Financial Barriers in Emerging Adults With Type 1 Diabetes: A Qualitative Analysis

We used a qualitative thematic approach to analyze interviews with emerging adults and parents of emerging adults. Interviews were conducted to assess needs to achieve target A1C levels. This study was approved by the University of Utah Ethics Review Board (IRB #00126057).

Emerging adults with type 1 diabetes and parents of emerging adults with type 1 diabetes were recruited by contacting endocrinology and primary care clinics and through social media posts to a private online group for people with type 1 diabetes. Emerging adults who wished to participate were included if they were 1) 16–25 years of age, 2) diagnosed with type 1 diabetes, 3) receiving care for type 1 diabetes, and 4) able to read and speak English. Parents who wished to participate were included if they 1) had a child aged 16–25 years with type 1 diabetes who was receiving care and 2) were able to read and speak English. Both emerging adults and parents of emerging adults were excluded if they were unable to read and speak English.

Emerging adults and parents of emerging adults were interviewed by telephone. Interviews were conducted by a male trained research assistant with type 1 diabetes (E.G.G.). Individual interviews focused on what supported and did not support diabetes self-management and what interventions they perceived would be helpful for themselves or others with type 1 diabetes in their age-group. Each interview lasted on average 30 minutes. There was no prior relationship between participants and the research team. No participants discontinued participation. A semi-structured interview guide (Table 1) was developed and pilot-tested on an emerging adult before use. All interviews were audio-recorded, transcribed verbatim, and verified for accuracy without being returned to the participants for additional comments. No repeat interviews were conducted.

A sub-analysis of the data were conducted, extracting text specific to access and affordability of diabetes medications and supplies. Using principles of qualitative thematic analysis (8,9), we coded data using NVivo, v. 11 (10). First, the authors (E.G.G., M.L.L., and M.E.P.) coded three emerging adult interviews to develop the initial codebook. The authors coded the remaining adult and parent interviews in pairs or individually using the codebook. Using an open coding approach, new codes were added on an ad hoc basis (8). Codes were compared, contrasted, and collapsed to develop corresponding themes (11,12).

Participants were 33 emerging adults with type 1 diabetes and 17 parents of emerging adults with type 1 diabetes. The mean age of emerging adults was 20.1 ± 2.9 years, and the mean age of parents was 47.5 ± 6.9 years. Participants were overwhelmingly White (90% for emerging adults and 94% for parents); therefore, results are representative of the White experience. The majority of the emerging adults were using a CGM system and insulin pump (n = 24 [73%]). Additional demographic details are shown in Table 2.

Four themes emerged from the data: 1) affordability of diabetes management tools, 2) managing insurance, 3) communication with pharmacies and HCPs, and 4) emotional consequences of financial stress. Below we provide excerpts from the interviews to illustrate the important themes.

Participants had mixed ability to afford their diabetes management tools. Many emerging adults indicated that, even with insurance, the high cost of diabetes management tools prevented them from easily obtaining insulin and diabetes technology (e.g., an insulin pump or CGM system). When discussing concerns about affordable insulin, one emerging adult stated, “It was actually cheaper for us to go to Mexico and pick up insulin from the pharmacies in Mexico and drive back to Utah” (female, 20 years of age).

Besides the basic necessity of insulin, other diabetes management tools may be out of reach to emerging adults due to cost. One emerging adult stated, “The supplies are incredibly expensive. My CGM has been really nice, but I’m probably going to have to change CGM [systems] because we’re not really able to afford this one” (male, 23 years of age). Another emerging adult stated, “As far as technology goes, money would be [a] problem. That’s why it took me so long to get a CGM and why I still don’t even have a pump yet. Working through insurance can be frustrating and difficult” (male, 22 years of age).

Several emerging adult participants were still on their parents’ insurance plans, which eased financial worries and allowed them to access their desired diabetes management tools. A parent of an emerging adult stated, “We have great insurance so as far as technology. She’s got what she wants right now” (female parent, 61 years of age). One college student explained that affordability was not a concern at the moment, stating, “I’m still on my parents’ insurance. My dad’s got pretty good insurance through his work, so I’ll just stay on until I’m out of college” (male, 22 years of age). However, emerging adults expressed worries about future insurance coverage. One emerging adult stated, “We’re all pretty scared for once we’re off, like, parents’ insurance. Once we are on our own, we don’t really know what to expect” (female, 20 years of age).

Emerging adults and parents alike had challenges understanding their insurance and coverage for type 1 diabetes medications and supplies. Nuances in pharmaceutical and DME benefits were confusing. There were also sudden changes in what was covered (e.g., insulin brands), resulting in frustrations. As one parent stated:

The time required for emerging adults to continuously navigate systems of insurance companies, pharmacies, and HCPs was described as an ongoing challenge. Frustration regarding the time spent managing insurance was prevalent among participants. One emerging adult stated, “Every time I do a re-up on my pump, they always deny it the first two times because they say that they don’t cover it, even though I’ve had this same insurance company the last 3 years” (male, 19 years of age). Another emerging adult recounted that “health insurance really fights us on a lot of things. We fought with them for 6 months to cover my initial diagnosis hospital stay” (female, 16 years of age).

In addition to contacting insurance companies, time was also spent working with pharmacies and HCP offices. Emerging adults reported challenges in managing multiple systems when trying to get diabetes medications and supplies. One emerging adult stated, “There’s that time of waiting on the phone to get ahold of a pharmacy tech or to talk to your doctor about sending a new prescription. I wish that there was a way I could just submit a request online” (female, 23 years of age). When discussing time spent contacting HCPs, one emerging adult stated, “That can be a struggle, because sometimes we play phone tag just trying to get time that works for both of us” (female, age 19 years). These challenges sometimes result in lapses in filling prescriptions, including diabetes technology (e.g., CGM sensors and pump supplies) and insulin. Participants were interested in learning strategies to better coordinate with pharmacies and HCP offices.

Lapses in communication between insurance companies, pharmacies, supply companies, HCPs, and patients make it difficult for emerging adults to maintain sufficient stores of diabetes management supplies. Emerging adults must then spend additional time navigating these problems. One emerging adult stated, “I always seem to have trouble when it comes to having to order new supplies. It’s so hard with my insurance sometimes to get the right stuff at the right time” (male, 22 years of age). Coordination of these entities was especially challenging as described by one participant:

Other challenges were related to the need for multiple diabetes-related prescriptions that are not always filled simultaneously or that require frequent refills (e.g., monthly versus every 3 months). As one parent described, “Trying to get prescriptions is a pain in the butt. You know, like, this is something that, obviously, they’ve got to have . . . to live. I don’t understand why we have to do refills every time we turn around, you know? So, to me, that is a huge barrier” (female parent, 52 years of age).

Both emerging adults and the parents expressed emotional distress regarding overall diabetes financial costs and working with insurance on finding affordable supplies. As one parent stated, “The frustration is the overwhelming cost and the price gouging of insulin. Our insurance company gets all the prescriptions for insulin through Canada because it’s so much less expensive, and I just think that’s ridiculous” (female parent, 51 years of age). Occasionally, emerging adults said they fear that they will not receive their supplies in a timely manner because of financial issues, resulting in serious complications. One emerging adult noted, “It’s really obnoxious. And, you know, time is money, and time is scary. Sometimes, diabetics don’t have that kind of time to get their supplies” (male, 19 years of age).

Emerging adults and parents indicated spending a lot of time on the phone with insurance to understand financial coverage and how much to pay for supplies, in addition to provider visits, which becomes overwhelming. As one parent of an emerging adult described her experience dealing with insurance, “I was able to really fight it. For other people, I could see not being able to fight, and just [being] like, ‘Oh, I guess I have to pay this much money,’ when it’s just the insurance trying to pull one over on us” (female, 42 years of age). Dealing with insurance companies was likened to a never-ending battle.

Emerging adults experience emotional distress as they begin to understand the financial burden that their parents have experienced when managing diabetes costs. As one parent stated:

In contrast, one emerging adult stated that she will worry about the costs of diabetes in the future, “When I turn 26 and get kicked off [my parents’ insurance], that’s when I will probably start to worry a lot” (female, 20 years of age). None of the participants were comfortable with how much they had to pay to manage diabetes, and yet they understood how vital it was to life.

Our findings suggest that emerging adults with type 1 diabetes face several financial and time barriers that cause emotional distress. These barriers include the inability to navigate finances, insurance, and obtain medications and supplies that can ultimately affect their diabetes management. Parents of emerging adults with type 1 diabetes are especially concerned about their child’s ability to manage these challenges alongside life transitions.

The cost of insulin and diabetes supplies is untenable for most emerging adults with type 1 diabetes. In this study, emerging adults relied heavily on their parents for insurance and financial assistance. Emerging adults, and the general population, often lack knowledge about their insurance because of ever-changing and complicated insurance coverage policies (e.g., coverage for various insulin brands or diabetes technology). Litchman et al. (6) found that those with health insurance still struggled to obtain medications and supplies because of high deductibles and extremely high copayment requirements. In our study, participants were obtaining insulin from other countries (e.g., Canada or Mexico) because of the high cost of insulin in the United States. Some states have enacted insulin copayment caps; however, no data exist to describe how these policies are influencing insulin rationing behaviors. Furthermore, these policies may not benefit individuals without insurance. Although emerging adults can stay on their parents’ health insurance plans until the age of 26 years, some may not have parents who have a family health insurance plan and therefore are challenged to obtain medications and supplies even earlier. Additionally, some Medicaid plans do not allow emerging adults >19 years of age or, in some cases, >21 years of age, to remain on their parents’ plan, causing additional stress to obtain insurance coverage (13).

Emerging adults must traverse several communication barriers to obtain the medication and supplies they need. These communication barriers include prescribing HCPs, pharmacies (sometimes multiple, such as local and mail-order services), DME companies, and insurance companies. Prescription delays can result from an overdue visit to the HCP (e.g., a lapse after transitioning from pediatric care, secondary to busy schedules, or because of an inability to pay the copayment), low stock at the pharmacy or DME company, delayed shipping from the pharmacy or DME company to the patient, and the need for prior authorizations. Efforts to develop systems that can simplify the communication process are needed.

Emerging adults face emotional consequences when they experience diabetes-related financial stress. Inability to access the tools needed to manage their diabetes can result in negative consequences such as complications (e.g., diabetic ketoacidosis, microvascular disease, or macrovascular disease), hospitalizations, and missed school or work because of hypo- or hyperglycemia, all of which can be costly. Although Berg et al. (14) have shown that parent involvement is helpful during emerging adulthood, increased financial dependence on parents may result in parental financial distress and emerging adult guilt (6,15).

The current health care system is ineffective and cumbersome. As a result, it allows people to fail at managing their diabetes because of high costs, poor insurance coverage, and other financial barriers. Although some solutions to obtaining insulin exist (e.g., coupons, vouchers, and emergency fills), they are temporary, and many people are not be eligible. Policymakers should use the results from this study and evidence from others addressing diabetes-related financial distress (4–6) to inform new policies that protect individuals with diabetes, including vulnerable populations such as emerging adults, from having to ration insulin.

Financial interventions are necessary to improve emerging adults’ knowledge regarding how to navigate costs related to type 1 diabetes until policies change in the U.S. health care system. Emerging adults with other chronic conditions such as cancer also experience greater financial stress than the general population and express concern regarding medical costs and health insurance (16,17). Successful interventions to support emerging adult cancer survivors include financial education with HCPs, allowing open discussion about the cost of care and insurance coverage (18). An additional resource for emerging adult cancer survivors is the Samfund financial toolkit (19). These publicly available online videos are engaging and provide education about navigating health insurance and the costs of care to reduce financial stress (19).

Financial distress transfers from parent to child and may remain with the child during emerging adulthood. Noticing that parents are struggling with finances may lead to emerging adults believing that managing finances is a stressful process and to feel that they are unable to reach out to parents for financial support, which creates greater financial distress (20). Efforts to integrate education from HCPs and financial education resources into diabetes care and education are lacking. Future research should focus on developing and implementing such toolkits specific for emerging adults with type 1 diabetes and on addressing policy changes.

Certain limitations were present in this study. The sample primarily consisted of individuals who had parents who were emotionally and financially supportive. We may not have captured the experience of those with low parental support. Although our sample included rural, bisexual/pansexual, and a few racially diverse participants, the majority of this sample is representative of White, suburban/urban, and heterosexual experiences. Historically, White individuals do not experience the medical racism that faces more racially and ethnically diverse individuals. Specifically, burdens, barriers, and acts of discrimination are less common for White individuals. Future research should seek to examine financial distress in racially and ethnically diverse emerging adults with type 1 diabetes.

This study contributes to the limited science on emerging adults with type 1 diabetes as it relates to financial distress. The current health care system is not set up to support emerging adults who must manage medical appointments, costly medications and supplies, pharmacies, DME companies, and complicated health insurance plans. Currently, there is a national effort to address the high cost of insulin. However, this is only one piece of a complex health care system that is inefficient and difficult for all people with diabetes to manage, and especially for emerging adults with diabetes. Future research should focus on developing and implementing financial toolkits and other resources to help emerging adults navigate the cost of living with diabetes.

This study was funded by the Sorenson Legacy Foundation.

M.L.L. has received research funding from Abbott Diabetes Care that was unrelated to this study. M.L.L. and N.A.A. have received an equipment grant from Dexcom that was unrelated to this study. J.E.B. is a consultant for WellDoc, Inc., an advisory board member for Provention Bio and Cardinal Health, and an independent contractor for Insulet Corporation and Tandem Diabetes. These conflicts are unrelated to the study. No other potential conflicts of interest relevant to this article were reported.

All of the authors wrote and reviewed/edited the manuscript. E.G.G., M.L.L., M.E.P., and N.A.A. researched the data. J.E.B. contributed to the introduction and discussion. E.G.G., M.L.L., and N.A.A. revised the manuscript. M.L.L. and N.A.A. are the guarantors of this work and, as such, had full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.