By Amy Killelea and Christine H. Monahan
For any young adult, the transition off of a parent’s health insurance coverage or the aging out of eligibility for Medicaid/CHIP can be a stressful event. Young adults are often just starting out in the working world and may not have access to jobs with robust health insurance benefits. They also are typically at the lowest end of their earning potential, with salaries that may not stretch far enough to cover comprehensive coverage—or the deductible that can go with it.
The Affordable Care Act (ACA) delayed this transition for many, requiring that health insurance plans allow parents to keep their adult kids on their plans up to the age of 26 and enabling states to extend Medicaid coverage to low-income adults. This protection for young adults is coupled with the ACA’s broader expansion of access to private insurance through robust consumer protections for plans sold to individuals, guaranteeing coverage to people with pre-existing conditions. But ongoing efforts by the current administration and Congress to make it harder and more expensive for people to get enrolled and stay enrolled in Medicaid and marketplace plans, coupled with the steady rise in premiums and deductibles for employer-sponsored insurance, will make it harder to find affordable coverage for many Americans. While some young adults may risk going uninsured during this tumultuous period, health coverage is not optional for the many young adults living with a chronic condition, including the hundreds of thousands living with diabetes. For these individuals, coverage transitions are not only stressful; they can also have life and death consequences.
A recently released set of briefs from the Center on Health Insurance Reforms (CHIR) at Georgetown University’s McCourt School of Public Policy highlight policy options states are currently pursuing to improve health insurance coverage, affordability, and access for people living with insulin-requiring diabetes in individual market plans, including marketplace plans. The reforms identified in these briefs can play an important role mitigating problems that young people with diabetes encounter during coverage transitions by reducing variability across plans and, in some instances, introducing continuity protections for prior authorization approvals. Because of states’ limited regulatory authority, however, gaps will remain, putting young adults with diabetes at risk.
For Young Adults With Diabetes, Health Insurance Is Mandatory
In 2021, there were nearly 30 million people in the United States with diagnosed diabetes (either type 1 or type 2). Of this total, the Centers for Disease Control and Prevention estimates that 352,000 children and adolescents younger than age 20 years have diabetes, including 304,000 with type 1 diabetes. These individuals require consistent access to a range of services to stay healthy, including insulin (and sometimes other medications used to regulate blood sugar), monitors to keep track of glucose levels, supplies needed for various diabetes devices to work, and both primary care providers and specialists.
The cost of this care can add up, even for people with private insurance. In 2020, privately insured individuals with diabetes spent nearly twice as much out-of-pocket on care as individuals without diabetes. Unaffordable cost sharing for diabetes services is not only a financial burden, but it can also have major implications for health outcomes, prompting people with diabetes to resort to dangerous measures to stretch their access to insulin and other necessary diabetes services.
Adolescents and young adults living with diabetes must not only navigate treatment for what is often a lifelong chronic condition, but are also confronting major life milestones that could involve moving away from home for the first time, starting school or a job, and confronting the responsibility of finding and using their own health coverage. The transition from pediatric to adult care can be a point at which young people with diabetes fall out of care. One parent of a teenager with insulin-requiring diabetes who participated in a webinar hosted by Georgetown last year expressed anxiety about his child navigating insurance coverage in the future. He wanted to make sure his child had access to comprehensive and affordable coverage after she left the family’s plan and thought that this might impact his child’s employment choices. Assessing insurance coverage options and navigating the complexity of actually using that insurance is difficult for anyone with a chronic or complex condition, especially for younger individuals navigating a lot of other life transitions.
Variation In Health Insurance Coverage Makes Transitions Harder For Young Adults With Diabetes
Choosing the wrong plan can carry heavy consequences for young adults with diabetes, and private health insurance options in the United States are anything but uniform. There is considerable variation in coverage, cost-sharing, and the “utilization management” policies that private insurance plans use to determine if a patient meets certain criteria for a particular item or service to be covered, including prior authorization. Individuals, especially young adults new to private insurance, can be overwhelmed with the dizzying array of considerations for their coverage.
Consider the following questions someone with diabetes looking at insurance coverage options may have to ask:
- Does the plan cover the type of insulin I’m on right now, or will I have to switch to a different formulation?
- Does the plan cover the type of insulin pump and glucose monitor I’m on, that I’ve been on for years, and that have worked well for me, or do I need to switch to different ones?
- If the specific insulin or diabetes device I’m currently using is covered but my plan requires my provider to prove I need one formulation over another, will my doctor be able to get the plan to approve coverage so I don’t have to switch? How long will that take?
- Will I be able to get the diabetes devices and supplies I need from a retail pharmacy, or will I have to figure out how to navigate a smaller durable medical equipment (DME) distributor network?
- What are the trade-offs if I choose a high deductible plan with a lower premium or a low deductible plan with a high premium?
- The plan I might purchase only lists coinsurance (a percentage of the total negotiated price of the service) for the insulin, devices, and specialty visits I would need. How can I tell how much that will actually cost me when I use these services?
A mid-year plan change that resets a person’s deductible contributions back to $0 can compound the financial burden. These types of scenarios can force young adults to resort to insulin rationing and other dangerous ways to respond to unaffordable care.
States Are Taking Steps That Can Make Coverage Transitions Less Risky For People With Diabetes
The variability in coverage, cost sharing, and utilization management practices across private insurance makes coverage transitions for people with diabetes more difficult. While the ACA did not include a national coverage or cost-sharing standard across all private insurance markets, it did create a far more uniform base for coverage in the individual and small group markets, including through the law’s Essential Health Benefits (EHB) coverage requirements and robust non-discrimination requirements. Subsidies for marketplace coverage (in the form of premium tax credits and cost-sharing reductions) have also made individual market coverage far more accessible for young adults, including those living with diabetes.
State policymakers are building on these federal standards to provide more robust protections where they can, including for marketplace plans and other fully insured policies that are subject to state insurance laws. States, for example, can mandate coverage for diabetes services and devices, something that nearly every state has done. However, many state diabetes coverage mandates were passed decades ago, and some states are working to update them to account for medical advances in diabetes treatment. States can also require plans that cover continuous glucose monitors (CGMs) as a pharmacy benefit, as Virginia has done, which may reduce some administrative barriers to treatment. States can also cap or eliminate cost-sharing not just for insulin, but diabetes devices and services—from lab work, diabetes education and self-management, and mental health care—that are important for people with diabetes. Colorado, the District of Columbia, and Illinois all offer examples other states can follow. Finally, many states are instituting prior authorization reforms, which can help ensure that plan coverage limitations and criteria are consistent with generally accepted standards of care like the American Diabetes Association’s Standards of Care in Diabetes. Some of these laws include requirements intended to ease transitions from one source of coverage to another, such as requiring insurers to honor prior authorization approvals made by a new enrollee’s prior plan for at least ninety days to ease the disruption during a plan change.
Federal Crosswinds
Even as states take action to ensure the plans they regulate meet the needs of individuals with diabetes, young adults who transition across coverage types that are regulated very differently—such as moving from Medicaid to employer-sponsored coverage or from a parent’s employer-sponsored coverage to the individual market—will likely continue to face significant disruption. The frequency of such transitions and related disruption is likely to increase in light of recent and expected federal policy changes that are projected to undo historic coverage gains under the ACA.
What’s more, as the current administration and Republican-controlled Congress begin to assert their own vision for health insurance regulation, they may rollback private insurance standardization and regulation, which is something that happened during the first Trump Administration. This could include a loosening of benefits requirements and cost-sharing protections in favor of a “free market” approach to health insurance that allows for a proliferation of “junk plans” that are available at cheaper prices, but do not offer robust coverage. For people with diabetes, especially young adults navigating the complexity of private insurance coverage for the first time, an array of plan options that do not offer comprehensive coverage for diabetes could create a dangerous bait and switch, where someone could inadvertently end up in a plan that does not provide coverage for the diabetes services they need. Unfortunately, young adults with diabetes will need to remain highly vigilant not only regarding their personal health, but also their insurance coverage.
Amy Killelea and Christine Monahan “Health Insurance Transitions For Young People With Diabetes Can Be Life Threatening” May 15, 2025, https://www.healthaffairs.org/content/forefront/health-insurance-transitions-young-people-diabetes-changing-coverage-can-life. Copyright © 2025 Health Affairs by Project HOPE – The People-to-People Health Foundation, Inc.
