As a cancer patient, you may have financial resources available to you, including health insurance, government programs, disability benefits, aid from voluntary organizations, and living benefits from life insurance policies, including viaticals (viaticals are explained later on in this document). If you have no medical insurance, there are other options.

This article covers the following topics:

• private health insurance
• government-funded insurance plans
• options if you are uninsured
• financial issues
• list of states with health insurance risk pools
• additional resources

Private health insurance

Health insurance coverage helps with the medical costs that come with the diagnosis and treatment of an illness. It is important to have and keep good medical coverage. This can help you avoid financial hardship. Many patients have private insurance through employee group plans or individual plans. It is important to have accurate information and a good understanding of your financial situation and insurance coverage. It is very important to pay your monthly insurance premiums.

Types of health insurance plans

There are many types of health insurance plans. Here are very brief descriptions of the different plans:

Fee-for-service plans

If you have this type of health insurance, you can choose any doctor, change doctors any time, and go to any hospital anywhere in the United States. You pay a monthly fee, called a premium. Every year, you also have to pay a certain amount of money (known as the deductible) before your insurance will start to pay your medical expenses. After you have met your deductible, your insurance will pay a set percentage of the bill. You may have to fill out forms and send them to your insurer to get reimbursed (paid back) for medical costs you have already paid. Sometimes the doctor's office will do this for you, and then send you a bill for whatever your insurance didn't cover. You also need to keep receipts for drugs and other medical costs. You are responsible for keeping track of your own medical expenses.

Health Maintenance Organizations (HMO)

The HMO will usually cover most expenses after a minimal co-payment. HMOs may limit your choice of providers to those within their approved provider network.

Point-of-Service Plans (POS)

A point of-service plan is a type of HMO. The primary care doctors in a POS plan usually make referrals to other doctors in the plan.

If your doctor refers you to a doctor out of the network, the plan will still pay all or most of the bill. But if you choose a doctor outside the network and the service is covered by the plan, you will have to pay co-insurance. Co-insurance is the amount you must pay in addition to what the insurance company will pay. It is usually a certain percent of the cost, for example the insurance company may pay 80% of the bill and you have to pay the other 20%.

Preferred Provider Organization (PPO)

The preferred provider organization is a combination of traditional fee-for-service and an HMO. Like an HMO, there are only a certain number of doctors and hospitals you can use. When you use those doctors (sometimes called "preferred" providers, other times called "network" providers), most of your medical bills are covered. When you don’t use these providers, the PPO makes you pay more of the bill out of your own pocket.

Other things to know about health insurance

Catastrophic illness clauses

There are many expenses associated with the management of most cancers. Some insurance plans provide for additional coverage under a "catastrophic illness" clause. 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 lifetime limit and are appealing to people with chronic illnesses. Check to see if your plan contains such coverage.

Pre-existing condition exclusions

If you are a cancer patient and join a new health insurance plan, you may face a "pre-existing condition exclusion period." A pre-existing condition is a health problem that you had before you joined your medical plan. With a pre-existing condition exclusion period, your plan will make you wait before they pay the costs of the pre-existing medical problem. The wait may be as long as a year for insurance you get through an employer.

There are certain employer-based insurance situations in which Federal law prevents the employer from imposing an exclusion period for a pre-existing condition. You may be exempt from this exclusion period if you have had health insurance with a previous employer and have not been without health insurance coverage for more than 63 days. Some states require an employer-based insurance company to cover your pre-existing condition even if you were without insurance for a bit more than 63 days. You can call the US Department of Labor at 1-866-444-EBSA to find out more about your specific situation. (See the section, "The Health Insurance Portability and Accountability Act of 1996" for more information.)

However, if you are purchasing a plan that is not group coverage (including high risk pools), the pre-existing condition exclusion period is set by the state and can be many years or even unlimited. If you are getting a plan through someone other than an employer, the insurance provider can also impose an elimination rider that would keep that disease, body part, or body system from ever being covered by that policy.

Case managers and financial assistance planners

Hospitals, clinics, and doctors' offices usually have someone who can help you fill out claims for insurance coverage or reimbursement. A case manager or a financial assistance planner may be able to help guide you through what can often be a complicated process.

Look carefully at heatlh insurance options

Look closely and compare plans if you are trying to decide among several insurance or managed care options. Sometimes there is an opportunity to look at and consider different types of coverage during open enrollment periods (the time periods when you are able to make changes in your coverage, usually once a year).

Hospital indemnity policies

There are some health insurance policies that pay a fixed amount for each day a person is hospitalized. There is usually a limit on the total number of hospital inpatient days that are covered in a calendar year. The money received from this type of policy can be used as the insured wishes, and it is often used for the other expenses that families face when one member is ill.

How to manage your health insurance

Do not allow your health insurance to expire. Pay premiums in full and on time. It is often difficult and expensive to get new insurance.

• Become familiar with your individual insurance plan and its coverage. Get a copy of your plan's summary description (SPD), which tells you how the plan works, what benefits it provides, and how the benefits may be obtained or the process for filing your claim. If you think you might need more insurance, ask your insurance carrier whether it is available.

• Submit claims for all medical expenses even when you are not sure if they are covered.

• Keep accurate and complete records of claims submitted, pending, and paid.

• Keep copies of all paperwork related to your claims, such as letters of medical necessity, explanations of benefits, bills, receipts, requests for sick leave, and correspondence with insurance companies.

• Get a caseworker, a hospital financial counselor, or a social worker to help you if your finances are limited. Often, companies or hospitals can work with you to make acceptable payment arrangements if you let them know about your situation.

• Submit your bills as you receive them. If you become overwhelmed with bills, get help. Contact local support organizations, such as your American Cancer Society or your state's government agencies, for extra help.

How to get answers to insurance-related questions

Questions about insurance coverage often come up during treatment. Here are some suggestions for dealing with insurance related questions:

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

• Ask the cancer care 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 "Questions and Answers About Health Insurance" that may give you helpful information as a health care consumer. You can find this at www.ahrq.gov/consumer/insuranceqa/.

Keeping records of insurance and medical care costs

It can easily become overwhelming to keep track of the bills, letters, claim forms, and other papers that begin flowing into a household after a cancer diagnosis. 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 plans for handling the volume of paperwork. Record-keeping is also important for those who wish to take advantage of the deductions available in filing itemized tax returns. The Internal Revenue Service can give you information and free publications regarding tax exemptions for cancer treatment expenses (see "Additional Resources").

Keep records of the following:

• medical bills from all health care providers

• claims filed

• reimbursements (payments from insurance companies) received and explanations of benefits (EOBs)

• 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 filled

Here are some helpful suggestions for record-keeping:

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

• Get the help of a relative or friend, if needed. This may be especially important for people who are single.

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

• Check all bills and explanations of benefits paid for to be sure they are correct.

• Review bills soon 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, and canceled checks (if copies of canceled checks are not possible, talk to your bank or credit union about how to get copies of canceled checks if needed.)

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

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

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

When you have problems paying a medical bill

Many people go through times when they find it hard to pay their bills on time. Most hospitals and agencies are willing to discuss and help resolve these problems. To keep 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 do the following:

• 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 short-term help.

• Consider letting relatives or friends help out with money on a short-term basis.

Handling a claim denial or refusal to cover a prescribed service

It is not unusual for some claims to be denied or for insurers to say they will not cover a test, procedure, or service that doctors order. If this happens it is important to have a working relationship with a customer service representative or case manager with whom you can talk about the situation. A first step should be to re-submit the claim with a copy of the denial letter. You may need to have the doctor explain or justify what has been done or is being requested. Sometimes the test or service only will need to be "coded" differently. If questioning or challenging the denial in these ways is not successful, then you may need to:

• Put off payment until the matter is resolved.

• Re-submit 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. Your health care team members may be able to help with this.

• Request a written response.

• Keep the originals of all letters 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.

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

• Do not back down when trying to resolve the matter.

• Consider legal action.

You can learn more about the appeals process from the Kaiser Family Foundation through "A Consumer’s Guide to Handling Disputes With Your Employer or Private Health Plan" which can be found on their Web site at www.kff.org/consumerguide. The Patient Advocate Foundation also has "Your Guide to the Appeals Process" which can be found on their Web site at www.patientadvocate.org/resources.php?p=13.

Federal laws protecting continuation of employer-sponsored health insurance coverage

There are federal laws which give people the chance to continue employer-sponsored medical insurance coverage when a person experiences a "qualifying event" (defined under "COBRA" below). There are no laws that guarantee the right to adequate or affordable medical insurance coverage.

COBRA (Consolidated Omnibus Budget and Reconciliation Act of 1986)

COBRA gives people the right to temporarily continue health insurance coverage at the employer's group rates, but these rates are usually much higher than those you paid when employed. This coverage is available when coverage is lost due to certain "qualifying events," such as stopping work, reducing work hours, divorce or legal separation, the covered person becoming entitled to Medicare, a dependent child no longer considered to be dependent according to the terms of the plan, or the death of the employee.

COBRA allows people to continue coverage of their group medical insurance for a certain period of time, depending on the qualifying event. For example:

• Up to 18 months of coverage is allowed if you stop working or reduce the number of hours you work.

• 29 months of coverage is possible if a beneficiary is considered disabled. (This determination of disability is made by the Social Security Administration.)

• 36 months of coverage is available in cases of divorce or legal separation, the covered person becoming entitled to Medicare, death of the employee, or when a dependent child is no longer considered to be a dependent.

If a person is fired for gross misconduct, he or she will not be eligible for COBRA.

COBRA is not provided automatically but must be chosen by the former employee within 60 days of getting the written COBRA notice; it is not always within 60 days of when you stopped working. The employer must notify an employee that COBRA is available, usually around 2 weeks after the qualifying event occurs. But there is also a deadline for notifying the plan administrator of the qualifying event, which varies according to the qualifying event. And whose responsibility it is to notify the plan administrator also depends on the qualifying event. In some cases it may be the beneficiary's responsibility. Contact the employer's human resources person, your insurance company, or check your policy to find out the details of what must be done and who should do it in your situation.

Continuing insurance coverage is available if the premium is paid and until the person becomes covered under another group policy. Premiums cannot be above 102% of the cost of the plan for employees in similar situations who have not had a "qualifying event." COBRA coverage may be lost if you go above the limits of the coverage, your former employer stops offering all health plan coverage, or you become entitled to Medicare after you choose COBRA.

COBRA is administered by the U.S. Department of Labor and they can give you more detailed information about its coverage (see "Additional Resources"). Families often have concerns about being able to continue paying the premium for COBRA. If this is the case, you should talk to your team social worker who may have suggestions about how to help with these costs.

For more information ask for the American Cancer Society document, What is COBRA?

The Health Insurance Portability and Accountability Act of 1996 (HIPAA)

This bill has many clauses that might benefit cancer patients:

• It allows a person who has had health insurance for at least 12 months with no long loss of coverage (usually more than 63 days) to change jobs and be guaranteed other coverage with a new employer who also offers group insurance. In this situation there may be no waiting period and the pre-existing condition exclusion may be reduced or not applied. Also, the employee and his or her dependents cannot be denied coverage because of a pre-existing health problem. (See previous section, "Pre-Existing Condition Exclusions.")

• If a cancer patient were uninsured before and takes a job with an employer offering group insurance, the pre-existing condition exclusion period cannot be longer than 12 months.

• The plan requires insurers to renew coverage for 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 ask for the American Cancer Society document, What is HIPAA? or contact your state department or commission of insurance.

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. 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. This act is regulated by the U.S. Department of Labor's Wage and Hour Division. They can give you more information. Check the telephone directory in your area under U.S. Government, Department of Labor. (See the "Additional Resources" section, below.)

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 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 give you more information on a special telephone line (see "Additional Resources"). You can also get more information in the American Cancer Society document, Family and Medical Leave Act (FMLA).

Who regulates different kinds of insurance plans?

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

Self-funded plans (or self-insured plans) that employers or unions create rather than purchase are overseen by the U.S. Department of Labor's Employee Benefits Security Administration.

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.

Medigap policies are regulated by federal agencies, as well as some state laws. Their sale is restricted to people who are covered with Medicare (see section "Medicare.")

Medicaid is controlled by the state department of social services. Medicare is run by the U.S. Social Security Administration. TRICARE (originally CHAMPUS) is overseen by the U.S. Department of Defense.

Government-funded insurance plans

Medicare

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 blue pages of your local telephone book), or by talking with the team social worker. Medicare is also federal health insurance for people who meet any of the following criteria:

• those who are at least 65 years of age

• those who have been permanently disabled and are receiving disability benefits from Social Security

• those who have permanent kidney failure treated with dialysis or a transplant

Medicare is divided into parts:

Part A pays for hospital care, home health care, hospice care, and care in Medicare-certified nursing facilities. It is free.

Part B covers diagnostic studies, physicians' services, durable medical equipment used at home, and ambulance transportation. There is a cost.

Part D is optional. It helps pay for prescription drugs that are usually bought at a retail pharmacy.

HMOs that have contracts with the Medicare program must provide all hospital and medical benefits covered by Medicare. However, you must usually obtain services from the HMO network of health care providers.

Medicare provides basic health coverage, but it won’t pay all of your medical expenses. It may cover the costs of prostheses or bras, and the number covered per year may vary from state to state. Recently, Medicare has increased their coverage of the number of items for ostomy supplies used per month. If you have questions about Medicare, call 1-800-633-4227 or your local Social Security office.

Private insurance coverage that can be added to Medicare: If you are on Medicare, you may be able to add more coverage with a Medicare Supplement Insurance (commonly called Medigap) policy or a Medicare HMO sold by a private insurance company. There are 10 standard Medigap policies, each of which offers a different combination of benefits. Each is offered in all 50 states, although all plans may not be identical in all states. The plans are identified by letters A through J. It is important to compare Medigap policies because costs can vary, and some of the plans expect you to use only certain doctors or hospitals.

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, 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 get help paying for their out-of-pocket medical expenses from their state Medicaid program. For more information, contact your state Medicaid office.

State-sponsored children's health insurance programs

There 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. Usually, the child must be younger than18 and live in a family with a family income at or below 200 percent of the Federal poverty line for a family of the size involved. The program covers doctor visits, medicines, hospitalizations, dental care, eye care, and medical equipment. It is funded by state tax dollars. People enrolled in Medicaid usually are not eligible for state sponsored health insurance programs.

Veterans' benefits

If you are a veteran or a veteran's spouse or dependent, you may qualify for government benefits. Veterans' benefits change frequently, and the number of veterans' medical facilities has been declining in recent years. To get the most accurate information, call the Department of Veterans Affairs. (See the "Additional Resources" section for phone numbers.)

TRICARE is a federal program (formerly known as CHAMPUS) that provides approved inpatient or outpatient medical care for dependents of active-duty, retired, or deceased members of the military. This program has been set up to work more like a managed care system.

Breast and cervical cancer screening and treatment for low-income women

Breast cancer testing is now more available to medically underserved women through the National Breast and Cervical Cancer Early Detection Program (NBCCEDP). This program provides breast and cervical cancer early detection testing for women who are uninsured, or in some cases under-insured, for free or at very little cost. The NBCCEDP tries to reach as many women in medically underserved communities as possible, including older women, women without health insurance, and women who are members of racial and ethnic minorities. Each state offers the program and the Centers for Disease Control and Prevention (CDC) provides matching funds and support for each state program. The CDC can be contacted at 1-800-232-4636 or at the NBCCEDP Web site: www.cdc.gov/cancer/nbccedp. You can also contact your state's Department of Health for further information.

In 2000, the Breast and Cervical Cancer Treatment Act was signed into law. This Act enhanced the National Breast and Cervical Cancer Early Detection Program (NBCCEDP) by providing money to pay for breast and cervical cancer treatment in certain uninsured women. This new option will help women focus their energies on fighting their disease instead of worrying about how to pay for treatment. As in the Early Detection Program, individual states must adopt the program to receive the matching federal funds. Even though it is channeled through each state's Medicaid program, it helps women who are not eligible for Medicaid. The women must be under age 65 and without health insurance. As of May 2004, all 50 states had completed the required steps to accept this new Medicaid option. If you are trying to get treatment in this way, you can visit the Web site noted in the above paragraph and click "Find a Local Program" under the "View by Topic" list on the left side of the page. Or you can call the CDC number above.

Options for the uninsured

Shopping for insurance coverage

If you are not already insured, the following are things to think about when looking for coverage:

• An independent broker may be able to help you find a reasonable benefit package. Group insurance is better for most people than individual insurance.

• Getting employed by a large company is the surest way to gain access to group insurance.

• Some states have "guaranteed issue" individual plans that are available regardless of health history. Also, some states have state-subsidized health insurance options for low-income residents.

• Explore whether there are health maintenance organizations (HMOs) or health care service plans in your community. Coverage can be quite comprehensive through these plans. Many offer one period of open enrollment each year during which applicants are accepted regardless of health history.

• If you have been covered under your employer-sponsored plan for 1 day or more you should be able to keep your medical insurance through the Consolidated Omnibus Budget Reconciliation Act (COBRA). Your employer should be able to tell you, in writing, about your COBRA option. For more information, please see "COBRA (Consolidated Omnibus Budget and Reconciliation Act of 1986)" above.

• Parents of school-age children with cancer should explore school life insurance.

• Find out whether you can apply for group insurance through fraternal or professional organizations (such as those for retired persons, teachers, social workers, realtors, etc.). Look for a "guaranteed issue" plan.

• Explore your eligibility for Medicare, which covers most people who are 65 or older, or who are permanently disabled and have been receiving Social Security benefits for approximately 2 years.

• See if you are eligible for state or local benefits, such as Medicaid if you are in a low-income bracket or are unemployed. If you are currently employed, don't leave your job until you have explored insurance conversion options through your current plan. Many group plans have a clause that allows people to convert to individual plans, but premiums may be much higher. These individual plans usually must be applied for within 30 days of termination.

• A few hospitals and other non-profit medical facilities receive funds from the federal government so they can offer free or low-cost services to those who are unable to pay. Each facility chooses which services it will provide at no or lowered cost. Medicare and Medicaid services aren't eligible for Hill-Burton coverage. However, Hill-Burton may cover services not covered by other government programs. Eligibility for Hill-Burton is based on family size and income. You will need to find out if there is a facility in your area that has any Hill-Burton obligation for which you may qualify. If you are cared for at such a facility, you may apply for Hill-Burton assistance at any time, either before or after you receive care. Call the Hill-Burton Program for more information on this program. (See the "Additional Resources" section for phone numbers.)

In looking at insurance options, be aware of differences in coverage. Ask about choice of doctors, protections against cancellations, and increases in premiums. Find out what the plan really covers, especially in the event of catastrophic illness. What are the deductibles? (Sometimes higher deductibles go along with better comprehensive coverage.)

If you feel an insurance company has treated you unfairly, contact your state insurance commission for further information.

Health insurance options for college students

Many college students find themselves needing medical care when they do not have insurance because of the cost of insurance premiums. The American College Health Association has recommended that students be required to have health insurance coverage. Students need to know there are options for getting health insurance and that coverage is critical in case of a major medical emergency or a "catastrophic event."

Catastrophic coverage is health insurance that assures that you have access to health care and financial protection under the worst possible circumstances. Getting a cancer diagnosis would be considered a "catastrophic event."

For students, there are several available options. With any plan, coverage should be checked for common tests requested from students, like blood tests or Pap tests. Also, if you have any medical condition that you are concerned about, you may want to check with the insurance company about its policy on "pre-existing conditions" or medical conditions that were present when applying for health insurance. Here are the most common types of health insurance options for students.

College or University Sponsored Insurance Programs (SHIPs): The college or university may offer a reduced cost student health insurance. Make sure that this type of insurance includes catastrophic coverage, with at least a $500,000 lifetime maximum. Sometimes the plan may claim a high lifetime maximum, but limit it on a yearly basis. For example, it may be limited to only $100,000 per year. This may not be adequate coverage for a catastrophic illness. Make sure that you understand how long you are covered and whether it is only active coverage as long as the beneficiary is enrolled in classes. Often an advantage of this plan is that it is integrated to cover any charges that you may acquire at the Student Health Service. Consider also that often many colleges and universities maintain a counseling center where students can get short-term therapy at either no or low cost visit co-payments.

Employer-sponsored Coverage: This is coverage for the student under his or her parent's employer. With this type of insurance, the student must be dependent (for tax purposes) on his or her parent or guardian; often must be a full-time, not part-time student; and cannot be older than age 23 to 25. Sometimes the cost of this insurance is high, the health care providers may not be within an HMO’s service area, and service may not be integrated with the college's student health services or counseling centers.

Individual Insurance: There are individual health insurance plans from private companies that often cover students at lower costs. This may include companies like Kaiser Permanente and Blue Cross/Blue Shield. Some of these insurers require that you live in the state for 6 months before you are eligible for coverage under their plan. Check for catastrophic coverage. Also make sure this type of insurance does not exclude coverage based on any pre-existing conditions.

Uninsurable Risk Programs: There are several states that provide special coverage for people who have a pre-existing condition (a condition that was present before the coverage was applied for) and do not qualify for individual health coverage. Your state's department of health insurance can give you more information about this.

Medicaid, Indian Health Services, Dependents of Active Duty US Military, or Other Governmental Aid Programs: These types of programs are available, although some states exclude full-time students from these programs if they are working mostly with a poor population.

State coverage and health insurance options for the hard-to-insure

A number of states currently sell comprehensive health insurance to state residents with serious medical conditions who can't find a company to insure them. These state programs, sometimes called "risk pools," serve people who have pre-existing health conditions and are often denied private health insurance or have difficulty finding affordable coverage. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) provides nationwide standards and a guarantee of access to health insurance coverage in the individual market.

Health insurance risk pools

Health insurance risk pools are special programs created by state legislatures to provide health insurance for the "medically uninsurable" population. These are people who have been denied health insurance coverage because of a medical condition, or who have physical conditions that make them unable to purchase health insurance at any price.

A risk pool is created by a state and at present 34 states have them. They are non-profit associations and in most states do not require tax dollars to operate. Risk pools do require you to pay premiums, but some have programs so that low-income people do not have to pay as much.

Who is eligible to participate in a risk pool?

People applying for plan coverage must be residents of that state. State legislation outlines a range of requirements for eligibility such as proof of at least one of the following:

• that you have been rejected for similar health insurance by at least one insurer

• that you are presently insured and your current insurance has a higher premium than offered under the state plan

Many of the state plans do not allow you to apply for the risk pool if you are eligible for or are receiving Medicare or Medicaid. But some states have adopted a high-risk plan for people who are Medicare eligible.

Many states have also placed an enrollment cap on their plans. This means the plan will accept only a certain number of people into the plan at any one time. Others applying for coverage must go on a waiting list to get into the plan. Look at the section "States that Have Risk Pools" for a list of individual states and contact information.

Financial issues: getting money when you need it

The major costs of a cancer diagnosis and treatment include charges for time in the hospital, clinic visits, medicines, tests and procedures, home health services, services of doctors and other professionals, and treatment (surgery, chemotherapy, radiation therapy, and bone marrow or peripheral stem cell transplant). Insurance, managed care, or public health care programs pay most of these costs.

Families also face many indirect costs or "out-of-pocket" expenses. These costs can be for travel (gas and parking); places to stay, meals during admissions or clinic visits; extra child care costs; long-distance calls to doctors, friends, and relatives; special foods and nutritional supplements; and special equipment or clothing. Also, a child's treatment plan can cause parents to lose time at work and, in some cases, their salary. Even more money is lost if one parent has to quit a job or take an extended leave of absence. Of course, costs increase as treatment is extended, if there is recurrence of the cancer (it comes back), or if there are treatment complications.

Viaticals and living benefits from life insurance policies

Life-threatening illnesses and conditions that need a lot of medical care often lead to a need for immediate cash income. In many states, your life insurance policy may be a source of income through the acceleration of the policy's death benefit, known as "living benefits." You can use these benefits in several ways, including viaticals (sale of the life insurance policy) and loans against the face value of the life insurance policy from the original insurance company or from a third party.

Viaticals

A viatical is the sale of a life insurance policy for cash. The person insured (called the viator) sells his or her life insurance policy to a third party. As with any sale, what is being sold and how much it is being sold for are questions both sides must agree on.

A viatical transaction usually takes place when someone has a limited life expectancy. The person's life expectancy may be less than 6 months or as much as several years and must be certified by a doctor. The patient is probably unable to work and is likely to have a low income. To reduce money worries, the patient sells the life insurance policy for a lump sum cash payment. The payment is often between 60% and 80% of the face value of the policy, and is usually tax free. The payment belongs only to the holder of the policy.

A viatical insurance company buys policies from people with terminal illnesses. The viatical company becomes the new owner and sole beneficiary of the policy. It pays the premiums on the policy as long as the patient is alive. When the person dies, the death benefit from the policy goes to the viatical company.

Reasons for choosing a viatical:

• to pay for food, shelter, doctor visits, or other pressing needs

• to ease the stress of money worries

• to fulfill a lifelong dream

Drawbacks of a viatical:

• Your heirs receive no insurance money.

• You may not make the best trade available.

• Decision-making may be difficult.

• Once a policy is sold, the sale is usually not reversible.

Line of credit from a finance company

In this case, people with cancer who are not expected to live a long time transfer their life insurance's death benefit to a finance company. The company reviews your health status, then makes "advances" on the expected benefit. This is actually a loan, and as with all loans, interest rates vary. You may borrow up to 35% to 75% of your insurance's death benefit, depending on your situation. The death benefit is reduced by the loan amount, the premiums the company pays on the policy, fees, and the interest on the loans you have taken out. Not all life insurance is eligible. This is a new type of loan, and not offered by many companies at this time.

Living benefits and other choices

You also have other choices. You may be able to get a personal loan, or, instead of selling your policy outright to a third-party viatical company or transferring your death benefit, you may be able to get more money from the original insurance company. Many insurance companies make it possible for life insurance policy owners to collect all or part of their death benefits early -- before dying -- to cover extraordinary expenses. A life insurance policy usually pays benefits to a beneficiary after a policy owner dies. But in certain cases, those benefits are accelerated and are paid directly to a chronically or terminally ill policy owner before he or she dies. These are called living benefits or accelerated benefits.

In general, living benefits can range from 25% to 95% of the death benefit. The payment depends on your policy's face value, the terms of your contract, and the state you live in. Ask your insurer to provide you with a quote before you exercise your accelerated death benefit claim. Living benefits are not intended to replace health insurance or long-term care insurance. They can, however, give you extra help with needs that result from terminal or catastrophic illness. Contact your insurance agent or company for details on your policy's accelerated benefits plan.

For more information regarding living benefits from life insurance, please visit the American Council of Life Insurers Web site at www.acli.com.

Another choice is to get a loan from a third party. Some companies will lend money to terminally ill people who have a life expectancy of between 6 months and 5 years. The patient's life insurance policy is used as collateral. The company will lend a portion of the policy's face value, usually ranging from 35% to 85%, which will be paid back from the proceeds of the policy at the time of the patient's death. Any surplus funds revert to the original beneficiary. The interest rates on the loans vary but may range from 13% to 18%. There are no restrictions on how the money may be used.

Signing a contract for a viatical or living benefits: Before you make a final decision, think about the points below. Talk to a lawyer or a financial planner to help you decide what is best in your case.

• Get a clear picture of what's involved. Read about viaticals. Ask questions.

• Get professional advice regarding types of living benefits available and the pros and cons of each.

• Decide whether a viatical is really the best course of action for you.

• Talk to your doctor about how long you can expect to live.

• Find out if Medicaid or other benefits will be affected.

• Shop around. Get several bids. Bids can vary from 35% to 80% of the policy.

• Find out if the company is a broker. Some companies use their own money to buy policies, but others are brokers. A broker gets a commission from the company and may not act in your best interest.

• Negotiate; you might get a better deal.

Outside sources of financial help

Most families find it hard to turn to others or to agencies and funds for financial help. Families generally take pride in standing on their two feet and taking care of their own needs. The extra expenses of cancer may be the first time a family has had problems with money. Families should remember that their problems in this situation are short-lived and not unique. In the future, they may be the ones who can offer help to others.

There are many possible sources of help for families who need some extra financial support at this time:

• Income assistance for low-income families through Supplemental Security Income (SSI) benefits.

• Income assistance for needy families from the Temporary Assistance for Needy Families (TANF) program.

• Help with travel, meals, and lodging from public and private programs.

• Assistance with basic living costs (such as rent, mortgage, insurance premiums, utilities, and telephone) from public and private programs.

• Help from church, civic, social, and fraternal groups in the community.

Help may also be available from groups such as the Salvation Army, Catholic Social Services, the United Way, Jewish Social Services, and others that can be found in the yellow pages. The American Cancer Society also has many helpful services.

Sources of help with temporary lodging

Many treatment centers have short-term housing centers or discount programs set up with nearby motels and hotels. The clinic social worker or oncology nurse may have suggestions for low-cost housing during the hospital or clinic treatment.

The American Cancer Society has a limited number of Hope Lodges throughout the United States that provide places for families to stay during cancer treatment. Contact the ACS for information about a Hope Lodge near you.

Most major treatment centers have a Ronald McDonald House nearby. These houses provide low-cost or free housing to patients and their immediate family. Ronald McDonald houses are designed to offer a nice break to any family with a seriously ill child, not just those with limited funds. Although partly funded by McDonald’s Children's Charities, each house has its own management, sets its own admissions criteria, and operates according to its own rules. Check with your health care team's social worker or nurse for more information.

Sources of help with housing needs or mortgage payments

The extra expenses of treatment or major loss of family income may make it hard for families to meet their mortgage or rent payments on time. To keep a good credit rating, it is important to talk with your creditors or landlords about your situation and try to make special arrangements. Family, friends, or church members may provide short-term help if they are made aware of the problem. Talk about your situation with the team social worker who may know of special resources.

Families who need to move out of housing after a cancer diagnosis should talk with the county department of social services to find out if they qualify for government supported housing programs.

Sources of help with transportation costs

People who have Medicaid are entitled to help with travel to medical centers and doctors' offices for treatment. This may take the form of payment or reimbursement for gas, payment of bus fare, or may involve using a vanpool. County departments of social services in each state arrange this transportation assistance, but families must request it by speaking with their Medicaid eligibility worker.

The American Cancer Society's program, Road to Recovery, is available in some areas. In this program volunteers drive patients and families to hospitals and clinics for treatment. In some parts of the country, the ACS may also provide some limited help with the cost of gas. Contact your local American Cancer Society office for more information on what type of transportation program is available in your area.

The Leukemia & Lymphoma Society, through its Patient Aid program, helps families with the cost of gas and parking for outpatient treatment. There is a limit on the amount of financial help available yearly to each patient and family. Check with the team social worker about this program or see "Additional Resources" below.

Community and church groups may be sources of help with travel or its costs, too. Also, talk about getting help with hospital or clinic parking fees with the team social worker.

The National Patient Travel Helpline provides information about all forms of charitable, long-distance, medical air transportation. It also provides referrals to all appropriate sources of help available in the national charitable medical air transportation network. The hotline number is 1-800-296-1217 or contact the web site at www.patienttravel.org.

Sources of help with telephone service

Help with the cost of basic charges for telephone service may be available for temporary assistance for needy families. Speak with the eligibility worker in your county department of social services for more information. Families that have problems controlling long-distance charges may want to think about buying prepaid calling cards. Sometimes cell phone carriers will help out in short term situations so that you can avoid going over your cell phone minute limit for the month. Call your cell phone company before you go over your limit to see if they can give temporary help or suggest a better plan for you.

Sources of help with food costs

Some government programs help with food costs. These programs include the following:

• School meals, such as
• the Child and the National School Lunch Program
• the School Breakfast Program
• the Special Milk Program
• the Adult Care Food Program
• the Food Stamp Program
• Women, Infants and Children (WIC)
• the Summer Food Service Program
• Food Distribution, such as the Commodity Supplemental Food Program

These programs are run by the U.S. Department of Agriculture and you can learn more about them on their Web site at http://www.fns.usda.gov/fns/default.htm.

You may also get general help from special funds in your medical center or community, or assistance from targeted fundraising for an individual patient or family.

The team social worker can give you more information about resources that might benefit you and your family. There are organizations and written materials that can provide information on fundraising strategies too (see "Additional Resources").

Disability benefits

If you cannot work, find out if you have a long-term disability insurance policy. This type of policy typically replaces 60% to 70% of your income. Evaluate your policy by finding out the definition of "disabled," the monthly benefit amount, the benefit period, the waiting period, and its taxability status. Some companies also have a short-term disability option that covers you during part or all of the waiting period of the long-term disability policy.

Social Security Disability Income (SSDI)

If you have been working for many years, you probably have contributed to Social Security. In this case, you may qualify for disability benefits. However, you must meet Social Security's definition of disability, which is narrow. If you get turned down, it is best to appeal the decision. Some cases that were turned down originally end up being approved after an appeal. When approved, benefits do not begin until the sixth full month of disability. Your income has nothing to do with whether or not you qualify for SSDI. To find out how to apply, call the Social Security Administration. (See the "Additional Resources" section for phone numbers.)

Also keep in mind that after receiving SSDI for 24 months you become eligible for Medicare benefits.

Supplemental Security Income (SSI) benefits

SSI is designed to supplement the income of an eligible person or family in which there is a disabled person. The family or the person must have low income and limited assets. If you have not worked much or if your income was very low before you became unable to work, you may be eligible for Supplemental Security Income (SSI). To get SSI, your income and assets must fall below a certain level; you must be disabled, over 65, and/or blind. The amount you could get from SSI varies from state to state. If you do qualify, SSI pays you a monthly income that could be as much as $600 or more. Cost of living increases are given yearly.

Children can qualify if they meet Social Security's definition of disability. Income criteria are checked by the local Social Security Administration office and the determination of disability is made by disability evaluation specialists at the state Social Security office. Children with certain cancer diagnoses are considered disabled.

In most states, Medicaid is provided automatically to children receiving SSI. In others, a separate application must be made. You can get more information about SSI from the team social worker or from the nearest Social Security Administration office listed in the U.S. Government section of the telephone book. See "Additional Resources" below.

Temporary Assistance for Needy Families (TANF)

TANF is a program that replaced the former Aid to Families With Dependent Children (AFDC) program, administered by the Office of Family Assistance under the U.S. Department of Health and Human Services. TANF is a grant that gives states help in providing job opportunities to the people in their welfare programs. A social worker may be able to tell you the status of your state's plan that is most like the former AFDC plan.

States that have health insurance risk pools

Listed below are the states that currently offer risk pools. If your state isn't listed, you may want to contact the state department of insurance to find out if such programs are available in your state. Call directory assistance in your state capitol for information.

Alabama Health Insurance Plan
Toll-free number: 1-877-619-2447
Web site: healthinsurance.about.com/od/statespecificinformation/a/alabama.htm

Alaska Comprehensive Health Insurance Association
Toll-free number: 1-888-290-0616
Web site: www.achia.com

Arkansas Comprehensive Health Insurance Plan
Toll-free number: 1-800-285-6477
Web site: www.chiparkansas.org

California Comprehensive Major Risk Medical Insurance Program
Toll-free number: 1-800-289-6574
Web site: www.mrmib.ca.gov/MRMIB/MRMIP.shtml

CoverColorado
Toll-free number: 1-877-461-3811
Web site: www.covercolorado.org

Connecticut Health Reinsurance Association
Toll-free number: 1-800-842-0004
Web site: www.hract.org/hra/index.htm

Idaho Individual High Risk Reinsurance Pool
Toll-free number: 1-800-721-3272 (in-state only)
Web site: www.doi.state.id.us

Illinois Comprehensive Health Insurance Plan
Toll-free number: 1-866-851-2751 (in-state only)
Web site: www.chip.state.il.us

Indiana Comprehensive Health Association
Toll-free number: 1-800-552-7921
Web site: www.onlinehealthplan.com

Health Insurance Plan of Iowa
Toll-free number: 1-877-793-6880
Web site: www.hipiowa.com

Kansas Health Insurance Association
Toll-free number: 1-800-362-9290
Web site: www.khiastatepool.com

Kentucky Access
Toll-free number: 1-866-405-6145
Web site: www.kentuckyaccess.com

Louisiana Health Plan
Toll-free number: 1-800-680-8728
Web site: www.lahealthplan.org

Maryland Health Insurance Plan
Toll-free number: 1-866-780-7105
Web site: www.medhealthinsurance.com/high-risk-coverage.htm

Minnesota Comprehensive Health Association
Toll-free number: 1-866-894-8053
TYY: 1-800-841-6753
Web site: www.mchamn.com

Mississippi Comprehensive Health Insurance Risk Pool
Toll-free number: 1-888-820-9400
Web site: www.doi.state.ms.us/htm_files/mchirpa.html

Missouri Health Insurance Pool
Toll-free number: 1-800- 821-2231
Web site: www.mhip.org

Montana Comprehensive Health Association
Toll-free number: 1-800-447-7828
Web site: www.mthealth.org

Nebraska Comprehensive Health Insurance Pool
Toll-free number: 1-877-348-4304
Web site: www.nechip.com

New Hampshire Health Plan (NHHP)
Toll-free number: 1-877-888-6447
Web site: www.nhhealthplan.org

New Mexico Medical Insurance Pool
Toll-free number: 1-800-432-0750
Web site: www.nmmip.com

Comprehensive Health Association of North Dakota (CHAND)
Toll-free number: 1-800-737-0016
Web site: www.chand.org

Oklahoma Health Insurance High Risk Pool
Toll-free number: 1-800-255-6065
Web site: www.oid.state.ok.us/consumer/hrp.html

Oregon Medical Insurance Pool
Toll-free number: 1-800-848-7280
Web site: www.omip.state.or.us

South Carolina Health Insurance Pool
Toll-free number: 1-800- 868-2500

South Dakota Risk Pool
Phone: 605-773-3148 (ask for a Risk Pool representative)
Web site: www.state.sd.us/bop/riskpool.htm

Tennessee AccessTN
Toll-free number: 1-866-CoverTN (1-866-268-3786)
Web site: www.covertn.gov/web/access_tn.html

Texas Health Insurance Risk Pool
Toll-free number: 1-888-398-3927
TDD: 1-800-735-2989
Web site: www.txhealthpool.org

Utah Comprehensive Health Insurance Pool
Phone: 1-801-442-6660 for Salt Lake area only; 1-800-705-9173 for rest of state
Web site: selecthealth.org/portal/site/selecthealth/menuitem.0d8e2a6590fdb634cdb
302bee4744df9/?vgnextoid=7943a01c6dab8010VgnVCM10000029fad49fRCRD

Washington State Health Insurance Pool
Toll-free number: 1-800-877-5187
Web site: www.wship.org

West Virginia Health Insurance Plan / AccessWV
Toll-free number: 1-866-445-8491
Web site: www.wvinsurance.gov/accesswv

Wisconsin Health Insurance Risk Sharing Plan
Toll-free number: 1-800-828-4777
Web site: www.hirsp.org

Wyoming Health Insurance Pool
Toll-free number: 1-800-442-2376 (in-state only)
Web site: insurance.state.wy.us/consumer.html#8

Additional resources

More information from your American Cancer Society

The following related information may also be helpful to you. These materials may be ordered from our toll-free number, 1-800-ACS-2345.

After Diagnosis: A Guide for Patients and Families (also available in Spanish)

Children Diagnosed with Cancer: Financial and Insurance Issues

Clinical Trials: State Laws Regarding Insurance Coverage

Family and Medical Leave Act (FMLA)

Financial Guidance for Cancer Survivors and Their Families: Advanced Illness

Financial Guidance for Cancer Survivors and Their Families: In Treatment (also available in Spanish)

Financial Guidance for Cancer Survivors and Their Families: Off Treatment

Financial Guidance for Cancer Survivors and Their Families: How to Find a Financial Planner Sensitive to Cancer Issues

Financial Guidance for Families: Coping Financially with the Loss of a Loved One

Financial Guidance for Those With Concerns About Cancer: Can I Be Prepared If Cancer Occurs?

Medicare Coverage for Cancer Prevention and Early Detection (also available in Spanish)

Medicare Part D: Things You May Want To Know

National Breast and Cervical Cancer Early Detection Program

Prescription Drug Assistance (also available in Spanish)

What Is COBRA? (also available in Spanish)

What Is HIPAA?

National organizations and Web sites*

Americans with Disabilities Act
Toll-free number: 1-800-514-0301
Web site: www.ada.gov

Association of Community Cancer Centers
Web site: www.accc-cancer.org

Cancer Legal Resource Center (CLRC)
Toll-free number: 1-866-843-2572 (may need to leave a number for a call back)
Web site: www.disabilityrightslegalcenter.org

Centers for Disease Control and Prevention (CDC)
Information on TANF
Toll-free number: 1-800-311-3435
Web site: www.cdc.gov

Department of Health and Human Services
Toll-free number: 1-877-696-6775
Web site: www.hhs.gov

Department of Veterans Affairs
Information on TRICARE (formerly CHAMPUS)
Toll-free number: 1-(800) 827-1000 (reaches local VA office)
Web site: www.va.gov

Health Insurance Info
Georgetown University Health Policy Institute
Web site: healthinsuranceinfo.net

Hill-Burton Program
Toll-free number: 1-(800) 638-0742
Web site: www.hrsa.gov/hillburton

Internal Revenue Service (publications)
Toll-free number: 1-800-829-1040 / 1-800-829-4059 (TTY)
Web site: www.irs.gov

Medicare Hotline
Toll-free number: 1-800-633-4227
Web site: www.medicare.gov

National Cancer Institute
Toll Free Number: 1-800-422-6237 or 1-800-4-CANCER
Web site: www.cancer.gov

National Association of Insurance Commissioners (NAIC)
Toll-free number: 1-866-470-6242
Web site: www.naic.org

National Association of Hospital Hospitality Houses, Inc. (NAHHH)
Toll-free number: 1-800-542-9730
Web site: www.nahhh.org

Registered Financial Planners Institute
Telephone: 1-440-282-7176
Web site: www.rfpi.com

Ronald McDonald House Charities (RMHC)
Telephone: 1-630-623-7048
Web site: www.rmhc.org

Social Security Administration (SSI)
Toll-free number: 1-800-772-1213 / 1-800-325-0778 (TTY)
Web site: www.socialsecurity.gov

The Leukemia & Lymphoma Society
Toll-free number: 1-800-955-4572
Web site: www.lls.org

U.S. Department of Agriculture
Food and Nutrition Service
Nutrition Assistance Programs
Toll-free number: 1-800-FED INFO or 1-800-333-4636
Web site: www.fns.usda.gov

U.S. Department of Labor, Employee Benefits, Security Administration (EBSA)
Information on COBRA, Medicaid, Medigap, FMLA, HIPAA requirements of employer-based insurance coverage
Toll-free number: 1-866-444-3272 (1-866-444-EBSA)
Web site: www.dol.gov/ebsa

U.S. Equal Employment Opportunity Commission (EEOC)
Toll-free number: 1-800-669-4000
Web site: www.eeoc.gov

Life Insurance Settlement Association (for information on viaticals)
Telephone: 1-407-894-3797
Web site: www.lisassociation.org

*Inclusion on this list does not imply endorsement by the American Cancer Society.

Other publications

Landay, David. Be Prepared: The Complete Financial, Legal, and Practical Guide for Living with a Life-challenging Condition. New York: St. Martin's Press, 1998.

No matter who you are, we can help. Contact us anytime, day or night, for information and support. Call us at 1-800-ACS-2345 or visit www.cancer.org.

References

Centers for Medicare & Medicaid Services. "National SCHIP Policy Overview." Available at: http://www.cms.hhs.gov/NationalSCHIPPolicy/. Accessed October 18, 2007.

"HCTC: List of State-Qualified Health Plans." Available at: www.irs.gov. Accessed 11/13/2005.

Health Insurance Resource Center. Available at: http://www.healthinsurance.org/riskpoolinfo.lasso. Accessed October 31, 2007.

Facing Forward: A Guide for Cancer Survivors, National Cancer Institute. (NIH Publication No.94-2424, Revised July, 1994).

"Risk Pools—affordable health insurance for medically –uninsurable individuals." Available at: www.healthinsurance.org/riskpoolinfo.html. Accessed 11/12/2005.

Last Medical Review: 05/21/2008
Last Revised: 08/07/2008