Health: Nataline Sarkisyan Update

Molly Hennessy-Fiske writes in the L.A. Times that Nataline Sarkisyan had a successful bone marrow transplant on Nov. 21, and subsequently developed complications that required hospitalization in the ICU.

On Dec. 6, Nataline's doctors put her on the liver transplant list and a liver became available four days later, according to Nataline's family. That would be December 10th. CIGNA proclaimed the liver transplant was an "experimental" treatment and refused to approve and pay for the procedure (according to Nataline's family). As a result, Nataline apparently was taken off the waiting list for a liver transplant.

According to emedicine, the liver is the second most commonly transplanted organ in the human body. The site states, in part:

the Pediatric End-Stage Liver Disease (PELD) scoring system [is used when a recipient is] younger than 18 years.

* Status 1 (acute severe disease) is defined as a patient with only recent development of liver disease who is in the intensive care unit of the hospital with a life expectancy without a liver transplant of fewer than 7 days.

That would pretty much define Nataline Sarkisyan. Without a liver transplant she was certain to die. CIGNA knew that when they made the decision to refuse to pay for the transplant. Also, the second most commonly transplanted organ in the human body is hardly "experimental." Of course, the insurance companies apparently reserve the right to define experimental, a definition that they do not share with the public or with treating physicians and other medical professionals.

On December 11th, Nataline's own doctors told the family and Cigna that patients in Nataline's situation have a 65% chance of living at least six months with a liver transplant. They urged CIGNA to reconsider its decision.

On December 14th, another donor match was found for Nataline. CIGNA refused to approve payment, and Nataline's family could not come up with the $75,000 downpayment required for the surgery. Meanwhile, the California Nurses' Association joined with the Sarkisyan family and Armenian-Americans to protest CIGNA's heartless denial of coverage.

The L.A. Times article states:

The family's benefit plan does not cover experimental treatments. But this week, after receiving an appeal from the family and UCLA doctors, the company reconsidered.

Supposedly, a medical decision is based on fact, not emotion or pressure. Either the patient's benefit outweighs the cost of treatment, or not.

For example, had Nataline been 80 years or older, and on the transplant list with a less than 50 per cent likelihood of survival, her family might weep and wail till the cows came home, but the public would most likely not sympathize with them and the "experts" who evaluated her case would be supported by CIGNA and the public at large in refusing her a liver transplant.

But Nataline was only seventeen, and her doctors felt she had a better than 65 per cent chance of survival. So CIGNA knew what they were doing when they refused coverage. They were condemning her to death.

Arlys Stadum, a Cigna spokeswoman, said the insurer submits all transplant requests to physicians with transplant expertise for review. Every request that is refused has been seen by at least one expert physician, she said.

Having been seen by "expert physicians" working for insurance companies, we here at this fine establishment can testify that most of them appeared to be some decades past active practice. Their sole source of income appeared to be the insurance companies, and we're willing to bet that they were not being paid to render decisions that would cost the insurance companies money.

These people, some past the age of retirement, many having little knowledge of the newest information in their field, were being allowed to pass judgment on working medical practitioners who perform medical diagnostics and procedures in their field on a daily basis.

It's like asking your mother the retired librarian her opinion of the latest developments in information management when she hasn't worked in the field since you were born three decades ago. She might well know the theory, but you couldn't rely on her to implement an information management system without training and hands-on time. And nobody dies from mismanaged information.

Six days later at approximately 4:40 p.m. on December 20th, just as the family had decided to remove Nataline from life support, Cigna sent a letter to the family's attorney approving the transplant.

The letter, faxed to attorney Mark Geragos, is stamped 4:44 p.m. Geragos said his staff tried unsuccessfully to reach the Sarkisyans at the hospital. The family said they didn't see the letter until after they removed Nataline from life support at 5:20 p.m.

"They took my daughter away from me," Krikor Sarkisyan, 51, an automotive technician, said at the news conference outside Geragos' downtown L.A. office.

In the letter, Deborah Garnsey, a registered nurse who reviews cases for Cigna, said she had reviewed the family's appeal on Thursday and decided that day "to make an exception in this rare and unusual case."

She noted that the family's appeal was reviewed by an oncologist and liver specialist.

"We are making this decision on a one-time basis, based on the unusual circumstances of this matter, although the treatment, if provided, would be outside the scope of the plan's coverage and despite lack of medical evidence regarding the effectiveness of such treatment," Garnsey wrote.

Shouldn't the treating physicians, and UCLA's top-notch transplant team be the best judges of the medical evidence available, and what weight to accord to such evidence, Nurse Garnsey? How does it happen that a nurse - no matter how intelligent, able, and well-qualified - is empowered to overrule the medical decisions of two "specialists" in the field, two doctors, in "reconsidering" a decision? Also, what "unusual circumstances" are these? The fact that people protested? Does this mean that insurance companies have a policy of denying treatment unless people protest?

The article goes on to quote Dr. John Roberts, chief of the transplant service at UC San Francisco:

"The problem that they got into is, here's a situation where she didn't have very long to live," he said. "Probably in this situation, they're probably better off to say, 'The transplant center really feels like this is the right thing to do, let them go ahead.' "

Dr. Goran Klintmalm, chief of the Baylor Regional Transplant Institute in Dallas, said the operation that UCLA wanted to perform was a "very high-risk transplant" and "generally speaking, it is on the margins."

But Klintmalm said he would consider performing the same operation on a 17-year-old and believes the UCLA doctors are among the best in the world.

"The UCLA team is not a cowboy team," he said. "It's a team where they have some of the soundest minds in the industry who deliver judgment on appropriateness virtually every day."

Of course, when quoting insurance company spokespeople, the reporter fails to question their underlying bias.

Karen Ignagni, chief executive of America's Health Insurance Plans, an industry trade group, said that the case shows how few employers, and even individuals, want to pay for experimental care coverage when they buy insurance, but that when people find themselves in dire health, everyone wants it.

Ms. Ignagni, that's disingenuous, to be very charitable. It's clear that the second commonest organ transplant performed can't be judged to be "experimental." The article in emedicine states that 5,300 such transplants were performed in 2002. As the population ages, more and more people will find themselves needing organ transplants. It's the coming crisis in the healthcare system - a system that pays insurers to stand between sick people and their doctors is inherently unjust.

People realize this, which is why there is such a tremendous outpouring of anger over the very preventable death of Nataline Sarkisyan. Because Nataline is you and me and everyone else who needs health care and pays for health care and finds, at the end of the day, that to save a penny here and a dollar there, the insurance companies which have taken our money for twenty years are quite willing to let us die.

Caveat: The cited articles have been extensively snipped due to space limitations. To view the articles in their entirety, please click the links.

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