Editor’s Note: This blog post is written from the perspective of Gavin Arneson, with input and guidance from his academic advisor at New York University, Dr. Maya Clark-Cutaia.
In 1922, 14-year-old Elizabeth Hughes Gossett became the first person in the United States to receive an injection of insulin. At the time of her diagnosis with type 1 diabetes, there was no cure for the illness, and typical treatment included extremely low-calorie diets that could often lead to severe weight loss and starvation. Average life expectancy after diagnosis was three years. However, Canadian scientists had just isolated insulin, the hormone that allows the body to metabolize glucose and use it as energy, and were able to successfully use it to treat Elizabeth. The scientists responsible for its discovery sold their patents to the University of Toronto for $1, opening the door to a world in which this acute disease could be managed with lifelong treatment. For people like Elizabeth, diabetes was no longer a death sentence. She lived to be 71, dying not from diabetes, but from a heart attack.
Since 1922, medicine has changed, but the hallmark of diabetes treatment remains the same: insulin and lifestyle modifications. A world in which diabetes is a manageable illness has been within reach since the isolation of insulin; unfortunately, more than 80,000 people die annually from diabetes complications in the United States, and estimates suggest that comorbid conditions associated with diabetes result in over 270,000 deaths in the US.
These startling statistics make one wonder where we’re going wrong. I recently conducted a project to determine the questions that researchers have prioritized for diabetes care in the last five years. To do this, I used the National Library of Medicine’s Health Services Research Projects in Progress (HSRProj) database, which with over 38,000 records, is the most comprehensive repository of information on health services research in the United States. My research project, which won first prize in the HSRProj Research Competition for Students, found that research has primarily sought to address the management of diabetes by shifting behavioral factors and fostering improved self-management. While these are indeed important aspects of diabetes care, they leave little room to examine some of the most important underlying issues.
One cannot consider the impact of diabetes on the population without considering the inequities in its treatment. Disparities in diabetes management have always existed; Elizabeth Hughes Gossett was, in fact, the daughter of the United States Secretary of State when she was first treated with insulin. Today, however, disparities persist, and are being exacerbated. The mortality rate of death by diabetes remains higher for those of lower educational attainment, and lower socioeconomic status has been demonstrated to be a statistically significant indicator for both higher rates of morbidity and mortality, as well as poor diabetes management.
Additionally, type 2 diabetes is an illness that develops as a result of lifestyle factors. The CDC’s 2020 Diabetes Statistics report examined recent trends in diabetes incidence and found that today, the overall rate of diabetes incidence is similar to the rate in 2000; however, it has significantly increased for black Americans while remaining stable for white Americans. Also notable is that the incidence of diabetes is also increasing for individuals with lower levels of education relative to those with higher levels of education. As such, the disparity in incidence between individuals of the highest socioeconomic and lowest socioeconomic status is becoming larger.
Today, one need not be the child of a politician to receive insulin; however, one of the scientists who sold his insulin patent for $1, Frederick Banting, described a world in which nobody should die of diabetes: insulin “belongs to the world, not to me.” We’ve not yet achieved this vision. In 2016, when I was 18 years old, my father died of diabetes. He had lived with and managed his type 2 diabetes but had struggled to continue to afford his insulin and doctor’s visits, and was unable to keep up with diet and exercise routines. As a high school student, it never occurred to me that his death happened in the context of a system—a community, a health system, and a geographic environment, and was influenced by decisions made by very powerful people who lived very far away. I had believed—and he did, too—that we were always the product of our own choices. Research that prioritizes behavioral modifications in the management of diabetes embodies the same assumption.
I share a similar experience with Dr. Clark-Cutaia, my fellow author on this post. Dr. Clark-Cutaia’s father, an Army veteran living on a military installation overseas, suffered a heart attack and was incidentally diagnosed with type 2 diabetes during her freshman year of high school. She would work to help the family maintain lifestyle modifications, however, the care that was available (i.e. medications, glucometers, etc.) was limited due to where he lived and the fact that he received care on the Army installation.
2020 is the “Year of the Nurse,” and as nurses and allied health professionals, we see this dilemma every day: when we send patients home to environments where it is difficult to maintain imperative lifestyle modifications; when our patients tell us they have missed doses of medication due to its cost; and when we know that necessary community resources are simply not an option for some of our patients. Diabetes is inherently an illness that requires individual behavioral change, ranging from diet and exercise, to medication use and wound care. However, when patients have to manage an illness, we know that it is always happening within a specific context that might make it difficult to do so, and sending patients home from the hospital sometimes poses ethical challenges.
As the results of my research project pointed out, often, the question being asked in research is “How can we best educate and influence individuals to adopt healthier lifestyles?” The paradigm in which this question is asked is one that frames the individual as the principle agent of change in their health. While important, with the disparity in diabetes incidence growing larger, this framing comes up short for both diabetes incidence and mortality reduction: overall diabetes mortality rates have decreased slightly since 2004, but have remained relatively stagnant. And as nurses know all too well, sending people home to lived environments that are not designed to facilitate and sustain necessary lifestyle adjustments is a part of why we come up short.
It is time for a new diabetes paradigm that focuses on the design of systems that better serve communities of color, low-income communities, and communities of lesser educational attainment. This shift starts with our own research questions. Will our studies account for socioeconomic limitations of the most underserved and underrepresented communities? Will our studies’ implications call for more action on the part of the health consumer, or will it call for changes to the health system as a whole? How do we ensure our study frameworks are asking questions that will allow us to advocate for evidence-based system reform, and not changes in self-management behavior? There is not a one size fits all approach, but it is clear that, in the context of growing disparities, flat mortality rates, and increasing incidence, the status quo has got to go. If we direct our immense research talent on beginning to ask questions within this framework, we may finally get closer to fulfilling the promise of insulin—that nobody should have to die of diabetes.
This competition is hosted by AcademyHealth and the National Information Center on Health Services Research and Health Care Technology (NICHSR) of the National Library of Medicine (NLM).