New Transplant Patient Financial Guide

Every week case managers in the Office of Patient Advocacy (OPA) at the National Marrow Donor Program® (NMDP) answer questions from patients and their family members about managing the costs of a blood stem cell transplant.

Common concerns include:

• Finding and paying for housing when the transplant takes place far from home
• Working with health plans to cover treatment received under a clinical trial
• Covering the costs of searching for an unrelated marrow or blood stem cell donor or cord blood unit
• Raising money for costs not covered by insurance

As they talk with patients and families who are already dealing with the strain of an illness, OPA case managers hear how stressful managing the costs of a transplant can be. For many patients, managing the costs of a transplant can feel like being lost in a maze of questions and concerns.

Mapping the Maze

The NMDP has a new tool to help transplant patients with financial questions. Mapping the Maze: A Personal Financial Guide to Blood Stem Cell Transplant is a free 60-page guide. The guide helps patients understand their insurance coverage and sort through their financial questions. Step by step, the guide helps patients make a plan to handle the costs of their transplant.

"We wanted to offer patients a good resource to help them think ahead," said Heather Sikora, an NMDP financial assistance specialist who helped create the guide. "They can sit down with this guide and a pencil and figure out where they stand with their finances."

Planning Worksheets Especially useful are the many checklists and worksheets, such as:

• Questions to ask your health plan representative
• Costs assessment forms to estimate direct and indirect costs of transplant
• Monthly income and monthly expenses worksheets

These checklists prompt patients with questions that they might not think to ask on their own. They also help patients plan for costs they may not know about. For example, a checklist reminds patients who will have an unrelated donor transplant to ask their health plan how it covers donor search. This is important because health plans that pay for a transplant may not cover the search for an unrelated donor. The checklists also remind patients to plan for the common indirect costs of a transplant. These costs can include travel to and parking at a transplant center, special house cleaning or extra childcare costs. Knowing what to expect helps patients plan ahead. Early on, they can plan a course of action, such as submitting an appeal or applying for a grant.

Fund-raising Tips and Resources

Each chapter of Mapping the Maze guides patients through one step of creating a financial plan-from sorting records to getting help with expenses. For example, for patients who decide to raise money to help cover transplant costs, one chapter gives advice on fund raising.

Fund raising tips include:

• Don't try to do it all yourself. It's OK to ask for help from family, friends, coworkers or charitable organizations.
• Before you begin, make sure fund raising won't cause you to lose benefits from other programs such as Medicaid.
• Keep good records of money raised. Keep the money in a separate account from your other funds.
• Find out the tax laws for donated funds.

Following tax laws can be tricky. Mapping the Maze explains that if you want donations to be tax deductible for donors, you need to work with a tax-exempt organization. A fund-raising organization can help you follow tax laws. It can also help in other ways. Mapping the Maze provides a list of questions to ask when choosing a fund-raising organization.

Get Your Copy

To get a free copy of Mapping the Maze from the NMDP:

• Order a copy online from the NMDP's Patient Materials Web page: Click here.
• Read and print the guide online from the NMDP Web site at http://www.marrow.org/PATIENT/maze_financial_guide.html
• Call the Office of Patient Advocacy at (888) 999-6743

Mapping the Maze: A Personal Financial Guide to Blood Stem Cell Transplant was published through a collaboration of the National Endowment for Financial Education®, the National Marrow Donor Program® and The Marrow Foundation®.

NMDP's Office of Patient Advocacy

The NMDP's Office of Patient Advocacy (OPA) is a valuable resource for patients and families who want information about the unrelated donor stem cell transplant process. OPA staff receive more than 400 calls a month in which they provide information on a wide range of topics and available resources; connect patients to NMDP transplant centers; and provide patient support and advocacy services.

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