On the line: Up Front Costs

Photo: “House” by Tax Credits

Katie has significant expenses, as she will need to re-locate near the transplant center for 3 months. Her rent at home is $800/month. Though she can be reimbursed $1,500/month for lodging at the transplant center from insurance, she needs to come up with the money up front and does not have it….The patient is in desperate need of funding to help pay for her portion of lodging ($1,500 for 3 months = $4,500)

Katie’s doctors decided that an allogeneic transplant was the best course of treatment for her aplastic anemia. In addition to housing, she also listed transportation and co-pays/insurance premiums as her areas of greatest need.

In order to give a more clear idea of the depth of need faced by bone marrow, stem cell, and cord blood transplant patients and their families, we are sharing excerpts from actual applications to The Bone Marrow Foundation’s Patient Aid Program. The names have been changed to maintain confidentially, but the stories are straight from the applications.

To learn how you can make a gift to support the Foundation’s efforts to help transplant patients and their families, click here.

On the line: Cannot work

Photo: “Limo arrives!” by fotobydave

Richard is a 49 year old male with myelofibrosis who underwent an allogeneic stem cell transplant in July 2012. He used to work as a limousine driver but cannot work any longer and he cannot afford his rent/utilities. Richard does not qualify for SSI/SSD because he is a resident, but not a naturalized citizen. He has three children and a wife, and the family is struggling significantly financially.

Richard’s wife and eldest son work low wage jobs, but without his income, they are unable to meet the family’s basic needs. They’ve requested assistance paying for housing, utilities, and living expenses.

In order to give a more clear idea of the depth of need faced by bone marrow, stem cell, and cord blood transplant patients and their families face, we are sharing excerpts from actual applications to The Bone Marrow Foundation’s Patient Aid Program. The names have been changed to maintain confidentially, but the stories are straight from the applications. To learn how you can make a gift to support the Foundation’s efforts to help transplant patients and their families, click here.

Research Survey for Adult Stem Cell Transplant Patients and their Caregivers

We recently received an email requesting our help in spreading the following about a research survey being conducted by the University of North Carolina:

Are you an adult who has had an allogeneic transplant, or are you the caregiver of someone who has undergone this treatment?

Researchers at the University of North Carolina at Chapel Hill are preparing to develop resources to help adult allogeneic stem cell transplant recipients and their caregivers. Their goal is to make post-transplant recovery easier and less stressful, and to help people get back to normal after transplant. They have developed a brief survey that asks transplant recipients and caregivers to provide feedback on the biggest challenges to having a healthy recovery after hospital discharge. They also want to know what kinds of resources would make recovery easier and less stressful. Your feedback on these issues would help them create those resources.

The survey asks about:

• The medications and self-care that were most important to you but that you found most difficult to follow after hospital discharge,
• How well you think you were able to follow recommendations for medications and self-care,
• Help and information you got, or that you would have liked to get, to help you follow those recommendations, and
• Other kinds of resources that would have made recovery easier and less stressful.

If you would be willing to provide feedback on these issues, please click on the link below. It will take you to the survey, which will take 10-15 minutes to complete. Your responses will be completely anonymous. If you have any questions, please contact Christine Rini at 919-843-6580 or christine.rini@unc.edu.

Your Anonymous Survey Link: https://unc.qualtrics.com/SE/?SID=SV_bkJOZXVoBx1pVIh