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A concurrent rise in allergies, including food allergies, Weiss says, suggests that the Western diet may also play a role in rising asthma rates. Several preliminary studies have shown that the children of mothers who eat fatty fish and leafy green vegetables have less asthma than do other children. Weiss is currently doing a study of 6,000 pregnant women to test this finding. He says, "One thing we do know: as the Western diet spreads around the world, so does asthma."
Another hallmark of the Western urban lifestyle is a markedly low level of physical activity. Watching television is by far the most frequent childhood pastime, and cyber-play is beginning to take up the rest of what might be outdoor playtime. Thomas Platts-Mills, a professor of medicine in the division of allergy and immunology at the University of Virginia Medical Center, says that this trend may be making its own contribution to the asthma epidemic. "The question is," he says, "what is it about children running around for hours that might protect them from asthma?" Platts-Mills says that studies have shown that lungs are more likely to become twitchy if people go a half hour or more without taking deep breaths. Taking deep breaths, he says, is what children used to do when they scurried around the playground or chased their siblings. It seems that the fruits of progress -- inoculation against microbes, protection from parasites, and a life of leisure spent in climate-controlled comfort -- have had the unfelicitous and certainly unanticipated side effect of making us more vulnerable to a chronic lung disease.
HERE is no comprehensive surveillance of trends in asthma at the state or local level, although the National Center for Health Statistics conducts annual surveys that determine, among other things, asthma prevalence. It is hard to know for sure which lifestyle or environmental factors might be important in spreading the disease. At the International Conference of the American Lung Association and American Thoracic Society held last year, Surgeon General David Satcher singled out asthma as a condition for which current public-health measures were clearly not effective. "We're moving in the wrong direction, especially among minority children in the urban communities," he said, adding that the federal government is now making a major financial commitment to support research and programs aimed at intervention and prevention.
The toll of asthma continues to increase, despite important advances in diagnosis and treatment. Michael Rich, a pediatrician and a child-health researcher at Harvard Medical School, says this is no mystery, given how little we know about the causes of asthma and how to prevent it. "Billions of dollars are being spent on this disease, and we know a lot about it, yet it's getting worse, because we're not asking the right questions," Rich told me recently. "The real question is, what stands in the way of knowledge being translated into behavior?"
Before earning his medical degree, Rich worked in the film industry. He assisted the director Akira Kurosawa in the making of the epic Kagemusha, the story of a petty thief in feudal Japan who is spared the death sentence so that he may impersonate a recently killed warlord. The thief is transformed by this experience. Like Kurosawa, Rich is a firm believer in the transforming power of experience. He has also retained a filmmaker's knack for narrative, and has devoted himself to helping his patients chronicle their experience with the disease, by giving them camcorders and asking them to make video diaries. In one a boy about nine years old confesses that he thinks his best friend may die at any moment from an asthma attack. In another, as terrifying as any horror film, a teenager gasps desperately for breath in a long car ride to the emergency room. The ride goes on and on, with death in hot pursuit.
It's clear that these young patients are extremely well informed. They know that spasmic constriction of the bronchial passages and swelling of the mucous lining can cause obstruction of their airways, and that when this happens, breathing will be difficult -- at times impossible -- and they will feel as if they are drowning. They know that taking anti-inflammatory medication regularly will help to ward off these attacks and make their lives easier. But for many of these young people the treatment is worse than the disease.
This is made clear in a tape by Melinda Emmanuel, one of Rich's older patients. Rich first met Emmanuel four years ago, when she was eighteen and in respiratory arrest -- not for the first time. "Her reality," Rich told me, "is that medical care is malignant and has messed up her life." Emmanuel was the sort of patient physicians dread -- the kind they call "noncompliant."
Emmanuel taped herself for hours, goofing around, talking on the phone, hanging out. In one unguarded scene she sprawls across a bed in a darkened room, bloated and exhausted. She complains that her asthma medication -- an oral cordicosteroid prescribed to reduce inflammation in severe cases -- has made her moody and miserable, and added ninety-five pounds to her normally petite frame. An excellent student, she says she would have been the valedictorian of her high school class had asthma not forced her to miss so many days of school. She looks disgusted and hopeless.
On another tape, made months later, Emmanuel is slim and vigorous and is arguing with her allergist in his office. The doctor has his head in his hands. Emmanuel has just told him that she will no longer take any cordicosteroids. He tells her she might well die. Later, Rich says, the allergist "fires" her.
"Compliance implies a power hierarchy rather than a partnership," Rich told me. "It's not uncommon for an asthma patient to get fired for noncompliance. With a chronic disease like asthma, there has to be collaboration between physician and patient to develop a treatment plan. Asthma is not the number-one issue in Melinda's life, or in the lives of a lot of my patients. They've got other concerns."
I met Emmanuel recently in the hospital, where she was recuperating after surviving yet another respiratory arrest. She is twenty-two and the mother of two, struggling to squeeze in college classes while taking care of her children and holding down a job. She had a photo of her boyfriend next to her hospital bed, and a tube up her nose. She told me that although she knew the steroids had been necessary when she was younger, she quit them cold turkey. The withdrawal was awful. "I had pathological dreams, night sweats, headaches, and PMS to the twentieth power," she said. "But no one was going to make me take those pills anymore."
Emmanuel described her life as having been dominated by asthma even before she knew she had it: "My teacher said I was out of shape and lazy. Then I had an attack. It's been a main focus ever since." Theoretically, even severe asthma like Emmanuel's can be controlled, but many patients have neither the will nor the way to deal with it. The biggest problem is that many patients do not take the daily doses of anti-inflammatory agents that prevent flare-ups, although most are more than willing to use an inhaler in times of crisis.
"Everyone abuses it," Thomas Platts-Mills says. On one of Rich's tapes a young girl takes several deep breaths from her inhaler (exceeding the prescribed dose) and, looking dreamy, says, "I love this stuff."
Even some physicians are unaware that asthma is a chronic disease requiring constant vigilance. David Rosenstreich says that doctors should prescribe on average one course of anti-inflammatory medication to control the disease for every course of Albuterol or other broncho-dilater used to treat the symptoms. In Hunts Point and other low-income neighborhoods in the Bronx the ratio is closer to four doses of broncho-dilater for every dose of anti-inflammatory. Many doctors seem to be prescribing drugs to curtail asthma episodes rather than caring for the patient who suffers them.
In the subways of New York there are posters that read I HAVE ASTHMA BUT ASTHMA DOESN'T HAVE ME. Louise Cohen, the director of the New York City Childhood Asthma Initiative, is in part responsible for these. She says that many children with asthma have very low expectations for themselves, and show it. Some think they will die young, so they see no virtue in ambition. Others see no reason to attend school. But the asthma epidemic, Cohen says, would have much less impact on children's lives if it were properly managed. Studies show that individual case management can make an enormous difference. For example, by being constantly available to his patients, Schroeder claims, he has cut their emergency-room visits by 90 percent. With as many as 20 percent of children in some areas needing care, however, Cohen doesn't expect that individual case management can ever be the norm for asthma patients. "The current health-care system was designed for kids to see docs only for acute visits and once a year for check-ups," she says. "It was not designed for chronic disease."
While scientists are scrambling to find the underlying reason for the explosion in asthma, and federal health agencies are devoting tens of millions of dollars to these efforts, society is exploring a means by which to contain the disease. The Department of Housing and Urban Development and the Centers for Disease Control have made public their deep concern about asthma. Earlier this year HUD awarded $4.5 million in grants to help inner-city residents clean, repair, and maintain their homes in order to reduce asthma triggers. Whether this will dramatically reduce asthma symptoms is unclear, but it is doubtless a good first step. And more needs to be done. A study published last September in the Journal of Pediatrics found that severe asthma symptoms and hospitalizations are significantly reduced when families are given regular access to specially trained social workers. Though of great benefit, such farsighted grassroots efforts have so far been scarce and sporadic, because of costs in time and money. "This is a chronic disease that requires comprehensive management," says Virginia Taggart, the health-science administrator with the division of lung diseases at the National Heart, Lung, and Blood Institute. "If anything, our patients are getting less time. Our health-care system is working against us."
As chronic diseases become an ever-greater part of the health-care burden, a change in emphasis from emergency treatment to long-term care seems an obvious step. Yet the American health-care system is designed to treat people as quickly and expediently as possible, not necessarily to care for them. Until the system is reconfigured to deliver more than palliative care, asthma will continue to take a tragic toll.