LEWISTON, Maine — Brystal Pinkham is 7 years old.
A cheerleader and beauty pageant winner, she loves country music and treasures annual family vacations to Nashville.
Named by her father in honor of Bristol Motor Speedway, Brystal is a serious Tony Stewart fan.
And, she has severe asthma.
Brystal doesn’t know exactly what asthma is, but she knows, “I can’t breathe.”
This personable little girl has been hospitalized at least a dozen times to treat her lung disease, the first time when she was five months old.
She was so sick in infancy, wheezing and gasping for air, that her family thought she might die several times during one particular month-long stay at Central Maine Medical Center.
Instead, with careful attention to treatment, she has thrived.
And, according to her mother, Loretta Pinkham, “She keeps busy no matter how miserable she feels.”
Last year, when Brystal was hospitalized, Loretta remembers her daughter saying, “I’m sorry I’m sick, Momma.”
It breaks her heart, Loretta said, seeing her daughter “struggling and there’s nothing I can do to make this better … until the meds kick in.”
“She could grow out of it,” Loretta said. “There’s a chance she could get worse. We don’t know at this point.”
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Brystal, who lives with her parents and older sister Brianna Jordan in Poland, is one of an estimated 25,877 Maine children living with asthma, and is among the most seriously ill who account for an estimated 2,562 emergency-room visits and 414 hospital stays each year.
In recent years, the number of people here afflicted with asthma has increased.
Last year, the number of adults in Maine living with asthma was 106,273, with the highest rates of disease in Cumberland, York, Penobscot, Kennebec and Androscoggin counties.
In 2000, the asthma rate in Maine was 7.3 percent of the population. By 2005, that figure had grown to 8 percent, according to the Maine Department of Health and Human Services. The asthma rate in Maine now stands at 10.8 percent, which is the third-highest rate in the country and more than two points higher than the U.S. average. Oregon has the highest rate, followed by Arizona.
In Maine, the rate among women is 13.4 percent; the rate for men is 8 percent. And, according to DHHS, children have higher prevalence rates and higher rates of emergency department visits and hospitalizations than adults.
Every year, according to DHHS, half of all asthma patients suffer an asthma attack, which happens when bronchial muscles tighten suddenly in response to an irritant, such as pollen, smoke, pollution, temperature or exercise. When that happens, bronchial airways swell, which limits airflow and induces wheezing, rapid breathing and coughing. Left untreated, a severe attack can result in death as a person’s oxygen supply is strapped.
Dr. Andrew Carey of the Adult and Pediatric Asthma and Allergy Treatment Center in Lewiston is Brystal’s pulmonologist. He has been in practice for 19 years and says he’s seeing more asthma cases now than ever before.
Dr. Neil Duval, managing physician at Central Maine Pulmonary and Sleep Medicine in Lewiston, is also seeing an increase in the number of adult asthma patients.
In practice for the past two decades, Duval said, “The numbers have been climbing back as far as I can recall.” There are a number of reasons for it, he said.
One is that doctors are increasingly recognizing symptoms and diagnosing the disease but, he said, “Even if you account for that, there is a definite rise in the incidence of asthma, as well as the prevalence.”
In April, a coalition of Health Care Without Harm, the Alliance of Nurses for Healthy Environments and the National Association of School Nurses issued a report about what researchers called “the staggering human and financial toll of asthma in Maine,” and the likelihood that the toll would increase if Congress does not act to update the Clean Air Act.
The report, “The Economic Affliction of Asthma and Risks of Blocking Air Pollution Safeguards,” outlines the cost of asthma across the country, estimating that the “direct costs of treating Maine’s worsening asthma epidemic” already exceed $265 million for medical treatment. Millions more are spent in indirect costs, such as lost productivity at work, missed school days and premature death.
For the Pinkham family, Brystal’s illness dictates family life. The constant monitoring and care prompted Loretta to quit her job and start taking in baby-sitting jobs at home. It’s the only way Loretta can always be available to care for her daughter, including picking her up at school and taking her to the hospital, as needed.
Brystal’s father, Jerry Pinkham, works full time, but the family relies on MaineCare to pay for Brystal’s care, Loretta said, including hospitalizations and the $600 to $700 monthly cost of prescription drugs.
“We would be lost if the government gets rid of MaineCare,” Loretta said, because the medical bills would overwhelm the family’s income.
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Asthma is a complex and chronic disease, according to Dr. Charles Irvin, director of the Vermont Lung Center and professor of medicine at the American Lung Association’s Asthma Control Research Center at the University of Vermont in Burlington, and is not caused by one thing.
The only scientifically proven cause of asthma is environmental tobacco smoke, Irvin said, but there are dozens of other factors believed to cause asthma, including obesity and air pollution.
“Our air quality in Maine tends to be relatively poor,” Duval said, because of the jet stream that carries pollutants from the Midwest and “tends to deposit them in Maine.”
Maine also has a high smoking rate, a significant factor in triggering asthma, Duval said. And, as the cost of heating oil has climbed, homeowners have tightened up their homes, trapping pollen, mites and other allergens inside.
“Finding the cause is secondary to treating it, right now,” Irvin said, because the rising disease rates demand attention to treatment.
Fortunately, Duval said, researchers are developing new asthma medications and treatments all the time, “so control of asthma is within our grasp now.”
It cannot be cured, he said, but it can be controlled through lifestyle habits and prescriptions and, now, through a new procedure called bronchial thermoplasty.
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Treatment can often be an experiment in matching lifestyle changes and prescription drugs to control varying symptoms in different people.
The American Lung Association of Maine, in partnership with the state’s community college system, has established the Asthma Educator Institute to ensure that every student who graduates from a respiratory therapy program has specialized education in asthma to better serve asthma patients.
The institute, according to Lee Gilman, senior director of Health, Promotion and Public Policy for the ALA, teaches asthma management, including development and implementation of asthma-management plans for patients.
The institute has been so successful that its been replicated in other states. Gilman said she will travel to New Hampshire next week to help launch a program there.
“Our goal,” she said, “is to have a network of health care professionals who have good, solid information around asthma and help people with asthma learn to manage their disease.”
Because, she said, “with really good management, asthma should not impact your life in a negative way.”
Rhonda Vosmus, a respiratory therapist and nationally certified asthma educator at Maine Medical Center, recommends written asthma self-management plans for all asthma patients, children and adults.
Asthma can be well-managed for months, Vosmus said, and then flair unexpectedly. When that happens, if a patient has a documented plan, they can refer to that to avoid confusion in what can be a panicked situation.
In a state where doctors prescribe 32 types of inhalers, among a host of other asthma medications, and where dozens of languages are spoken, written management plans help focus individualized treatment and personal health management for patients, doctors, schools and family members.
Brystal Pinkham has a strict asthma action plan, developed by school staff in coordination with her family, her doctor and CMMC asthma educator Pam Smith.
As part of that plan, Brystal has just finished an eight-week round of prednisone, prescribed to stave off a springtime hospital stay. In addition to the prednisone, Brystal takes Singulair and Loratadine and uses three inhalers every day, frequently checking her respiration with a peak-flow meter to make sure the prescriptions are controlling her asthma.
She has special asthma-friendly toys, and is now old enough to recognize allergens that may cause an attack. That includes milk, eggs, peanuts, wheat products and soy. It also includes tree pollen, certain grasses and animals, so her outside play time is limited and the family does not have pets.
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The American Lung Association is among a group of health care advocates working to bring awareness to the problem of rising asthma rates, and working on policy initiatives to reduce pollution and other irritants. Advocates’ focus right now is pushing amendments to the nation’s Clean Air Act.
According to Ed Miller, executive director of the American Lung Association of Maine, the Obama “administration is really dragging their feet in terms of coming up with a new ozone standard that actually meets the test of the law.”
The current standard, which is several decades old, allows ozone to climb to 85 parts per billion before a health warning is issued to the public. Most recent studies show that warnings should be issued when ozone reaches 60 to 70 ppb.
“We have a lot of days in Maine between 65 and 80,” Miller said, when people are not warned to reduce exercise, limit outdoor exposure and curtail driving to limit pollutants.
The warnings are essential to those suffering from chronic diseases, such as cardiovascular and lung diseases, Miller said, but are just as important to others who may be exposed to long-term damage that may cause disease, especially among young people.
The government’s delay in addressing Clean Air Act standards has “some really major consequences, the most important of which is that it gives the public a false sense of confidence in how healthy our air is,” Miller said.
Peter Iwanowicz, assistant vice president of the American Lung Association and director of the ALA’s Washington, D.C.-based Healthy Air Campaign, agrees.
Iwanowicz said the ALA is also pushing the U.S. Environmental Protection Agency to strengthen emissions standards for power plants.
“The Northeast has that pollution emanating from the Midwest, the rest of the states and New York all pumping their way,” he said.
“Maine is really depending on the federal government reining in emission standards,” including setting tighter, more protective standards for ozone pollution, Iwanowicz said.
Next week, the Healthy Air Campaign will hold a series of meetings in Augusta to kick off a coalition of public health officials who want to bring attention to this problem and to what can be done to reduce pollution.
“There are tremendous health risks associated with bad air,” Iwanowicz said. By drafting stricter standards, “we’ll have fewer instances of asthma attacks, fewer emergency room visits and fewer hospital visits.”
“When you’re managing that disease in an environment that is a day-in and day-out insult, we should do everything we can to remove that from our environment,” he said.
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