On June 4th, at our Rage for Justice Awards, Consumer Watchdog will induct two remarkable patient advocates into the select group in Consumer Watchdog's Hall of Fame.

Dana Christensen and Hilda Sarkisyan will be welcomed into the Hall of Farme for their heroic efforts to raise awareness about health insurance company abuses.

Dana was left with a half million dollars in medical bills after her husband Doug died from cancer because she had a junk health insurance policy.  The policy paid almost none of his expenses. As a result of Dana's education and advocacy efforts, federal health insurance reform included a provision capping out-of-pocket costs to consumers — requiriing insurance companies to stop the sale of junk health insurance policies.

CIGNA failed to authorize a potentially life saving liver transplant for HIlda Sarkisyan's daughter Nataline.  Along with the California Nurses Association, Hilda and her family took the fight to CIGNA's headquarters and forced approval of the treatment. Only it was too late. Nataline died before they could operate. Due to a loophole in federal law, the Sarkisyans cannot hold CIGNA legally accountabe for the death. Hilda and her family have dedicated their lives to changing the law and closing that legal loophole.
 

The following are excerpts about Dana and Hilda's journeys from my book The Progressive's Guide To Raising Hell.

Dana vs. Goliath

With health insurance costs skyrocketing in 2006, insurers hatched a plan to remove themselves from the patients' rights laws that were passed in forty-four states in the late 1990s and early 2000s. The industry explained that the insurance companies wanted to "reduce their costs of compliance" so insurance would be cheaper. It sounded simple enough to President Bush and Congress, who were about to enact the plan. Attorneys general, governors, and state insurance commissioners complained, but it looked like the industry had the votes.

Then Dana Christensen came to Capitol Hill with my colleagues Carmen Balber and Jerry Flanagan.

Christensen had been working with my consumer group to warn against the very type of "junk health insurance" policy that we feared would become the norm if state regulation were bypassed. She and her husband, Doug, had been technically insured, yet Dana was left with $450,000 in unpaid medical bills when her husband died of bone cancer.

The fine print in her insurance policy had no limit on "out-of-pocket cost." So she had to pay most of the costs of his chemotherapy and cancer care. On his deathbed, Doug asked Dana to divorce him so she would not have to be liable for the medical bills. She refused. In the end, only because of a lawsuit under state law, which prevented fraudulent representations, was Dana able to recoup the cost of those bills from the insurer.

Dana flew into Washington on Monday, on the heels of a PBS NOW news story about her case that aired the previous Friday. She held a press conference with Senators Edward Kennedy and Richard Durbin, then lobbied other senators. The power of her story stopped the legislation dead in its tracks.

"What's the point of paying for health insurance and then, when you need it, discovering the benefits you thought were promised and paid for just aren't there?" Dana asked. "That's what happened to my husband Doug and me."

Human truth is very hard for a human being, even the most hardened Washington politician, to turn away from.

A Mother's Stuggle For Justice

One sunny morning early in January 2010 I found myself in Ronald Reagan country, near the epicenter of the devastating Northridge earthquake of 1994, in the tree-lined suburban community of Porter Ranch. I waited outside the home of Hilda Sarkisyan, who lost her daughter to cancer at the age of seventeen after CIGNA denied a potentially lifesaving liver transplant.

Waiting with me was the former CIGNA executive who handled public relations for the insurer in the case and then had a crisis of conscience.

Wendell Potter came onto the scene of health care reform suddenly the summer before. He called me first, before coming out as a whistleblower, and introduced himself. I warned him about the dangers for whistleblowers and the alienation they faced, but Wendell knew he could make a huge difference if he decided to come forward. After the handling of Sarkisyan’s case, Potter could no longer continue in his CIGNA job, and he retired at age fifty-six. He wanted to tell the world how health insurers really operate.

Wendell was nervous that morning. He had flown from his home in Philadelphia the night before just to see the family. Ever since that first call to me he had said he wanted to meet Hilda, and she, too, wanted to meet him.

She had seen him on PBS’s Bill Moyers Journal talking about his crisis of conscience over the family’s case. This was the moment Wendell had waited for to make amends, but with repentance comes anguish.

From inside the Sarkisyan house, we got word that Hilda’s husband and son were angry, and possibly not ready to meet Wendell. It was tense for a half hour or so until Wendell knocked on the door. We were waiting outside the home with two television cameras crews from Dateline NBC that I had arranged to capture the moment. We hoped the show would air before health care reform concluded so that the abuses in this case would be addressed by federal legislation.

When Hilda opened the door, the emotions ran very high. Over the next hour and a half,Wendell, Hilda, and the rest of the family were again and again reduced to tears. This was ground zero for American health insurance gone awry.

Potter had been instrumental in getting CIGNA to approve the treatment for Nataline, Hilda’s daughter, but his support came too late. Nataline died before she could get the transplant. As Hilda explained to Wendell, and later to the Dateline audience, she didn't even have an opportunity to say goodbye to Nataline. She was at a rally at CIGNA offices in Glendale fighting for her daughter’s treatment when her lawyer whispered in her ear that she had been approved. Wendell was watching the scene on TV and had worked to get the news to the family. But Nataline died just hours later, unable to hold out any longer for the surgery. Not long after, Wendell resigned.

At the Sarkisyans’ home, Wendell was confronted with posters from the demonstration and pictures of Nataline, and he visited the seventeen-year-old’s room. The transplant was the only chance she had had to save her life, and CIGNA delayed, probably because it knew that in the end it would face no real legal accountability for the death. That morning in Porter Ranch, Hilda and Wendell agreed to fight together for changes in the law. For me, the emotion of their meeting was like the splitting of an atom. At that time, health care reform was seen as very likely to pass and be signed into law in weeks. There was hope that what we didn’t get in that bill—real legal accountability for health insurers in cases like Nataline’s—we could get later.

After all, once the U.S. government and the Congress owned reform they would have to fix the holes and defects in it.

Hilda and Wendell made a pact that morning in Porter Ranch to combine their power to create change. They are just a few of the faces and stories of the movement who embody and express the authentic moral sentiments that two-thirds of Americans agree with. President Obama and members of Congress would have lost some control if they had turned the debate over to Wendell and Hilda, but they would have gained power too, power to dictate the terms of the debate. Hilda and Wendell’s message is this: Just because you’re insured doesn’t mean you’re covered.

That premise is still true under the new federal health care reform law. Patients with employer-paid health insurance have no more legal rights than Hilda Sarkisyan, who could not sue over Nataline's death because her husband's employer paid for her coverage. This needs to change and it will. The need for change comes from the heart of a mourning mother and speaks to the hearts of Americans.