The Asthma Trap
Page 3 of 3
|
|
ONE DAY A NUMBER of years ago, Lenore Coover, a registered nurse who specializes in asthma management in the Chicago area, was talking to one of her young patients. "It was hot, ozone levels were high," she remembers. "He'd been having some breathing problems, and the weather would probably cause more problems later. I told him he should go home, close his windows, and turn on the air conditioning." It took only a minute for Coover to realize that her instructions were ridiculous. "I was telling him to go home, close the windows, and bake!" she says.
Coover calls this her "aha" moment, as it led her to think about how much of the advice medical practitioners give to low-income asthma patients is both well-intentioned and useless. "Doctors will hand a mother a catalog for allergy products and tell them they need to buy mattress covers and pillow covers to get rid of dust mites," she says. "Well, those things are expensive. It won’t happen."
Since that time, Coover, a consultant for the American Lung Association and other community health programs, has focused her efforts on training and providing support for a new breed of asthma specialist—not a doctor or nurse, but a $10-per-hour worker who lives within an asthma-afflicted community. Coover estimates there are now 25 or 30 such "community health educators" in Chicago through programs funded by the Centers for Disease Control, the American Lung Association, and other health-advocacy groups. Similar projects have cropped up in New York, Atlanta, and San Francisco.
On a chilly afternoon, Coover takes me to meet Tamara Williams and Janice Patton, two chatty mother-hen types who are known among residents of the Chicago Housing Authority's Robert Taylor Homes as the "Asthma Ladies." "We used to be the 'Condom Ladies,'" says Patton, explaining that they once worked for an HIV-prevention program. "That's how everybody knew us first." The condoms, she adds, helped them gain the trust of people who did not like opening their doors to strangers, paving the way for their work with asthma.
Williams and Patton trundle from apartment to apartment paying regular visits to more than 50 families struggling with asthma. They give out caulking guns and steel wool to help plug rodent holes and mattress covers for dust mites—all provided through grants and community programs. They report broken elevators, which force asthma patients to climb multiple flights of stairs, and they write up complaints about demolition projects that get too dusty. Beyond that, they listen.
Both Patton and Williams have lived in the area—a perennially down-on-its-luck neighborhood several miles south of the Chicago Loop—most of their lives. Both have raised children here. And both women have asthma. "There isn’t anything someone can tell me that I can’t say, 'Girl, I’ve been there, too,'" says Williams, who has 11 children and a bevy of grandchildren to boot. They are also well acquainted with the subtle but insidious effects of chronic asthma: Williams and Patton have both made multiple trips to the ER for their asthma. The resulting ambulance bills, Williams adds, have piled up on her credit report. This is a familiar dilemma for low-income asthma patients. Unpaid medical bills lead to poor credit, which in turn prevents them from owning a home where they might get better control of asthma triggers.
The instability that pervades the lives of people with asthma can produce a vicious feedback loop. One study, by Kathleen Cagney of the University of Chicago, found that asthma was more common in neighborhoods where residents felt a lower level of trust and support. "If you’re in an area where you don’t know your neighbors, you might not feel comfortable letting your kids go outside," says Cagney. "And when you can't go outdoors, it really diminishes your health."
Even in placid suburban neighborhoods, children are spending less time outdoors than they once did, lured by television sets and video games and more likely to be driven from place to place instead of walking or biking. While much has been said about the rising tide of childhood obesity, asthma is arguably its silent partner, a life-altering and often life-threatening disease brought on by changes in our personal and global environment. No corner of the country, no socioeconomic group is exempt.
FACED WITH ASTHMA'S GRIM statistics, physicians and health officials seem finally to be seeking out more creative means for combating the epidemic. Back in 1994, Michael Rich, a pediatrician at Children's Hospital Boston, launched the Video Intervention/Prevention Assessment project, giving video cameras to 25 children with asthma and asking them simply to film their lives. "The reality is that doctors aren't going to manage asthma," says Rich. "It’s the people who have it who have to manage it." Four years and 489 hours of video footage later, Rich and his staff discovered that more than 90 percent of the asthma triggers in a child's environment were not reported in the patient’s medical history—a primary tool for diagnosing and treating asthma. The videos revealed mold or old carpeting or pets that hadn’t been mentioned.
"People who have little power to change their lives or their environments—particularly kids—don’t even see the things they can’t change," Rich says. As a consequence, he insists, treating asthma has to involve more than inhalers and nebulizers. "It's not just about medicating a pair of lungs," he says. "It’s about respecting your patients' lives and getting them to believe that they can take care of themselves."
In an even more far-reaching experiment, pediatricians at Boston Medical Center in 1993 started soliciting contributions in order to employ a small battalion of lawyers and social workers, who then took on asthma patients' housing issues, pressuring landlords to address roach problems and repair leaky pipes that may generate mold. This new approach has proved so successful that it's led to the launch of similar partnerships between doctors and lawyers in New York, Cleveland, San Francisco, and 11 other U.S. cities.
As the day is about to end on the Asthma Van, one last patient climbs aboard. This is Minosha Echols, a bright-eyed first-grader with a sideways ponytail and two missing front teeth. She is dressed in the navy blue pants and white collared shirt required by the school and is accompanied by her mother, Shalanda Johnson. As Minosha takes her pulmonary function test, I sit on the RV's vinyl bench seat with her mother. "Every day, she was coughing nonstop," she tells me, describing the weeks leading up to their first visit to the van. "She was choking, almost. And when she coughs, I worry." She'd taken Minosha to the ER seven or eight times before someone at the school told her about the van.
"She sleeps through the night now," says Johnson, sounding stunned. "This is the first time in six years she's done that." Not only is Minosha happier, says her mother, but she's gone from flunking her weekly spelling tests to getting straight B's.
Malamut recognizes the pattern. Once the disease begins to loosen its grip, the results can be far-reaching. Grades improve. Parents can get back to work. Family tensions ease.
"We have a lot of parents who come in and say, I was able to sleep for the first time without worrying, or I was able to hold a job for more than a month," she says. "I always tell them, when they first come to us, that we can’t change the other things in their life, but we can help their child breathe better." Malamut smiles. "And sometimes that alone can change a lot."
Sara Corbett is a contributing writer to the New York Times Magazine and the mother of two children.
