Struggling with Diabetes in 2025? How to Manage Without Adequate Health Insurance and Rising Insulin Costs

Imagine facing a chronic illness like diabetes that demands daily medication to survive, only to find your health insurance inadequate or nonexistent, cutting off your access to life-saving insulin. This harsh reality affects countless people with diabetes (PWDs) across the United States today.

Since 2012, insulin prices have soared dramatically, while insurance plans increasingly impose higher deductibles, leaving many PWDs uninsured or underinsured—a situation that jeopardizes their very lives.

How are individuals coping with this ongoing crisis, and what solutions are emerging to support them?

Insulin Rationing: A Dangerous Reality

Take Sa’Ra Skipper from Indiana, living with type 1 diabetes (T1D). After exhausting every option to afford insulin, including relying on a pediatric endocrinologist’s samples, she was forced to drop out of college and take a job solely for health insurance benefits.

To stretch her insulin supply, Sa’Ra resorted to eating foods requiring minimal insulin, often sacrificing nutrition for affordability. Eventually, she began rationing insulin—using just enough to survive, a medically perilous practice.

“When rationing, every thought revolves around giving yourself the bare minimum insulin to stay alive, not a drop more,” Sa’Ra explained.

This scarcity left her drained, irritable, and unable to focus—a low point in her two decades of managing T1D. Many around her mistook her symptoms for mere fatigue, while her mother remained unaware, unable to help financially.

Sa’Ra’s story is far from unique. Daily, people across age groups share on social media their desperation after running out of insulin with nowhere else to turn.

Similarly, Danielle Hutchinson from North Carolina, diagnosed with T1D 12 years ago, chose a more expensive insurance plan to secure better coverage. Yet, when COVID-19 disrupted her contracting work, she fell behind on premiums and lost coverage, accruing $12,000 in medical debt.

Desperate, Danielle confided, “It would be cheaper for everyone if I just got COVID-19 and died.” Her struggle underscores the devastating impact of inaccessible insulin.

Stories like Sa’Ra’s and Danielle’s drive advocacy efforts to demand change. As Sa’Ra emphasizes, “No one should have to ration insulin or sacrifice basic needs just to survive. The problem is real, and urgent action is needed.”

The Roots of the Crisis

The Affordable Care Act (ACA) of 2010 expanded access to insurance and prohibited denial based on pre-existing conditions, benefiting PWDs significantly. Yet, insulin affordability was not a pressing issue then.

By 2012, insulin prices skyrocketed, partly due to Pharmacy Benefit Managers (PBMs) who negotiate drug prices but often contribute to higher costs for patients. Simultaneously, insurance plans introduced higher deductibles, including pharmacy costs, shifting more financial burden onto patients.

By 2018, reports of insulin rationing and related deaths surged, prompting caravans to Canada for affordable insulin and legislative hearings. While some state-level progress has occurred, the problem persists nationally.

Increased public awareness and advocacy have intensified pressure on policymakers, yet the path to comprehensive reform remains complex.

Immediate Support and Resources

Christel Marchand Aprigliano, Chief Advocacy Officer at Beyond Type 1 (BT1) and a long-time T1D advocate, highlights that while systemic change is crucial, immediate assistance is vital.

BT1’s getinsulin.org serves as a centralized platform connecting PWDs to savings programs, food assistance, and medication support. It guides users through tailored options based on insulin type, insurance status, and location, without collecting personal data.

Though not permanent fixes, these programs provide essential relief while broader reforms are pursued.

Understanding Pharmacy Benefit Managers (PBMs)

PBMs emerged to manage the complexity of drug claims between insurers and manufacturers but now contribute to inflated drug prices through rebate negotiations and opaque practices.

As Christel notes, “PBMs represent a well-intentioned system gone awry.” While reform efforts are underway, unraveling these entrenched issues will take time.

Role of Advocacy Organizations

JDRF has actively represented the diabetes community in policy discussions, including efforts to improve insulin affordability and insurance coverage. Campbell Hutton, JDRF’s vice president of regulatory and health policy, emphasizes that managing diabetes proactively is more cost-effective than treating complications.

JDRF continues to collaborate with government officials to develop impactful programs and policies.

Community-Driven Support

Grassroots initiatives have flourished, with PWDs supporting one another financially via platforms like Venmo and exchanging insulin brands when insurance coverage forces non-medical switching.

Emergency 30-day insulin supplies are available through manufacturers and pharmacies for true crises, but long-term access requires navigating official assistance programs.

Living Through the Struggle, Advocating for Change

Today, Sa’Ra maintains her insulin supply through employment but hopes to return to school to study medicine and law, aiming to advocate for systemic change.

Danielle, though burdened by debt, has found some relief through assistance programs and encourages others to explore savings options like GoodRx.

Both urge patients to remain calm, seek help, and advocate for healthcare reform, emphasizing that collective action is essential to transform the system.

Essential Resources for 2024

• GetInsulin.org: Comprehensive resource for insulin savings and assistance programs.
• Affordable Insulin Project: Advocacy and support for lowering insulin costs.
• GoodRx: Find discounted prescription prices.
• JDRF Health Insurance Guide: Information on insurance and diabetes management.
• Lilly Cares: Eli Lilly’s patient assistance program.
• NovoCare: Novo Nordisk’s patient support site.
• Sanofi Patient Connection: Help with prescription costs.
• NIDDK Financial Help for Diabetes Care: Government resources for managing diabetes costs.

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