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Removing barriers to transplant Caden (left), transplant recipient, with his father, Josh


Half is not enough. Every Patient Counts!

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3 barriers stand in patients’ way • Affording a transplant – even with health insurance

• Finding a matching donor for transplant • Developing complications that can keep a transplant out of reach

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Barrier: Affording a transplant • Some insurance policies do not cover the cost to search for a donor • Depending who is sick and who needs to act as caregiver – at least one, sometimes two incomes may be lost • With only 130 U.S. transplant hospitals, many families must live away from home for months and pay $1,000s in travel and housing costs 4


Making ends meet Today, Connor is a happy, healthy 5-year-old ready to start kindergarten. But to get here, he had two marrow transplants. Both times his mother took unpaid leave from her job to be Connor’s full-time caregiver, while his dad worked to keep the family financially afloat. Their income was cut in half just as their uninsured expenses rose significantly.

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Recovery adds up Recovery can take 3 to 6 months • Patients may take 20+ medications a day, with co-pays at $500 a month or more

• Co-pays for clinic visits can add up to $300 a month • Many families spend $800 to $1,500 a month on temporary housing, while also covering a mortgage back home

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Even if you plan ―My husband and I, we had a plan, or so we thought. The boys had insurance, and we saved up money for more than a year knowing the strain it would put on our family with me not working. But we had no idea it would go on for so long, or that we’d run out of resources.‖

– Dawn, mother to Zach and Jaxsen, who received transplants at the same time in 2007

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Solution: Financial grants In 2010, our patient assistance fund provided: • 717 families with grants to cover the cost to search for a donor - when their insurance policy would not • 1,288 families with recovery grants to help with uninsured post-transplant expenses In all, we’ve provided more than 8,150 families with grants since 2004

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The gift of less worry ―The burden of being that sick is awful. You

can’t work. You can’t get your own groceries. You can’t even empty your own trash. On top of that, as a single parent, I was very aware that I wasn’t meeting my responsibilities to provide for my daughter— I can’t tell you how that feels. ―The grants helped me buy groceries and pay prescription co-pays. They gave me less to worry about.‖ – Anna, transplant 2007

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But we must do more • During transplant and recovery, a family’s expenses can exceed their income by $10,000. • Our average total recovery grant per family only helps with about 10% of that. We simply are not keeping pace with the need.

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That’s where you come in Your contribution delivers tangible relief to patient families struggling with $1,000s in uninsured costs. ―Be The Match Foundation patient assistance grants helped with the bills and helped with my spirits. Just knowing that there are people out there who understand and want to help — well, that means a lot.‖ – Victoria, transplant 2009

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Barrier: Finding a match • 70% of patients have no suitable marrow donor in their family • Some quickly find a matching donor on the Be The Match Registry • Others do not find a match • For some patients, the chances of finding a matched, available donor are as low as 66%

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No donor, no transplant

It took Lynne’s doctors months to find her a matching marrow donor. Six days before her scheduled transplant she passed away. ―My mother’s eyes would just glow when she talked about her upcoming marrow transplant. Our hope did not cease with her death. We are committed to making sure everyone who needs a marrow transplant finds a donor in time and receives this life-saving gift.‖ – Traci, Lynne’s daughter

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Solution: Add donors to the registry We’re adding nearly 723,000 potential donors a year, increasing patients’ likelihood of finding a match. But we need to do more. • Your gift ignites hope for searching patients • Every $100 contributed adds a new donor by: – Educating and tissue typing potential donors – Adding their info to our national database – Storing their tissue samples in our repository

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All it takes is one Nancy was running out of time. Her leukemia was advancing and none of her five siblings was a marrow match. In 2002, her doctors began searching Be The Match Registry for an unrelated donor. They found one, only one: Chris Today, thanks to Chris, Nancy is cancer-free and spending lots of time with her grandchildren.

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Barrier: Complications A decade ago:

• Few patients over age 50 were eligible for transplant • Patients who couldn’t find a matched adult donor had few options • Post-transplant complications could be life-threatening for many patients Today, research has advanced the science of transplant and is saving lives.

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Offering treatment to more patients NMDP Transplants by Recipient Age

Research-driven treatment advances have made transplant an option for older patients.

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Medical research is breaking down barriers • Research discovered umbilical cord blood is a rich source of cells for transplant and provides an option for hard-to-match patients • In 2010, 42% of minority patients who received a transplant used cord blood • Research-driven advances in clinical care and use of better matched donors have increased survival, lessened post-transplant complications and improved patients’ quality of life

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Solution: Invest in research Your contributions will turn the impossible into the achievable by investing in new research discoveries. ―The message I tell people is don’t give up hope. The science is always improving. What is considered impossible today will be standard procedure tomorrow. That’s why it is critical to fund more research.‖ – Mike received a transplant at age 62, even though he was initially told he was too old for transplant

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Every Patient Counts! We know marrow transplants. We know the barriers to transplant. And we know our patients can’t overcome them without you! Half is not enough. Please give generously > Mike, transplant recipient, with his donor, Jennifer 20


Every Patient Counts! Removing the Barriers