A baby with hemophilia visiting the doctor with his mom

Figuring Out Healthcare Costs for Your Child

Severe hemophilia is one of the most expensive medical conditions to treat
Author: David Linney

For parents of a child newly diagnosed with a bleeding disorder, medical costs and insurance coverage instantly become big concerns because of the high cost of clotting factor.

Severe hemophilia is one of the most expensive medical conditions, averaging $200,000 yearly. Annual costs for moderate hemophilia and severe von Willebrand disease are lower but still significant, ranging from $10,000 to $100,000 a year on average. Total costs for each diagnosis can be higher if there are complications. However, costs for newborns and very young children will usually be only a small portion of these average costs.

Where your child will receive treatment for his bleeding disorder depends on the treatment plan determined by your child’s physician. For the first couple of years, treatment sites may include the emergency room, which is often affiliated with the hemophilia treatment center (HTC); the HTC infusion clinic; a doctor’s office; and your home, with a homecare nurse. Clotting factor may be billed as part of a hospital bill or separately from a specialty pharmacy that distributes it.

If your child has health insurance through an individual or family plan or an employer family plan, coverage will vary from policy to policy. The most common medical services your child may need are:

  • Emergency room visits
  • Hospitalization
  • Doctor visits
  • Outpatient lab work and X-rays
  • Drugs
  • Clotting factor concentrates

It is important to understand your benefits coverage for these services. Review the printed insurance plan summary from your insurance company or employer, and call your insurance company or visit its Web site. Your HTC staff can often verify coverage for you. In addition, the National Hemophilia Foundation’s information resource center, HANDI, can help explain basic coverage (but not your individual insurance plan) and provide you with resources.

[Steps for Living: Insurance Basics]

Project Out-of-Pocket Costs

Understanding your child’s projected medical service needs and estimating the highest amount your insurance will not cover—your maximum out-of-pocket cost—will help you with financial planning. Out-of-pocket costs include:

Deductible: the dollar amount that the policyholder is liable to pay (often on an annual basis) before insurance will provide coverage.

Co-insurance: the percentage of costs paid by insurance (for example, 80%) and the percentage of costs that the policyholder is liable for (for example, 20%), often after a deductible is met.

Co-payment: the dollar amount charged for each medical service, such as an inpatient hospitalization, a doctor or physical therapy visit, or a prescription. 

Co-Insurance Limit: the maximum annual out-of-pocket dollar limit that a policyholder is liable to pay for co-insurance costs (for example, 20% up to $2,000).

Out-of-Pocket Limit: the maximum annual out-of-pocket costs for the deductible and co-insurance limit.

Coverage can be affected by which medical providers and pharmacies you use. Insurance plans contract with providers to be “in network.” If you use out-of-network providers, the treatment may not be covered or may be only partially covered. Coverage can also be affected by insurance plans that require authorizations, which are special approvals to provide coverage for certain medical services or medications.

Healthcare Reform

Under new healthcare legislation, by September 22, 2011, no insurance plan will have a lifetime limit (the amount an insurance plan will pay in benefits for an individual during the lifetime of a policy). By January 1, 2014, no insurance plan will have an annual limit on benefits.

For parents of a child covered under Medicaid, the coverage rate for medical and pharmacy services is usually very high. Many state Medicaid plans may require small out-of-pocket payments to providers for each medical or drug service received. Medicaid has no lifetime limits. Medical and pharmacy providers must be Medicaid approved for you to receive care and service. (Almost all hospitals are Medicaid approved.) Medicaid authorizations may be required for specific medical services or medications.

Understanding your insurance coverage while you’re trying to comprehend your child’s new diagnosis can be overwhelming, but by becoming familiar with what services and products are covered, you can plan for your family’s medical costs.