Waiting to Inhale

Dr. Karen Malamut teaches Kayla Bass, a fourth grader, to use an asthma inhaler. Malamut sees hundreds of Chicago children every year in an asthma clinic on wheels. (Photo by Mary Hanlon)

Dr. Karen Malamut teaches Kayla Bass, a fourth grader, to use an asthma inhaler. Malamut sees hundreds of Chicago children every year in an asthma clinic on wheels. (Photo by Mary Hanlon)

Chicago is so commonly called an epicenter of the nation’s asthma epidemic that it’s become a cliché. The area’s public health departments all know this.

Most of them just aren’t doing much about it.

An investigation by The Chicago Reporter and Chicago Parent has found that, years after the area attracted national attention for its high asthma rates, little has been done by government to counter a disease that doctors say can be managed, treated and prevented.

While government health departments are active members of asthma coalitions and collaborations, private and nonprofit programs are leading the way in outreach and education to families.

The joint investigation found that local and state governments are not following federal guidelines about the disease. Little money is spent on prevention and education.

The city of Chicago and most of the collar counties have no centralized asthma programs, and the state does not keep an up-to-date count of how many children have the disease.

Indeed, the most comprehensive counting method finds children only when their asthma is severe enough to send them to the hospital.

What numbers are available suggest that suburban Cook County and the city of Chicago have staggering rates of kids with serious asthma. In some areas, one out of 100 children, on average, is hospitalized for asthma each year.

“I’ve been at the health department since 1990, and we’ve never had an asthma program or anything remotely like that, so what we do on asthma is here, there and everywhere,” says Tim Hadac, public information officer for the Chicago Department of Public Health.

The same words could come from most of the other public health departments in the six-county metropolitan area—despite recommendations from the federal Centers for Disease Control and Prevention that local health departments combat asthma by collecting data and providing appropriate education and treatment.

None of the health departments in the Chicago area have allocated the resources necessary to fight a disease that each year hospitalizes thousands of children.

The disease is a growing problem for all children nationally, and especially in low-income, African American communities.

But few health departments have followed the CDC’s guidance to reach underserved children through their schools. Even fewer provide expanded access to care and medication.

Dr. John Wilhelm, the city’s public health commissioner since 2000, says he’s aware asthma rates remain high in poor and black communities, but he wants more study before committing the department to additional work in those areas.

He plans to add a staff person next year to compile data and get “a handle on the picture in Chicago” of chronic diseases such as asthma, diabetes and obesity. “Why did this take me three years to get to this?” he asks. “There’s just been so much other equally important work to do.”

Most area departments do not know how many people have asthma, where they live or how serious their cases are. “There should be outrage that this isn’t being addressed well in Chicago,” says Sandy Cook, chair of the Chicago Asthma Consortium, a group of health care providers and advocates working to promote asthma education. “We have children dying, and it seems like, ‘Oh well.’ That’s offensive to me.”

The joint investigation also found:

* Asthma strikes black children the hardest, yet no one in the area conducts ongoing surveillance of child asthma rates by race or ethnicity.

* The state spends little on asthma. The Illinois Department of Public Health budgeted $700,000 in the last fiscal year for asthma programs. By comparison, it set aside $1.7 million for telecommunications service in 2004.

* No standard exists for data collection among local health departments. Many have no knowledge of what statistics are available from the state.

State Sen. Mattie Hunter, who’s from a district on Chicago’s South Side with high asthma rates, sponsored a law that took effect in August. It uses a portion of the state’s tobacco settlement money to fund a statewide asthma plan that has been languishing.

An asthmatic herself, Hunter says she knows of numerous nonprofit programs to help children with the disease, but the public response needs to be better organized.

“I know everyone is talking about budgets, budgets, money, money, but, if everyone would get together and pool their money for a coordinated effort, we could have a major media push on this and do some education,” she says. “We need to do more.”

“Whatever we’ve done hasn’t worked,” agrees Dr. Alyna Chien, a pediatrician at The University of Chicago Children’s Hospital, where about a third of all admissions are for the disease.

Pediatricians Alyna Chien (left) and Nanah Park have seen too many kids dangerously ill from asthma, which accounts for a third of all admissions to The University of Chicago Children’s Hospital. (Photo by Josh Hawkins)

Asthma is hard to track because doctors have no single test for determining when someone has it, so they rely instead on patients to describe their symptoms and experiences—and this is tricky when kids are involved. In some cases, the disease causes attacks, when it is difficult to catch a breath. Most often, it shows up as a nagging cough that last for weeks.

That’s the case with 10-year-old Alexandra Rueda. She and her twin sister, Adriana, are getting checkups inside the Loyola Pediatric Mobile Health Unit—a recreational vehicle that houses a medical clinic. On this day, the van is making its monthly stop in west suburban Forest Park.

Both girls have long straight hair and dimpled grins. They’re friendly, polite and healthy—it seems. But Alexandra has a persistent cough, “like huh, huh, huh,” says her mother, Mary. No runny nose, chills or any other signs of a cold.

Dr. Francis Orzulak, the clinic’s pediatrician, recognizes the symptoms and pulls out his stethoscope to listen to Alexandra’s lungs. Nurse Susan Finn then leads her to a breath capacity machine that looks like a bugle hooked to a laptop.

Finn punches in some key information—54 inches tall, 92 pounds—and urges Alexandra to: “Fill your lungs with air and blow! Blow! Blow!” Finn and Orzulak look at the results on screen.

The doctor turns to Alexandra’s mother: “It looks like she has asthma.”

The clinic staff is used to such cases. In the mobile unit’s six years, the staff has diagnosed about 2,000 children with asthma, according to manager John Zinkel.

Asthma is disturbingly common among children. The 2002 National Health Interview Survey, a project of the CDC, found that 12 percent of all children under age 18 were asthmatic, and half had suffered an attack in the previous year. Black and low-income families get it far more often: 18 percent of black children had been diagnosed with asthma, and 9 percent had suffered attacks, versus 10 and 4 percent for Latino children, and 11 and 5 percent for whites.

The asthma rate was also higher for kids from families whose incomes were less than $20,000 a year. Poverty, experts believe, leaves families with inadequate health care and crowded housing that’s more likely to have asthma triggers such as cockroach feces and dust mites.

The costs are high. In 2000, 223 children nationwide died of asthma, triple the number 20 years earlier, according to the CDC.

It also takes an economic, medical and social toll. As many as 14 million school days are missed each year by kids fighting asthma, costing billions of dollars in health care expenses and missed workdays for parents.

According to years of studies, Chicago has some of the nation’s highest asthma rates. Studies conducted throughout the 1990s revealed wide racial gaps in asthma morbidity—a measure of whether a disease becomes so serious it interrupts everyday life—and mortality.

And a 2004 Sinai Health System report on six Chicago neighborhoods found a quarter of all black children and a third of all Puerto Rican children had asthma.

Between 1998 and 2002, Cook County children under age 15 were hospitalized for asthma at an annual rate that is more than twice that of collar counties, a Chicago Parent-Chicago Reporter analysis of state hospital statistics shows; the rates essentially mirror county-by-county black population rankings. Similarly, in the city, 2001 hospitalization rates—one measure of morbidity—were highest in predominantly black neighborhoods on the West and South sides.

“The racial, ethnic and socioeconomic disparities in asthma morbidity and mortality suggest that we are doing something wrong here,” says Dr. Victoria Persky, professor of epidemiology at the University of Illinois at Chicago’s School of Public Health, who has studied asthma extensively.

Not that the suburbs are asthma-free: When the Wheaton-based Suburban Asthma Consortium screened West Chicago junior high school students for asthma, 14 percent had the disease.

The Sinai study’s lead author, Steve Whitman, director of the Sinai Urban Health Institute, says no one—in Chicago or across the country—has a system for tracking who has asthma.

“I or anyone else could get [a system] up in a day, but we don’t want to pay the money,” says Whitman, who was head of epidemiology at the city’s health department from 1991-2000.

Some health departments rely on hospitalization numbers, which have serious shortfalls, Whitman says.

For one, they don’t include a race or geography breakdown. For another, they don’t say how many people have asthma and weren’t hospitalized. “If there were 100 hospitalizations, you don’t know if that’s 100 people admitted once or four people admitted 25 times each,” says Whitman.

While the causes of asthma are not fully understood, doctors and advocates emphasize that the disease is manageable with proper treatment and education. But this isn’t always happening in Chicago.

Kathleen Cagney, an assistant professor of health studies at The University of Chicago, attributes this to the social fabric of the city’s neighborhoods. The closer people feel to their neighbors and institutions, the more they improve housing conditions, access medical care and build a network of support, she and colleague Christopher Browning, assistant sociology professor at Ohio State University, found in a Chicago-based study published earlier this year.

“It may be the structure of the community itself that affects whether people know about asthma, because if there’s not a lot of trust,” Cagney says, “they’re not sharing information about where to get [asthma] inhalers or the best doctors for the condition.”

In 2002, the state’s health department released “Addressing Asthma in Illinois,” outlining its goals of creating a body to gather asthma numbers; analyze asthma rates by sex, race, ethnicity, age and income; and ensure “standard and consistent” data collection throughout the state. In 2003, the CDC issued a set of guidelines for health departments. Data collection is the first step toward making “sound decisions when developing asthma programs,” according to the CDC.

At this point, the state is not close to reaching many of its benchmarks. No asthma information warehouse has been formed. No one in the region maintains comprehensive, detailed figures on asthma in children.

The state keeps records on child hospitalizations, ambulance visits and deaths, but the death rates listed on its Web site are six years old. Nor are the data broken down by race, ethnicity or income. But Cheryl Lee, manager of the state’s asthma program, writes that the state has more up-to-date information that hasn’t been posted on the Web.

The Illinois Department of Public Health recently assigned a staff member to analyze numbers, but a state-formed volunteer committee assigned to gather data from researchers and advocates has struggled with “getting people together and making some decisions,” says Debra McElroy, the committee chair and executive director of the Suburban Asthma Consortium.

State officials acknowledge the data program is not up to par, explaining it has received funding for only four years. Many county agencies, however, aren’t even aware the state keeps numbers. While Cook County and Chicago officials provided their own analyses of state-collected hospitalization data, officials from Kane, Lake, DuPage and McHenry counties reported they had little up-to-date asthma information. Setting up and maintaining more comprehensive systems would cost too much, officials say.

And the city’s child hospitalization rates appeared modest—no higher than about 30 per 100,000 children—because its analysis included adults.

When hospitalizations of children are compared with the population of children, the rates skyrocket—as high as 970 hospitalizations per 100,000 kids on the Near West Side.

The city also provided an analysis concluding that black areas accounted for almost six times the number of asthma hospitalizations that white areas did.

Yet the analysis didn’t include racially mixed areas, which are more than half of the city’s population. Nor did it examine the numbers by age.

“I think it’s clear that the epi[demiology] work CDPH has done is substantial and is giving us a better understanding of the issue,” writes the department’s Hadac when asked about its data analysis.

Cook County’s Dr. Jay Shannon says he’s able to keep abreast of local trends by following studies like Sinai’s and staying in touch with the doctors who treat patients at county clinics.

“In a perfect world, would I like to have more information? You bet,” says Shannon, associate chairman of medicine for respiratory and intensive care medicine with the county’s Bureau of Health Services. “But, by using these same kinds of pieces together, we know what we’re dealing with, and we certainly know whether things are getting better or getting worse.”

Local funding and program organization are almost as spotty as data collection. The state spent $700,000 on asthma in the 2004 fiscal year—money from a federal grant, not the state’s general revenue fund.

Even though tobacco smoke is a known asthma trigger, no money was pulled from the $304 million in tobacco settlement money available to the state in 2004. Hunter’s legislation should change that in future budgets.

State officials are vague about spending. When asked for a detailed breakdown, the health department provided a list of organizations and counties that had received grants in 2000 through 2004. But the grants added up to just $408,000. The state’s Lee writes that the rest went to cover “staff and costs needed to support the program.”

About $86,000 of the state’s 2004 asthma money went directly to health departments or private organizations in the Chicago metro area, while $90,000 went to downstate counties, even though nearly three-quarters of all asthma hospital patients are from the six-county area.

“With multiple resources available in Chicago and other areas, funds are used to assist areas of the state that have limited or no resources available,” Lee writes.

She adds that the Chicago Asthma Consortium and other coalitions receive funding “to identify priorities and high-risk groups” such as children and black communities hit hardest by the disease.

Local health department funding varies widely. Over the last five years, Cook County has spent between $500,000 and $1 million a year for asthma education and research, nearly all of it paid for with grants from the federal government and private foundations.

The biggest project, $500,000 a year through 2007, teams the county’s John Stroger Jr. Hospital with Northwestern University to study race and income disparities.

In addition, the county runs four-day-a-week “asthma specialty clinics” in two of its hospitals.

It could not supply budgets for the clinics.

All of this is run through the county’s hospital system; the Cook County Department of Public Health is not involved. “We don’t do asthma here,” says Kitty Loewy, the department’s communications director.

Shannon, the county’s chief respiratory doctor, says the clinics provide treatment and education to thousands of uninsured asthma families.

But they do not have the resources to blitz hard-hit communities. “The clinics are not a big enough megaphone to get that message out,” says Shannon, one of the principal investigators in the joint racial disparities study. And, he says, even if more funds were available for education, it’s not clear how they would be best spent.

Four of the five collar county health departments could not provide asthma funding numbers. In each case, staff explained the departments had no centralized asthma programs.

Chicago’s Hadac offered a similar response—seven weeks after receiving a Freedom of Information Act request for data and budget information.

“We have no specific asthma office or asthma activities,” he writes. “So calculating what we do (both from a programmatic and budget perspective) is challenging, to say the least.”

Hadac adds that the department’s seven neighborhood clinics have treated patients with asthma and distributed educational literature for at least a decade. Also, the department’s physicians and nurses receive asthma training.

Wilhelm, the city’s health commissioner, says his staffer will study and publicize asthma rates, engage in legislative advocacy and determine what resources are offered by others.

“I don’t want to rush to programs and miss the opportunity to describe the big picture in the city. Once we know who’s out there and who’s doing education, we don’t have to reprint a pamphlet and put our name on it. We don’t have to replicate what’s out there.”

And he continues: “A lot of people rush to poverty and racism right away, but I’m not sure we want to rush there. That may add another layer to it, but asthma in particular, it’s amazing—it affects everyone. It might affect certain groups a little bit more, but we shouldn’t lose track that it’s across the board.”

The lack of asthma programs around the six-county region belies federal guidelines and the state’s goals. Both emphasize the need for local health departments to launch aggressive education programs, especially among health care providers, teachers, parents and students, so that asthmatics become comfortable with their disease and their medications.

Health departments should also conduct or promote screenings and work with other organizations to make sure people get asthma care, according to the CDC.

None of the seven public health departments in the metro area—the six counties plus Chicago—meets all these guidelines.

“We really don’t do too much on direct service or education for asthma,” says Fred Carlson, Kane County’s director of environmental health.

Advocates are upset that almost no community education programs have materialized yet. “The state and local public health departments are ideally suited to be able to address that, or insurance companies, if they’d pay for asthma education,” says Cook of the Chicago Asthma Consortium.

Still, on some fronts, the departments are more successful. Advocates praise the personal dedication of many department staff who volunteer their own time to help with education.

And all the area health departments are members of collaborative groups that offer education, advocacy and screenings, such as the Chicago Asthma Consortium and the Suburban Asthma Consortium.

Representatives from 20 area organizations announced a city “asthma plan” this spring. Among their goals: consolidating data collection, forming an asthma program, addressing racial disparities and offering community education.

At the same time, people such as Ralph Roller are helping to fill the gaps. Roller has had asthma his whole life, but the disease really hit him on a northwest suburban softball field in 2002, when he was coaching his then-8-year-old daughter’s team.

During warm-ups, her best friend had a severe asthma attack. She died at the hospital.

Roller, a father of three, vowed to do something to help asthmatics. He then formed a nonprofit called the National Asthma Foundation, whose purpose is to connect uninsured or low-income families with doctors and asthma medicine.

People are referred to the foundation by emergency-room staff or word of mouth. Roller and other volunteers then try to link them with the state’s KidCare health insurance program or pharmaceutical companies providing discounted or free medication. Sometimes the foundation pays for prescriptions and equipment itself.

The foundation is now an all-volunteer group with a $15,000 annual budget. The Suburban Asthma Consortium, Advocate Health Care and physicians help out, Roller says, but money is always tight.

“It’s been a struggle, honestly,” says Roller, who works full time in the children’s ministry at a South Barrington church. But he’s not quitting. He talks about one fourth-grade girl who was hospitalized after an asthma attack. She lived with her grandmother and had a single asthma inhaler, which she kept at school.

“This whole thing could have been avoided for $25 at Walgreens,” Roller says.

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