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Sep. 27--As the rate of people dying of asthma continues to decline in most states, the mortality rate in Illinois is going up, according to federal statistics.
And the reasons behind this mysterious spike in asthma deaths remain as puzzling as the disease itself.
Some view the mortality increase as an indictment of public health care. Others see it as a deadly byproduct of poverty and pollution. Still others blame it on a lack of public awareness about a disease that sends thousands to emergency rooms each year.
Scientists may not know why Illinois' mortality rate is rising while rates in California and New York have plummeted. But they do know it shouldn't.
"This is just good old-fashioned bad," said Dr. Kevin Weiss, a professor of medicine at both the Hines VA Hospital and Northwestern University's Feinberg School of Medicine, who has authored or contributed to more than 100 scholarly articles on asthma. "We should not be seeing this happening, and this speaks to a major problem for an illness that should not be killing."
The state's asthma death rate increased between 1998 and 2001, to where Illinois' mortality is twice the rate of New York and more than three times higher than California.
Mortality rates in Cook County also have soared, increasing 60 percent from 1979 to 2002. Mary Lemmons McGee nearly became one of those statistics when her first severe asthma attack sent her gasping to a hospital emergency room.
"The people at the hospital didn't take it seriously," she said. "They said I was just too emotional. It was all in my head."
That was when she was 25. McGee, now 61, has known asthma's dark side: Her grandmother, a sister and a brother died of asthma, and two of her daughters have the disease.
She has also seen the bright side: Consistent medical care and modern drugs are keeping her asthma and that of her daughters fairly well controlled.
But in Illinois, asthma's damage is far too prevalent. The rise may be attributed to the fact that Illinois--particularly Chicago--is not spending enough on asthma prevention and education, Weiss said. Dr. Sandra Thomasof the Chicago Department of Public Health concedes her office has no budget allocated to asthma.
As recently as the mid-1990s, asthma in Chicago had not even registered a blip on the city's medical Richter scale. Chicago Public Schools records, for example, indicated there was no asthma epidemic in the city. Only 3 percent of students had asthma, according to school records.
That figure was woefully wrong, and Dr. Raoul Wolf, a University of Chicago asthma expert, knew it. So when he launched a multiyear study of more than 13,000 students in 15 schools, he came up with figures that revealed an asthma epidemic in progress.
Thirty-four percent of African-American students have either diagnosed or undiagnosed asthma, Wolf found, as do 25 percent of Hispanics and 20 percent of whites.
The disease has long been ignored by the medical community, teachers, parents and the children themselves because it is not a big killer.
"It's not just not recognized among physicians, it's not recognized by parents," Wolf said. "You'd be amazed how many people think it's normal for a child to wake up between the hours of 1 and 3 a.m., four times a week, coughing so loudly that he wakes up the whole household."
About 5,000 people die each year in the U.S. from asthma, a toll that respiratory experts say could almost completely be prevented with proper care. But millions annually have the debilitating symptoms; the worst is the fear of suffocation from constricted airways.
To experience something of what an asthma attack is like, try breathing through a straw for five minutes.
"It's just amazing how much people's lives are actually affected by this," Wolf said. "Kids are being hospitalized, they're missing school, they can't participate in sports. They're up all night coughing, so their school work falls apart." As other researchers explore the asthma problem in Chicago and surrounding communities, they are discovering that the disease is widely mishandled. The major trouble spots:
--About half of all the people with asthma are not being adequately treated.
--Many children rushed to hospital emergency rooms because of acute asthma attacks are sent home without any drugs to keep the disease at bay.
--Chicago's asthma death rate, one of the nation's highest, is an indictment of the inadequacy of care. Approximately 120 Chicagoans die annually from asthma, about 80 percent of them African-Americans.
--In communities where fear of crime and violence stalk the neighborhoods, asthma rates are 40 percent higher than in areas that are safer but have the same poverty levels.
In Chicago the asthma problem has been compounded over the last 30 years by the systematic dismantling of the health-care system for the poor, said Dr. Alan Leff, professor of medicine and director of the University of Chicago's asthma clinic, who managed to save McGee's life.
"It doesn't take a great doctor to keep an asthma patient alive," he said. "But it does take a doctor. A lot of these people don't have doctors."
McGee remembers what it was like to be without a doctor and to have her asthma out of control.
"Every week, it seemed, I was in the emergency room," she said. "Sometimes every night. They'd treat me and send me home. Then it got to the point I wasn't able to hold down a job."
The full extent of the asthma problem in Chicago is unknown, but preliminary surveys by Northwestern's Weiss indicate it is far worse than previously suspected.
His random sample of Chicago and six surrounding counties suggests that the disease has not been diagnosed in between 10 and 40 percent of the people who have it. And, 40 percent of those who know they have asthma and are having breathing problems are not being treated to control the disease.
One out of four Chicagoans treated in emergency rooms for asthma attacks ends up back in the emergency room within three weeks, Weiss found. That's intolerable, he said.
"There are pretty severe problems in Illinois that make it different from other states," Weiss said. "The care is sub-optimal."
It also leads to revolving door hospital visits for primarily poor asthma patients, said Dr. John J. Shannon, director of the asthma clinic at Stroger Hospital of Cook County. Stroger, the last resort for desperate asthma patients who fall through the medical safety net, hospitalizes about 11,000 asthmatic patients a year and treats another 70,000 in its emergency room.
On a midmorning in late July, the second floor of Stroger Hospital's Fantus Clinic, which houses the adult asthma clinic, is jammed with patients, their wheezing a chorus of distress.
Sherri Thompson, 34, is among them. Thompson was told she had asthma as a child but had little trouble until she was 26, a few years after she started smoking cigarettes.
It hit with a vengeance: "It's like your chest is locked up. Nothing can get through. You can't breathe."
Despite taking a variety of asthma medications, Thompson wakes up in the middle of the night with shortness of breath. She uses her inhaler nearly a dozen times a day.
After examining her, Shannon writes out an asthma action plan to help her cope with the disease and gives her prescriptions that can be filled at the pharmacy on the first floor.
Shannon said too many hospitals in Chicago will treat patients for an acute attack but release them without any medicine to control their disease.
"If they always got medicine when they left and they were able to get their refills, you would see far less of this acute stuff and the numbers for emergency room visits and hospitalizations would go way down," Shannon said.
Untreated and undertreated asthma remains a major problem in Chicago, said Dr. Jacqueline Pongracic, chief of Children's Memorial Hospital's asthma and allergy division. Asthma has been the No. 1 cause of hospitalization at Children's for at least the last 13 years.
Most of these children wouldn't have to be hospitalized for out-of-control asthma if they were given drugs to control the disease, she said.
"There still seems to be an underutilization of these controller medications," Pongracic said. "Certainly, they're still not prescribed often enough by physicians."
Often doctors fail to recognize a child has asthma, and at other times they may be reluctant to prescribe drugs because of outmoded fears of side effects, such as the risk of stunting the growth of a child.
"That's unfortunate, because there have been studies that have come out in the past three or so years that have provided very reassuring evidence that children are not at risk for permanent growth suppression," Pongracic said.
The closer researchers look, the worse the asthma problem becomes. A new intensive study of six Chicago communities representing African Americans, Puerto Ricans, Mexicans and whites--the largest door-to-door health study ever conducted in the city, involving 1,700 scientifically selected households--found that asthma had been diagnosed in 21.5 percent of the children or they had been found to have it after being screened.
"We're used to thinking that the prevalence of pediatric asthma is 10 or 12 percent," said epidemiologist Steven Whitman, director of Mt. Sinai Hospital's Urban Health Institute. "This was more than twice that much. If one of the communities had come up like that, I wouldn't have been that shocked. But in fact four of the six communities came up like that."
A pilot intervention program instituted at Mt. Sinai has had remarkable success at reversing the problem of uncontrolled asthma.
Using trained health educators from the community to recognize asthmatics, get them into adequate care and show them how to use medications effectively, the program reduced hospitalizations by 81 percent, emergency room visits by 64 percent and clinic visits by 58 percent. The program reduces the annual medical cost of treating patients by more than $4,000 each.
Concerned about the ominous spread of asthma and the scientific puzzle it presents, the National Institute of Allergy and Infectious Diseases has launched the $55.8 million Inner-City Asthma Consortium project to search for the causes of the disease and ways to prevent it.
The 10-center study, run by the University of Wisconsin Medical School's Asthma Allergy Clinical Research Center, is just getting started, and it may take years before it finds answers. But it is ambitious.
"There's pollution in the inner city. There's crowding. There's stress. There are high levels of allergens in inner-city homes," said Wisconsin's Dr. James Gern.
"All of these things could potentially be increasing the risk of asthma. The bottom line is that no one has ever looked in the early years of life at all of these things together in one study to find out what are the most important things."
Children's Memorial Hospital, one of the 10 medical centers, will also test new treatments in children at risk for the disease. Therapies are being designed to keep lung inflammation from flaring into asthma.
"These are really labor intensive studies," Gern said. "We hope that we'll be able to find and pinpoint some of the really important environmental causes so that we'll be able to take a stab at asthma prevention in the near future."
By Ronald Kotulak, Peter Gorner and Robert Becker, Tribune staff reporters
ILLINOIS' ASTHMA PROBLEM GETS WORSE
Asthma-related deaths among people ages 5-34 have increased in Illinois in recent years despite a decrease in most other states. Overall asthma-related deaths are up nearly 60 percent in Cook County since the 1980s.
Note: The criteria for determining cause of death was modified in 1999, resulting in about an 11 percent decrease in the number of deaths attributed to asthma from that point on.
Sources: Centers for Disease Control and Prevention, Illinois Department of Central Management Services.
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