When your child is receiving frequent and intensive medical care, the financial burden of managing the disease can be overwhelming. Medical costs for cardiac care can be expensive when medical appointments, testing, specialists, hospitalization, surgical procedures, medications, and follow-up care are added together. If treatment is at a medical center far away from home, displacement expenses such as travel, food, and lodging add to the total cost.

Medical Billing

If your child sees several specialists or was hospitalized, you may receive several bills from different departments of the same hospital. You will receive two documents for each medical service: a medical bill and explanation of benefits (EOB) detailing what was paid to your provider and what is your balance for payment.

It is important to review each bill and explanation of benefits carefully and match by hospital, doctor, and service date. You may organize using folders or a labeled accordion folder with a separate “Payment Required” folder or pocket for outstanding payments. To help you keep track of medical bills and expenses, there are resources such as Building Your Care Notebook from the National Resource Center for Patient/Family-Centered Medical Home and healthcare payment portals or apps through your provider.

When your family is facing insurance policy limits and service restrictions, speak to the hospital social worker about assistance programs that you may be eligible for. Your social worker should be able to guide you based on your family's financial situation, insurance coverage, and the cost of medical care.

Family Assistance Program

Families seeking financial assistance for medical and displacement costs related to their child’s cardiomyopathy treatment can refer to CCF’s Financial Resources page. Several organizations are listed to assist with medical and non-medical needs not covered by insurance.