November 27, 2018

Alison Kenner, PhD, assistant professor of politics and of science, technology and society, has studied how people live with and care for asthma for more than a decade. Her new book, “Breathtaking: Asthma Care in a Time of Climate Change,” published by the University of Minnesota Press, examines this chronic disorder in light of global environmental changes.

What was your motivation for writing the book?

I wrote “Breathtaking” for two reasons: First, to document how people live with asthma from day to day, and also over the course of their lives, and second, to situate illness experiences within the broader contexts of environment and health care — both of which matter greatly for asthma care outcomes.

After a decade of ethnographic research, it also felt important to show how asthma is understood and addressed by different groups of people — patients, doctors, researchers, community health workers and athletic coaches, for example. By placing different contexts and approaches side by side, “Breathtaking” points to gaps in understanding about the disease, and also highlights care practices that are working, but have been overlooked in public health and clinical research.

You describe asthma as a global epidemic. Why is addressing asthma care critical in our society today?

Worldwide, about 339 million people are living with asthma, and it’s estimated that 1,000 people die each day from the disease. Asthma is also among the top 20 causes of years of life lived with disability, according to the World Health Organization. When you consider that many people are diagnosed with asthma during childhood — especially in the United States — and live with asthma on and off for the rest of their lives, that has a tremendous impact on the life of the individual and their families. Beyond this, asthma costs the United States $81 billion a year. Clearly, we need much better care tactics for asthma.

How would you describe contemporary understandings of the link between asthma and climate change — both in your field and in the public? How does your book figure into this wider discussion?

Global asthma prevalence rates are expected to rise over the century, alongside increases in greenhouse gas emissions; this will make asthma a greater public health burden than it is already. Experts also expect that climate change will make asthma more difficult to manage. For example, asthma symptoms are triggered and exacerbated by atmospheric matter like particulates, ozone, pollen and mold spores — all of which are projected to increase in certain regions, including here in Philadelphia.

“Breathtaking” does two things in the context of the wider discussion between climate change and asthma. First, it shows how breathers are currently impacted by these environmental conditions, how they understand environmental conditions like mold and air pollution, and also how they address environmental exposures in daily life.

The second thing “Breathtaking” does is document emerging efforts to teach people about climate change using existing asthma care infrastructures, like the U.S. Department of Housing and Urban Development’s Healthy Homes Program, mobile health apps and even clinical visits. I use these cases to explain how climate change is reframing how we think about asthma as a disease.

“Breathtaking” is described as an “ethnographic account” that accounts for “the lived experiences of people who suffer from disordered breathing.” Why was it important to focus the book on these lived experiences, and what other kinds of research did you conduct?

When I first began fieldwork for this project, it struck me that there was a gap between how asthma was described and discussed in the clinical and public health literatures, and how breathers actually relate to their disease. Take discussions around the problem of adherence, which center on why people do not take medication as prescribed. We know that some percentage of people diagnosed with asthma do not take medication as prescribed, and we have a good sense of why this is — although I think “Breathtaking” refines this understanding even further. I think the existing research misses what people are doing instead of taking medication; in other words, what non-pharmaceutical care practices have people developed and adopted to manage their disease?

We get at least two things by exploring forms of non-pharmaceutical care: We learn more tactics to cope with the disease, which could become areas for clinical research, and we also get a much richer sense of how peoples’ lives are shaped by the disease, including decisions about where to live, what jobs to take, who to socialize with, and how to get around town (or not). Ethnography, in other words, lends insight into impacts beyond medical costs — missed school and work days, for example, which are metrics we currently use to understand the national and personal burden of asthma.

What are some of the challenges faced by those who suffer from asthma? Do you see a way forward for our society to better address these challenges?

One glaring challenge that I document in my research is the cost of asthma care: Medication is incredibly expensive. People try to reduce the cost of asthma medication using a range of strategies, including lifestyle changes, but also pharmaceutical restriction. In some cases, asthma sufferers avoid using medication unless symptoms are exceedingly bad and perhaps life threatening. In other words, they might try to just breathe through lesser symptom events. People may also only take half or quarter doses of medications to make the prescription last longer.

It became painfully clear to me during the course of this research that we need to drop the price of rescue inhalers and preventative medications for asthma. We also need to expand access to routine and preventative medical care. This, of course, has been well documented in the public health literature on asthma. I think “Breathtaking” complements this literature by using personal accounts to describe how the prohibitive cost of asthma medication impacts daily life, as well as life decisions.

Do you plan to expand on this scholarship? What is the next step for this project?

Right now, I have three spin-off projects planned. The first is my ongoing work on community-based climate change education with the Climate and Urban Systems Partnership here in Philadelphia. Our project team has run a dozen workshops attended by more than 250 Philadelphians since 2014, and we are hoping to continue this work with a 2019 workshop series focused on the Climate-Ready Home. I write about this project in chapter five of “Breathtaking.”

A second project, very different from the community-based work in Philadelphia, would investigate how scientists are studying pollen and allergenicity in relation to climate change. Alongside this, I would investigate how researchers are working with regulatory agencies to build public health warning systems to address this specific atmospheric risk.

The third spin-off project stays with breathing, but focuses on the embodied relationship between sound and respiration. I’m planning this as an interdisciplinary project that would involve collaboration with musicians, dancers and health professionals. This project extends from a well-documented problem, which I highlight in “Breathtaking”: Breathing is vital for our lives, but largely goes unnoticed — unless you can’t breathe. I want to collaborate with people to make breathing more visible, and important, in our culture.

Learn more about “Breathtaking: Asthma Care in a Time of Climate Change” on the University of Minnesota Press website.