Breast Cancer Resource Directory of North Carolina

There are a number of legal issues that breast cancer patients may want to know about. These legal issues generally concern health insurance, patient’s rights, treatment rights, life planning and employment rights.

LEGAL ISSUES

Legal Issues and Health Insurance
A health insurance company’s decision about insurance coverage for breast cancer treatment and services is often based on the cost of the service, rather than on what the patient’s doctor prescribes as medically appropriate and necessary. Most health insurance companies are businesses committed to their own interests. You must be equally prepared to represent and protect your interests.

If you have been denied coverage by your health insurance provider for breast cancer treatment or services prescribed by your doctor, you can appeal the decision.

Breast cancer patients are sometimes unaware that they can appeal an insurance company’s decision to deny coverage. Also, women in this situation may seek expert advice too late—after they have exhausted the appeals that a knowledgeable advocate or lawyer may have been able to pursue successfully. If the appeal was related to treatment, and a woman is not able to pay out-of-pocket, this situation could affect her survival.

If you have been denied coverage and your life or health is in jeopardy, you should consider consulting a lawyer who is knowledgeable about health insurance law. A letter from a lawyer or consumer advocate is often taken more seriously by health insurance companies than a letter from a patient. These letters can sometimes speed up reversing a denial of coverage.

If you cannot afford a lawyer, look for a pro bono attorney (attorneys who provide their service at no cost or at reduced cost) or contact a consumer advocacy group. See Resources at end of this section.

See Insurance Issues for more tips about how to appeal a denial of coverage with a health insurance company.
Patient Rights

Patient’s Bill of Rights. The Patient’s Bill of Rights was adopted by the American Hospital Association in 1973 and revised in 1992. This document describes the rights of patients and the responsibilities that hospitals and healthcare providers have to support these rights and deliver effective health care. Most hospitals should have a copy of the Patient’s Bill of Rights or contact the American Cancer Society at 800.ACS.2345 or www.cancer.org.

Informed Consent. Prior to performing most procedures, your physician will ask you to sign an Informed Consent form. (Your doctor will explain what the procedures are and the risks and benefits.) By signing the form, you agree to the procedures, and that you understand the risks and benefits. You should have an opportunity to ask all of your questions. Your doctor will also explain what choices you have regarding available treatments. Make sure you read the consent form very carefully before you sign it. If you do not agree with any part of it, cross out that part and initial it. When you sign the form, you are giving permission for your doctor to treat you. You are not absolving your doctor of negligence.

Access to your medical record. You have a right to obtain an updated copy of your medical record. You will have to sign a release form to get that copy. The person who works in your doctor’s office can help you fill out the papers. You might have to pay a small fee to obtain your records. It is a good idea for you to keep current copies of all your medical records.

BREAST CANCER TREATMENT RIGHTS

The Women’s Health and Cancer Rights Act of 1998 (WHCRA)
This federal law requires health insurance plans to cover reconstructive surgery after mastectomy, as well as implants and other work needed to make the other breast symmetrical. The law applies both to persons covered under group health plans and to persons with individual health insurance coverage.

WHCRA does not require health plans or issuers to pay for mastectomies. If a health plan or health insurance company chooses to cover mastectomies, then the plan is generally subject to WHCRA requirements. If WHCRA applies to you, and if you are receiving insurance benefits for a mastectomy and plan to have breast reconstruction, coverage must be provided for:

Reconstruction of the breast on which the mastectomy has been performed;
Surgery and reconstruction of the other breast to produce a symmetrical appearance;
Prostheses (e.g., breast form); and
Treatment for physical complications of the mastectomy, including lymphedema.

Breast and Cervical Cancer Treatment Act (2000)
This law guarantees medical treatment to low-income, uninsured women screened for and subsequently diagnosed with breast or cervical cancer through the North Carolina Breast and Cervical Cancer Control Plan (BCCCP) program. BCCCP is a program providing free mammograms, clinical breast exams and other tests to income-eligible women through local health departments. It is also available in other states. For more information about NC BCCCP, see Financial and Other Assistance.

Other laws passed in North Carolina

Health insurance companies must pay for mammograms and Pap tests. This does not cover all health insurance providers. Check with your insurance company or employer.
You and your doctor, rather than your health insurance company, can decide how long you will stay in the hospital after a mastectomy.
Health insurance companies or employers are not allowed to deny you coverage or employment based on genetic information.

Life Planning

All adults should designate the person(s) who will make decisions for them if they become unable to act on their own behalf. This is called an advance directive, which is a legal document that allows people to convey their decisions about end-of-life care ahead of time. The purpose of advance directives is to let your loved ones and your healthcare providers know what you want while you are able to communicate your preferences for care. See Hospice Care & End of Life Issues for more information. Below are a few other legal documents that assist in life planning.

Last Will and Testament (Will). A Will is a personal plan instructing your survivors or beneficiaries about your wishes. Every adult should have a legal Will. You can be as specific or as general as you wish. Some terms to address in the Will may include provisions for who will take care of your children and who will receive your assets after you die. This is a legal document that should be written with the aid of a lawyer. It can be changed at any time. In North Carolina, Wills should be witnessed by two individuals (unrelated to the person making the Will) and must be notarized in the presence of all parties.

Trusts and Estate Planning. A trust is a legal arrangement under which you, as the grantor, transfer money or other property to a trustee. The trustee will hold and eventually distribute the property for the benefit of one or more beneficiaries (people receiving the benefits). The trustee manages the property placed in the trust and follows your instructions concerning the management and distribution of the property.

Trusts can be broadly categorized as either testamentary trusts or living trusts. A testamentary trust is created within a Will and takes effect only at death. A living trust is a trust that you put in place during your lifetime.

EMPLOYMENT ISSUES

Many people are already in the workforce when they are diagnosed with cancer. For many, work is a source of fulfillment and financial security. As long as you are able to work, and you are not compromising your health during treatment, there is no reason for you to feel that you should stop.

Tips for Working During Cancer Treatment
Telling co-workers. In some settings, co-workers will react to your cancer diagnosis and absences with understanding and helpfulness. Other co-workers may feel uncomfortable around you because of your cancer, or they may resent taking on extra duties because of your absence. How open you are with your co-workers about your condition is a personal decision. In some environments, it won’t benefit you to share details. However, many women with breast cancer say they are glad they shared information about their illness with people at work.

Work schedule, calendar and duties log. You may want to make logs of your usual work schedule and duties, and refer to it when organizing any flextime, shifted duties or time off. You may also want to make a detailed list of job duties so that you are able to direct others in handling situations and procedures while you’re out of the office.

Worries about discrimination. Even though the public’s understanding of cancer is generally improving, some prejudices and wariness remain in the workplace. This may be in part due to competitiveness and economic pressures and fears. If this situation arises, you may want to keep records of your contacts with office personnel, including the names of people with whom you have spoken about your illness, the date and place you spoke, and the information you received. It’s also a good idea to keep documentation of your job performance evaluations.

Reasonable accommodations. Employers are not required to lower standards in order to accommodate any one employee. However, an employer is required to reasonably accommodate a qualified applicant or employee with a disability unless the employer can show it would be an undue hardship to do so. Examples of reasonable accommodations may include:

providing or modifying equipment or devices
restructuring a job
offering part-time or modified work schedules
reassigning an employee to a vacant position
adjusting or modifying examinations, training materials or policies
providing readers and/or interpreters
making the workplace readily accessible to and usable by people with disabilities.

Tips on Returning to Work After Cancer Treatment
If you are able to return to work shortly after your treatment, you may find that it helps you maintain your identity and even boost your self-esteem. Cancer can be isolating, and it can be a comfort to be around other people. Check with your employer about options such as flextime, job-sharing or telecommuting if it will help you perform your duties. Some people with cancer who are re-entering the workforce may want to seek counseling to help readjust.

When writing a resume, focus on skills and experiences rather than chronology if there was a long period of time when you were out of work due to your illness. Rather than organizing your resume by dates of employment, focus on areas of expertise and experience.

When going for an interview, there is no need to volunteer your history of cancer. It is not legal for an employer to ask you questions about your health that do not directly relate to job functions. Consider your cancer history as any other piece of personal information, which is generally not appropriate to share during a job interview. However, if the question arises, be truthful about your medical history, especially on insurance forms.

If you are seeking employment, if may be helpful to try large companies that are more likely to have encountered employees with situations similar to your own. In addition, it may be helpful to ask your doctor for a letter that supports your current situation and ability to work. It may help employers feel more secure about hiring you if an issue relating to your health arises.

Focus on your current health. If your current employer or potential employer is aware of your cancer history, emphasize your current abilities and skills, rather than dwelling on what you were or were not able to do in the past.

Employment Discrimination
You have the same rights as anyone else in the workplace and should be provided equal opportunities, regardless of whether or not you talk about your cancer with people at work. Hiring, promotion and treatment in the workplace should depend entirely on ability and qualifications. As long as you are able to fulfill your job duties, you cannot be fired for being sick. Also, you should not have to accept a position you would not have considered before your illness.

Some common forms of discrimination are refusing to hire, demoting or denying promotions, not allowing time off for medical appointments, or suggesting that the person with cancer would be “better off” not continuing to work.

Questions To Consider
If you notice that your boss or co-workers are treating you differently, consider the questions below. Each time something happens, write down when it happened, why and who was involved. If you ever need to consult a lawyer, you will already have a record.

Have your responsibilities been reduced?
Have you been transferred without anyone telling you in advance?
Have you had to take a medical exam that is unrelated to your job responsibilities?
Have your insurance benefits been cut, changed or discontinued?

If you suspect discrimination, consider following these steps:
Work with your supervisor or human resources department to resolve the problem informally. Under the Americans with Disabilities Act, employers are required to make reasonable accommodations. If you took this issue to court, the judge would ask that you and your employer try to work it out this way first. Is flextime an option? Are there accommodations you can suggest to your employer that will make your work life easier? Open communication between you and your employer about your needs and their needs may help to resolve what might otherwise turn into an unpleasant situation.

Get support from others. Perhaps a local cancer group or health professional would be able to provide education for your employer about cancer and workplace issues. You may want to speak to an attorney specializing in workplace discrimination who can advise you on how to proceed. If there are other cancer survivors in the workplace, see how they have dealt with the issue.

Keep written records of actions. Write down dates and times of discriminatory actions and conversations that you have with your employer. Be precise and detailed in your notes.

Your rights are protected by the Americans with Disabilities Act (if your company has more than 15 employees). Contact the Equal Employment Opportunity Commission (EEOC) if you wish to file a complaint. Be aware of filing deadlines. You have 180 days from the date of discrimination to file your complaint formally. That could be the date you were fired, date you were denied promotion, or the date your job responsibilities changed. After the 180-day deadline has passed, it is difficult to file a complaint.

Think carefully about your goals. If you do decide to take legal action, consider the consequences of such an action. Ask yourself whether the sometimes long and drawn-out process of a lawsuit is worth it, and how you would feel if you lost the decision. It is important to examine these issues for yourself carefully and understand the drawbacks of what you are getting into. It may also be possible for you to let go of the anger and move on.

Information in the employment section was adapted in part from Tips on Returning to Work After Cancer Treatment, American Cancer Society (800.ACS.2345 or www.cancer.org) and Ways to Advocate for Yourself or Someone Else Who Has Cancer, CancerCare, Inc. (800.813.HOPE or www.cancercare.org).

FEDERAL LAWS THAT CANCER PATIENTS MAY WANT TO KNOW ABOUT

While treatment and recovery concerns are likely to be at the top of the priority list when you learn you have breast cancer, you might want to be familiar with other laws that protect your rights.

Health Insurance Portability and Accountability Act (HIPAA)
The federal government passed this Act in 1996 to help improve health insurance coverage for people with pre-existing conditions who change jobs or lose health insurance coverage. Before HIPAA was passed, many people were excluded from health insurance coverage because of previous health problems, even if the problems occurred many years earlier.

HIPAA ensures that people seeking group health insurance will have full coverage within a relatively short period of time. If you have had breast cancer or another serious medical condition, it is important to avoid a break in coverage of 63 days or more. You can apply for COBRA continuation coverage to bridge the gap between jobs. If a break in coverage occurs, you might have to wait six months or more before your insurance will cover you. See Insurance Issues on page 140 for more information.

A second part of the HIPAA bill deals with the protection of privacy of medical information. Some of the recent paperwork changes you may have noticed in hospitals or doctor’s offices (more forms to sign before receiving care) relate to this part of HIPAA. The new laws guarantee the right of patients to see and obtain copies of their medical records and request corrections if they see mistakes. They also regulate and protect access to medical information (particularly computer information) by outsiders.

Americans with Disabilities Act (ADA)
This federal law states that an employer cannot refuse to hire or refuse to continue to employ a person with a disability (including cancer), as long as that person is able and qualified to do the job. The law applies to any private employer, including state and local governments, with 15 or more employees. The ADA requires employers to treat all employees the same. The law applies to all aspects of the employment process: the job application procedure, hiring, promotion, discharge, employee compensation, job training, leaves of absence, sick leave, other leave and fringe benefits.

The Federal Rehabilitation Act (FRA)
The FRA applies the standards set by the ADA to employees of the federal government.

Family and Medical Leave Act of 1993 (FMLA)
This federal law was passed to make sure people have time off from work to take care of themselves or a family member in need. The law requires some employers to provide up to 12 weeks of unpaid, job-protected leave to eligible employees for certain family and medical reasons. FMLA applies to employers with 50 or more employees.

For more information about the above laws, see the Resources below.

RESOURCES

Organizations

Aging With Dignity
888.5.WISHES
www.agingwithdignity.org
Advocates for the needs of elders and their caregivers, with emphasis on improving care for those at the end of life. Offers the Five Wishes advance directive (legally valid in North Carolina).

American Bar Association Commission on Women in the Profession
312.988.5715
www.abanet.org/women
Sponsors the Breast Cancer Legal Advocacy Initiative, offering information, resources and breast cancer pro bono (free) lawyer referrals throughout the country. Publishes the brochure, “Ten Steps to Protecting the Legal Rights of Breast Cancer Patients.”

American Cancer Society (ACS)
800.ACS.2345 or 866.228.4327 (TTY)
www.cancer.org
Provides information and services for all forms of cancer, diagnosis, treatment and many other topics. Free educational materials available on a wide variety of topics relating to cancer, including: insurance, legal matters and employment discrimination.

CancerCare
800.813.HOPE (800.813.4673)
www.cancercare.org
Provides free, professional telephone counseling from trained social workers to cancer patients and their family members. Offers information about employment discrimination, rights in the workplace, re-entering the workforce.

Cancer Legal Resource Center
Western Law Center for Disability Rights
213.736.1455 or 213.736.8310 (TDD)
http://wlcdr.everybody.org/special-programs/cancer.html
Provides information and educational outreach on cancer-related legal issues to people with cancer, their families, friends and employers. Provides prompt, confidential information to callers.

Caring Connections
703.837.1500 or 800.658.8898
www.caringinfo.org
Helps patients and families participate in
end-of-life decision making. Has educational
booklets and videos about end-of-life issues. Provides state-specific living wills and medical powers of attorney.

Equal Employment Opportunities Commission (EEOC)
704.344.6682 or 800.669.4000
800.669.6820 (TTY)
www.eeoc.gov
Has information about employment, job discrimination, Federal laws such as the Americans with Disabilities Act, how to file a charge of employment discrimination, and more. Hotline is also for Spanish speakers.

Job Accommodation Network
800.ADA.WORK (800.526.7234)
www.jan.wvu.edu
An international toll-free consulting service that provides information about accommodating people with disabilities on the job and their employability.

Judges and Lawyers Breast Cancer Alert
212.289.9720 or 212.759.6630 (Hotline)
www.jalbca.org
Provides relevant breast cancer information and peer support hotline for legal professionals.

National Breast Cancer Coalition/Fund
202.296.7477 or 866.624.5307 (to order Guide)
www.stopbreastcancer.org
Advocates for laws on behalf of breast cancer patients. Publishes the Guide to Quality Breast Cancer Care, which includes information on patient rights and insurance.

National Cancer Institute’s Cancer Information Service
800.4.CANCER (800.422.6237)
www.cancer.gov
Has information about employment and legal rights in “Facing Forward: Life after Cancer Treatment.”

National Coalition for Cancer Survivorship
877.NCCS.YES (877.622.7937)
www.canceradvocacy.org
Offers free booklets about cancer, health insurance and employment rights for cancer survivors.

National Partnership for Women and Families
202.986.2600
www.nationalpartnership.org
Has employment information, also available in Spanish. Offers free booklets on HIPAA and the Family and Medical Leave Act.

North Carolina Bar Association
919.677.8574 or 800.662.7660
www.ncbar.org
Offers the North Carolina Lawyer Referral Service to help find a lawyer (see www.ncbar.org/public/lrs). Can also refer for pro bono (free or reduced cost) lawyers. Spanish language services available.

Patient Advocate Foundation (PAF)
800.532.5274
www.patientadvocate.org
Serves as an active liaison between the patient and their insurer, employer and/or creditors to help with insurance issues, job discrimination and debt crisis matters relating to their diagnosis. Offers free booklets (available in Spanish) about job discrimination and health insurance appeals. Also has a co-pay assistance program.

U.S. Department of Justice
800.514.0301 or 800.514.0383 (TDD)
www.usdoj.gov/crt/ada/adahom1.htm
Comprehensive information about the Americans with Disabilities Act.

Books and More

Be Prepared: The Complete Financial, Legal, and Practical Guide for Living with a Life-Challenging Condition, by David S. Landay (2000). Written by an attorney with experience in cancer matters. Offers information about health and life insurance, disability, job issues, financial and end-of-life planning.

Surviving the Legal Challenges: A Resource Guide for Women with Breast Cancer (1998). Free to women with breast cancer, this booklet has information (some specific to California) about legal rights for women with breast cancer. Contact the California Women’s Law Center 213.637.9900 or www.cwlc.org.

Web Sites

Cancer and Careers
www.cancerandcareers.org
A resource for working women with cancer and their employers, coworkers and caregivers.

North Carolina Hospital Association
www.ncha.org
Offers living wills, health care powers of attorney, and the Patient’s Bill of Rights online. Click on Public, then see menu items at left. Also available in Spanish.

Y-ME - Breast Cancer in the Workplace
www.y-me.org/diagnosed/insurance/php
Brief discussion of issues and concerns of breast cancer survivors and the workplace.

Breast Cancer Resource Directory of North Carolina | Third Edition 2006 - 2007

Copyright 2006, Jamie Konarski Davidson, Women Helping Women, Elizabeth Mahanna, North Carolina Institute for Public Health, and UNC’s Lineberger Comprehensive Cancer Center. Portions of the Breast Cancer Resource Directory of North Carolina may be copied without permission for educational purposes only. The Breast Cancer Resource Directory of North Carolina is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through the Breast Cancer Resource Directory of North Carolina should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, you should consult your healthcare provider.