The Teenager Who Changed My Life

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.

Insurers Ration Life-or-Death Care

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 L.A. 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 they 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 natatalinesarkisyan.com.

Thank you, Grigor and Hilda.

And thank you, Nataline.