Insurance Warrior News
9/20/09
The Case of Little Nicholas
With healthcare reform in the news, I see the term "standard treatments" bandied about—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, we don't want to pay.
Not a covered benefit = It's out-of-network, we don't want to pay.
In-network treatments are rarely denied as "experimental," "not medically necessary," or "non-standard treatments." It's not a matter of clinical benefit, geography, or even of cost savings. 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 what they do pay for, and no lack of clinical evidence for what they don't pay for.
"Standard treatments" fall into the same Bermuda Triangle as all other insurance company words:
Standard treatments = In-network, what we have always paid for.
Which brings me to the case 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 baby, Nicholas needed surgery on his skull, and her insurer had denied the out-of-network surgeon. One of the mothers in Heather's online support group told her about me. Heather bought my CD ("The Sample Appeal"), and wrote an appeal herself. That appeal was also denied.
Heather received last month's email, "The $3.7 million man." When she saw that the insurer was Blue Cross Blue Shield of Michigan, she thought, "That is my insurer. Maybe Laurie will help me." This is how people find me. The planets align, and they are brave and bold enough to reach out to me.
Heather's six-month-old son 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 grow and expand in just the right places.
In approximately one out of every three thousand babies, one of more of the sutures fuses prematurely. Immediately, the skull begins to deform. Pressure on the brain starts to happen, bringing with it all manner of scary possibilties such as vision problems, seizures, and learning disabilities.
In order to fix cranial synostosis, part or all of the skull needs 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 the network
I asked Heather a few questions about her situation, and studied her two denial letters. I took a quick look at the expert surgeon-of-choice. This was September 4. Nicholas' surgery with Dr. Fearon in Dallas was scheduled for September 15.
"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 to keep Nicholas in network 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 dismantle Nicholas' entire skull, even though his defect only affects the back of his head. The second surgeon scoffed at the first surgeon's proposal of cranial stripping, saying, "That is totally out of date. We haven't done that in 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 with whom they should consult. Time was flying, Nicholas was already six months old, which is at the outside limits of optimum age for this surgery.
Two of the second round of surgeons were cleft-palate experts. The third facility on BCN"s recommended list had no pediatric plastic surgeon.
The appeal
I decided to take the case. I said, "Heather, you are going to need to be down in the trenches with me. I know nothing about this surgery, nothing about this condition. You are going to have to get me information that I ask for, call the insurance company and say what I tell you to say. We are in this 24/7 from now until the end of next week. Can you do that?"
I didn't have to give any further pep talks. Over the next sis days, I witnessed the determination of a mother, fighting for her baby.
I spent the next six days in my 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—talking to Medical Directors, finding out all she could about the progress of our appeal. At a certain point, she said, "This is fun!"
I said, "Do you realize that, when you contacted me three days ago, you were desperate, and now we are having fun fighting for this surgery?"
This is so not about insurance. It is about me bringing people through the fire, with their spirits up, their dignity intact, and their sense of humor in full swing.
The best of all possible worlds
Four days after receiving the 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 brave 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.
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Which brings us back to where we started. "Standard care" is a synonym for "in-network." Babies with synostosis are sent to in-network surgeons who specialize in breast reconstructions, cleft palates, and so on. Some never get to a pediatric 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 experts who get better outcomes than anyone else. They are often physician-scientists—publishing many scientific articles, constantly studying, publishing, and improving their outcomes.
They are not likely to be in your insurance company's network. Many of the true pioneers have stopped contracting with insurers at all. They don't want the headache, 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