Living Donors Online Message Board
Living Donation Discussion and News => Living Donation Forum => Topic started by: Spirited64 on June 26, 2016, 11:18:20 PM
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I have been accepted as a donor (nondirected) and the transplant team is hoping to have a chain of 3-6. I will be going to another state for the procedure (used to live there) and best friends still live there. They will be helping me post op, etc. I will also have a local friend come with me as well. This will involve airflights, etc. Lodging will probably be at friends but may not be enough space for everyone. I already traveled once there for several days of testing (and it was out of my own pocket). Altho I can pay for the needed expenses, it will not be as easy as initially thought since I have been "hit" with several unexpected, major expenses and there are many smaller expenses incurred with donation that add up.
OK, here is the "rant" part. I called the National Living Donor Assistance Center and was asked who the recipient was. I said I did not know and would not know b/c of being a nondirected donor. I was told that financial assistance is based on the recipients income, not mine. This makes no sense to me at all. I was told that the program would apply on my behalf, once the direct recipient is known to them. I was informed that if the recipients income is above a certain amount, then it is expected that the recipient could afford to help defray some of my expenses. This is ludicrous. I don't know this person and v.v. and if this person (or "household") had an income that disqualified me from getting some help, how realistic is it that somehow I am going to ask this recipient for financial help?? I don't know who this person is and am not allowed to know until "later" (some time post surgery). And if there was some way to "ask", how uncomfortable a situation is that? I feel it would be like a subtle form of "financial aid extortion". Even if the transplant program staff act as the liason, the same discomforts and concerns apply.
I am angry at this policy, even if I did not need it at all. I actually would fall under the guidelines for assistance if it were based on my income. It just does not make sense and it seems that the particular circumstances and ramifications of the nondirected donor have not really been carefully considered. There is such a need for more nondirected donors, but additional roadblocks for getting some financial help to offset the higher than expected costs of the entire donation process, does no favors to facilitating more nondirected donors.
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Try calling Corporate Angels Network. Here is the website. http://www.corpangelnetwork.org/
they are a company that connects corporate jet flights with patients and or donors who need help traveling (very similar to connecting donors with recipients!). I work as a stem cell transplant nurse coordinator and just found this resource for one of my patients whose father will be coming for testing to see if he would be an appropriate stem cell match. Good luck!
Sherri
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That is the rule for National Living Donor Assistance Center, but the transplant hospital would be applying on behalf of the recipient, which would help cover your costs. The recipient's hospital would submit info from both of you, even if you don't know the recipient. Have you asked the transplant coordinator to help facilitate this?
Here is more info about financial assistance. I hope it helps.
- National Living Donor Assistance Center https://www.livingdonorassistance.org/potentialdonors/applicationprocess.aspx "To file an application for donor travel expense to the transplant center, the recipient and the donor must complete NLDAC Application Worksheets and give to your transplant center professional who will file an application on behalf of the donor. Eligibility is based on yearly household incomes."
- American Living Organ Donor Fund http://www.helplivingdonorssavelives.org/ "The need to support living organ donors is as great as the organ shortage itself."
- American Transplant Foundation http://www.americantransplantfoundation.org/programs/pap/ "Our goal is to provide support so they won’t be in a financial trouble after giving the Gift of Life."
- Some states also offer tax deductions or credits for travel expenses and time away from work: http://www.transplantliving.org/living-donation/financing-living-donation/legislation/
- These organizations may provide financial assistance to transplant candidates or recipients and their families, and some to donors. This is a sample listing and should not be interpreted as a comprehensive list or an endorsement. Ask your transplant financial team for the latest information or help. http://www.transplantliving.org/before-the-transplant/financing-a-transplant/directory/
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Here are two other sources that might be able to help financially:
--- "Transplant Recipients International Organization" ("TRIO") mostly works to help recipients, but also has some limited funds and access to some free air tickets to help living donors with travel expenses. www.trioweb.org
--- www.healwithlovefoundation.org tries to raise funds to reimburse living donors for lost wages during recovery.
best wishes.
Fr. Pat
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Thanks for the suggestions and will check into them. I still think it shouldn't be so hard. Resources are too scattered, uncertain, variable, and may not even be available. Something is wrong with that picture. I am donating my kidney. I just don't want to be donating a chunk of my not too fat wallet.
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Thanks for the suggestions and will check into them. I still think it shouldn't be so hard. Resources are too scattered, uncertain, variable, and may not even be available. Something is wrong with that picture. I am donating my kidney. I just don't want to be donating a chunk of my not too fat wallet.
You're right! It should not be this hard. One insurance company is now covering donor's travel expenses, but that's it.
I also wanted to mention that often a recipient will start fundraising to cover the donor's costs, sometimes it's a community spaghetti dinner, or a yard sale or bingo night. Some use gofundme or other online sites. Since you don't know your recipient, this might be something a friend or relative of yours will do to support you.
There's also help for living donors, as of 2015, with the National Foundation for Transplants http://www.transplants.org/living-donor-fundraising.