The case of a Northridge teenager taken off life support just as her insurance company reversed itself and agreed to pay for a liver transplant is highlighting tensions among physicians, patients and insurers over the definition of experimental procedures.
Nataline Sarkisyan's family blames their insurance company, Cigna HealthCare, for the teenager's death Thursday. A leukemia patient, 17-year-old Nataline had been in intensive care at UCLA Medical Center for about three weeks after suffering complications following a successful bone marrow transplant Nov. 21, relatives said. She was covered under the policy of her mother, a real estate agent.
Doctors treating Nataline told the family and Cigna in a letter that patients in similar situations have a 65% chance of living six months if they receive a liver transplant. Doctors had qualified Nataline for a transplant Dec. 6 and a liver became available four days later, the family said. But the transplant was not performed because Cigna had refused to approve and pay for the procedure, they said.
Cigna turned down the transplant, calling the procedure experimental because it was not supported by enough medical literature as safe or effective in such cases. 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.
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.
In explaining the reversal, she said, "It was really just looking at how complex the decision was." Stadum said she couldn't provide more details because the Sarkisyans had not given the company permission to discuss Nataline's case. Doctors at UCLA also refused to discuss the case without family permission , but other transplant physicians said doctors and the insurer faced a difficult call.
The family mobilized supporters with the help of local Armenian groups and Eve Gittelson, an online health policy writer known as "nyceve" whose dispatches appear on the influential Daily Kos blog.
On Friday, Nataline's father and brother held a news conference, lashing out at Cigna and giving their version of the events leading up to the teenager's death.
Nataline's father, Krikor Sarkisyan, said he was protesting with relatives and supporters outside Cigna's Glendale office Thursday afternoon when his sister phoned and summoned him to the hospital. Doctors said Nataline's condition had worsened, that she was not likely to recover and gave the family the option of removing her from life support.
About 4:40 p.m., just as Sarkisyan said 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.
Dr. John Roberts, chief of the transplant service at UC San Francisco, said Cigna faced a difficult decision in the case, based on the facts presented by the UCLA team.
Roberts said his center generally will not accept a patient without a 50% chance of living five years. According to UCLA's letter to Cigna, patients like Nataline had a 65% chance of living six months.
"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.' "
The standard of care for this particular situation is "going to be pretty hard to know," Roberts added. "I think it's a very difficult decision for both the transplant center and the insurance company."
Of the 1,107 patients under age 18 who received liver transplants nationally from Jan. 1, 2004 to June 30, 2006, nearly 92% survived at least one year. But most were not as ill as Nataline.
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."
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.
"We've been looking very seriously at this issue because [experimental coverage] is over and above what employers purchase," she said. "But individuals, when they are facing these extreme circumstances, want to have a place to go. They want solutions. We need to address this issue from a societal perspective."
Ignagni said her organization, which represents Cigna and other major health plans, is considering proposing that some sort of reinsurance program be created to cover certain experimental procedures.
The California Nurses Assn. publicized Nataline's case, calling it an illustration of the need to abandon private insurance coverage in favor of a single-payer plan.
"If Cigna could approve the transplant yesterday in response to hundreds of phone calls and people pounding on their door in Glendale, why couldn't they have done it eight days earlier?" said Charles Idelson, spokesman for the Oakland-based group.
Although it isn't clear that Cigna could have saved Nataline by approving the transplant earlier, Idelson said, the insurer should have trusted her doctors.
"The transplant was recommended by the medical professionals at the bedside," Idelson said. "They should have been listened to."
Nataline's mother said she believed that Cigna was just trying to save money. "They just like to collect," Hilda Sarkisyan said. "They don't want to deliver."
Times staff writers Charles Ornstein and Lisa Girion contributed to this report.