Financial Assistance from NationalOrganizations for Cancer SurvivorsJane Levy, ACSW

Cancer is an expensive illness. Its costs include the di-rect and related expenses of diagnosis and treatment

as well as societal costs related to loss of earnings, earningpower, and productivity. The costs to patients and theirfamilies can be particularly devastating on those who arenot employed, do not have adequate or any health insur-ance, or do not have savings or other resources. Even themost fiscally astute family can find itself overwhelmed andunprepared for the costs of treatment and related out-of-pocket expenses.

Financial Costs of Cancer

The three types of expenses associated with cancer arethose of direct medical costs, related nonmedical expenses,and daily living expenses. Cancer treatment expenses in-clude physician fees, hospital costs, and medication costs.Basic health insurance may cover such expenses, with theextent or terms of coverage dictating the cost to the pa-tient. Millions who have health insurance have inadequatecoverage for outpatient care or prescription medication.And, there are an estimated 43 million persons in this coun-try not covered by any form of health insurance.1 Theseinclude individuals employed by small businesses, part-timeworkers, and persons whose circumstances have changeddue to employment, death, or divorce. Medicaid or otherstate insurance programs do not cover a significant numberof the poor, and costly premiums often force persons withlow incomes to forgo their insurance.2

Health insurance does not cover most of the nonmedi-cal costs of cancer. These costs include such services astransportation to and from treatment, childcare, home care,and products such as wigs and prostheses, over-the-countermedications, and other devices and medical aids.

Third, expenses related to daily living, such as food,shelter, utilities, and insurance premiums, often becomehardships due to the lack of or loss of income after receiv-

ing a cancer diagnosis. The options for assistance are oftenfew or have to be pieced together from several sources.

Psychosocial Costs of Cancer

Financial concerns affect patients’ and families’ abilitiesto marshal their emotional resources to cope with cancer.Feelings of guilt, shame, and embarrassment may surfacefor some patients. They may sense resentment from familyat the hardship created by the lack of financial resources.Financial stress also may interfere with treatment compli-ance when patients cannot afford transportation to treat-ment or prescribed medications.

The topic of money, often taboo under normal condi-tions, may be even more so under the strained circum-stances of illness, with families finding it difficult to face theproblem and to ask for help before a crisis starts. Moneyconcerns may extend beyond current needs to future needsand crises that are not related to cancer.3

Role of Professionals

Professionals can assist families facing cancer by help-ing them to manage their current resources, to understandinsurance coverage, to access available public and privateresources, and to understand their rights in the workplaceand protections from existing legislation. Financial re-sources may include health insurance, government pro-grams, disability benefits, assistance from voluntary organi-zations, and living benefits from life insurance policies(including viaticals). This article primarily focuses on thefinancial support and guidance provided by voluntary orga-nizations as well as a few of the major public programs forindividuals who are uninsured and have low incomes.

Most medical centers, community cancer centers, andvoluntary organizations are staffed by trained professionals,usually social workers, nurses, information specialists, casemanagers, and, occasionally, attorneys, all of whom provideexpert guidance and counseling around the complexities ofinsurance, government programs, workplace concerns, andfinancial planning. These individuals also can direct clientsto new community resources or can offer assistance withfundraising. These organizations strengthen patient and

Jane Levy, ACSW, Director of Patient Assistance Programs,Cancer Care, Inc. National Office, New York, New York.

Department Editors: Marie M. Lauria, MSW, CCSW; VictoriaMock, DNSc, RN, AOCN; and Marion E. Morra, MA, ScD.

Queries and contributions for Patient Resources may be sentto the Department Editors at Cancer Practice, American CancerSociety, 1180 Avenue of the Americas, New York, NY 10036.

48 CANCER PRACTICE January/February 2002, Vol. 10, No. 1© American Cancer Society 1065-4704/02/$15.00/48 48–52

Patient Resources

family coping abilities by including financial resource infor-mation that teaches communication, advocacy, and prob-lem-solving skills. Many of these organizations publish ormaintain helpful online resources on all aspects of financialassistance, insurance, and workplace concerns.

Some organizations provide direct financial assistanceto patients for medical or related services. The stipends areoften small relative to need but can help avert a crisis byassisting with a service such as transportation or childcare.Many organizations can also help to find services at reducedcost or no cost.

Select National Organizations

Some of the national organizations that support, pro-vide, or offer information about financial assistance are dis-cussed here (see Tables 1, 2 for additional listings).

American Cancer Society

The American Cancer Society (ACS) information spe-cialists provide information and referral on financial assis-tance issues through their toll-free line (800-227-2345), ontheir web site (www.cancer.org) and through local divi-sions. The ACS also maintains an extensive online databaseof national and local resources that has a zip code searchfeature. In addition, the ACS has excellent information onall aspects of financial assistance, government programs,insurance, and workplace issues online at its Cancer Re-source Center under “Financial Assistance” and “InsuranceMatters.” In some cases, assistance in providing rides forpatients, the provision of wigs, and assistance with thecosts of prostheses and Hope Lodges may be available.

Leukemia and Lymphoma Society

The Leukemia and Lymphoma Society (LLS) offers in-formation and financial aid to patients who have leukemia,lymphoma, Hodgkin’s disease, multiple myeloma, and otherhematologic cancers. Callers may request a booklet describ-ing their patient aid program or may locate an LLS office andspeak to a patient services manager by calling their toll-free number at 800-955-4572. The LLS also has an onlinefinancial resource guide with information and links to othersites (www.leukemia-lymphoma.org) with a section onmanaging finances. This agency is developing a financialtracker tool to help patients manage all treatment and re-lated expenses.

Cancer Information Service

The National Cancer Institute offers help both throughits toll-free telephone service (800-4-CANCER) and on itsweb site (www.cancernet.nic.nih.gov). Information spe-cialists can answer questions on the telephone line andsend fact sheets and other information. Individuals and pro-

fessionals can search the web site database for information,and for financial and other resources.

Cancer Care, Inc.

Cancer Care is a national organization with a staff ofmasters-level social workers who assist patients with can-cer, their families, and professionals through free counsel-ing, education, information, and referrals. In addition, Can-cer Care has several financial assistance programs. Thelargest is the Avoncares Program for Medically UnderservedWomen, which is funded by a grant from the Avon ProductsFoundation. Avoncares provides financial assistance, edu-cation, and support to women who have low incomes, areuninsured, or are underinsured and are in need of diagnos-tic and related services (eg, home care, childcare, and trans-portation) for breast, cervical, and ovarian cancers. Theagency also has smaller grants that provide help with theexpenses of home care, childcare, and transportation na-tionwide for women with all cancers, and locally for menand women who reside in the New York City metropolitanarea, New Jersey, Connecticut, and San Diego and ImperialCounties in California.

Cancer Care’s social workers respond to all requests forfinancial assistance by helping clients connect with re-sources in their communities, using a variety of sourcesincluding the Helping Hand Resource Guide, which isavailable online or in print. The Cancer Care web site’s(www.cancercare.org) extensive section called “HealthPolicy and Advocacy” has detailed information and helpfullinks on insurance, and workplace and government entitle-ment programs. Cancer Care services are free and are ac-cessible toll-free at 800-813-4673, online, or at agency of-fices in New York, New Jersey, and Connecticut.

The Patient Advocate Foundation

This national organization is staffed by trained casemanagers and a network of volunteer attorneys who pro-vide education, legal counseling, and information and refer-ral concerning managed care, financial issues, job discrimi-nation, and debt crisis matters. The Patient AdvocateFoundation (PAF) publishes the National Financial Re-

source Guide for Patients: A State by State Directory. Re-source listings include organizations providing legal assis-tance, energy relief, and housing assistance, and statedepartments for insurance, Medicaid, and tax relief infor-mation. Also included is a listing of pharmaceutical compa-nies’ indigent drug programs as well as a section on fund-raising. The PAF also publishes a helpful booklet entitledThe Managed Care Answer Guide. The National Financial

Resource Guide is available in print for a fee by contacting thePAF at 800-532-5274 or online at www.patientadvocate.org.

Financial Assistance for Women with Low Income

Breast and cervical cancer early detection services areavailable to medically underserved women through the

Patient Resources 49

National Breast and Cervical Early Detection Program(NBCCEDP). This program provides free or low-cost screen-ing and some diagnostic testing to uninsured women. Eachstate administers the program through nonprofit organiza-tions and health clinics with matched funds from the Cen-

ters for Disease Control and Prevention. Women must meetstate age and income requirements to be eligible.

In 2000, the Breast and Cervical Treatment Act wassigned into law, extending the NBCCEDP program to in-clude treatment funds. States must adopt the program to be

Table 1. Select National Organizations Providing or Supporting Financial Assistance

American Amputee Foundation501-666-9540Information, support, and financial assistance for prosthetic devices

American Cancer Society1-888-227-2345; www.cancer.org.Education, support, toll-free information, online cancer resource center

Bone Marrow Foundation800-365-1336; www.bonemarrow.org.Education, support, and financial assistance for direct and ancillary costs of transplantation

Cancer Care, Inc.800-813-4673; www.cancercare.orgEducation, support, print and online resource guide, financial assistance for related medical needs

Cancer Information Service800-4-CANCER; www.cancernet.nci.nih.govInformation support and resources.

Corporate Angel Network Westchester County914-328-1313; www.corpangelnetwork.org.Finds free air travel on corporate planes

Cure for Lymphoma Foundation800-235-6848; www.cfl.orgEducation, support, limited financial assistance for treatment-related expenses

Encore Plus-YWCA National Office800-95 EPLUS; www.ywca.orgAssists women of low income seeking breast and cervical screenings

Leukemia and Lymphoma Society800-573-8484; www.leukemia-lymphoma.orgEducation, support, web site resource directory; financial assistance for specific procedures and related costs

National Association of Hospitality Houses Inc.800-542-9730; www.nahhh.orgFree or low-cost temporary lodging for patients undergoing treatment

National Bone Marrow Transplant Link800-546-5268; www.comnet.org/nbmtlinkInformation, support, fundraising assistance, online resource guide

National Breast and Cervical Early Detection Program, The Centers for Disease Control and Prevention888-842-6355; www.cdc.gov/cancer/nbccedpBreast and cervical early detection services for qualified women

National Foundations for Credit Counseling800-388 2227; www.nfcc.orgNo-cost or low-cost credit counseling through network of member agencies

National Foundation for Transplants800-489-3863; www.transplant.orgFundraising assistance

National Organization for Rare Disorders800-999-6673; www.rarediseases.orgClearinghouse for information, newsletter, medication assistance program

National Patient Air Travel Center800-296-1217; www.patienttravel.orgClearinghouse for charitable and discount air travel

United Way800-411-8929; www.unitedway.orgNationwide directory of information and referral sources

50 CANCER PRACTICE January/February 2002, Vol. 10, No. 1

eligible for matching funds. To learn more about the pro-gram and about participating states, contact the Centers forDisease Control and Prevention toll-free at 888-842-6355 orvisit their web site at www.cdc.gov/cancer.

Cancer Care’s Avoncares program for Medically Under-served Women also provides money for postscreening ser-vices. This complements the NBCCEDP program by assist-ing women who are ineligible for its services.

Pharmaceutical Assistance Programs

Patient assistance programs are offered by some phar-maceutical companies to help pay for medication and can-cer treatment drugs. In most cases, a physician, nurse, orsocial worker must apply on the patient’s behalf. A list ofthese programs may be found on the web site of the Phar-maceutical Research and Manufacturers of America atwww.pharma.org or on the web sites of the major cancerorganizations. The National Organization of Rare Disorders

Inc. also maintains lists of companies manufacturing orphandrugs at 800-999-6673 or www.rarediseases.org.

Special Support Programs

Two programs that support financial resources byteaching patients and caregivers problem-solving and advo-cacy skills as well as helping to locate appropriate resourcesare the Cancer Survival Toolbox and Strength for Caring.

The Cancer Survival Toolbox is a free set of self-learning audiotapes developed by the National Coalition ofCancer Survivorship, the Association of Oncology SocialWork, and the Oncology Nursing Society. The toolboxserves to help patients and families develop practical skillsto deal with diagnosis and treatment by teaching skills inadvocacy, communication, information, decision making,and problem solving. It is available in English and Spanish.There are additional modules, “Topics for Older Persons”and “Finding Ways to Pay for Care,” that discuss treatmentcoverage and payment options for the uninsured, federallaws, healthcare rights, government entitlement programs,pharmaceutical benefits, and insurance benefits. Contactthe National Coalition of Cancer Survivorship at 877-622-7937 or www.cansearch.org to obtain free copies of theToolbox.

Strength for Caring is a free program for cancer familycaregivers developed by the University of PennsylvaniaSchool of Nursing and sponsored by Ortho-Biotech Inc., apharmaceutical company specializing in cancer treatments.It is a comprehensive half-day workshop conducted bynurses or social workers to provide support and educationto caregivers, including resources and the management offinancial and insurance concerns. Strength for Caring isoffered nationwide through local hospitals and agencies. Tolearn more call 888-ICARE80 or visit the web site at www.oncolink.upenn.edu/sfc.

Transportation and Lodging

Nonprofit organizations that arrange free or reduced-cost air transportation for patients with cancer going to andfrom treatment include the Air Care Alliance, the CorporateAngel Network, Air Lifeline, and the National Patient AirTravel Center. The National Association of Hospital Hospi-tality Houses and the Hope Lodges affiliated with the ACSprovide information, free or low-cost temporary lodging,or both to patients undergoing treatment away fromhome. The ACS, along with local organizations, can assistin providing rides to treatment centers for patients. Foronline information, visit www.cancercare.org/hhrd/findingtransportation.asp.

Fundraising Guidance

Some organizations specialize in assisting patients andfamilies in raising funds for expensive medical treatments.They help families arrange for fundraisers and maintain ac-counts to which tax-deductible contributions can be made

Table 2. Select Fact Sheets andPublications Available

“Financial Assistance for Cancer Care”National Cancer Institute, Cancer Information Service800-422-6237 or www.cancernet.nci.nih.gov/support-resources

“National Organizations that Offer Services to People with Cancer”National Cancer Institute, Cancer Information Service800-422-6237 or www.cancernet.nci.nih.gov/support-resources

“Becoming Well Again Through Financial Aid Resources”American Brain Tumor Resource Sheets, American Brain Tumor

Association800-886-2282 or www.abta.org

“Frequently Asked Questions on Insurance and Employment Issues”National Coalition for Cancer Survivorship877-622-7937 or www.cansearch.org

“Frequently Asked Questions by Consumers about Receiving Hill BurtonFree or Reduced Care Health Resources and ServicesAdministration”

www.hrsa/gov“Financial Assistance for Prostheses and Other Assistive Devices”

National Limb Loss Information Centerwww.amputee-coalition.org

“How to Find Resources in Your Own Community If You Have Cancer”Cancer Care Briefs, Cancer Care800-813-4673 or www.cancercare.org

Facing Forward: A Guide for Cancer SurvivorsNational Cancer Institute800-22-6237 or www.cancernet.nci.nih.gov/

A Helping Hand: The Resource Guide for People with Cancer, FourthEdition

Cancer Care, Inc800-813-4673 or www.cancercare.org

National Financial Resource Guide for Patients: A State by StateDirectory

Patient Advocate Foundation800-532-5274 or www.patientadvocate.org.

Patient Resources 51

on the patient’s behalf. For more information on fundrais-ing, contact the National Foundation for Transplants at 800489-3863 or www.transplants.org and the National BMTLink at 800-546-5208.

Financial Information and Support onthe Internet

Two Internet-based not-for-profit organizations thatprovide helpful information on financial issues are On-colink (www.oncolink.upenn/edu) and the BMT Infonet, orThe Blood and Marrow Transplant Information Network(www.bmtnews.org/).

Oncolink, managed by the University of Pennsylvania,provides a wide range of cancer-related information, includ-ing a section on financial issues that includes up-to-datenews on insurance-related issues and pharmaceutical assis-tance and viatical settlements.

The BMT Infonet (formerly the Blood and MarrowTransplant Newsletter) is a web site for those interested instem cell, bone marrow, and cord blood transplantation.The site is divided into many user-friendly sections includ-ing a newsletter, drug database, links to support services,and a resource directory, which contains sections on fund-raising, financial assistance, and insurance concerns. Thefinancial assistance section has a listing of state organiza-tions that provide specific financial help to transplant can-didates and an attorney referral service for insurance prob-lems related to transplantation.

Local Sources of Financial Help

Local charitable organizations and state and local gov-ernments often provide financial assistance, guidance, andsupport. Voluntary agencies, such as the ACS, SalvationArmy, Catholic Charities, Jewish Family Service, and Luther-an Social Services, may offer financial assistance or case-management services to help clients obtain assistance.Many communities have excellent cancer organizations,

such as the Little Red Door Cancer Agency in Indianapolis,IN, Cancer Action in Kansas City, MO, and Can Action inRochester, NY, that offer support and guidance aroundpractical services.

In addition, local and county governments may offerspecial programs, such as utility and rent assistance or low-cost transportation, to eligible individuals. Most communi-ties have an area agency on aging offering low-cost servicesto persons older than age 60 years. The federally run HillBurton Program funds certain medical facilities and hospi-tals to provide financially needy patients with free or low-cost care. Patients can learn about these programs fromknowledgeable individuals in the community such as thehospital social worker, home care or discharge-planningnurse, or the United Way, which operates in most commu-nities. United Way information specialists can provide di-rection to local resources. Consult its online directorywww.unitedway.org/ for local chapters.

Conclusion

The financial costs of cancer can be a tremendous bur-den to patients and their families. Stress related to financialconcerns can impede successful coping and can interferewith treatment recommendations. Professionals can helppatients and families face the financial crisis of cancer byhelping them to manage their financial concerns and toaccess all public and private resources. National voluntaryorganizations provide this help through direct assistance,guidance from trained professionals, and innovative pro-grams and publications.

References

1. Mills RJ. Health Insurance Coverage: 1999. Washington, DC:US Census Bureau; 2000.

2. Hoffman B. Financial costs and resources. In: Hoffman B, ed. A

Cancer Survivors Almanac: Charting Your Journey; The Na-

tional Coalition of Cancer Survivorship. Minneapolis, Minn:Chronimed Publishing; 1996.

3. Harpham, WS. After Cancer:A Guide to Your New Life. NewYork, New York: WW Norton and Company; 1994.

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