Let's be frank – discussing the medical treatment plan will sound like a bunch of letters in soup. We encounter acronyms, biological mysteries, and a mountain of sometimes conflicting information to sift through. If you or a loved one are among the millions of Americans living with persistent asthma, then you are surely aware that there is more to it than simply obtaining a prescription from a provider. This is a delicate inflection point – one that reflects your daily life and integrates a balance among yourself, your body and your provider. It involves resuming your life at a pace that allows you to continue living, an active, full life, instead of reacting to another bout of dyspnea.
This is not continuation of an academic textbook; think of this as an in-depth conversation, basically a well formed guide from a qualified friend who has done the homework. Together, we will travel the terrain of persistent asthma treatment in America, the wherewithal of the treatment (why and how), translating the science into relatable concepts and exploring challenges that are very real-world measurable phenomena to implement the caregiver's plan.
Persistent asthma is more than a cough or the occasional wheeze. It is a consistent low grade of inflammation within the airways, a hum of sorts that is always 'on' from your lungs. Moreover, this inflammation creates a hypersensitivity in your bronchial tubes. Imagine your lung's airway tubes working like a overly competent mall security guard operating at a hypervigilance level - overreacting to triggers that another person's lungs may ignore. Triggers can be something as simple as pollen in the air, a cold breeze, laughing and turning it into coughing, or stress.
For asthmatic patients, it relates to the frequency of interruptions experienced throughout the daily life, as related to the individual's symptoms. When you have persistent asthma, that signifies that your symptoms are a normal part of your week where flare-ups may occur multiple days a week or even on a daily basis. Waking up at night coughing or unable to breathe is a common symptom of uncontrolled asthma. This continuous state of being on alert is what necessitates a treatment plan apart from the "rescue" inhaler (the quick-relief inhaler) and is now one of control.
The single most important concept in contemporary asthma care is this: It is our goal to treat the fire, not just the smoke. The smoke is the wheezing and tightness; the fire is the inflammation happening underneath the mucus. These are called daily maintenance medications. They are therefore your work horses, your preventative sentinels that allow over time for the medication to calm your irritated airways, allowing them to be less reactive with triggers and to dampen the likelihood of attacks altogether.
The absolute champions in this category are Inhaled Corticosteroids (ICS). Now hold on for just a second before you become disheartened by the word "steroid." These are not the anabolic steroids used by some athletes for performance enhancing. Instead think about it like a super-powered steroid cream that is very focused and is use for an inflammatory condition, eczema, but instead of in a cream, you are inhaling it for treated your lungs.
Inhaled corticosteroids are medications like fluticasone (Flovent), budesonide (Pulmicort), and beclomethasone (Qvar), that are delivered directly into the area of concern with little absorption into the rest of the body. They are very effective at reducing swelling and mucus in the airways, thus reducing the frequency and intensity of attacks. Using an ICS daily is about the closest you will get to a fundamental therapy in the management of asthma.
For some, one long-term asthma medication may be sufficient. For others, with a little more stubborn asthma, doctors will often prescribe a second long-term controller medication: a Long-Acting Beta-Agonist (LABA). LABAs (such as salmeterol (Serevent) or formoterol (Foradil) function by relaxing the tight muscles around the airways, helping keep the airways open for up to 12 hours.
The key point here is that LABAs are never used by themselves. They are always used with another long-term controller medication, the Inhaled Corticosteroid (ICS), and therefore always found in a combination inhaler. That means you will always see medications like Advair (fluticasone/salmeterol), Symbicort (budesonide/formoterol), or Dulera (mometasone/formoterol) which is a combination of an ICS and a LABA. The combination addresses both parts of the asthma problem: the inflammation (ICS) and the bronchoconstriction (LABA).
Asthma care is not standardized. The American system in particular adds to the complexity of asthma care because there is a common approach, shown as the treatment ladder, when thinking about how to treat the child or adult patient (these drugs are easily interchangeable) based on the severity of their asthma (step 1: intermittent, step 2: mild persistent, step 3: moderate persistent asthma, step 4: severe persistent asthma).
The American system applies a structured set of national guidelines (e.g. NAEPP - National Asthma Education and Prevention Program) to create the clinical practice guideline approach. The guidelines are simply a step approach, for example they have the clinician/caregiver/parent which step matches the child's asthma severity, then up-step if not controlled, step down if the asthma has been stable for 3-6 months.
We want this stepping process to be a conversation with your doctor. Our goal will always be to achieve the lowest medication dose possible while you have the most comfortable living experience with the least amount of side effects.
For a smaller subgroup of individuals with severe, uncontrolled asthma that does not improve with high-dose inhalers, biologic therapies for asthma developed rapidly in around the last decade and is nothing short of a revolution. These are not drugs as you would typically consider! Biologics are quite complex molecules, usually antibodies, developed in a laboratory to attack very specific pathways in the immune system that cause inflammation. If we can think of it this way - inhaled corticosteroids are a fire hose that sprays the whole house down, while biologics work like a sniper rifle with precise aim.
Quite frequently, biologics are identified for specific asthma phenotypes by studying biomarkers. For example:
Biologics can be administered as injections or infusions every 2-4 weeks. While they are expensive and only recommended in critical cases, for the right patient, they can be life-changing, resulting in the ability to significantly and sometimes completely reduce oral steroid use while achieving control.
Writing a prescription is the easy part, and the real work of managing asthma happens in between office visits. It's about the daily commitment to using your inhaler, even though you feel fine, because that's exactly why you feel fine. It's helping a patient master the process and technique, as a surprising amount of medication is never deposited into the lungs when inhalers are not used correctly. Spacer devices are underutilized, but they increase the sort of medication that winds up where it is needed in the lungs, especially with metered-dose inhalers.
It's also about becoming an investigator into your own body. What are your triggers? Is it the spring oak pollen? The cold virus your child brought home from school? The bleach smell in the hall? Stressors related to looming deadlines? Often keeping a simple, albeit vague, log helps build connections between exposures and symptoms, allowing patients to prevent or prepare for exposures from known triggers.
And finally, it is about the partnership. The best asthma care is a partnership. It is about the doctor who listens to your concerns about side effects and does not simply dismiss them. It's about a respiratory therapist who takes the time to watch you use your inhaler and correct you. It's the pharmacist who helps sort through the complicated health insurance formulary system and generic alternatives. You are the CEO of your health team, and getting a good team is key to asthma care.
And, finally, we can't have the discussion without discussing the insane amount of systemic barriers, including cost barriers. Asthma medication costs are sky high in the American system. A brand-name combination inhaler can cost literally hundreds of dollars out of pocket. Even with insurance, high deductibles and co-pays can still be a financial burden on families. This puts patients in a horrible position. Patients ration medications - use their medication every other day or skip doses or 2 days to stretch out medication. Again, a perfect example of behavior that can cause worse control, increased emergency room visits, and increased healthcare cost - a vicious cycle that is both a tragedy personally and a failure systemically.
Navigating this requires proactive advocacy. It means talking to your doctor about generic options, which can be far cheaper. It means checking pharmaceutical company websites for patient assistance programs and copay coupns. It means appealing to your insurance company if a necessary medication isn't covered. It's an exhausting, unfair part of the battle, but it's a reality for many.
Access to care is another layer. There are considerable differences of asthma outcomes surrounding socioeconomic status, geographical location (i.e., "asthma deserts" with limited access to specialists), and racial inequities. Low income and minority communities tend to suffer from higher rates of asthma partly due to the burden of the environment but lack access to medication and specialty care to manage their asthma. Incremental change will not fix this problem; it includes the price of medication, access of medication, access to specialty care, and public policies that drive health equity.
Among the existing inhalers and the more exciting rapidly developing biologics, there lives a class of oral medications that are not likely to get much love, but deserve it: leukotriene modifiers. The most ubiquitous is montelukast (Singulair), an oral solution taken once daily, that works by blocking inflammatory molecules called leukotrienes. The leukotrienes are special, as they cause inflammation, mucus production, and bronchospasm immediately (and thus, managing them is similar to managing the escalation of asthma).
What is special about leukotriene modifiers is their versatility. They are particularly helpful in exercise induced asthma or sensitivity to NSAIDs (e.g., aspirin). Moreover, they are also quite useful for patients with asthma and allergic rhinitis (i.e., stuffy, sneezy nose that travels with asthma). For supportive parents, leukotriene modifiers could provide relief for children (4-5 years) that have not yet mastered the inhaler technique.
However, these oral medications are not without their doubts. Reports of mood changes in children have been documented in the literature and lead to a warning on the label. These reports also include parents and families reporting irritability, vivid dreams, to more substantial psychiatric symptoms. It's not true everywhere (and arguably not universally), but it's true enough that doctors these days are more willing to have careful conversations about risks and benefits. The key take-away is that risk is always present in treatment with drugs, and communicating honestly about what you're feeling is crucial.
Let me give two examples. Sarah is a 34-year-old marketing executive living in suburban Denver. She has moderate persistent asthma that is well-controlled on a medium-dose ICS/LABA combination inhaler. Her insurance covers most of the cost, so her copay is about $40 a month. She sees her pulmonologist two times a year, gets the flu shot every year, and has learned to avoid her two main triggers, cat dander and certain perfumes. Sarah's inhaler technique is spot-on—the respiratory therapist in her doctor's office spent twenty minutes with her developing technique. She exercises reasonably regularly, travels for work without difficulty, and most of the time, she does not even think about having asthma.
Now meet Marcus, a 28-year-old construction worker in rural Mississippi. Marcus also has severe asthma, but his situation is very different from Sarah's. For Marcus, the nearest pulmonologist is two hours from his home, making it difficult to find time to leave work to attend appointments. He has a high deductible insurance plan, so he basically has to pay the full price of his medications until he hits his $6,000 deductible, which he never comes close to hitting. He has tried to make his rescue inhaler last by only using it sparingly (which is to say, he waits until he feels like he needs it to use it), which resulted in a pretty bad experience that landed him in the emergency room one night. His emergency visit ended up costing him $3,000, nearly all of his savings. He is back to rationing medication, caught in a cycle that is both medically unsafe and financially devastating.
These are not hypothetical cases - they typify millions of real Americans living in very different realities in the same healthcare system. The differences are not just geographic or economic, but in the whole ecosystem of care that envelops and accompanies them.
Asthma is not randomly distributed across the American landscape. There are clear, identifiable trends that tell uncomfortable truths about environmental justice and health equity in America. Children in inner-city neighborhoods can have asthma rates that are three or four times higher than children in the suburbs. It is complicated, with many layers. There is aging housing stock with mold and pest issues, proximity to highways and industrial pollution, urban heat islands resulting in concentrated allergens, and economic frailty itself - which can be a symptom trigger.
The South Bronx in New York has crystallized this unfortunate situation into a case study. People living in the Bronx have some of the highest asthma hospitalization rates anywhere in the country. The neighborhood is located at the intersection of several major highways, has several waste transfer stations, and has the density of diesel truck traffic that would make an experienced logistics manager shake his head. Add to that the older apartment buildings with inconsistent ventilation and maintenance issues, and there is a recipe for poor respiratory health and exacerbation of symptoms.
But here is where this story took a turn - community activism began to create change. Residents organized, asking They advocated for limitations on routes for diesel trucks, demanded improved enforcement of housing codes, and pushed for new community health centers. The Bronx has unique asthma intervention programs that combine medical care with environmental remediation—helping families to identify triggers in the home and do something about them while ensuring that medications are being taken appropriately.
For adults, work can be a refuge from asthma triggers or the cause of them. Occupational asthma, caused or made worse by workplace exposures, affects several hundred thousand Americans. The tragic irony is that you need to work to afford asthma medications, which could also be making your asthma worse at the same time you are working.
The legal environment around occupational asthma is a frustratingly confusing mess. Workers' compensation claims for respiratory problems are historically very difficult to prove and even more difficult to win. It is also hard for employers to acknowledge workplace hazards, and many workers fear retaliation for reporting a problem. At the same time, the impacted person is stuck, managing a condition that their work might be exacerbating.
Some progressive companies take this seriously. They are installing better ventilations, moving to less toxic cleaning products, and providing appropriate respiratory protection. However, changes are slow and often, a crisis—a cluster of workers developing noticeable symptoms—is what it takes to catalyze action.
Living with chronic asthma is not only taking care of your body. There is a mental health aspect that often gets insufficient emphasis. The anxiety that comes with having trouble breathing can be overwhelming. When you can't breathe, your body becomes a fully alarmed state. Your heart races, you sweat, and you think you are dying- because your body, in the most real way, thinks it might be.
Over time, this can create a vicious cycle. Anxiety can trigger asthma symptoms, and asthma symptoms anxiety. People can even develop a condition that psychologists refer to as "air hunger" – a persistent sense of not having enough air, even when their oxygen levels are normal. Others become hyper-vigilant about how they are breathing and monitor their chest around every sensation. Paradoxically, this heightened awareness of sensations often helps people become aware that normal sensations have forms that can be interpreted as symptoms.
Depression is more common with chronic asthma, especially when activity is limited. When you can't participate in activities that you engage in sports, when the triggers pull you out of gatherings, and activities, when the medications and appointments involve intense management, it adds weight. And don't forget the added stress of finance, and the anxiety of paying for medical debt, not working because of sick days, or worrying about how to pay for medications.
Mental health support should be included as part of comprehensive asthma care, but most of the time it is not. Family medicine doctors are focused on lung function and tweaking medications. Pulmonologists are deeply connected to the physical act of breathing. Psychologists and psychiatrists do not usually have a solid grasp of chronic respiratory conditions. There are patients that fall through the cracks, and they never get support for breathing, let alone being troubled by breath and emotions.
The revolution in digital health is finally seeping its way into asthma care. There are cell phone applications that track symptoms, track medication use, and track environmental conditions; these applications can be shared in order to track patterns that may also be overlooked by physicians or patients. There are some applications that connect to air quality monitors and alert the patient when the conditions go outside a "normal state", and pollen increasess, for example.
Perhaps the most promising technology is the smart inhaler. Smart inhalers track when medications are being used, how they are used, and can even inform the doctor when a method of administration was done appropriately. They can remind patients when to take their doses and alert the doctor when a concerning pattern arises. If someone suddenly begins using their rescue inhaler much more frequently, that is a red flag indicating that the existing maintenance therapy should be reconsidered.
While peak flow meters - which measure air flow out of the patient - have been around for decades, new electronic meters can now automatically log and transmit readings to caregivers. This real-time monitoring can catch problems before they become crises.
The challenge, as with many healthcare technologies, is integration. Having data is only useful if it gets to the right people at the right time in a format they can act upon. Patients frequently were record their symptoms in an app that no clinicians ever review, or upload their measurements that disappear into an electronic health record that their physician will never see.
Childhood asthma is fraught with complications that extend far beyond medicine. School-aged children miss an average of 13.8 million school days each year for asthma, undermining their education, social development, and family stability. Parents take time off work to help a sick child or attend medical appointments, which has further economic consequences at the community level.
The psychological impact on children can also be significant. Children with asthma often feel different from their peers, and their ability to participate in playground activities, sleepovers, or other events is impaired when pets are involved. Anxiety around exertion permeates children's psyche, even with well-controlled asthma. Some children will become overly cautious in response to their asthma, while others choose to ignore it completely.
School administration of asthma exacerbates the variability which creates challenges for children. Many schools have RNs with full action plans for asthma management, while others have policies that have children store inhalers in the nurse's office instead of them carrying them in their backpack. Education about asthma varies greatly for teachers. Some teachers can identify classroom triggers, and respond calmly to emergencies, while others are panicking at the first wheeze.
Transitioning to self-management is also complex for adolescents. Teens are notoriously incompetent in chronic disease management, and asthma is not any different. The prefrontal cortex which is involved in impulse control and planning is not fully mature until a person reaches their mid-twenties. This development period of growth and brain maturation presents an obstacle to children successfully taking their medications. When factoring in the typical adolescent sensibilities of believing they are invincible and wanting to fit in, it becomes clear that challenges are looming.
The future of asthma therapeutics is moving to a more personalized medicine approach where researchers are attempting to find specific genetic markers to ascertain if specific patients will respond to specific medications. This will assist with some of the current trial and error-based use of medications.
Immunotherapy is demonstrated to be more effective in certain groups, which is basically training the immune system to stop overreacting to certain triggers rather than utilizing traditional allergy shots. People have been evaluated on the effect of using sublingual immunotherapy (tablets that dissolve under the tongue) to increase compliance, which is more practical than weekly injections. Further to evaluate if early use of some of these therapies will prevent asthma from occurring in children with elevated risk.
New drug targets are being developed as more is learned about the underlying mechanisms of asthma from a molecular perspective. Drugs that target specific inflammatory pathways, promote reconstitution of damaged airway tissue, and modulate the microbiome (community of bacteria and other microorganisms present in the lungs) are all in development.
Bronchial thermoplasty, which is a treatment that uses heat to denervate smooth muscle in the airways, is a completely different approach. Rather than reduce inflammation with drugs, this procedure limits the airways ability to constrict. While this technique is relatively new and used in limited cases in patients with severe symptoms, preliminary results of efficacy are positive.
It is becoming apparent for healthcare providers that asthma treatment will only be as effective as the incorporation of cultural aspects. Every community has varying perceptions of illness causes, treatment options, and the involvement of family members in the healthcare process. Language barriers may make it an impossibility to teach proper inhaler usage, and stigmas surrounding mental health may cause disclosure hesitancy when anxiety and depression coincide with chronic illness.
For example, some Hispanic communities possess "folk" beliefs regarding "susto" (fright) or imbalances in temperature that may conflict with biomedicine's explanations regarding asthma. A culturally competent provider learns to integrate these beliefs into the existing cultural framework rather than replace them with biomedical determinants.
Community health workers, who often have membership in the community for which they provide service, have already begun to prove invaluable at bridging this training gap; they can provide education in appropriate languages and with cultural working knowledge, thus assisting families through unfamiliar and complicated health systems. Any program that trains community members to provide education and supporting asthma care has demonstrated successful outcome improvement.
Partners, parents, and caregivers of people that suffer from persistent asthma have their own invisible burden. This includes hypervigilance—listening for changes in breath patterns, monitoring for early warning signs, and calculating how long it has been since a rescue inhaler was used. There is the logistical complexity of remembering when to take the medications, arranging for doctor visits, ensuring an inhaler is available at all times when your family is out and about.
Caregiver costs are often an unfair burden, as they must often choose their employment solely based on income and health insurance benefits. A caregiver may need to leave work for an appointment or stay home from work during an asthma flare-up or similar conditions, affecting job security and promotional possibilities.
The emotional toll can be substantial. To watch a loved-one struggle to breathe can be terrifying. The unpredictability of asthma can create chronic stress. Relationships can change and be difficult when the medical condition is ever-present or needs attention. Day trips or outings with a family require planning if there are potential triggers involved.
Caregiver support groups are not widely available to families and caregivers but both have value in self-sustaining care. Hearing and sharing experiences with families who understand from personal experience relevant to your family—nighttime emergencies, working with an insurance company—across to offering advice and encouragement is needed emotionally and as well to best prepare.
Persistent asthma is a marathon, not a sprint. Asthma have days of better and worse than other days. The bottom line is not simply to demonstrate that you have a good spirometry test either. The goal being able to laugh deeply and not cough, to run, to play with your kids, to sleep uninterrupted, and to walk amid beautiful spring days.
The goal involves constructing a plan that works for you and is sustainable, at least, for a prolonged amount of time. A plan can include treatment with appropriate medications, know your triggers and be aware of them, have a good relationship with your doctor and medical team, and solidify the stubbornness of asthma or the condition not defining your boundaries.
It is true that the therapies change, and the future holds new treatment options that will at a minimum better personalize effectiveness of therapies. Where you are headed takes vigilance, admirable education, and determination to arrive at the life you want—it's worth it, breath by breath in life fully lived.
The America healthcare system, has great care involved with asthma treatments around-the-world. The challenge is that everyone who needs treatment can access them. This issue or question/topic is not just about the medical consideration but it is also a social, economic, and political question that requires advocacy action on every level—community, state, and national level.
But maybe the most important message to hear is this asthma diagnosis doesn't have to force anything into a win. With the correct mix of medical care, knowing some aspect of or a lot of what it means to be aware of your environment, then on top of that having social support care; with personal resolve, peace, and meaning, a person with persistent severe asthma can live a full and enriched life. All that we really need to do is collectively figure out what it means for you and simply not take for granted that you should experience anything less than breath, no matter what it means.