Written by Ashley Kroll
Diabetes has impacted my life for as long as I can remember. My mom was diagnosed with gestational diabetes in 1994, when she was pregnant with my youngest brother and, as is common among women with gestational diabetes, it soon developed into type II diabetes. Diabetes has become remarkably common in the United States. The Centers for Disease Control and Prevention report that 30.3 million Americans have diabetes (that’s 9.4% of the population) and 84.1 million aged 18 and older have prediabetes (33.9% of the US adult population). Additionally, diabetes is more prevalent among those in marginalized communities. According to the Diabetes Council, there are 4.9 million African Americans (18.7%) over the age of 20 who have diabetes and African Americans are at a 77% higher risk of developing diabetes than whites. 11.8% of Latinos/Hispanics have been diagnosed with diabetes and Latinos/Hispanics are at a 66% higher risk of developing diabetes than whites. Native Americans are 3.5 times more likely to develop a diabetes-related kidney failure than the rest of the United States.
These statistics are alarming. No less alarming is the impact that a diabetes diagnosis can have on someone’s life. Growing up, I knew that my mom took a lot of different medications, and I even saw her hospitalized a few times when we lost our health insurance and she wasn’t able to see a doctor or afford her insulin. I knew she was supposed to keep her blood glucose level under control, but she was never quite able to do so, and she didn’t feel well when her blood sugar was too high or low.
What was missing from my understanding, however, was the cumulative effect of these day-to-day ups and downs. The headaches, chronically high blood glucose and blood pressure, and regular hospitalizations were merely the visible effects of something that was causing long-term unseen damage to my mom’s body. The significance of diabetes began to set in when my mom had a stroke in 2008. Over the following years, my mom’s vision worsened, she began experiencing chronic nerve pain, and her kidneys began to fail. She began regular hemodialysis in 2015, which she will continue for the rest of her life or until she has a kidney transplant.
My mom’s stroke occurred months after I began college, and her health trajectory informed my educational and professional trajectory. I was a pre-med student, but soon realized that I was more interested in the social, environmental, and legal factors that impacted my mom’s life and health than I was in understanding the physiology of diabetes. While diabetes was common where I grew up, it was practically nonexistent among my liberal arts college peers and their families. Why did my mom, and so many people like her, develop diabetes? Why was it so difficult for her to manage her diabetes well? If the complications she experienced were so common, what was being done to prevent newly-diagnosed patients from having those complications? Ultimately, I wanted to know if the difficulties my mom experienced could have been prevented, and whether there was anything that could be done to improve her health going forward.
Immediately upon earning my JD and Masters of Public Health, I accepted a job as a Research Associate at OCHIN. I was drawn to the position because it presented the opportunity to work on a portfolio of three projects looking at the impact of the Affordable Care Act’s Medicaid expansion on our nation’s most vulnerable patients. One of those projects, PREVENT-D (Post ACA Reform: Evaluation of Community Health Center Care for Diabetes), looks specifically at diabetes care. This intersection of policy, research, and healthcare was exactly where I envisioned myself working, and I was eager to be involved with a project that directly related to such a personally important subject.
At the risk of sounding too technical, I’m going to outline the PREVENT-D project goals (known as the “Specific Aims[1]” to those in the research world). The first aim of the project looks at access – did the ACA improve access to care? The main objective of the ACA was to allow people to obtain healthcare coverage. Health insurance is essential to see providers, access medications, and receive proper help for chronic condition like diabetes. The second aim of the project looks at the care patients are receiving – are people with diabetes or at risk of developing diabetes receiving recommended screenings and preventive services, or are they falling through the cracks? If we can prevent people from getting diabetes in the first place, we can prevent them from experiencing a lifelong treatment regimen and possible health complications caused by diabetes. The third aim looks at actual patient health, as represented by various biomarkers. This speaks to how successfully the patient is managing their diabetes, and has implications for long-term health – if a patient has poorly-controlled diabetes, they are more likely to experience serious complications down the line. The last aim looks at healthcare costs to see if the ACA improves savings by helping patients receive care in clinics rather than the emergency department, and by preventing hospitalizations for preventable complications.
These elements of care – prevention, ongoing medical care, and complex disease management – are not as glamorous as a cutting-edge medication or state-of-the-art intervention. My mom’s life was saved through emergency brain surgery. However, she owes her currently improving health to the methodical, systematic, iterative work of her primary care team. The PREVENT-D research team is doing work that explores this day-to-day care. If we want to prevent tragic medical complications like the ones my mom has experienced, and improve health and quality of life for patients who have already experienced those complications, we should start by looking to the primary care teams who are leading the way, and the researchers who are shedding light on the work being done in our nation’s community health centers. As someone who has been so personally impacted by diabetes, I am daily in awe of the fact that I am able to contribute to this critically important body of work.
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[1] Aim 1. Compare pre-post ACA insurance status, overall visits, and chronic disease management visits among patients with DM risk, pre-DM, or DM, among CHC patients in expansion versus non-expansion states.
Aim 2. Compare pre-post ACA receipt of primary and secondary DM preventive services (e.g., screening for obesity, lipid levels, glycosylated hemoglobin) among patients with DM risk, pre-DM, or DM, among CHC patients in expansion versus non-expansion states.
Aim 3. Compare pre-post ACA changes in DM-related biomarkers (e.g., body mass index, blood pressure, lipid levels) in CHC patients with DM risk, pre-DM, or DM among newly insured (gained Medicaid in post-period), already insured (had Medicaid coverage in pre- and post-periods), and continuously uninsured (pre- and post-periods) patients in states that expanded Medicaid.
Aim 4. Measure pre-post ACA changes in Oregon Medicaid expenditures among newly insured compared to already insured CHC patients with DM risk, pre-DM, or DM.
About the Author
Ashley Krollenbrock is a Research Associate at OCHIN, where she primarily works on projects looking at how policy impacts health. Prior to joining OCHIN, Ashley received her BA in Biology from Reed College, where she wrote a thesis in Genomics, her Masters of Public Health from Tufts University School of Medicine, and her JD from Northeastern University School of Law, where she specialized in health policy, disability justice, and intellectual property law. Ashley is passionate about the how the intersection of law, policy, and the healthcare industry impact the health of marginalized populations, and the ways in which the research community can shed light on those impacts.
