'We Need People to be Incensed by the Health Inequality that Persists in This Country'

Jan 5, 2015, 9:00 AM

Felesia Bowen, PhD, PCPNP-BC, is an assistant professor at Rutgers University School of Nursing, and a Robert Wood Johnson Foundation (RWJF) Nurse Faculty Scholar (2014-2017). Her research focuses on community-based pediatric asthma care.

When I first began working as a pediatric nurse in New Jersey 20 years ago, I was committed to getting asthma care right. I worked hard to educate my young patients and their families about the disease, how to avoid the triggers that cause attacks, and how to use their medications. I wrote asthma action plans and prescribed the correct medications to control symptoms. 

It wasn’t always enough. One Monday morning, one of my young patients experienced asthma symptoms. The family followed his asthma action plan, “stepping” his medications in an effort to relieve his asthma symptoms. On Tuesday, he wasn’t feeling better, and went to the nurse practitioner (NP) in his school’s health office, who appropriately modified his treatment plan and called the asthma specialist to get a next-day appointment for him.

She remembers the young man telling her that he really needed to feel better, because he was going to his middle school graduation dance Wednesday night. On Thursday morning, he visited the NP again, still with asthma symptoms. He told her that he had missed the appointment with the asthma specialist because his mom couldn’t make it—she had health issues of her own, and three other children to care for. But he’d gone to his dance and proudly showed her his middle school class ring.

The NP made another appointment with the specialist for the following morning and gave him albuterol and other medications to help with his asthma symptoms in the meantime.  He never made it to the appointment. On Friday afternoon, I learned that he had suffered a severe asthma attack during the night and was on life support in the pediatric intensive care unit. When I saw him soon after, I knew that it would be the last time I would see him alive.

I’ve thought many times about that young man in the years since, asking myself how we could have served him better. Each of the professionals followed the various recommended protocols—prescribing, making appointments, following up, and so on. And yet this young man died from an asthma attack that was probably preventable. It’s tempting to blame it on bad luck, a missed doctor’s appointment, and a decision to go to a dance while his asthma was acting up. But children shouldn’t die because their parents can’t travel to the specialist appointment, or because they want to go to the school dance.

As health professionals, we need to make sure our patients, even the young ones, understand their illness and what they need to do to stay healthy.  Furthermore we need to ensure they have the means to do so, which means providing them with appropriate medications and devices that will help control symptoms and ensuring access to high quality care.

But that’s just the beginning. As a pediatric nurse practitioner I work with many children who have asthma; it’s one of the most common chronic diseases of childhood, affecting nearly 6.8 million U.S. children. I have three of them, in fact, which allows me to see the disease both through the eyes of a nurse and those of a mother. For many children, asthma symptoms—coughing, wheezing, shortness of breath—are largely under control, thanks to routine medications and modified behaviors. For them, asthma is little more than an annoyance causing them to slow down, take their rescue inhalers when playing, get to sports practice a few minutes before their teammates in order to start their warm-up exercises early, and cough a little longer when they have a cold.

Children shouldn’t die because their parents can’t travel to the specialist appointment, or because they want to go to the school dance.

But many children have a different experience. For them, asthma controls their lives. They experience breathlessness daily, frequently miss school, are in and out of doctor’s offices or emergency rooms, and are more likely to be admitted to the hospital due to serious asthma attacks.  

Working in health care as long as I have, you sometimes see research data come to life. In the case of asthma, it’s hard to miss. Some demographic groups of patients—in this case, minority children living in cities—are more likely to experience asthma than others. More than that, when they are diagnosed, they usually don’t fare as well as others. If that seems unfair, it’s because it is. In the United States, we refer to this phenomenon as a health disparity. The rest of the world calls it by a simpler term:  health inequality.

 As a clinician, I often experience feelings of anger and frustration when I care for children that I know should not be as ill as they are. True, there is not yet a cure for asthma, but the symptoms can be controlled so that children can live active, healthy lives. That requires teaching people about their asthma and giving them explicit plans to control their symptoms. They also need to live in an environment free of asthma triggers, and take medications on a daily basis.

That’s a lot easier for some children than for others, and for most of the children I care for, it’s hard. Many have Medicaid insurance, and many are uninsured. They live in communities with few asthma specialists, and some have very long waits for first-time appointments. They are more likely to be exposed to tobacco smoke, live in homes that have mold, mildew, dust mites, rodents and roaches—all triggers of asthma.  As a result, controlling asthma symptoms is more than most poor people can do on their own, as well as more than providers can do on their own. 

Is it fair that my daughter, who has severe persistent asthma, has not had any asthma-related absences, participates in sports and other activities, and is preparing for graduation and college, while another mother visits the grave of her son who should be enjoying his senior year of high school, participating in sports and preparing for college? Clearly it’s not, but we can’t throw up our hands and hang our heads in despair. We need specialty care that is really accessible: fast appointments, convenient hours to include evening and weekends. We need better housing conditions for families who live in urban areas. We need access to affordable medications. We need people to be incensed by the health inequality that persists in this country. Perhaps then we can begin to balance the scales toward equality. 

This commentary originally appeared on the RWJF Human Capital Blog. The views and opinions expressed here are those of the authors.