Resources for People Coping with Breast Cancer

    Home Health Agencies and Medicare Beneficiaries

    Home health agencies terminating treatment of Medicare beneficiaries with chronic conditions is a recognized problem. 

    A home health agency may not be able to terminate treatment it is capable of providing without a doctor’s order.  Those receiving home health services and their family or caretaker should maintain close communication with the oncologist who ordered home health. Be sure to keep the doctor informed of developments so he/she knows what’s going on and doesn’t sign an order discharging the service.

    The Center for Medicare Advocacy, a nonprofit law firm provides a wealth of information on this subject.  It also provides legal and advocacy services to Medicare beneficiaries nationwide. 

    Denial of Health Coverage

    With new technology and treatments rapidly emerging, is it legal for a health insurance company to deny coverage to insured patients for certain treatments for cancer?

    Should cost be a factor in denying coverage for "experimental"  cancer treatments that may prolong a patient's life?

    Often the difference between life and death for cancer patients depends on the type of treatment and services their health insurance carrier will cover. Currently, some of the most innovative treatments are denied or routinely labeled as "experimental" by many insurance companies.

    Cancer patients are sometimes unaware of the options available to appeal decisions such as these. Others may not have the financial ability to do so. Unfortunately, women in these circumstances may seek expert advice only after it is too late, due to the timing of treatment or after they have exhausted the appeals that a knowledgeable advocate might have been able to pursue successfully.

    Delaying treatment for cancer can seriously affect a woman's chance of survival. In combating this disease, women and their families must be proactive. They should consider the avenues available to them that may help them receive the appropriate health care treatment and services prescribed by their treating physicians. It is their legal right!

    Ten Steps to Protecting the Legal Rights of People Coping with Cancer

    1. Read your health insurance policy carefully.
      If you have health insurance coverage through a private employer, obtain a copy of your "Health Insurance Summary" and a copy of the "Master Policy" as soon as possible. Your employer is required to provide you with a summary of what is covered within your health insurance plan. This is typically provided by your personnel or human resources department at the time you sign up for the coverage. However, the summary may not include a detailed description of covered benefits. It is essential that you thoroughly review both the summary and a copy of the master policy provided by the insurance company to your employer. Under federal law, your human resources department and/or the insurer must provide you with a copy of this policy.
    2. Determine if the treatment prescribed by your physician is covered by your policy.
      Check to see if there is an "exclusion clause" and/or an "experimental/ investigational" clause in the policy. This will give you some indication of whether the treatment you are seeking is excluded from coverage by your health insurance carrier. Also, look at the definition of what treatments are considered "medically necessary." In some cases, reconstructive surgery after a mastectomy is not considered a "medical necessity" but rather "optional" cosmetic surgery. It may not be specifically covered by your health insurance policy but, if it is not, you may wish to consult with a knowledgeable lawyer or other health consumer advocate.
    3. Find out about the appeals process under your insurance policy.
      If you have been denied coverage for a treatment, make sure that you meet all the deadlines set by your insurance carrier for appeals. In the first letter that denies coverage, check to see if your insurance company has given you a deadline by which an appeal or response from you must be received. If so, make sure you respond by the deadline. All communications should be in writing and sent by certified mail, return receipt requested.

      Information about making appeals should be included in your summary and master policy. If it is a lengthy policy, the appeals clause or procedure may be hard to find. It is typically near the end of the policy. Read your denial letter carefully. If it does not include a deadline or a description of the appeals procedure, write to your insurer and request that they immediately send you this information in writing. Sometimes a deadline for an appeal may exist without your knowledge. Stay on top of this and meet every deadline (always in writing)!
    4. Consult with an expert who is knowledgeable about health insurance law.
      It is essential that you have expert advice if you have been denied coverage for treatment or services prescribed by your treating physician. If your life or health is in jeopardy, consult a knowledgeable lawyer. While it is unfortunate, the reality is that a letter from a lawyer or a consumer advocate is often taken more seriously by insurers than a letter from the insured. Such a letter can often speed up a reversal of a denial of coverage.

      If you cannot afford a private lawyer, there are pro bono attorneys who may be able to provide free advice. In addition, you can seek counsel from some consumer advocacy groups. Just make sure the people from whom you seek advice are knowledgeable about health insurance. Ask about their education and experience handling these types of issues. Be leery of any "professional" who is unlicensed. In addition, do not wait until you have exhausted all of your appeals before consulting a lawyer or consumer advocate. Often, there is little that can be done after the appeals process has been exhausted.
    5. Plead your case in person to your insurance carrier.
      A personal appeal to an insurance company's "grievance committee" is often more effective than a written appeal. Find out who sits on the committee. Ask if you can bring your physician, lawyer or advocate with you. Having a knowledgeable professional with you can only help your case. It demonstrates that you are serious about protecting your rights and may help to speed up the appeals process.
    6. Personalize your written case with your insurance company.
      If you are not allowed to appear before a grievance committee, enclose your photograph, along with photographs of your family and friends, with any correspondence or materials that you send. You should also include letters from your family, friends and clergy. Submit anything that will help to personalize your case. Remember that you are fighting for your life and/or health! Your goal is to ensure that all the people reading your case realize the personal impact and consequences of their decisions!
    7. Obtain copies of your medical records.
      Make sure that you have copies of all your medical records and any correspondence between your physician and your health insurance carrier. Make sure that your physician continues to send you any correspondence between him or her and your insurance carrier. Your physician may charge you for copies of your medical records, but you are legally entitled to receive all your records.
    8. Document everything!
      Document your telephone calls. Each time you speak with a representative of your health insurance company, keep detailed records including the date and time, the person's name, his or her title, telephone number, his or her supervisor's name and what was discussed. If the representative made any promises or assurances, be sure you have an accurate record of exactly what was said. If someone is calling on your behalf, make sure he or she also keeps detailed notes.
    9. Ask your physician to advocate for your treatment.
      Obtain an affidavit or a notarized statement from your treating physician (and specialists who have been called in for consultation and/or treatment) that specifically describes your illness and what is required to treat your illness. This statement should also include a brief medical history and your prognosis with and without treatment. Your physician(s) should include current copies of whatever medical literature is available on your illness and proposed treatment with the statement. If possible, all of this information should be sent to your insurance carrier with your first written appeal. If a knowledgeable professional is helping you, make sure that you sign a written release of your physician/patient privilege so that the professional can discuss your treatment with your physician.
    10. Be prepared to fight!
      Your health may prevent you from being the best advocate for your own treatment. Enlist the help of a friend or family member if you are not prepared mentally or physically to fight for your appeal. Don't worry about being "nice" or pleasing other people. You may have to be rude, persistent and/or demanding. A knowledgeable legal professional can help you cut through the red tape and delays that you may face during an appeal. He or she will be able to file your case in court, if that appears to be the only recourse left to you following your appeals.

    For the past several years, the American Bar Association Commission on Women in the Profession and some state and local bar associations have been active in advancing public education initiatives on breast cancer research and policies. We have explored how certain issues such as managed care, federal funding of women's health research, and legal and public policies affect breast cancer patients.

    We are committed to educating the legal profession, the medical community, policymakers and the public about the range of legal issues affecting women's health, and the role they can play in helping breast cancer patients. Our Cancer Legal Advocacy Project is an important first step toward this goal.

    Cancer Advocacy Pro Bono Legal Referral Services

    Atlanta Legal Aid Society, Inc.
    151 Spring Street NW
    Atlanta, GA 30303
    (404) 614-3969

    The Cancer and ALS Legal Initiative is an outgrowth of the ALS AIDS Legal Project. The initiative was established after its founders realized that many of the issues faced by persons living with life threatening illnesses are often the same. They provide free legal assistance to low-income persons living with cancer in the five county metro Atlanta region (Fulton, Dekalb, Cobb, Gwinnett and Clayton). They specialize in issues such as employment discrimination, employment benefits, health insurance, life insurance, long and short term disability benefits, Social Security benefits, veterans benefits, food stamps, TANF, Medicare, Medicaid, COBRA, HIPAA, FMLA, consumer issues, debt issues, landlord/tenant, fair housing, and wills/advance directives.

    Cancer Legal Resource Center
    Disability Rights Legal Center
    919 South Albany Street
    Los Angeles, CA 90015-0019
    Phone: (213) 736-1455
    Toll Free: 866-843-2572
    Fax: 213-736-1428
    TDD: 213-736-8310

    The Cancer Legal Resource Center (CLRC) is a program of the Disability Rights Legal Center. The CLRC provides free and confidential information and resources on cancer-related legal issues to cancer survivors, caregivers, health care professionals, employers, and others coping with cancer.  The CLRC has a national, toll-free Telephone Assistance Line (866-THE-CLRC) where callers can receive free and confidential information about relevant laws and resources for their particular situation. Members of the CLRC's Professional Panel of attorneys, insurance agents, and accountants can provide more in-depth information and counsel to CLRC callers.  The CLRC also conducts a national education and outreach campaign through seminars, clinics, conferences, and attendance at cancer community events, on cancer related legal issues, such as employment, insurance, access to quality care and government benefits, navigating managed care, genetic discrimination, estate planning, and consumer rights.

    Cancer Legal Services Project
    Volunteer Legal Services Program
    The Bar Association of San Francisco
    465 California Street, Suite 1100
    San Francisco, CA 94104-1826
    (415) 989-1616

    Cancer Legal Services Project provides free services directly to low-income people with cancer. Intake staff provide information and referrals to attorneys who are sensitive to the needs of cancer survivors and are specially trained in meeting survivor's needs. They provide services to anyone in the San Francisco Bay Area.

    The Judges And Lawyers Breast Cancer Alert (JALBCA)
    1324 Lexington Avenue, PMB 324
    New York, NY 10128
    (212) 683-6630 (Hotline)
    (212) 289-9720 (Office)

    JALBCA implements programs on a volunteer basis to bring information to the community concerning early diagnosis and treatment of breast cancer. Its current projects include legislative position statements, a hotline for members of the legal community to speak with member judges and attorneys who are breast cancer survivors, providing pro bono legal consultations to people who believe they have been discriminated against in the workplace because of cancer, and programs to train colleagues to represent cancer patients on insurance reimbursement matters.

    Legal Advocacy for Cancer Patients at the Temple Legal Aid Office
    1719 N. Broad Street
    Philadelphia, PA 19122-6098
    (215) 204-1800

    The Legal Advocacy for Cancer Patients attorney and advocate services are free and available to all cancer patients and those financially responsible for someone who has been diagnosed with cancer and lives in Philadelphia, Pennsylvania. The program founder, Nancy Wimmer, is a graduate of Temple University School of Law, and cancer survivor.

    Legal Information Network for Cancer (LINC)
    P.O. Box 337
    Richmond, VA 23218
    (804) 644-LINC (5462)
    (877) 644-LINC (toll-free)
    (804) 644-5469 (fax)

    Legal Information Network for Cancer was founded by two breast cancer survivors, who are attorneys. LINC assists cancer patients with the often difficult business side of cancer. Through its network of volunteers, LINC helps cancer patients in central Virginia resolve problems with insurance coverage, employment, and creditors so patients can focus their energies on getting well rather than worrying about how to pay for needed medical treatments or how to support their families. When lawyers are needed, LINC has a network of referral attorneys who provide services on a sliding fee scale, based on a patient's ability to pay.

    To Life!
    410 Kenwood Avenue
    Delmar, NY 12054
    (518) 439-5975
    (518) 475-9141 (fax)

    To Life provides breast cancer education and support to help those concerned about or living with breast cancer to take control of their lives. Educational programs are held on topics such as the latest breast cancer treatments, understanding your pathology report, exercise and nutrition, life after treatment, osteoporosis, clinical trials, workplace discrimination and complementary therapies.

    The Women's Advocacy Project, Inc.
    PO Box 833 Austin, TX 78767-0833
    1-888-325-7233 or Austin (476-5386)

    The Legal Assistance Line for Texans with Breast Cancer is a part of the Women's Advocacy Project. With support from the Susan G. Komen Breast Cancer Foundation, the Women's Advocacy Project has established a legal hotline that offers assistance for breast cancer survivors. Callers can get assistance with employment, income & family issues through the hotline.

    Young Survival Coalition
    61 Broadway-Suite 2235
    New York, NY 10006
    (646) 257-3022

    If your state does not have a cancer program listed above, please click here for further information.

    Getting or Keeping Health Insurance After Diagnosis

    Losing health insurance coverage during a serious illness such as cancer is a personal disaster that can be hard for a cancer patient to avoid. Usually an existing health insurance policy cannot be changed or canceled due to diagnosis or treatment of cancer. The exceptions would be when the premium has not been paid, or the insurance was obtained through fraud, or the change in the policy applies to all people insured under the policy, not just those diagnosed with breast cancer. Susan Berke Fogel and Paula D. Pearlman, California Women's Law Center, Surviving the Legal Challenges: A Resource Guide for Women with Breast Cancer 36, 1998. However, breast cancer may lead to job loss or divorce, situations that can result in loss of insurance coverage.

    The Consolidated Omnibus Budget Reconciliation Act of 1986 (COBRA) provides a way to retain health insurance, even after job loss or divorce from a spouse who was the covered employee. 29 U.S.C. §1161 et seq. Under COBRA, a recipient of group health insurance benefits who experiences a "qualifying event" is entitled to up to 18, and sometimes 36, months of continued coverage under the group plan. Qualifying events are: 1) when the covered employee reduces her work hours and thus loses her right to have her employer pay the premiums; 2) when the covered employee leaves her job for any reason other than being fired for gross misconduct; 3) when the covered employee dies (if there are dependents who can, and wish to, pursue a claim; 4) when a covered spouse becomes divorced or legally seperated from an employee (note there may be exceptions for court ordered coverage); 5) when the covered employee becomes eligible for Social Security and Medicare; or 6) when the employer files for bankruptcy. Susan Berke Fogel and Paula D. Pearlman, California Women's Law Center, Surviving the Legal Challenges: A Resource Guide for Women with Breast Cancer 43, 1998. If, within the first 60 days of COBRA coverage, the patient is determined to be disabled under the Social Security Administration's standards, then the patient is entitled to an additional 11 months of coverage for a total of 29 months.

    It is important for a cancer patient to maintain continuous health insurance coverage so that she will not have to wait for treatment if her insurance status changes. The dramatic decrease in survival rates of cancer patients, when treatment is not started before the cancer has metastasized, underlines the crucial importance of timely treatment. Many insurance policies have an exclusionary period for the newly insured that excludes expenses for treatment of a preexisting condition for a specified time, which can be as long as 18 months. L. Susan S. Slavin, Esq. Cancer Advocacy Project, New York, Outline of Speech Before the Association of the Bar of the City of New York, Mar. 3, 1999. Under The Health Insurance Portability and Accountability Act of 1996 (HIPAA), the exclusionary period can be reduced or eliminated (depending on the time during which the person had previous coverage), if there was not a break in insurance coverage of 63 days or more. 29 U.S.C. §1181, 1182. A "preexisting condition" is a condition for which medical advice, diagnosis, care, or treatment was recommended or received during the 6 months prior to the start of the insurance. Id.

    Payment for Breast Reconstruction Is Mandated by ERISA

    The amendments to ERISA provided for by the Women's Health and Cancer Rights Act of 1998 provide that health insurers who provide coverage for mastectomy must also provide coverage for breast reconstruction. 29 U.S.C. §1185b. Furthermore, "[n]othing in this section shall be construed to preempt any State law in effect on the date of enactment…with respect to health insurance…that requires coverage of at least…reconstructive breast surgery otherwise required under this section." 29 U.S.C. §1185b(e)(1). Thus, state laws mandating more complete coverage than this law will not be preempted by ERISA.

    Dealing with Debt

    ABA Cancer Advocacy Initiative

    A breast cancer patient may have to deal with debt, but should not have to put up with illegal, harassing debt collection practices. These include: 1) contacting a debtor at unusual or inconvenient times or places; 2) contacting a debtor directly when she has hired an attorney to represent her; 3) contacting a debtor at work when her employer forbids such communications; 4) threatening a debtor with violence; 5) using obscene or profane language; or 6) telephoning a debtor repeatedly to harass her. Susan Berke Fogel and Paula D. Pearlman, California Women's Law Center, Surviving Legal Challenges: A Resource Guide for Women with Breast Cancer 65, 1998. If a patient has a steady income, a good option for discharging debt is to work out a payment plan with creditors. If this is not possible, filing for bankruptcy discharges most debts. However, this will affect the debtor's future credit rating. It is a serious step that should not be taken lightly. Susan Berke Fogel and Paula D. Pearlman, California Women's Law Center, Surviving the Legal Challenges: A Resource Guide for Women with Breast Cancer 66 - 71, 1998.