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Figuring Out What Insurance Covers

The health care system can be extremely complicated and a source of great stress for families. Working with the insurance provider can help families understand their medical plan, what it covers, and where care is available.

Review insurance plan documents carefully to understand benefits coverage, network providers and potential out-of-pocket costs. These documents include:

  • Summary Plan Descriptions (SPD)
  • Evidence of Coverage (EOC)
  • Summary of Benefits and Coverage (SBC) documents

Insurance companies and employers (if an employer-based health plan) are required to provide a summary of insurance coverage. Request a copy if you do not have it.

Top down view of a person sitting at a table filling out health insurance paperwork.

Speaking to the Care Team

To prepare for conversations with the insurance company, the care team can provide information about the patient’s treatment plan. Getting clear answers to questions will minimize unexpected costs, manage stress, and help families make more informed decisions.

  • Ask questions early – It is important to ask questions from the beginning to obtain a better picture of what to expect and the associated costs.
  • Keep an open dialogue – Families should regularly confirm the treatment plan with the care team. Regular review will reduce the chance of unexpected costs.
  • Write everything down – Documenting as much information as possible will help when reviewing charges.

At the time of diagnosis

Key questions to ask the care team to better understand recommended tests and procedures include:

  • What tests and procedures does my child need?
  • Where will these tests and procedures occur?
  • Which providers will perform these tests and procedures?
  • What type of cancer does the child have?

During treatment

The insurance company will have questions such as:

  • What is the treatment plan and time frame?
  • How regularly will these treatments occur?
  • Where will treatments occur?
  • Which providers will perform them?
  • Will there be a need for at-home care once treatment is over?

Drugs and medication

The insurance company may ask questions about the cancer medicines prescribed. Ask the care team:

  • Which chemotherapy or targeted therapy drugs are in the plan?
  • What drugs will manage side effects?
  • Will there be a need for pain medication?
  • How regularly will these drugs be given and for how long?
  • Are there generic versions or brand name drugs within the same drug class?

At-home care

During treatment, the child may need at-home care from a parent or a specialized caregiver. Insurance plans may cover some of these costs. A clear understanding of specific care and anticipated timeframe will help insurers provide answers.

Ask the care team about home requirements to provide accurate information to the insurance company.

  • What kind of care will my child need once he or she leaves the hospital?
  • Will my child require a specialized caregiver?
  • What kind of equipment will I need to care for my child at home?
  • How long will my child require specialized at-home care?

Questions for the Insurance Company

Once a treatment care plan is in place, contact the insurance company to understand the services covered and their costs. Ask the insurance company to assign an individual case manager or patient advocate to help answer questions. The case manager can guide families through the insurance plan rules, coverage limitations, and potential out-of-pocket costs. Questions to ask the insurer include:

  • Where and from whom can my child receive care?
    • Most insurance companies have comprehensive lists of in-network providers that are accessible online. Confirm whether your hospital is in-network.
    • Sometimes a hospital is in-network but a surgeon or specialist who provides care in the facility is not. Confirm each provider.
  • Is a referral required from our primary care provider?
    • Some insurance plans require that a primary care physician provide a referral before receiving care from specialists. 
    • Other plans may require approval from the insurance company for certain types of care.
  • Is pre-approval from the insurance company required before seeing specific providers and/or specialists?
    • The family should secure the necessary approval before beginning care. The insurance company may bill more for the care if appropriate approvals were not obtained. In some cases, the insurance company may not cover any of the costs.
  • Are my child’s tests covered?
    • A plan may cover all tests and diagnostic care recommended by the care team. Tests may be at a specific hospital or care center for coverage by insurance.
    • The care team will likely not know what facilities a specific plan covers, so confirm these details with the insurance company prior to receiving care.
  • Are the drugs prescribed covered?
    • New cancer drugs are emerging at a rapid pace. The insurance plan may or may not cover the specific drugs the care team feels are best for your child.
  • Is formal documentation needed from the family?
    • The insurer may specify reports or forms that the family must provide.

If the insurer denies coverage for any portion of the care plan, consider these next steps:

  • Discuss alternatives – Ask the care team if there is another option that the insurance plan does cover.
  • Appeal the decision – Request a review by the insurance company to change its decision and provide coverage. It may require an appeal letter or form, along with additional medical information. You have a right to an independent medical review (appeal) if the preauthorization or claim is initially denied by the for the appeal process. Insurance representatives can guide you through the required steps of the appeal and review process.
  • Inquire about charity care – Ask the hospital, provider, or drug company if there are any programs that may provide care at a reduced or no cost.


Reviewed: June 2018