You know it’s haze season when your nose takes a whiff of that acrid, burnt smell in the air. Our lungs inhale the polluted air full of burnt particles and it’s all about sniffling noses, itchy eyes, and worse, the discomfort of breathing. Some parents, in the 2015 haze which saw our cities shrouded in a surreal grey veil made a few emergency trips to the hospital to save the lives of their children who had asthma attacks.
Asthma affects 300 million worldwide with 250,000 million deaths annually. Yet, asthma is one of the most misunderstood respiratory ailments. An estimated two million Malaysians suffer from it. However, only 6% of the sufferers have managed to control their asthma which leaves the 94% or 1.9 million with uncontrolled or partially uncontrolled asthma.
The number of casualties is partly due to the lack of awareness. Knowing this, consultant respiratory physicians Dr. Sundari Ampikaipakan and Dr. Helmy Haja Mydin launched Asthma Malaysia in May this year. It is a non-profit organisation aimed at educating and empowering Malaysians to make better choices about managing asthma conditions. May 2nd was also World Asthma Day.
Why so serious? It’s only some wheezing now and then
One of the main problems Dr. Sundari and Dr. Helmy find is that patients tend to not think of asthma as a chronic disease. “When I’m saying it ‘comes and goes’ – the symptoms sometimes flare up, sometimes it’s stable. So people think they only need to take treatment when it flares,” Dr. Sundari said. Some only take it two or three times a month only when they have symptoms like wheezing.
“The thing patients don’t understand is, with good asthma control, you shouldn’t have to take your reliever if you’re on proper preventive treatment. If you take your inhalers regularly, you won’t get symptoms. If you take them morning and evening, you’ll be able to lead a normal life. That’s good asthma control.”
Having had their training in the UK before returning to Malaysia under TalentCorp’s Returning Expert Programme, they aimed to ensure that Malaysia’s asthma care is equal to the best in the world. They were both already familiar with Asthma UK’s patient advocacy work and saw the need in Malaysia.
“Our interest in asthma is a combination of things – we are quite interested in patient engagement and advocacy, and one thing is that people have lots of misconceptions about asthma, especially in regards to the long-term management of it.
As Malaysia has a high penetration of internet usage, especially on social media, they launched the Asthma Malaysia website along with a Facebook page.
Dr. Helmy said, “The idea behind the social media drive is to basically give a lot more information, produce a lot more local and trustworthy information that people can rely on.” He said there is too much “nonsense” information on Google that claims to cure asthma.
Asthma is not curable, but it is treatable. In order to treat it well, patients must first understand what it is. Hence, Asthma Malaysia’s first campaign is called “Friend or Foe” which raises awareness about asthma triggers.
One size doesn’t fit all
“Asian society is such that when you talk to the Chinese, Indian or Malays, they all have these different ‘pantangs’ – Chinese patients would say – don’t eat chicken or mandarin oranges when you’re coughing or the Malays would say ‘jangan minum air sejuk, nanti dapat lelah’ – but the fact is, everybody’s trigger is different,” Dr. Sundari said.
“Certain asthmatics are allergic to cats, or flowers, or pollen where you get hay fever. But I’ve got asthmatic patients who have three or four cats as their pets and they’re fine. And then I’ve got asthmatics who can’t get within 50 metres of a cat before they start wheezing,” she said.
“It’s about knowing what your triggers are, avoiding them and also being aware of what could make things potentially worse, like the haze, for example,” Dr. Helmy added.
At the end of the day, asthma is about people having inflamed airways that will be more sensitive to various triggers. On one hand, good control via medication helps but on the other hand, patients should exercise common sense like avoiding going out on particularly hazy days and taking extra precautions like wearing N95 masks.
Another trigger that baffles Dr. Helmy is “Malaysians like to blast their air-conditioning. We don’t use the air-con to keep things comfortable. We use the air-con to make things cold!” he said incredulously. “And then you wear thick layers of blanket”. Both he and Dr. Sundari have asthma patients who are triggered by the air-conditioned environment due to either changes in temperatures or dirty air filters.
What is asthma, really?
Asthma is a chronic lung condition where there is inflammation of the airways. The inflammation is what causes the airways to narrow, induces mucus production and symptoms of coughing, wheezing and shortness of breath. It is reversible, but not curable and thus proper management of the disease helps.
“What we’re trying to say to patients is, if you’re going to just take a reliever medication, that’s just going to open up the airways. It doesn’t target the underlying inflammation, so the inflammation is always there,” Dr. Sundari said.
“Most of the time, patients will go ‘Oh, I feel okay already, so I’m going to stop taking my inhalers,’” said Dr. Helmy. “But what they fail to understand sometimes is it’s the inhalers that are preventing them from getting more attacks, giving them quality of life.
“What asthma sufferers usually do is to only take relievers like nebulisers, the Ventolins which do not control their asthma in the long term.”
When asthma occurs
“Asthma was believed to be a childhood disease. However, the truth is, asthma can occur at any time in a person’s life. If a person had had asthma as a child, it could recur in their adult life,” Dr. Sundari said. Or, it could persist through childhood to adult life.
People can also develop late onset asthma. This occurs in adults as a result of triggers such as the haze. “In Malaysia and Singapore, there were people presenting with respiratory symptoms and there were those who were diagnosed with asthma for the first time,” she said. “In China and India where biomass fuel is heavily used, there has been an occurrence of late onset asthma, too.”
What about genetic tendencies? “If your parents are asthmatic, then you will have asthma, but then again, you may not. Equally, you can have asthma, but there’s no family history of asthma. So we feel there’s a combination of environmental factors as well. Nobody really knows what causes asthma,” Dr. Sundari said.
The lung can filter out foreign particles up to 10 microns in size. Anything smaller than that does cause inflammation and irritation in the airways. Dr. Sundari advises patients to monitor the air pollution index (API) readings which can be found on online sites before going out of the house whenever they know the haze is back. All patients with lung diseases, be it asthma, COPD or other respiratory conditions should check the index and also not go out unnecessarily.
For patients using air purifiers, ionisers and humidifiers, she said “There’s no randomised controlled trial to tell us if an ioniser is better than a humidifier or if a particular ioniser works well. For ionisers, patients have anecdotally said it has helped them. I think it’s because it clears the environment of the fine particulate matters that can affect them,” she said cautiously.
Interestingly, the theme for World Asthma Day 2017 happens to be “Better Air, Better Breathing” which touches on the importance of reducing air pollution.
Awareness of the lung’s long term reactivity
Once you have asthma, you’ll always have it. But it does vary during the course of your life. Dr. Sundari explained how patients may not notice the lingering susceptibility and unpredictability of their lungs’ reactivity after the initial inflammation. “You may start off being mildly asthmatic and then it may flare up later. For women, it may flare up at puberty or with hormonal changes or when you’re pregnant. For boys, sometimes they have asthma till 15-16 and then that’s it. It seems to disappear. And I’ve patients in their 30s who say ‘yes, I was asthmatic as a child, but I really don’t have any more symptoms. But every time I get a cold, my cough takes a long time to recover.’ So that tells you that your airways have always got a degree of reactivity. And that’s what asthma is.”
Of inhalers and patient power
Besides educating patients, both doctors said they would like to empower patients to ask questions. “For example, I read that this inhaler is better, so, shouldn’t I be on that inhaler?”
“I want to educate patients to say that using long term preventive inhalers is not going to make you addicted. And it’s not going to make you fat or have muscles just because it does have steroids in it,” said Dr. Sundari. “Some people are concerned about their immunity weakening due to the steroid content of inhalers but inhaled steroids are different to steroid tablets. Steroid tablets have more of an effect on the body as they are absorbed into the bloodstream unlike inhaled steroids which directly target the airways and inflammation.”
“On our Facebook page, we get lots of comments and sometimes personal messages and emails. Because of the engagement, we find people say things like ‘we never knew that was the case, but now I know’,” said Dr. Helmy.
He found an example of Asthma Malaysia being a platform engaging in correcting misinformation. The question on one conversation thread was “Why do we gargle our throats after using a preventive inhaler?” A few people answered incorrectly and later, the right answer was given. The reason for gargling is there might be a build-up of thrush at the back of the throat due to the small amount of steroids in the inhaler. Gargling disperses the medicine from the throat.
For patients and caregivers, the website has information about different types of inhalers and how to use them along with what brands are out there. Generics are of course available in the market but according to Dr. Helmy, patients have to be aware that generics may not be as accurate in terms of their ingredients compared to brand types and they have to be from a reliable source. It is best that patients get advice from pharmacists and medical institutions about generics.
There’s also a blog and a resource page to download an Asthma Action Plan which patients could use as a template to fill in together with their doctors. The information is set in an easy to read layout. Dr. Sundari said it’s still a work in progress as they both would like to put in more information along the way.
The feedback from patients so far has been good and they are grateful for the support that the Ministry of Health has given to this effort to engage multiple stakeholders.
“What we ultimately believe is that people will take their medications appropriately if they understand why they have to take it. It’s as simple as that. When you don’t understand why, you’re not going to bother. Our goal is to make sure people don’t die from asthma unnecessarily. It is preventable,” Dr. Helmy explained.
For Dr. Sundari, she has this to say, “Our hope for setting Asthma Malaysia up is that in the next ten years, patients will run it. Hopefully, they’ll be able to have some say in policy, to fight for clean air and to be a voice about lung health in Malaysia.”
- Tobacco smoke
- Dust mites
- Air pollution
- Chest / ENT infections
Other asthma triggers
- Occupational asthma
- Food and drug allergies
Barriers to managing asthma long term
- Poor understanding of what asthma is and how to manage it daily
- Unaware of own triggers – each person’s trigger is different
- Using relievers only upon triggered symptoms
- Patients not asking questions and not getting right answers
- Misinformation about inhalers, why and how to use them