Three times in one week in September, 13-year-old Ellis Powell struggled to breathe. Three times, his mother called an ambulance and raced the gasping boy to the emergency room. Three times, she prayed for God to “cast that demon out” of her frightened child’s chest. And three times, Ellis missed school and became so afraid he would barely move.
“Will it ever go away?” his mother, Shirley Powell, asks plaintively.
Powell has again come to the ER at Children’s National Medical Center on this October day, not because Ellis has had another crisis, but because he has an appointment in the Asthma Clinic, in the only ER in the country that tries to do what other doctors do not: teach families how to manage the chronic condition with medication so they can avoid terrifying and costly trips to the ER.
The District has one of the highest rates of pediatric asthma in the country. It also has among the highest rates of children who are rushed to an emergency room struggling to breathe.
Asthma is yet another demarcation between rich and poor in the divided city: Most of the children who have had an attack serious enough to land in the ER are African American. Many live, as the Powells do, south and east of the Anacostia River, where studies have found that children are rushed to the ER at up to 10 times the rate of those in wealthier Northwest neighborhoods.
Most of those visits are preventable.
And the asthma specialists best equipped to help manage the chronic condition are clustered in Northwest Washington. In Southeast, a recent survey found only one.
Powell doesn’t know any of that. All she knows, as she sits clutching a large blue Tupperware box rattling with a confusing array of pills, inhalers, sprays and prescriptions, is that Ellis has a monster in his chest.
Stephen Teach, an ER doctor, set up the clinic a decade ago when he became frustrated by the number of children admitted for asthma attacks that could have been prevented.
The clinic has had some success. ER visit rates for asthma have fallen by 40 percent, even as the prevalence of asthma continues to rise. But trips to the ER are still sky high. Extra chairs and oxygen tanks now line the ER halls in anticipation of the onslaught of attacks during the fall and winter that are triggered by cold air, cold and flu season, and seasonal allergens.
“This is really a tale of two cities. All you have to do is look at Zip codes. There are literally hundreds of children from wards 7 and 8 who are hospitalized every year for asthma,” Teach said, and rarely do they come from Northwest neighborhoods. For every ER visit, a child misses as many as 20 days of school, he said, more than for any other chronic condition. And because serial attacks can make people afraid to let children run and play, uncontrolled asthma can rob them of their childhood.
“Our goal is to make asthma control as good in Southeast as it is in Northwest,” he said. “It’s a fundamental question of health equity.”
But how to do that remains a mystery, Teach said, if even a state-of-the-art program like the Asthma Clinic isn’t enough. So a determined Teach is starting a clinical trial to see whether having school nurses give children medication at least once a day would make a difference.
He walks into a private ER room that doubles as the Asthma Clinic and patiently explains the trial to Powell. She eagerly signs up.
“Anything to help my baby breathe.”
The way the Asthma Clinic works is both simple and profound: Families are invited to the clinic within two weeks of a trip to the ER, when the memory of a life-threatening attack is fresh. Doctors, nurses and asthma educators spend at least 90 minutes with each family, unusual in an era of 15-minute doctor visits.
Ellis, taking in hoarse, shallow sips of air, slumps in a chair next to his mother.
Two asthma educators show them diagrams of the lungs and explain what happens during an attack, how the small bronchial tubes can fill with mucous and the muscles around them tighten, turning wide, milk-shake-size straws into tiny coffee straws that make it hard for air to pass through.
They tell her that one of the biggest triggers is a common cold.
“What? For real?” Powell sits back. “No one ever explained this to me.”
Asthma, Teach says later, is a complicated condition to manage, requiring different medications at different times: steroid inhalers daily prevent the airways from swelling and filling with mucous; rescue medicine like albuterol or the steroid prednisone relax rapidly tightening chest muscles; and allergy medication wards off asthma triggers. There are nasal sprays, inhalers, powders, pills and liquids. Some medications require masks, spacers to attach to inhalers or special machines called nebulizers.
Controlling asthma requires ongoing coaching, said Lisa Gilmore, executive director of the National Capital Asthma Coalition. “And right now, Children’s is the only one doing it.”
In the clinic, the asthma educators ask Powell whether her home contains such triggers as carpeting, dust, mold, pet dander, mice or cockroaches.
Powell lives in public housing in Barry Farm. She keeps her home clean, she says, but she has spotted mouse droppings. They had a mold problem in the kitchen, but the offending cabinet was finally replaced after three years.
Then the educators ask Ellis to show how he uses all the asthma medications in the Tupperware box.
The boy gives a halfhearted shake to the inhaler, puts it in his mouth and takes a short puff, enough to make it to the back of his throat but not into his lungs.
The educators show Ellis how the medicine should be shaken vigorously for at least five seconds, how he should exhale all his breath, then suck the medicine in deeply, hold his breath to the count of 10, then wait one minute and do it all again.
“Oh my God! No wonder you still hurting!” Powell exclaims.
Then the educators look at the medications. One is expired. Another is empty. They show Powell where to look for expiration dates and the counter that tracks the number of doses.
She slumps in the chair. The counter on Ellis’s inhaler reads “0.”
“So that’s why he’s been sick,” she says quietly.
Asthma, the most common chronic illness for adults and children in the United States, costs as much as $56 billion a year in medical expenses, lost work and school days, and premature death, according to the Centers for Disease Control and Prevention.
And in many ways, Washington is a “perfect storm,” Teach said, for the condition.
The weather is hot and humid, which encourages mold and other allergens to grow. Asthma also tends to be more prevalent among African Americans, who make up about half the District’s population. And poverty — prevalent in the city — exacerbates everything.
Sue Popkin, a researcher with the Urban Institute working on a soon-to-be-released study for the Asthma Clinic, said Powell’s story is typical. Although the cost of asthma medication is expensive and rising, most residents have health insurance to cover the cost and prevent uncontrolled attacks. The problem is obtaining medication and knowing when and how to use it.
“Here we have universal health insurance in D.C. We have a state-of-the-art program at Children’s, and it’s still not working,” Popkin said. “The asthma problem here is really a problem of poverty. . . . If you’re poor, you don’t have time, you don’t have money, you can’t get refills easily and you have triggers in the environment you can’t deal with. That’s what makes it so difficult to manage.”
In a series of focus groups convened with families that had made several trips to the ER for asthma, the study found that many parents live in substandard housing with poor ventilation and are surrounded by well-known asthma triggers that they can do little to control. Few have a relationship with a primary-care doctor.
Low-income families spoke of missing work and losing jobs because they had to take children to get allergy shots, wait at a doctor’s office or go on long bus rides to refill prescriptions. For many families, asthma is just one of many crises to juggle, including paying the rent and dealing with other health issues.
Many people also think asthma is like a cold, instead of a chronic condition that must constantly be managed, so they stop taking the medicine when they feel better. And wind up at the ER.
Before coming to the Asthma Clinic, Carman Wilkins’s 9-year-old daughter, Jordyn, had been rushed to the ER with life-threatening asthma attacks more than 20 times, often being hospitalized in the intensive-care unit.
Wilkins had thought Jordyn needed her medication only during the fall and winter, when her asthma is at its worst. She had worried about the side effects the medications were causing: Jordyn gained weight, her hair began to fall out and she became jittery.
“I didn’t know,” Wilkins said.
In the two years since their first Asthma Clinic session, Wilkins, a social worker, has come to understand that Jordyn needs to take a panoply of medication twice a day, every day, year-round. Teach has taken the time to find the proper dosages. And Jordyn, the child she once called her “porcelain glass doll” and was too frightened to ever let run, jump or play, is now throwing herself upside down on a competitive cheerleading team, effortlessly taking in big gulps of air.
Ellis Powell is not there yet.
At the Asthma Clinic, his mother says she’s too afraid to let Ellis exercise much. He quit football, and she doesn’t let him play basketball with his younger brother on the patch of hard-packed dirt in their back yard for fear the dust will set off his asthma. She even went to his school to ask that he not have to walk so much to get to class.
But nurse and clinic director Molly Savitz says exercising is critical for kids with asthma to strengthen their lungs.
“Kids with asthma often get so used to not being able to do stuff, so they don’t,” Savitz says. “It’s a nasty cycle.”
Later that afternoon, at their yellow rowhouse in Barry Farm, Powell calls up the stairs for her boys to get ready to go to Safeway to pick up Ellis’s new prescriptions. Ellis stops playing a wrestling video game, plods heavily down the stairs and flops onto a chair. He no longer wants to go to school, he announces. He wants to stay home and try online school.
“Do you have your pump?” she asks.
He shakes his head.
“Can you go get it?”
He again shakes his head, breathing hard.
“It’s upstairs. I don’t want to walk.”