STEVE INSKEEP, host:
It's Morning Edition from NPR News. I'm Steve Inskeep. Today in "Your Health," what happens when your health insurance is not enough? You may know cystic fibrosis as a killer of teens and young adults, but that is not necessarily true anymore. The average lifespan is now into the late 30s if you have this disease. Medicines and treatments keep improving, so life expectancy keeps going up, which leads to a problem. Ninety-nine percent of people with cystic fibrosis do have health insurance. But more and more often, it does not pay for enough of those new lifesaving treatments. NPR's Joseph Shapiro explains.
JOSEPH SHAPIRO: On a long, green field behind a school in Maine, the girls' field hockey team ends practice with a cheer.
Unidentified Cheerleaders: V-I-K-I-N-G-S.
SHAPIRO: This is Oxford Hills Middle School, home of the Vikings.
Unidentified Cheerleaders: V-I-K-I-N-G-S.
SHAPIRO: Cindy Fowler has driven up in her SUV. She's looking for her daughter Cailyn who's on the cross-country team.
Ms. CINDY FOWLER: Hi, Cai. Were you running?
Ms. CAILYN FOWLER: Yeah.
Ms. CINDY FOWLER: Yeah? Did you feel OK when you were running? I mean, you didn't feel all wheezy?
Ms. CAILYN FOWLER: No. Oh, a little bit at the end.
Ms. CINDY FOWLER: A little bit at the end. Great.
SHAPIRO: Cailyn Fowler is 13. She's small and pretty, with sparkling blue eyes. Cailyn has cystic fibrosis. A defective gene causes her body to make very thick and sticky mucus. It clogs her lungs and causes lung infections. Still, Cailyn goes to school, runs track. She's got a cute boyfriend. She leads a pretty normal life. It all depends on her getting good health care. Cailyn's father gets health insurance through his maintenance job at a propane gas company. That insurance pays for most of Cailyn's care. But every year, the Fowlers say, there's still as much as $50,000 or more that's not covered by the family's health insurance - bills for Cailyn's medications, medical equipment, and multiple trips to the hospital. The state Medicaid program pays for all of that, at least for now.
Ms. CINDY FOWLER: So where's all your teammates?
Ms. CAILYN FOWLER: In there.
Ms. CINDY FOWLER: Oh.
SHAPIRO: Cindy Fowler notices that Cailyn's teammates are already in the locker room. But her daughter hasn't joined them.
Ms. CAILYN FOWLER: They're getting dressed.
Ms. CINDY FOWLER: They're all getting dressed?
Ms. CAILYN FOWLER: I don't want to get dressed there because I have pants.
Ms. CINDY FOWLER: Because what?
Ms. CAILYN FOWLER: I have pants.
Ms. CINDY FOWLER: Oh, OK.
SHAPIRO: It's common for a 13-year-old to feel awkward changing clothes in a locker room. Cailyn's self-conscious because sewn on to her stomach she's got a one-inch piece of clear plastic tubing. It's a feeding tube called a G-tube. Cailyn's disease makes it hard for her to digest food and to keep her weight up. So at night while Cailyn sleeps, she gets feeding though that tube. Back home, the girl explains that by next summer she wants to get rid of that G-tube.
Ms. CAILYN FOWLER: Before I go into high school, into ninth grade.
SHAPIRO: And what do you have to do to get to that goal?
Ms. CAILYN FOWLER: Just eat a lot better and gain more weight.
SHAPIRO: Before that feeding tube can come out, Cailyn needs to gain five pounds. That's no easy task. But if she does, it will be a good sign because it will mean she's healthy. Still, for kids with disabilities and their families, things are rarely that simple. In Cailyn's case, it's needing that feeding tube that qualifies her for health insurance through Maine's Medicaid program. And if that tube comes out, Cindy Fowler knows her family will almost certainly lose that supplemental insurance.
Ms. CINDY FOWLER: When she does have it taken out, I don't know what it will do with her health insurance. I mean, of course we want her to have it taken out. I mean, that's the main thing. But we'll just have to deal with that when we, you know, when it comes to that. We'll do what we have to do.
SHAPIRO: Not long ago, people with cystic fibrosis died young. Now, with new drugs and treatments, the average life expectancy is 37 and growing. Bob Beall is president of the Cystic Fibrosis Foundation.
Mr. ROBERT BEALL (President, Cystic Fibrosis Foundation): We have patients living into their 50s and 60s at this point. You know, this should be a time of great hopefulness in terms of the patients and their future.
SHAPIRO: But a new survey by Beall's group finds that all over the country patients are struggling to pay for that life-extending health care. Some report their insurers used to charge a small co-pay for each prescription, maybe around $25, but now make the patient pay for 20 percent of a drug's entire cost. Some of those newer cystic fibrosis medications run twenty or thirty thousand dollars a year. One result is that one in four patients says they skip some of those drugs. Beall says many others go deep into debt.
Mr. BEALL: We've heard of people having to sell their houses. People go into bankruptcy. People borrow from relatives. They take two jobs. They're desperate. They love their children. They want to make sure they're providing the best care. And you do what you have to do to make sure that they can afford the drugs.
SHAPIRO: There's another family in Maine struggling with insurance problems. For the Hunnewells in Hollis, Maine, it started with what should have been good news. The dad, Jason Hunnewell, got promoted to foreman. He works for a company installing natural gas lines. But he was surprised when he found out he was now over the income limit for the state health program that supplemented the insurance he got from his job. That state insurance paid for a lot of his daughter's expensive care. Now the family's medical bills are piling up, and Jason worries he's about to lose the house where he lives with his wife and four children, including Abbie who has cystic fibrosis.
Mr. JASON HUNNEWELL: Abbie's condition hasn't changed, but they're saying because we're willing to put in the extra time or work, that now because of their guidelines, we no longer qualify. What do you do? Do you pull back on work? Do you tell them at work, don't give me a raise, don't give me a promotion, because it's going to hurt me?
SHAPIRO: A sympathetic caseworker told Jason and his wife Stacy they could get back that supplemental coverage if Jason worked less or Stacy stopped the part-time billing work she does for a nearby hospital. Or there was one other really desperate thing they could do.
Ms. STACY HUNNEWELL: She said if we were to divorce.
Mr. HUNNEWELL: Separate, legally separate, so they could go on Stacy's income alone. So some oddball things, you know. Just not advice you'd expect to hear. You're always told, growing up, do your best, work hard to do that, and we're being told the opposite, you know. It was just very disheartening to hear.
SHAPIRO: Eight-year-old Abbie Hunnewell gives a tour of the house, starting with her bedroom. Last year she spent more time in the hospital and sick here at home than she did in school.
Ms. ABBIE HUNNEWELL: This is my room. I share the room with my little brother.
SHAPIRO: Right down the middle of the wall, it's painted two different colors.
Ms. ABBIE HUNNEWELL: I get my own half, and he gets his own half.
SHAPIRO: I'm guessing that purple is your favorite color, and blue is his color?
Ms. ABBIE HUNNEWELL: Yep.
SHAPIRO: Stacy Hunnewell painted the two-tone wall in Abbie's bedroom. And she's lovingly decorated the entire house in country-style decor with barn stars, primitive art, and stencils on the walls with words like "hope" and "dreams." Stacy says the family was able to buy this house two years ago because at that time Abbie had just gotten on the state supplemental health insurance program.
Ms. STACY HUNNEWELL: You know, having that program allowed us to say, OK, now we can go out on our own and purchase our own home. We have that security. Now we can do that. And you know, when we bought this home, we bought it thinking we would have that program. We got this house like everybody does. You have a budget, you have a family budget, and you have to live within your budget. And everything was good.
SHAPIRO: But shortly after they moved in, Jason got his promotion. And because he was earning more, Abbie no longer qualified for the supplemental state insurance. Because the Hunnewells are paying thousands and thousands of dollars in medical bills now, they're behind on their mortgage. They worry they're about to be kicked out of this house. So Jason takes on extra work. Some weeks, he works 70 or 80 hours putting down pipe. He doesn't get to see Abbie much these days. And this year, when the ground freezes in Maine, he'll probably leave behind his family and go to a state where he can find work installing natural gas lines. It's the only chance he's got to hold onto this house for his family and to make sure he can keep his daughter healthy. Joseph Shapiro, NPR News.
NPR transcripts are created on a rush deadline by a contractor for NPR, and accuracy and availability may vary. This text may not be in its final form and may be updated or revised in the future. Please be aware that the authoritative record of NPR's programming is the audio.