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DALLASTOWN, Pa. -- The slipcovered furniture in the Smith family's small, crowded living room is secondhand. The paint on the ceiling is peeling.
The kitchen counter offers a clue to why home improvement takes a backseat. There sit small baskets holding an array of asthma inhalers, peak-flow meters to measure breath volume, nasal sprays and other daily supplies needed in this home where asthma and allergies are a looming presence.
Laura Smith, 42, has asthma so severe that she has been hospitalized about a dozen times, most recently in April. She wears a medical-alert bracelet because her breathing can suddenly shut down.
The children, Emily, 10, and Collin, 7, have milder forms of asthma, complicated by allergies. They always carry their inhalers along with a written management plan that lists their medications. Their father, Ron, 42, although spared asthma, is plagued by allergies.
The family has made accommodations. They've pulled up carpets, and they carefully choose the days they can safely be active outside. "On hot, humid days, I can't take (the kids) to the park," Laura Smith says.
Less evident is the impact of asthma on the family's fiscal health. People with chronic diseases like cancer, heart disease, diabetes, asthma or arthritis are far more likely to report having trouble paying medical bills or being unable to pay for basic necessities than those with no chronic condition or disability, finds a survey by USA TODAY, the Kaiser Family Foundation and the Harvard School of Public Health.
And the struggle is particularly hard for Americans suffering from chronic asthma. In the survey, 43% of people with asthma in the family report not having enough money to pay for health care in the past year, compared with 42% of households dealing with cancer, 35% with diabetes or arthritis, and 33% with heart disease.
And 44% of asthma households skipped treatment, cut pills or didn't fill prescriptions because of cost, compared with 43% with cancer, 37% with diabetes, 36% with arthritis, and 35% with heart disease.
This compares with 20% not being able to pay for health care in households where no one reported a chronic illness or disability.
"If health insurance was working properly, the sicker you are, the more protection you would have," says Kaiser's Drew Altman. "It seems to be working backwards, the sicker you are, the more trouble you have paying bills."
For the Smiths, the financial burden means the ceiling goes unpainted, vacations are limited and no gymnastics classes for the kids. "We had to pull them out. It was too expensive," Smith says.
Her husband sells welding supplies and spends his days on the road. She's a nurse at a local hospital's neonatal intensive care unit but can work only part time because of her health. Insurance is through her husband's employer.
"We're still paying from my hospitalization in April that wasn't covered. We have a very small house. We don't have a DVD player. We have one computer, one TV."
High cost of medications
Janice Nolen, national policy director for the American Lung Association, is not surprised that people with asthma have more trouble than others making ends meet. "Lots of people with asthma have to take daily medication," she says. The medications, which cost $100 to $900 a month each, usually are covered by health insurance, but the cost of insurance co-payments, which varies by policy, may cause patients to delay refilling prescriptions. "So they end up in the emergency room because they're not taking their medicines," Nolen says. "The whole philosophy is that you treat most asthma with a preventative medicine, an inhaled steroid, every day."
About 15 million to 20 million Americans have asthma, caused by inflammation of the airways, the tubes that carry air in and out of the lungs. What causes the inflammation usually is a combination of triggers such as exercise, viral infections or exposure to allergens such as pollen, pet dander, dust mites or mold, says Norman Edelman, dean of the School of Medicine at the State University of New York-Stony Brook. If allergies are involved, desensitizing shots or medications may be recommended.
Lung irritants such as cigarette smoke and smog make it worse. Over the past 15 to 20 years, the prevalence of asthma is up 70% to 80%, Edelman says. Researchers can't explain the increase, although it may be leveling off.
"Over the last five years or so, it looks like severe asthma is going down a bit," he says, "and I think that's due to better care. People are finally beginning to understand asthma is an inflammatory disease, and you need to take medication, and unfortunately, that's those expensive inhalers."
Smith says she's grateful for health insurance but out-of-pocket costs are no small matter. This year, they've spent more than $700 for their portion of the cost of asthma treatments, she says, while their insurance company paid out more than $4,700.
In addition, Smith says the co-pay for her four-day hospitalization was more than $450, and their deductible for doctor visits is $1,200.
Asthma's price tag can strain even the most carefully planned middle-class budget. "You can't afford to do everything," Smith says. "You've got to pay the bills."
Those hit the hardest financially are not the poor, who are likely to be covered by Medicaid or other government assistance plans, but working people whose insurance comes with high co-pays and deductibles, says pediatrician Derek Johnson, director of allergy and clinical immunology at Temple University Children's Medical Center in Philadelphia.
Co-pays add up
Johnson, who commutes between the clinic in Philadelphia and his practice in Fairfax, Va., says he finds that most patients on medical assistance "can get whatever the physician writes the prescription for without a problem. But many who are insured have graduated co-pays, so they pay a percentage of the cost of the medicine."
Those percentages can add up. An individual co-pay may be as little as $5, he says, but asthma usually responds best to combination therapies involving several medications, and it's not unusual for patients to take three to five drugs every day. Because the disease tends to run in families, several people with asthma may be in a household, each needing several prescriptions filled every month.
When considering how best to treat asthma, doctors have to weigh factors such as which drugs are on each insurance company's list of approved drugs and how likely it is that a patient will be able to meet their co-pays, Johnson says. "You have to decide whether or not they're going to be able to do it, to keep up with the treatment. I had a patient who had three asthma medications. She had a $5 co-pay, but for her, $15 was cost-prohibitive, and she wasn't filling any of her medications."
A family struggles
Juggling payments for prescription orders and doctor visits has become a frustrating puzzle for Andrea Johnson, whose daughter, Mamako, 9, is an asthma patient of Derek Johnson's at Temple. (The family moved in March to Philadelphia from San Antonio and is not related to Johnson.)
Johnson's husband, Theo, has bronchitis, but asthma was not on the family radar until a dramatic event two years ago when Mamako was in second grade.
"She collapsed at school and was taken to the hospital," says Johnson, who is a teacher and was in class at another school at the time. "That's how we found out she had asthma. It hit us by surprise."
Mamako was admitted to intensive care and wound up missing a month of school. "All these yearly bouts of what I thought were bad colds were asthma- and allergy-related." She takes seven or eight medications, yet each spring has brought on an attack that sent her to the hospital.
"We still struggle with it. I still feel like I'm new (at asthma management)," Johnson says. "You never know what's around the corner. I still haven't gotten the hang of it."
Johnson, whose husband works in nuclear medicine at Temple, recently gave birth to their son, Macauley, and has been at home with the children. She'd like to go back to teaching, but because of the cost of day care, trips to the doctor for Mamako and the baby, and co-pays for medicines -- ranging from $5 to $15 a prescription -- she thinks it might make more financial sense for her to stay home. "I would love to get back to the classroom. That's what I do." But "I'm not sure we can afford it."
Scheduling doctor's appointments and drug refills is a balancing act, especially when several prescriptions run out at the same time, she says. "It's, 'OK, who can go to the dentist this month?' We have to negotiate that."
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