By Tara Murphy
Better Communication Needed to Fight a Disease on the Rise
Jean Zotter spent six years as a lawyer advocating for families at
Representing inner-city children sickened by horrific housing conditions – pests living in cribs, whole walls gone black with mold – Zotter’s job was to try to fix these situations one by one. The task amounted to about 300 separate legal cases – for 300 separate families.
There had to be a way, she thought, to solve this problem from the outset, to prevent the onset of asthma or the exacerbation of the disease.
In 1997, Zotter finally hit upon the broader, solution-oriented approach she was seeking. She and about 40 like-minded professionals, parents, and community members came together to form the Boston Urban Asthma Coalition, an independent advocacy organization dedicated to supporting kids with asthma by working to change policies citywide.
Now, as the coalition’s executive director, Zotter believes her group has won clear victories on a number of fronts, including improving the housing conditions that had sent so many kids to the hospital with asthma.
Childhood asthma reached epidemic proportions long ago. Five years ago,
Asthma affects an estimated 6.3 million children nationwide. Prevalence of the disease has increased dramatically in the last two decades – jumping an estimated 75 percent between 1980 and 1996 alone.
Yet, with about one in every seven children nationwide now struggling with asthma, physicians and medical researchers are still unable to articulate what causes the disease to develop – or how to prevent it from affecting more and more kids.
The Ups and Downs of Asthma
For the parents who cope with it each day, childhood asthma is not so much a national epidemic as it is a chronic disease – an illness their children may never be fully free of. At its best, asthma can appear almost invisible. At its worst, which can be unpredictable in terms of onset and severity, asthma can be debilitating. In fact, more often than not, it can be downright terrifying.
Children in the midst of a flare-up, or “asthma attack,” cough, wheeze and even gasp for air. Their blood-oxygen levels drop as they begin to battle for every breath. In the most serious instances, their parents, teachers, or coaches must rush them to the hospital; many times, they end up staying overnight or for as long as it takes for them to breathe normally once again.
Depending on the severity of their disease and the care with which it is managed, these children may go for days, weeks, months or even years before they experience another such episode. But asthma is a physical condition that is always present – even when kids appear to be doing just fine.
“It always comes with us, no matter what we do or where we go,” says Michele Carrick of
Now 15, Michael administers his twice-daily asthma medication himself and has not suffered an attack severe enough to put him in the hospital since he was 3 years old. Nonetheless, the teen still gets into “serious trouble breathing” at least once a year; his asthma is categorized as “moderate to severe.” And Carrick says she thinks constantly about how her son can avoid the situations that start him coughing, and about where he will access help if he finds he really can’t catch his breath.
A recent overnight school retreat prompted countless phone calls to make sure her son’s teachers knew how to handle an attack if one occurred, Carrick remembers.
“Here it is all these years later, and I’m still asking: ‘What do we have to do to keep my son breathing through the night?’” she says.
What Exactly Is Asthma?
What defines asthma is not the labored breathing of an asthma attack at all, but rather a condition that the American Lung Association calls “inflammation of the bronchial airways.” These airways transport inhaled air throughout the lungs, and are typically lined by a delicate layer of tissue called mucosal tissue, covered with a thin coating of mucus, and surrounded by bundles of muscles that contract to direct the flow of air. As long as the underlying inflammation in the airways of asthma sufferers is held at bay, people with the disease breathe as easily as anyone else. But when that inflammation becomes exacerbated, the airways’ normal functions kick into overdrive. Increased mucus is produced, mucosal swelling and muscle contraction occur – and the coughing and wheezing most often associated with asthma begin.
The verdict is still out as to why some people’s airways become inflamed in the first place. Most experts agree, though, that children who develop asthma possess a genetic predisposition to the disease and that childhood asthma has a strong allergic component. The American Lung Association estimates that approximately 75 to 80 percent of all children who suffer from asthma have significant allergies, as well.
Asthma experts also believe that the recent dramatic rise in new childhood asthma cases stems from changes in the greater environment, rather than from factors related to the children who develop the disease themselves. And while this means that asthma’s spread must ultimately be dealt with at the environmental level, recent data suggests that the disease’s impact on the children who cope with it may be diminishing – even as the absolute count of those children continues to grow.
More Cases, But Better Management
Asthma is still the No. 1 cause of school absenteeism nationwide. According to the American Lung Association’s March 2003 statistics, the number of children who experience at least one asthma attack per year has increased by 12 percent since 1999. Yet the March 2003 figures indicate that hospitalizations for asthma declined by a slightly greater percentage during that same time period – reflecting, say the report’s authors, “a higher level of disease management” overall.
In Boston, Glenn Flores, M.D., recently reported in the medical journal Pediatrics that asthma was the primary diagnosis in more than 40 percent of avoidable pediatric hospitalizations at Boston Medical Center in the years 1997 and 1998. Flores and his colleagues, who interviewed both parents and physicians for their study on avoidable hospitalizations, concluded that devoting “more effort and time” to improving parents’ understanding of their child’s disease is likely to go a long way to keeping kids out of the hospital.
It sounds simple. But when the disease is asthma, the endeavor is in fact challenging enough to warrant a dizzying array of asthma education programs for parents and kids alike.
Jeri Bryant has been an Asthma Nurse Educator with Harvard Pilgrim Health Care’s phone-based Asthma Education Program for the past five years. On any given day, her caseload hovers between 75 and 100 families, giving her a front-row view of the real-life issues that can frustrate any parent’s attempt to manage a child’s asthma.
“Asthma is a chronic condition; it’s not like the measles,” she explains, hitting at the heart of a disease that never really goes away and forces parents to remain vigilant all the time.
In recognition of asthma’s better-and-worse nature, Harvard Pilgrim Health Care’s Asthma Education Program is designed to let asthma sufferers take advantage of its nurses’ one-on-one support as circumstances and the shifting severity of their disease demands. Bryant says she sees many of the families she counsels “drop out” of the program once they have mastered the basics of asthma’s symptoms and medications – only to call her when something in their child’s life changes and they need new advice to keep managing the disease.
According to Bryant, the situations that prompt phone calls from parents tend to be as varied as the families on the other end of the line. A child may be going off to camp for the first time or wants to participate in a sport, or a parent may be having trouble talking to the child’s doctor. But, regardless of whether a family is coping with a new diagnosis of asthma or has been living with the disease for years, Bryant says that every parent she talks to struggles with the cascade of medications that are almost always used to treat children’s asthma.
Many parents don’t understand doctors’ instructions or fail to recognize when their child is overusing a particular medication, Bryant says. And at a very basic level, she says, most parents simply find it difficult to reconcile the idea that their child must take medication every day, even when they have been doing well for a long period of time.
“They see that as a vulnerability,” Bryant says. “But it’s important to understand that children who get regular treatment for their asthma do better than children who don’t.” These children avoid hospitalizations, experience fewer asthma attacks and enjoy a much better quality of life in the long run, she says.
Suzanne Steinbach, a pediatric pulmonologist at Boston Medical Center, works with a different group of families; her patients are usually poor and some are uninsured, while Bryant’s are all enrolled in managed care. Nonetheless, Steinbach says, the parents she sees confront many of the same issues, especially when it comes to being anxious about their children’s reliance on daily dosages of medicine. Steinbach attributes some of this to a simple misunderstanding of what it means to have “stabilized” a child’s disease.
“Word hasn’t gotten out yet to parents that it is possible to have better control over their children’s asthma,” Steinbach asserts. “Right now, they’re satisfied with the stop-gap of the quick relief inhaler. And that just doesn’t treat the underlying inflammation that primes the airways for the ‘Big Attack’ that lands kids in the hospital.”
In fact, Steinbach suspects that many pediatricians are unaware of just how reliant their young patients are on the medications prescribed for emergency use only. Along with a group of collaborators, Steinbach is attempting to confirm this suspicion via a National Institutes of Health-funded research study that uses biweekly phone calls to keep track of children’s asthma symptoms and a series of mailings to pass that information along to their doctors.
“Parents don’t bring it up, because they think it is OK for kids to be using the inhaler every day, when in fact it’s a dangerous situation,” Steinbach explains. “If they knew how symptomatic their patients actually were, most doctors would probably reach out to them a lot more.”
Control Over Asthma Triggers
Even when doctors do reach out, however, there is sometimes little that a parent can do to make good on a physician’s recommendations, particularly if those recommendations relate to the other critical component of asthma management – helping kids avoid the “triggers” that can set off an asthma attack, whether they’ve taken their medications or not.
The list of known asthma triggers is almost as far flung as asthma itself. Cold air, exercise, stress, or illness are all conditions that start some children coughing, but the vast majority of factors that spark asthma attacks have more in common with the tiny particles that – like pollen, dust, or mold – can irritate the eyes or skin or precipitate allergic reactions. In other words, most asthma triggers are environmental.
Carrick says that many of her son’s asthma triggers, which include dog fur, pollen and cigarette smoke, are next to impossible to avoid outside her own home. And, although “keeping children’s asthma under control” is the catch-phrase educators frequently use to explain the goal of asthma management to families, a lot of parents – especially those without much money – simply have very little control over the condition of the homes in which they raise their children.
Research suggests a strong connection between asthma and poverty. Countless national-level studies report both a higher prevalence of the disease and a greater number of asthma-related hospitalizations among children from low-income homes, according to the Pew Environmental Health Commission. In Boston, the city’s Public Health Commission declared in its 2003 report that the greatest number of hospital discharges for childhood asthma almost always corresponded to the city’s poorest neighborhoods.
“There’s no doubt that having a shortage of disposable income limits parents’ ability to do some of the things more affluent families typically do when their child is diagnosed with asthma,” confirms Steinbach.
A family who owns their own home can rip up the floor coverings if their child happens to be sensitive to dust mites. But a family who rents is stuck with carpets that the doctor says to get rid of if the landlord refuses to do so, Steinbach explains. And even though parents living in dilapidated housing complexes may keep their own units immaculate, their children could be exposed to rodent or cockroach dander in the rest of the building.
Hope for the Future
After years of advocating for asthma sufferers at Boston Medical Center, Jean Zotter learned that whether or not a building becomes infested with rodents or cockroaches or develops mold has a lot to do with how it is first constructed.
One of the Boston Urban Asthma Coalition’s biggest achievements to date is the compilation of step-by-step advice on how to build housing that is both affordable and demonstrably more resistant to mold or pest conditions.
Called the Healthy Home Building Guidelines and launched in October 2003, the resource has already been adopted by two affordable housing development projects in Boston, resulting in more than 200 new housing units that are unlikely ever to spark or worsen children’s asthma.
Zotter credits this accomplishment to improved communication. When the Boston Urban Asthma Coalition first began advocating for new policies, she recalls, many groups refused to even admit that asthma was a problem. But years of advocacy have resulted in what the attorney describes as “a shift in the willingness” to address the issue at all levels.
“It’s harder to make environmental changes when no experts agree on the cause of asthma or why it is skyrocketing,” Zotter acknowledges. “But we certainly know enough to get started. If we take on the insurmountable tasks now, I’m hopeful for the long-term.”
An Asthma Action Plan for Doctors and Caregivers
Perhaps the most effective tool developed for managing kids’ asthma is a little piece of paper called the Massachusetts Asthma Action Plan.
Launched in October 2001 and created with input from more than 20 health-care organizations statewide, the asthma action plan demystifies the complex mix of medications used to manage children’s asthma by matching each medicine with the asthma symptom it treats and summarizing an individual child’s entire range of symptoms, medications and dosages on a single piece of paper. Parents, school nurses, and other caregivers each receive a copy, ensuring that everyone is literally “on the same page” when it comes to controlling a child’s asthma.
The Massachusetts Asthma Action Plan incorporates guidelines for asthma management put forth by the National Institutes of Health’s National Heart, Lung and Blood Institute. It is available in seven languages and can be ordered either online at www.maclearinghouse.com or by calling 1-800-952-6637.
The following organizations provide information and support for families coping with a child or adult with asthma:
Asthma and Allergy Foundation of America/ New England Chapter – 617-965-7771; www.asthmaandallergies.org
Boston Urban Asthma Coalition – 617-279-2277; www.buac.org E-mail: firstname.lastname@example.org
Boston Public Health Commission – 617-534-5965; www.bphc.org/programs/initiative.asp. E-mail: email@example.com
Tara Murphy is a freelance writer in Boston. She holds a master’s degree inpublic health.