Children's Cardiomyopathy Foundation



Financial Assistance

Dealing with medical expenses, reviewing bills, and meeting payments on time can be overwhelming. Depending on the severity of the diagnosis, medical costs for cardiac care can be extremely expensive. A very sick child may incur costs related to diagnosis, treatment, specialists, hospitalization, surgical procedures, and follow-up care. Travel, food, and lodging expenses may also come up if treatment is at a medical center far away from home. Even with health insurance, some families find it difficult to meet all expenses. If you find yourself in this situation and need help paying your child's medical bills, a hospital social worker can recommend a state agency to assist eligible families. The amount of financial aid that can be awarded depends on eligibility guidelines in your state, your financial situation, your insurance policy, and the cost of cardiac care.

CCF offers the Family Assistance Program (FAP) to assist qualified families in financial need. This program was created to ensure that all children with cardiomyopathy have access to the medical services and items they need for optimal care. The fund is designed to assist low-income families with cardiomyopathy-related medical and non-medical needs when insurance and other financial resources have been exhausted.

Under this program, CCF will reimburse for treatment expenses not covered by insurance, and for displacement fees incurred during evaluation and treatment. To qualify for assistance, applicants need to meet certain income requirements and provide information about their family, financial situation and expense needs. A healthcare professional must also provide information on the child’s medical condition, impact of the disease on the child’s life, and required treatment, including explanations for any special therapy or medical equipment needed.

Family Assistance Program Application

For more information or help with CCF’s Family Assistance Program, please contact the Patient Outreach and Support Manager.

Health Insurance

If your child sees several specialists or has been hospitalized, you may receive a series of bills from different divisions within the same hospital. At times, it can be quite confusing trying to understand what has actually been settled and what is owed. Check with your health insurance provider on whether they have or will directly pay the provider and whether hospital, doctor, or lab fees were settled at a lower rate. When looking at hospital bills, you should always carefully review the itemized statements for errors. Monthly bills sent by labs or hospitals also may not reflect recent payments or lower rates, so it is a good idea to write on each bill statement any payment made by the insurance and the amount settled out of your pocket.

You may be concerned about high health insurance premiums for your child with cardiomyopathy. The easiest way to make sure you have medical coverage is to include your child in a group health plan provided by your employer. Under such a plan, all family members are covered regardless of pre-existing health problems. Once your child gets older, he/she can either be covered by a university health plan (tied to his/her college) or a future employer. In selecting health insurance plans, you need to understand the pros and cons among the different options: health maintenance organization (HMO), preferred provider organization (PPO), point of service (POS), and indemnity plans.

Factors to consider are:

  • Premiums and co-payments per medical visit
  • Need for a referral to see a specialist
  • Flexibility in negotiating claims
  • Deductible requirements and benefit payout ratio
  • Types of specialist services covered
  • Limitations on "in network" versus "out of network" doctors
  • Children with cardiomyopathy require frequent visits with a specialist, such as a pediatric cardiologist, so a POP or POS plan is preferable over a HMO. HMOs require referrals for specialist visits that may create delays in getting proper treatment. Also, out of pocket expenses for HMOs may be higher because of more restrictions on coverage.

    If insurance coverage is a concern, certain states require private insurance companies doing business within that state to offer open enrollment periods to people with preexisting conditions who may otherwise not be able to get insurance. Some states also offer comprehensive risk plans to help people with high-risk medical histories. You can check with your state government offices and state insurance commission for more information. The National Association of Insurance Commissioners (NAIC) provides links to each state insurance department's website.

    Genetic Testing

    Some insurance policies do not cover elective genetic testing. If your health care team feels that genetic testing is medically necessary due to your family history, they can send a letter of medical necessity to your health insurance provider. You can also check your state's legislation on genetic testing and health insurance on what should be legally covered. Another good source of information is the Genetic Alliance. They provide the latest information on genetic discrimination policies related to genetic testing for individuals and families with a genetic condition.