You may not want to think about money right now, but it could become a problem

As a cancer patient, you may have financial resources available to help you with the mounting bills. These resources can be health insurance, government programs, disability benefits, aid from voluntary organizations, and living benefits from life insurance policies, including viaticals (viaticals will be explained later on) Even if you have health insurance, you will quickly learn that it doesn't cover everything. And even if you are well-insured, cancer can cause financial problems.

If you have no health insurance, it can be scary. But there are some other options you may want to think about.

This article covers:

• private health insurance
• government-funded insurance plans
• options if you are uninsured
• financial issues and possible sources of help
• a list of states with health insurance risk pools
• other resources

Private health plans

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 money problems. Many people have private insurance through employee group plans or individual plans.

A group plan is a policy that covers a group of people, usually employees of the same company, and often their dependents. In general, employees do not have to prove that they are healthy to be insured with their job's plan. Group plans usually cost less, and some employers pay part of the premium costs for employees.

Individual plans may check into your personal and family health and require physical exams or lab tests before they will insure you. They often charge higher rates or premiums based on age or health conditions, and in some cases, may not be willing to insure you at all. Some individual policies may also cover family members.

It is important to have accurate, up-to-date information and a good understanding of your financial situation and insurance coverage. And, if your insurance cost is not deducted from your paycheck, it is very important to pay your monthly insurance premiums on time.

Types of health plans

There are many types of health insurance and health service plans. Here are very brief descriptions of those that are most often used:

Fee-for-service plans

Fee-for-service plans, are also called indemnity or traditional health 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. Each year, you also have to pay a certain amount of your medical costs (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 the amount your insurance didn't cover. You also need to keep receipts of drugs and other medical costs. You are responsible for keeping track of your own medical expenses. This can help you greatly if there is a dispute about payments or other problems in the future.

Managed care plans

There are different types of managed health care plans. Most of them have lower premiums and co-payments than fee-for-service insurance. (Co-payments may also be called co-insurance. This is the amount you must pay at the time of service.) These amounts can differ between managed care companies and between services within the same company. There is usually no need to file claim forms. These plans most often cover preventive health care as well as serious illnesses. Here are the most common types of managed care plans.

• Health maintenance organizations (HMOs): The HMO will usually cover most expenses after a small co-payment. HMOs often limit your choice of providers to those within their approved provider network. This means you have to check their listing to be sure the doctor you want is one of their doctors. If not, you may have to change to a different type of health plan to have the doctor's services covered. Or, you may have to switch to one of the approved doctors on their list.

• Point-of-service plans: A point-of-service plan (POS) is a type of HMO. The primary care doctors in a POS plan usually refer you to other doctors in the plan or network. If your doctor refers you to a doctor who is not in the plan (out of network), the plan will still pay all or most of the bill. But if you choose a doctor outside the network, you will have to pay co-insurance, even if the service is covered by the plan. Co-insurance is what you must pay in addition to what the insurance company pays for each service. It is usually a certain percentage 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: The preferred provider organization (PPO) is a hybrid of fee-for-service and an HMO. Like an HMO, there are only a certain number of doctors and hospitals you can use to get the most coverage. When you use those doctors (sometimes called preferred or 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. So you pay more to choose providers that are not in the network.

Know your managed care plan

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. The gatekeeper is usually a primary care doctor who is responsible for the overall medical care of the patient. This doctor organizes and gives permission for medical treatments, tests, specialty referrals, and hospitalizations. For example, if you need to see an expert like a lung specialist, you would need a referral from the primary care doctor before the specialist sees you. Otherwise your plan may not pay.

Under some plans, members must use only the services of certain providers and institutions that have contracts with the plan. 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 you choose to go outside the network for care, you may have to pay an extra fee, or even pay for the full service with no insurance help.

Many different types of institutions and agencies sponsor managed care plans, not just insurance companies. These include employers, hospitals, labor unions, consumer groups, the government, and others. It helps to know all the ins and outs of the plan and how it will affect your care.

Other things to know about health insurance

Catastrophic illness or major medical clauses

Treating and managing most cancers costs a lot of money. Some insurance plans provide for extra coverage under a "catastrophic illness" clause. These are policies that cover major medical care needs. The policies usually have very high deductibles and fairly low premiums. They are useful when a person's primary medical policy has a lifetime limit, and can be good for people with chronic illnesses. Check to see if your plan includes such coverage.

Pre-existing condition exclusions

A pre-existing condition is a health problem that you had before you joined your medical plan. If you are a cancer patient and join a new health insurance plan, you may face a pre-existing condition exclusion period. 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.

If you refuse health insurance when it is first offered and then sign up later, the pre-existing condition exclusion can climb to 18 months after you sign up. And the time can be longer for independent policies and those not through an employer. In fact, some insurance may not cover certain illnesses at all.

If you get health insurance through your job, Federal law prevents the employer from imposing an exclusion period for a pre-existing condition in some situations. You may be able to avoid the 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 U.S. Department of Labor at 1-866-444-3272 to find out more about your specific situation. (See the section, "The Health Insurance Portability and Accountability Act of 1996" for more information.)

But if you are getting a plan that is not group coverage (including high risk pools), the pre-existing condition exclusion period can be many years or even unlimited. If you are getting a plan through someone other than an employer, the insurance provider can impose an elimination rider that would keep that disease, body part, or body system from ever being covered by that policy. It's important to know these things up front, before you sign up.

National law now prohibits discrimination based on genetic testing or test results

The Genetic Information Nondiscrimination Act (GINA)will not allow health insurers to turn down individuals or charge higher premiums for health insurance based on genetic information or the use of genetic services, such as genetic counseling. GINA defines genetic information as (1) an person's own genetic tests; (2) the genetic tests of family members; and (3) one or more family members with a genetic disease or disorder. GINA bars group health plans, individual plans, and Medicare supplemental plans from using genetic information to limit enrollment or to change premiums. It also forbids these insurers to request or require genetic tests. GINA applies to all health insurance plans (including federally regulated plans, state-regulated plans, and private individual plans). This part of the law takes effect May 21, 2009.

The law also forbids discrimination by employers based on genetic test results or genetic information. GINA states that employers must not discriminate on the basis of genetic information (no matter how they got the information) in hiring, firing, layoffs, pay, or other personnel actions such as promotions, classifications or assignments. This part of the law takes effect November 21, 2009.

Look carefully at health insurance options at work

Look closely and compare plans if you are trying to decide among several insurance or managed care options. Sometimes there is a chance to look at and consider different types of coverage during open enrollment periods. (Open enrollment is the time period when you are able to make changes in your coverage. It usually happens once a year). Sometimes it is possible to add yourself, your spouse, or a child to a work health insurance policy outside the open enrollment period if you've had a major change in situation; for instance, if you've gotten married or your spouse has been laid off. Check with your health insurance administrator at work about this.

Hospital indemnity policies

Hospital indemnity policies, sometimes called supplemental medical policies, pay a fixed amount for each day a person is hospitalized. There may be a limit on the total number of hospital inpatient days it will pay in a calendar year, or a cap on the total number of days it will pay. The money received from this type of policy can be used as the insured wishes. It is often used for medical costs not paid by the insurance company, or the other expenses that families face when one member is ill.

Case managers and financial assistance planners

Hospitals, clinics, and doctors' offices often 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 be a complicated process.

How to manage your health insurance

DO NOT allow your health insurance to expire. If you are changing insurance plans, don't let one policy lapse until the new one goes into effect -- this includes when you are switching to Medicare. Pay premiums in full and on time. It is often difficult and expensive to get new insurance.

• Know the details of 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 to get the benefits or file your claim. If you think you might need more insurance, ask your insurance carrier if 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 (EOBs), bills, receipts, requests for sick leave or family medical leave (FMLA), 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 special payment arrangements if you let them know about your situation.

• Send in your bills for reimbursement as you get 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. (See the section "Who regulates insurance plans?")

• Learn about the insurance laws that protect the public. The Agency for Healthcare Research and Quality has a section entitled "Questions and Answers About Health Insurance." You can find this at www.ahrq.gov/consumer/insuranceqa/.

Keeping records of insurance and medical care costs

Keeping track of the bills, letters, claim forms, and other papers that begin flowing into a household after a cancer diagnosis can be overwhelming. But keeping careful records of medical bills, insurance claims, and payments helps families manage their money better and keep their stress levels lower. Some families already have a system for tracking their finances and records and only need to expand it and create new files. Others may have to come up with a plan to handle all of the 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 (IRS) can give you information and free publications regarding tax exemptions for cancer treatment expenses (see "Additional resources"). These rules change from time to time, so the IRS is the best source of the newest information.

Keep records of the following:

• medical bills from all health care providers -- write the date you got the bill on each one

• claims filed, including the date of service, the doctor, and the date filed

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

• dates, names, and outcomes of calls, letters, or emails to insurers and others

• non-reimbursed or outstanding medical costs and other costs related to treatment

• meals and lodging expenses

• travel to and from doctor's appointments and treatments (including gas, mileage, and parking)

• long-distance phone 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 ideas to help you with record-keeping:

• Decide who in the family will be the 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 using a file cabinet, drawer, box, binders, or loose-leaf notebooks.

• Review bills soon after getting them and note any questions about charges.

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

• 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 you do not normally get copies of canceled checks, talk to your bank or credit union about how to them when you need them.)

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

• Keep a list of cancer care team members and all other contact persons with their phone and fax numbers. Save any e-mail addresses you have for them in a handy place.

• Find out what is tax deductible and be sure the original versions of those records are kept. (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, pay attention to notices that state that a bill will soon be turned over to a collection agency. You want to avoid getting bills turned over to collection agencies if at all possible. Families can do the following:

• Explain the problem to the hospital or clinic financial counselor or the 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.

• Think about asking relatives or friends to 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. Before you appeal, you may want to take some additional steps:

• Ask for a full explanation of why the claim was denied.

• Review your health insurance plan's benefits.

• Contact your health plan administrator to find out more about the refusal.

• Ask the doctor to write a letter explaining or justifying what has been done or is being requested.

• Talk to your state insurance department or the agency that regulates your insurance company to learn more (see the section "Who regulates insurance plans?").

You can then re-submit the claim with a copy of the denial letter and your doctor's explanation, along with any other written information that supports using the test or treatment that is being denied. Sometimes the test or service will only need to be "coded" differently. If questioning or challenging the denial in these ways does not succeed, 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.

• Request a written response.

• Keep the originals of all the letters you get; the team may be able to help you make copies if you need them.

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

• Formally appeal the denial in writing, explaining why you think the claim should be paid. Your cancer care team members (doctor, nurse, social worker) may be able to help with this.

• Get help from the consumer services division of your state insurance department or commission. (Check the blue pages of your phone book or visit the National Association of Insurance Commissioners on the Web at: http://naic.org/state_web_map.)

• 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. A detailed guide from America's Health Insurance Plans (AHIP) has information about internal and external review of denied claims. It has details on each state's review process, and can be found at www.healthclaimappeals.org/home.html.

Federal laws that let you keep employer-sponsored health insurance coverage when you leave your job

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). Even though you may have the right to keep your insurance coverage for some months, there are no laws that guarantee the insurance will be adequate or that you will be able to afford it.

COBRA (Consolidated Omnibus Budget and Reconciliation Act of 1986)

COBRA gives you the right to temporarily continue health insurance coverage at the employer's group rates, but you usually pay much more than what you paid while employed. COBRA is available when insurance 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 being covered by 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 for the spouse or child in cases of divorce or legal separation, the covered person becoming eligible for 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 is not 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 after work is stopped or hours are reduced, 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 cases of family changes, the beneficiary must do it, as in these situations:

• divorce
• legal separation
• an employee's child reaches the status of non-dependent
• the employee becomes eligible for Medicare

This means it may be the employee, the employee's spouse, or the employee's adult child who needs to notify the plan administrator of the qualifying event. If this notice is not done within the deadline, the spouse or child may lose their COBRA rights. But if a family member gets COBRA due to one of these changes in family situation, it can be extended to 36 months. 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.

You can keep your health insurance if the premium is paid, and until the person becomes covered under another group policy, up to a certain time limit. Premiums cannot be more than 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 how it works (see "Additional resources"). Families often are concerned about being able to pay the premium for COBRA. If this is the case, talk to your team social worker who may have suggestions about how to help with these costs.

For more information, including details on short-term help paying COBRA premiums based on the American Recovery and Reinvestment Act of 2009, read our document, What is COBRA?

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

This bill has many clauses that can help 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 the section, "Pre-existing condition exclusions.")

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

• HIPAA requires insurers to renew coverage for all employers and individuals when premiums are paid.

• The Act also guarantees that group insurance coverage is available for employers with 2 to 50 employees. But it does not require these small employers to buy the insurance that is offered.

• HIPAA also helps protect anyone left out of group health coverage after COBRA has run out. If you are eligible and act within 63 days of losing COBRA coverage, HIPAA guarantees that you can buy some type of coverage and that you will have a choice of at least 2 options. But it is important to know that no one will notify you that you are eligible or of the 63 day time limit. Contact your state insurance department or commission to find out what is available to you, or call us.

For more information about HIPAA ask for our document, What is HIPAA? or contact your state department or commission of insurance. See the "Additional resources" section.

The Family and Medical Leave Act of 1993

The Family and Medical Leave 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 health coverage.

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 for contact information, or find it in the "Additional resources" section.

The Americans with Disabilities Act of 1990

The Americans with Disabilities 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. The ADA 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 Health Insurance Portability and Accountability Act makes it easier to change jobs and move from one group insurance plan 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 phone line (see "Additional resources"). You can also get more information in our document, Americans with Disabilities Act: Information for People Facing Cancer.).

Government-funded health plans

Medicare

Medicare is a federal program funded through the Social Security system. It provides health insurance for U.S. citizens and other eligible people who meet certain criteria. Young people with cancer may receive Medicare benefits after collecting Social Security benefits for 2 years under the Supplemental Security Income program. You can get more information from the Social Security Administration (check the blue pages of your phone book or find it in the "Additional resources" section), or by talking with your cancer care team social worker. Medicare is also federal health insurance for people who meet any of the following requirements:

• are at least 65 years of age

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

• 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. For most people, there is no monthly premium, but you pay a yearly deductible for your health care before Medicare pays anything. After that's paid, Medicare pays its share, and you pay your share (your co-insurance or co-payment) for covered services and supplies. You can go to any doctor or supplier that accepts Medicare and is accepting new Medicare patients, or to any hospital or other facility. You may have a Medigap policy or other supplemental coverage that may pay deductibles, co-insurance, or other costs that aren't covered by the Medicare Part A (see the section "Private insurance coverage that can be added to Medicare").

Part B covers diagnostic studies, doctors' services, durable medical equipment used at home, and ambulance transportation. Part B is optional, and there is a monthly premium which is based on your income. Each year, before Medicare pays anything, you must pay your own medical expenses to equal the deductible, based on Medicare's approved "reasonable charge," not on the provider's actual charge. And you must still pay co-insurance or a co-payment on the rest of the covered charges for that year.

Part C is actually a combination of Parts A and B but it is provided by private insurers. These private insurance companies must be approved by Medicare, and must provide all hospital and medical benefits covered by Medicare. Called Medicare Advantage, these private insurers charge a monthly fee and some include the Part D prescription drug coverage (see "Part D"). Part C is not available everywhere. Medicare Advantage plans can be PPOs, HMOs, or fee-for-service plans. (See the section "Types of health insurance plans.") There is also a Part C Medicare Special Needs plan, which is designed for people with long-term health problems. These plans must include Parts A, B, and D coverage.

Part D is optional. It helps pay for prescription drugs that are usually bought at a retail pharmacy. If you join, you pay a monthly premium, which varies by plan, and a yearly deductible. You will also pay a part of the cost of your prescriptions, including a co-payment or co-insurance. Costs vary based on which drug plan you choose. Some plans may offer more coverage and a wider choice of drugs for a higher monthly cost. If you have limited income and resources, you may qualify for extra help and you may not have to pay a premium or deductible. You can apply or get more information about the extra help by calling Social Security at 1-800-772-1213 (TTY 1-800-325-0778) or by visiting www.socialsecurity.gov on the Web. You can find out more about Medicare Part D and how it applies to people with cancer in our document, Medicare Part D: Things People with Cancer May Want to Know.

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. Medicare also limits the number of items for ostomy supplies used per month. If you have questions about Medicare, call 1-800-633-4227 or contact your local Social Security office.

Private insurance coverage that can be added to Medicare (Medicare Supplement Insurance or Medigap)

If you are enrolled in standard Medicare, you may be able to add more coverage with a Medicare Supplement Insurance policy (commonly called Medigap). There are 10 standard Medigap policies. Each offers a different combination of benefits and is offered in all 50 states, although all plans may not be the same in all states. The plans are identified by letters A through J. It is important to compare Medigap policies because premiums and other 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 get 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:

• low-income families with children
• Supplemental Security Income (SSI) recipients
• infants born to Medicaid-eligible pregnant women
• children under age 6
• pregnant women whose income is below the family poverty level

Medicare beneficiaries who have a 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 (see "Additional resources" section).

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 low-cost health insurance for eligible children. Usually, the child must be younger than 18 and live in a family with a family income at or below 200% 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' and military benefits

Veterans: If you have ever been on active duty in the military, you may qualify for Veterans Administration (VA) health benefits depending on several factors. The VA looks at how long you served, the type of discharge you received, disability, income, availability of VA services in your area, and other factors to decide if you are eligible. Veterans' benefits change often, and the number of veterans' medical facilities has been declining in recent years. To get the latest information, call the Department of Veterans Affairs at 1-800-827-1000 or visit their Web site at www.va.gov/healtheligibility/.

Active duty, reservists, retirees, survivors, and family: TRICARE is the Department of Defense's health insurance program for those in the military, as well as some family members, survivors, and retirees. It mainly consists of TRICARE Prime, an HMO; TRICARE Extra, a preferred-provider option; and TRICARE Standard, a fee-for-service plan. One U.S. option combines Standard and Extra; options may be different overseas. The TRICARE Reserve Select program is offered for certain reservists, who must pay premiums for their coverage. Other options may be available to some, such as military retirees who get Medicare.

The service member must register eligible family members in the Defense Enrollment Eligibility Reporting System (DEERS) for them to get any health coverage. Records can be kept up to date by the service member or the family members through the nearest military personnel office or ID card-issuing facility.

Each TRICARE plan has its own limits and requirements. Choose your plan carefully and know how it works. You can find out more on TRICARE at www.tricare.mil, including a comparison of different plans.

Widows or widowers, and spouses or children of military members with service-related disabilities: Another program called Civilian Health and Medical Program of the Department of Veterans Affairs (CHAMPVA) is available to certain spouses or widows(ers) and their children who are not eligible for TRICARE. CHAMPVA can cover the spouse or widow(er) and the children of a veteran who:

• is rated permanently and totally disabled due to a service-connected disability
• was rated permanently and totally disabled due to a service-connected condition at the time of death
• died of a service-connected disability
• died on active duty and the dependents are not eligible for TRICARE benefits

CHAMPVA is a comprehensive health care program in which the VA shares the cost of covered health care services and supplies with eligible beneficiaries. The program is administered by the VA Health Administration Center in Colorado. You can find them on the Web at www.va.gov/hac (select CHAMPVA), or call 1-800-733-8387.

Activated reservists and their employee health benefits: Members of the military reserve units who are called up for active duty from private employment have specific rights about the health care coverage they get from their employers. They are allowed to pay the full cost of insurance, very much like COBRA, during their time away. When they return to work, their coverage must be re-instated without any waiting period. Visit the U.S. Department of Labor on the Web at www.dol.gov/elaws/vets/userra/mainmenu.asp. See "Additional resources" section for other U.S. Department of Labor contact information.

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

Medically underserved women can get tested for breast cancer for free or at very little cost 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. 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) matches 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 more 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 the disease instead of worrying about how to pay for treatment. As in the Early Detection Program, individual states must adopt the program to get 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 NBCCEDP 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.

Who regulates 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 insurance commission or department of insurance in each state. You can find your state's insurance department in the blue pages of your local phone book, or visit the National Association of Insurance Commissioners on the Web at: http://naic.org/state_web_map.htm (or see "Additional resources" for a phone number to call).

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. (See the "Additional resources" section for its Web site and phone number.) You may have to ask your employer if their health plan is fully insured or self-insured.

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

Medigap policies (Medicare Supplement Insurance policies) are regulated by federal agencies, as well as some state laws. Contact Medicare (CMS) and/or your state department of insurance for problems.

Medicaid is controlled by your state health department.

Medicare is run by the U.S. Social Security Administration.

TRICARE (formerly CHAMPUS) is overseen by the U.S. Department of Defense.

The Veteran's Health Care system (including CHAMPVA) is regulated by the U.S. Department of Veteran's Affairs.

Options for the uninsured

Shopping for insurance coverage

If you are not already insured, here are some 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 get access to group insurance.

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

• Find out if there are health maintenance organizations (HMOs) or health care service plans in your community. You can sometimes get very good coverage through these plans. Many have an open enrollment period each year during which applicants are accepted regardless of past health problems.

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

• Find out if 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 children who are permanently disabled and have been getting Social Security benefits for 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 employed, don't leave your job until you have found out if you can convert your group insurance to an individual plan. Some 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 leaving a job. (This is different from COBRA, which allows you to stay with the group insurance but only for a limited time.)

In looking at insurance options, find out about differences in coverage. Ask about choice of doctors, protection against cancellations, and increases in premiums. Find out what the plan really covers, especially in the event of a catastrophic illness (a serious illness, like cancer, that can add up bills quickly). How much will the deductibles and co-payments cost you? (Sometimes higher deductibles go along with better or more complete coverage.)

If you feel an insurance company has treated you unfairly, contact your state insurance commission for more information. See the "Additional resources" section to find your state insurance department.

Health insurance options for college students

Many college students find themselves needing health care, but they do not have insurance because of the cost of premiums. The American College Health Association has recommended that students be required to have health insurance coverage. Students need to know their options for getting health insurance and that coverage is important 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 some financial protection under the worst possible circumstances. Getting a cancer diagnosis would be considered a catastrophic event.

Students have several available options. With any plan, ask about coverage for common tests students need, 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 (medical conditions that you already have). Here are the most common types of health insurance options for students.

Student health insurance programs (SHIPs): The college or university may offer a reduced-cost student health insurance. Try to get insurance that includes catastrophic coverage, with a $1,000,000 or higher 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 $500,000 or even less per year. This may not be enough to treat a serious illness. Make sure that you understand how long you are covered and if coverage is only active as long as the beneficiary is enrolled in classes. Often an advantage of this plan is that it is integrated to cover any charges from the Student Health Service. Consider also that many colleges and universities often maintain a counseling center where students can get short-term therapy at either no or low cost co-payments at each visit.

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. But if this is the best option, the college student may stay on a parent's plan even after reaching non-dependent status by using the COBRA option and paying the full monthly premium. The student or parent must notify the employer promptly upon reaching the age of non-dependency (see "COBRA").

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 and yearly or lifetime limits. Also make sure this type of insurance does not exclude coverage based on any pre-existing conditions.

Uninsurable risk programs: There are some states that provide special coverage for people who have a pre-existing condition (one you had before you applied for coverage) and do not qualify for individual health coverage. Your state's department of health insurance can give you more information about your state, or see the section "States that have health insurance risk pools."

Medicaid, Indian Health Services, dependents of active duty U.S. military, or other government aid programs: These types of programs are available, but some states exclude full-time students from these programs if the programs work mostly with low-income people.

While you are looking for health insurance

Check into Hill-Burton funds: A few hospitals and other non-profit medical facilities receive Hill-Burton funds from the federal government so they can offer free or low-cost services to those who can't 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. But Hill-Burton may cover services that other government programs don't.

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 help 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.)

Compare your drug list to low-cost prescription programs: A few drugstores and discount stores now offer certain generic drugs at very low prices. Most of the time, these do not include cancer drugs -- although some offer tamoxifen in their programs. Even people with insurance may be able to lower their co-payments and save money by getting some of their medicines at very low cost ($4 to $10 for each refill).

See the section "Financial issues: Getting help with living expenses" for ideas on help with non-medical expenses.

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

A number of states now 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. People with health problems are often denied private health insurance or have trouble 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 for some people who are losing group health insurance coverage (see section on HIPAA). But this doesn't mean that you can afford it or that coverage will be adequate.

All states are different. Some states have special laws requiring that insurers offer health insurance to anyone who applies. This is called guaranteed issue. A few states also limit the premium the insurance company can charge, even if a person has a pre-existing condition. This is called community rating. If you live in a state that requires community rating, you are not likely to need insurance risk pools.

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 today 34 states have them. They are non-profit associations and in most states are not funded by tax dollars. Risk pools 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 take part in a risk pool?

People applying for plan coverage must live in that state. State laws or regulations outline other 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 getting Medicare or Medicaid. But some states have adopted a high-risk plan for people who are eligible for Medicare.

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. People who apply for coverage after that must go on a waiting list to get into the plan. Look at the section "States that have risk pools" for a list of states and contact information.

Financial issues: Getting help with living expenses

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 treatment, and bone marrow or peripheral stem cell transplant). Insurance, managed care, or public health care programs pay most of these costs if you are covered in such a plan.

Families also face many indirect costs or "out-of-pocket" expenses. These costs can be for a number of different needs, such as

• travel (gas and parking)
• lodging (a place for the patient and/or family to stay) during treatment done away from home
• meals during admissions or clinic visits
• extra child care costs
• long-distance communication ( calls, faxes, copies of medical records, etc ) with doctors, friends, and relatives
• special foods and nutritional supplements
• special equipment or clothing

Also, a cancer treatment plan can cause family members to lose time at work and, in some cases, all or part of their salary. Even more money is lost if a family member has to quit a job or take an extended leave of absence. Of course, costs increase as treatment is extended, if there are treatment complications, or if the cancer comes back (recurs).

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 get 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, both sides must agree on what is being sold and how much it is being sold for.

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 long 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. This payment is given only to the person who holds the policy.

A viatical insurance company buys policies from people with terminal illnesses. The viatical company becomes the new owner and the only 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 life-long dream

Drawbacks of a viatical:

• Your heirs get 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 "cash 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, on this "life insurance line of credit". 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 use your accelerated death benefit option. Living benefits are not intended to replace health insurance or long-term care insurance. But they can give you extra help with needs that result from terminal or catastrophic illness. Contact your insurance agent or life insurance 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 then go 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, loans, and living benefits. Ask questions.

• Get professional advice about 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. 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 often 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 treatment-related travel, meals, and lodging from public and private programs.

• Help 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 like the Salvation Army, Catholic Social Services, the United Way, Jewish Social Services, and others that can be found in the yellow pages.

Even though it is not available in all areas, United Way of America and the Alliance of Information and Referral Systems have set up a 211 service in many parts of the country. You can call 211 to find out what help might be available in your area, or visit them on the Web at www.211.org.

There are Agency on Aging offices in many areas that can help older people with cancer. Call 1-800-677-1116 for their Eldercare Locator to learn what is in your area, and whether you might be able to get help. You can also check on the Web at www.n4a.org.

The American Cancer Society also has many helpful services. Call to find out more about these and other local resources in your area.

Sources of help with short-term housing

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 hospital or clinic treatment.

The American Cancer Society has a limited number of Hope Lodges throughout the United States which give families a place to stay during cancer treatment. Contact us 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 families. 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 admission standards, and operates according to its own rules. Check with your health care team's social worker or nurse to learn more, or see "Additional resources."

Sources of help with housing needs or mortgage payments

The extra costs of treatment or major loss of family income may make it hard for families to pay their mortgage or rent 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 be able to give you short-term help if they are made aware of the problem. Talk about your situation with your team social worker who may know of special resources.

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

Sources of help with driving and ground 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 being paid back (reimbursed) for gas, payment of bus fare, or may involve using a vanpool. County departments of social services in each state arrange for help with transportation, but families must ask for it by speaking with their Medicaid case worker.

The American Cancer Society Road to Recovery program is available in some areas. 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, can help some families with the cost of gas and parking for outpatient treatment. There is a limit on the amount of financial help given to each patient and family for each year. Check with your team social worker about this program or see "Additional Resources."

• 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.

Sources of help with air transportation costs

The ACS Air Miles program is a joint effort between Mercy Medical Airlift (MMA)/National Patient Travel Helpline (NPATH) and the American Cancer Society. The program is designed to help patients with the costs of air travel for cancer-related reasons. MMA is a long-standing non-profit member of the Air Charity Network. NPATH is a part of MMA that serves as a central clearinghouse for many medical air charities. Call us at 1-800-ACS-2345 to find out if you are eligible for help with air travel. MMA/NPATH helps set up the mileage on behalf of ACS, through the ACS call center staff.

Sources of help with telephone service

Help with the cost of basic charges for phone service may be available from 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 charges may want to think about buying pre-paid calling cards, pre-paid cell phones, or plans with pre-paid minutes. If you call your cell phone carrier before you go over your limit, sometimes they can help you avoid going over your minutes limit for the month.

The Universal Service Administrative Company is another resource that may help if your income is very low. If you visit their Web site at www.usac.org/li/low-income, you can learn more about phone service help that's available in your state. Or you can call 1-888-641-8722 and follow the low income prompts.

You may also want to call the ACS to find out about other local sources of help with telephone service.

Sources of help with food and food costs

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

• School meals, such as

• National School Lunch Program
• School Breakfast Program
• Special Milk Program
• Team nutrition

• Supplemental Nutrition Assistance Program (formerly called the Food Stamp Program)

• Women, Infants and Children (WIC)

• Farmers' Market Nutrition Program
• Senior Farmers' Market Nutrition Program

• Summer Food Service Program

• Food Distribution, such as the Commodity Supplemental Food Program

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

Meals on Wheels: This program is designed more for people who are disabled, homebound, or elderly. Volunteers home-deliver prepared foods. You can contact them at 703-548-5558 or visit their Web site at www.mowaa.org.

Other kinds of help

You may also get general help from special funds in your medical center or community. Or maybe you can get help from fundraising for you or your family. The team social worker can give you more information about resources that might help you and your family. There are organizations and written materials that can give you ideas on ways to raise money, too (see "Additional resources").

About Internet access

You may notice that many groups and organizations now have a lot of information on the Internet and may be harder to call or reach in person. When you do call, you may find that they encourage you to find the information you need on their Web site. For many groups, this is a way to save money and they can focus funds on services to those in need.

For many people, especially families who are having financial troubles, Internet access may not be available at home -- computers and monthly Internet charges are costly. This may make it seem harder to find what you need. But if you must check something on the Internet, many public libraries offer free Internet access.

But Internet access is not required to find help -- and there are many kinds of information that are not available on the Internet at all. Because of this, many organizations still provide toll-free phone numbers so that people without Internet service can learn about and ask for services. Don't be embarrassed to tell people that you don't have Internet access or that you can't check their Web site.

And you can always call us, day or night, to find out about getting the help you need.

Disability benefits

If you get to the point that you cannot work, find out if your employer has a long-term disability insurance policy before you leave your job. This type of policy often replaces 60% to 70% of your income. Read your policy closely. Find 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 can help replace income during part or all of the waiting period of the long-term disability policy.

Social Security Disability Income

If you have been working for many years, you probably have contributed to Social Security. In this case, you may qualify for disability benefits. But you must meet Social Security's definition of disability, which is very strict. If you get turned down, appeal the decision. Some cases that were turned down the first time 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 Social Security Disability Income (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 getting SSDI for 24 months you become eligible for Medicare benefits.

Supplemental Security Income benefits

Supplemental Security Income (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 a 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 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. Disability evaluation specialists at the state Social Security office decide whether or not you are disabled. Children with certain cancer diagnoses are considered disabled.

In most states, Medicaid is automatically given to children getting SSI. In others, you must apply for it separately. 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" for more information.

Temporary Assistance for Needy Families

Temporary Assistance for Needy Families (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 helps states provide job opportunities to the people in their welfare programs. A social worker may be able to tell you about your state's plan that is most like the former AFDC plan.

States that have health insurance risk pools

The states that currently offer risk pools are listed here. If your state isn't listed, you may want to contact the state department of insurance (also called the Insurance Commission) to find out if such programs are available in your state. Some states without risk pools have other types of coverage that you may be able to get if you meet certain requirements. See the "Additional resources" section for the National Association of Insurance Commissioners to find your state's insurance commission, or call your state capital's directory assistance.

Alabama Health Insurance Plan
Toll-free number: 1-877-619-2447
Web site: www.alseib.org/healthinsurance/ahip/plansoffered

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/Pages/default.aspx

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.idaho.gov/Health/individual.aspx

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 Insurance Association (ICHIA)
Toll-free number: 1-800-552-7921
Web site: www.onlinehealthplan.com/index.cfm?xnode=0&ti=100&CFID=2471036&CFTOKEN=72312654

Iowa Comprehensive Health Association
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/index.cfm

Louisiana Health Plan
Toll-free number: 1-800-736-0947
Web site: www.lahealthplan.org

Maryland Health Insurance Plan
Toll-free number: 1-888-444-9016
Web site: www.marylandhealthinsuranceplan.state.md.us

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.mississippihealthpool.org

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: 1-866-622-4711
Web site: www.nmmip.com

North Carolina Health Insurance Risk Pool (NCHIRP)
Toll-free number: 1-866-665-2117
Web site: www.nchirp.org

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: 1-877-793-6447
Web site: http://okhrp.org

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 ext 46401 (Outside Columbia)
Phone number in Columbia area: 803-788-0500, ext. 46401
Web site: www.doi.sc.gov/consumer/schip.htm

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: www.fritzfx.8m.com/hiputah/abouthip.html

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

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/whip.html

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)

• Americans with Disabilities Act: Information for People Facing Cancer

• 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 People with Cancer 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*

2-1-1 Information and Referral Search (may be able to find help in your local area)
Toll-free number: 211
Web site: www.211us.org

Agencies on Aging/Eldercare Locator (to find agencies with local resources for older people with cancer)
Toll-free number: 1-800-677-1116
Web site: www.n4a.org

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

Association of Community Cancer Centers (to find a cancer treatment program)
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.cancerlegalresourcecenter.org

Department of Health and Human Services -- to get contact info for health department for Temporary Assistance for Needy Families (TANF) or Medicaid
Toll-free number: 1-877-696-6775 -- can provide a listing for your state health department
Web site: www.hhs.gov
www.acf.hhs.gov/programs/ofa/tanf/about.html -- has information about TANF
www.acf.hhs.gov/programs/ofa/states/tanf-info.htm -- lists contact information for each state's health department

Department of Defense health insurance programs
TRICARE (formerly CHAMPUS)
Toll-free number: 1-800-538-9552 -- to update DEERS records or check on denied claims
Web site: www.tricare.mil

Department of Veterans Affairs (for information on eligibility for Veteran's health programs or CHAMPVA)
Toll-free number: 1-800-827-1000 (reaches local VA office)
Web site: www.va.gov or www.va.gov/healtheligibility

Georgetown University Health Policy Institute
(Offers free online Consumer Guides for Getting and Keeping Health Insurance for each state)
Web site: healthinsuranceinfo.net

Georgetown University Health Policy Institute
(Offers free online Consumer Guides for Getting and Keeping Health Insurance for each state)
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
TTY: 1-800-829-4059
Web site: www.irs.gov

Medicare Hotline (if you already have Medicare)
Toll-free number: 1-800-633-4227
Web site: www.medicare.gov

National Cancer Institute
Toll-free number: 1-800-422-6237 (1-800-4-CANCER)
Web site: www.cancer.gov

National Association of Insurance Commissioners (to find your state's Insurance Commissioner)
Toll-free number: 1-866-470-6242
Web site: http://naic.org/state_web_map.htm

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: 440-282-7176
Web site: www.rfpi.com

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

Social Security Administration (SSA) for SSI, SSDI, retirement benefits, and Medicare enrollment
Toll-free number: 1-800-772-1213
TTY: 1-800-325-0778
Web site: www.socialsecurity.gov for SSI, SSDI, retirement benefits and more
www.ssa.gov/mediinfo.htm for Medicaid and Medicare information

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

Universal Service Administrative Company (telephone help for people with low income)
Toll-free number: 1-888-641-8722 (follow the "low income" prompts)
Web site: www.usac.org/li/low-income

U.S. Department of Agriculture
Food and Nutrition Service
Nutrition Assistance Programs
Toll-free number: 1-800-FED INFO (1-800-333-4636)
For information on SNAP (food stamps) only, call 1-800-221-5689
Web site: www.fns.usda.gov

U.S. Department of Labor, Employee Benefits, Security Administration (EBSA)
Information on COBRA, FMLA, and HIPAA requirements of employer-based insurance coverage; self-insured health plans; and information for military reservists who must leave their private employer for active duty
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 and living or accelerated benefits on life insurance policies)
Telephone: 407-894-3797
Web site: www.thevoiceoftheindustry.com

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.

*Inclusion on these lists does not imply endorsement by the American Cancer Society.

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

America's Health Insurance Plans (AHIP) Health Claim Appeals: A guide to resolving health insurance disputes. Accessed at: www.healthclaimappeals.org/home.html on February 27, 2009.

Centers for Medicare & Medicaid Services. "National SCHIP Policy Overview." Available at: http://www.cms.hhs.gov/NationalSCHIPPolicy/. Accessed February 27, 2009.

Centers for Medicare & Medicaid Services. Federal Fiscal Year 2008 High Risk Insurance Pool Grant Awards. Accessed at www.cms.hhs.gov/HighRiskPools/Downloads/2008HRPAWARDS.pdf on February 27, 2009.

Department of Veterans Affairs. CHAMPVA Eligibility. Accessed at: www.va.gov/hac/factsheets/champva/FactSheet01-03.pdf on February 27, 2009.

Gruber LR, Chair, NASCHIP Communications Committee. STATE HIGH RISK POOLS HOLD VALUE IN THE ERA OF HEALTH REFORM, 2007. Accessed at: www.naschip.org/2006/State%20Risk%20Pools'%20Value%209-28-07.pdf on February 23, 2009.

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

Hudson KL, Holohan MK, Collins FS. Keeping Pace with the Times — The Genetic Information Nondiscrimination Act of 2008. New Eng J Med 2008;358:2661-2663.

National Association of Health Underwriters. State Individual Market Coverage for Medically Uninsurable People, May 2008. Accessed at: www.nahu.org/Legislative/state_uninsurable_options_may_2008.pdf on February 27, 2009.

Health Insurance Resource Center. Accessed at www.healthinsurance.org on February 27, 2009.

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

Tricare Choices at a glance. Accessed at: www.tricare.mil/tricaresmartfiles/Prod_539/CHOICES_Flyr_08_4pg_L.pdf on February 27, 2009.

Last Medical Review: 04/07/2009
Last Revised: 06/08/2009