The Asthma Trap

BEFORE GOING TO RIDE on the Asthma Van, I confess I hadn’t given much thought to the impact of the disease. My brother has had it since he was a teenager, but his is a case of exercise-induced asthma, surfacing only when he works out and handily kept under control with occasional puffs on an Albuterol inhaler. His asthma hasn't stopped him from running marathons or even from climbing Mount McKinley. Asthma has never seemed like more than a nuisance to him.

More recently, though, asthma has become an issue for friends of mine, a few of whom were introduced to it through unexpected, white-knuckled drives to the emergency room with their children gasping for breath in the backseat. This is when asthma started to seem scary. Still, the children recovered, and their parents—who, like me, have the privilege of good health care and a stable income—have armed themselves with inhalers, nebulizers, and a new mandate to obsessively patrol their homes for allergens that might trigger an attack. But there were enough of these kids that I began to wonder: What's bringing this on?

One unsettling theory is that the asthma epidemic is at least in part a product of global warming. Last year, researchers at Harvard and the American Public Health Association released a report showing that rising temperatures deliver a devastating one-two punch to asthma sufferers. Warmer weather tends to release more allergens like pollen, ragweed, and mold spores into the air. Exhaust from cars, trucks, and buses, itself a cause of global warming, readily bonds to these allergens, delivering them deep into human lungs. Children, who breathe more air per pound of body weight than adults, are especially vulnerable.

And of all children, no one seems to be more at risk than African American and Latino kids who live in cities. Compared with their white counterparts, African American children in the United States are four times more likely to die of asthma and three times more likely to be hospitalized.

In some Latino neighborhoods, as many as one in three children have been found to have asthma. Why? Air pollution is clearly a factor—in urban areas, it has been shown that children living along bus routes have higher rates of asthma than those who don’t. New research also suggests that the disease may be exacerbated by financial hardship, exposure to violence, and family disruption. And while asthma is clearly a manageable condition, managing it requires patients to have some degree of control over their lives— to be able to get medication and use it regularly, to have periodic checkups, and to elim- inate triggers like dust, pest droppings, mold, and secondhand smoke.

Proof of how hard this can be is found every day on the Asthma Van, which is one of a pair of RV clinics in Chicago run by a nonprofit called the Mobile C.A.R.E. Foundation. Five days a week, the vans park in front of different schools, offering diagnosis, medication, and an invaluable extra—time to talk. (Insurance or Medicaid rules generally don't reimburse doctors for time spent educating asthma patients, which is key to preventing flare-ups; on the van, Malamut can spend a half-hour or more with each child.) Each van is staffed by a pediatrician, a nurse, and a driver/assistant, and provides an alternative to the emergency room and the storefront medical clinics that offer often perfunctory care to Medicaid patients. In five years of operation, the vans have screened more than 2,600 children for asthma and currently treat approximately 85 children each month. "We could probably have 10 vans operating and still not reach every child in Chicago who has asthma," says Amy Miller, Mobile C.A.R.E.’s executive director.

On the van, I meet Jamaal Yankieway, a chubby third-grader whose asthma grows worse during hot weather and when he exercises. Even though he is on five different medications, Jamaal spends many summer afternoons pressed up against the window of his apartment, watching other children play outside. "It’s hard seeing him not being able to live like other kids," says his mother, Tina Williams. "He’ll look out the window and cry because he can't go out." Though Malamut believes Jamaal could likely spend more time outdoors without incident, she says a parent's or child's fear of an asthma attack can be so overwhelming as to cause its own health problems—such as obesity and diabetes.

There is also Citron Miller, a lanky, handsome nine-year-old boy who is already 5 feet tall and aspiring to a future playing pro basketball. But that dream, as well as any backup career plans, might be compromised by the fact that last year he missed more than 35 days of school because he was having problems breathing. "I'm not working; I can't," says his mother, Carmella Miller. Citron’s asthma is easily triggered, she says, by anything from the smell of magic markers to chalk dust, and as a result Miller often wanders through the corridors of his school, checking to make sure he's okay. "I had two cousins who died from asthma," she says. "I’m not taking any chances."

By the time five-year-old Torreon Jackson shows up for an afternoon appointment on the van, his pulmonary function is just 45 percent of what it should be, according to Malamut's specialized laptop. This is both alarming and entirely ordinary among the children who visit the van. Often, says Malamut, it's a sign that they are not taking their daily medications -- the ones meant to reduce the baseline inflammation of the airways that characterizes asthma. "Because a lot of kids are used to breathing that way, you don’t always recognize that the child is in danger," she says.

According to Torreon's mother, Quavelin Jackson, a day earlier when Torreon had trouble breathing in class, his teacher sent him to the water fountain rather than the school nurse's office, where his inhaler is stored. "I worry that the teachers don't know what to look for," says Jackson. "I worry that they might think he’s tired or thirsty and just make him lie down." Asthma attacks can appear subtle -- a child will seem listless or quiet -- especially to someone not familiar with the disease. In a nationwide survey released last year, half of school nurses rated staff and student awareness of asthma triggers as "fair" or "poor."

But the survey gave parents an equally low rating for awareness. After being told the results of his pulmonary function test, Torreon's mother confesses that she hasn't been giving him his corticosteroid inhaler daily, as Malamut had prescribed. "I didn’t see how serious it was," she says, on the verge of tears. This is relatively common, says Malamut, who prescribes two types of medications to most of her patients—a daily steroid that must be administered with an inhaler, and a fast-acting "rescue" medicine (usually Albuterol) to open airways in the event of an attack. Lots of parents skip the daily medication, leaving their children to live with dangerously constricted airways. "A lot of these kids are so used to not breathing, their bodies accommodate," says Malamut. "But then they're exposed to one little trigger and that's it. Nothing can be done to save them."

Two summers ago, one of Malamut's patients was a 12-year-old boy she describes as "an incredibly lively, fun, active child." The boy's mother skipped numerous appointments on the van, Malamut says, and didn't always give him his daily medication. When he started gasping for breath one day on the playground, the Albuterol pump couldn’t reverse the tightening of the muscles around his airways. He died before reaching the hospital. "It devastated me," says Malamut, her eyes welling up. "I know we can't reach everybody, but he shouldn’t have died."

Malamut spends much of her time cajoling, lecturing, bullying, mothering, and otherwise reminding parents and kids of how important it is to take their asthma medication regularly. It is basically the only thing she can do to help a family control asthma, as few can afford to make the other changes that might help alleviate the problem. From Malamut's perspective, uncontrolled asthma creates its own sort of vortex—costing parents precious wages and children valuable schooltime, which in turn diminishes the family's ability to get away from circumstances that contribute to asthma. "Most of our patients can't just up and move out of the city or to a better maintained apartment," says Malamut. "They may need a cat around to take care of the mice, so they can't get rid of the cat. Or they live in a basement apartment that's filled with mold, and maybe Grandma takes care of the kids while the parents work, and Grandma smokes like a chimney. Sometimes there's not a lot a family can do."

The problem of control comes up again when I sit down with Sylvia Dixon, who is the resident nurse at Webster Elementary School. Dixon estimates that more than half of her time is spent on children who have asthma. Yet that effort is fractured as she, like many nurses working in cash-strapped school systems, is forced to divide her time between three schools, a Head Start program, and a neighborhood center; in total, she is responsible for 1,800 Chicago schoolchildren. "Honestly, I don’t have much time to deal," she sighs. Nor, she believes, do the parents of the children she sees: "I think the main obstacle is just—life," Dixon says. "If you’re trying to pay the rent, if somebody’s incarcerated or somebody’s sick, you need to eat. You need shelter. When you’re dealing with all that, asthma is just not a priority."