Waiting to Inhale

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http://eastbayexpress.com/issues/2002-08-07/feature.html/print.html

From eastbayexpress.com

Originally published by East Bay Express Aug 07, 2002

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?

By Hung

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

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 s 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 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 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 , 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, " 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 s 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 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 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 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 .

" 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-ph 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

Mc'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.

E-mail: melissa.hung@...

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