Breathing lessons

Childhood asthma is one of the most insidious, endemic afflictions in the black community. Why is conquering it so difficult?

Published August 31, 1998 8:16AM (EDT)

As the nurse at Daniel Payne Elementary, a tidy little school in a rundown area near the U.S. Capitol, Delois Freeman has seen her share of sniffling kids and hungry kids and vomiting kids and kids with epileptic seizures. One thing she's never seen, though, is an asthma attack. So it came as a shock when, in the second-to-last week of her third year at the school, Freeman conducted an informal survey and discovered that at least 49 of the 410 kids at Payne were asthmatics. Amid the schoolyard clamor, she'd failed to notice an epidemic of breathlessness.

The woman who brought the epidemic to Freeman's attention was Eleanor Thornton, a Howard University asthma counselor who came to Payne to lead a workshop for the students. What surprised Freeman was commonplace to Thornton, who is part of a national research alliance that is studying the rise of asthma in America. Over the past two decades the team has discovered that inner-city black children are twice as likely as other kids to suffer from the disease, and six times more likely to die from it. The percentages of asthmatics at Daniel Payne were typical of inner-city schools across the country.

Asthma, which affects 15 million Americans and kills 5,000 every year, is caused by a constriction of passageways in lungs that are inflamed by an allergic reaction. Like most other common diseases, it has a sketchily understood genetic component, one that big pharmaceutical companies are spending millions of dollars in research money to understand. But while the gene pool hasn't changed since 1980, childhood asthma rates have nearly doubled in that period. So, for the past 20 or 30 years, scientists have been searching for environmental factors to explain the dramatic increase in asthma rates.

As it turns out, there are many elements feeding the biochemical chain that leads to asthma. Allergies to dust mites, cat dander, cigarette smoke, cockroaches, ozone and mold are common triggers. Living in tightly sealed houses containing any of those allergens aggravates the risk, as do stress, obesity, low birth weight and inconsistent health care. Ironically, while researchers dutifully compiled the factors that caused asthma, American society was busy aggravating most of them.

In the apartment blocks and row houses of Southeast Washington, D.C., one of the main asthma triggers is a protein found in the feces of and the body parts of dead cockroaches. Thornton didn't bother getting into that at Payne Elementary, though. There is really no way a 9-year-old boy in a bad Southeast neighborhood could entirely avoid cockroach dung. Thornton's mission at Payne was to teach kids how to use their inhalers and asthma medications properly, to assure them that asthma is nothing to be ashamed about and to encourage them to talk to their parents about the disease.

Considering the serious message, that summer vacation was imminent and the auditorium broiling hot, the 14 third-, fourth- and fifth-graders with asthma whom Nurse Freeman had gathered in the front rows for Thornton's workshop were awfully attentive -- even gravely so. Thornton, 39, stood next to a video monitor and played a tape about an animated girl named Roxy and her boyfriend Malcolm, a basketball-loving kid who is embarrassed to admit he has asthma
but is forced to deal with it after he collapses on the court one day in the middle of a big game.

Thornton gave the kids plain talk -- she didn't patronize them
or ghetto-talk them, but laid out what they needed to do for
themselves, in simple language. Maybe the children were listening so closely because it was the first time an adult had ever really explained to them how to deal with the disease they battled daily. Maybe it was because in a few weeks a lot of them would be more or less alone with it, running and playing, maybe, or sitting in stifling apartments watching TV to avoid dangerous neighborhoods. With their parents off working or whatever, they would be afraid and alone when that horrible wheeze built to empty-lunged panic.

Asthma isn't something that goes away when you aren't having a coughing fit, Thornton explained. It's a condition that follows you around, stays in your body and becomes worse and worse if left untreated. Thornton told her audience that they should take anti-inflammatory pills and sprays every day, regardless of whether they're suffering an attack. These medications would help keep their lungs from becoming swollen and constricted, she said, and bronchodilators -- the inhalable "rescue medicine" -- should be taken at the first sign of a cough to head off a crisis. Thornton, a trim woman in a white blouse and dark slacks, explained that she is an asthmatic, too, and has a 9-year-old asthmatic son who sometimes has to take three drugs every day.

"How many of you take medicine each day?'' she asked.

A few children raised their hands.

"How many brought their medicine to school today?''

Two children raised their hands.

"How many of you have been to the emergency room for an asthma attack?''

All 14 kids raised their hands.

"How many have spent the night at the hospital?''

All the hands shot up again.

After the presentation, nurse Freeman shook her head. "I didn't realize a lot of you had asthma," she told the kids. "Now next year I want you all to come see me." Although asthma has obviously been a traumatic experience in each of these children's lives, none of the parents had managed to communicate this to her. Under D.C. school regulations, it is illegal for these kids to carry around medication in their backpacks. If they need the medicine in school, they're supposed to get a letter from their parents authorizing Freeman to keep the drugs stored in a safe cabinet so she can administer them. Not one parent had ever approached her about doing this. "Three years at the school and no one has been referred to me yet for asthma."

Thornton isn't at all surprised. Suburban moms might take their kids for a well-child visit every several months. They might also have the time and energy and confidence to claw through the HMO bureaucracy to get reimbursement for those visits, and for the nebulizer (a machine hooked up to a mask that breaks up
liquid medicine into an inhalable mist), inhaler spacer (a tube that asthmatics attach to the inhalers they carry around to give themselves shots of emergency medicine) and the full regimen of corticosteroid inhalants, the anti-inflammatories recommended for asthmatics. But even for those wealthier parents and the doctors they see, managing asthma is a trial made more torturous by managed care. "Let's say I have a patient in my office and their asthma is under control, but I want to see them again in a month,'' says Los Angeles pediatrician Gary Rachelefsky, until recently the president of the American Academy of Allergy, Asthma and Immunology. "The follow-up visit isn't approved. In the meantime, the patient has two ER visits, misses five days of school, etc., etc. This happens to me every day in my practice. And every day I get five messages from the HMO reviewers saying, 'You have this patient on medicine X. We want him to be on medicine Y.'"

- - - - - - - - - -

If one of the country's leading pediatric allergists has to wrestle with the system, small wonder that children in Southeast D.C. tend to deal with their asthma alone until they suffer an attack bad enough to get them admitted to an emergency room. "Asthma can't be treated episodically," says Dr. Floyd Malveaux, Thornton's boss and dean of the Howard University College of Medicine. "Being poor creates barriers to managing a chronic disease, whether it's asthma or diabetes or whatever. When you're poor, you've got other challenges to deal with." In other words, says Thornton, "You can't afford to let that $7.50 an hour go if the kid ain't coughing. What it boils down to is, the reality of life is crisis management."

Isaiah, a fourth grader in a white Bugle Boy T-shirt, pipes up during Thornton's Q-and-A session.

"How come there's no cure for asthma?"

"They're working on it," she says wearily. "They're working on it."

Back in the early 1980s, after a diagnostic manual redefined asthma to include any kind of recurring wheeze and physicians began to realize how prevalent it was becoming across America, a British scientist named Thomas Platts-Mills theorized that the disorder is caused by infestations of dust mites, microscopic critters that collect in the shag carpets and plushly upholstered couches of the modern, double-paned American house. It was a compelling theory, but incomplete, as a coordinated U.S. study showed. It turned out that asthma rates were roughly the same in Virginia, a humid climate where mites thrive, as they were in Denver or Los Alamos, N.M., where there were none. In Los Alamos, asthma tended to correlate with the presence of animal dander. Families in the mountainous suburbs of that city kept their cats and dogs inside to keep coyotes from getting them. The pets would be uneaten, but the children got asthma. There were neither dust mites nor coyotes in Atlanta and Baltimore, but asthma rates in those cities were also high. With asthma flourishing in disparate locales, a general theory of indoor environmental aggravants took shape in the field, which went like this: Kids, rich and poor, in the city and the suburbs, were spending more time inside air-tight, centrally heated and air-conditioned houses that were comfortable for people but were also breeding grounds for the microorganisms. While there is likely a genetic component in most kids who get asthma, not everyone with this genetic predisposition suffers from it. By avoiding exposure to allergens, you can prevent a person who is genetically susceptible to asthma from ever having the symptoms.

It was a generally plausible theory, but it had some holes. For one, most of the changes in U.S. housing construction were in place by the mid-'70s, so why did asthma rates continue to climb around the country, while remaining low in most of the developing world? To this question, various answers sprung up. The most obvious one was that maybe asthma wasn't well-diagnosed in the third world, where health care was focused on lethal maladies of childhood, things like malnutrition and chronic gastrointestinal infections. But there were other answers. Margie Profet, a Los Angeles theoretical biologist and a MacArthur grantee, believed that the biochemical channels leading to allergies had evolved to battle parasites. With no parasites in our bodies, instead we get overstimulated immune responses such as asthma. A British scholar named Andrew Wakefield came up with a parallel theory that focused on childhood vaccinations. In the absence of immune-priming diseases like whooping cough, he theorized, the immune system went bonkers and turned on the body.

Few well-known asthma researchers concur with the theories of Profet and Wakefield. But some of them speak of "the Golden Arches'' effect, namely that asthma affects lungs weakened by the more sedentary lifestyle associated with American couch potatoes and fast-food culture. Asthma is less prevalent in rural, less-developed areas of the world, where people ride bicycles and walk, eat fewer foods containing saturated fats, some of the byproducts of which are believed to feed into the chemical pathways of allergic reaction.

In hopes of finding a cure, geneticists are furiously studying asthma and have actually cloned several genes that seem to be linked to the disease. But whatever has caused the asthma upswing, it's unlikely genetics alone are going to reverse the trend. "The environment plays such a big role in this disease," says Malveaux, the Howard University dean. "It's not one of those diseases where if you have the genes you'll get the disease -- though genes may affect the ultimate severity. There's nothing we can do about the genetics right now anyway. There's a lot we can do about reducing triggers to the disease and structuring the environment -- but it means having access to health-care systems. The poor generally don't."

Without guidance, Thornton says, many children neglect their
medicine altogether until they end up in the emergency room. With
the right drugs and equipment, though, they can master asthma.
Access to health care can help children figure out how to control
their condition. It also helps to have a doctor and nurse tell
your mother to stop smoking, or to vacuum the place more often,
or get rid of the rug and the old couch, so there are fewer
places for dust mites to live.

For Thornton, childhood asthma is one of the insidious,
endemic afflictions of the black community, but getting a handle
on it may also be a way to start tackling some other problems.
"You wonder why their attention spans are so short," she says
after the asthmatic children at Payne Elementary have filed back
to their classrooms. "It's because they're sitting there not

By Arthur Allen

Arthur Allen writes on health, science and other issues for Salon and Kaiser Health News. He lives in Washington.

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