last month's newsletter, "The $3.7 million man." The insurer in that case was Blue Cross Blue Shield of Michigan. She thought, "That is my insurer. Maybe Laurie will help me." The planets align, and then people are brave and bold enough to reach out to me.

Nicholas had a malformation of the skull called "synostosis." The different parts of the skull are joined together by bands of fibrous connective tissue called "sutures." When babies are born, these sutures are relatively loose and open. The suture lines fuse gradually, as the baby grows. This is an elegant system -- designed to protect the brain, while also allowing it to expand in just the right places.

In approximately one out of every three thousand babies, one or more of the sutures of the skull fuse prematurely. The skull immediately begins to assume an abnormal shape. Pressure on the brain can bring all manner of scary possibilities such as vision problems, seizures, and developmental delays.

In order to fix cranial synostosis, the skull has to be removed, reconstructed, and put back together. With just enough "give" in the right places to allow for unobstructed growth of the brain. This surgery is as complex as it sounds. It is also fraught with danger -- the most common surgical complication being massive bleeding.

A cranial reconstruction by a top-notch surgeon is a work of art.


The insurer wants to keep Nicholas in-network

I asked Heather a few questions about the medical story, and studied her two denial letters. I looked at the qualifications of her surgeon-of-choice. Nicholas' surgery with Dr. Fearon in Dallas was scheduled in ten days.

"The insurance company doesn't want you to go to Dr. Fearon. What do they want you to do?" I asked.

Heather explained to me that her HMO -- Blue Care Network -- wanted them to choose an in-network surgeon for this complex cranial surgery that would determine the quality of the rest of his life.

One of the in-network surgeons proposed an endoscopic "cranial stripping" surgery. The other wanted to completely dismantle Nicholas' entire skull, even though his defect only affected the back of his head. The second surgeon scoffed at the first one, saying, "That technique is way out of date. We haven't done cranial stripping for ten years ... poor outcomes."

In their first denial, Blue Care Network suggested that they look to Nicholas' primary care provider for guidance. The PCP's guidance consisted of, "I don't know anything about either procedure."

In their second denial, BCN came up with three more in-network surgeons, and instructed Heather and her husband to make an appointment with one of them. Time was flying. By this time, Nicholas was six months old -- the outside limit of optimum age to have this surgery.

Two of the second surgeons were cleft-palate experts. The third facility on BCN's recommended list had no pediatric plastic surgeon on staff.


The appeal

I said to Heather, "I will take this case. However, you are going to need to get down in the trenches with me. I know nothing about this condition, nothing about this surgery. I have no proof in my files, and I have no cases of precedent. You are going to have to get me the information that I ask for, call the insurance company and say what I tell you to say. Can you do that?"

Over the next six days, I witnessed the blazing determination of a mother, fighting for her baby.

As for myself, I spent the next three days in my famous worn-out pajamas. I digested scientific articles, websites, book chapters. Then I wrote. Thirty-four pages of persuasive expository prose.

Heather became quite the sleuth -- pressing her case, talking to Medical Directors, finding out what she could about the progress of our appeal. At a certain point, she said, "Isn't this fun?"

I said, "Do you realize that, when you called me three days ago, you said that you were desperate? Now we are having fun, fighting tooth and nail for this surgery."

This is so not about insurance. It is about bringing people through the fire, with spirits up, dignity intact, and sense of humor in full swing.


The best of all possible worlds

Four days after receiving my 34-page appeal document, Blue Care Network decided to pay it all. Never was there more joy at winning an appeal.

The approval came on Thursday, and the family flew to Dallas on Sunday. Little Nicholas had his surgery on Tuesday morning -- a complete success. He is already back in Michigan, sleeping in his own crib.

********

Which brings us back to where we started: Standard treatments. "Standard" is a synonym for "in-network." Babies with synostosis are sent to in-network surgeons who specialize in breast reconstruction, cleft palates, and so on. Some never get to see a pediatric plastic surgeon at all. This would be your standard care. If the surgeon is in-network, he is standard, and he will do.

In writing appeals for all sorts of diseases and conditions, I have learned that there are always one or two physicians who are getting better outcomes. They are often physician-scientists -- publishing many scientific articles, inventing surgical tools, constantly studying, publishing, and improving their outcomes.

They are not likely to be in-network for your insurance. Many of the true pioneers have dropped most of their insurance contracts. Why? The don't need the headaches, and they are weary of the pitiful reimbursement. They are too busy saving lives.

This is your six-month-old son. Is "standard" good enough for you?


Happy and peaceful Insurance Warrior-ing,

Laurie Todd
http://www.theinsurancewarrior.com/

[Cindylou]

Hat's off to Laurie once again, for fighting the good fight....in this case for little Nicolas.....a 6 month old, who could have been yours, mine, anyone of us lttle child, grandchild, niece, god-child, great-grandchild. God bless Laurie, The Insurance Warrior.

[KBear]

What an inspiring story and I am so happy that this baby got the surgery he needed. Thanks of sharing.