Impact of Kidney Disease
Insurance Coverage

                            THE IMPACT OF PEDIATRIC KIDNEY DISEASE

The incidence of end-stage renal disease (ESRD) in patients age 0 to 19 years in the United States is 15 per million population, according to the 2002 USRDS Annual Data Report. The primary etiologies vary with age, but structural anomalies predominate. Data in the most recent report from the Chronic Renal Insufficiency arm of the North American Pediatric Renal Transplant Cooperative Study (NAPRTCS) indicate about two thirds of the patients on the registry had some type of structural anomaly. Numerous metabolic derangements occur in chronic kidney disease (CKD) and significantly impact on the overall well-being of affected children. Of the negative effects of pediatric renal disease, growth impairment is the best documented and studied, but there is very little systematic information about the magnitude of other developmental problems. In fact, there have been no large-scale prospective studies of pediatric chronic kidney disease.

Short stature is one of the more commonly recognized effects of CKD, first recognized over a century ago. The height deficits are greatest for younger patients and it has been previously documented that the risk for growth failure is highest in patients developing CKD at birth or early in infancy. The degree of renal failure, and particularly a GFR < 25 ml/min/1.73m2, has been touted as critical to poor growth. Recent data also link poor growth to increased morbidity and mortality.

When CKD develops during the neonatal period or in early infancy, there are significant problems with neurocognitive development. Some studies suggest an incidence of severe neurodevelopmental delay as high as 60% - 85% in this subpopulation. Growth in head circumference is uniformly subnormal. Gross motor delay, along with global developmental retardation and a lack of maturation on electroencephalography are common. Myoclonic seizures and cerebellar dysfunction have also been described in infants. However, there is virtually no information on the impact of a decrease in renal function that develops later in childhood. Overall, the impact of renal disease and uremia on neurocognitive development has been the subject of little systematic evaluation. Both the nature and magnitude of impaired neurocognitive development in pediatric patients with renal failure is unknown. Renal failure, however commonly affects both the central and peripheral nervous systems. Chronic uremic encephalopathy is associated with problems in learning and memory. These symptoms are believed to result from altered metabolic states in the CNS with ionic changes and possibly impaired synaptic function. Renal failure may also be accompanied by neuropathy and involvement of large diameter axons. There is substantial uncertainty whether earlier institution of renal replacement therapy offers advantages for the child's development.

The incidence of hypertension in children with CKD is reported at 38-78%. As a general rule, hyper-tension is infrequent in congenital renal disease, but is almost universal in primary glomerular disease and renal injury caused by systemic disease. In addition, uremic cardiomyopathy can be seen in pediatric patients with advanced CKD or ESRD, and may be associated with congestive heart failure. A recent report indicates that hyperhomocysteinemia is found in children with CRF, but it is unclear whether treatment of hyperhomocysteinemia in children decreases the risk for future atherosclerosis. Hyperhomocysteinemia has been identified as a risk factor for development of atherosclerosis in adults with CRF. Cardiovascular disease is a major problem in the adult nephrology patient population, but the incidence and types of cardiovascular disease present in children is unknown. For patients who have kidney failure starting in childhood, the incidence of risk factors for cardiovascular disease needs to be clearly delineated.


Most private insurance plans through a parent(s)' employment cover children up to age 23 (check your plan handbook for exact age) if they are full time college students. However, they usually have a provision regarding children who become disabled before the age of majority and that is specified in your Plan Book. In most cases if you provide medical documentation of your child's disability, check what the Plan criteria are, your child is covered as long as the child remains disabled and your dependant.

One tragic case comes to mind. I will call the young man Billy. Billy was born with his bladder and other organs outside his abdomen, had many surgeries and eventually a kidney transplant. His parents were responsible people but failed to consult an attorney when it was evident that he would be disabled for life. They felt this was a family matter to be handled by the family. He is now in his 30s, unable to work and no longer covered on his parents' policy. Not only did they have to purchase a separate private policy but they did not work with Social Security and have him, prior to the age of 20, declared a Disabled Adult Child (DAC) which would have provided Social Security Dependant Benefits, Medicare and allowed him to use other State services. He never paid into the Social Security system and his parents never implemented their rights to cover their dependent. His parents are now retired, fearful as to what will happen to him. They would love to sell their home and simplify their lives but they are still responsible for their son. See the section on planning for your child's future and do so.


Medicaid is not just for the very poor. If your family has extraordinarily high medical expenses because of a child's ongoing illness that child might qualify under the Medically Needy Category. Each state has different eligibility criteria. Contact your local Department of Social Services.

There is a member of our Atypical HUS family, who prior to her son's illness, worked full time. Now, due to his illness and the need to care for him, she is no longer able to work; she is a full time caregiver. The family does not meet Medicaid income levels but due to high medical expenses for this one child, Medicaid covers the child, the SCHIPS Program covers his sibling. The parents, the father works full time, are covered by a plan they were able to purchase for themselves.

When one family member becomes ill plans that once worked no longer are workable. Families must put together various combinations of healthcare options. Consult with a social worker, financial counselor, or an attorney specializing in planning for disabled dependants. Do not depend on your Department of Social Services to tell you everything that you are eligible for. Many offices are understaffed and those there have tremendous case loads. It often takes many months for applications to be processed. When you do apply for benefits make sure you have multiple copies of birth certificates for all family members, marriage certificates, income documentation, residence verification, copies of bank statements, list of liquid assets, insurance policies of all types, rent/mortgage verification, and utility bills. If you mail documents use certified mail. Keep an ongoing record of who you speak to, date and time, what was said and what documents were provided.


When most people think of Medicare they think the elderly and those disabled individuals who meet certain eligibility criteria. Think again. Children of ANY AGE who have end stage renal disease - kidney failure and require dialysis or a kidney transplant can be covered under the Medicare ESRD Program. Regulations that apply to adults apply to children. As long as a parent has paid into the Social Security System, has worked 40 current quarters and would themselves be eligible for SS if meeting the medical criteria than their dependant of any age is also eligible. Once it is apparent that the child has end stage disease have the social worker contact Social Security or call yourself and arrange a telephone interview or go to your local Social Security Office and apply. You will need a form called a 2728 which provides medical evidence of ESRD. Your doctor or dialysis center must provide this to you and the Renal Network in which you live. This documents to Social Security and Medicare your child's eligibility.


The State Children's Health Insurance Program or SCHIP Title XXI of the Social Security Act (PL 105-33, August 5, 1997)

OVERVIEW: The State Children's Health Insurance Program (SCHIP) gives grants to states to provide health insurance coverage to uninsured children up to 200% of the federal poverty level (FPL). States may provide this coverage by expanding Medicaid or by expanding or creating a state children's health insurance program. Funds were available October 1, 1997. However, states did not have to participate, and they could also choose to wait up to three years to implement the program without losing any funds. (Review the text of Title XXI)

The legislation set eligibility criteria. States could decide to cover all of those children or to target coverage to a narrower group of children. The eligibility criteria are to cover uninsured children who are: not eligible for Medicaid, under age 19; and at or below 200% of the federal poverty level (FPL) which changes every year based on the cost of living index. If your state had expanded Medicaid eligibility above 150% for any age group, the income eligibility level is 50% above the current Medicaid eligibility levels.

States must maintain the Medicaid eligibility they had in place on June 1, 1997 in order to receive the grants. They also had to maintain the same level of state spending on child health programs that was expended in 1996.

The legislation allowed states to choose the way they spend their money. They could expand Medicaid; create or expand a state program; or a combination of both. States could also spend up to 10% of the funds to provide coverage through a community-based health delivery system or by purchasing family coverage.

If a state chooses to implement a Medicaid expansion, they must offer the newly eligible the same Medicaid benefits package.

If a state chooses to implement a state children's health insurance program, it could choose the benefits package from among five basic options.

Blue Cross/Blue Shield preferred provider option offered to federal employee offered under the FEHBP, State employee health plan, HMO with the largest insured commercial, non-Medicaid enrollment in the state (To obtain a copy, contact the office of your state's Insurance Commissioner.) or coverage that is the actuarial equivalent to one of the above (1 through 3, or another benefit package approved by the Secretary of Health and Human Services.

Because of their existing state programs, New York, Pennsylvania and Florida have been exempted from the above benefits requirements and can continue to offer the health insurance package in place in their children's health insurance programs at the time of enactment.

States are allowed to impose premiums, deductibles, or fees for some services and for some groups. However, no co-payments are allowed for pediatric preventive care, including immunizations, at any income level.

For children whose family incomes are above 150% of poverty states can impose premiums, deductibles or other cost-sharing on a sliding scale not to exceed 5% of the family's income.

The Center for Medicare and Medicaid Services will administer the program.

States must submit a plan to the Secretary of Health and Human Services in order to receive funds. The plan must include: the number of uninsured children, what the state is already doing, eligibility requirements, benefits package offered, how it will be coordinated with Medicaid, and outreach to be conducted. However, if the state submits an amendment to restrict eligibility or benefits, the state must ensure that it has allowed prior public notice of the change.

For further information, please e-mail us at, or call us at 847/434-7799. Due to the complex nature of legislative issues, we request that you include your name, e-mail address, mailing address, phone number, and/or fax number in your e-mail correspondence, so that we may contact you for more information if necessary.
2003 - American Academy of Pediatrics

This is an abbreviated version of this information; contact your local Department of Social Service in your county for state specific information.

Internet Resources for Special Children

Child Health Toolbox