Breathing Lessons

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Dr. David Rosenstreich never meant to betray the Bronx. After all, he’s a native son. Raised in a walk-up in the shadow of Yankee Stadium, educated at Bronx Science, City College and NYU, Rosenstreich, now an immunologist, came back to the borough of his birth to do research at Albert Einstein College of Medicine. He stepped into the middle of an epidemic.

For an immunologist, asthma in the 1990s has been a fascinating mystery. In a decade in which medicine has started winning out over killers like AIDS, asthma is unstoppable. The number of Americans with the disease doubled between 1980 and 1994, and the South Bronx, Rosenstreich’s backyard, was front and center in the epidemic, with one of the highest rates of asthma in the United States and a hospitalization rate three times the national average.

In 1997 Rosenstreich, now director of allergy and immunology at Albert Einstein, dropped his cockroach bomb. In a now-famous paper in the New England Journal of Medicine, Rosenstreich showed that a big part of what was sending more and more asthmatic inner-city kids to the hospital was cockroach allergies. More specifically, it was allergies to cockroach dung.

Researchers who knew asthma weren’t surprised; it merely proved what a lot of other work had already suggested. “There was really nothing revolutionary in that article,” Rosenstreich says now.

But the press went wild for the study, and plenty of people in the Bronx were furious. To them, the cockroach story read like this: The disease that is ravaging your neighborhood is your own fault. The Bronx is plagued with diesel trucks, factories, incinerators, waste transfer stations and sewage plants, and the cockroach paper seemed to get polluters off the hook. In this borough, where anti-pollution campaigns have been built around the skyrocketing asthma rates, it sounded like nonsense, and felt like betrayal.

“I believe from the bottom of my heart that roaches were here before Christ,” says Eva Sanjurjo, a longtime clean air activist with Hunts Point Awareness. “Now scientists are pointing to roaches as if that’s what’s giving us asthma. Bullshit! What’s giving us asthma is the garbage and the shit that Mayor Giuliani is sending to our community.”

Rosenstreich never saw it coming. “I was just naïve,” he says now. “I thought that if you tell someone something new about asthma, they’d be happy.” The fact is, Rosenstreich never said that pollution doesn’t matter–only that cockroaches (and dust mites, and cigarette smoke) are important too. “What surprised me was the backlash, the idea of blaming poor people for their asthma, which was not the intent at all,” he says. “The pollution lobby fell on this study, saying there is no reason to [improve air standards] because asthma is a roach problem, saying that people should just get vacuums.” It didn’t help that a pro-pollution editorial in the New York Times co-opted (he says misrepresented) his research.

Sanjurjo is absolutely right: The waste coming through Hunts Point makes asthmatics sicker, gives them frequent crippling attacks, sends kids to the hospital and sometimes even kills people. But no matter how hard scientists try, no one has yet been able to prove that pollution causes asthma, that bad air is what gives healthy people the disease.

If you hated the cockroach study, hold on tight. Some of the newest asthma research backs up what people in the South Bronx and East Harlem have been saying all along, that trucks and toxins are to blame. But that theory doesn’t answer some crucial questions–why, for example, rich countries have much more asthma than poor ones. Meanwhile, other streams of research have begun to coalesce into a theory that could be even more infuriating to clean air organizers than Rosenstreich’s work. This idea is that asthma is a disease not of poverty but excess–that it’s a side effect of the well-fed, safe, leisurely lifestyles that most Americans lead. It may be what so many of us don’t do–exercise or eat right–that makes us sick, rather than the air we breathe.

The lifestyle theories of asthma are still hypotheses; the kind of work Rosenstreich did to prove the cockroach link is far off. But even as asthma mobilizes communities to fight the powers that dump on them, the blossoming environmental justice movement may have to contend with the possibility that the root of this disease lies not with polluters, but in ourselves.

The alliance between scientists and environmental organizers is already a fragile one. Will the future of asthma research destroy it for good?

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When treated properly, asthma can be brought under control, but as a recent Mt. Sinai Medical Center study emphasized, many New Yorkers aren’t getting the help they need. Hospitalizations jumped almost 13 percent in just four years in the early 1990s. And while doctors agree that no one should ever die from asthma, deaths citywide have increased by 50 percent since 1980.

Attacks occur when an asthmatic gets “triggered” by smelling or breathing in some particular substance like cat fuzz, dust mite feces or truck exhaust. For certain people, even cold air will do it. Usually the trigger itself isn’t very dangerous to the body. But an asthmatic’s hypersensitized body responds to the trigger as if it were being invaded by a hideous and destructive foe. The immune system goes into panic mode, and the lungs seize up, swelling, tightening and filling with fluid.

Doctors and researchers now have a good understanding of what happens during an asthma attack. There’s a growing recognition that indoor contaminants–not just cockroaches particles but also mold, cleaning products and dust mites–are some of the most common triggers. Better drugs can now keep the disease at bay, rather than just treating an immediate attack. From a public health standpoint, keeping asthmatics healthy has become primarily an issue of management: teaching people how to monitor and control the disease and helping them find good doctors and decent health insurance.

But nobody has yet been able to figure out where the disease comes from, or how to prevent it from taking hold in a healthy person. “It’s multifactorial,” the researchers say, meaning that while asthma seems to be loosely related to everything, it’s hard to prove that it’s directly caused by any one specific thing. Scientists have noticed recently that all kinds of allergic syndromes, from food allergies to eczema, have been getting much more common lately, especially in Western countries. Asthma is just one variation.

But that doesn’t explain what’s going on in Hunts Point. Nothing seems to.

At one time, this South Bronx peninsula of poor and working-class families had been more or less abandoned to its industrial tenants: recycling shops, auto glass stores, commercial waste depots and its famous wholesale fruit and vegetable market. The most visible businesses were prostitution and drug sales, catering to the truckers who trundle in and out of the neighborhood.

Then, as the neighborhood improved in recent years, families began moving back. That’s when they noticed that something was wrong. Asthma would take over whole families. Children were getting violently ill, with repeated stints in the hospital. When the principal of P.S. 48 surveyed her students, she found that one-quarter of them had some kind of respiratory problem.

For most parents, dealing with even one severely asthmatic child is a strain, but for a lot of families in Hunts Point it has become a way of life. Jessica Serrano’s 18-month-old son Robert has a case of asthma so severe that someone must constantly keep an eye on him. “He has to be kept away from rugs, anything that can keep dust,” she says. “Outside, it really depends on the weather. With some smells, he’s very sensitive. In the Hunts Point area, it makes it harder. If we go away for the weekend, he won’t have an attack. When we come home, it starts all over again. It’s scary. When it’s a baby, it’s a nightmare.”

Diagnosed with asthma at the age of three months, Robert has been hospitalized a total of six times. He is now on a regimen of a half-dozen drugs. “They started him on Albuterol, where you press the chamber against his face and push the pump,” she says. “He’s also on the nebulizer, also Cromolyn, to prevent the asthma. Also he’s on Flovent, now that I think about it. We’re always walking around with the machine and the pump.”

That’s just the beginning. Virtually everyone in Serrano’s family has the disease. Her other child, 4-year-old Cruzita, has it. So does her mother, who was hospitalized for two weeks in 1992 after a severe attack. Both her brothers and her husband’s sister are asthmatics. And although Jessica Serrano says she breathes fine now, her mother says that she used to have it as a baby, too.

That’s the difference between regular asthma and asthma, Hunts Point style.

Across the neighborhood, her story is strikingly common. Parents consistently say the same things: my kid wasn’t like this when we got here, and when we get out of the neighborhood he gets better. Their children share other disturbing problems, like constant nosebleeds and episodes of vomiting. Nobody can explain why there are so many children with so many of the same problems.

A few years ago, a specially trained nurse who treated asthmatic kids at P.S. 48 wound up developing asthma herself. It was that sense of siege that pushed people in the neighborhood to find out where the problem was coming from.

Potential culprits aren’t hard to find. Hemmed in to the north by the Bruckner Expressway, to the south by a sewage-pelletization plant, to the east by the market, and all around by more than two dozen waste transfer stations that dot the waterfront, the peninsula is a crossroads for nearly all the city’s produce, more than half of the city’s putrescible garbage, nearly all the city’s sewage sludge and as many as two million truck trips a year. Even in smelly New York City, there’s nowhere that compares. In summer the air is truly thick with stink.

For a relatively poor district of only about 10,000, Hunts Point has an unusually energetic, visible activist population and a wealth of health-related programs and initiatives. Community groups like Hunts Point Awareness, Mothers on the Move, the South Bronx Clean Air Coalition and The Point Community Development Corporation have had traffic lights installed, truck routes modified and median strips put in to control truck traffic. They have secured new trees and a waterfront park. Through forums and clever protests, garbage has become a high-profile local issue. And beyond standard leafletting, letter-writing and public gripe sessions, activists in Hunts Point are also doing their own research, like studying traffic patterns to generate a community-based plan and collaborating on a study with Mt. Sinai researchers on asthma interventions.

What all this activism has done is connect the day-to-day struggles of living with asthma to local problems like smells and trucks, and with political decisions about public health and garbage. The Point’s summer student program is a perfect example. Funded by the city Department of Health (DOH), the community group has set up a comprehensive research and study program that combines classroom learning about environmental justice and air pollution with on-the-street air quality monitoring and watchdogging. Some of the kids, uniformed and outfitted with mountain bikes and cell phones programmed to call the state and city environmental authorities, go after the truckers themselves, reminding them to stay on route, keep their loads covered and turn their engines off while waiting. Other students count traffic, collecting data to use in planning projects.

“It’s quality of life, that’s how we look at it,” says The Point’s Brielle Epstein. “Our goal is to improve the quality of life. If kids are getting sick, we have to look at things that affect asthma. We also look at things that make the neighborhood more pleasant, like parks, and also at how parks affect asthma. It’s interconnected.”

Surprisingly, the Health Department sees it the same way. Unlike many city-run programs, its new Childhood Asthma Initiative recognizes the ways that community activism can make the connections between one family’s asthma problems and a public health campaign. The health department is funding seven community groups, including The Point, to set up asthma-focused coalitions, and it is now in the process of expanding its community-based asthma project, pioneered in Hunts Point, to all five boroughs. It’s a holistic approach, combining case management with school-based programs and intense outreach. “Building community coalitions is something the DOH is interested in,” explains initiative director Louise Cohen. “We have a broad vision. It’s not just about a doctor and a family; it’s a supportive system. It’s more difficult to do, but it will yield more fruit.”

It comes very close to an ideal synergy of enlightened city policy and grassroots activism, using organizing to link up individual problems to policy. There’s just one problem: According to what researchers say, it probably won’t do a thing to stop the spread of the disease. What seems painfully obvious in Hunts Point–that bad air is giving people asthma–has so far eluded scientific proof.

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One of the few straightforward facts about asthma is this: At the same time that air has been getting cleaner, asthma has been getting worse. Between 1978 and 1997, concentrations of every outdoor air pollutant dropped significantly (see chart). Carbon monoxide fell by 60 percent. Ozone dropped 30 percent. Since 1989, when the federal government started monitoring particulate matter pollution–the fine soot that comes from diesel trucks and power plants–levels have declined by a quarter. In the Bronx, it’s no different: emissions are down and air quality is up.

It’s the basic paradox of asthma. Everyone can see that pollution is bad for people who have the disease, but no one understands why cleaner air doesn’t lead to fewer cases of asthma. This peculiarity shows up around the world. At the end of the Cold War, the West German city of Munich was prosperous and relatively clean. Leipzig, a poorer East German city that was dependent on dirty-burning coal for fuel and choked with Soviet high-smog industries, had very dirty air. But, as a group of German scientists found out, asthma rates in Munich were 50 percent higher than they were in Leipzig.

There are plenty of other examples. Westernized Hong Kong has more than four times as much asthma as dirty, poor Beijing. Indonesia has little asthma; New Zealand and Sweden, with very clean air, have lots.

Figuring out what’s going on has virtually become an industry. The epidemic has meant boom times for asthma researchers, and in the last year scientists and doctors have published more than 3,000 papers on the origins, character and treatment of the disease. Some grasp at straws: anything that has also been increasing over the last 20 years seems to be fair game. Studies connect asthma to everything from vinyl flooring to maternal depression to live bait.

Two compelling theories stand out from the crowd. Explanation number one: asthma is the price of the good life.

For the most provocative version of this theory, we turn to Dr. Thomas Platts-Mills, the University of Virginia Medical Center’s director of immunology. In the early 1980s, Platts-Mills did for the dust mite what Rosenstreich would later do for the roach–identify it as a major cause of asthma attacks. Back then, he was convinced that the mite explanation would solve the asthma paradox.

Now, he says, he’s at something of a loss. “Just because you know what’s causing the disease, you don’t know why it’s increasing. For many years, I thought the increase in dust mites would explain it across the world. That’s fallen apart. The [asthma] increase has been seen in areas where dust mites don’t grow.”

Instead, Platts-Mills has come to blame what he calls the Annette Funiciello effect. The reason so many kids get asthma, he says, is that they spend too much time sitting around inside. Kids don’t get much vigorous exercise, and while they sit for long hours playing Nintendo or watching TV, they are cooped up with allergens like dust mites, roach droppings or cigarette smoke. It’s a double whammy–their lungs don’t get exercised, and they get a heavier dose of allergens. Asthma is the result.

According to Platts-Mills, his theory also explains why kids in poor city neighborhoods like the South Bronx get it worst of all: because kids living in dangerous areas without many parks or playgrounds have the fewest opportunities to play outside. A study done by the Centers for Disease Control this year backs him up, indicating that in dangerous neighborhoods, 45 percent of people get very little exercise, much higher than the nationwide average of 30 percent. “The Bronx phenomenon is an exaggeration of the world phenomenon,” was how he explained it at last year’s asthma conference at Albert Einstein.

Platts-Mills enjoys playing devil’s advocate–“He’ll take something controversial and say it loudly until someone proves him right or wrong,” says one colleague–and as yet he has no hard evidence to back up this theory. It also leaves important questions unanswered, like why New Yorkers, who do a lot more walking than most Americans, would have so much asthma, or why some professional athletes have the disease. “I don’t know the answer to that,” he admits. “We don’t know how to explain everything.”

But the idea does have some compelling supporting evidence. For example, it appears that the muscular structure of lungs changes in response to hard use like exercise. Other work shows that fat kids are much more likely to get asthma.

The theory also fits in nicely with a fragmentary but growing body of research positing that the increasing rates of asthma are due to a shift in our immune systems, an underlying change that has to do with the way we live in Western countries–in offices, stores and well-insulated apartments, well-fed and largely protected from viruses and diseases.

This counterintuitive idea is that diseases may actually be good for you. We in Western countries no longer live our whole lives in the company of parasites and, thanks to vaccines, don’t have to endure a gauntlet of childhood diseases like smallpox and whooping cough. But, runs this theory, that may also be why we now get so many allergic diseases–perhaps the developing immune system needs to be barraged by the diseases of childhood in order to develop correctly and be able to identify its proper targets, instead of reacting violently to anything from dust bunnies to roaches. One 1997 Japanese study, for example, showed that kids who’ve been exposed to tuberculosis at an early age are much less likely to show an allergic response or to have asthma.

Other observations corroborate the idea. The youngest kids in a family tend to get more respiratory infections from their older brothers and sisters and are less likely to wind up with asthma. Children with eczema, another allergic disease, sometimes go into spontaneous remission after getting a serious viral infection.

But so far, these are all scattered theories, not a coherent analysis. Every researcher has his own variations–Platts-Mills, for example, speculates that antibiotics are a more likely culprit than vaccinations. “Antibiotic usage is like a runaway train,” he points out. “Perhaps in some way we’ve changed the balance in the immune response, and it’s changed the way the lungs behave.” In any case, some version of the Western lifestyle hypothesis is the only one that accounts for the bizarre patterns of the asthma epidemic, and it comes close to explaining why people in Munich, London and East New York are all getting more asthma.

“It’s the one people get most angry about, and therefore most likely to be true,” observes Platts-Mills wryly. “At this point, there is no other coherent explanation. Some aspect of sedentary lifestyle has got to be contributing. It’s the best explanation in the American inner city, where the epidemic is the worst, and we need to address it.”

The “good life” theory of asthma may address the epidemiology of the disease–where it’s found and why–but it has one big problem, says UCLA School of Medicine’s Dr. Andrew Saxon. It doesn’t offer a plausible explanation for how exactly healthy lungs go bad. “Tom likes to stir things up, but it’s very hard to prove,” Saxon says. “It’s a nice theory, but without data, it’s nothing.”

Saxon is trying to answer the same basic question as Platts-Mills: why there’s so much more of the disease. But he goes about it in a very different way. Instead of looking at what populations of people are doing, he looks at what their lungs are doing.

Given the fact that diesel truck traffic has increased as overall air pollution has decreased, researchers have reasoned that diesel exhaust now makes up a greater proportion of the crud in the air. So, following the work of several Japanese teams, Saxon began looking more carefully at what goes on when asthmatics are exposed to diesel. His team squirted ragweed pollen and exhaust particles into the noses of allergic people. Combined, the two nasty gases resulted in a much stronger response than either alone.

“What a diesel engine does is to carry into the air respirable particles which provide oxidative stress and inflammation,” says Saxon. “We’ve been able to show that in the presence of these particles, people make robust allergic responses. If they don’t have the particles, it’s not so robust.” The reason why, conjectures Saxon, is that diesel particles somehow link up with allergens, carrying them deeper into the lungs or amplifying their aggravating effects.

Saxon’s research suggests that asthma may not be a question of cockroaches versus trucks so much as a question of cockroaches and trucks put together. It’s much closer to what people in Hunts Point believe, but it’s inconsistent, too. For one thing, it doesn’t explain why there are such intense pockets of asthma, as in Hunts Point and Jamaica, Queens. Air moves around a lot, and soot gets wafted and eddied and blended across the city, the region and even the nation, explains the Environmental Protection Agency’s Raymond Werner. “Pollution can travel very long distances,” he notes. “About half of the fine particles in the area comes from long-range transport,” from as far away as the Midwest. Trucks also account for only a small part of particulate pollution.

In any case, even if local diesel pollution really is to blame, why is it that Chinatown, with much worse air than East Harlem or Washington Heights, has much less asthma? Why are there so many asthmatics in places where the air is beautifully clean, like in New Zealand and Los Alamos, New Mexico?

Platts-Mills is both impressed and nonplussed by Saxon’s work: “His data are wonderful, but his epidemiology is no good. If you try to explain the situation–here’s why there’s an increase in asthma–you can’t see it. I remain confused.”

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People in Hunts Point don’t wonder where the disease comes from. They get constant signs. “There’s a scrap metal heap through my kitchen window,” says Laverne Davis, who organizes with Mothers on the Move on garbage issues. “When I get up to get a cup of coffee, that’s what tells me good morning through the window. That’s a disgusting sight.”

For a lot of people, Davis included, asthma was a wake-up call. “At first I was not aware of the situation,” says Davis. “Then my daughter ended up in the ICU with a lung infection. She almost died. It woke me up. Here I was, not getting involved.”

One reason organizing has been so successful in Hunts Point is that it feeds off the understandable hatred that people already have for the overwhelming number of trucks and dumps in their backyard. It speaks to the feeling that they are literally being shit on, forced to cope with the entire city’s waste.

Asthma has become a symbol in Hunts Point, a stand-in for all its problems. The fact that there are few trees. The constant parade of loud and annoying trucks–and the memory of the little girl who was run down on Spofford Avenue last year. The smells, and the loose garbage that clings to fences and collects in the gutters. What might be easy to isolate as an asthma problem in the doctor’s office or lab is, in this neighborhood, bound up with the problem of living next door to a cluster of environmental nightmares. For now, environmental justice activism is the only thing that pulls all the pieces together.

“My own personal belief is that the reason why asthma is going up worldwide will turn out to be some factor like Western lifestyle or nutrition,” says Dr. Thomas Matte of the Center for Urban Epidemiologic Studies at the New York Academy of Medicine, which is working on a school-based asthma survey in Hunts Point. “But people are skeptical, when these problems are put forward, that it’s a way of avoiding dealing with the issue they are really interested in. Whether or not they are affected by asthma, nobody wants to live in a community with poor air quality. To tell somebody who lives near the Bruckner Expressway that you need to worry about roaches…I can understand the reaction.”

Depending on where research goes in the next few years, the lifestyle theories of asthma may really catch on. It’s already beginning to happen. In June, when the U.S. Surgeon General gave a press talk at the American Lung Association’s annual conference, he took a page right out of the Platts-Mills book by citing sedentary lifestyles and indoor pollution as likely reasons for the increase in asthma.

That means that the gap between researchers and activists–the divide Rosenstreich accidentally stepped into–could become a gulf. Even before the scientific research to prove or disprove lifestyle theories is done, the idea could have a profound impact on public health policy. Like the cockroach research, it could be interpreted by everyone from Congressmen to activists as turning asthma into a private problem. The premise that asthma comes from personal behavior smacks of a familiar theme of the 1990s, in which public accountability (and government intervention) gets replaced with a story of individual responsibility and personal blame.

It may simply be that the Bronx marriage of medicine and environmental justice was doomed from the start. Processes that are essential to good scientific debate–like suggesting improbable, provocative ideas–can be politically disastrous, points out Omar Freilla, transportation coordinator for the New York City Environmental Justice Alliance. “On the one hand you have a lot of researchers following their own questions, legitimate questions that need to be answered,” he says. “The problem is when you have a good question being asked, but the people who are responsible for implementing some sort of solution purposely put it in a context where they don’t have to do anything. Government agencies don’t want to look at asthma as an air pollution problem because then they’d have to do something about it.” Instead, says Freilla, just as polluters co-opted Rosenstreich’s cockroach study, regulators manipulate studies on indoor air pollution, using them as a dodge.

That gap is hard to avoid. Where organizers think first of power and the possibilities of collective public activity, doctors by training turn to the small, manageable lifestyle changes individual people can control. So while activists fume at factories, doctors are more concerned about getting rid of Fluffy and wall-to-wall carpeting. “A physician talking to a patient can’t do anything about outdoor pollution, so they talk about pollen, mold, mites, roaches. They focus on what an individual can do,” notes George Thurston, an environmental scientist at New York University’s Nelson Institute of Environmental Medicine. “But going into people’s homes is not something government should or could do. When you’re talking in a regulatory forum, air pollution is what they talk about because they can do something about that. What’s important depends on your venue.”

Depending on what happens in asthma research, organizers will be faced with a crucial tactical decision. They may decide to oppose scientists and doctors, their traditional allies in the fight against polluters. Or they can try to strategically repoliticize asthma. Quite a few mothers in Hunts Point concur with part of Platts-Mills’ theory: that it’s hard to find somewhere decent for kids to play. In Hunts Point, with few parks and little green space, asthma will never be just a lung disease. It’s also a rallying cry.