.Waiting to Inhale

It's a killer we seldom hear about, discriminating by race and locale and afflicting more people every year. So why don't we even know what causes asthma?

In the months before his death, things were looking up for Greg Michelson. He and his girlfriend of five years had decided to get back together after some time apart. Michelson had straightened out in middle age after overcoming his share of problems: he had grappled with drug addiction and come clean, ballooned in weight then lost it. Throughout it all — from his days causing mischief at Brown University, to organizing workers at a waterbed factory, to his last job heading the science department of a small Christian college in Oakland — he charmed the people around him with his brilliant scientific mind, sarcastic sense of humor, and quick wit. Michelson, the son of a Holocaust survivor, had always been rich in friends. But none of them were with him the day he most needed help.

On the Tuesday after Labor Day 1999, in the early morning hours, Michelson was alone in his Berkeley apartment on Benvenue Avenue when he began to wheeze. It was a strained, heaving noise that grew increasingly panicked — the sound of someone trying to breathe who couldn’t.

As usual, he had left the windows and doors in his home open so fresh air could circulate throughout. But that didn’t help. The muscles enveloping his airways continued to squeeze hard: too hard. His chest retracted violently, his stomach sucking up into his ribs. Michelson kept an inhaler around for emergencies like this, but it was empty. He had run out of medication the previous evening after spending the holiday on the windy beaches of Point Reyes. Unable to talk, he banged on his neighbor’s door for help, only to suffocate on her step before she opened the door. He was 41.

“For this to happen was such a tremendous shock,” says longtime friend Stephanie Burns, who was so shaken by his death that she ended up in the hospital herself. “There’s death when it’s supposed to happen or when it’s in its time. And there’s death that’s not supposed to happen. That’s how this was. It wasn’t supposed to occur at all. There was something really wrong about it.”

His killer, asthma, isn’t a disease most people think about. It rarely grabs headlines the way AIDS and cancer does. It has no ribbon campaign and most people don’t think of it as fatal. But it is. Asthma kills about 5,400 Americans every year. While it is often regarded as a childhood disease, the mortality rate is higher for adults than children. And while it claims far fewer casualties than big hitters like AIDS, which killed 14,802 in 1999, AIDS deaths have slowed in the United States, while asthma fatalities have tripled since 1977 and continue to rise. The number of deaths is both alarming and tragic because no one should die from asthma; it is a relatively manageable disease.

It is also a serious public health issue in California, where dirty air exacerbates breathing difficulties for the nearly three million state residents who suffered from asthma symptoms last year, the California Health Interview Survey reports. The state dominates the American Lung Association’s annual ranking of counties with the highest ground levels of ozone — a pollutant that can trigger asthma attacks. Eleven of the nation’s 25 worst counties for ozone contamination are in California.

In Alameda County, which ranks second in the state for asthma hospitalizations, this disease is the leading cause of hospitalization among children four to fourteen. The county also has more than its share of fatalities. While the national death rate averages less than two people per county per year, Michelson was one of 38 Alameda County locals who fell to a fatal asthma attack in 1999.

In spite of improved medications and treatment, the prevalence of this disease has doubled worldwide in the last fifteen years, according to the National Heart, Lung, and Blood Institute. Some 17.3 million Americans suffer from the chronic disease today, and if current trends continue, a recent Johns Hopkins University study warns, cases could double by 2020. Asthma also discriminates. Most at risk are African Americans and children. Blacks die from asthma at a rate twice that of whites and three times that of Latinos. And black children are four times more likely than white kids to die from asthma.

With an epidemic on our hands, local health departments and coalitions are cobbling together education and outreach programs. In West Oakland, residents are rallying around air quality and environmental justice. Yet, with so many people struggling to breathe, researchers still don’t know exactly what, or whom, to blame for asthma’s dramatic rise.

If you want to know what an asthma attack feels like, talk to Margaret Gordon. The 55-year-old West Oakland resident has had more than her fair share. “It feels like somebody’s standing on your chest and everything feels squeezed,” she says. Like the majority of asthmatics, Gordon also has allergies. It’s a bad combo: Her throat swells up. Welts rise all over her body. Her hands turn red. And an unbearable urge to scratch overcomes her.

“I feel itchy, itchy, itchy! Like it’s a thousand ants running all over you,” she says, sitting in the hollow room that serves as the offices of the 7th Street McClymonds Corridor Neighborhood Improvement Initiative where she works as an outreach coordinator. Minutes later, she notices a trail of ants weaving across the carpet. She rummages on a shelf for a spray bottle and attacks with a mixture of vinegar and soap. Gordon can’t use insecticides, certain cleaning products, or perfumes because they trigger her allergies, which in turn could trigger an asthma attack.

During an attack, the muscles around the bronchioles (the small breathing tubes in the lungs) constrict the flow of air. Emergency medications known as bronchodilators, such as Albuterol, loosen the grip instantly. But even when they’re not suffering through an attack, asthmatics’ lungs have another problem: inflammation. Cells inside the lining of the bronchioles overproduce mucus, clogging the passageways and causing constant irritation. For that reason, asthmatics should also take preventative anti-inflammation medications daily.

Gordon carries three different inhalers with her. But even though she keeps her asthma in check, it still controls many aspects of her life. It can keep her up at night and it limits her physical activities — exercise triggers attacks in some people. Even something as simple as a turtleneck can bother her. “Tight clothes? Oh no!” she says with her eyes closed, as if summoning the words from deep inside her body. While Gordon now visits a doctor regularly, many of her West Oakland neighbors don’t have access to proper health care — one reason they frequently end up in the hospital.

Mindy Benson, a nurse practitioner at Children’s Hospital Oakland, coordinates the asthma program at the hospital’s ambulatory clinic on Claremont Avenue. “It’s a rare patient who comes here for the first time that hasn’t been hospitalized,” she says of the program’s clients. “It’s fairly unheard of that they haven’t gone to the ER once.” She estimates that ten percent of the ten thousand Oakland kids who visit the clinic have asthma.

Local asthma sufferers of all ages are most likely to end up at Children’s, which registers the highest number of asthma hospitalizations of any Oakland facility. Hospitalization records, however, represent only the most acute cases and provide an incomplete picture. Though the government keeps close tabs on other illnesses, no surveillance system exists for asthma. The state will soon collect emergency-room data but currently only tracks hospitalization. Short of knocking on doors, there’s no way to know precisely how many people suffer from asthma.

The best indication comes from the California Health Interview Survey, which conducted phone interviews with more than 55,000 households in 2001. From this data, the researchers estimated that 11.9 percent of Californians have been diagnosed with asthma at some point in their lives, compared to a national average of 10.1 percent. At the county level, the study found that Solano and Marin had the Bay Area’s highest prevalence. However, unlike Alameda County, both counties register fairly low when it comes to hospitalization.

Genetics play a part. If one or both parents have asthma, their kids are significantly more likely to have it. Still, because the gene pool changes very slowly, genetics alone cannot explain the rapid rise in its prevalence.

“I’ve seen not so much an increase in families who have asthma, but an increase in the number of kids who come from families who don’t,” Benson says. “I ask, ‘Do the parents have asthma?’ ‘No.’ ‘Do the grandparents?’ ‘No.’ Nobody in their family has asthma. God! What’s going on? Why are all these kids getting asthma who have no family history? I think we all know what’s causing it. It’s pollution. Our immune systems are not working so well because of our polluted world.”

Though she makes an educated guess, it’s just that — a guess. Several studies have linked air pollution and the nasty stuff in it — ozone, sulfur dioxide, and particulates, to name a few — to respiratory problems and decreased lung capacity. One study, conducted by the Centers for Disease Control and Prevention, found that when Atlanta reduced traffic during the 1996 Summer Olympic Games, the number of children needing emergency care for asthma fell dramatically. Yet little definitive evidence exists to prove air pollution actually causes asthma.

“We don’t have any objective data,” Benson explains. “We have anecdotal data, like when a container ship comes in and all the trucks are sitting all night long with their engines on, the next day the ER is filled. All that diesel was in the air. But that’s subjective. No one is out there measuring carbon particles.”

Only one study to date, conducted by the University of Southern California and released this year by the California EPA’s Air Resources Board, has gathered evidence that smog causes asthma. The researchers tracked 3,535 Southern California children with no history of asthma for more than five years. Those who lived in high ozone areas and played three or more sports developed asthma at a rate three times higher than those in low ozone regions. Because exercising can cause a child to draw up to seventeen times the usual amount of air into the lungs, young athletes were more likely to develop the disease.

The rise in asthma rates probably has several causes. The most likely explanation is a complex interaction between environmental and genetic factors. Studies have identified indoor allergens and tobacco smoke exposure at a young age as risk factors, and researches have postulated all sorts of theories — from diet to hygiene.

One hypothesis contends that because kids spend more time indoors with their TVs and PlayStations these days, they are more likely to become obese, a risk factor for asthma. Other researchers believe unhealthy eating habits are to blame and that certain foods make for a cleaner immune system, protecting children from asthma.

The theory that seems to have gained the most acceptance in the medical community is the so-called hygiene theory. “Basically the concept is that infections early in life — including respiratory and gastrointestinal — stimulate the immune system in a way that tilts it away from developing asthma and allergy,” says Michael Lipsett, associate clinical professor at UCSF School of Medicine. “So if you live in an environment where there is better overall hygiene — not just in your kitchen or bathroom, but where it’s a cleaner environment socially, for instance with clean drinking water distribution systems — in theory you’re not going to get as many serious infections in early life. And therefore you don’t get the boost to the immune system. Thus the increased risk of developing allergy and asthma may represent an ironic consequence of improving public health.”

Monsa Nitoto has his own theories on why asthma so plagues his West Oakland neighborhood. “Here’s where the trucks line up,” he says, driving swiftly along a stretch of road that serves the Port of Oakland. He then maneuvers his Jeep over curbs and around gates to get to the port’s new lots, currently half- constructed and barren. Nitoto is not the kind of person who does as he’s told. If a street sign says “No Entry,” he’ll find another way in. As director of the Coalition for West Oakland Revitalization, Nitoto has to be resourceful.

“We’re going to have a new game that you might call Truck Tag,” he says cheerfully in his raspy voice. The game targets the many trucks doing business with the port that travel illegally down West Oakland’s residential streets, spewing fumes. Nitoto’s game goes like this: When a truck rolls through the neighborhood, residents jot the license plate number down and report it to the authorities. Whoever makes the most reports will win a prize to be given away at the annual neighborhood Clean Air Festival in September.

According to the Port of Oakland, diesel trucks make more than ten thousand trips each day through West Oakland, which flanks the port and is bounded by highways on several sides. With the port’s planned expansion, daily truck trips are projected to double to 22,000 by 2020. Diesel exhaust aggravates asthma and contains 41 toxic air contaminants, including acetaldehyde, benzene, and arsenic. And why, Nitoto asks, should West Oakland bear the brunt of the increased pollution while the rest of the city benefits? That’s why his organization is pushing for a fee of $1 per truck to fund traffic mitigations and neighborhood restoration projects.

The high asthma hospitalization rate in West Oakland and other low-income communities of color highlights the disproportionate impact the disease has on the poor, says Wendell Brunner, director of public health for Contra Costa County.

“Even if you have asthma, even if there’s a lot of asthma in the community, if people have access to primary outpatient care, they shouldn’t end up hospitalized and in the emergency room,” he says. “Hospitalization is a marker for lack of access to primary health care.”

Consider the fact that no pharmacy or big grocery store exists in West Oakland, much less a pulmonary specialist. Inhalers can cost between $50 and $70 each, and using them correctly isn’t easy: a person must inhale at just the right moment to ensure the dose hits the lungs, not the stomach. With so many meds and so many different ways to take them, patients often become confused without proper guidance. “It’s a disease of the urban poor,” says Meena Palaniappan of the Pacific Institute, a think tank based in Oakland.

Working with community groups, the institute collected and analyzed data on West Oakland and published it in a report called the West Oakland Environmental Indicators Project. The report found that while toxic emissions have fallen citywide since 1995, they have increased dramatically in West Oakland, which by 1998 accounted for nearly half of the city’s toxic releases. The largest polluter in West Oakland (and one of the six biggest in Oakland) is Red Star Yeast factory, according to the Toxics Release Inventory, an EPA database established under the Emergency Planning and Community Right-to-Know Act of 1986. Although no one has studied the plant’s effect on its neighbors, it releases roughly thirty thousand pounds of acetaldehyde each year. Acetaldehyde, which forms when sugar is metabolized by yeast during fermentation, causes respiratory and cardiovascular problems, says the EPA. The state of California puts it more bluntly, calling the pollutant a “known carcinogen.”

Nitoto, who has organized protests outside the plant, stops outside its tall chain-link fences one afternoon to peer at its stacks. As he dramatically holds his nose, the door to a semi-truck parked in the plant’s driveway pops open. Its driver, a tough-looking, ponytailed man clad in a Marines T-shirt and leather vest, hops down from the cab and approaches Nitoto. The two begin to argue loudly, the trucker defending the century-old plant against Nitoto’s assertions that it causes cancer, asthma, and who-knows-what else.

“That’s just like moving near an airport and complaining about the noise,” the trucker says.

But poor people often don’t have the luxury of moving away, especially in the Bay Area’s housing market, Nitoto points out. He’s not pulling assertions from thin air. In 1998 West Oakland children were seven times more likely to be hospitalized for asthma than the average California kid, according to the Pacific Institute report.

West Oakland isn’t the only part of Alameda County with bad asthma. Though state data doesn’t drill down below the county level, one group, the Regional Asthma Management and Prevention Initiative (RAMP), broke down hospitalization data from 1994 to 1996 by zip code to obtain a clearer picture. Fruitvale, the Coliseum area, 98th Avenue, downtown Oakland, and Emeryville all had high asthma rates. What stands out on a map are the eastern parts of Alameda County along the bay, the southeast portion of San Francisco County, and Richmond and Concord in Contra Costa County.

“Notice when you look at the numbers, it’s along the 880 corridor,” says Palaniappan. “When you look at the numbers and where they are located according to zip code, it’s definitely an environmental justice issue.”

Studies confirm her assertion. In 2000, Communities for a Better Environment worked with youth living in the Bayo Vista housing project, located alongside the Phillips oil refinery in Rodeo, to conduct a health survey. Though not scientific, it found asthma in half of the households questioned. Investigators have also compared people’s health before and after a 1994 chemical release at the Unocal refinery in Crockett and concluded that health problems, including respiratory ailments, were linked to that exposure.

Still, it is difficult to trace sickness to specific refineries, and chemical exposure is just part of the asthma puzzle. Home and school environments are also important, says Chuck McKetney, an epidemiologist for Contra Costa County’s health department. Just compare Contra Costa and Alameda counties, he says. Contra Costa has all the refineries, but Alameda has the higher asthma rate. The prevailing wind in Contra Costa might have something to do with that because it comes off the bay and pushes up the Sacramento River, he says.

“There’s no doubt in my mind that it’s a bad combination to be living in an area where there’s a lot of refineries that have releases and do probably make asthma worse for people who have asthma,” says McKetney. “But whether or not somebody who is otherwise healthy and starts living in that area would get asthma, I don’t know. There hasn’t been any kind of study that gives us that evidence.”

The lack of studies is one thing that troubles Meena Palaniappan. “It’s curious they have so many studies on indoor air pollution, and it’s worth noting who funds a lot of these studies,” she says. “The question needs to be asked, how big is the role that outdoor air pollution plays, and why isn’t it studied more?”

One reason for the scant research on these environmental factors is that a large number of these studies are funded by drug companies, which prefer to look at the more profitable treatment end of things rather than prevention and etiology, or cause, of a disease. “That’s the case with almost every disease,” says Adam Davis, program director of the American Lung Association of the East Bay, who points to AIDS as an example. More money goes into researching HIV medications than creating a vaccine, he says. “If we put more money into prevention, we could prevent hospital bills,” Davis says. “The reason why so much money is put in treatment is that’s where the money is to be made for pharmaceutical and biotech firms. They can sell the treatment, but they can’t sell the prevention.”

The biggest funder of etiological research is the federal government. Three entities, all within the National Institutes of Health (NIH), provide most of the funds: the National Heart, Lung, and Blood Institute (NHBLI); the National Institute of Allergy and Infectious Diseases; and the National Institute of Environmental Health Science.

Yet even the government seems to favor treatment research. The Pew Environmental Health Commission published a report with the Johns Hopkins University School of Public Health in 2000 that evaluated the government’s response to the asthma epidemic. It found that, of the $125 million budgeted for asthma research in 1999, less than seventeen percent was dedicated to the study of asthma etiology. Less than nine percent went to research on prevention and less than one percent to tracking the disease. The remainder — more than seventy percent — was spent on treatment and biomedical research to identify the basic cellular processes and mechanisms.

The commission sharply criticized the Department of Health and Human Services, the nation’s public health agency, for not doing enough when it came to asthma. But James Kiley, director of the division of lung diseases at the NHBLI, considers the spending balanced. “It depends on how you categorize the different grants. One person may look at a grant and say that’s preventive and someone else may say, ‘Yeah, but it has some small protocol looking at one treatment versus another so that can be categorized as treatment,'” he says.

Kiley points out that the NIH has increased funding for research over the last decade. In the fiscal year 2001, it spent $140 million, he says.

Yet some types of research still get more attention than others, says UCSF asthma researcher John Balmes. “More money is geared towards understanding the genetics of asthma because that’s sexy right now,” he says. “People are trying to connect diseases with genes, and asthma gets caught up with that.

“Etiological studies by their very nature are expensive and take a long time,” Balmes adds, noting that clinical research usually costs less. “There’s a tendency to fund things where you can get a bang for your buck quicker.”

Research funding also has a political element, says Tina Cosentino of Communities for a Better Environment. “I think it’s very political to do any proof that asthma is directly related to pollution,” she says. “It’s not that health agencies aren’t interested — they are. It’s just in terms of where funding gets allocated, these agencies get lobbied by a lot of these big companies. It prevents them from finding correlative evidence.”

Attempts to link health problems to pollution, and hence to auto- and industrial-emissions regulations — or lack of them — indeed make for political games. One need look no further than the White House, which recently proposed a “Clear Skies” initiative to relax pollution standards for utilities upgrading old power plants. EPA administrator Christie Whitman, armed with computer projections, claimed such a move would actually improve national air standards for fine particles and ground-level ozone, as well as reduce the number of children hospitalized for asthma.

Cosentino says regulations are already minimal on factory smokestacks, release valves, and industrial flares — chimney-like chemical incinerators. Communities for a Better Environment has pressured the Bay Area Air Quality Management District to assess the amount of local pollution from these sources.

But sometimes the government fails to keep tabs on the data it already collects. Although air district inspectors check on plants and take their own samples, some data, such as the Toxics Release Inventory, are self-reported by polluters. Consider the TRI numbers for the Red Star Yeast factory. From 1994 to 1996, Red Star reported emissions of fewer than 2,000 pounds of carcinogens per year. By 1998 it had jumped to 33,000 pounds. Palaniappan of the Pacific Institute asked company representatives about the disparity. She says they told her they mistyped the numbers for those years, and that in fact the numbers had always been around 30,000 pounds.

Plant manager Mike Cunningham says he can’t verify this, but agrees that emissions have been stable. “I have no idea why they were that low. Nothing has changed after that time to make it increase,” he says. In any case, he adds, the plant has significantly reduced emissions since Lesaffre Yeast Corporation bought Red Star in February 2001.

Still, the incongruity frustrates Palaniappan. “I don’t want to say they lied, but they misrepresented their emissions,” she says, emphasizing that the mistake went unnoticed by the EPA. “The bottom line is that the hands of public-interest organizations and community organizations are tied because we rely on information that we’re now told is misrepresented and inaccurate.”

Jordon Davis neither knows nor cares about such matters. He’s too busy decorating a playmate’s face with stickers as Amy Sholinbeck gingerly quizzes the three-year-old’s mother, Letrice Harris.

“Does his school have his inhaler?”

“Oh yes, they know all about it.”

“Does he play in the dirt?”

“He loves dirt,” says Letrice. “Should he wear a mask?”

“No, but make sure it’s wet so there’s less dust.”

“He loves it wet because that’s where he finds worms,” mom says with a smile.

Sholinbeck, an asthma coordinator from the Alameda County Public Health Department, is trying to solve a mystery: Why does Jordon cough and spit up mucus more since he and his mother moved from an apartment to a house in East Oakland?

Jordon has had asthma ever since he was born, but Letrice didn’t recognize it at first. She thought her son had a bad cold, maybe pneumonia. When Jordon was eight months old, she took him to Children’s Hospital Oakland. They kept him overnight and sent him home with a nebulizer, a machine that dispenses medicine as a mist that can be breathed in. This past Fourth of July was the first holiday of his life that Jordon didn’t spend in the emergency room.

Through another program Letrice, a single parent, learned of Asthma Start, run by the hospital and county health department. It provides in-home asthma education to families with children up to age five. The first time Sholinbeck visited Letrice, she discussed common triggers for asthma: dust mites, cockroaches, cigarette smoke, mold, and sometimes perfume and cleaning products. On a subsequent visit she brought a specialized vacuum cleaner and dust-mite-proof bedcovers, free of charge.

The asthma epidemic has not gone unnoticed by local health departments and organizations, who in recent years have developed various programs to fight back. This year California Endowment, a health foundation, announced the launch of a three-year statewide program called Community Action to Fight Asthma that will distribute $12 million in grants. Contra Costa Health Services received some of that money, plus other grants — a total of more than $1 million over three years — to pay for outreach workers, asthma coalitions, and improvements to clinical care.

The Ethnic Health Institute also received money from California Endowment to develop an education program for middle- and high-school students. Because deteriorating homes can develop mold and other problems, the Alameda County Lead Poisoning Prevention Program plans to fix up homes in West Oakland with funds from the Department of Housing and Urban Development. And the year-old West Oakland Asthma Coalition, funded by RAMP and housed at the Prescott-Joseph Center on Peralta Street, offers educational classes twice a week. Its director, retired physician Washington Burns, hopes to see an asthma treatment clinic open in this community.

On her latest visit, Sholinbeck teaches Letrice a breathing exercise to teach to Jordon. She tells her to encourage him to breathe from his nose, not his mouth. She explains the diet theory, and asks how often they eat at McDonald’s. (Twice a week.) Maybe she should cook at home more often, the health worker suggests.

What about trees? Letrice offers. More trees line this street, and maybe they irritate Jordon’s lungs. Or chalk? Jordon loves to draw with sidewalk chalk. She just finished washing the driveway down.

Sholinbeck tells Letrice to try an experiment: Limit the chalk and dirt. “Try it for two weeks and see what happens.”

Like the researchers and doctors studying the epidemic, public-health workers like her can only make educated guesses. How can she prevent asthma in Jordon and other children if its causes aren’t even understood?

As she continues with a list of suggestions, Jordon trundles in and out of the room, his strained breathing audible. On one of these occasions, the mother grabs her boy and holds on to him for a minute. Then, as she often does, she puts an ear to his back, and carefully listens.


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