Sticker Shock: Transitioning Teens With Type 1 Diabetes Under Medicaid to Adult Care

Jessica Sparks Lilley, MD


December 13, 2018

As a pediatric endocrinologist, I shepherd patients who are living with diabetes through the many changes that life brings. My clinic schedule is filled with toddlers with hypoglycemic unawareness, tweens who don't want to appear different to their friends, and teens who are busy playing three different sports.

I was unprepared to manage a high school senior who was being graduated out of his insurance coverage—and the insulin he needs to survive.

When my patients become graduating high school seniors, I counsel them through the transition to college and help them choose an adult endocrinologist when the time is right. Recently, however, I found myself completely unprepared to manage a high school senior who was being graduated out of his insurance coverage—and the insulin he needs to survive.

The majority of children in my state are insured by Medicaid, and when they celebrate their 19th birthday, they become especially vulnerable to dangerous gaps in care for chronic illnesses.

A Life-Altering Diagnosis

Chronic illness in children is heartrending regardless of the circumstance. My stomach sinks each time I receive a call about a child with newly diagnosed type 1 diabetes (T1D).

Certainly, diabetes doesn't define the person who carries that diagnosis. We know of Olympic athletes, rock stars, researchers, and a Supreme Court justice who have T1D and are thriving. Knowing this, I rush into the examination room with optimism and encouragement, but I also know that the child's life will never be the same despite our greatest advances in diabetes care.

Every bite eaten will have to be counted and covered with insulin. The risk for complications associated with suboptimal glycemic control looms large. Normal childhood illnesses can result in hospital stays, and I am increasingly aware that the entire family's finances will be affected by the diagnosis, adding a layer of significant stress that often goes unaddressed.

Furthermore, the relationship I will forge with the patient and family over the coming months and years will not last forever. The child will eventually become an adult and require the services of an adult endocrinologist—a transfer of care that is more treacherous than I once imagined.

Lack of Public Understanding

As a trainee who had always had medical insurance coverage, I didn't understand that some patients missed blood glucose checks or extended pump site changes beyond the recommended 3 days for reasons other than poor adherence to recommended treatment.

I was protected from some of these considerations; none of my continuity patients transitioned to adult care under my watch. With the advent of the Affordable Care Act, young adults could stay on their parents' insurance plans well beyond the purview of a pediatric specialist.

Families who can afford insurance coverage must still spend the equivalent of a car payment on monthly diabetes supplies in addition to expensive premiums.

I am now navigating solo practice in Mississippi, my home state. It is also the poorest state in the country. We often find ourselves making national headlines not for our artists, authors, or musicians but for our poverty, poor health, and politicians.

One exchange between a worried mother of an 8-year-old girl with T1D and state representative Jeffrey Guice clarified the landscape of my new practice soon after my return to the Magnolia State.

The mother, Nicole Nichols, wrote to each state representative seeking support finding a durable medical supplier who would accept Mississippi Medicaid. Representative Guice fired off an email from his smartphone in response: "I am sorry for your problem. Have you thought about buying the supplies with money that you earn?"

The statewide backlash from the diabetes community was immediate and deserved. The media coverage that followed revealed that many people in our electorate remain as unaware of the realities of living with diabetes as this uninformed representative, who later apologized.

A plurality, including many of our elected officials, believe that T1D can be controlled with diet alone. Most people do not know that medical expenditures for someone living with T1D average $16,752 annually.[1]

Most mothers cannot buy diabetes supplies with "money that [they] earn." This is especially true for young adults from households that qualify for Medicaid (133% of the federal poverty level or below) or the Children's Health Insurance Program (209% or below).

Aging Out of Medicaid

Education is desperately needed. Widespread ignorance about diabetes care and the financial burden of diabetes plagues our country. Families who can afford insurance coverage must still spend the equivalent of a car payment on monthly diabetes supplies in addition to expensive premiums. Even when young adults are covered under their parents' insurance until age 26, catastrophes still occur.

One by one, my patients are aging out of Medicaid with no practical alternative awaiting them. Some are still in high school when their 19th birthday arrives, especially those who have had frequent diabetes-related absences and had to repeat grades as a result.

The best treatments for my patients will prove beyond their reach without insurance coverage, no matter how hard they work. Just as they had no control over their diabetes diagnoses, they had no control over the financial situation they were born into, and that leaves us all feeling helpless.

Expecting a child from a family with no financial safety net to step directly out of the protection of insurance at age 19 with this expensive illness seems unfathomable—even immoral or criminal. My patients are embarrassed to broach the subject with me and are unsure where to turn for help.

When Staying Alive Is Too Costly

When I first started practicing, I found myself unprepared to help keep my patients alive. Sure, I could calculate their insulin doses and manage their diabetes care to help them live a normal, healthy life. But could I help them get the insulin they require? How soon should I start the conversation so that I can help them plan appropriately?

I began to poll my peers about how they are dealing with the obstacles in getting treatment for their uninsured young adult patients who cannot successfully transition to an adult endocrinologist or afford insulin.

"There are patient assistance programs for that," replied a trusted friend who now works for a pharmaceutical company. "Why not try a Federally Qualified Health Center or free clinic?" one colleague suggested. Another reminded me, "You can have them buy generic NPH and regular insulin over the counter, and ReliOn test strips are only $9 for a pack of 50."

Each of these options present their own problems. Patient assistance programs only cover families with incomes that are within 250%-300% of the federal poverty level, leaving hardworking middle-class patients exposed to the entirety of their insulin bills.

Twenty-five percent of people living with diabetes have admitted to rationing insulin because of cost.

The entire household income is considered, including survivor benefits of patients who have lost parents and teen siblings' paychecks from their part-time job at the grocery store. The application process is complicated and opaque, involves considerable effort, and requires computer access.

Federally Qualified Health Centers in Mississippi are not easily accessed by everyone who needs their care (and their 340B insulin pricing program). After receiving years of low-cost healthcare on Medicaid, the sticker shock of the sliding-scale fees is considerable, especially for patients who live many miles from such clinics and have to factor in time off from work from hourly wage jobs and transportation costs.

Over-the-counter insulins, though much more affordable than newer analogue and basal insulins, are still cost-prohibitive to many families, and they are less flexible than the longer-acting basal insulins and rapid-acting prandial insulins that are the standard of care.

Given these barriers to accessing the programs meant to help them and the complications of navigating these systems, my patients are suffering. Some stop calling or scheduling appointments after receiving their termination letters from Medicaid, terrified of being billed for even talking to me despite our office never charging for phone calls.

One family repeatedly applied for disability for their daughter in hopes of getting some sort of insurance coverage after exhausting all other options; they were, not surprisingly, denied. This young woman may eventually qualify for disability if her health deteriorates from preventable complications, but her compliance with medical therapy will be considered in the decision-making process—and compliance requires continuity and affordable medication.

Another young man rations his insulin and test strips, and is frequently admitted to the hospital in diabetic ketoacidosis. His poor health and frequent absences make it difficult for him to maintain steady employment. And he's not alone: Twenty-five percent of people living with diabetes have admitted to rationing insulin because of cost.

What Can We Do?

I pride myself on knowing my patients and their families well. I know their pets' names, how many siblings they have, and what sports teams they follow. Now, I also quiz them on their vocational interests or future career plans out of more than just mere curiosity. With insulin costs having tripled since 2002 in the United States,[2] it matters that they can identify a job with benefits to provide for their ongoing medical needs.

Transition issues should be discussed early and often. Career counseling is as pertinent to diabetes management as encouraging annual eye exams, and will probably prove more important to mortality and morbidity for our low-income patients if gaps in insurance coverage lead to missed insulin doses and blood sugar checks.

Fields that allow steady work, flexibility for medical visits and sick days, and pharmacy benefits must be strongly considered. We can familiarize our families with how to consider insurance policies to navigate the world of deductibles and out-of-pocket maximums.

Resources exist to support our pediatric patients as they cross the bridge to adult care, but...the bridge won't build itself.

Patient assistance programs exist through the major companies that manufacture insulin, though with limits and restrictions. We can help provide the needed forms and even Internet access to help complete the applications. Identifying adult endocrinologists who accept various insurance plans or cash-pay patients in advance will allow for smoother transitions.

Detailed insulin plans that can be printed and taken to Federally Qualified Health Centers and free clinics will allow for proper care regardless of the clinician's expertise in T1D management. Finally, emergency plans for over-the-counter NPH and regular or premixed 70/30 insulin dosing should be clarified.

Every family living with T1D needs to understand the risk for preexisting-condition restrictions and lifetime caps in insurance policies and engage with patient advocacy groups who protect such families from discrimination and financial ruin.

Crossing the Bridge

I admit that I don't know how to fix our fragmented and complicated US healthcare system, but I must engage with the problems it presents. We do everything we can in our clinic to continue to provide professional medical care for our patients, but at some point, transition to adult endocrinology is necessary.

I encourage my patients and their future healthcare providers to call me for help, and I ensure that records are transferred appropriately. Families meet for intensive sessions with our certified diabetes educator to review and refresh self-care skills and meet with our social worker to discuss their future plans. We ensure that the patient fills all prescriptions and diabetes supplies while still eligible for coverage.

In our state, we have a dedicated patient support group—the Diabetes Foundation of Mississippi—that works closely with people navigating high costs of insulin and gaps in coverage. Many states have American Diabetes Association chapters that provide similar support. The Juvenile Diabetes Research Foundation has a fantastic primer on how to choose an insurance plan.

The key to successful transition is to identify the problems and tackle them head-on. Resources exist to support our pediatric patients as they cross the bridge to adult care, but I have learned from experience that the bridge won't build itself, and I can't cross it for them. I must do my part to educate, empower, and encourage my patients to cross safely to the other side.


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