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Wendell Potter

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Death Panels Real and Imagined

Posted: 07/07/11 09:08 AM ET

On behalf of Grigor and Hilda Sarkisyan, I would like to invite Republican Rep. Phil Gingrey of Georgia to attend the 21 st birthday celebration of the Sarkisyans' only daughter, Nataline, this coming Saturday, July 9, in Calabasas, Calif.

Gingrey could consider it a legitimate, reimbursable fact-finding mission. He clearly needs to have more facts about the U.S. health care system before he starts talking about death panels again.

Gingrey seems determined to keep alive the lie that the Affordable Care Act (a.k.a., Obamacare) will create government-run death panels in the Medicare program.

Sarah Palin started the death panel fabrication when she claimed during the health care reform debate that a proposal to allow Medicare to reimburse doctors for talking to their patients about advance directives would be tantamount to establishing death panels deep in the federal bureaucracy. So many people believed her lie that Democrats felt they had no choice but to strip that provision from the final bill.

Taking a page from Palin's playbook, Gingrey is now alleging, also falsely, that excising that provision didn't do the trick, that the bill signed by President Obama still creates death panels somewhere inside the federal government. He says a new board created by Congress to look for ways to reduce Medicare spending would have to operate those panels.

"Under this IPAB (Independent Payment Advisory Board)... that the Democrats put in Obamacare, where a bunch of bureaucrats decide whether you get care, such as continuing on dialysis or cancer chemotherapy, I guarantee you when you withdraw that the patient is going to die," Gingrey said recently. "It's rationing."

No, Congressman, that's not true. And I suspect you're well aware that the charter creating the board forbids it to ration care.

But, Congressman, death panels do exist in the United States, and Grigor and Hilda Sarkisyan, sadly, are in a position to explain to you exactly how they work and where you should be looking for them. You see, the real death panels that operate in this country are not run by a bunch of government bureaucrats but by a bunch of corporate bureaucrats who work deep inside U.S. insurance companies.

When Nataline was 14, she was diagnosed with leukemia. Initial treatments were successful and the cancer went into remission. It came back two years later, however, and this time the same treatments were not working. She underwent a bone marrow transplant, but it weakened her liver to the point that her doctors at UCLA Medical Center said she would need a liver transplant.

Her doctors were optimistic the transplant would save her life. In mid-December 2007, they told the family that Nataline would likely have a 65 percent chance of living at least five years if she had the transplant. Believing there would be no problem getting the family's insurer, CIGNA, to cover the cost of the surgery and after-care, the doctors scheduled the transplant as soon as a match became available.

But when Nataline's parents arrived at the hospital on the morning the transplant was to have been performed, one of the doctors took them aside to tell them that there was a problem. "CIGNA has not given us clearance," he said.

"What are you talking about?" Mrs. Sarkisyan said she asked the doctor, not understanding why CIGNA would have a say in the matter. "We have insurance, and I know it covers transplants, so what kind of clearance do you need?"

Nataline was covered under a policy that her father had obtained through his employer, Mercedes-Benz. As part of its contract with Mercedes, CIGNA assumed the responsibility of handling medical claims and making decisions as to whether or not to pay for expensive procedures like transplants.

The decision not to cover Nataline's transplant was made by a CIGNA medical director 2,500 hundred miles away in Pittsburgh. Although they are doctors, medical directors are corporate employees just as I was when I worked in the insurance industry. One of the responsibilities of these employees is to do their part to assure that their companies' are constantly meeting Wall Street's earnings expectations.

After receiving the initial denial from CIGNA, Nataline's doctors quickly faxed additional information to bolster their case, but the medical director continued to refuse to authorize payment for the transplant. UCLA told the Sarkisyans that if they could make a $70,000 down payment right away, the transplant team could proceed with the surgery. But the family didn't have that kind of cash. So they decided to try to shame CIGNA into paying for the transplant.

They enlisted the support of the California Nurses Association and friends in the Los Angeles-area Armenian community to help them stage a protest in front of CIGNA's regional headquarters in Glendale. They also reached out to the media about Nataline's plight.
It worked.

As head of corporate communications at CIGNA, I was on the hot seat trying to explain the company's point of view. I told reporters that transplant experts whose opinion the company had sought as external reviewers backed the medical director's decision not to pay for the transplant. They agreed with him that, despite what Nataline's doctors said, the transplant would be "experimental."

That didn't quell the media storm. Seeking to end the bad publicity as soon as possible, CIGNA agreed to pay for the transplant on December 20, 2007.

Unfortunately, the decision came too late. So much time had passed since the original request for coverage had been made that Nataline's other organs had begun to shut down. She died just hours later.

I had helped handle a lot of what we called "horror stories" during my 20 years in the industry. When Nataline died, I didn't have it in me to handle any more of them. I left my job a few months later.

In 2008, to keep her memory alive, Nataline's family and friends began hosting a "Fashion Legacy" on what would have been Nataline's 18 th birthday, July 10. Nataline wanted to be a fashion designer. Had she lived, she might have graduated this spring from the Fashion Institute of Design and Marketing in Los Angeles. Nataline was looking forward to enrolling there after high school.  

After Nataline's death, her mother found several design sketches Nataline had drawn but never shown anyone. The highlight of every Fashion Legacy is when the last model walks down the makeshift runway set up inside the Calabasas Mercedes Benz dealership where Mr. Sarkisyan works -- wearing one of Nataline's designs. Beverly Hills designer Pol Atteu brings one of Nataline's designs to life every year.

The Fashion Legacy is a fundraiser for three scholarships in Nataline's name -- in medicine, fashion design and the culinary arts.

I know from having attended last year's Fashion Legacy that Hilda and Grigor Sarkisyan and Nataline's brother, Peter, are always busy with last minute details before every show, but I also know they would gladly take time to talk with Rep. Gingrey about real and imagined death panels. They know all too well about the real death panels inside insurance companies, where life and death decisions are made every day by corporate "bureaucrats," people who will never face real patients and their families.  

So, please, Rep, Gingrey, consider taking the Sarkisyans up on their offer to meet with you face to face. If you can't make it, I know the Sarkisyans would be quite willing to meet with you at your convenience. You just name the time and place.

(For more information about Nataline's Fashion Legacy or to contribute to the scholarship fund, go to www.natalinesarkisyan.com.)

 
 
 

Follow Wendell Potter on Twitter: www.twitter.com/wendellpotter

 
 
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HUFFPOST SUPER USER
1Truthseeker
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01:37 PM on 07/27/2011
Thank you Mr Potter for your ongoing reporting on the facts, as former insurance executive. The very structure of our Health Care system is designed as a for profit system. In any for profit system cost of services and products are driven by the ratio of supply and demand, usually through market manipulation and has nothing to do with actual production costs. Even when we look at something as basic as paper towels, the retail price is determined by what the market will bear rather than a production cost + profit formula. This allows for products to be marked up as high as a 1000% of production cost. Retailers can afford to hold 75% - 90% off sales because they are still making a profit, because even @ that reduced price their costs and income are covered.

Medicare costs cannot effectively be contained within a for-profit health care framework. The only effective approach demonstrated by countries with the healthiest populations, Scandinavia, Germany, France, England, Canada and Japan is that they all have a Single Payer Universal Health Care system. In each country individuals still have the option to purchase supplemental insurance for things like "private" hospital accommodations, cosmetic or elective surgery of any kind. But every inhabitant of these countries pays into the system once they begin to work. The quality of care that I have received while living and working in several of these countries was far superior to what I have received in the US.
05:13 PM on 07/11/2011
agreed that corporate "death panels" already exist and have existed ever since decisions were made to cover treatment based on actuarial tables, etc

howevere that does not mean that the IPAB is some benign concept; its function is, at its core, to decrease/deny payments to physicians for services they provide, at a time when Medicare reimbursements are at an all-time low and costs of operating a medical practice are at an all-time high. The SGR formula goes on addressed. This would be adding fuel to the fire of an unsustainable situation.

The inevitable result will be docs who can no longer afford to see Medicare patients. There will be 30 million more people who believe they are now covered with medical insurance, but in reality it will be just as valuable as "Monopoly" money.

Pass the doc fix. Repeal the SGR. Abolish the IPAB.
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HUFFPOST PUNDIT
StJames
In absentia luci tenebrae vincunt
12:43 PM on 07/27/2011
Horse feathers...My late fiance had  a doctor who only takes Medicare patients...He flies his own plane and lives in a community where every home has it's own runway and hangar...This is south FL not the Australian Outback....There's an old Ukrainian saying about people "crying poverty while carrying a loaf of bread under each arm."  When was the last time you saw a doctor driving a Chevy?
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1Truthseeker
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01:38 PM on 07/27/2011
"The answer my friend is blowing in the wind": Single Payer Universal Health Care were the shareholders are cut out.
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jstrate
03:30 PM on 07/07/2011
This article gets to the heart of the debate about medical care and cost containment. Private sector or public sector, there is going to be one form or another of rationing, like it or not. The issues are the form that rationing should take and who, if anybody, should be empowered to make decisions that ration care. In this country, we like to think that medicine can do everything for everyone always. It can't.
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Anne Rutherford
03:26 PM on 07/07/2011
Th entire point of this is to have a rational discussion about these issues. Profitability should not be a part of the equation. Best practices, expected outcome, all these things are essential in the equation. We need to educate patients and providers about quantity and quality of life issues and empower them to work together to provide best practice in the situation. For a stage four cancer patient, this may mean palliative care and support. For someone with MS, it could mean figuring out the best drugs to use to prevent exacerbations and access to physical therapy to retain motion and the benefits of exercise. Mr. Potter's point is that profitibaility for investors should not be part of the equation for denial of care. In many instances insurance companies call something "experimental" when the prodcdure has been used successfully for a number of years.
02:41 PM on 07/07/2011
Interesting comments across the board right now, I'm surprised by the number of ppl considering money in the equation. I'll assume that those who suggest that the money should be considered in this situation have never watched their only daughter die before them.
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1Truthseeker
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01:47 PM on 07/27/2011
For Profit Health Care models are the real death panels! In the US we have 40 million uninsured.
My dear friend who was a very skilled carpenter was self employed all his life. His work day was never less than 10 hours. He bought a "skeleton coverage health policy" because that is all that he could afford. At the age of 52 he was diagnosed with Prostate cancer. That was two years ago. The treatment options available to him under his policy were very narrow and thus very limited. Within a year the cancer spread to the bones. He was prohibited from changing to a more comprehensive policy because of his"pre-existing" condition. By Memorial day of this year the medical liens against his home threatened to leave his family in debt, so my friend took his life.
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Ice9
AZ: We're assumed guilty until proven innocent.
01:52 PM on 07/07/2011
Excellent post, as usual. Perhaps by publishing these horror stories you can awaken people to the reality of the medical system they so staunchly defend today. Your personal connection to the story makes it all the more poingnant.
01:44 PM on 07/07/2011
There could be government death panels (although Obama certainly has never proposed them) and there are certainly corporate death panels. Government is not inherently good or bad, nor is business, but unaccountable concentrations of power are always potentially dangerous. Ideally a government designed to be responsive to an informed citizenry's will counterbalances excesses in other parts of society. We are letting control get away from us on both fronts.
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PRR Fan
8 year-olds, dude.....
01:27 PM on 07/07/2011
This story might have more legitimacy were it not for the fact that Medicaid/care are the biggest deniers of claims out there.
03:11 PM on 07/07/2011
Would Medicade/Medicare have denied treatment to this girl? They may be one of the biggest deniers of care, but is that because they actually deny crucial medical care or is it because they deny less important types of medical care?
VA Jill
Retired RN, Army mom. Bring the troops home!
04:48 PM on 07/07/2011
Your evidence?
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PRR Fan
8 year-olds, dude.....
08:07 AM on 07/08/2011
http://www.ama-assn.org/resources/doc/psa/2011-nhirc-comparison.pdf

This link is the 2011 American Medical Association National Health Insurance Report Card. Check out Metric 12 on page 7. Over the last 4 years, Medicare has a higher rate of claims denial than the private sector average and is second in terms of claims denial for 2011.
HUFFPOST SUPER USER
Damiano Iocovozzi MSN NP
01:25 PM on 07/07/2011
Very moving story, Mr. Potter. Yes, death panels do exist: they are poverty, ignorance, losing one's job, home & health insurance. The symbolic death panels are also indifference to the suffering of others: the plight of 60 million uninsured people with little resources to combat real pathology. As a provider, I cannot get hospice nurses to call on a dying patient at home with no insurance & no money to pay in this county. I often cannot get a diagnostic mammogram for an uninsured woman's suspicious breast lump if she's no money to pay. Here it is overtreatment for those who have insurance & money to pay, often to the point of hideous medical futility & therapeutic obstinacy as that's the only place to make money these days: the last 6 months of life. Billions are spent with no honest medical goal on such futility. Then there's undertreatment for those who are underinsured, with no money to spare for better meds & treatments. At least in Charles Dickens' time, there were poorhouses. Now it's just the street or an earlier grave. We need to lose the fee for service scheme as it invites waste, fraud & abuse and is rife with conflicts of interest. We need to lose the insurance carrier middlemen & get a single payer scheme like the rest of the developed world. We pay the most, yet rank usually at 37 or higher, often past Turkey in health care outcomes. Visit me at http://www.soonerorlaterbook.com for more about
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01:53 PM on 07/27/2011
Thank you for your comprehensive comment and the link. Profit should have no place in Health Care! The leading cause of bankruptcy in our country are exorbitant health care costs. The only humane and compassionate response of any society to it's members is Single Payer Universal Health Care.
01:21 PM on 07/07/2011
What a tragic story. Who can possibly read this and think our system works?? Wendell, I have posted this to http://healthinsurancehell.com/ to help spread the word.
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HUFFPOST BLOGGER
Wendell Potter
Analyst at the Center for Public Integrity, author
05:43 PM on 07/07/2011
Many thanks for spreading the word.
11:10 PM on 07/26/2011
Mr. Potter. You are among a list of people our family treasures. We are so thankful for your honesty and courage. We appreciate your perseverance and your civility. Thank you.
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StJames
In absentia luci tenebrae vincunt
12:44 PM on 07/27/2011
Mr. Potter thank you for your honesty and courage.  You have been speaking out against these abuses for a while now and I for one deeply appreciate your efforts.
01:08 PM on 07/07/2011
According to the news story I read on this situation it was a 65% chance that the girl would live even 6 months. As much as some want to go after the insurance company here the same decision would likely have been made in other systems by government bureaucrats. One of the main arguments against our current system is how much money we spend in the last 6 months of life. Well "saving" money in that way means saying no in more situations.
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Ice9
AZ: We're assumed guilty until proven innocent.
01:55 PM on 07/07/2011
It's one thing to deliberate on the long term viability of a liver transplant to a 90 year old. But another thing entirely when the patient is 17.

This was not an "experimental" procedure, that was just an excuse by the insurer to delay & deny the transplant. What did they think would be the eventual outcome? She had as much of a chance of growing a new liver as you have of growing a heart.
12:43 PM on 07/07/2011
Stories like the one presented here are heart wrenching. Though the author presents it in a vacuum. Like there is someway that we can afford to provide ridiculously expensive treatments to everyone with any chance to live. Doctors are usually going to be overly optimistic on the chances of a treatment succeeding. If the girls body got that much worse that fast then likely she was in much worse shape than they realized.

The author prefers "single payer" systems. Those systems are going to have the same types of costs controls. Someone is going to have to make decisions on what to pay for and what not to pay for. Frankly I don't necessarily trust someone from the government more than someone from an insurance company. With the insurance company at least they have the threat of someone suing them after the fact. When the government tells you no what do you do? If you look at survival rates for cancer our system is better. So while not everyone is saved in any country more are saved in ours. Kind of the opposite of what the author is trying to put forth.
maruski
Liberal Lutheran; lean left, save America!
02:37 PM on 07/07/2011
No more are not saved in our country.. The rate of cancer cure is the same as it has been for decades---on the other hand we treat non life threatening cancers more often than other countries do and that makes our numbers look better--breast cancer specifically
http://www.cbsnews.com/stories/2009/07/10/health/main5148691.shtml

so we often "cure" cancer that never was a problem to begin with--ie never was going to kill the person

sure does make you stats look good though
03:24 PM on 07/07/2011
I would say that those conclusions aren't really what the study tells us. Lets say that breat cancer is over diagnosed. Your piece showed it was over diagnosed everywhere. So US rates which are better would still be better. Survivor rates for breast cancer in its early stages are 98%. So even if 40% of those diagnosed would be fine without treatment then the survivor rate of those needing treatment is 96.7%. The number of women being diagnosed with breast cancer has been pretty flat for 25 years. If you go back farther than that then the rate has climbed some. Though people are living a little longer and over 40% of the women who are diagnosed with breast cancer are over 65.
04:17 PM on 07/07/2011
I don´t agree. In the European public health system where I live , the medical authorities do everything that they ca to save your life and do the most for you - there are practically no limits.

What you mention is the tactic of spreading the blame so that all health systems appear to be equal. No they are not - the for-profit U.S. system rations health care a lot more than the European public one.
12:36 PM on 07/07/2011
The canard on "Death Panels" came from the Christian Republican Tea Party Birther movement to be used to scare old people and negate "Living Wills!" When these people take complete control over the government, they will enforce the Terri Schiavo end of life decision in the George Bush signed legislation.

The longer they can keep old people alive, the more money the nursing homes can profit from Medicaid.
I have visited a nursing home almost everyday for the past twenty months and I have seen this first hand. Republicans really have no concern for the suffering forced fed old people.
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02:13 PM on 07/27/2011
The drafting of ones Living Will is the only Adult and Responsible way to prepare for the unforeseen.

Those who do not take this step, push the burden of their irresponsibility onto others. My father had a living will. When he was very ill I realized how very loving it was of him to do that. It made navigating through all the decisions and choices that needed to be made much more manageable. As a family he gave us clarity as to where he wanted the line to be draw.
12:20 PM on 07/07/2011
Exactly why insurance companies should be nonprofit only, and their CEO's salaries subject to legal limits. Outrageous.
maruski
Liberal Lutheran; lean left, save America!
02:47 PM on 07/07/2011
If you watch the "sick around the world" frontline special some other countries have enacted non profit status for their insurance companies and it is working.

I don't see why American can't solve its problems this way as well. It's just obvious when you take 20% of the healthcare premium and give it to the corporate machine --CEO bonuses, dvidends--that those dollars are NOT NOT, I repeat NOT for healthcare

those dollars are simply someone who is profiting on someone elses need for medical care.

That is one out of 5 dollars. I don't know about you but I'd gladly pay a 20% lower premium to a non profit---even Medicare-- for my plan
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02:19 PM on 07/27/2011
Universal Single Payer Health Care is the most responsible and compassionate form for a national Health System. The current corporations who in certain States have to form a non-profit arm in order to participate in Medicaid have been demonstrated to abuse the system with enormous CEO benefit packages and the buildup of hundreds of millions of tax dollar reserves that they should be returning to the State government. There is a reserve requirement for them but they exceed that threshold by tens of millions of tax dollars.
11:14 PM on 07/26/2011
Hey, our non-profit Blue Cross Blue Shield here in NC can be pretty obnoxious about practices too....I find it offensive that they can pretend to be a non-profit and act so much like a corporation with their priorities. I support our state Museum of History but am pretty disgusted that Blue Cross Blue Shield provided over $250,000 as a "contribution"....go cure somebody why don't they....instead of having their CEO and minions sitting on the dias and in the spotlight. We don't need the kind of interlopers in our health care system. Go make profits elsewhere and get a soul already.
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11:42 AM on 07/07/2011
Thanks, Mr. Potter.

Who know what Nataline or her descendants could have accomplished ?

Their contributions are lost because of greed, which used to be one of the Seven Deadly Sins.

We have TRILLIONS to spend on wars, but we must cut back on spending on people and infrastructure.
12:59 PM on 07/07/2011
Read the story. She had leukemia that was treated and came back. She then had to have a bone marrow transplant which weakened her liver. Livers don't grow on trees they are limited. So someone made a decision somewhere and somebody else ended up ultimately getting that liver. Why? They were considered a better risk than someone with leukemia that may or may not be controlled. Was it the right decisions? Nobody knows even after the fact. Those making those decisions could only go with the information that they knew at the time. Do we trust someone in government making those types of decisions? The insurance company could face a law suit so they have more of a reason to treat it than the government would.
04:21 PM on 07/07/2011
In Europe no one "in government" makes any decisions about your health or your life. I have been through it myself.
What you are talking about is a hypothetical situation in which all people, in public or private health care, behave to the same standarts of greed that you imagine for everyone.
VA Jill
Retired RN, Army mom. Bring the troops home!
04:51 PM on 07/07/2011
Are you aware that the liver regenerates itself? That is, you can give a person a PART of a liver from a donor, even a live one, and it will grow to its full size. A live donor's liver will also replace the part of itself that was donated. So, although they don't grow on trees, they are not as limited as you seem to think.