Cancer can have a devastating financial impact on survivors and their families. Two types of expenses are associated with cancer care: 1) direct medical costs and 2) related non-medical expenses such as travel to and from treatment, child care, housekeeping assistance, and home care products.

Direct medical costs are those resulting from cancer treatment (such as physician's fees, hospital expenses, and pharmacy bills). Most of these expenses are covered by basic health insurance plans. See Insurance Rights of Cancer Survivors [with a hyperlink] for more information on how to find health insurance that pays for your cancer treatment. The amount of medical costs you must pay depends on your diagnosis, extent of insurance coverage, and the community in which you are treated.

Everyone recognizes that medical care for a serious illness can be quite expensive. Few people, however, are prepared for the nonmedical costs of illness until they are faced with mounting bills. Most nonmedical costs related to cancer care are not covered by health insurance. Depending on the extent of your insurance policy, you may have to pay for such nonmedical items as transportation to and from treatment, child care, a nurse's aide, a housekeeper, a counselor (such as a social worker or psychologist), and treatment-related consumer products (such as a wig). Additionally, many survivors find that their insurance premiums are increased and sometimes discontinued after their diagnoses.

Cancer can have an especially harmful financial impact on those survivors who are not employed, do not have adequate health insurance, or do not have savings or other financial resources. The cost of cancer care is particularly high for those who require expensive long term care, including rehabilitation or long stays in a hospital or nursing home.

While survivors' costs are increasing, their income may be decreasing. Survivors who are unable to work or face employment discrimination may experience a loss of income and insurance benefits. As a result, many cancer survivors must dip into savings or borrow money to pay for cancer care.

If the costs of cancer care far exceed your resources, you may want to contact a financial counselor to help you plan a budget. Look in the telephone directory under consumer credit counseling services for a nonprofit service that can help you manage your bills. A nonprofit service is likely to provide free or inexpensive assistance; a for-profit company will charge you a fee for its service.

If you cannot locate a nonprofit service in your community, contact the National Foundation for Credit Counseling for the name of a credit counseling service in your area:

National Foundation for Credit Counseling
(800) 388-2227
www.nfcc.org

NFCC, a coalition of nonprofit consumer credit counseling services, provides confidential financial counseling for people having trouble managing their bills.

Sources of Financial Support

Private sources of financial support

A number of organizations provide financial support for the costs of direct medical care and related expenses. For example, some organizations have programs that provide free transportation to and from treatment when a volunteer is available. Others offer "lending libraries" of wigs, hospital beds, wheelchairs and related products. Some organizations offer stipends to families who cannot pay their bills.

The type and amount of financial assistance available varies from community to community. Many of these services are not advertised, but are available for the asking. Resources to contact for financial assistance include:

Cancer Care, Inc.
275 Seventh Avenue
New York, NY 10001
(800) 813-HOPE (4673)
www.cancercare.org

Cancer Care is a nonprofit organization that provides guidance, information, and referrals to cancer patients and families, free of charge. Cancer Care also offers limited financial assistance for treatment-related costs on a restricted basis in New York City, Long Island, New Jersey, and Connecticut.

Leukemia and Lymphoma Society
1311 Mamaroneck Ave, Suite 310
White Plains, NY 10605
http://lls.org/hm_lls

The Leukemia & Lymphoma Society's Co-Pay Assistance Program offers assistance to patients toward private health insurance premiums, private insurance co-pay obligations, Medicare Part B, Medicare Plan D, Medicare Supplementary Health Insurance, and Medicare Advantage premium or co-pay obligations. 

National Association of Community Health Centers, Inc.
1330 New Hampshire Avenue, NW, Suite 122
Washington, DC 20036
(202) 659-8008
www.nachc.com

The National Association of Community Health Centers provides a listing of local nonprofit, community-owned health care programs serving low income and medically under- served urban and rural communities.

National Hospice and Palliative Care Organization
1901 North Moore Street, Suite 901
Arlington, VA 22209-1714
(800) 658-8898
www.nho.org

The National Hospice and Palliative Care Organization is a nonprofit organization that advances the philosophy and practice of hospice care.

Needy Meds
(334) 662-0023
www.needymeds.com

Needy Meds is a clearinghouse for free information about getting medications from pharmaceutical companies. Needy Meds makes information about pharmaceutical manufacturer’s assistance programs more accessible.

Oncolink
oncolink.upenn.edu

Oncolink, managed by the University of Pennsylvania, is a widely respected website for cancer-related information. It includes a special section, Financial Issues for Patients that provides information on reimbursement assistance programs.

Patient Advocate Foundation
780 Pilot House Drive, Suite 100-C
Newport News, VA 23606
(800) 532-5274
www.patientadvocate.org

The Patient Advocate Foundation provides education and legal counseling about managed care, insurance, and financial issues for cancer patients.

Pharmaceutical Research and Manufacturers of America (PhRMA)
1100 15th Street NW
Washington DC 20005
www.phrma.org

PhRMA provides The Directory of Prescription Drug Patient Assistance Programs, which is updated yearly. It lists company programs that provide drugs to physicians whose patients could not otherwise afford them. The guide covers how to make a request for assistance, what medicines are covered, and basic eligibility criteria.

In addition to these organizations, you can also learn about financial help in your community by contacting the social work department of your hospital, a cancer resource center, a local cancer organization, your labor union, a community service organization, a religious organization, a social organization, and your local congressional representative's office.

Public sources of financial support

The National Cancer Institute’s Cancer Information Services offers an extensive listing of financial assistance for cancer care.

NCI’s Cancer Information Services
(800) 4-CANCER (422-6237)
www.nci.nih.gov

Some hospitals and other health facilities that receive federal funding under a program called “Hill-Burton” must provide care for people who cannot pay for it. You can learn more about this program and obtain a list of hospitals in your area that receive Hill-Burton funding by calling (800) 638-0742.

1. Social Security Benefits

The Social Security Act creates several programs for providing financial assistance to qualified individuals. These programs include disability insurance benefits, unemployment compensation, and supplemental security income for the disabled. For more information about these programs, contact the Social Security Administration's toll-free hotline at (800) 772-1213.

Retirement Benefits: To be eligible for retirement benefits, you need not be disabled or poor. All that is required is that you be of a certain age and have paid into the Social Security system.

Under certain circumstances, children of retirees may receive additional benefits. A widow, widower, surviving divorced spouse, child or parent of a person who was entitled to Social Security benefits may directly receive Spouses', Survivors', and Dependents' benefits if certain conditions are met.

The Supplemental Security Income (SSI) Benefits program is designed to provide income to people with income below the federal minimum level who are 65 or older, or are blind or disabled. Eligibility is determined by need, not whether you have paid into Social Security when you worked. Although SSI payments can be quite small, in many states an individual receiving SSI benefits will automatically be eligible for Medicaid and also may receive a state supplemental payment.

Disability Insurance Benefits: Disability benefits are designed to provide income to people who are unable to work because of a disability. You are entitled to receive disability benefits while you are disabled before the age of 65 if:

1. You have enough Social Security earnings to be insured for disability;
   
2. You apply for benefits;
   
3. You have a physical or mental disability that prevents you from doing any substantial gainful work;
   
4. The disability must be expected to last, or has lasted, at least 12 months, or must be expected to result in death; and
   
5. You have been disabled for five consecutive months.
   In some cases, spouses of disabled claimants also are entitled to benefits.

The amount of disability benefits is based on a sliding scale percentage of wages determined by elaborate, frequently changing formulas based on your age and past earnings. An employed person may not collect benefits. Workers may not receive both workers' compensation and Social Security disability for the same illness. The medical records of individuals who apply for Social Security disability are evaluated according to regulations issued by the Social Security Administration. Individuals who are denied benefits may appeal to an administrative law judge.

To determine whether your cancer is a disability under the law, the Social Security Administration considers what type of cancer you have, the extent of metastasis, and how you are responding to treatment. Small localized tumors that respond to therapy usually do not constitute an impairment. For example, early stage prostate cancer that is successfully treated with surgery is not considered a severe impairment. Cancer that has spread beyond regional lymph nodes, however, is usually considered a severe impairment. Otherwise, your diagnosis is evaluated on a case by case basis.

2. Veteran's Benefits

The Department of Veterans Affairs offers a variety of benefits to veterans. Although most disability benefits apply to veterans whose disability is service connected, which cancer seldom is, some benefits are available to cancer survivor veterans.

Depending on when you served, your age, and your income, you may be eligible for a nonservice connected pension. An additional allowance may be paid if you are in a nursing home, need a home aid, or are housebound because of your illness.

Hospital care in VA facilities is provided to veterans who meet certain standards, such as those who are eligible for Medicaid, need care related to exposure to cancer-causing substances (such as dioxin, Agent Orange, or nuclear fallout), have a VA pension, or have a limited income. Outpatient care and medical equipment also are available under certain circumstances.

Additionally, the Department of Veterans Affairs offers a variety of other benefits to qualified veterans, including life insurance, burial benefits, death pension to your dependents if your death is nonservice connected, and civil service preference certificates if you seek government employment. For more information, contact:

Department of Veterans Affairs
www.va.gov

Department of Federal Benefits for Veterans and Dependants
(800) 827-1000

The Uniform Benefits Package
Enrollment Service Center
(877) 222-VETS (8387)

Deducting Medical Expenses from Your Taxes

Part of the money you spend on medical care for yourself, your spouse, and your dependents may be itemized deductions for federal income tax purposes. Keep track of physician fees, prescription drugs, dental expenses, home nursing fees, hospital bills, medical insurance premiums that you (not your employer) paid, laboratory bills, and transportation and lodging if you sought medical care away from your home.

At the end of the calendar year, add up all of your medical expenses. From this number, you must then subtract a percentage of your gross income. You may deduct the balance from your income subject to federal income tax.

The Internal Revenue Service has a number of free publications that describe potential deductions related to health care. An IRS counselor will also answer over the telephone your questions about the tax regulations.

Internal Revenue Service
(800) 829 1040 for information
(800) 829-3676 for publications

For more information on how you can manage your finances and cancer, check out NCCS's Cancer Survival Toolbox.

Written by Barbara Hoffman, J.D., General Counsel, NCCS. A Cancer Survivor's Almanac: Charting Your Journey. Minneapolis, MN: Chronimed Publishing, 1996.

© 2000 by the National Coalition for Cancer Survivorship