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Week of 9.24.09

Transcript: Pre-existing Conditions

BRANCACCIO: In the senate, there's serious horse-trading going on - behind closed doors - in the effort to corral 60 votes to pass health care reform. What's at stake? Come with us away from those corridors of power to see health care as a real American family sees it; it's a system full of cracks with life altering consequences. Producer Brenda Breslauer and Senior Correspondent Maria Hinojosa have our report.

HINOJOSA: 8-year-old Sophie O'Reilly is a second grader here in Tulsa, Oklahoma. On this morning, she's accompanied by her best friend Breezey who's offering a little moral support. Because today Sophie will be giving her first big class presentation.

SOPHIE O'REILLY: What is asthma? Asthma is swollen airways and it makes it harder to breathe.

HINOJOSA: But this isn't just any school presentation... it's a window into Sophie's world. From the time she was 4, she's lived with chronic pulmonary disease.

SOPHIE O'REILLY: I have asthma sometimes it makes it hard to run as fast as other kids sometimes I wheeze and sometimes I just get tired.

HINOJOSA: In 2006, Sophie underwent major surgery to take out an entire lobe of her tiny lung.

SOPHIE O'REILLY: This is me after my lung surgery when I was five years old.

HINOJOSA: It's a tough concept for her classmates.

GIRL: How was your heart collapsing?

SOPHIE O'REILLY: It wasn't my heart it was my right middle lobe. In my lungs.

HINOJOSA: And they aren't the only ones with questions. Even Sophie's own doctors still don't know why her lungs are weaker than everyone else's. Keeping Sophie healthy has become a way of life for the O'Reilly family. To prevent a serious incident: inhalers, pills and oxygen monitors are all part of the daily routine—from early in the morning til late at night. Like many Americans, before their problems began the O'Reilly's never thought much about health insurance.

NATALIE O'REILLY: I say to people pretty frequently, because they're like "Oh, you know, my plan works great for me." And my answer to that is, insurance works really well until you need it. Until you really, truly need it.

HINOJOSA: Natalie O'Reilly is a social worker. Her husband Stephen plays guitar for a successful rock band and co-owns a small recording studio. Along with Sophie and younger brother Felix, the family lives here—in a house just three minutes from the hospital because access to medical care is their number one priority.

STEPHEN O'REILY: We've had to, you know, sort of keep a cap on our lives and how we—how we planned our lives based on this one factor, health care.

HINOJOSA: But it wasn't always this way.

NATHALIE O'REILLY: We had this healthy, beautiful little girl.

STEPHEN O'REILY: Nothing more than like a little cold. And, you know, I think she had a stomach—I think she had a stomach thing once. That's it.

HINOJOSA: Natalie and Stephen had been paying for the same health insurance policy for five years to cover their family. But then Natalie finished grad school, and got a job that offered a health plan. So she cancelled the old policy.

NATHALIE O'REILLY: Looking back, I wish we had been a lot more cautious.

HINOJOSA: The insurance plan through Natalie's work turned out to be too expensive, they say, so they decided to shop for a more affordable one on the independent market.

HINOJOSA: What was the mistake that you think you made from the time that you left your old insurance, and decided to get new insurance?

NATHALIE O'REILLY: We allowed for a gap between the policies. Our biggest mistake was setting that end date before we had something lined up. Solidly lined up.

HINOJOSA: During the gap between policies, Sophie who had recently had several bouts of pneumonia, got labeled by the insurance industry as having a "pre-existing condition;" two words that today are center stage in the debate over health care reform. Those two words also meant that Sophie's parents couldn't find a plan that would cover her for respiratory problems

STEPHEN O'REILY: Nat spent hours and hours looking for her, you know, looking at these—talk—talking to insurance companies, looking for possibilities. And we never found any. I thought it was just crass that—that she could be denied coverage. I mean, we're—we're willing to pay, you know?

HINOJOSA: But they were told if Sophie went a year without incident, she could get coverage. So her parents tried to keep her out of the doctor's office.

NATHALIE O'REILLY: So that there would be no paper trail for an insurance company to see that she had had this illness.

HINOJOSA: They were uninsured, still searching for a plan when Sophie woke up sick one day and began wheezing.

STEPHEN O'REILLY: The debate begins about, "well, what's the right thing to do here? Well, I mean, you know, we need to get her to the doctor. Is she doin' okay enough that we can not?"

NATHALIE O'REILLY: We just thought, "we've got the medication here. We're on the phone with the doctor. We just can't—we simply can't afford to have another strike against her by taking her to the doctor."

STEPHEN O'REILY: She's becoming more lethargic, then it's like, "okay, we need to get her to the doctor." Screw the insurance. Let's go.

HINOJOSA: They made it to the doctor's office but then Sophie took a turn for the worse.

NATHALIE O'REILLY: Sophie—started shaking violently, and she threw up, and she turned blue and limp. And the nurse said—"should I call 9-1-1, should I call an ambulance." And the doctor said, "there's not time to get one over here." We threw her in her car seat. Didn't strap her in. Just threw her in. And I drove around the corner to the hospital. And—it was just the most sickening feeling. I—I just—you know, the most sickening feeling. On the drive over there, she was not—talking. She wasn't alert. And I'm just yelling, "baby, please talk to me, please cry, please, please, please talk to me." And—they got her stabilized pretty quickly. But having to make that call to my husband and say, "this kid, who we tried to keep home today, we're in ICU right now."

STEPHEN O'REILY: I remember just going, "oh my God, I can't believe that I just pushed—that I just suggested that we—you know, that we keep her from the doctor over insurance."

NATHALIE O'REILLY: The guilt and the shame, you're terrified for your child. But the guilt and the shame was almost unbearable.

HINOJOSA: You almost didn't take her?

NATHALIE O'REILLY: We almost didn't take her. We almost tried to ride it out at home.

HINOJOSA: Because you didn't want the insurance companies to see that she was sick?

NATHALIE O'REILLY: Right. Right. The system as it stands is placing parents—and it's not just us. It's placing parents in a situation where you have to decide take her to the doctor and get that next strike against you, or keep her at home, and you're basically back against a wall to committing medical neglect.

HINOJOSA: But if you keep her at home, you might get—

NATHALIE O'REILLY: Insurance.

HINOJOSA: Health insurance?

NATHALIE O'REILLY: Right. Craziness. Craziness.

HINOJOSA: That incident marks the first time doctors put it all together, Sophie has a serious, recurring respiratory problem. And then... the hospital bills start to arrive.

NATHALIE O'REILLY: I'm working through the absolute horror and fear of seeing this tiny little body hooked to all these machines. And there's a piece in the back of my mind saying, "this is when we lose our house. We will lose our—we will lose our house over this."

HINOJOSA: But then, a reprieve. With Natalie working at a non-profit and Stephen just starting out as a music producer, their income is low enough to qualify for children's Medicaid in Oklahoma. It will cover Sophie and her brother Felix, even the trip to the emergency room.

STEPHEN O'REILLY: It saved us. I mean, at the time, it saved us. I mean, it probably saved us from losing our house.

HINOJOSA: The O'Reilly's are not unique when it comes the threat of losing a home because of medical costs. Five-year-old Cale is Felix O'Reilly's best friend and Cale's story also shows how tough it can be for families to get insured and stay that way. Last year, Cale's mom Merica met Natalie when they were both waiting to pick up their rowdy, pre-schoolers one afternoon. Cale normally has a tough time socializing with other kids, so Merica was surprised to see them getting along so well.

MERICA: I turned to Felix's mother Natalie and I said, "You don't know how rare this is. You know, you don't understand that we've never seen Cale do this before." And this is—this is my—the best thing that's happened all year.

HINOJOSA: Cale and Felix were playing make-believe, something Cale has a hard time doing. That's because Cale has autism, a developmental disability that now impacts one in one hundred fifty children in this country. Experts say it can be helped with early intervention.

So from the time that your son was born your husband had a full-time job and he had medical insurance?

MERICA: Yes.

HINOJOSA: And your understanding that what your son needed, he was gonna be covered?

MERICA: Uh-huh

HINOJOSA: And then what happened?

MERICA: Then autism happened. And I started reading online that children with autism aren't covered by insurance. If he had a stroke. If he had an accident he would of course be covered for that. But not for autism.

HINOJOSA: 15 states have a legal mandate requiring insurers to cover treatments for autism like speech and occupational therapy-but Oklahoma isn't one of them.

MERICA: How could autism cause you to not be covered for things like speech therapy or occupational therapy? Things that doctors have said, "This is what your child needs."

HINOJOSA: Some insurers say schools should provide the treatment, claiming these are educational, not medical problems. So in states without mandates, doctors have to be creative to ensure their patients get care. On insurance forms, they'll write that children have conditions like "encephalopathy," which is covered. But they try to avoid the word "autism."

MERICA: I think over the years you just learn to accept that that's the way the system works, "let's not say the A word."

HINOJOSA: With their doctors help, they were getting by, until March, when things suddenly fell apart. Cale's father Brad lost his job and the entire family lost their health insurance.

BRAD: You just hope nothing happens.

MERICA: It gets to the point where you say, "Oh my God. Don't jump on the sofa, because if you fall down and break an arm we could be bankrupt." And there are so many families in the exact same situation.

BRAD: It's mind boggling to me.

HINOJOSA:
Brad recently found a job at a bank. And while it comes with insurance, the cost is so high the family is worried about how they will be able to continue paying for it.

BRAD: I think there are a lot of people that are one surprise health care problem away from being underinsured or uninsured.

HINOJOSA: Dr. John Studebaker is Sophie's pediatrician at Oklahoma University's School of Medicine. He says a lot of people are not as well covered as they might think.

STUDEBAKER: They'll unfortunately find out that, you know, their—their company's health plan will drop them, or their company will decide to change health plans. One unexpected situation and—their lives change forever.

HINOJOSA: Studebaker says he's seen first hand how government programs like Medicaid can provide a safety net, as it has for families like the O'Reilly's. Medicaid pays 100% of Sophie's treatments, specialists, and hospitalizations. Her medicines, in an average month, cost five hundred dollars. All covered by Medicaid.

STEPHEN O'REILY: That has—that has made our lives functional. To keep their lives functional, and with Sophie's health on the line, the O'Reilly's have made a major decision: limit their income and stay poor enough to qualify for children's Medicaid.

NATHALIE O'REILLY: What we've had to do is really step back from our professional lives, and not take the promotions that we might usually take. Not take pay raises.

STEPHEN O'REILY: We don't mind paying for—for insurance. But we need a level of coverage that—that, you know, does not exclude her conditions.

NATHALIE O'REILLY: I will not ever let my child get that sick again, if I have anything to do about it. I will live on the street if I have to. But that's not happening again.

HINOJOSA: To stay on Medicaid, they've found themselves in some situations bordering on the absurd. Like the time Natalie started earning too much money and the kids were about to be disqualified.

NATHALIE O'REILLY: I called—a case manager—kind of frantically and said, "but I need this coverage. What can we do?" And she said, "What you would need to do is divorce your husband, because he earns less than you." "You would need to then give him full custody of the children, and then he could apply for state Medicaid. And he would be eligible because—since he earns less. But you would have—have to be out of the picture." You know, and I was a little bit horrified by that. I put ten good years into a marriage. I wasn't really willing to walk way for—from it. But she said that that was what other families had had to do.

HINOJOSA: So, someone from the children's Medicaid office here in Oklahoma actually said to you, "to keep your daughter covered, divorce your husband?"

NATHALIE O'REILLY: Absolutely. And, you know, it was just one—it was one of those defining moments when you realize how ridiculous—this thing you're caught up in is.

STEPHEN O'REILY: For us, absolutely not even a consideration. I mean, you know—know—we—we love being married. We want to be married.

HINOJOSA: The marriage survived but they've had to make other tough choices.

You are turning 45 today.

STEPHEN O'REILY: Yeah.

HINOJOSA: You don't have any health care.

STEPHEN O'REILY: No. I don't. This was the year that I had hoped to have insurance and to—to open a retirement account. A lotta my friends that—that aren't dealing with the same kind of issues we are, maybe they're actually, you know, planning for retirement or able to sorta organize themselves for the future better than—than we've been able to. And that's frustrating.

HINOJOSA: Does Natalie have health coverage?

STEPHEN O'REILY: No. No. Neither of us do.

NATHALIE O'REILLY: We're taking a calculated risk, thinking, "I hope we don't get in a car—wreck. I hope he doesn't have another kidney stone. I hope—that I don't find a lump in my breast." You know, grown up, organized people should not live without health insurance. We just can't afford it right now.

HINOJOSA: What does that say to you?

NATHALIE O'REILLY: It says to me that the system is broken for families who have chronically ill kids or kids with special needs.

HINOJOSA: In Washington, it's still unclear whether the broken health care system will be fixed, even though President Obama has made it the signature initiative of his presidency. In fact, solving cases like Sophie's was the first item on the list when the president made the case for health care reform.

PRESIDENT OBAMA: Under this plan, it will be against the law for insurance companies to deny you coverage because of a preexisting condition.

HINOJOSA: With Obama's urging, health care legislation did pass narrowly in the House but it's now mired in debate in the Senate. Not a single Republican senator has signed on, even though many support a provision that would make it illegal to deny coverage of pre-existing conditions.

COBURN: We need to make it to where if you have a preexisting illness you can still get coverage and not be penalized for it.

HINOJOSA: Republican Tom Coburn is the O'Reilly's Senator he's also Dr. Coburn, a practicing physician. And while he acknowledges the need for health care reform, he's against the proposed legislation.

COBURN: I can assure you that if we run a government-centric program we will bankrupt this nation for sure.

HINOJOSA: Are you prepared to stand in the way of a bill like—

SENATOR COBURN: If—if—

HINOJOSA: —that?

SENATOR COBURN: —it's government-centered, absolutely. The argument about the federal government bein' efficient is absolutely a joke. They're not efficient. They're highly inefficient. I wanna fix the problem but I don't wanna do it by jeopardizing the future of our kids and grandkids.

HINOJOSA: But what about the future for Sophie O'Reilly if there is no fix from Washington? She actually was denied covered because of a pre-existing condition.

SENATOR COBURN: Here's an emotional story of a very difficult situation and the answer is more government or fix it without more government? And my answer is we can fix that without more government. Since there is no answer through the government right now, the only option is for us to help one another. And that's what we oughta be about.

HINOJOSA: But that isn't always an option. Back in Tulsa, Sophie's grandparents, for example, would love to help out but they can't because of their own medical bills. Ken and Myra McLaughlin, both now in their sixties, thought they were prepared for any medical emergency. They had not one but two health insurance policies.

MYRA MCLAUGHLIN: We thought we had done everything right.

HINOJOSA: But they too made the mistake of switching insurance plans. Myra, who had previously had cancer, was labeled with a pre-existing condition. When she was diagnosed with cancer a second time, the new policy didn't cover many of her treatments.

MYRA MCLAUGHLIN: So—we have a lot of money that we owe.

HINOJOSA: A lot could be an understatement.

KEN MCLOUGHLIN: It's—it's only $109,843.62.

MYRA MCLOUGHLIN: I mean, there's a choice we—we sell the house, or we declare bankruptcy, and of course, Ken doesn't agree with either of those—situations, but that's the only thing I can see, because, in h—$110,000 isn't gonna happen in my lifetime.

HINOJOSA: This tight knit family has had some tough years. But now, some hope.

STEPHEN O'REILLY:
What happens over the next few months in Congress—you know, they duke this out—is gonna—you know, is gonna form, you know—a big part of how we can move forward. A strange time, you know, and a nerve-wracking time.

HINOJOSA: For Sophie's parents, the question of how they will move forward is never far from their minds as watch their little girl confront this very big disease.

STEPHEN O'REILLY: The future is, I think, the—the thing that I worry about the most. Like, as—as she gets to—as she gets older and begins to move into her own life more 'cause we don't know where all of this is headed. We don't know where—you know, where her sickness is going. I know we'll take care of her somehow. I know she'll be taken care of. That part of it will be no matter what. And I just want her to be happy and know she's loved. That's all.

BRANCACCIO: Many Americans get the shock of their lives when they realize that having medical coverage doesn't always mean you're covered for medical treatment. Use our interactive map to see more stories of Americans whose health care coverage has fallen short—with some dramatic consequences. Go to pbs.org and find the now page with the map. Before we leave you, I want to share with you something: Public television needs your support and it needs it now. Reporters like us could not bring you the range and depth of stories we do without your contributions to your local public television station... so please give generously. And that's it for NOW. I'm David Brancaccio. We'll see you next week.

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