WASHINGTON – Only one in five children with asthma has the disease under good control, sobering findings that are helping to fuel a shift in care.
The change: A stronger focus on day-to-day symptoms, not just the bad attacks, so that more of the 20.5 million Americans of all ages who have asthma can breathe easier without limiting their activities.
Federal guidelines due this summer are expected to urge doctors to more closely monitor whether treatment is truly controlling everyday symptoms and improving patients' quality of life -- and to adjust therapy until it does.
Already, a campaign is under way to teach patients to recognize they need better help, and how to convey that to a doctor. If the doctor's happy that you've had no flare-ups but doesn't know you had to quit playing soccer to do it, you're not achieving good control.
Too often, physicians don't realize how severe symptoms are, says Dr. Jill Halterman, a pediatric asthma specialist at the University of Rochester. With children, their own parents may underestimate symptoms.
It's more complicated than denial: When wheezing while running or waking up at night coughing has been routine for years, people may not know to complain.
"It may be part of what they view as normal," says Halterman, who is studying the control gap. "We're hoping we can change that so the goal can really be for the child to have no symptoms and no limitations on activities."
That's the goal for adults, too, as specialists shift from asthma's severity as the chief treatment guide to this broader goal of asthma control, adds Dr. Allan Luskin of the University of Wisconsin in Madison.
"They can live normal lives but it takes work," says Luskin, who is working with the Asthma and Allergy Foundation of America's new patient campaign. "Patients and doctors need to understand that asthma can be controlled and we really ought to expect nothing less."
Asthma is a chronic lung disease caused by inflammation inside airways that in turn makes them super-sensitive, narrowing in response to irritants that wouldn't bother a healthy lung. The result: recurring episodes of wheezing, coughing, chest tightness and difficulty breathing. Attacks can be triggered by numerous things -- breathing someone's cigarette smoke, exercise, cold air, stress, viruses -- but roughly 60 percent are triggered by allergens.
There is no cure. But there are very effective daily medications that reduce inflammation and prevent flare-ups, especially if people also minimize their exposure to environmental triggers. Yet asthma still kills more than 4,000 people a year, and causes 2 million emergency room visits and half a million hospitalizations.
Many are children, and Halterman took a closer look at why. She analyzed almost 1,000 asthma sufferers culled from a federal study of child health in Alabama, California, Illinois and Texas.
Some 37 percent had not been prescribed preventive medication despite current guidelines, a long-recognized problem.
The surprise: 43 percent did have those medications, yet still experienced persistent symptoms, more than one attack in the last three months, or both.
"This is a group that has been largely neglected in the past because we've done our thing -- prescribe the appropriate medications and the hope was the child should do well," Halterman explains. "At that point, still much more needs to be done."
Only some of the control gap can be explained by skipping doses. To address that, Halterman has begun a study in Rochester, N.Y., schools to see if children fare better when school nurses give them their morning asthma medicine than when they have to remember to take it at home.
Also, secondhand smoke overwhelms asthma medicine's protection, she found.
The challenge is how to find those patients who follow the rules yet still don't achieve good asthma control, so they can get a timely treatment change.
This summer, an expert panel established by the National Institutes of Health is to update national guidelines on asthma care -- and while they're still being finalized, the latest draft suggests that challenge will take center stage. Among the steps under consideration are for doctors to closely assess patients' control every few months, looking for vital clues: Have you missed any work or school because of asthma? Changed any of your activities? Sleeping worse?
That's the kind of frank exchange the asthma foundation campaign aims for patients to spark now.
"I learned early on you have to be an advocate for your child," says Leslie Ayres, whose 8 1/2-year-old son Kenneth plays hockey and football in the brutal cold North Pole, Alaska, despite serious asthma.
Kenneth struggled to run without wheezing for several years, until at age 7 his parents found a doctor who ordered more aggressive treatment. As his lung function improved, so did his laps around the ball field.
The newer hurdle is teaching Kenneth to use his rescue inhaler at the first sign of trouble. Winded during hockey tryouts recently, he hesitated -- "I felt kind of embarrassed," Kenneth explains -- and got a frank lecture that asthma can kill.
"Now I know you have to take it when you need it."