Asthmatics are living half lives, shunning exercise, medications and coughing their way through the night. It doesn’t have to be this way.
Adrienne Smith has been battling with her asthma since she was diagnosed at the age of 13. For Smith, high school gym class was particulary difficult: she would often get a crushing feeling in her chest when she started to run, and it would take her 25 minutes to recover. “It was humiliating,” she says.
Now, at 30, Smith’s asthma  is still a big part of her life. She doesn’t play competitive sports any more, something she used to enjoy. And when she works out, she tends to walk, rather than run. When her asthma is at its worst, it keeps her up at night. During these bouts, she finds ordinary household chores arduous, such as carrying laundry up the stairs.
Still, Smith, who lives in Victoria, B.C., feels she’s doing fairly well. “I haven’t been to the hospital this year,” she says. “So that’s a good sign.” While she finds her limitations frustrating, she accepts them as a part of who she is. “I don’t think I’m sickly. It’s just that sometimes I have these episodes.”
About three million Canadians have asthma – one of the highest incidences in the world – and the majority of those affected share Smith’s conception of the disease.
“They think it’s normal to be short of breath, waking up at night, or not being able to perform exercise,” says Dr. Louis-Philippe Boulet, a respirologist and asthma researcher at Laval University in Quebec City. “I saw a patient recently who had stopped exercising; he started playing chess. He almost couldn’t do anything. But it was normal for him.
“Research shows 28 per cent of Canadians with asthma have symptoms of their disease every day, while 67 per cent have symptoms every week. But the experts agree that this should not be the case; that asthma is completely controllable. In the right environment and with the right medications, even those with severe asthma should have relatively few symptoms.
That’s because the medications available today can prevent the inflammation of the lungs, and the resulting constriction of the bronchial tubes and mucus build-up.
It’s possible to develop an asthma action plan in which, by reducing bronchial inflammation with medication and avoiding asthma triggers, the patient should rarely have to stop to catch a breath. And that blue “rescue” inhaler that many asthmatics depend on to treat frequent symptoms? It should only be used occasionally.
However, this ideal is far from reality. Instead, the majority of Canadian asthmatics are living half-lives. They aren’t exercising, which can lead to a host of other health problems, like obesity, diabetes and heart disease. They are missing school and work, and giving up activities they enjoy.
They see their doctors, but these visits are often marked by poor communication. They end up in the hospital after days of worsening symptoms. They are Canada’s “walking wounded,” and they’re slipping through the cracks of our health-care system. Amazingly, most of them don’t even realize they have a problem.
The statistics show just how bad it is. Six years ago, the Asthma Society of Canada announced that 57 per cent of Canadians with asthma did not have their disease under control. The society’s latest research, released in September 2006, shows no sign of improvement; more than half of asthmatics are still living with symptoms above what are considered acceptable levels.
Earlier findings showed 10 per cent of them had landed in the emergency room at least once in the previous year because of an asthma attack, and 12 per cent reported missing school or work.
In Ontario alone, hospital statistics show that asthmatics made more than 73,000 emergency room visits in the past year. National statistics are not available, but the numbers are known to be uniformly high.
“Certainly for children, we know that it is one of the most common reasons for emergency visits,” says Jan Haffner, vice-president of health initiatives for the Lung Association of Saskatchewan.
Next page: How asthma medication works
There is also rampant “presenteeism” in the workplace, says Dr. Kenneth Chapman, the director of the Asthma and Airway Centre of the University Health Network in Toronto. This refers to asthmatics who show up to work but aren’t functioning at full capacity because they’re experiencing symptoms, or they were up all night wheezing and coughing.
Asthma “control” is defined by how often a person has symptoms. The Canadian Asthma Consensus Guidelines say that if a patient coughs, wheezes or has tightness in his chest three or more times a week, the asthma is out of control. If asthma keeps the person up at night once or more a week, that is unacceptable.
If asthma has made the person stop exercising once in the last three months, or he uses a reliever puffer more than three times per week, again, the asthma is out of control.
Poor asthma management begins where most asthma patients seek treatment: the family doctor’s office. Often, a physician will diagnose a patient after he or she complains of wheezing or shortness of breath. In many instances, spirometry, a lung-function test, is not done, and medication needs are estimated.
“They will say, ‘this is asthma’ based on the fact we’re wheezing and we have a cough, and here’s a treatment,” says Dr. Alan Kaplan, a doctor in Richmond Hill, Ont. who chairs the Family Physician Airways Group of Canada. “They just try therapy, rather than doing a definitive test.”
Also, the doctor isn’t always able to explain fully to the patient how the medications work, and what kind of results to expect. “Physicians obviously give good information to the patient, but are limited by the time and resources they have,” says Haffner of the Lung Association.
Because the patient doesn’t really know any better, the next time the doctor sees him and asks how his asthma is, he’ll invariably answer that ‘it’s fine.’
Studies show, and experts agree, that there is a great deal of patient confusion about asthma medication, primarily how it works and whether it’s safe. There are two types of medication to treat asthma: controller and reliever .
Controller medications, usually inhaled corticosteroids, are meant to be taken every day to prevent inflammation in the lungs. Reliever medications shouldn’t be needed on a regular basis, but will open the lungs in the event of an asthma flare-up.
All too often, patients don’t take their controller medication, the corticosteroid, at all. “They’re afraid of the steroid word,” says Kaplan. But corticosteroids aren’t like the muscle-building steroids that are known to harm your body.
And Boulet says any legitimate long-term side effects, such as loss of bone density, should not occur at the doses usually prescribed. (Canadian guidelines stress that doctors should prescribe the lowest dose necessary to control the condition.)
“Corticosteroids are extremely safe,” he says. Yet, according to the Asthma Society, more than a third of those prescribed an inhaled corticosteroid don’t have any intention of even filling the prescription. Another 20 per cent fill it, but don’t take the medicine.
Next page: Why you should take daily asthma medication
Many patients are like Adrienne Smith – they won’t use their controller inhalers regularly because they don’t like the idea of taking drugs every day. “I wait until it’s too late before I start taking the [controller], and I rely more on my [reliever],” she admits. To her, doing otherwise doesn’t make sense: “It would be like taking an aspirin every day if you didn’t have a headache.”
These patients aren’t fully aware of how the medication works. To be effective, the controller puffer must be used every day; otherwise, the inflammation returns. Because the controller reduces inflammation, rather than simply dilating bronchial tubes like the reliever, it takes a few days of use before there’s an improvement in symptoms.
Kaplan notes that, “if you don’t understand what you’re taking, you’ll say, ‘why do I want to take that orange [controller] inhaler when the blue one is the one that makes me feel better?’”
Efforts have been made to improve patient education. For instance, Canada has a program to educate and certify asthma educators, health professionals who can help patients manage their chronic illness. There are 630 certified asthma educators in Canada, but the system is far short of perfect, and many asthmatics never meet a CAE.
Funding often isn’t available for them so, although most will do asthma education as part of another job (nursing, for example), many are not employed as “asthma educators.” Even where there are full-time CAEs, they are often not accessible to patients, either because they work in a hospital (if you don’t land in emergency, you won’t see one) or because they work in the clinic of an allergist or respirologist, and you need to be referred there.
Asthma educators work with patients to teach them how to use their medication properly, and to explain that asthma shouldn’t be limiting. They often assist patients with implementing the asthma action plan – a document drawn up by the physician that helps the patient to cope with the condition between doctor visits.
For instance, if you get a cold, and your asthma flares up, the plan tells you how to increase the dose of your medication to prevent a severe attack. All asthma patients are supposed to have an action plan. Yet, only between 3 and 15 per cent do. “Education is not always considered an integral part of health care,” notes Haffner.
There is, however, a movement to get asthma education out of the hospitals and into the community. The problem? “There aren’t the resources to pick up the salaries of the asthma educators in the community,” says Cheryl Connors, executive director of the Canadian Network for Asthma Care, which certifies CAEs.
Certainly in some centres, the formula is working better than others. In Calgary, asthma educators are financed by the Calgary Health Region, and they travel to doctors’ offices and pharmacies to work with patients. “I don’t think there’s another place in Canada where such a broad coverage of respiratory educators is available,” says Dr. Robert Cowie, vice-president of CNAC.
In Ontario, changes are underway that will see health-care delivered in more of a team approach, where physicians can hire other health professionals, such as asthma educators, nurse practitioners, diabetes educators, and dietitians, to work with them.
In British Columbia, Jo-Anna Gillespie, a nurse, and her husband, Dr. Michael Mandel, see asthma patients in their Vancouver clinic. The pair also take education to rural communities in the northern part of the province. Gillespie, who has been an asthma educator since 1993, thinks the whole system needs to change.
“It’s totally not patient-centred, it’s doctor-centred,” she says. In her view, asthma management should be done in a clean, comfortable clinic that emphasizes wellness rather than sickness. “I think it should be simple, non-referred, but encouraged and supported by physicians.”
Next page: The road to a national asthma plan
Gillespie and her husband had hoped to expand their Vancouver clinic into a full-fledged allergies and asthma teaching unit – where asthma patients would be taught to monitor their lung function and shown how to manage their disease. “We figured we could look after the province with just five asthma educators,” she says. But they could not get the funding they needed.
At the very least, asthma is on the federal government’s radar. Ottawa is involved in major discussions, led by the Lung Association and including patient groups, the medical community and the pharmaceutical industry, which will be held over the next two to three years.
The intent is to develop a national plan – the Lung Health Framework – that will “stem this impending crisis” in respiratory health in Canada. (The framework will include lung cancer and emphysema as well as asthma).
In the shorter term, there are other projects in the works. Dr. Judah Denburg, the CEO and scientific director of the research network AllerGen, says his organization is working with the government and others on a pilot project that would “make it imperative” that every patient in Canada who is diagnosed with asthma undergoes a lung function test.
When it comes to efforts to improve education and treatment, Chapman of the University Health Network criticizes the slowness to act. “I don’t think there’s been a good application of some of the things we’ve known for years about treating asthma,” he says.
“Somehow, heart disease and cancer always get a lot of attention. And appropriately so. But there certainly is some progress that we can make with asthma that we’ve failed to make.”
Poor asthma control isn’t just bad for the patient: in Canada, more than eight million work days are lost each year due to asthma-triggered absenteeism. Respiratory disease as a whole costs the Canadian economy an estimated $15 billion a year. Worldwide, the economic costs associated with asthma are thought to be greater than tuberculosis and HIV/AIDS combined.
Experts hope that as education efforts improve, asthma patients will finally get the message, and spend less time in the emergency room and more time enjoying physical activity and staying healthy.
And there’s even greater incentive to accelerate education and treatment: although the number of deaths caused by asthma has gone down in recent years, more than 200 people still die of it every year in Canada. Almost all of those deaths could have been prevented because, as Boulet puts it, “asthma should really just be a minor nuisance.”
Yet, we all know that person who claims to have “bad asthma,” whether it’s the girl who is always huffing and puffing on your sports team or your friend who refuses to go to the gym because “I can’t.” These people all have one thing in common: they’re being fooled by their condition.
First published in Allergic Living magazine.
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