Fighting the Insurance Battle

But, as one of our favorite oncologists says: "When it's you and it works, it's 100 percent. When it's you and it doesn't work, it's 100 percent. Our job is to do the best we can to see to it that you're in the 100 percent where it works."

The information presented in this document summarizes the collective experience of several women who have successfully appealed an insurance company's decision to deny high-dose chemotherapy with stem cell rescue as an aggressive treatment for high-risk breast cancer. Obviously, the situations described herein apply only in the American health care system.

We are not in the business of giving medical or legal advice. For those kinds of information you should see thecompetent authorities in your area for those kinds of advice.

We do think that, as consumers who have been through this process, we have a unique perspective on some events. We hope that by passing on our perspective, you may be able to avoid some of the pitfalls the we have experienced.

In at least one case, the threat of legal action was sufficient to change the insurance company's decision. In at least one other case, the situation was decided as a result of a suit brought through the Equal Employment Opportunities Commission based on the Americans with Disabilities Act. And, there have been successes between.

That said, what we have found out so far follows below:

1. Does your medical insurance provider have the right to refuse treatment for breast cancer?
   The laws regarding health insurance have not been tested enough in the courts to give an absolutely definitive answer. These laws differ from state to state. Also, many different circumstances need to be taken into consideration. A summary of what we found needs to be done first and as early as possible follows.
2. What can I do if my insurance provider is "probably" going to deny benefits for treatment?
   • If it is at all possible, find a close friend or family member to organize your paperwork for you. You'll need somebody to track things as your appeal progresses. Doing this yourself while you're trying to deal with treatment issues is often very difficult. In the remainder of this document, we call this person your caregiver. You need to take extra care of yourself and have faith in your caregiver's ability to fight on your behalf. You cannot personally do this job while you are going through treatment.
   • Ask your caregiver to handle the responsibility of getting insurance certification.
   • Give your caregiver your power of attorney to act in your behalf.
   • Ask your oncologist and the clinic where you are being treated you
   • If you are given a letter of denial, go to next section.
3. How might I write an appeal to the insurance company?
   • Seek an attorney who is skilled in insurance litigation as well as disability and human rights issues BEFORE sending an appeal letter. Your appeal letter needs to be full of every conceivable issue that might exist. If something important is missing in the initial appeal letter, you may be denied the right to bring it up at a later date.
   • A list of attorneys who have successfully settled bone marrow and stem cell transplants can be obtained by writing to the Blood & Marrow Transplant Newsletter, 1985 Spruce Avenue, Highland Park, IL 60035. The phone number is 847.831.1913.
   • The BMT Newsletter, Inc. is extremely informative and can be found at www.bmtnews.org.
   • Contact your state legislators and your members of Congress. You can find out who your state legislators are by contacting the Legislature at your State Capitol. You can find the members of Congress representing your area by looking them up at Congress' web site. Let the people who make the laws in your state and in this country know that this is a serious problem for you. It is our experience that those that have the power to change laws are unpleasantly surprised not only that a breast cancer patient had to fight for treatment, but they are rather uneducated about breast cancer and treatment modalities. It seems that everyone knows someone diagnosed with breast cancer. Your representatives need to know that they now know somebody else with this disease.
   • Don't let an insurance provider tell you they do not cover treatment that is experimental. More than 1500 women are alive today who have received this treatment. Fully half of them would not be alive without this treatment. This is a civil rights issue.
4. What happens when I am given a 'final' denial letter?
   • Senator Ron Wyden, (D), Oregon has written a report on stem cell transplants. This report can be retrieved at: http://www.trannews.com/newsletr.htm.
   • Encourage your senator to contact Senator Ron Wyden's office at 503.726.7525 or 202.222.4321. Senator Wyden's staff has done extensive research in this area.
   • Another source for help: The Equal Employment Opportunity Commission. If your insurance policy is self-funded or paid for by your employer, and you believe it discriminates its coverage, do not hesitate to call the EEOC in your area. The Seattle and Detroit offices of the EEOC have recent experience (1997) with the issue of discrimination in the treatment of breast cancer.
5. What other resources can I use?
   • Public opinion is your friend. The media and press are powerful resources on your side and are nearly always interested in patients who are trying to obtain treatment that has been successfully used in other cases.
   • If there's an event related to breast cancer in your area, contact the sponsors and ask permission to have an area where you can publicize your situation for a letter-writing campaign to your members of Congress, to the insurance company denying coverage, and/or to the employer whose contract with the insurance company denying coverage is the source of the problem.

If you have additional questions, you may send email to:

or to:

You Are Not Alone is NOT in the business of giving medical, psycho-social, or legal advice. For those kinds of information, we strongly suggest that you contact competent professionals in your area.

We can tell you what worked for one or more of us that may help you and your support team.