It was four years ago today that I received a phone call from a Los Angeles TV reporter that would change my life, although I certainly didn't realize it at the time.
The reporter said she had been told that CIGNA, the big health insurer I worked for back then, was refusing to pay for a liver transplant for a 17-year-old girl, even though her doctors at UCLA believed it would save her life and her family's policy covered transplants.
I didn't pay much attention to the call at first because, as chief spokesman for the company, I had received many calls over the years from reporters seeking comment about benefit denials. We took them seriously, but usually didn't have to do more than tell the inquiring reporters we couldn't comment substantively because of patient confidentiality restrictions. If pressed, we'd email a statement to the reporter briefly noting that we covered procedures deemed medically necessary and that patients and their doctors could appeal a denial if they disagreed with a coverage decision.
More often than not, the reporter would either drop it or do a piece that was quickly forgotten and would largely go unnoticed outside of the local media market. I assumed the call from LA would be no different.
I couldn't have been more wrong.
Nataline Sarkisyan had been diagnosed with leukemia just weeks before her 14th birthday in 2004. Initial treatments were successful and the cancer went into remission. It came back two years later, however, and this time was more difficult to treat. She eventually had to have a bone marrow transplant, which CIGNA covered, but there were complications that damaged her liver. Her doctors felt, however, that she had better than a 60 percent chance of surviving five years or longer if she had a transplant.
Nataline's parents didn't realize it but, even though their policy covered transplants, her doctors had to get what is referred to in the insurance business as "prior approval" before going forward with the surgery. This means they essentially have to convince the insurer that the procedure is medically necessary -- and appropriate.
Anyone who believes that American doctors call the shots when it comes to providing medical care for their insured patients is sadly mistaken. Many folks, like Nataline's parents, are stunned to discover -- when they are helpless to do anything about it -- that insurance companies essentially have the power to make what amount to life and death decisions.
The doctors at UCLA hadn't clued Grigor and Hilda Sarkisyan in on the role that CIGNA would play in determining their daughter's fate. They hadn't felt the need to because they had performed many such transplants in the past and felt CIGNA would take their word for it -- along with the requisite documentation -- that Nataline was an appropriate candidate. A perfect match of a liver had been located, and Nataline was to be the lucky recipient.
Hilda was so confident Nataline would get the life-saving liver transplant that she arrived at the hospital wearing Christmas red to brighten Nataline's spirits. Christmas was Nataline's favorite holiday, and the transplant was going to be the best gift she would probably ever receive.
When Grigor and Hilda got to the hospital, however, the doctors took them aside and said they had had to cancel the surgery because CIGNA hadn't given them "clearance."
"What are you talking about?" Hilda told me later she asked the doctors. "What kind of clearance do you need?"
The doctors said they felt they could persuade CIGNA to give the needed "clearance" if they provided additional documentation about Nataline's health and suitability for the transplant. They were wrong. A CIGNA medical director 2,500 miles away said he did not agree with Nataline's doctors and felt the transplant would not be appropriate, that her chances of survival, in his opinion, were not as great as her treating physicians believed.
The Sarkisyans decided to try to shame CIGNA into covering the transplant and enlisted the support of the California Nurses Association and friends in the Los Angeles Armenian community. They were able to generate media interest in the case far beyond anything I had ever experienced before. That call from the LA TV reporter was the first of hundreds my staff and I would ultimately receive over the next few days.
The pressure worked. CIGNA agreed to cover the transplant at an estimated cost of $250,000 on December 20, 2007. Grigor and Hilda and their friends and families were overjoyed.
The Christmas joy was short-lived, however. So much time had passed since the original request was made that Nataline's health deteriorated to the point that she was no longer eligible for the transplant. She passed away just hours after CIGNA told the Sarkisyans it would pay for it. Five days before Christmas. When Nataline died, so did any desire I had to continue as a spokesman for the insurance industry. It certainly was not the only reason I left my job, but it was the final straw. I simply didn't have it in me to handle the PR around another case like Nataline's.
I was inspired to write about what happened four years ago when I received an email from a friend of the Sarkisyan family who I have come to know in recent years, Donna Smith, a spokesperson for National Nurses United, an advocacy group.
"On this anniversary," Donna wrote, "Nataline's mom will be as she has been for the past four years on December 20th -- quiet and alone with her thoughts and her memories.
"But in the fashion that has become Hilda Sarkisyan's style since then, she will turn tragedy into action again just two days prior to that anniversary. We can all help with that. We can use these moments to pause with the Sarkisyan family and remember why we all fight against corporate greed, and we can help."
Donna was writing to tell me that the Nataline Sarkisyan Foundation will be hosting a toy drive benefiting Children's Hospital Los Angeles this coming Sunday, December 18.
Hilda Sarkisyan was quoted in Donna's email as saying that, "Putting a smile on a child's little face who is suffering with all kinds of illnesses during this holiday season is what would make Nataline proud. With the support of our family, friends and community, we have collected hundreds of toys. We look forward to helping make hundreds of children smile."
If you can't attend the event in person but would like to donate a toy in Nataline's memory, go to natalinesarkisyan.com.
Thank you, Grigor and Hilda. And thank you, Nataline.
Follow Wendell Potter on Twitter: www.twitter.com/wendellpotter
With private insurance companies, they have nameless individuals, responsible for the company's profits and not accountable to any reasonable third party or rule set, making life and death decisions all the time.
CIGNA, and the unnamed individuals, decided their profits were more important than Nataline's life.
All so David Cordani and William Atwell can ride in better Gulfstreams.
Through all the hoopla and hyperbole leading up to the AHCA, its opponents would have the rest of us believe that rationed care and death panels were a sure certainty with its passage, when in truth both were already alive and well inside the walls of every insurer in this country. People didn't - and still don't - understand that if their health insurer rejected a brand name drug and approved its generic or over the counter equivalent, they became at that moment a victim of rationed care. Extrapolate that practice, and you have alive and functioning death panels, of which Nataline was a victim. Because these opponents have never seen it happen, they wrongly deduce it doesn't exist. And they are incorrect.
Measured, reasonable changes to the health care delivery in this country is what is needed to eliminate waste and fraud, and provide the best care for the most people. What we don't need is selective memory, willful ignorance, and head-in-the-sand hyperbole proclaiming the coming of what has been well in place for a very long time.
But here's the most significant thing that Potter will never tell you. Had there been national health care, this girl would have still never gotten the liver transplant. Governments are at least as callous as business if not more so. Witness the fact that the State of Oregon will not pay for Tarceva for stage IV Lung Cancer patients, but almost every private health insurance with a prescription drug benefit will cover most of the cost.
The media especially Fox and Clear Channel (radio,rush,beck,hannit...) have convinced all Republicans that "Obama Care" has "death panels" (Sarah Palin) when in fact our current private health insurance system is the one with "death panels".
Keep watching Fox,listening to Clear Channel and electing R,conservatives,libertarians and especially baggers and keep getting screwed.
Single payer universal health care now!
http://current.com/shows/vanguard/93534223_under-the-knife-abroad-vanguard-trailer.htm
Great link. This is more proof the Republicans own the media. Can you imagine the world we would be living in if the media was just center and not extreme crazy right. Your link proves beyond any doubt the media is insane right.
Thanks very much for the link.
I very, very rarely see a doctor. Once in a decade maybe. Every time they prescribe me pills I do not need and did not ask for. They are completely under the control of the pharma and insurance corporations. Shame on them.
How convenient.
I happened to watch an episode of Dr. Oz where he went to exploit poor people who were seeking help at a free clinic in LA. There were thousands and thousands who had not seen a doctor in years. He helped a few by humiliating them to expose themselves on TV and then went on to push his junk on people. And then he tried to convince people, that there is help for everybody. In which world is he living?
For two years now my wife has suffered from an inflamatory bowel disease.
The doctor ordered medication.
The insurance company refused it - saying use the over the counter medication.
A two year argument that the medication ordered by the doctor, at $135 a month, projected for a three month period, was to expensive.
Last week she had emergency surgery because of the results of the refusal to allow the medication.
Four days in hospital. Surgery, etc.
Congress, Obama, et. al. have pushed us to be dependent upon for-profit healthcare insurance companies that are de facto death panels and whose penny-wise, pound-foolish policies are driving the cost of healthcare up.
Americans need to wake up to the damage for-profit healthcare insurers are doing to us and our economy. And, the damage that Tea-Publican ideology is doing to us all.
http://www.cepr.net/index.php/publications/reports/taming-the-deficit/