What types of insurance are available?

Indemnity or "fee-for-service"

This is the type of insurance that used to be about the only insurance option in the United States. This is the type of insurance that pays medical care providers on a fee-for-service basis. This means that, in general, a service is provided, and a fee is charged. The insurance company pays for the service (to either the patient or the provider of the service ) as the expense is incurred. These plans generally allow the patient to pick their own health care provider. There can be a basic policy plus a major medical policy designed to help pay for care when there are very serious health problems, such as cancer. Comprehensive policies include both basic coverage plus a major medical component.

All of these policies have a deductible (the fixed dollar amount that must be paid by the insured person before the insurer starts to make payments), and a lifetime benefit maximum (the total amount the insurer will pay during the lifetime of each covered person using benefits). After the stated deductible is met, the insurance company will pay a percentage (75%-80% is common) of the costs or claims submitted to them, until a certain amount (cap) is reached. Reimbursement is then made at the rate of 100% of "usual and customary" charges. Since the insurance company decides what is usual and customary, there often are uncovered costs that families must pay. Some policies have a limit on the total costs that must be paid by the beneficiary in a calendar year. It is always helpful if the insurance company will "waive" or not force the insured person to pay the charges above the "usual and customary “charges.

Managed care plans

There are many different types of managed health care plans. Most of the arrangements have lower costs than "fee for service" insurance and copayments that must be paid at the time of service. A copayment is a fixed dollar amount that the insured person is required to pay when a medical service is received. These amounts can differ between managed care companies and between services within the company. There is usually no need to file claim forms. These plans generally provide coverage for preventive health care as well as for serious illnesses. Individuals may belong to:

• Health maintenance organization (HMO): a health care system that provides medical services to its members, usually in return for a fixed, prepaid fee.

• Preferred provider plan (PPO): a plan where coverage is provided to members through a network of selected health care providers like hospitals and doctors. Often the patient may go outside of the network to another provider, but it costs more.

• Exclusive provider organization (EPO): a more limited type of plan where employees must use providers from the network of doctors and hospitals to receive coverage; there is no coverage from an out-of-network provider unless it is an emergency situation.

• Point of service (POS) plan: a point of service plan combines an HMO model with a PPO model. This type of plan works like an HMO with in-network services. For services that are given outside of the network, payment is made similar to a"fee for service" type method.

• Individual practice association (IPA): a type of health provider organization made up of a group of doctors who practice independently, maintaining their own office, but remain part of a group in order to sell their services in a contract to HMOs or other groups.

Some plans employ their own doctors and run their own hospitals. Others require that members use a primary care provider who coordinates all of the patient's care and serves as a "gatekeeper" for care from specialists. A gatekeeper is usually a primary care doctor who is responsible for the overall medical care of his or her patient. This doctor organizes and gives permission for medical treatments, laboratory studies, specialty referrals and hospitalizations. For example, if a patient needs to see an expert like a lung specialist, under this plan, he or she would need a referral from the primary care doctor before being"allowed" to see the specialist (or for the consult to be paid for by the insurance company).

Under some plans, members must use the services of certain providers and institutions that have contracts with the plan only. Some plans do not require prior approval or pre-authorization, but do require that members choose providers from a particular list or "network" of providers. When patients choose to go outside the network for care or "out of network" they may have to pay an extra fee, or they may not be paid for the service at all. Many different types of institutions and agencies sponsor managed care plans, not just insurance companies. They include employers, hospitals, labor unions, consumer groups, the government, and others.

Hospital indemnity policies

There are some policies that pay a fixed amount for each day a person is hospitalized. Such policies can be used as the insured wishes, but are often used for the other expenses that families face when one member is ill. There is usually a limit on the total number of hospital inpatient days that are covered in a calendar year.

State Sponsored Children's Health Insurance Programs

State sponsored children's health insurance programs are special state-supported programs that pay for medical services for children. Most states offer some type of free or low cost health insurance for eligible children in the United States. Usually, your child must be under the age of 18 and your family must earn less than $34,100 per year for a family of four. The program covers doctor visits, medicines, hospitalizations, dental care, eye care and medical equipment and is funded by state tax dollars. People usually cannot be enrolled in Medicaid and be eligible for state sponsored health insurance programs.

Catastrophic major medical policies

These are policies that cover major medical care needs. The policies usually have a very high deductible and fairly low premiums. They are useful when a person's primary medical policy has a limited lifetime limit and are appealing to people with chronic illnesses: Medicaid, Medicare, and CHAMPUS (Civilian Health and Medical Programs of the Uniformed Services) These public programs will be described later.

Insurance or managed care can be so confusing. Can you break it down for me?

The following are suggestions to help you and your family better understand your medical coverage:

• Locate all insurance information referring to the current medical problem.

• Read and review carefully any booklets explaining the plan under which your child is covered.

• Request written information on benefits if you do not have it.

• Talk with your employee benefits person at your job if you have questions or do not understand any of the terms in the printed materials.

• Make a list of any questions on benefits, deductibles, and coverage.

• Get answers directly from the insurer or managed care group that provides coverage.

• Be sure you understand your tasks in making sure that services are covered.

• Identify one contact person (if possible) in customer service with whom you can discuss claims and request services who will become familiar with your situation. This person may be a case manager.

• Meet with a hospital or clinic financial counselor or person from the patient accounts office to learn about billing procedures.

• Discuss any concerns about your insurance with your team social worker. He or she can help you understand how the system works and where to get help.

• Ask for help from a trusted friend if you feel overwhelmed in dealing with these matters.

• Develop a system for keeping records. For example, you may keep records according to each visit or under each health provider or under each week, whatever makes most sense to you.

I am really confused. My child's medical care is covered by more than one insurance company. Help!

Children covered under each parent's group health insurance plans have one plan considered a primary insurance, while the other insurance is secondary. The primary insurance pays the cost of claims first. The secondary plan pays remaining costs not covered by the primary plan, if it is a covered benefit. When a child or adolescent is covered by the group policies of each parent, the primary insurance usually is the one belonging to the parent whose birthday comes earlier in the calendar year. There are exceptions to this and families need to check the details of each policy. When two policies are providing coverage, record keeping becomes more complicated.

What do I do if my child is not listed as a beneficiary (person who receives the benefit or insurance payment) under a parent's insurance?

Sometimes only one parent has group insurance coverage through an employer and family members are not covered because the premiums cost too much. Simply talk this out with the team social worker who should have information on financial resources that will provide help. If possible, the parent should talk with their employer or benefits person at work about how to enroll their child. Some plans have annual or semi-annual "open enrollment" provisions that permit coverage despite current medical problems. If the plan has a waiting period for adding dependents with pre-existing conditions, such as a child with a cancer diagnosis, families generally still find it worthwhile to enroll the child. Treatment often continues for an extended period of time and can be quite expensive. Some states have laws limiting the the period of time they will allow before letting you add a child with an illness. Insurance issues can be very complicated and families often need help not only in finding answers, but also in even knowing the right questions to ask.

How can families know what cancer treatments should be covered by insurance?

This is an important question if a family is trying to decide among several insurance or managed care options. Some families have an opportunity to assess coverage during open enrollment periods. The Association of Community Cancer Centers (ACCC) has a Web site that has access to information that can give you help with those types of questions (see their contact information in the Additional Resources section).

Will insurance or managed care pay for a bone marrow transplant?

This question can only be answered on an individual basis. You can get a general answer regarding coverage for a specific diagnosis from the case manager or claims worker of the insurance company. Although bone marrow transplant is standard treatment for certain kinds of cancer, some policies exclude transplant as a benefit for other diagnoses. If this is the case when transplant is recommended, the hospital financial counselor or team social worker can assist with resource information and advocate to get financial help. The National Marrow Donor Program (NMDP) provides detailed information on this topic (see Additional Resources).

Where can families get help with insurance-related questions?

Questions about insurance coverage often come up during treatment when families are making decisions about their child's care. Here are some suggestions for dealing with insurance related questions:

• Speak with the insurer's or managed care provider's customer service department.

• Ask the team social worker for help.

• Talk with a hospital financial counselor.

• Talk with the consumer advocacy office of the government agency that oversees your insurance plan.

• Learn about the laws regarding insurance that protect the public. The Agency for Healthcare Research and Quality has a section entitled "Checkup on Health Insurance Choices" that may provide you with helpful information as a health care consumer. You can access this at www.ahrq.gov.

What government agencies control private and public insurance plans?

The private group plans purchased from insurance carriers by employers as a benefit for employees are under the commission or department of insurance in each state.

Self-funded plans that employers or unions create rather than purchase are run by the U.S. Department of Labor's Office of Pension and Welfare Benefits.

Managed care plans are regulated by several state and federal agencies. Your state commission or department of insurance can provide specific information for an individual plan in question.

Medicaid is controlled by the state department of social services. Medicare is run by the U.S. Social Security Administration. CHAMPUS is under the U.S. Department of Veteran Affairs.

What can we do when work does not offer us group medical insurance?

Families that do not have medical insurance through an employer can explore several options:

• Look into whether you and your family can get group insurance through an organization in which you have, or can arrange, membership, such as: an alumni association, fraternal organization, farmers' cooperative group, labor union, professional organization, or group such as the American Automobile Association (AAA).

• Find out whether your state has a Comprehensive Health Insurance Plan or "high-risk pool" through which you may purchase insurance for your child. A high-risk pool is a state-created, non-profit association that offers health insurance coverage to people with pre-existing illnesses. Federal funding was made available in 2002 to help states fund these plans. Benefits, premiums, and waiting periods will vary, but most states with such pools have rules that control what can be offered. Your state department of insurance or insurance commission can provide information.

• Decide whether one parent should look for a job with a large company that offers medical insurance or managed care with open enrollment provisions. Open enrollment guarantees coverage despite current or past medical history or status. Rules about waiting periods vary from state to state.

• Consider purchasing individual insurance to cover your child. Although this is costly, rates have become a bit more competitive with private insurance companies who see this as a business opportunity.

• See whether your child might be eligible for Medicaid or any other benefits.

What is Medicaid?

Medicaid is another government program that covers the cost of medical care. To receive Medicaid, your income and assets must be below a certain level. These levels vary from state to state. Not all health providers take Medicaid. Some examples of eligible groups for Medicaid include the following: low income families with children, Supplemental Security Income (SSI) recipients, infants born to Medicaid-eligible pregnant women or children under age 6, and pregnant women whose income is below the family poverty level.

Medicare beneficiaries who have low income and limited resources may receive help paying for their out-of-pocket medical expenses from their state Medicaid program.

Medicaid pays only a percentage of the direct cost of medical care to hospitals and doctors, but families are not billed for the remainder. Children determined to be disabled under the Americans with Disabilities Act are usually eligible for Medicaid. Having insurance coverage does not make a person ineligible for Medicaid. Some children who are not eligible for Medicaid at the time of diagnosis become eligible after the family acquires medical debt that affects their income.

In some situations, having Medicaid eligibility can benefit a child or family, even if it is not used to pay direct medical costs. For example, most medical centers make their own determination of a family's ability to pay medical bills. A family with an income low enough to qualify for Medicaid may receive special consideration that could result in a discounted hospital bill. Medicaid funds may also be used in some states to help pay the cost of transportation to hospitals and clinics and for food and lodging if a parent has to travel out of their own community for treatment or follow-up care.

The team social worker can provide more information on applying for Medicaid, or application can be made by contacting county social services or health departments. These numbers can be found in your local blue pages.

Can Medicare help with medical care costs for children?

Medicare is a federal program funded through the Social Security system. It provides health insurance for persons who meet certain criteria. Young people with cancer may receive Medicare benefits after collecting Social Security benefits under the Supplemental Security Income program for two years. You can get more information from the nearest Social Security Administration office (check the local telephone book), or by talking with the team social worker.

What is CHAMPUS?

CHAMPUS stands for the Civilian Health and Medical Programs of the Uniformed Services. This federal program provides approved inpatient or outpatient medical care for dependents of active-duty, retired, or deceased members of the military. This program has recently been set up to work more like a managed care system and has been renamed TRICARE.

What other public assistance programs might help pay for my child's medical care?

Children's Special Health Services (CSHS) is a state-administered program providing financial support of health care for children, usually 21 years of age and younger, with certain chronic conditions, including cancer. It is financed by both state and federal funds. In some states these programs may have different names. For more information about whether these programs can help, consult with a hospital or clinic financial counselor or talk with the team social worker.

Hill-Burton Funds are available from the federal government to enable certain nonprofit medical centers to provide free or low-cost care to some patients (see Additional Resources).

Can children who are not U.S. citizens receive Medicaid or Children's Special Health Services?

There are situations in which children who are not citizens of the United States may receive Medicaid or CSHS to pay for some of their treatment. All questions regarding Medicaid eligibility rules and regulations should be discussed with county Medicaid specialists. CSHS coverage should be discussed with the hospital or clinic financial counselor. The services of an interpreter can usually be arranged if speaking or understanding English is a problem.

Will children whose care is paid by Medicaid or Children's Special Health Services receive the same treatment as children covered by third party payers?

Children and teenagers should receive the same care and same state-of-the-art treatment and other services available regardless of the payment source for their treatment. If parents have any questions or concerns about this, they should speak directly with the pediatric oncologist directing the care of their child or with another member of the health care team.

What sources are available to help with treatment costs if neither insurance nor public assistance is available?

No child will be denied treatment in a nonprofit hospital if a family is unable to pay. If insurance coverage cannot be arranged and if a child cannot be covered under Medicaid or another program, a family may have to consider other options as a way to meet some of the costs of treatment. These options could include: programs through the Salvation Army, church related organizations such as Lutheran social services, Jewish social services, Catholic charities, or the Lions clubs. The Patient Advocate Foundation may also be helpful. Try also:

Talking with hospital or clinic financial counselors or the patient accounts office to see what special plans can be made for payment of bills over an extended time period.

Seeking financial assistance from special funds or from organizations such as the National Children's Cancer Society (NCCS). The NCCS provides direct assistance with medical care and other costs of a child's cancer. Other organizations such as the American Cancer Society, The Leukemia & Lymphoma Society, or other groups may be able to help with specific costs in some parts of the country or identify sources of support. Some drug companies provide help with drug costs for patients in financial need. In addition, special medical center and community funds often exist to help families with the cost of medical care bills The team social worker should have information on these and other potential resources.

Fundraising to secure help with medical bills and related expenses: Families generally require help from relatives, friends, church members, or community groups to carry out successful fundraising efforts. Parents should be involved in giving permission for others to raise funds for their child and in line with their wishes. Caring for their ill child and managing the needs of family and work usually requires all their time and energy. In any fundraising effort, parents should consider their child's and their own need for privacy.

Often it is best to establish a simple trust fund into which contributions can be placed. A trustee is then named to authorize spending from the fund. This way parents can avoid even a hint of any improper use of the fund. Parents may find it most helpful to check with an accountant, attorney, or bank officer about setting up such a trust. Ask whether money in a trust fund will affect eligibility for public assistance programs.

Exploring the possibility of free treatment through the Pediatric Branch of the National Cancer Institute or St. Jude's Children's Research Hospital in Memphis, Tennessee. Patients accepted for treatment at these institutions must meet specific criteria. Speak with your child's oncologist if you want more information.

What records should be kept related to insurance and medical care costs?

It can easily become overwhelming for a family to keep track of the bills, letters, claim forms, and other papers that begin flowing into a household after a child is diagnosed with cancer. Keeping accurate records of medical bills, insurance claims and payments will help families manage their money better and keep their stress levels lower. Some families already have a system for handling their finances and records and only need to expand their system and create new files. Others may have to develop strategies for handling the volume of paperwork. Record-keeping is also important for those families who wish to take advantage of the deductions available in filing itemized tax returns. The Internal Revenue Service can provide information and free publications regarding tax exemptions for cancer treatment expenses (see Additional Resources).

Records should be kept of the following:

• medical bills from all health care providers
• claims filed
• reimbursements (payments from insurance companies) received and explanations of benefits
• dates, names, and outcomes of contacts made with insurers and others
• non-reimbursed or outstanding medical and related costs
• meals and lodging expenses
• travel (including gas and parking)
• long-distance telephone calls related to medical or other types of care, including psychosocial care
• admissions, clinic visits, lab work, diagnostic tests, procedures, treatments
• drugs given and prescriptions ordered

What are some tips for record-keeping?

Here are suggestions for record-keeping that families have found helpful:

• Decide who will be the family record-keeper or how the task will be shared.

• Seek the help of a relative or friend, if necessary. This may be especially important for single parents.

• Set up a file system in a file cabinet, drawer, box or loose-leaf notebook.

• Check all bills and explanations of benefits paid for accuracy.

• Review bills promptly after receiving them.

• Pay bills by check if possible so that you will have a record of payment.

• Save and file all bills, payment receipts, canceled checks.

• Keep a daily log of events and expenses; a calendar with space for writing is useful.

• Maintain a list of team members and all other contact persons with their phone and fax numbers.

• Find out what is tax deductible. (see Additional Resources for the IRS number)

What can be done if there is a problem paying a particular medical bill or paying it on time?

Many families have periods when they find it difficult to pay their bills on time. Most hospitals and agencies are willing to discuss and help resolve these problems. To maintain a good credit rating, it is important to pay attention to notices that state that a bill will soon be turned over to a collection agency. Families can:

• Explain the problem to the hospital or clinic financial counselor or doctor's office secretary.

• Work out a payment delay or an extended payment plan.

• Talk with the team social worker about sources of temporary help.

• Consider letting relatives or friends help out with money on a temporary basis.

What can be done if an insurer denies a claim or refuses to cover a prescribed service?

It is not unusual for particular claims to be denied or for insurers to say they will not cover a test, procedure, or service that doctors order. If this occurs it is important to have a working relationship with a customer service representative or case manager with whom the situation can be discussed. A first step should be to resubmit the claim, sent with a copy of the denial letter. It may be necessary for the child's doctor to explain or justify what has been done or is being requested. Sometimes the test or service will need to be "coded" differently. If questioning or challenging the denial in these ways is not successful, then families may need to:

• Postpone payment until the matter is resolved.

• Resubmit the claim a third time and request a review.

• Ask to speak with a supervisor who may have authority to reverse a decision.

• Formally appeal the denial in writing, explaining why you think the claim should be paid. Team members may be able to help with this.

• Request a written response.

• Keep all originals of correspondence in your possession; the team may be able to help you make copies if necessary.

• Keep a record of dates, names, and conversations you have about the denial.

• Seek help from the consumer services division of your state insurance department or commission .

• Ask for help from the Candlelighter's Childhood Cancer Foundation Ombudsman Program

• Be persistent in trying to resolve the matter.

• Consider legal action.

What can be done to keep health insurance coverage if a parent loses or leaves a job?

There are federal laws which provide for the possibility of continuing medical insurance coverage when a parent changes or loses a job, or loses benefits as a result of a reduction in the hours worked. There are no laws that guarantee a family the right to adequate or affordable medical insurance coverage.

COBRA (The Consolidated Omnibus Budget and Reconciliation Act of 1986) provides the right to temporarily continue health insurance coverage at group rates, although these rates are usually higher than those paid when under employment. This coverage is available when coverage is lost due to certain specific events or"qualifying events," such as stopping work, reducing work hours, divorce or legal separation, the covered person becoming entitled to Medicare or the death of the employee.

COBRA allows people to continue coverage of their group medical insurance for a period of up to 18 months or 29 months if a beneficiary is considered disabled. (This determination of disability is made by the Social Security Administration). COBRA does not apply if a person is fired for gross misconduct.

COBRA is not provided automatically but must be elected by the former employee within 60 days of stopping employment. The employer must also notify an employee of its availability, usually around 2 weeks after the qualifyiing event occurs. Continuing insurance coverage is available if the premium is paid and until the individual becomes covered under another group policy. Premiums cannot exceed 102% of the cost of the plan for similarly situated employees who do not have a "qualifying event." COBRA is administered by the U.S. Department of Labor and more detailed information about its coverage can be obtained from them (see Additional Resources). Families are often concerned about their ability to continue payment of the premium. If this is the case, you should discuss the matter with the team social worker who may have suggestions about how to assist with these costs.

The Health Insurance Portability and Accountability Act of 1996 (HIPAA): This bill has several clauses that can possibly benefit parents of children or adolescents with cancer:

• It enables a parent who has had group medical insurance for at least 12 months to change jobs and be guaranteed other coverage with a new employer who also offers group insurance. In this situation there is no waiting period and a dependent cannot be denied coverage because of a preexisting health problem.

• If a parent was previously uninsured and takes a job with an employer offering group insurance, the waiting period for preexisting conditions cannot be longer than 12months.

• The plan requires insurers to renew coverage to all employers and individuals when premiums are paid.

• The act also guarantees the availability of group insurance coverage for employers of small businesses of 2 to 50 people.

For more information about HIPAA contact your state department or commission of insurance.

Is there other legislation that affects insurance coverage?

There are 2 other major federal laws that address insurance issues. They are:

The Family and Medical Leave Act of 1993 (FMLA)

This act requires employers with at least 50 employees to provide up to 12 weeks of unpaid, job-protected leave to eligible employees for certain family and medical reasons. Having a child with cancer is certainly a justifiable reason. Employees are eligible if they have worked for a covered employer for at least 1250 hours in the previous 12 months. For the time period of the FMLA leave, the employer must maintain the employee's medical insurance coverage under any company group health plan.

Your child's pediatric oncologist and the team social worker can help provide the necessary paperwork for your employer. This act is regulated by the U.S. Department of Labor's Wage and Hour Division. They can provide additional information. Check the telephone directory in your area under U.S. Government, Department of Labor. (See Additional Resources).

The Americans with Disabilities Act of 1990 (ADA)

This act offers protection against discrimination in the workplace to anyone who has, or has had, certain disabilities, including any diagnosis of cancer. Parents of dependent children with cancer are also protected under this law. It requires private employers who employ 15 or more people, labor unions, employment agencies, and government agencies to treat employees equally, including the benefits offered them, without regard to their disabling condition or medical history. It also does not allow employers to screen out potential employees who have children with disabilities.

This act, along with the Family and Medical Leave Act, makes it easier for a parent to change jobs and move from one group insurance arrangement to another. This law is administered by the U.S. Equal Employment Opportunity Commission (EEOC). They can answer questions and provide more information on a special telephone line (see Additional Resources). The American Cancer Society also has information for cancer patients on the Americans with Disabilities Act (see Additional Resources).

Last Medical Review: 10/26/2005
Last Revised: 07/09/2008