Nataline Could Have Been 28 Today If Not For A Health Insurance Decision

I’ve been asked many times if there was one thing, one moment, that led me to leave my job at a big health insurance corporation. Yes, there was, and it occurred five days before Christmas in 2007. That was when a beautiful 17-year-old girl named Nataline Sarkisyan passed away, days after the company I worked for refused to pay for a liver transplant that her doctors believed would save her life. A few days after Nataline’s death, I turned in my notice.

Nataline Could Have Been 28 Today If Not For A Health Insurance Decision

www.tarbell.org/2018/07/nataline-could-have-been-28-today-if-not-for-health-insurance-industry-death-panels/

By Wendell Potter

I’ve been asked many times if there was one thing, one moment, that led me to leave my job at a big health insurance corporation. Yes, there was, and it occurred five days before Christmas in 2007. That was when a beautiful 17-year-old girl named Nataline Sarkisyan passed away, days after the company I worked for refused to pay for a liver transplant that her doctors believed would save her life. A few days after Nataline’s death, I turned in my notice.

Nataline would have been 28 today and very likely would have been a fashion designer, which was her dream. In celebration of her life and birthday, Tarbell is reprinting the chapter I wrote about her in my first book, Deadly Spin, An Insurance Company Insider Speaks Out on How Corporate PR Is Killing Health Care and Deceiving Americans.

By the way, the Affordable Care Act did not address the issues that allowed a corporate medical director to overrule Nataline’s doctors and deny their request for coverage of the transplant. Her parents continue to fight for a health care system that doesn’t allow corporate executives to make life and death decisions.

Here is that chapter.

When she was a little girl, Nataline Sarkisyan loved to dance and sing and write poetry. She was a Girl Scout. She dreamed of growing up to be a fashion designer. She was also proud to be an Armenian American and the daughter of Grigor and Hilda Sarkisyan, who had immigrated here from Armenian communities in Lebanon and Syria when they were children.

The Sarkisyans sent Nataline to a private Armenian elementary school near their home in Los Angeles because they wanted to make sure their only daughter could speak their native language. And Nataline was so proud of her heritage that she spent part of every weekend at the Armenian Youth Federation teaching the language to other kids whose parents couldn’t afford to send them to her school.

Nataline was also very religious. She loved Bible school and was always praying for her family and her friends. Her mother said they used to pray together every night. “Just the two of us. We never missed a night.”

The first time I heard about Nataline was late on the Friday afternoon of December 14, 2007. I’d been traveling that day and hadn’t had a chance to check my voice mail messages. There were lots, as usual, and most of them were routine—except for one from a TV station in Los Angeles that stood out because it just didn’t make sense. The reporter said she’d been told that CIGNA was refusing to cover a liver transplant for a Los Angeles teenager because her family owned a second home. I replayed the message to be sure I’d heard it correctly.

I couldn’t imagine why anyone at CIGNA would care if a family had a second home and, even if they did, how it would have any bearing on whether or not to cover a transplant. Nevertheless, for the sole reason that a TV reporter had called about a CIGNA health-plan member, I gave the Nataline Sarkisyan case “high profile” status.

My staff and I took every call from reporters seriously, but we gave special attention to reporters working on “horror stories,” as I mentioned earlier. Typically, whenever any of us got such a call, we would arrange a conference call with senior managers, often including the chief medical officer, and sometimes even the CEO. This one didn’t seem to warrant such a call—at least not yet—but I telephoned my office to find out if any other reporters had called about it.

None had, but the same TV reporter had phoned again. I asked a colleague to call her back to try to get more information and, if necessary, to e-mail her a bland statement of some kind.

E-mail had become the most common way we communicated with reporters. It enabled us to click “send” and dispatch a statement that usually had been blessed (if not already written) by an ad hoc committee of lawyers, corporate doctors, and businesspeople. With e-mail, we were sending not just a statement but a broader message: “Here’s our response to your question. Take it or leave it. It’s all we’re going to say.” More often than not, reporters would take it and not bother us for more information. They were often on a deadline, and even if they weren’t, they knew from experience that they weren’t going to get much more out of us.

The statement we sent to the Los Angeles TV reporter didn’t acknowledge that Nataline was a CIGNA member, much less answer any specific questions about the alleged denial: “Due to federal privacy laws we are unable to confirm that this individual is a CIGNA member at this time. Cases such as this are not decided based on cost, but rather on the medical appropriateness of treatment. There is an appeals process in place whereby physicians who are not with CIGNA review a case and provide another viewpoint on the appropriateness of treatment. We always encourage our members and their physicians to make an appeal in situations where they disagree with a decision.”

We hoped that would be enough to kill the story, but it wasn’t. On Saturday evening, December 15, KTLA-TV aired a brief report about the case. “Members of a local family say they’re living a night-mare, and they blame their insurance company,” said the station’s anchor, introducing the first of what ultimately would be thousands of stories about CIGNA’s refusal to pay for Nataline’s liver transplant.

For the first time, I started paying close personal attention to the case. Not only did I not want CIGNA to get any more bad publicity, but I also couldn’t help thinking about the family. As the father of a daughter just three years older than Nataline, I couldn’t help putting myself in their shoes, wondering what life would be like for my wife and me if we were fighting with an insurance company to get it to cover a lifesaving transplant for our daughter, Emily. Just thinking about it caused me to ache. I tried to quickly put it out of my mind.

Nataline had been diagnosed with leukemia on May 28, 2004, just weeks before her fourteenth birthday. After a series of chemotherapy treatments, the leukemia was in remission. “She only had two treatments left by the time of her sweet-sixteen birthday party,” her mother said. A year later, though, just as she was getting ready to go to the hospital for routine blood work, she told Hilda, “I feel weird, Mom, like something is wrong with me.” Something was: Her leukemia had come back.

Nataline Sakisyan at her sixteenth birthday party | Credit: Nataline Sarkisyan Foundation

This time, her doctors said, chemotherapy wouldn’t be enough. She needed a bone marrow transplant, and it turned out that her older brother, Bedig, was a perfect match. He gladly agreed to be the donor, and CIGNA agreed to pay for it, as long as the procedure was done at a hospital in CIGNA’s network, Mattel Children’s Hospital at UCLA.

“We rushed to get Nataline admitted because timing is so important,” Hilda said. Nataline had to have the bone marrow transplant within a few days of a heavy dose of chemotherapy.

Although Nataline knew her leukemia was back, “you would never have thought she was even a little sick,” her mother said. “She walked into the hospital smiling, knowing she would go back home soon. She looked like she was in perfect health.”

It Was the Beginning… of the End

Nataline was admitted on Monday, November 12, 2007. Across the country in Philadelphia, I, too, was having a busy, stressful Monday, starting with an eight a.m. Public Policy Council meeting at which CIGNA’s lobbyists in Washington briefed my boss (general counsel Carol Ann Petren) and me on the latest talk on Capitol Hill and in the presidential campaigns about health care reform. Immediately after that, I met with one of the company’s securities lawyers about a Securities and Exchange Commission filing. At one p.m., I was off to the boardroom on the seventeenth floor for an important briefing on CIGNA’s Investor Day, which would be held the following Friday at the Mandarin Oriental Hotel in New York. Because the company expected Investor Day to go well—we had told investors and analysts a few days earlier that we expected the company to earn more than a billion dollars by the end of the year—I was asked if I could get a reporter from the Wall Street Journal to cover it.

Nataline’s bone marrow transplant, eventually performed the day after Thanksgiving, went well, but serious complications soon developed, especially in Nataline’s liver, stemming from the heavy chemotherapy infusion and accompanying radiation and the transplant itself. A week after the procedure, her doctors said she had to have a liver transplant.

In early December, not long after CIGNA’s Investor Day, which had cost $250,000 ( just feeding the 150 investors, analysts, and CIGNA executives at the six-hour meeting had cost $60,000), Nataline was taken to the ICU, where she would wait for her new liver. Knowing that insurers normally require prior authorization—a liver transplant costs about $250,000, or the same amount CIGNA had just spent in New York—her doctors contacted CIGNA’s transplant unit and asked for approval.

It never occurred to the Sarkisyans that there would be problems. The biggest worry they had was whether a liver would become available and be a match for Nataline. Early in the morning a few days later, Hilda got the call she had been praying for. “Put on your best outfit, because we have the perfect fit for your daughter,” she recalls one of the doctors telling her.

Because it was the Christmas season, Nataline’s favorite holiday, Hilda decided on a red outfit and rushed to the hospital, grateful that Nataline would soon be getting the liver to save her life. She was stunned when one of her daughter’s doctors pulled her aside and told her, “Hilda, we have a liver, but we don’t have clearance from CIGNA.”

“What are you talking about?” she asked him, 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 Mercedes-Benz, where he worked as a technician. CIGNA administered the health care benefits for the company’s employees and their dependents. It was a self-insured account—Mercedes-Benz, rather than CIGNA, assumed the risk—a fact that had seemed of little consequence at the time but that the Sarkisyans would soon learn was of enormous consequence.

Nataline’s doctors told the Sarkisyans that before they could get approval to proceed with the transplant, they would have to do a biopsy of Nataline’s liver to satisfy a request received from a CIGNA medical director. The Sarkisyans felt they had no choice but to agree to it. “They had to cut her and get a piece of her liver just to prove to CIGNA that she needed a transplant,” Hilda said.

By the time this procedure was done, however, the liver that had been a perfect match had to be given to another patient. The family now could only wait—and pray—for another one.

Another liver did become available a few days later, but the Sarkisyans were in for yet another shock: CIGNA refused to pay for the liver transplant, even though her doctors said it was her only hope for survival—and even though the procedure CIGNA had demanded had proved that her liver was indeed failing. A CIGNA medical director sent a message to Nataline’s doctors at UCLA, where hundreds of transplants are performed every year, saying that the transplant for Nataline, in his view, would be “experimental.”

It had never occurred to the Sarkisyans that their daughter’s fate would be in the hands of someone whom they had never met and who had never laid eyes on their daughter, much less personally examined her or assessed her condition.

When Nataline’s treating physician, a professor of pediatrics in the Division of Gastroenterology, Hepatology and Nutrition at UCLA, submitted his original request for prior authorization, a CIGNA transplant case manager in Pittsburgh began the process of reviewing Nataline’s medical records and the Sarkisyans’ benefit plan. Three days later, she recommended that CIGNA cover the transplant. However, because Nataline by then had developed a lung infection while in the hospital and was very weak, the case manager asked the medical director of CIGNA’s transplant unit to look at the case.

The medical director denied the request from Nataline’s doctors, noting that the Mercedes-Benz benefit plan did not cover “experimental, investigational and unproven services.” In his opinion, a liver transplant for someone in Nataline’s rapidly declining state of health would fall into that category.

Within hours of receiving this denial, Nataline’s treating physician and three of his colleagues at UCLA pleaded for him to reconsider, insisting that the requested transplant would not be experimental. They contended that similar patients had been shown to have a sixty-month survival rate of approximately 65 percent.

Despite the doctors’ plea, CIGNA was not persuaded that there was enough documented evidence that a liver transplant for someone in Nataline’s condition would be appropriate. The company stood by its decision. In communicating that it was upholding the denial, CIGNA said that the lung infection and other problems that had developed since Nataline had been admitted to the hospital would be unlikely to result in a successful outcome for Nataline and that, consequently, the surgery would not meet CIGNA’s definition of medical necessity. Who was right? The reality is that in many cases, no one ever knows. If a critically ill patient dies after an insurance company refuses to pay for a doctor-ordered procedure, which often happens, it can never be proved that the patient would have even survived the procedure.

The Family Fights Back

The Sarkisyans were devastated when they got the news that CIGNA wouldn’t cover the transplant—but they were not about to give up hope, Hilda in particular. She believed that she and her friends in the Armenian community might be able to mount a campaign to shame CIGNA into approving the transplant. So she immediately began contacting family and friends in the close-knit community in Los Angeles and asking them to do anything they could to draw public attention to Nataline’s plight.

Nataline’s godfather started making calls to reporters and TV news producers throughout L.A. and the San Fernando Valley, where the Sarkisyans live. The TV reporter who left that first voice mail message for me had just talked to him. (The information that the Sarkisyans owned a second home—actually a rental property—apparently came from a hospital employee who noticed that Nataline’s mother had listed it among the family’s assets on a form the hospital had asked her to fill out when Nataline had been admitted. Whether CIGNA had access to that information is unclear, but the company denied that the family’s rental property was a factor in its decision.)

Nataline’s story likely would have stayed local had it not been for the California Nurses Association, a politically active and media-savvy union that represents thousands of nurses throughout the state. A coworker of Hilda’s who had been a nurse contacted CNA’s leadership in Oakland and asked them to get involved in the Sarkisyans’ campaign. It didn’t take much arm-twisting. CNA spokeswoman Liz Jacobs said the organization never considered not doing all it could do for Nataline.

“We’ve taken our oath to be patient advocates,” she said, “and we will be advocates wherever the need takes us. So we were up for this.” Early on Thursday morning, December 20, CNA blanketed the media with a news release announcing a protest that would be held at eleven a.m. that day in front of CIGNA’s California headquarters, in Glendale, which happens to be in the heart of the Armenian American community. The headline was sure to get the media’s attention: “Life Denied: Nurses, Family of Sick Teen March on Health Insurance Company; 17-Year-Old Girl Needs Liver Transplant, CIGNA Denies.”

“My daughter survived two bouts of cancer,” the release quoted Hilda as saying, “and against all odds has been stable even with so many of her organs not working, only to now be told that she cannot get the only treatment that will save her life because some administrator in some office thinks it is too expensive. We needed help in standing up against this insurance provider, and of course it was the nurses who stepped forward.”

My phone started ringing off the hook as soon as the nurses’ release went out. I knew I had a crisis on my hands when calls poured in not only from local TV and radio stations but also from the Los Angeles Times, CNN, and NBC—and even from the general public. The release, which was posted on the home page of CNA’s Web site, also appealed to the public to call CIGNA demanding that it “provide the care Nataline needs.”

The nurses were also making a political statement with the protest. The California legislature was embroiled in a debate on reforming the state’s health care system, and CNA, which has long sup-ported a single-payer system that would ban private insurers, cited Nataline’s situation as a reason why state lawmakers should reject a reform plan supported by Governor Arnold Schwarzenegger and some legislative leaders.

“CIGNA’s refusal of Nataline’s liver transplant—overruling the urgent appeals of an array of doctors and nurses—is indicative of the failures of the new health care plan sponsored by Arnold Schwarzenegger and [Assembly Speaker] Fabian Núñez” the release said. “That plan, which is actively supported by CIGNA, requires every single Californian to purchase insurance products from companies like CIGNA, but does not address the problem of denial of care evident in this situation.”

As soon as I heard about the news release—from a reporter who called asking for CIGNA’s reaction to it—a colleague and I immediately began alerting the company’s top executives. The first person I forwarded the release to, of course, was my boss, Carol Ann Petren.

When Petren responded to my e-mail by asking if I would have the draft of a policy paper on her desk first thing the next morning, I knew she hadn’t grasped the significance of what was happening. I immediately ran up the stairs from my office on the sixteenth floor to hers on the seventeenth and interrupted a meeting she was in.

After I stressed what it meant that the national media was covering a protest at our headquarters in California, she realized she had better brief our CEO, Ed Hanway, whose office was on the other end of the hall from hers. She called him herself and then asked her assistant to track down two other executives: David Cordani, then president of CIGNA HealthCare, and Dr. Jeffrey Kang, the company’s chief medical officer. Hanway was in Petren’s office in a matter of minutes. Cordani and Kang, who worked in Bloomfield, Connecticut, where CIGNA’s health care operations were based, joined us by phone.

Kang, whom CIGNA’s transplant medical director had briefed a few days earlier, explained the reasoning behind the denial and said that based on what the medical director had told him about Nataline’s worsening condition, he supported the decision not to cover the transplant. He added, however, that he had ordered an expedited external review of the case, and the results were expected the next day.

Waiting until the next day to hear from the reviewers was completely out of the question. TV crews were already setting up in front of CIGNA’s Glendale offices, so our discussion quickly turned to the PR damage that Nataline’s story would do to the company. As I always did in situations like this, I explained the PR consequences—the likely damage to the company’s reputation—if we didn’t relent and agree to cover the transplant. I noted that it would be different if the patient were an older person. Reporters probably would not have found the story at all compelling if the patient had been a forty-five-year-old man. The fact that the patient was a sweet-looking seventeen-year-old girl, whose smiling face had been seen by thousands of TV viewers in Southern California, made the story irresistible to the media. There was no way the company would be perceived as anything other than a cold, heartless corporation if we didn’t give a teenage girl a fighting chance to live, even if the odds weren’t that good that she’d survive.

Because the scheduled protest was attracting so much media attention, it was clear we would need outside public relations support to help deal with what could become the biggest PR crisis in company history. The first person Petren mentioned was Larry Rand, highly regarded in the corporate world for his crisis communications skills. Rand was one of the founders of Kekst and Company, a New York firm that specializes in investor relations and financial PR for publicly traded companies. CIGNA had Kekst on retainer so that Rand and his staff would be available whenever we needed them.

Hanway agreed that we needed them now.

Rand was in a meeting when Petren called him. His assistant said she’d have him call her back later.

“No, I need him right now,” Petren told her. “It’s urgent. Tell him Ed [Hanway] is here with me.”

Rand was on the phone in minutes, and when Petren told him about the protest, he didn’t need to hear anything else.

“Look, Carol, you have to make this go away. Approve the transplant—now.”

Although I had given the same advice, Hanway and Petren needed to hear it from an outside expert. If Nataline died, CIGNA would be blamed for her death, and the resulting publicity would be so bad that the company could lose customers. I added that it would just be a matter of time before one of the presidential candidates seized on the story—possibly elevating it to a disaster for the entire industry.

The group quickly agreed that damage control was of paramount importance. Cordani, who as president of CIGNA’s health care division had the most to lose, made the decision: CIGNA itself would pay for the transplant, using its own money rather than asking Mercedes-Benz to cover it. I was relieved. I was certain that even though the media would report that CIGNA had caved to pressure, the bad publicity would be over soon and people would forget the case or at least forget that CIGNA was the insurance company involved. There would be no long-term reputational damage.

I was just as relieved, though, for Nataline’s family. This harrowing and frightening episode in their lives just might have a happy ending. I imagined how joyous and hopeful my wife and I would be to hear from our insurance company—which would be CIGNA—that a procedure that might save Emily’s life had been given “clearance.”

I sent a quick e-mail to AHIP’s PR staff to let them know that CIGNA would soon notify the family that it would cover the transplant, because they, too, were being inundated with calls. Before we could say anything about it to the media, however, someone had to get word to Nataline’s family and doctors. Kang said he would make sure that the transplant case manager reached out to them right away. The other thing that needed doing right away was crafting the words to explain why we had changed our minds. We’d have to explain it in a way that didn’t look like we were caving in—or setting a precedent that could nip us in the future.

It was my job to figure out how to say that CIGNA was now agreeing to approve a transplant even though we still believed we’d been right to deny it in the first place—and that our change of heart had nothing to do with the bad publicity.

Right Decision, but a Little Too Late

As I ran downstairs to start writing, I knew my staff would be happy to hear about the reversal. We had all gotten caught up in the story emotionally and were hoping that Nataline would be able to get the transplant and that it wouldn’t be too late. Although the prevailing belief was that Nataline’s chances of survival were slim—even if she got the transplant—I didn’t want to believe it. I still imagined a happy out-come, with Nataline walking out of the hospital in a few weeks with her mom and dad and brother.

I also knew that no one would really believe that CIGNA had changed its mind solely out of empathy for Nataline and her family. But I was willing to spin it that way.

I was under the gun to write the statement and get it to Petren and the others for their review, but I decided to quickly check my e-mail first to see if there were any new developments or media inquiries. I couldn’t believe what I saw. E-mails were literally pouring in—at least five hundred more than when I had left for Petren’s office. A few were from the media, but most were from people all over the country who’d heard about CIGNA’s refusal and were writing to express their anger and outrage. I read a few and then alerted security because some were wishing harm to my family and me. I had to ignore most of them, for the time being anyway, because I had to begin writing what CIGNA as a company would say to the Sarkisyans and the world. About an hour before the start of the protest in California, I finished a draft of what would be the core of both our media statement and the letter to Nataline’s father.

The letter was the first priority, and after numerous edits it was ready to go. “Dear Mr. Sarkisyan,” it began. “We received an appeal request on Dec. 17, 2007. We understand you are appealing the medical necessity denial for a liver transplant for your daughter, Nataline. After reviewing the information submitted with your appeal request and the terms of your benefit plan, I am pleased to let you know that on Dec. 20, 2007, CIGNA HealthCare has decided to make an exception in this rare and unusual case, and we will provide coverage should Nataline’s health care providers determine to proceed with the requested liver transplant. 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.”

I also had my media statement ready to blast to the media as soon as the letter was hand delivered to the Sarkisyan home.

With just ten minutes to go before the protest was to begin, I still didn’t have confirmation that the letter had been delivered, so I started calling around to find out what was going on. There was a hitch no one had anticipated: The Sarkisyans were not at home, and no one knew where to find them.

Nataline Sakisyan | Credit: Nataline Sarkisyan Foundation

It occurred to me that they probably were on their way to the protest. So I turned on the TV in my office, and sure enough, CNN was broadcasting live from the front of CIGNA’s Glendale offices, and I could see a woman in the crowd who I assumed was Nataline’s mother amid what looked like scores of nurses carrying signs with Nataline’s picture and the message ‘call CIGNA today.’ The crowd was chanting, “No more denials, no more denials, health care for all now.”

I called CIGNA’s top lawyer in California, Bill Jameson, and told him he would have to send someone right away to tell the Sarkisyans that CIGNA would pay for the transplant. Hilda had already been interviewed on camera and clearly didn’t know.

A few minutes later, I saw someone whisper in her ear. I could tell she was getting the good news. “CIGNA just approved!” she screamed.

The campaign had worked. CIGNA had been pressured into reversing the denial. Grigor Sarkisyan gave his wife a big hug. They looked so relieved and so happy.

The crowd cheered. Tears were streaming down the faces of many of the protesters.

I was just as happy as they were—and just as relieved.

Within an hour, CNA issued a news release with the headline “CIGNA Capitulates to Patient Revolt. Following Massive Protest, Insurer Authorizes Transplant for 17-year-old Nataline Sarkisyan. CNA-Sponsored Protest Sparks Flood of Calls from Across U.S.”

“CIGNA had to back down in the face of a mobilized network of patient advocates and health care activists who would not take no for an answer,” the release quoted CNA executive director Rose Ann DeMoro as saying.

I would never acknowledge it publicly, but DeMoro, of course, was right. CIGNA had capitulated. My job now was to spin the reversal in a convoluted way that would make people think the media attention, the protest, the calls, and the e-mails had nothing to do with it.

“Our hearts go out to Nataline and her family as they endure this terrible ordeal,” the media statement began. Then there was this fifty-nine-word whopper of a sentence that only a lawyer could love: “Based on the unique circumstances of this situation, and although it is outside the scope of the plan’s coverage and despite the lack of medical evidence regarding the effectiveness of such treatment, CIGNA HealthCare has decided to make an exception in this rare and unusual case and we will provide coverage should she proceed with the requested liver transplant.”

The statement ended with this: “Our thoughts and prayers are with Nataline and her family at this difficult time.”

That last part was true, at least for me. My thoughts and prayers actually were with Nataline and her family, as were those of many CIGNA employees. I felt a little queasy about writing it, though, because I knew it was a PR contrivance—and one we used whenever we had to issue a statement in such circumstances. PR people know that in situations like this one, it is important to convey how sympathetic and caring we are.

I went home late, exhausted, but knowing that the stress of my day was nothing compared to what the Sarkisyans had gone through. I was happy for them and hoped they would all get much-needed rest before Nataline’s transplant.

But a few minutes after ten p.m., my phone rang at home. There would be no need for CIGNA to cover the transplant after all. Nataline had just died.

A Life Slips Away

Hilda Sarkisyan had no idea her daughter was so close to death when talking to the reporters in front of CIGNA’s offices. “I told the media my daughter was going to be fine,” she said. “She’ll be getting the transplant.”

However, when she arrived at the hospital after the protest, many friends and family members were already there. Her husband, in fact, had slipped away from the protest and returned to the hospital alone after his sister had called to tell him that Nataline’s condition had taken a turn for the worse. Hilda found out later that many of her relatives and friends had learned before she did that Nataline was not going to recover.

“I was shocked to see so many people there,” she said. “Even the archbishop was there. One of the main leaders of the Armenian community came, and the next thing you know, my husband, my uncle and my aunt, everybody was staring at me. Then my husband said, ‘Hilda, I love you.’

“ ‘Why did you say that?’ I thought. We’re not like that. We love each other, but we don’t say that in public.

“I said, ‘Okaaay.’

“ ‘Hilda,’ he said, ‘our daughter just passed away.’

“They had to put me in a wheelchair.”

With tears streaming down her face, she searched in her purse for a notepad. “I just began to write,” she said. “I had done everything I could to save Nataline, but I knew my work was not over. I felt actually that my real work was just beginning. I promised Nataline as I said good-bye to her that I was going to make sure people understood that what happened to her, what happened to our family, could happen to them, too.”

The Spin Begins

When I heard that Nataline had died, I knew that my real work had just begun, too. My top priority—the first responsibility listed in my job description—was to “protect, defend and enhance” the company’s reputation. The size of my raise and bonus depended on just how well I managed to do that, and I knew I would play a central role in a weeks-long, all-out damage-control campaign. I would have to convince the media and the public—in a very nuanced and subtle way— that CIGNA, despite its reversal, had been right in denying coverage for the transplant in the first place, that it had, in fact, had a responsibility to its customers to refuse to pay for it.

It turned out to be both my biggest and my last attempt to influence public opinion on behalf of an industry I had served for nearly two decades.

My heart wasn’t in it. On reflection, I was actually grieving, although I didn’t realize it at the time. What I did know was that I didn’t feel up to the task of spinning. I felt, instead, burned out. But I had a job to do, and I had to do it. Whether I liked it or not, I was going to be the company’s main voice on the case, although I would enlist our chief medical officer, Kang, to talk with the media as well. One of the things I had learned years ago was that executives with an M.D. after their names were especially influential with reporters when the stories pertained to patient care. Whenever I could manage it, I would try to get CIGNA’s point of view delivered in print by a medical director, if for no other reason than to have the M.D. appear in the story—especially if it was a horror story.

The first thing I did after I learned of Nataline’s death was brief my boss, Petren. The second thing I did was call the media-monitoring services I used and ask them to send me every story that appeared anywhere in the world, in any medium—print, broadcast, or online— as soon as possible. Third, I started writing the media statement we would begin using the next day.

“Our deepest sympathies are with the Sarkisyan family as they mourn the death of Nataline,” I wrote. “All of us at CIGNA send our thoughts and prayers to those who were touched by Nataline’s life.” I knew I had to start it that way, and it was heartfelt, but it nevertheless seemed like I was writing those sentiments only because it was a PR necessity.

Nataline Sarkisyan with her family | Credit: Nataline Sarkisyan Foundation

I went on to note, in awkward prose, that CIGNA had agreed to cover the transplant “even though there was no medical evidence regarding the effectiveness of a liver transplant in this rare case, and no coverage for this procedure under the health plan chosen by the employer who provided health benefits to the Sarkisyan family.” I added that CIGNA had a responsibility to its customers “to make medically appropriate decisions based on scientific and clinical evidence.”

Petren and others who reviewed the statement made edits for legal reasons that I thought made the language even more awkward, but there was nothing unusual about that. Lawyers always had the last word when litigation was possible or anticipated.

The news coverage before Nataline’s death, significant as it was, paled in comparison to the avalanche of media reports and blog posts that began almost immediately after. The first batch retrieved by the monitoring services went on for pages. I only had to read the head-lines to grasp how damaging the publicity was going to be.

The one bit of good news for CIGNA was that the company was not mentioned by name in most of the headlines. People had to read or listen further to know or remember that CIGNA was the company. This was not much of a silver lining, because most of the broadcast stories did include clips from the protest in front of CIGNA’s Glendale building— and the company’s turquoise “tree of life” logo, with the tagline “Business of Caring” below it, appeared in many of the news reports.

My staff and I were quickly overwhelmed. It was not possible for us to talk to every reporter who called seeking comment or an on-camera interview. I asked my assistant to get every reporter’s e-mail address and then send them our statement with a note telling them they could attribute it to me as the company’s spokesman. I returned a few calls, but only to reporters at the major newspapers and networks. We had to have help.

Petren had been impressed with the way that PR firm APCO had earlier worked behind the scenes on behalf of the industry to discredit Michael Moore’s SiCKO. After a brief conversation with Robert Schooling, the APCO executive who had led the SiCKO work, she hired the firm. In addition to Schooling, APCO would assign Myron Marlin, senior vice president and senior strategist, to the account. A lawyer as well as a PR guy, Marlin had been director of public affairs at the Department of Justice during the Clinton administration. Schooling and Marlin would become active participants in the twice-daily “California case” strategy sessions and conference calls led by Nicole Jones, our corporate secretary.

Jones’s “lead team,” as she called the group, also included Hanway, Cordani, Kang, Brian Benjet (who headed litigation for CIGNA), G. William Hoagland (the company’s Washington-based vice president of government affairs, who had been a top aide to Senate majority leader Bill Frist), and Larry Rand and Lissa Perlman, both of Kekst. Karen Ignagni, president of AHIP, also called in occasionally, as did her lieutenant, Mike Tuffin, who led strategic communications for the trade group.

Benjet was a member of the lead team because the Sarkisyans had hired Mark Geragos, often referred to as the “lawyer to the stars” (Michael Jackson was among his famous clients), to represent them. Geragos had also long been active in the Armenian community in Los Angeles. Hilda Sarkisyan said that she and her husband had retained him initially in their efforts to get CIGNA to pay for the transplant; the day after Nataline died, he held a press conference to announce that he would be filing a lawsuit against CIGNA.

“My reading of the statute is clear that this corporation had the mental state that they consciously disregarded her life,” Geragos said at the press conference. In addition to filing his own lawsuit, he said, he planned to ask the U.S. attorney in Los Angeles, Thomas O’Brien, to press murder or manslaughter charges against the company that “maliciously killed” Nataline because it didn’t want to bear the expense of her transplant and aftercare.

After those comments made headlines, Benjet hired Debra Yang, who was O’Brien’s predecessor as U.S. attorney until she resigned in 2006 to join a big international law firm. The lead team also started a “Geragos watch” to monitor his actions and comments. As part of that watch, Yang arranged to have someone attend Nataline’s funeral on December 28 and report back if the company was mentioned in any way during the service.

Schooling and Marlin’s responsibilities were to help create a detailed communications plan that would encompass the same tactics that APCO had used in its behind-the-scenes campaign against SiCKO. The plan was ready for review by the lead team on December 30 and, like the SiCKO strategy, relied heavily on the firm’s ability to place stories with reporters, editors, and producers it had good relationships with and to get “third parties” to convey CIGNA’s messages.

The main objective was to try to drive reporting on the case to the broader issue of tough decisions that have to be made about the allocation of scarce organs and whether someone in Nataline’s condition would have been approved for a transplant in any other health care system around the world. The point was to disabuse the media, politicians, and the public of the notion that Nataline would have gotten the transplant if she had lived in Canada or France or England or any other developed country.

APCO planned an aggressive outreach to reporters and pundits likely to be most receptive to such “big picture” stories and to be sympathetic to CIGNA’s point of view. APCO would also draft and work to place letters to the editor and op-ed pieces “to set the record straight” if a newspaper carried a negative story or editorial about the case. Knowing that the industry was worried that advocates of health care reform would seize on the case as a reason why the American health care system needed to be drastically overhauled, APCO would use the op-eds as vehicles to also argue that a government-run system would not keep such cases from happening in the future, and to suggest that a more useful role for government would be to develop a national policy on coverage for “experimental” treatments.

The pundits APCO proposed to reach included some of the most famous TV health care reporters and commentators, and the list of third-party advocates was a who’s who of reliable insurance industry allies, including many of the same people APCO had enlisted earlier to help in its SiCKO-bashing campaign. All were associated with conservative think tanks, big-business organizations, or legal-reform groups that the health insurance industry had reached out to many times in the past for help disseminating messages that could not be traced to AHIP or any insurer. And in anticipation that Geragos would continue generating stories about his lawsuits, APCO had a second list of pundits to argue that America was plagued with “frivolous lawsuits” that were driving up the cost of health care.

A third list was doctors whom APCO or CIGNA would ask to be third-party “experts” on organ transplants. They would be available to speak with reporters or to write op-eds, if necessary, that would convey the company’s point of view.

After the Targets Comes the Spin

The APCO plan also included a list of approved talking points and a comprehensive set of potential questions and answers that all of the spokespeople would be required to study before talking with anyone in the media.

Two days before Schooling and Marlin laid out the communications plan to the lead team in Philadelphia, Nataline was laid to rest in California. Shortly before her burial, the Sarkisyan family led hundreds of mourners, many of them wearing pink (Nataline’s favorite color), into St. Mary’s Armenian Apostolic Church, the spiritual heart of the Los Angeles Armenian community. (Debra Yang reported to us that the people who spoke did not use the occasion to condemn CIGNA but to remember what Nataline had meant to them and to others.)

After the eulogies were delivered, Nataline was buried in a white coffin. Her heartbroken father had insisted on white. To keep her spirits up while she was in the hospital, he had promised Nataline that he would buy her a white Mustang as a graduation present. “I had to buy her a white coffin instead,” he told me two years later when I met the Sarkisyans in their home.

APCO had predicted that a presidential candidate, probably John Edwards, would begin talking about the Sarkisyan case. They were right. Edwards even invited the Sarkisyan family to join a campaign stop in New Hampshire. Elizabeth Edwards, campaigning with her husband, introduced the family at an emotional town hall meeting in Manchester on January 6, 2008.

“I feel empty inside,” Hilda Sarkisyan told the crowd. “But this is not only about my daughter Nataline; it’s about the whole world, every one of you. This could have happened to any of us. We have to put a stop to these people. They cannot tell us who’s going to live and who’s going to die. Right now I am here for her. We have to make a change.” After this appearance, however, media interest in the case began to wane. Thanks to the successful implementation of the APCO strategy, many of the stories that did appear focused more on CIGNA’s side of the story than on the Sarkisyans’. By this time, reporters writing about the case were looking for fresh angles, and the APCO team and I were pushing those angles to select media.

Of course, I played a key role in this effort. One of my jobs was to arrange interviews for Kang with reporters with whom I had developed good relationships and who might be more inclined to write stories from CIGNA’s point of view. I scored several coups when favorable or at least balanced articles began to appear in important publications, including Forbes and the Wall Street Journal. These were especially important because they would be read by the CEOs and benefits managers of CIGNA’s corporate customers, some of whom were already calling us to get statements they could use with their employees who were enrolled in CIGNA plans.

I couldn’t have been happier to see the headline on the January 8 Forbes story: “Does CIGNA Deserve All the Blame?” Reporter David Whelan, an influential reporter whom I had allowed to interview Hanway several weeks earlier at CIGNA’s Investor Day in New York, included the Kang quotes I had hoped he would use. He also left out a quote I was praying he would not use.

“CIGNA’s medical director, Jeffrey Kang, a physician who used to be a high-ranking official with the Centers for Medicare and Medicaid Services, says there is no way that CIGNA can stop doctors from performing a liver transplant,” Whelan wrote. “A national organization called the United Network for Organ Sharing manages the waiting lists. One of UNOS’s principles is that patients should get transplants regardless of their financial means. ‘Some people have said we denied a liver,’ Kang says. ‘But the reality is we only denied paying for it.’ ”

During the telephone interview (I was also on the line, as I was on all interviews with CIGNA’s top executives), Whelan pressed Kang, who was in his office in Connecticut, on whether CIGNA had had any financial incentives to deny the transplant. Staying on message, Kang said that because Grigor Sarkisyan’s plan was a self-insured account, it would have been the employer’s money—not CIGNA’s—that would have been used to pay for the transplant.

“You must have some financial incentives to keep costs down, right?” Whelan followed up. “The short answer is no,” Kang replied.

Then, to my astonishment, he kept going: “I have to be honest, though. If we have a three-year contract with an employer, if that employer is looking to rebid that contract, they’ll say, ‘Let’s look at what CIGNA’s track record was overall and see what we can get from a competitor.’ ” In other words, Kang was acknowledging that to keep accounts like Mercedes-Benz, an insurer had to demonstrate that it did a good job of holding down medical expenses.

I breathed a sign of relief when Whelan moved on to another question. If he hadn’t, I would have been prepared to butt in and tell Whelan that Kang had only a few minutes left before he had to run off to a meeting. That would have been my signal to Kang that he had to wrap up the interview as soon as possible.

I breathed another sigh of relief when I read Whelan’s story. It made no mention of that exchange.

We also got lucky with the WSJ story, co-written by Laura Meckler and Vanessa Fuhrmans, another influential reporter I had worked especially hard to cultivate a good relationship with.

The first paragraph of the story, which appeared on the front page on January 7, was close to perfect from our point of view: “John Edwards has been bashing big health insurers in recent days with the story of a girl who died waiting for a liver transplant. But the details of the case suggest the Democratic presidential candidate may be over-simplifying the tale.”

The Journal reporters also reached out to AHIP’s Ignagni, who told them that AHIP planned to work with medical societies on how to finance or cover experimental treatments. “We’re not taking a PR approach to this but a policy approach,” she said. “People want us to solve the problem, not just discuss it.”

One of APCO’s biggest successes came on January 11 when the WSJ ran an op-ed by Scott Gottlieb, a resident fellow at the American Enterprise Institute. Using John Edwards as his foil, Gottlieb opened with a glaring misrepresentation of Edwards’s health care reform proposal and managed to work in a reference to Edwards’s former career as a plaintiff’s attorney, sure to raise the hackles of the WSJ’s conservative readers.

“Campaigning in the primaries,” Gottlieb wrote, “former Sen. John Edwards is leveraging the tragic story of Nataline Sarkisyan— the 17-year-old California woman who recently died awaiting a liver transplant—to press his political attack on insurance companies and argue for European-style, single-payer health care. But the former trial lawyer, accustomed to using anecdotes of human suffering to frame his rhetoric, is twisting the facts.”

Calling Edwards a single-payer supporter was such a stretch of the candidate’s position that Gottlieb and the Journal’s op-ed page editors surely knew better. Edwards’s platform—which was easy to find on his campaign website—actually called for more competition among private insurance companies, not their abolition under a government-run single-payer system.

The WSJ also gave Gottlieb ample space to include every key message CIGNA and AHIP could have wished for in the op-ed. It was a perfect example of how PR uses friendly pundits to shift the focus of news coverage away from a company under attack and toward a broader issue, and to create a new villain.

The real bad actor in this sad story, according to Gottlieb, was not CIGNA but someone of a type that a majority of the people who read the WSJ’s editorial pages loved to hate. In this case, it was—as characterized by Gottlieb—liberal, Europe-loving trial lawyer John Edwards.

This Time, I Spin Myself

Seeing the result of APCO’s work was what finally got me to do what I knew I had to do but, until then, hadn’t had the courage or will to do: quit my job.

It became clearer to me than ever that I was part of an industry that would do whatever it took to perpetuate its extraordinarily profitable existence.

I was dismayed with what I read and disgusted with myself. It finally dawned on me that, in my own quest for money and prestige, I had sold my soul. I had become the antithesis of what I had once tried to be as a journalist many years before. “Who are you?” I remember asking myself that day. “How did you get here? How did this happen to you?”

I had started hating my job before then, but never enough to walk away from it. I knew now I had had enough.

A few weeks earlier, I’d happened to be watching CBS’s Sunday Morning when it aired a story about people who had left corporate jobs late in their careers to do something that paid less but gave them a greater sense that they were engaging in “right livelihood,” as the Buddha would say. One of the people interviewed was Margie Maxwell, a CIGNA colleague who, I learned to my surprise, had left her high-paying job as vice president of sales in the Carolinas to become the director of development at a clinic that provided free health care to the poor.

Maxwell flashed back to mind after I read Gottlieb’s op-ed, so I tracked her down to find out how things were working out for her. She told me she was making a fraction of what she had made at CIGNA, but she had never been happier. I confided to her that I wanted to leave CIGNA, too, but I didn’t have the guts to do it—and I didn’t have any idea how I would earn a living if I did.

“Well, Wendell,” she said. “You’re just going to have to leap and trust that the net will appear—because it will.”

Hokey as it sounds, I decided the universe was telling me what I needed to hear through Maxwell, so I made up my mind that day. I was going to go into a new line of work. I just didn’t know what it would be.

There’s a reason I couldn’t get Maxwell’s advice out of my head: I was stone sober. In previous years, I would have been consuming enough alcohol to stay sufficiently anesthetized. But I had quit drinking—on October 17, 2006, to be exact—after coming to the conclusion that I was slowly committing suicide by drinking at least a six-pack of beer almost every single night to keep from thinking and feeling. Even when I was buzzed, though, I couldn’t get out of my head the nagging belief that I was put on this earth to do something much more important than what I had been doing for the last twenty years. I didn’t have a clue what it might be, but I decided that I would never find out if I kept destroying my own liver.

I’m confident that if I had not quit drinking, I would not have been affected by SiCKO the way I had been, and I probably would not even have thought about going to the RAM expedition in the first place. I also doubt that I would have allowed myself to get so emotionally involved in the life and death of Nataline Sarkisyan.

A few days after talking to Maxwell and after many conversations with my family— and with their support—I asked my department’s HR director if she could come to my office to discuss a personnel matter. I was going to take the leap.

My boss was not shocked when the HR director told her that I wanted to leave. A few weeks earlier, during one of our one-on-one meetings, Petren had seemed exasperated that I was not contributing as much as she thought I should.

“Wendell, you don’t seem to be engaged,” she said to me. I made an effort to assure her that I was, indeed, engaged—but she and I both knew the truth.

Not only was I no longer “engaged” in my responsibilities as chief flack for the company, but I also didn’t see eye to eye with her or Hanway on health care reform, and I had simply had it with trying to “protect, defend and enhance” the company’s reputation. I didn’t have it in me to handle any more horror stories. Nataline Sarkisyan’s life and death had affected me profoundly.

Petren accepted my decision to leave but asked me to stay on for several more weeks. She needed time to determine who would assume my responsibilities, and she wanted me to stay long enough to help with the company’s annual meeting of shareholders, which would be held in April, and the first-quarter earnings report, which would be released on May 1.

I agreed.

My last day as a CIGNA employee was May 2, 2008, the day after we announced that we had earned $265 million, or ninety-four cents a share, on revenues of $4.6 billion during the first three months of the year. The stock price closed that afternoon on the New York Stock Exchange at $42.26, up 3.5 percent from the day before.

CIGNA had had a very good day on Wall Street. Investors were happy because CIGNA had exceeded their expectations. CIGNA executives on the lead team, all of whom had stock options—me included— were richer financially.

But I was richer in every way thinkable.

 

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