Survivorship Series: Your Financial Future

Understanding Lymphoma and Chronic Lymphocytic Leukemia (CLL)

Introduction

An individual is considered a cancer survivor from the time of diagnosis throughout treatment and the remaining years of life.

There are an increasing number of lymphoma survivors each year. Current data show 88 percent of patients with Hodgkin lymphoma (HL) and 73 percent of patients with non-Hodgkin lymphoma (NHL) are still alive five years following their diagnosis. Better diagnostic tools and more effective treatments are associated with improved survival rates; however, the challenge now facing many survivors is how to achieve long-term quality of life after treatment has ended.

Cancer can dramatically affect your financial security. You may find yourself burdened with medical debts and reduced income. This may make it hard to pay bills on time, which can negatively affect your credit score and your ability to get a loan or access medical treatments in the future. However, there are steps that survivors can take to address these financial issues. Below are some ways survivors can pursue a more financially secure future.

Securing Your Financial Future

Keep track of all claims and paperwork (letters of medical necessity, bills, receipts and requests for sick leave), phone conversations with your insurance provider, previous coverage (“certificate of creditable coverage”), and unreimbursed medical expenses (may be used for tax purposes). There are printable worksheets you can use to get these matters organized (visit lls.org/managing-your-cancer).

If you expect to run into financial difficulties, reaching out to the people involved (hospital billing departments, creditors, landlords, utilities or mortgage companies) and working out payment plans early on can be helpful to avoid a negative impact on your credit score. You can also consider talking to your healthcare team about switching to generic drugs, stopping non-essential drugs or joining prescription assistance programs. You may also consider reaching out to free credit counseling services that will design personalized plans to help you manage your debt. If you find this option is right for you, make sure to use services credited by the National Foundation for Credit Counseling (visit nfcc.org)

Credit reporting agencies are required by law to wait 6 months (180 days) before including medical debts on your credit report. You can use this waiting period to handle pending disputes with your insurance company and take care of delayed payments. If you experience a denial of coverage by your insurance, it is important that you know how to file an appeal. Online resources from TriageCancer will help you navigate this process (visit triagecancer.org/cancer-finances-appeals).

Additional resources for cancer survivors requiring financial help include:

Triage Cancer: visit triagecancer.org/gethelp and triagecancer.org/cancer-finances
Medicine Assistance Tool: visit medicineassistancetool.org
CancerCare: call 800-813-HOPE [4673] or visit cancercare.org
Patient Advocate Foundation: call 800-532-5274 or visit patientadvocate.org
Drug manufacturers and other institutions may offer financial assistance programs for certain drugs that are too expensive. Ask your healthcare team or pharmacy to determine what is available to you.

Protecting Your Financial Assets

Due to the financial impact of lymphoma, it is important that you and your loved ones take steps to preserve your finances. This means making a plan to protect your investments, insurance, emergency and disability planning, retirement and other needs. It is important that you tailor the financial plan to your circumstances. Because financial issues can be ongoing after treatment has ended, having someone experienced in handling financial concerns related to a cancer diagnosis can be especially beneficial in developing a plan that works for a survivor’s individual and specific needs. Your attorney, accountant, financial planner or insurance consultant may help you gather information and provide counseling in this process. Other suggested resources for finding a financial planner include:

Certified Financial Planner Board of Standards (CFP Board): call 800-487-1497 or visit cfp.net
Financial Planning Association: call 800-322-4237 or visit
financialplanningassociation.org
Society of Financial Service Professionals: call 800-392-6900 or visit national.societyoffsp.org

Questions to Ask A Financial Planner

Before meeting with a financial planner, write down questions regarding your concerns and goals. Some specific questions to consider asking the financial planner include:

Have you ever worked with a client who has cancer?
How would your financial advice for me be different from a typical client?
What are some of the financial issues you see regarding my specific situation?
Are you familiar with all aspects of medical coverage, disability benefits, life insurance, and viatical settlements (a provision in a life insurance policy that allows an insured person with a life-threatening illness to redeem the policy for an amount close to its face value)?
Are you familiar with the employee rights of a cancer patient?
How are your fees determined (e.g., flat fee, hourly fee, commission from the sale of financial products, fee plus commission)?

Lymphoma Care Plan

Keeping your information in one location can help you feel more organized and in control. This also makes it easier to find information pertaining to your care and saves valuable time. The Foundation’s Lymphoma Care Plan document organizes information on your health care team, treatment regimen, and follow-up care. You can also keep track of health screenings and any symptoms you experience to discuss with your health care provider during future appointments. The Lymphoma Care Plan document can be accessed by visiting lymphoma.org/publications.

Patient Education Programs

The Foundation also offers a variety of educational activities, including live meetings and webinars for individuals looking to learn directly from lymphoma experts. These programs provide the lymphoma community with important information about the diagnosis and treatment of lymphoma, as well as information about clinical trials, research advances and how to manage/cope with the disease. These programs are designed to meet the needs of a lymphoma patient from the point of diagnosis through long-term survivorship. To view our schedule of upcoming programs, please visit lymphoma.org/programs.

Lymphoma Resource Center

The Foundation’s Lymphoma Resource Center staff are available to answer your general questions about lymphoma and treatment information, as well as provide individual support and referrals to you and your loved ones. Callers may request the services of a language interpreter. The Foundation also offers a one-to-one peer support program called the Lymphoma Support Network and clinical trials information through our Clinical Trials Information Service. For more information about any of these resources, visit our website at lymphoma.org, or contact the Lymphoma Resource Center at (800) 500-9976 or [email protected].

Para información en Español, por favor visite lymphoma.org/es. (For Information in Spanish please visit lymphoma.org/es).

Understanding Lymphoma and Chronic Lymphocytic Leukemia (CLL) is published by the Lymphoma Research Foundation for the purpose of informing and educating readers. Facts and statistics were obtained using published information, including data from the Surveillance, Epidemiology, and End Results (SEER) Program. Because each person’s body and response to treatment is different, no individual should self-diagnose or embark upon any course of medical treatment without first consulting with his or her physician. The medical reviewer, the medical reviewer’s institution, and the Foundation are not responsible for the medical care or treatment of any individual.

The Lymphoma Research Foundation appreciates the expertise and review of our Editorial Committee and our reviewer:

Reviewer:

Joanna Fawzy Morales, Esq.
CEO, Triage Cancer

Editoral Committee:

Co-Chair: Leo I. Gordon, MD, FACP
Robert H. Lurie Comprehensive Cancer Center of Northwestern University

Co-Chair: Kristie A. Blum, MD
Emory University School of Medicine

Jennifer E. Amengual, MD
Columbia University

Carla Casulo, MD
James P. Wilmot Cancer Institute

Shana Jacobs, MD
Children’s National Hospital

Patrick Conner Johnson, MD
Massachusetts General Hospital

Manali Kamdar, MD
University of Colorado

Ryan Lynch, MD
University of Washington

Peter Martin, MD
Weill Cornell Medicine

Lia Palomba, MD
Memorial Sloan Kettering Cancer Center

Tycel Phillips, MD
City of Hope

Pierluigi Porcu, MD
Thomas Jefferson University

Neha Mehta-Shah, MD, MSCI
Washington University School of Medicine St. Louis

Sarah Rutherford, MD
Weill Cornell Medicine