Insurance Gaps—Bridging Troubled Waters

Pediatric kidney transplant recipients usually transition their care to the adult transplant nephrology team upon reaching the age of majority (between the ages of 18 to 23 years) (1). During the transition, the young patients often lose their health insurance coverage and this loss is one of the major reasons for nonadherence and allograft loss in this population. For many years health care coverage for young adults has been known to be insufficient, but these deficits become especially dire for the transplant recipient. In fact, young adults are the highest uninsured patient group in the United States (2); two of five young adults (aged 19 to 25 years) did not have health insurance in 2011 (3). Limited insurability is one of the greatest barriers to successful outcomes in solid organ transplantation and especially afflicts the young adult transplant recipient.

The reason young adult transplant recipients often experience a gap in their health care coverage is that insurance eligibility criteria change as a child ages. Aging-out of childhood health insurance poses risks for disruption in access to care, with impaired coverage for in- and outpatient care and post-transplant immunosuppressive medication. It is essential that the transition team be able to predict and prepare for changes in insurance eligibility in order to optimize the patient’s opportunity to continue post-transplant care and avoid lapses in the ability to pay for immunosuppressive medications, which alone can cost the uninsured patient between $10,000 and $14,000 per year (4).

Preparing for a patient’s aging-out of coverage is a daunting task due to complex state, federal, and private insurance rules (5). Although many of these have changed with the passage of the Affordable Care Act (ACA)—and clear recommendations for benefits have been made by the Committee on Child Health Financing for children from birth to age 26 (6)—the systems are still complex and fraught with state-to-state variability.

Transplant recipients are usually insured through a combination of Medicare, Medicaid, and/or private insurance policies (Figure 1). Medicare Part A covers hospital inpatient expenses, but there are deductibles and co-pays for the inpatient stay. Part B of Medicare pays for physician visits and outpatient expenses. There are monthly premiums for Part B coverage and the outpatient physician charges and laboratory work are paid at 80 percent; thus, the patient is still responsible for 20 percent of the charges in addition to the monthly premium. Often a patient needs supplemental insurance for the uncovered 20 percent. Medicare part B also covers immunosuppressive medication charges at 80 percent up to 36 months after the transplant. However, if the patient’s disability is not due to ESRD and they had Medicare coverage at the time of transplant there is no time limit on coverage for antirejection medications. Medicare pays only for antirejection medications, therefore it is important to be aware that the costs of other medications often used in conjunction with the antirejection regimen will not be covered. Yet when children reach adulthood they are no longer eligible for Medicare unless they meet the criteria for ongoing social security disability benefits. Therefore, at the same time that young adult patients transition from the pediatric to the adult clinic they often lose their Medicare coverage.

Figure 1.

Insurance coverage limits for the young adult kidney transplant recipient


As for the states, Medicaid coverage is also problematic for the transitioning patient. Currently, many state Medicaid programs do not cover adults, and most young adults who are covered through Medicaid or the Children’s Health Insurance Program lose their health insurance between the ages of 19 to 21 years because each state determines the last age of children’s services. Medicaid covers hospital, physician, and medical costs, but it is dependent upon extremely low financial income and continuing eligibility (for those aged 65 years or older being blind or permanently disabled; under 21 years, being pregnant, in a skilled nursing facility, or a parent or caretaker of a child under 21). Since Medicaid can be reevaluated every few months, it cannot be counted on to provide for long-term support in this patient population.

The loss of health care coverage has obvious devastating consequences for a young adult transplant recipient and puts them at high risk for nonadherence and loss of graft function. As of 2010, insurance plans that included dependent coverage have changed their policy in order to cover adult children until their 26th birthday. This change in the insurance mandate has led to a dramatic increase in the numbers of insured young adults and has been an enormous help for young adults whose parents have health insurance (3).

Hope for those young adults transplant recipients who cannot join their parent’s health plan will be provided by the ACA when it goes into effect in 2014, at which time they will have the opportunity to join subsidized private health plans even if their incomes are up to 400 percent of the federal poverty level (3). Yet problems will still exist for patients dependent upon Medicare due to their renal disease—although the Medicare income eligibility level has increased, the new health care provisions will not change other eligibility requirements for Medicare, such as the requirement to have worked for 10 years in Medicare-covered employment or have been a dependent of someone who has paid into Medicare (3).

Although the ACA has provided enormous help, there is no known provision in the ACA for extension of Medicare coverage for immunosuppressive drug coverage (7). This is a tremendous problem for young adults who often find it difficult to obtain a job with adequate benefits to cover the cost of their immunosuppressive medications. One solution for patients currently on Medicare is to recommend the patient for the Vocational Rehabilitation program, a return-to-work program available for any patient who has had a transplant and is eligible for Medicare. The goal is to provide the young adult with skills that allow them to acquire employment that provides insurance coverage, although there are no guarantees they will find a job. Nevertheless, this should be considered in anticipation of the transition to the adult clinic.

The ACA does not provide coverage for undocumented transplant recipients, whose access to care can be particularly problematic. Many of these young adults have resided in the United States for most of their lives as children of undocumented parents. This population of patients does not qualify for patient assistance programs, county medical services, or Medicaid because these programs require legal resident status. Some states have Medicaid programs that provide for immunosuppressive medication coverage, usually for 2 to 3 years, without proof of legal residency; however, caring for these patients often requires altruistic efforts from the medical team.

The challenges for transplant teams participating in the patient’s transition from the pediatric to adult clinic is to plan ahead for potential gaps in insurability and ensure a reliable source of immunosuppressive medications. This must be done months before the patient reaches an age where their insurability is at risk. Often the efforts required to ensure that a young patient will be able to pay for their post-transplant care means an aggressive search for patient assistance programs, insurance exceptions, health care providers willing to volunteer their time to care for the undocumented, and creative strategies in order to ensure that the “gift of life” is not squandered due to limits on insurability. Meeting this challenge requires an enormous time commitment by the transplant team, and often a dedicated financial support team, to sort through a complex morass of state, federal, and private insurer rules and regulations. Many providers will find that the time required to help this most vulnerable group of transplant recipients is not reimbursable. Ultimately, the success of the young adult with a kidney transplant relies on rigorous preparations made by the pediatric transplant team that allow successful transfer of the patient to the adult setting. Additionally, health care providers must be active in public policy discussions to promote optimal insurability for this vulnerable patient population.


[1] Ms. Oatt and Drs. Steinberg and McKay are affiliated with the Balboa Nephrology Medical Group in San Diego, CA. Dr. McKay is also affiliated with the Scripps Research Institute in La Jolla, CA.


1.Blum RW, et al. Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health 1993; 14:570–576.

2.Collins SR, et al. Realizing health reform’s potential: how the Affordable Care Act is helping young adults stay covered. Issue Brief (Commonw Fund) 2011; 5:1–26.

3.Collins SR, et al. Tracking trends in health system performance: young, uninsured, and in debt: why young adults lack health insurance and how the Affordable Care Act is helping: findings from the Commonwealth Fund Health Insurance Tracking Survey of Young Adults, 2011. Issue Brief (Commonw Fund) 2012; 14:1–24.

4.Kasiske BL, et al. Payment for immunosuppression after organ transplantation. American Society of Transplantation. JAMA 2000; 283:2445–2450.

5.White PH. Access to health care: health insurance considerations for young adults with special health care needs/disabilities. Pediatrics 2002; 110:1328–1335.

6.Committee On Child Health Financing. Scope of health care benefits for children from birth through age 26. Pediatrics 2012; 129:185–189.

7.Cohen DJ, Murphy B. Drug coverage for transplantation turns into political football: big business trumps patients. Clin J Am Soc Nephrol 2010; 5:746–747.

September 2012 (Vol. 4, Number 9)