Video: Critical Condition: Watch full show

By Ann Curry
Dateline NBC
updated 1/24/2010 6:17:46 PM ET 2010-01-24T23:17:46
transcript

This aired on Dateline NBC on Sunday, Jan. 24, 2010. Watch related web-exclusive videos here.

Pat Gannon is fighting a war on two fronts. One is the daily struggle against his son Patrick Jr.'s debilitating illness; the other is a frustrating battle to get him the care his family says he needs.

Pat Gannon: I don’t want to miss my son’s therapy. We're overwhelmed with fighting with the insurance company. I'm just so confused. A lot of it is calling people who are in the business of saying no. We don't want anything that we don't have coming. We don't want anything that he hasn't worked for his whole life. He had health insurance. And now when he needs it the most - we want just the chance.

The Gannon's odyssey through the American health care system began late one November night. Their son had been rushed to an emergency room.

Pat Gannon: Patrick was on a ventilator. And he was gravely ill. I immediately called Good Samaritan Hospital, San Jose and I found the treating physician in the emergency room.

Dr. Harish Murthy, Good Samaritan Hospital: I thought odds of his survival were very low.  I really didn’t expect him to make it.

Patrick Gannon Jr., an easy-going IT tech who was about to become a father at 41, had suffered a massive heart attack. Patrick had flat-lined, was revived, and now was clinging to life.

Pat Gannon: He told me he probably was going to pass away. (holding back tears).

The hospital was a nine-hour drive north.

Pat Gannon: I kept telling myself, "This can't happen. He's going to be alive when we get there. He can't die before we get there."

The Gannons arrived to find Patrick in a coma with no brain function, but still alive.

Pat Gannon: Just about every device was hooked up to him. When they opened his eyes to check his pupils, I saw a death mask there. So, I knew it was bad.

The delicate work of keeping Patrick alive was underway. A team of emergency-room specialists -- surgeons, neurologists, cardiologists -- tended to him around the clock. No one was thinking about it at the time, but the several weeks of life-saving care came with an enormous price tag -- a million dollars and rising. But Patrick had insurance....and Blue Shield of California picked up most of the tab for his emergency treatment.

Not only did Patrick defy the odds and survive, he awoke from his coma and progressed better than expected. 

Pat Gannon: He was eating and speaking. He actually stood up by the bedside with two therapists at Good Samaritan Hospital.

Dr. Harish Murthy, Director of Intensive Care Unit: I remember running back to the ICU after that and telling some of the ICU nurses, you know, "You need to go up and see Patrick because he's doing amazingly well." 

But Patrick was far from out of the woods. The young man who'd once helped build houses for Habitat for Humanity would now need intensive and expensive rehabilitation to have a chance at a normal life. His hospital doctors wanted to move him to an acute rehab facility right away for a period of aggressive therapy.

Dr. Harish Murthy: The quicker we can get patients who are medically stable to an acute rehab facility, the better chance they have of making a neurologic and physical recovery.

Acute rehab would include intensive physical and brain therapy.  But the insurer, Blue Shield, approved a less expensive treatment in what's called a skilled nursing care facility.  Skilled nursing would provide Patrick some therapy, but it would be less aggressive and would not include neurological rehab.

Pat Gannon: To go to an advanced acute brain injury hospital.

And from that point forward, the Gannons would become front-line combatants in a war that plays itself out in homes, hospitals and doctor offices across America each day. 

Regina Herzlinger: Most people say, I love my insurance. That's because most people are healthy and they don’t use their health insurance.

Regina Herzlinger is a Harvard Business School economist who has spent her career researching healthcare systems around the world. She says the American system is fraught with obstacles that most patients are unaware of until they need care the most.

Regina Herzlinger: Health insurance is not so good for sick people. Great for healthy people. Isn’t that an irony.

Ann Curry, Dateline NBC correspondent: When you or someone you love gets sick, you assume that it is going to be you and your doctor who is gonna make the decision about the course of your care.

Regina Herzlinger: Ha! Hardly so. If you talk to doctors, they say, I cannot practice medicine anymore because there's a third person at the table. It's the insurer.

The question of who decides what's best for a patient is an ongoing source of contention. Insurance companies-- and their of maze of rules and regulations, delays and denials-- can wear down doctors, not to mention people in crisis. It is a system that can breed anger and distrust.

Regina Herzlinger: It's a battle and it should not have to be a battle.

Now, families confront life and death decisions involving the people they love. This woman is fighting with her insurer while her husband waits for treatment that could extend his life.

Debbie Crusoe: This is urgent.  We don't have time on our side.  Make a decision! 

And this mother is demanding answers after the worst possible outcome...

Hilda Sarkisyan: Deny, deny, deny.

But it may not be that simple for the patient OR for the insurer. 

Regina Herzlinger: What is covered if something is questionable, if it's not standard medical care? Those decisions are not black and white kinds of decisions.

As for the Gannons, Patrick Jr. had survived his heart attack, but the second battle was just beginning.

Pat Gannon: Oh, I had no idea what I was in for. He's a wonderful man and wonderful person. Got a heart of gold.  Doesn't have a mean bone in his body. I just gotta win for him.  He deserves it.

Patrick and Leslie Gannon had been preparing for retirement--- a house in Arizona, time to spend with grandkids. That all changed when their son suffered a massive heart attack followed by other life-threatening problems.

Leslie Gannon: They said he really should never have made it through the night:

But Patrick Jr. had defied the odds.  He had awoken from a coma, was regaining brain function... on the verge of taking steps. Remember, though his insurer Blue Shield did cover his emergency care, a battle was beginning over the next phase of treatment -- expensive rehabilitation therapy.

Dr. Harish Murthy:          They kept denying things. I won't say they outright lied, but clearly the information that was given on one day was inaccurate the next day. For three months all I did for Patrick was to help his dad deal with the insurance companies.

The rehab center his hospital team was recommending would cost about 4,000 dollars a day-- about twice as as much as the skilled nursing facility the insurance company was willing to pay for. The Gannons also wanted Patrick moved closer to their home-- something his doctors felt would speed his recovery.

Dr. Harish Murthy:          I don't think anybody can--disagree that the right thing for Patrick was acute rehab close to his family.

The family filed a complaint with state insurance regulators. Meanwhile, Patrick was left in a hospital that couldn't provide the therapy his doctors said he needed.  After three months of bureaucratic wrangling, Blue Shield approved two months of the acute rehab that the family had wanted. But Patrick's doctor questioned whether it was too little, too late.

Dr. Harish Murthy: I gotta wonder if he would-- have been able to walk sooner or walk at all if he had gotten to acute rehab earlier. 

We asked Blue Shield of California about the Gannon's case, but privacy laws prohibit an insurance company from discussing a patient without a release. Gannon's father refused to sign Blue Shield's release, and the company refused to accept a release Gannon prepared. Instead, the company sent us this statement :

Unfortunately, federal privacy laws prevent us from discussing this situation. From what we have been told by Dateline, it is clear that viewers will not receive a fair and accurate depiction of the facts. We regret that we cannot tell our side of the story.

Andrew Rubin is an expert on the business side of medicine.  He is not a medical doctor, but serves as health care administrator at NYU's Langone Medical Center.

He also hosts a radio program that steers listeners around the minefields of the American health care system. 

Andrew Rubin: There will always be people who are unhappy with the insurance decisions that are made on their behalf. They are very difficult and emotional decisions.

Rubin looked at medical and hospital records provided by the Gannon family.

He says the case was mismanaged from the start---  and that poor communication among the hospital, family, and Blue Shield made matters worse.

Andrew Rubin: What Patrick Gannon's case shows is that there are times when the process of providing insurance for individuals fails.

Rubin says delays can have medical repercussions--- sometimes a "delayed decision" equals a "denied decision" if the treatment comes too late..

Andrew Rubin: This case took too long to be decided. The outcome was not good for Patrick Junior.

After the two months of acute rehab, Patrick could have gone to a nursing home that would be paid for by the State of California, but his parents thought they could provide better care for Patrick at home.  That decision meant cost would be shared by Blue Shield and the Gannons.

The couple is also caring for Patrick's daughter Emma, who was born to his ex-girlfriend a month after the heart attack.

Leslie Gannon: But you want dad up.  This is your motivation. 

And their struggles with Blue Shield of California, they say, continue.

Leslie Gannon: I would love it if someone from blue shield would come out.  I really would.  I would love for them to come out here to this house.

One source of contention is Patrick's bed, paid for in part by Blue Shield. Patrick's therapist says it's too small, ill-equipped, and doing him harm. They consider paying for a better bed with their own money.

Leslie Gannon: It-- $6,000 a month?  To rent? I mean, if it's $6,000 to rent, god, what is it to purchase? 

Blue Shield continues to pay some of Patrick's medical expenses, but co-pays and out-of-pocket expenses have left the Gannons financially devastated. 

Leslie Gannon: It’s about 3-4 hundred a month for his medication. The gloves are like 10 bucks a box. These are $82 for a box of 70 of 'em. I just spent $400, getting more things in.

The house the Gannons bought for retirement has been foreclosed.  They now live in a rental that they've equipped like a hospital. The family savings from Patrick Sr.'s years as a contractor are all but depleted. Credit cards -- their stop gap.

Pat Gannon: We're always on guard to make sure the card works.

What's more, too young to qualify for Medicare, the Gannons say they can no longer afford their own health care coverage.

Leslie Gannon: God, if one of us gets sick, what do we do now? 'Cause we don't have anything.

Patrick goes to physical, speech and occupational therapy at a nearby hospital-- paid for by Blue Shield. But the family says they can spend hours on the phone each day trying to get approval additional sessions his therapist says he needs. 

Pat Gannon: It's no longer a denial. It's you just didn't get the therapies you asked for, which in one case was 24. We got 12.

They take what they get and appeal the rest.

Pat Gannon: He is deteriorating from a muscle structure point of view. 

At the end of the day, exhaustion, but little sleep.

Pat Gannon: I always wanna be close to him, to-- just in case. And this is the closest spot where I can lay down and sleep. I'm tired. You're always tired. Outside of that, I have my son, that's what's important. That he's alive. I didn't want to lose him. That would be more than I could have handled. We're taking care of our son.  We're not asking Blue Shield to help us do that.  We're doin' all the work-- th-- the heavy work. We just want them to lift up-- live up to their end of the bargain. That's what we want.

The Gannons say they will not let frustration give way to defeat. But what happens when there isn't time to fight? 

Debbie Crusoe: This is urgent.  We don't have time on our side.  Make a decision! 

Who pays the price?

Jamie Court: If you need treatment that comes with a six-figure price tag on your sick bed, on your death bed, you or your family members are gonna have to fight for it.

Debbie Crusoe: It's funny, you-- you work for an employer, they give you your insurance. What are your choices?  You either take it or you don't take it.

Debbie and Rick Crusoe never paid much attention to the health care reform debate. Like many Americans, they had their insurance policy, they figured they were covered.

Debbie Crusoe: You don't really know what's in the policy until you need it.  And then you find out all the loopholes.  You know, it's great policy, but if you're sick, forget it.

When the unthinkable happened to them, the Crusoes discovered their coverage wasn't what they thought it was. Rick Crusoe was a firefighter in the City of Pembroke Pines, Florida, where he lived with his wife, Debbie, for 32 years.

Debbie Crusoe: I've got plaques for him and everything. Not only did he win for firefighter of the year, he won firefighter of South Florida. This is when he-- went to a plane crash.

Rick Crusoe took plenty of risks in the line of duty, but he retired without ever much using the health care coverage provided by the city.

Debbie Crusoe: He would go for checkups once a year. And he was always really healthy.

The Crusoes assumed that as a firefighter, Rick's insurance would cover just about any medical problem. But as the price of medical care skyrockets, consumer advocates, like Jamie Court of Consumer Watchdog, say insurers are cutting costs, often in unseen ways.

Jamie Court: I think most people don't realize that just because you have insurance doesn't mean that you're gonna be covered. They know there's a lot of fine print. But they really feel like if you're really sick that fine print's gonna support you. 

As it does for many people, 57-year-old Rick Crusoe's emergency came with little warning.

Debbie Crusoe: He woke up at 3:00 in the morning, just in excruciating pain.  So, we went to the emergency room. They did a cat scan.  And they found a mass.

What doctors first thought was bladder cancer turned into a more ominous diagnosis: a rare form of cancer of the connective tissue called sarcoma.

Debbie Crusoe: And sarcoma is one that spreads to-- spreads very, very rapidly.  And once it gets in your system it spreads like wildfire. 

Rick began chemo immediately-- the start of cancer treatments that would cost 400,000 dollars--   All covered by insurance. But he wasn't getting better. So, at their own expense, he and his family flew to the M.D. Anderson Cancer Center in Houston, one of the most advanced cancer treatment centers in the country. And they found hope. Rick qualified for an experimental drug trial.

Dr. Joseph Ludwig: The likelihood that he was gonna respond to that is-- is in the order of about 10 or 15 percent. And by-- by respond, I mean, the likelihood that his tumor was going to-- stay under control or shrink.

Debbie Crusoe: So, we finally get hope that, "Yes, there's a drug." And does it cure patient?  "No, but we have patients that have been on it two years and they're living a quality life.”

Dr. Joseph Ludwig: Clearly the goal with-- with prolonging his survival is to get him to that next available therapy that could result in a cure. 

The trial would be paid for by the drug's manufacturer--- insurance didn't need to be involved with that. But the Crusoes did need their insurer to confirm that it would cover any post-treatment complications-- a formality, they thought. They were wrong.

Debbie Crusoe: They came in and said to us, "You can't do it, the city put a halt to it."

The city had an insurer, United Healthcare, to manage its benefits plan, a plan that clearly stated Rick Crusoe was not covered for the treatment he sought. But the ultimate decision on changes in policy rested with the city, which declined NBC's request for comment. The cruel irony, if Rick was a little older, Medicare would have paid for it.

Debbie Crusoe: I told M.D. Anderson, "I will fundraise.  I will pay for it.  I will mortgage my house.  I'll live in an apartment.  I don't need all this.” They said, "We can't allow you to do that, because what you're not realizing is it'll wipe you out.”

Debbie pleaded with the city to reconsider.

Debbie Crusoe: I kept saying to them, "This is urgent.  We don't have time on our side.  Make a decision."

For help, the family turned to the Virginia-based Patient Advocate Foundation, a non-profit that uses a team of specialists to give free assistance to those with health care issues. They're asking the city's human resources director to make an exception, something insurance companies refer to as a "compassionate allowance."

Margie Griffin, Patient Advocate Foundation: I've probably had over 20 conversations with the H.R. director-- back and forth. I actually-- implored to him that at least speak with the physician first.

Weeks pass while they wait for a decision.

Margie Griffin: So, we're gonna give him a call today. Good morning, this is Margie Griffin, Patient Advocate Foundation. Hi, i'm d-- doing just fine, i was g-- just getting ready to call the family in just a few minutes. Okay. Okay. Okay, thank you very much. 

It's good news-- the city has changed its mind.

Margie Griffin: So i'm gonna give-- the family a call now.  This is-- yay.  This is-- one of the-- the best part of my job.

Margie Griffin: Yes, Debbie? Good morning, how are you? Okay. The city-- is willing to make a change in the  coverage-- and allow up to $250,000 for standard care related to clinical trial.

Debbie Crusoe: So now they're gonna cover it?

Margie Griffin: Yes.

Debbie Crusoe: I'm very happy.  And I thank everybody. I mean, and you know what, Margie, thank you is not an adequate word. 

But there's a problem. A month has passed since Rick Crusoe was first denied coverage, an eternity for someone in his condition. Can he get the treatment in time?

Margie Griffin: What concerns me is that the patient's health is deteriorating. 

A rare form of cancer has left Rick Crusoe and his family only one hope-- a drug trial that might prolong his life. But the treatment wasn't covered, and it took a month to convince the city where he'd worked as a firefighter -- to make an exception.

During that month, he got sicker, and sicker. Now---in his weakened condition, Rick no longer qualifies for the drug trial. Long days are spent in the hospital trying to get him stronger-- hoping he might requalify. It's an agonizing race against time.

Debbie Crusoe (bedside on phone with doctor): They approved up to $250,000.  So, but-- the thing is, Dr. Deweck, you and i both know, is it a little bit too late?

Friends visit. A grand-daughter takes her first uncertain steps.

Debbie Crusoe: He said, "I don't want to die because I want to see my grandchildren grow up."

Some nights, Debbie sleeps at the hospital. Other nights, she reluctantly drives home.

Debbie Crusoe: Because as tired as I am, I don't want to leave him.  Because you don't know from one minute to the next what's gonna happen.  And things haven't been going well.  And if god takes him from me, I want to be there holding his hand.  I don't want him to go by himself.  And I just don't give up on the hope.

But at the hospital the next morning, it's clear that hope for prolonging his life with a trial drug is quickly fading.

Debbie Crusoe: The nurse came in to try to wake him up to give him his medicine, and he just wouldn't respond.  So, she called another nurse. So, they said he needed to go to ICU. And the next thing I know, people come running in.  They come running in with this red cart.  And they called it a crash cart.  It just freaked me out.  It just totally freaked me out.

His condition is dire.

Debbie Crusoe: I can't make a decision.  I beg you, god, please don't put me in that predicament.  I don't want to make that decision of whether to put him on life support.  I don't want to make that decision.

Then, what they think may be their last good-byes.

Vikki: Dad. Dad, I love you. With all my heart.  I love you.  You know you're my hero.  You are my hero forever and ever.

Debbie Crusoe: You are the love of my life, Rick.  The love of my life.  There is never ever anyone like you in this whole world.  Can you hear me, baby?

Rick Crusoe: Yes.

Vikki: Yes, he can hear you.

Nurse: We need to take care of him, guys.  I'm sorry.

Rick Crusoe passed away in October with his family by his side.

Andrew Rubin: There will always be controversy when it comes to life or death decisions.

Healthcare expert Andrew Rubin says the hole in the Crusoe's coverage, and the month it took to plead with the city, made a painful time even worse. But, he says, the sad truth is that paying for every life-extending treatment for every patient is not realistic.

Andrew Rubin: The costs to the medical system are highest at the end of life.  And we often don't get better outcomes when we spend more money on end of life care.

And he says no reform will eliminate the controversy that comes with deciding when enough is enough.

Andrew Rubin: We are inherently wired to hang on and do whatever can to save ourselves. Ultimately, unless we're willing to pay for that individually, the insurance company is going to be making that decision for us.

Susan Pisano: In the overwhelming majority of cases, things go smoothly. 

Susan Pisano is with America's Health Insurance Plans, an industry trade group. She says that, for the most part, insurers are carrying out the directives of employers who foot the bill for most of the nation's healthcare. And with the price of medical care soaring, it makes economic sense to try to keep costs down. But when there's a dispute, the industry says it supports streamlining the appeals process.

Susan Pisano: What happens in the close calls? It's understandable that if you have a service that you want and think can benefit you, you want it to be covered.

But this former insurance industry insider is speaking out about a system he says is motivated by just one thing: The bottom line.

Wendell Potter: They're gonna find a way to make money.  And the way they're gonna find a way to make money is to avoid paying claims.

It's just days before Christmas and Hilda Sarkisyan is out shopping, getting ready to host dozens of guests at her Southern California home. But it's not a holiday party the family is throwing...

They are preparing for a memorial service that will mark the 2nd anniversary of their daughter's death.

Hilda Saarkisyan: Everybody's getting ready for Christmas Eve, the-- Christmas day.  And here I am shopping for her memorial.  (cries)  And it really bothers me so much.

Nataline Sarkisyan died at 17, after a three-year battle with leukemia. Her family's grief is compounded by a large dose of anger: Their fury aimed at an insurance company they say had a role in hastening Nataline's death.

Hilda Sarkisyan: Nataline was another file they just shred.

Nataline was first diagnosed with leukemia at 14.

Hilda Sarkisyan: She started having headaches.  She started losing weight. 

Rounds of chemotherapy followed. And when the chemo didn't work, Nataline's doctors suggested a more aggressive therapy -- a bone marrow transplant.

All of it was paid for by CIGNA and the insurance policy purchased through her father's job. A bone marrow transplant alone can cost as much as 700,000 dollars.

But after the procedure, a complication. Nataline's liver was failing. Her medical team at UCLA said an emergency organ transplant was her only hope.

Hilda Sarkisyan: The doctors are telling you that "Your daughter needs-- a liver transplant. We have a liver.  We don't have clearance." 

CIGNA denied the transplant-- which would cost a half million dollars or more.  The company had hired two doctors who determined that the procedure would be ineffective and unproven in Nataline's case.

Nataline's doctors said a new liver had a 65 percent chance of extending her life by many months-- time they could use to keep fighting her leukemia. But the Sarkisyans were finding out that insurance companies don't usually cover medical treatments that are considered unconventional or unproven.

Andrew Rubin: There will always be denials.  And I'm gonna say something very controversial.  Denials are okay.  It's-- it's a mechanism to keep the insurance and the consumer in check. The problem with the denial is healthcare is not always black and white.

To a family facing the loss of a daughter, it seemed there was only one right answer.

They appealed while precious days passed. Then more than two weeks.

Hilda Sarkisyan: They just said, "It's experimental.  We're not gonna approve it.  Sorry.”

But Nataline's mother wasn't taking no for an answer. The family took their case public-- calling the local media, and staging a rally outside Cigna's Glendale, California offices.

Hilda Sarkisyan: The reason I'm here today is to fight the insurance company CIGNA for denial of my daughter's coverage for the liver transplant. I need my daughter back. CIGNA is wrong.

Joining the fight was the California Nurses Association, a labor and lobby group that took up Nataline's cause.

Liz Jacobs, R.N.: We came with our banners, and we-- we had placards and we had signs. We ended up occupying the lobby of CIGNA headquarters.

The family's pressure tactics, it seemed, were working.

Wendell Potter: It got the attention at the highest level of the corporation.

Few were in a better position to know what was going on inside CIGNA'S executive suites than Wendell Potter. At the time, he was the company's chief corporate spokesman. And this was a P.R nightmare.

Wendell Potter: One of the most difficult that i'd ever dealt with. 

While the family was protesting, CIGNA had a change of heart. The company agreed to pay for the transplant as a compassionate exception.

Hilda Sarkisyan: She came and whispered in my ear. "Hilda, they just reversed their decision.  Nataline's gonna get her liver."  I was so happy, so excited, i was screaming.

But the struggle was far from over. Nataline's condition was deteriorating. The family left CIGNA and rushed to the hospital. Even though the transplant had been approved, it was too late. Nataline died just hours later.

Hilda Sarkisyan: If something had happened to her after the liver transplant, you would say, "It's not meant to be. Okay, we tried our best." But no, they did not give us a chance.

Nataline's death was a turning point in the life if of CIGNA executive Wendell Potter.

Wendell Potter: It was devastating for me.  I remember when I heard the news, just closing the door and wanting to be alone for a while.

Three weeks after Nataline's death, Potter decided to leave his job, no longer able to defend an industry that he says puts profit before patients.

Wendell Potter: I felt that as I was climbing the corporate ladder that somewhere along the way I misplaced my moral compass. It's the profit motive that-- really drives these companies. 

Potter is now a whistleblower of sorts, calling for insurance reform throughout the national healthcare debate. He has taken his message to the media. And to lawmakers in Washington.

Wendell Potter: There's such power concentrated in the hands of now seven very large for-profit insurance companies.

He says the lesson from Nataline's case is that insurance is a business like any other-- with  companies beholden to shareholders.  When it comes to expensive treatment decisions, he says insurers have an undeniable conflict of interest.

Wendell Potter: Often there is a corporate bureaucrat who stands between a patient and his or her doctor making decisions.

Potter says investors keep close tabs on the profit margins at insurance companies. In fact, in Wall Street jargon money spent on patient care is called a "loss."

Wendell Potter: The medical loss ratio is a measure of how much of every premium dollar that these companies "lose "-- paying medical claims.

CIGNA said in a statement to Dateline that it "makes all coverage determinations on the basis of the best available medical evidence, regardless of cost. CIGNA... had no stake in the coverage decision."

The company points out that in Nataline's case, it was acting as an administer for Mr. Sarkysian's employer, and the employer would ultimately pay for the medical costs.  But Potter says the contracts between employers and insurers often contain incentives for keeping the cost of claims low. We asked CIGNA if it had any such financial incentives and requested details about its agreement with Mr. Sarkysian's employer, but the company declined to comment.

Susan Pisano: There's not a benefit to a health insurer in denying claims that should be paid.

The health insurance industry trade group says that nearly 98 percent of the time, claims are paid quickly-- And that's good for the bottom line.

Susan Pisano: For one thing, claims-- payment is highly regulated.  For another thing, employers have choices.  They can take their business from Insurer A to Insurer B. Our companies really compete like mad.

Now, the Sarkisyans are determined not to let Nataline's story fade away. They're taking up the cause of reform in her name.

Two years after her death, Nataline Sarkisyan's bedroom is largely untouched. The only change, some painful mementos of her parents' battle with their insurance company.

Hilda Sarkisyan: When I come to this room I do cry.  I miss her.  Sometimes it helps me heal.  But I wish she was here. 

Although their insurance company CIGNA ultimately agreed to pay for a last-ditch transplant that might have prolonged Nataline's life-- the decision came too late.

Hilda Sarkisyan: They kept on dely-- denying, denying, denying, and delaying the procedure for my daughter.  She could have gotten that liver.

Many months later, the Sarkisyan's outrage hadn't diminished.

Hilda Sarkisyan: I want to ask them why they did this. I want to know why.

They flew from California to the Philadelphia headquarters of CIGNA Insurance. Accompanied by activists from the California Nurses Association, they wanted answers from the CEO.

Hilda Sarkisyan to security guard: I need to see Edward Hanway.

Guard: He's not available.

Hilda Sarkisyan: Why not? This is our life.

Mr. Sarkisyan: This is my daughter. You guys denied her liver transplant, she died.

After being stopped at security, a company spokesperson came to the lobby.

Hilda Sarkisyan: I'm Hilda Sarkisyan, Nataline Sarkisyan's mom.

Mr. Sarkisyan: So you guys have to tell your people when you're selling the insurance. You have insurance, but you're not covered.

Hilda Sarkisyan: I'm here all the way from California to give you a message and I want to see the CEO. Who is he to decide? Who is he to make a decision?

Chris: I know exactly how you feel.

Hilda Sarkisyan: Okay.

Chris: And it was horrible that it happened.

Hilda Sarkisyan: That's all you can say. That's it? Are you guys sorry for this?

Chris: I am not familiar with all the details of your case.

The Sarkisyans left without seeing the CEO and without the answers they'd hoped for.

What they got was a crude gesture from a CIGNA employee who looked down on the confrontation from an upper floor.

Hilda Sarkisyan: I said, "Do you work for CIGNA?" He gave me the finger-- both fingers to a mother like me.  So what does that tell you? 

For that gesture, CIGNA sent a letter of apology the Sarkisyans.  But the family has little other recourse against the company. After Nataline died, the family sued CIGNA, but the case was thrown out before it was even heard. The Sarkisyans found out that in most cases, if you get your insurance through your job, you can't sue for damages.

Jamie Court, consumer advocate: In America in fact you can sue for most things.  You can sue for some ridiculous things.  But you can't sue when a loved one dies because an insurer didn't give them the care that could have kept them alive.

Changing the law in order to hold insurers more accountable for treatment decisions has become a mission for the Sarkisyan family.

In their fight for reform, they're about to meet an unlikely ally: Wendell Potter, the CIGNA executive who resigned in the wake of Nataline’s death.

Wendell Potter: We're not talking about evil people. I say that the system is evil.

Now, Potter has accepted an invitation-- arranged by consumer advacates-- to the Sarkisyans’ home.

On the way, he collects his thoughts for what may be a difficult meeting.

Wendell Potter: I just wanna tell her that Nataline certainly didn't die in vain. You know, it may be helpful to both of us in some way to meet and talk.

Wendell Potter, approaching  door: Mrs. Sarkisyan?  Hi.  I'm Wendell Potter.

Hilda Sarkisyan: Hello.

Wendell Potter: How are you?  Thank you very much for inviting me into your home.

Once inside, Potter searches for words.

Wendell Potter: I can't imagine the anger and the hurt. The only thing i may be able to say is that Nataline’s life was so essential. She's changed my life. And it was really because of Nataline that I decided to leave my job and-- ultimately become a real advocate for reform. 

The family wants to talk about the day that haunts them: the joy of CIGNA's approval... quickly followed by despair.  Too little, too late.

Hilda Sarkisyan: Why do they have to wait until that moment?  Did you know that I did not know my daughter was gonna die that day?  I did not say goodbye to my daughter.  Did you know that?

Wendell Potter: I did not know that.

Hilda Sarkisyan: I did not know she was gonna die.

Wendell Potter: I can't speak for anyone but myself. But I was hopeful.  I—I was really hopeful that-- that it-- it could-- it could happen in time to save Nataline's life.

The family shares their memories of Nataline--  A poem that she wrote during her battle with cancer.  It moves Potter to tears.

Hilda Sarkisyan: So you know how it feels.  (crying)

Their meeting ends with a visit to Nataline's room... Video: From CIGNA executive to health care advocate

Wendell Potter: What a beautiful girl she was.

...and a promise on both sides to work together for reform.

Wendell Potter: I'd be honored if we could somehow work together and try to help change things.

When it comes to healthcare reform, the debate is often loud and abstract. But for these three families, it has been deeply personal... and urgently real.

Regina Herzlinger: You've pointed out what is the tip of the big iceberg.

Regina Herzlinger, the Harvard economist, says most of us have little choice about the health insurance we get, and even less information.

Regina Herzlinger: We should have precise information that tells us if you get sick, here is how we will treat you. 

She suggests a relatively simple solution: a consumer protection agency dedicated to rating insurance companies and clarifying their policies.

Regina Herzlinger: I know everything about my car. I know how safe it is, how fuel efficient it is. Why do I know that, 'cause the federal government says you've got to publish that information. Insurance companies have to open up and inform people how they make these life and death decisions. 

Ann Curry: So, you're saying that we're not looking at the right thing?

Regina Herzlinger: Transparency is always a great solution. 

Unless-- or until-- the system changes, Professor Herzlinger says many families will have to keep fighting at the worst time of their lives. She says your best ally is a doctor or caregiver.

Regina Herzlinger: They want to help you.  They will go to the wall for you. 

She says rallying attention from the media is extreme, but sometimes necessary. And it's always a good idea to find an outside advocate to fight on your behalf, like Debbie Crusoe did.

Regina Herzlinger: If you are in this situation, you have to get very aggressive.

Even now, Debbie Crusoe is not giving up. She's pushing her city to change its policy so that all firefighters can take advantage of experimental drugs.

Debbie Crusoe: I said ya know, change it. This could happen to anyone.

And the Gannons have no alternative but to keep moving forward, one day at a time, with all they have.

Pat Gannon: That's my secret weapon, that I am determined and I will never stop.

© 2013 MSNBC Interactive. Reprints

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