Chronic Costs: Real Stories and Resources for Managing Diabetes Expenses

During my undergraduate career, I had the privilege of volunteering at a federally qualified health center, supporting individuals who were often medically underserved, underprivileged, and underinsured. Although my role was mostly limited to sorting items in the food pantry or sterilizing equipment for our clinics, I cherished the moments of genuine connection with the individuals in our care. One afternoon, while folding laundry with an older gentleman, he noticed my insulin pump and began sharing how diabetes had shaped his own life. As he opened up about the early financial challenges he’d faced—like having to choose between medical care and housing—I could see how these sacrifices had significantly worn him down over the years, both physically and mentally.

While the cost of managing diabetes is often thought of as a burden for low-income populations, the truth is that it affects individuals across the socioeconomic spectrum. According to the American Diabetes Association (ADA), the average annual healthcare cost for someone living with diabetes is $19,736—more than twice that of someone without the condition. Spending such significant amounts on medical care can be daunting even for those with sufficient means. These challenges are even more pronounced for those in a financial gray area, earning too much to qualify for federal aid but not enough to comfortably absorb the costs.

In 2020, the out-of-pocket cost for a 30-day supply of insulin ranged from $387 to $705—a significant burden, especially when considering that diabetes management extends far beyond the cost of insulin alone. Essential items like ketone test strips, insulin pen needles, and pump supplies also come with steep price tags, making it difficult for many to afford, justify, or prioritize the full spectrum of care they need. As a college student, I saw these challenges manifest in disconcerting ways among my peers. I often found myself in conversations within diabetes social and advocacy groups—spaces that many don’t realize can be lifelines for young adults on campus. It wasn’t unusual to see classmates urgently requesting diabetes supplies in our messaging groups, and this experience opened my eyes to how widespread the struggle to obtain care truly is.

You might wonder, “How is it possible that so many people are left with so few choices?” While recent reforms such as the $35 monthly cap for Medicare beneficiaries have helped some, they don’t apply to everyone. Thus, a significant portion of people are left vulnerable to exorbitant co-pays, deductibles, and other out-of-pocket expenses. If you’re feeling the pressure of managing diabetes on a budget, it’s important to know that there are resources out there that can help alleviate some of the burden.

What To Do In A Crisis?
In the event of an emergency, knowing where to turn is imperative. For those in immediate crisis, your healthcare team is often the best place to start. Many endocrinologists, and even some primary care physicians, keep samples of insulin, test strips, and continuous glucose monitoring sensors specifically to support patients facing dire circumstances. If you’ve recently lost insurance, are experiencing financial hardship, or are facing delays in getting your prescriptions, these samples can offer temporary relief. They also give you more time to explore sustainable solutions, ideally with the support of your provider.

Community health centers (CHCs), like the one where I volunteered, are also incredible resources for making healthcare accessible to everyone. These centers often use a sliding fee scale so patients can get the care they need regardless of their income or ability to pay. Many CHCs also employ community health workers (CHWs) who can work directly with you to navigate and access essential services. CHWs meet you where you are—both literally and figuratively. They’re trained to assist with a variety of needs, such as finding affordable healthcare, applying for financial assistance, or addressing housing and food insecurity. For example, a CHW might help you apply for Medicaid, accompany you to a doctor’s appointment, or assist with forms for discounted medications. They make these processes feel less overwhelming, providing stability and support when it’s needed most.

Medicaid expansion programs can also offer tremendous relief. In Michigan, for instance, there’s a program called Children’s Special Health Care Services that covers healthcare for residents under 26 with chronic illnesses. Other states have similar programs, like Minnesota’s Insulin Safety Net Program, which helps people with diabetes access life-saving medications when they need them, whether during an emergency or for ongoing support. Whether you reach out to these programs independently or with the help of a CHW, they can make a significant difference in removing barriers to care and connecting you to the services you need.

Patient Assistance Programs (PAPs) can also help remedy the high costs of insulin. Sponsored by pharmaceutical companies, nonprofit organizations, or state governments, these programs provide free or discounted insulin and other diabetes-related supplies to those who qualify. The application process may require submitting documentation of income, insurance status, and medical needs, but the potential benefits are substantial. Major insulin manufacturers like Eli Lilly, Novo Nordisk, and Sanofi all have PAPs that can significantly reduce the cost of insulin for eligible patients. If this still feels daunting, organizations like RxAssist and NeedyMeds offer online tools to help patients locate and apply for these programs.

If there’s one thing I’ve learned from being part of the diabetes community, it’s that we are incredibly resilient people. From late-night text chains exchanging extra supplies to lending support during difficult times, these connections have shown me that we are not defined by the challenges we face, but by how we rise to meet them. While no single solution can fully address the financial and logistical hurdles of managing diabetes, combining resources can make a meaningful difference. If you’re navigating these challenges, know that help is out there and a community is ready to support you. You’re not alone in this journey, and with the right assistance, managing diabetes can become less of a burden and more of a collective effort toward living well.