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Stem Cell Transplant:
A Companion Guide for Breast Cancer Patients

Considering Other Issues

Financial Concerns
Insurance Coverage
Future Directions
Conclusion

Financial Concerns
It should come as no surprise that stem cell transplant, and all that it entails, is costly. If you can anticipate expenses, you can plan out how they will be met. A preliminary list of expenses, other than those covered by insurance, might include:

Insurance Coverage
Although it's a secondary concern to your breast cancer treatment, the high cost of transplant must be addressed. Many health insurance companies now cover most breast cancer therapies, including stem cell transplants. The key question to be considered as you plan your care is whether your health insurer is in the majority and will provide coverage, or whether coverage is going to be a problem. The sooner this question is answered the better. Obtaining insurance approval may be time-consuming, difficult, and may require legal assistance. Make use of family and friends to help you manage this effort.

The transplant center will start the insurance approval process by sending your health-benefit insurer a letter requesting pre-approval of your treatment. The insurance company may request a complete history of your physical condition, a copy of the treatment protocol, the informed consent document, your laboratory and x-ray results, and your physician's recorded treatment recommendation. Make sure that these materials are sent out promptly, if requested.

Insurance companies sometimes delay a decision pending the results of early chemotherapy. At other times the companies need to be reminded that time is important. Repeat requests for pre-authorization should be mailed. Insurance issues must be resolved before admission for transplant. You cannot begin this process too soon.

The "paper trail" between your transplant center and your health insurer may be an essential part of a legal action if coverage is denied. Organize your own paper trail file. Encourage your transplant center to send detailed information and documentation supporting the treatment planned for you. The more evidence presented the better.

If pre-authorization of coverage is denied or is not quickly forthcoming, begin to educate yourself about your insurance coverage. Request a copy of your health insurance policy. This document is sometimes called a certificate or at other times an employee-benefit plan. The company and/or employer are required by law to make this document readily available to you. Call your employee benefits representative, your insurance company, or the person who sold you the insurance. If you have any difficulty getting a copy of the insurance coverage language, write a letter. Insurance companies generally want to avoid paper trails that reflect failure to provide information.

Legal problems arising from insurance coverage denials for breast cancer patients seeking stem cell transplant have received much media attention. Over the past decade women have won many dramatic lawsuits seeking transplant coverage for their care. The insurance climate is much improved and more encouraging today. But some companies persist in denying coverage, and claim that they will not include stem cell transplant as a benefit until the clinical trial results conclude that it is superior to conventional chemotherapy.

Insurance companies, generally, want to help patients. Often medical directors, who are physicians, make the decisions about what would be the best care. Approaching them as people who want to help is the way to begin.

If you receive a denial of coverage, time is of the essence. Many companies provide only a short period of time for an appeal. You will need to appeal directly to the insurer before you will be permitted to file a lawsuit.

A denial must be in writing. It should include information about how to appeal. If it does not, request that information (in writing). Don't panic. A "no" at this stage may really mean either "probably not," or "provide us with more information and we will reconsider." There is almost always room for more discussion. Although you may feel angry or hurt, don't be disheartened. There are ways to fight back.

Consider the reasons given for denial of coverage. Does the insurance company consider the transplant to be "experimental" or "investigative"? Is the denial based on a pre-existing condition? Is there some reason you are not entitled to certain benefits while others are? Involve your physician and transplant center. Often insurers will change their minds once provided with strong documentation from doctors.

If your insurance is paid for by an employer, find out if the employer can and will make efforts to help. Sometimes the employer may pay for the treatment rather than hassle with the insurer. At other times, the employer can put pressure on the insurer, particularly if the employer spends a lot on health-benefit coverage.

Most importantly, do everything required by the insurer to submit an appeal. Keep the time limits carefully in mind. They may be as short as 30 days. Successful strategies for appeal include the following:

  • Request that your physician intervene and send a detailed report, medical articles, scientific information, and other materials that are responsive to the reasons for denial
  • Keep careful records of the paper trail you have developed, and do not be afraid to do your own research
  • Contact the patient advocate office or a BMT social worker at your transplant center
  • Ask your employer to assist you if your health coverage is through your employment or your spouse's employer
  • Seek information from organizations serving bone marrow transplant patients
  • Retain an attorney with expertise in this field to help you

More and more women with breast cancer are finding success in these insurance disputes. Do not give up (see Resource Listing).

If you are underinsured or have no coverage for transplant expenses, you may have to borrow funds or plan fund-raising activities. Family, friends, or your employer may offer help with these activities. Contact the BMT social worker. Request names of organizations that not only provide financial support but will help you plan strategies for raising funds (see Resource Listing). You may want to consider participation in a clinical trial as expenses are sometimes less.

Even if you have coverage, there may be expenses beyond those that your insurer will pay. This may be stressful, financially and otherwise, to you and your family. Circumstances vary. If you must hire childcare, this will add to the cost of your treatment. If you stop working, the household budget will probably have to change. Single moms may need to turn to family and friends for support and assistance more often.

If you are a Medicare or Medicaid patient, contact the treatment center's BMT social worker or finance services department to discuss your options. Medicare does not currently cover stem cell transplant for breast cancer patients. Medicaid approves coverage on an individual basis that is dependent on specific criteria. Your treatment center will help you to obtain approval.

Future Directions
As more is learned about breast cancer treatment, new strategies are being considered. Listed below are a few of the investigative/experimental treatments being studied. Consult your physician for further information.

Allogeneic Transplant
Allogeneic transplant uses stem cells from another person, related, unrelated or even from an umbilical cord. Theoretically, this source of stem cell is excellent because it is not contaminated by tumor. A few institutions are studying allogeneic BMT for some women with bone marrow that has been affected by breast cancer. Additionally, these allogeneic stem cells may carry an antitumor effect, which may eliminate any remaining cancer cells. However, allogeneic transplant carries a significantly higher risk of transplant complications than autologous transplant.

Anti-angiogenesis Agents
Tumors require a blood supply to live and grow. They produce angiogenesis factors that cause small blood vessels to grow into the tumor to support its growth. New compounds (anti-angiogenesis factors) may block this vessel growth, thereby starving the tumor of nutrients and oxygen. In the future, anti-angiogenesis agents may be used in combination with transplant, surgery, chemotherapy, or other treatments to eliminate the possibility of a recurrence.

Purging
Purging is an additional step in the bone marrow transplant procedure. It occurs on the day of the stem cell "harvest," prior to transplant. Through a special machine that serves as a kind of filter, diseased stem cells are separated out. The stem cells returned to the patient have a reduced potential of contaminated tumor cells, thereby reinfusing only "pure" cells. The effect of "purging" in decreasing relapse after a transplant has not yet been proven.

Tumor Vaccine Therapies
Studies are being conducted to determine whether it is possible to immunize patients with proteins derived from their own breast cancer in a similar manner to vaccinating people with the influenza virus. The antibodies formed may help destroy or delay tumor recurrences. Tumor vaccines may help the body reject tumors. The goal is to prevent the cancer from returning.
Conclusion
You will be empowered in your breast cancer battle when you become knowledgeable, discerning, and involved in your treatment decisions. Your physician, health care team, family, and friends will form a strong circle of support. You are not alone.

Begin your journey with a better understanding of what to expect and how best to get through it. Use this booklet as a companion to guide you.

Back to Companion Guide Main page


Table of Contents


Acknowledgements

Introduction and Overview

Understanding the Procedure

Coping with Feelings

Considering Other Issues

Resource Listing and Glossary

Updates and New Developments

 

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