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Old 07-29-2010, 08:00 PM
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Harrison Harrison is offline
Join Date: Oct 2004
Posts: 7,016
Default The Insurance Intelligencer 7/29/10

Not enough scientific proof?

How many of you have had a treatment denied, written an extensive appeal, then lost -- only to be told, "There is not enough long-term scientific proof"?

Insurers love this reason for denial. They love it so much, that they often say it, even when it is not true. It sounds so factual, so fair, so indisputable.

I have never lost an appeal for "not enough scientific proof." And I do not want any of you to ever lose an appeal for this reason.

There are many ways to overcome this objection. Let's talk about one of them ...

Evidence-based medicine?

When your insurance company is being ridiculous, you need first to recognize it, and then point it out in your appeal.

In 2009, I took on the case of Amy from Colorado. She had an advanced case of ovarian cancer, which had spread throughout the abdomen. For several years, her local doctors had been treating her with repeated "debulkings," and systemic chemotherapy.

"Debulking" means "taking out the bulky tumors, and leaving the rest." What if you had breast cancer? Would it make sense to you to if the surgeon said, "We will take out the big tumors, and leave the rest"? Not the most effective approach.

Only problem is, it is much more difficult in every way to clean all visible tumors out of the abdomen than it is to remove all visible tumors out of the breast. There are surgeons who know how to do it. However, the are not usually local, and they are not often in-network.

Finally, after years of recurrences and more treatments, Amy happened to hear about the one definitive treatment for cancers which have spread throughout the abdomen -- cytoreductive surgery and hyperthermic intraperitoneal chemotherapy (HIPEC). She wanted to get to the surgeon with the best documented long-term outcomes with this complex surgery and treatment.

All of Amy's available appeals had been denied. It was now my job to get the denials reversed, and the treatment approved.

Turnabout is fair play

When I write an appeal, I do my best to anticipate whatever arguments the insurance company is going to come up with. After winning sixty lifesaving appeals, this is fairly easy to do.

Insurance companies have paid for cytoreductive surgery and HIPEC hundreds if not thousands of times. Many of the insurers' medical policy statements endorse this treatment -- for appendix cancer. Not for ovarian cancer.

The standard treatment for ovarian cancer is repeated debulkings and systemic chemotherapy. If the patient is lucky, they may get IP chemotherapy along with the debulkings. This is what they do, doctors and insurance companies are very comfortable and attached to this treatment regimen -- regardless of how effective or ineffective it may be.

Wake-up moment: Just because a treatment is routinely offered in-network, doesn't mean that it is effective, the most effective, or scientifically proven.

I stayed up half the night, learning about ovarian cancer, the treatment of it, the scientific articles about it. I found the followin gold nugget, and I presented it in the appeal:

I quote from Peter Schwartz, MD, John Slade Ely Professor of Obstetrics, Gynecology, and Reproductive Sciences, Yale University School of Medicine:

"The standard management for previously untreated advanced-stage epithelial ovarian cancer is optimum surgical debulking followed by aggressive cytotoxic chemotherapy. This approach is based on a retrospective review of a single-institution experience published more than thirty years ago and has yet to be confirmed in a prospective randomized trial."
(Schwartz, PE. Cytoreductive surgery in the management of ovarian cancer. Oncology 2008; Vol 22:9.)

When I found this, I almost fell off my chair. The standard treatments that are offered all over the United States for ovarian cancer are based on one scientific article -- a retrospective study of patients at one institution, published more than thirty years ago. No randomized trial, no long-term outcomes.

The insurer is not offering "evidence-based medicine." It is rather embarrassing, when I point this out to them in an appeal.

The same is often true, regardless of the treatment. Need artificial disc replacement? They tell you there is "no scientific proof of long-term outcomes"? How much scientific proof do they have for the treatment that they do offer -- spinal fusion? Zero.


Insurers need to be held to the same standards to which they hold us. You and I -- the patients who are denied -- are the only ones who are going to do it.

When we request a treatment that is either out-of-network, or more than fifty miles from our house, the insurer demands a level of proof that they would be hard-pressed to provide for the treatments that they ARE offering.

The emperor has no clothes.

When your insurer is being ridiculous, you need to recognize this, and point it out to them in your appeal.

Happy and peaceful Insurance Warrior-ing,

Laurie Todd
"Harrison" - info (at)
Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
Old 10-03-2010, 07:33 PM
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Harrison Harrison is offline
Join Date: Oct 2004
Posts: 7,016

The Insurance Intelligencer

October 4, 2010 is a very important day in the history of Insurance Warrior-ing. It is the fifth anniversary of the fourteen-hour surgery that saved my life.

In order to get this lifesaving treatment, I had to learn that my local doctors were not telling the truth. They lied to me, and they were dead set against my having this treatment. I had to confront the full bureaucratic might of my insurance company, which had no intention of paying for it. All while fighting a late-stage abdominal cancer. All because the one treatment that would save my life was "out-of-network." If this month's newsletter sounds like a cry from the heart .... it is. It's all about the networks...

A little history

When treatments are denied, people go first to the insurance company for help, then to their doctor. This demonstrates that insurance companies have been very successful in hiding how this system really works.

Going to the insurance company for help when treatments are denied is like going to the fox for help, when chickens go missing from the henhouse. It is the fox's job to take a chicken for his dinner, and it is the insurer's job not to pay.

There is nothing bad or evil about this, it is just the way of life. An insurance company is a business, and a business is tasked with reducing operating expenses. To your insurer, any money that they spend on medical treatments is considered the "medical loss ratio." It is critical to your insurer to reduce this "loss" as much as possible, every month. If they don't their institutional investors will rush to another insurance company -- one that pays out less for medical treatments.

Doctors and networks

Going to your doctor for help, when treatments are denied? The entire system of "managed care" was designed to take away the power of doctors, so as to limit their ability to order expensive tests and treatments. Before 1970 or so, insurance companies and doctors were two separate entities. If the insurance company denied a treatment, your doctor had the power to go to bat for you.

Health insurers came up with an extraordinarily effective way to control doctors, with a diabolically friendly name: managed care. We manage. We care.

There is very little difference between HMOs and PPOs. PPOs are simply HMOs, hiding behind an illusory "out-of-network" benefit. In the PPO, out-of-network treatments have to be pre-authorized, and are often denied. Further -- and herein lies the biggest deception -- when PPOs do pay for out-of-network treatment, they pay based on a percentage of a secret number which they themselves generate -- the "reasonable and customary" shell game.

The danger of networks and medical care goes far beyond denial of out-of-network treatments. I had a late-stage, metastasized abdominal cancer. The in-network doctors had no curative treatment for it. Their plan was to do more surgeries as my tumors repeatedly filled my abdomen, then to watch me die. There was no scientific proof that these treatments would extend my life, or improve its quality in any way. There was a tried-and-proven treatment for my disease which had been practiced for over thirty years -- cytoreductive surgery and HIPEC -- with hundreds if not thousands of peer-reviewed medical journal articles, consensus statements, and other proof of its safety and effectiveness.

My local in-network doctors were not the slightest bit interested in this treatment. They did all they could to discourage me from getting it. Why? Because it is out-of-network; therefore it does not exist. When physicians have lived with networks for two generations, we have a world where ignoring the one treatment that can save your life -- or your child's life -- is encouraged, rewarded, and exceedingly OK.

Networks also nurture the concept that it is the job of a healthcare delivery system to treat the greatest number of people, with the most common illnesses, and offer the lowest common denominator of treatments.

I was watching the Today show last week. Matt Lauer was interviewing a guest about the latest in health insurance. The guest mentioned that, if you go out of network, the costs can be astronomical. Matt smiles and says, "So, just don't go out of network, right?" Smile and say that again, Matt, when your child has an aggressive, fast-moving brain tumor, and the only surgeon who can remove it is out-of-network.

A PPO is really an HMO

The dark heart of all healthcare plans -- PPO or HMO -- is networks. Doctors can be squeezed, harrassed, disempowered, and underpaid in this "network" system. Insurers are empowered to rob, abuse, injure, mislead, and often kill those who seek effective treatment within this system.

Networks are a vast body of contracts. Insurers have had fifty years to perfect these contracts so as to retain all decision-making power to themselves. Contracts between insurers and doctors, contracts between insurers and patients. Many of these contracts between you and your insurer state: "A treatment is medically necessary if the medical director of Acme Insurance says that it is medically necessary." Because we say so. We who are going to have to pay for it.

Does this not sound like the world's worst conflict of interest to you? Why aren't millions of insured people marching in the streets? Because insurance companies have had fifty years to perfect the managed care system. They have also had fifty years to perfect the publicity machine that makes them look like wise, benevolent, benign social service agencies who are there to help us.

Want to reform the healthcare system? Abolish. All. Networks.

To ignore a treatment because it is out-of-network is wrong.
To deny a lifesaving treatment because it is out-of-network is wrong.
The worst, in my estimation? To lie to a patient to discourage them from going out of network.
In a healthcare system based on networks, it happens every day.


And so, we end where we began. On October 4, 2005, I arrived at Washington Hospital Center in Washington, D.C. at the crack of dawn. I underwent a big whomping surgery, a whole lot of intraperitoneal chemotherapy, and forty days of abject misery in the hospital. I won't sugarcoat it.

I have not needed any medical treatment since I returned from Washington, D.C. in December 2005. I have had no recurrence, I remain free of disease. I eat Mexican food. I'm fine.

I just finished writing appeals #64 and #65. I have written and published two books during the past five years, and sold a few thousand copies of them. I have travelled all over the United States, speaking before all manner of groups. I speak to them about how, when life suddenly spins out of control, it is possible to win great victories.

A new career found me, right in the place where I was fighting, learning and living. I became the Insurance Warrior.

The fact that all of this grew from those perilous days amazes me. All that I did was show up, take my lumps, do the important things right, and cultivate an open heart. Had I believed my local doctors -- and the insurance company who denied me -- I would be long gone, and none of this would have happened.

As far as I'm concerned ... it happened just as it needed to, and it is all good.

Happy and peaceful Insurance Warrior-ing,

Laurie Todd
health insurance help
"Harrison" - info (at)
Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
Old 10-03-2010, 11:35 PM
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Tatonka_usn Tatonka_usn is offline
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Posts: 81
Default Very powerful!

All I can say is WOW!! Can't recall anything echo'ing my inner thoughts in quite some time. Very profound, and VERY accurate.

4/07:LBP + radiculopathy=severe L5-S1 herniation , 7/07:Micro-D, 08-09:Reherniation, 09-17: periodic residual symptoms (conservative modalities to maintain "stability" = prolotherapy, ESI/nerve blocks/facet injections, chiro, massage, phys ther), 7/17 pain in neck/right shoulder radiating into hand (no trauma involved), 7-10/17 Conservative treatment to date include physical therapy/dry-needling/facet-injections (C4/5 to C6/7). Researching surgical options should progression continue.
Old 12-03-2010, 11:47 AM
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Harrison Harrison is offline
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Posts: 7,016

Employers and insurers: Dangerous Liaison?

I recently happened across an article entitled, "Tax breaks for employer health plans a target." The article continues:

"Job-based health care benefits could wind up on the chopping block if President Barack Obama and congressional Republicans get serious about cutting the deficit."

Really? I may just be in favor of this.

An accident of history

Sometimes, when things have been a certain way for two or three generations, we come to believe that they have always been that way, they have to be that way, they can be no other way.

Once upon a time, slavery was considered to be the way of life and business in the United States. It had been that way for generations, it was impossible to imagine any other way. We can look back on slavery now, and say, "It was a terrible idea. The world's worst idea."

It is a pure accident of history that, in the United States, health insurance came to be hooked up with employment. In my estimation, it is a terrible idea, and one that doesn't have to be.

Lose your job, lose your insurance

Can anyone think of reasons why having your employer provide your health insurance might be a bad idea?

I have been fighting lifesaving appeals for five years. I just won appeal #66. If you can't think of any reasons why having your employer in charge of your health insurance is a bad thing ... I can. I have seen this unholy alliance wreak havoc on the lives of people who are ill, and on their families.

When your employer provides your health insurance ...
If you lose your job, you lose your health insurance.

You have to work when you are sick, or you will lose your job, and you will lose your health insurance.
Is this not insane? It just doesn't add up. Who is it that decided that people should lose their health coverage if they are too sick to work?

How exactly are people supposed to continue working ... after they have a fourteen-hour cancer surgery, or they have a bone-marrow transplant, or they are paralyzed on one side from a stroke. Health insurance should not be dependent on one's ability to work, because being sick (i.e., needing one's health insurance) often makes one unable to work.

When your employer IS your insurer

But it gets worse. Insurers have quietly been promoting the living daylights out of "self-funded" plans. If you haven't gotten the message from me yet ... in a self-funded plan, you give up most of your rights, and your employer is granted divine rights over your life and death.

These self-funded plans are such sweet deals for insurers ... without you knowing it, they have infiltrated employer-based group insurance all over the country. Two-thirds of the employed people in the United States now have self-funded plans. In my experience, zero percent of these employees know that they have a self-funded plan, or what a self-funded plan means.

Does it sound like perhaps insurers may not want you to understand what you are getting into, when you choose a self-funded plan?

When you have a self-funded plan ...

The money to pay for your medical treatments does not come from the insurance company. It comes directly out of your employer's bank account. The insurer has hoodwinked the employer into assuming financial risk for your medical treatments, and doing the dirty work of denying those treatments.

Your employer has sole decision-making power on all of your benefits. In other words, your employer gets to decide whether or not your child gets a heart transplant. Heart transplants can cost in excess of $1 million.

In a self-funded set-up, the insurer magically changes itself from an insurer to a "third-party administrator." Therefore, your state's insurance regulations no longer apply to them.

Your employer is not an insurer, either. The only law that governs self-funded plans is federal law (ERISA). Good luck calling the Department of Labor about your denial of treatment. You could appeal it, but you would need to hire a lawyer to navigate the ERISA system. Plus, it could take a year to win it. Good luck with that.

How do insurance companies get employers and employees to sign up for this bad deal? It's easy ... the costs of a self-funded plan are less for the employer, and the monthly premiums are less for the employees. For that, you are essentially selling your life to the company store. Penny wise, and pound foolish.

Of course, many of us have to submit to a self-funded plan, because it is all that our employer offers. Wait a minute ... what about all of that choice and competition and free market economy that was supposed to bring down the cost of health insurance? With employer-based health insurance, we often have no choice.

How does this self-funded thing play out in real life? Employees who are desperately ill with cancer find themselves fighting their insurers AND their employers when treatments are denied ... all the while fearing that they may lose their jobs, and their health insurance.

Guess what happens when an employee puts too much of a drain on a self-funded system? A longtime friend of mine worked for a company for twenty-three years. She had two bouts with cancer while working there, plus other chronic health problems. The company laid off forty-seven people at once, including my friend; forty-two of them had had expensive cancer treatments while working there. Coincidence?

In what universe is this a good idea? It is not only cruel, but ignorant. Who decided that Boeing or Microsoft or Acme Widget Company is qualified to decide whether or not you need brain surgery ... or to get rid of you if you need too much brain surgery?

There has to be a better way

One of the goals of the Affordable Healthcare Act (Is your healthcare any more affordable since it passed, by the way?) was to reduce the number of uninsured people in the United States.

Since the Affordable Healthcare Act passed, the number of uninsured people has risen by at least 2.8 million. Why? Because they have lost their jobs. In March of 2009 alone, 320,000 people lost their jobs, and became uninsured. COBRA lasts but a short time, and they will soon have no insurance. What can the Affordable Healthcare Act do about that, as long as health insurance is tied to employment?

What about those "risk pools" that many states have, where the "uninsurables" among us (that would be most of us) can get insurance? Last time I checked, the monthly premium in my state for a 50-year-old non-smoker was $986 per month. Does that fall under your definition of "affordable" ... particularly if you are applying for it because you lost your job?

And so, I find myself in the strange position of agreeing with the GOP on this one. By all means, let's cut the several hundred billion dollars in tax cuts that are given to employers for making medical decisions, side-stepping state insurance regulations, and taking away our health coverage just when we need it the most.

Employers have no business offering health insurance, administering health insurance, paying for medical treatments, or deciding about medical treatments. An employer should have ultimate power over our jobs -- not over our lives.

Someday, we will look back on this system of employer-administered health insurance, and say, "How could anyone ever have thought that was a good idea?"

Holiday cheer and peaceful Insurance Warrior-ing,

Laurie Todd
health insurance help
"Harrison" - info (at)
Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
Old 01-25-2011, 10:48 PM
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Harrison Harrison is offline
Join Date: Oct 2004
Posts: 7,016
Default Are You Covered? Think Again...

I've been sharing Laurie's newsletters for some time now (years), and some of us who take the time to read her analysis have been rewarded with her insights. We've also been troubled with her findings. Sorry to be gloomy, but tell me I am wrong...then explain why.
__________________________________________________ ___

Insurance Warrior News - 1/24/11
Expensive prescription drugs: Are you covered?

Over the past thirty years, total spending for healthcare in the United States has more than doubled as a percentage of the gross national product (GNP). As of 2010, this figure stood at 17.3% of GNP. The Congressional Budget Office estimates that this figure will grow to 31% of GNP by 2035, and 46% of GNP by 2080. Imagine 46% of the total market value of all of the goods and services in the United States being spent on healthcare.

The cancer drug Erbitux costs $4,700 per month in the England, $12,000 per month in the U.S. In a report published in 2009, the Department of Health and Human Services projected that prescription drug spending would increase from $234.1 billion in 2008 to $457.8 billion in 2019 -- almost doubling over the 11-year period.

I do not approve of the subterfuges and strategies that insurance companies use to shift costs to patients. However ... no private insurance company, no government, no entity of any kind has enough money to pay these wild, astronomical, out-of-control medical expenses. Rather than face the terrible problem of runaway hospital costs, drug and medical device prices, insurers have come up with a million ways not to pay for them. Or, when they pay, to pay as little and as late as possible.

Until we get to the bottom of why medical care costs twice as much in the United States as it does in Europe, all efforts to make insurers really cover us will only result in the insurers finding new and more clever ways not to pay.

Nobody can afford these charges -- least of all the patients.

A case in point: Expensive prescription drugs

Over the past couple of months, three cases about expensive prescription drugs have come my way. I did not end up writing appeals for them, but I did enough research to get a glimpse of the "cost containment approachs" being used by both Medicare and private insurers with regard to prescription drugs.

Which drugs are insurers most likely to not pay for? Expensive drugs.
Which drugs are most likely to be expensive? Drugs used to treat cancer.
How do insurers get out of paying for expensive drugs? Let me count the ways ...
1. The formulary. You have prescription drug coverage -- that doesn't mean that your insurer will pay for every drug that you may ever need. It means that they will pay for the drugs that they choose to pay for. This list is called the "formulary." If the insurer wants to shave a bit off their operating expenses, all they have to do is eliminate a few of the most common drugs -- or the most expensive ones.

2. Percentage co-pays. I studied the formulary for one of the expensive drug denials. I noticed that formularies look very different than they did twenty years ago. On this current formulary, the less-expensive drugs had a dollar-amount co-pay -- $10, $20. When the list got to the more expensive drugs, the co-pay magically turned into a percentage. Erbitux, $12,000 per month. Even if the insurer approves it, you will be paying whatever percentage the insurer chooses -- in this case, 40%, or $4,800 per month. That's a pretty hefty price tag, when you are taking Erbitux for recurrent colon cancer, and you can't work.

3. Medical policy statements. On top of these other hidden icebergs, every insurer has hundreds of medical policy statements -- for other medical procedures and treatments, and for expensive drugs. These documents explain all of the reasons why the insurer won't pay for these drugs or medical treatments. Or, they explain which under which limited circumstances they will cover them.
Off-label use

When I delved into these drug cases, I discovered something shocking. After fighting sixty-nine appeals, it takes a lot to shock the Insurance Warrior.

When the FDA approves a drug for sale, it specifies what conditions the drug should be used for. The FDA also states the doctors are welcome to prescribe these drugs for other uses -- "off-label use."

I learned that there is a law on the books stating that Medicare will not pay for drugs which are prescribed for off-label use. What is so shocking about that? One out of every five prescriptions written by doctors in this country is for an off-label use. With one regulation, Medicare gets out of paying for one-fifth of all prescriptions that are written. But it gets worse ...

One out of two prescriptions for cancer drugs are for off-label uses. Plus, cancer drugs are the most expensive drugs. What a great cost-savings! With one law, Medicare gets out of paying for one-half of all prescriptions for these pesky expensive cancer drugs!

As of this year, private insurers denying more expensive drugs, and invoking Medicare rules as the reason for their denials.

Ignoring the medical policy

I recently received an email from Jim in California: "Anthem Blue Cross of California denied Avastin, my wife's treatment is supposed to start next week. Can you help?" Anthem's denial stated that Avastin "is experimental for this condition." Jim's wife was diagnosed with primary peritoneal cancer.

I found Anthem's medical policy statement for Bevacizumab (Avastin) on their website. It took me five minutes to find the list of diagnosis codes for which they would approve Avastin. Lo and behold, there it was: "158.0-158.9 -- Malignant neoplasm of the retroperitoneum and peritoneum."

Anthem had denied Avastin for a use that was expressly allowed in their own medical policy statement.

I sent Jim a copy of the med policy, and told him to point this out to his doctor, and to put that page of the medical policy statement in front of the correct decision-makers at Anthem. Anthem immediately approved the drug.

There are two possibilities of what happened there; both are equally bad:

Anthem doesn't bother to read their own medical policies before denying a treatment.

Anthem knows full well that they approve this drug for this use. They bet on the fact that neither the patient nor his doctor will never find the medical policy statement.


Which brings me to the most cruelest tool in Medicare's arsenal -- the compendia. The compendia are so cruel, because they look like something that will help us.

Medicare will cover anti-cancer drugs for off-label use -- if they are mentioned positively for the requested use in one of four designated drug compendia. Of course, these encyclopedias of prescription drugs are published by private companies, nobody is overseeing what they publish, and they each contradict the other. But that's not the worst of it.

When your $12,000 per month Erbitux is denied, you can simply look it up in one of the compendia, find a positive mention about it for your condition, and report this to the insurer, right? No, wrong. Joke's on you. Nobody has the compendia.

Your doctor doesn't have the compendia. The public library doesn't have the compendia. Your local medical school library doesn't have the compendia. Amazon has copies of one of the four compendia; it costs over $300, and is three years out of date.

In one of the drug cases, my helpee had a fast-moving cancer. She had already been through all of the usual chemotherapies. Her doctor had prescribed Sutent, and the insurer had denied it for her disease.

Sutent is made by Pfizer. When I found out that my helpee's sister-in-law works for Pfizer, I said, "Eureka, we have an inside track!" I assumed that Pfizer -- a drug manufacturer -- would have ready access to all of the four compendia that dictate what drugs get paid for by insurers. The sister-in-law could look up Sutent, find a couple of positive mentions, and it would be a slam dunk.

Guess what? Drug companies do not have the compendia.

Do you really think that the average cancer patient in immediate need of a cancer drug will be able to dig up these books, when the combined efforts of the Insurance Warrior and a scientist at a drug company couldn't produce them?

It's so cruel that it boggles the mind. Perhaps if these drugs didn't cost so much, the payors wouldn't have to go to such extravagant lengths not to pay for them.

Happy and peaceful Insurance Warrior-ing,

Laurie Todd
"Harrison" - info (at)
Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
Old 01-26-2011, 12:29 PM
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Jstuckey Jstuckey is offline
Senior Member
Join Date: Nov 2010
Posts: 305

Interesting and frustrating.

Any knowledge of how an insurance company can deny and say "investigational" when it was FDA approved over 6 years ago? At what point do they switch off "investigational" and consider approving a device? Is there any logic to making that decision, or is there absolutely nothing concrete? Sent my 4th appeal, and waiting on my 4th denial right now, but hoping, by some miracle, I've sent my pre-authorization company (Med-Cert) the studies that prove ADR is no longer investigational. Then I'll probably have to move to the next step of battling the insurance company themselves, even if pre-authorized!

Ready to head to the UK....
Joey Sue - 50 years old
9/28/2011: Hybrid STALIF TT interbody fusion at L5-S1 and M6-L ADR L4-5 with Nick Boeree, UK - forever grateful to you Nick! Still doing great.
Prior to the fix: Severe DDD L4-5 and L5-S1 with moderate facet degen at L5-S1, but only mild facet degeneration at L4-5.
Old 02-24-2011, 05:43 PM
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Harrison Harrison is offline
Join Date: Oct 2004
Posts: 7,016
Default Little Oliver

The Insurance Intelligencer
"You can't appeal it, because we didn't deny it:"
The case of little Oliver

Most of the cases that I write appeals for these days are not denials. I am appealing treatments that have been approved. How can this be?

I am appealing expensive surgeries and treatments that have been approved at the out-of-network rate.

In a PPO plan, you pay more for monthly premiums, co-pays, co-insurances, out-of-pocket expenditures. You pay more for everything. You pay all this so that you can go anywhere you want for treatment, and your insurer will pay 80%. That's how a PPO works, right?

Wrong. Joke's on you. You just got sucked in by the biggest con game in the history of health insurance. People who blithely go for expensive out-of-network treatments or surgeries just climbed on the slippery slope to the poorhouse.

A PPO approval is the same as a denial

Why am I not seeing so many outright denials these days? Because you can appeal a denial ... and you may win. Insurers don't want to devote resources to dealing with appeals, and they don't want to pay for expensive treatments. How to shut the door firmly, without leaving you any recourse?

Thus was born the PPO. Make the insured people believe that "they can go anywhere," and "we will pay 80%." Make them pay more for everything -- higher monthly premiums, higher co-pays, higher co-insurances. When expensive out-of-network treatment or surgery is needed, send a letter that says, "Treatment APPROVED!" Just don't tell them what you are going to pay 80% OF. Keep that a huge secret. Just tell them it's approved.

Make sure that they go into that surgery believing that it's all taken care of. As long as they stay ignorant until after the surgery date, you're home free ... because after the surgery, they're sick, they're weak, the bills are going out. They have lost their leverage, and you won't have to pay for it.

Finally, the doctors -- who have been paid $400 for a $30,000 surgery -- start balance-billing the patients. You can then blame their problems on the "greedy doctors."


Little Oliver needs his head fixed

Which brings me to the case of little Oliver in California. I have written eight appeals for children with craniosynostosis. These children are born with one or more of the sutures of the skull prematurely fused. The minute these sutures fuse, the head -- and brain -- is prevented from growing in the right directions, and it starts growing in the wrong directions. This results in an unusual appearance, and scary possibilities for the brain if not correctly treated.

The surgery to fix these children's little heads is a mixture of art and science. Insurance companies would just as soon have you take your child to the local in-network plastic surgeon who specializes in breast enhancements and liposuction, rather than a pediatric craniofacial surgeon who specializes in this condition. Hey, he's an M.D. That's good enough for the insurance company.

Think you will never need out-of-network treatment? Do you believe that every surgeon with an M.D. is created equal, and every treatment that you could possibly need from cradle to grave is available locally, and in the insurance network? Say that to me again, when you are diagnosed with a difficult brain tumor, and none of the local talent have the skills to remove it.

Oliver's insurance company -- Anthem Blue Cross of California -- has approved his surgery with out-of-network craniofacial surgeon Dr. Fearon in Texas. Only problem? They have approved it at the "out-of-network" rate.

Insurers will fight to the death any attempt to get them to reveal how much they will be paying. However, around the time that Oliver's case came up, a Blue Cross and Blue Shield company revealed how much they were planning to pay Dr. Fearon for this surgery. The billed charge for Dr. Fearon and his assisting surgeon combined is about $28,000. Blue Cross and Blue Shield approved the surgery as out-of-network, and planned to pay $1,000 for it. The patient would be responsible for the $27,000 that they didn't pay. This is really how little they pay.

Sound lke good coverage to you? Let's say you have a $28,000 car, and full coverage with your auto insurer. The car is totalled, and the insurer gives you a check for $1,000. Are you outraged? Are you hollering and screaming at everyone who will listen? Why are people not hollering and screaming about this cruel scam that is the PPO?

How to appeal the approval

If the insurer says that I can't appeal, that is not going to stop me. It's easy -- I just don't call it an "appeal." I call it a "request for reconsideration."

It's all about the words. Treatments are denied with words. Denials are overturned by taking the insurer's words, and turning them to our advantage.

As I look back on it, the plain old denials were a whole lot easier to fight than these deceptive approvals. I have always had to get up very early in the morning to get ahead of insurance company words. In 2011, I have to get up in the middle of the night.

That's exceedingly OK. I will rest when the case is won, the expert surgeon is paid fairly for his work, and the child is home sleeping in his own bed -- with a perfect, round head.

After a few days in the trenches, we won Oliver's "Urgent Expedited Request for Reconsideration." He had his surgery last Wednesday, and is happily playing at home in California with his friends, and his favorite goats. The big challenge for his parents is to keep him from running around and being too rambunctious, as they are keen to protect his perfect head.

Peaceful Insurance Warrior-ing,

Laurie Todd
health insurance help
"Harrison" - info (at)
Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
Old 03-23-2011, 01:10 PM
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The Insurance Intelligencer 3/23/11
Appeal #71: Brandon's story

We accept insurance "networks" as a given. They are not a given; they were invented forty years ago by insurance companies.

Most of the appeals that I fight nowadays are not for denials -- I am fighting out-of-network APPROVALS. Did you know that it is possible to appeal an approval? Or that, if you are going out-of-network for something expensive, you had better appeal it. Why? Because PPOs are a deception. They compute their "70%" or "80%" based not on billed charges, but on a secret number which they themselves come up with. An out-of-network approval is no better than a denial.

All PPOs are essentially the same as HMOs. You can go wherever you want, and go broke doing it.

Networks are the mechanism by which insurance companies control what treatments they will pay for, how much they will pay for them, and who we may go to for these treatments. What effect forty years of "networks" has on the quality of medical care?

I just won appeal #71, for a 34-year-old man named Brandon. He has a two-year-old son, and a baby on the way. Brandon had the same cancer that I did -- late-stage, metastasized appendix cancer. He needed to get to Dr. Sugarbaker in Washington, D.C.

Dr. Sugarbaker saw Brandon on Friday, it was decided that he couldn't wait, and the surgery was scheduled for the following Wednesday -- five days later.

Why the hurry? Because of what Brandon's in-network surgeon had been doing to him for four years ...

The worst bad medical story

I ask each of my helpees to write a three-page story of what happened to them since they first went to the doctor with symptoms. Names, dates. What they asked, what the doctor said, what the doctor did, how it turned out. I call this the Bad Medical Story.

During the process of discussing Brandon's story with him over the phone, I realized in one moment that this was the most shocking story of all of my seventy-one appeals. Nobody knew how bad this story was, until I interviewed Brandon about his story on Saturday morning.

I was asking questions, and Brandon was looking at his medical records. He said, "Oh, I found a pathology report." I asked him to read it to me. The report stated clearly -- in six different ways -- that Brandon had a low-grade appendiceal malignancy, with a serious risk of metastasis.

Brandon was first told that he had cancer in January 2011. I assumed that the report would be from 2011.

"The report is dated 5/2/07," he replied. The report concluded: "This report was delivered to Dr. Anderson* on 5/2/07." Brandon didn't make the connection until I said, "Brandon ... your doctor knew that you had cancer in 2007." The silence was so great ... I could hear my own heart beating.

Brandon's four-year saga passed before me: Appendectomy in April 2007. Visit to Dr. Anderson a few weeks later to hear the results of the pathology report. Dr. Anderson saying, "The report is inconclusive. Don't worry about it."

Brandon returns to Dr. Anderson many times over the next four years -- complaining of pain in the lower abdomen, bloating, nausea. Dr. Anderson tells him that he has acid reflux, prescribes Prilosec, and says, "Come back and see me in a year." Six months later, Brandon comes back in with worse pain. Dr. Anderson says, "You have gall bladder trouble, but you don't have enough pain to justify removing it. Come back and see me in six months."

And so on, until January of 2011, when Dr. Anderson finally agrees to remove Brandon's gall bladder. He comes to the hospital room after the surgery, and says, "You have tumors. You have cancer. But don't worry, it can be taken care of. I asked some people, and we have to get you to Dr. Sugarbaker. He is the only one who gets good results with these advanced cases."

The insurance company proceeded to deny the referral to Dr. Sugarbaker ... because he is out of network.

Making them pay

The Bad Medical Story was the star of this appeal. I called that section, "Cancer diagnosis concealed for four years."

I also proved that the in-network surgeon who they would compel him to see had no qualifications, experience, or training in the complex surgery which was at issue. Further, this in-network surgeon was not offering the same surgery or heated intraperitoneal chemotherapy as Dr. Sugarbaker. I dug up a newspaper article from 2006, announcing that Dr. In-network had just performed this exciting new treatment on three patients. Guess what I found, when I went looking for them? Obituaries. All three patients had died within six months of their surgeries with Dr. In-Network.

I wrote the appeal over the weekend. Late Sunday night, I faxed and emailed it to all of the top executives of the insurance company. By Tuesday at 11:00 a.m., the insurer had signed a single-case agreement with Dr. Sugarbaker's office.

Brandon had his surgery on Thursday. Dr. Sugarbaker was able to remove all of the cancer, and he is doing very well.

All networks must go

Some of the finest physicians with the very best outcomes have dropped their contracts with insurance companies. The first one to go is always Blue Cross Blue Shield. Why? Because Blue Cross Blue Shield's reimbursement is the most insultingly low, and they have the most paperwork. What good is your network, if the one surgeon who can remove your child's brain tumor is not in it?

I have heard of doctors being fined or reprimanded by the insurance company for referring patients out-of-network. What kind of a system is it that tolerates and protects bad medical care, and denies extraordinary medical care?

It is a system that ignores evidence-based medicine -- while pretending to practice it. A system that has no investment in good outcomes for patients. In what universe is it OK to wait four years to treat a cancer, then to deny the one treatment, then to deny the one treatment that could save his life?

Brandon's story is happening right now, in your town. Today, primary care physicians will be referrring more patients to Dr. Anderson -- because he is the in-network surgeon on their list.

I was referred to an unqualified and inexperienced surgeon six years ago here in Seattle -- because he was contracted with the insurance company. He stopped performing these complex abdominal surgeries in 2008, because he "wasn't happy with his mortality rate." He started doing them again six months later, because there was nobody else in the network to do it. How easily I could have been one of his casualties.

These networks are all about abuse and deception. The only ones who benefit from "networks" are insurance companies. If I had my way, I would forget the 1,000-page healthcare bills, and abolish all networks tomorrow.

Peaceful but passionate Insurance Warrior-ing,

Laurie Todd
health insurance help
"Harrison" - info (at)
Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
Old 04-27-2011, 08:43 PM
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Default AHRQ: No agency, no research, no quality

The Insurance Intelligencer

The Agency for Healthcare Research and Quality: No agency, no research, no quality

Insurance company words always mean the opposite of what they appear to mean:

"Blue Cross and Blue Shield" is not on a sacred (cross) mission to protect (shield) us from danger.

"Reasonable and customary" reimubursement is "unreasonable and unusual."

The job of the "Rapid Response Resolution Team" is to never under any circumstances call you back.

We are going to see what happens when government words join with insurance company words -- for the sole purpose of denying your treatment. Hang onto your pocketbooks, it's a wild ride ...


AHRQ: What is it?

I was studying Anthem's Medical Policy Statement for bioimpedence spectroscopy the other day.

The policy declared this test "experimental." I went directly to the "Government and other agencies" section, to see which groups they used to justify their negative policy. I was expecting to find one of the usual questionable suspects there -- Hayes (a private company), NCCN (a private company), NICE (guidelines from the UK).

I only found one entity who is supposedly "against" this medical test: The Agency for Healthcare Research and Quality. My first thought was, as always, "Who are these people?" They sounded like a government entity. Were they?

It took me about ten minutes to discover that "AHRQ" means the opposite of what it appears to mean:

Agency: The guidelines put out by this supposed impartial "agency" are written by private companies -- with no government oversight.

Research: No research is done by the AHRQ. They simply use information from private, for-profit companies.

Quality: The AHRQ could not possibly judge the quality of treatments -- because they have no measure for what "quality" is.

The AHRQ goes to great lengths to paint themselves as a busy beehive of activity. We imagine the world's best medical researchers, studying all manner of treatments in gleaming laboratories, and giving their expert, unbiased opinions on which treatments your insurance company needs to pay for.

Guess what? There are no scientists, there are no laboratories, there is no research. The Agency for Healthcare Research and Quality does not DO anything.

The EPCs: Who are they?

There are many private guidelines companies who cater to insurance companies -- Hayes Technology Assessments, NCCN Guidelines, Milliman Guidelines, and so on. I have read a number of these guidelines; I have never found one that had any scientific validity. These companies exist to provide insurance companies and other payors with documents which help justify treatment denials. Their names sound official, and most people never actually read the guidelines, to see if there is any real substance to them.

However ... a few of us out here are getting hip to the obvious bias -- and lack of real science -- in these guidelines.

This is where the Agency for Healthcare Research and Quality comes in. The AHRQ functions like a money launderer. They take the same old private, biased sources of information, filter it through a nonexistent government entity -- and magically transform it into something that looks respectable, reliable, and impartial. Let's see how it works ...

If the AHRQ doesn't do the research -- then who does the research? The AHRQ has designated fourteen "Evidence-Based Practice Centers (EPCs)." The EPCs write the guidelines. Then, these privately produced guidelines are turned into "Evidence-Based Practice Guidelines."

"Evidence-based" is one of those insurance company words; it means the opposite of what it appears to mean. When you see a website slinging the phrase "evidence-based" around the way they do on this AHRQ website ... you know that somebody is trying a little too hard to convince you.

It has been my experience that anything called "evidence-based" by insurers really has no evidence behind it at all. Newsflash: Insurance companies are not practicing evidence-based medicine, they know that they are not practicing evidence-based medicine, and they are not concerned about whether or not you receive treatments for which there is any proof or evidence.

In my appeals, I provide a hundred times more evidence that the insurer could provide for many treatments which they routinely offer.

We have followed the thread from the ultra-official-looking AHRQ government website -- all the way to the EPCs. Who are these so-called Evidence-Based Practice Centers, the ones who provide all of the proof/evidence/research which decides which treatments our insurers will allow us to have? The first of the fourteen Evidence-Based Practice Centers is ...


Huh??? An insurance company gets to write guidelines that determine what treatments insurance companies will have to pay for? With a government agency acting as the go-between to make their pronouncements seem impartial, substantial, and acceptable? Since when is Blue Cross Blue Shield a "practice center"? The last time I checked, Blue Cross and Blue Shield was an insurance company -- not a medical center or research laboratory.

The government just put the fox in charge of the hen house. I thought that you might want to know.

Peaceful Insurance Warrior-ing,

Laurie Todd
health insurance help
"Harrison" - info (at)
Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
Old 05-26-2011, 08:20 PM
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The Insurance Intelligencer - 5/25/11

"Experimental -- for this particular patient"

What if your insurance company denied a lifesaving treatment because it was "experimental" for you, just you, and nobody else but you?

In the case of Patricia from New Jersey, that is exactly what happened.

The denial

Two weeks ago, I heard from Abbie in New Jersey. Her mother Patricia had been diagnosed with appendix cancer, and she needed the same treatment that I had six years ago -- cytoreductive surgery and heated intraperitoneal chemotherapy (HIPEC). Horizon BC/BS had denied the surgery as experimental. Not experimental in general, and not experimental for appendix cancer. Experimental for just this one patient.

Experimental for one patient, but OK for everyone else? Absurd.

Patricia has a sub-type of appendix cancer that is so rare that my expert surgeon has only seen twenty cases of it -- out of two thousand surgeries: adenocarcinoid with goblet cell or signet cell morphology.

The denial says:

This treatment has no proven benefit for the particular diagnosis or treatment of a patient's particular condition.

Not generally recognized by the medical community as safe or effective for the patient's particular diagnosis or treatment of the patient's particular condition.

I could hear the insurance company saying, "This patient has a really rare cell type. Let's call the treatment experimental for that particular cell type. She will never figure it out. There are so few patients with this cell type -- she will never find any studies or proof for that type in particular. Easy denial, slam dunk!"

Not that easy. I was about to immerse myself in the murky swamp of appendix cancer pathologies and terminology...

Is it appendix cancer?

Horizon BC/BS's medical policy statement for cytoreductive surgery and HIPEC says: "This treatment is medically necessary for pseudomyxoma peritonei. It is experimental for all other conditions."

In this denial, Horizon BC/BS exploits the great confusion surrounding the terminology used to describe appendix cancer. Even the experts don't agree on what the words mean.

Some use the term "pseudomyxoma peritonei" as an umbrella term, to cover all types of appendix cancer. Some use the term just to refer to the less aggressive forms of appendix cancer. And some use it just to refer to the mucin which is produced in great quantities in the less aggressive forms of appendix cancer.

How did I prove it?

Insurers don't care if we need a treatment. They do not care if our doctors believe that we need a treatment. They don't care if it is a tried and proven treatment, or if it is the only treatment that will save our lives.

There is only one question that insurers care about, when deciding whether or not to pay for a treatment: "Are we required to pay for this, under the terms of your contract?" This is the only question that matters, and we must prove the answer with every word in our appeal.

In this case, how did I prove that they would have to pay?

This particular cell type -- adenocarcinoid with goblet cells -- is a sub-type of the group of mucinous appendiceal cancers called "pseudomyxoma peritonei." The two leading experts on appendix cancer -- Dr. Ronnett at Johns Hopkins, and Dr. Paul Sugarbaker -- agree on this.

Horizon's medical policy #0035 specifically approves this treatment for pseudomyxoma peritonei.

Horizon's medical policy #0035 does not mention this patient's cell type. This medical policy does not state that "this treatment is experimental for adenocarcinoid with goblet and signet cells." It does not mention her cell type at all.

Horizon BC/BS has paid for this treatment for a patient with adenocarcinoid with goblet cells before. I give the patient's name, name of surgeon, and date of surgery.

Horizon BC/BS has approved this treatment seven times -- for all different cell types included under the umbrella term "pseudomyxoma peritonei." I give names and dates for the seven Horizon cases.

All major insurers approve this treatment for this particular cell type. I list eleven cases -- with names and dates -- where insurers have approved this surgery for patients with adenocarcinoid wth goblet cells.

All major insurers pay for all types of appendix cancer. I include my entire list of 115 cases where insurers have paid for all different cell types.

In their denial letter, Horizon invents a whole new definition of "experimental" ("for this particular patient"). I point out to Horizon that, when the contract is in place, they don't get to change the contract.

The reviewer on the denial letter is a family practice physician. I point out that he is not qualified to render an opinion on the treatment which is at issue.

The in-network doctors know nothing about this disease, nor do they know how to treat it. I prove this by telling the Bad Medical Story.

It took me thirty-eight pages to prove this case with facts. I faxed and emailed the appeal on Sunday night. Horizon BC/BS reversed their denial on Tuesday morning.

I have to get up earlier and earlier in the morning, in order to outsmart these insurance companies. I can do it ... but how many others can do it?

How many patients who are suddenly diagnosed with a late-stage cancer -- and whose surgery is denied -- would ever be able to sort out the fine points of pathology, and be able to argue them in an insurance appeal?

(Picture: Mom Patricia is on the left, daughter Abbie in black.
Patricia had her surgery with Dr. Richard Alexander in Baltimore)

It is time for insurance companies to be held accountable for their decisions. There is a bill which has been written in California which will do just that. This bill could change the balance of power between patients, doctors, and the huge monopolies which are modern-day insurance companies. About this bill, more will soon be revealed ...

Happy and Peaceful Insurance Warrior-ing,

Laurie Todd
health insurance help
"Harrison" - info (at)
Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
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