Giving money to living donors?

[Sunny]

How do you feel about the issue of giving money to living donors?
I was devastated today when my sister told me she wanted money to pay her lost wages plus a full time nurse for two weeks to live at her house while she recovered, plus whatever other expenses she might run across regarding health insurance premium increases. Who knows what else she'll come up with. What should I pay? What can be covered by my insurance? What is usually done?
I need help on this dilemma. I was blindsighted by the request.

[okarol]

Our insurance did not cover any of the living donor expenses so we agreed to pay for the donor and her husbands travel (airfare to CA from OH twice - testing and surgery) lodging for both trips and rental cars. Patrice used her own sick time and vacation time to cover her lost wages. Some donors qualify for short term disability through their employer. Some States have established tax deductions and donor leave laws: http://www.transplantliving.org/livingdonation/financialaspects/statetax.aspx

I feel strongly that the donor is going through the inconvenience of testing, the risk of surgery and the pain of recovery and they should not be financially impacted by the donation. Jenna's donor did not want anything but we insisted that she allow us to reimburse her. You may recall that she donated our check to another family struggling to meet their medical expenses. Most donors cannot afford to do that.

Many patients do fund raising to cover the costs associated with a kidney transplant. One hospital actually included the info in with their overview of what the entire transplant surgery entails, so that patients will be prepared and could organise a budget and raise funds through their community.

1984 - Congress passed the National Organ Transplant Act (PL 98-507) which prohibits the sale of organs and tissues or any exchange for valuable consideration.

Regarding Prohibition of Organ Purchases, Section 301(c)(2) states:

The term "valuable consideration" does not include the reasonable payments associated with the removal, transportation, implantation, processing, preservation, quality control, and storage of a human organ or the expenses of travel, housing, and lost wages incurred by the donor of a human organ in connection with the donation of the organ.

[Sunny]

       *I should point out my sister has been collecting unemployment for almost a year after being laid off last Spring plus she gets Cobra.
She does not have any employer disability leave available. Can she collect disability insurance from the State or from Social Security while recuperating after donating a kidney to me? Plus her nurse coordinator says she will have a 6 - 8 week recovery period and the first two weeks after surgery she will need round the clock assistance. Is this standard?
      * My sister lives alone and refuses to allow any of our nine siblings to stay with her in her home and refuses to move into my other sister's house or my mother's house so they can take care of her. She wants me and my husband to pay for a round-the-clock nurse for two weeks, along with 2 months lost earnings (she will be claiming her salary from her previous job and not the unemployment rate as she says she plans on going back to work). Not only that, when Cobra runs out, she insinuates my husband and I should pay for her health insurance.
      *I'm so disappointed about all this. I feel my husband is being blackmailed because she knows my husband will do anything to help me, including selling stock, or withdrawing money from our retirement accounts so he can pay her. To her it seems to have become a business transaction. I spent 6 years dreading the day I had to ask this sister for a kidney because 6 years ago after being tested she already knew I was her only viable option (I have PRAs of 96  and type 0 blood statistically leaving me with a .01% chance of finding a cadaver match).

[okarol]

Sunny,
Has your sister been approved by the transplant team? I ask because I am surprised that these issues would not have been agreed upon and plans made with help from the coordinator and the social worker. It is really unwise for the recipient to be negotiating the financial situation without guidance. You want to get a kidney but preserve the relationship with the family member.
Since your sister is on unemployment she might qualify for other help. There is a US government-funded program, the National Living Donor Assistance Center, that will cover nonmedical expenses related to donation for eligible donors. A transplant social worker, or appropriate transplant center representative, based on a complete recipient evaluation, can provide an official statement, notwithstanding the recipient’s income level, that the recipient of the organ would face significant financial hardship if required to pay for the qualifying living organ donor expenses.  A recipient’s financial hardship is defined as circumstances in which the recipient’s income exceeds 300 percent of the HHS Poverty Guidelines in effect at the time of the eligibility determination, but the individual will have difficulty paying the donor’s expenses due to other significant expenses.  Whether or not hardship exists in a particular case requires a fact-specific analysis; examples of significant expenses include circumstances such as paying for medical expenses not covered by insurance or providing significant financial support for a family member not living in the household (e.g., elderly parent).  So they look at the donor and recipient and determine if they qualify for financial assistance. More info here: http://www.livingdonorassistance.org
I don't know if you saw this thread I posted about fundraising, but it's something you should consider discussing with your coordinator. A third party, such as a sibling or a neighbor could head up the drive to help raise the necessary funds. http://ihatedialysis.com/forum/index.php?topic=18193.0
Your sister should definitely do more research about recovery and care after the surgery. Has she joined Living Donors Online? She would get good support and advice. www.livingdonorsonline.org. The insurance afterward is certainly a concern, and without coverage most transplant centers would not even approve her as a donor. What does your coordinator say about this?
I know this must be so hard for you because you are counting on your sister to come through. Is it possible she is having second thoughts and is creating demands hoping that they will be an obstacle to going through with the surgery?
I hope things work out. Sending you lots of hugs 

[Sunny]

Okarol,
I have read all of you links and thank you for them.
Yes, I think she must be having 2nd thoughts because all of these issues are surmountable.
After looking through your links and doing more research regarding State Disability, I called my transplant Social Worker. She says my sister would qualify for State Disability while she is recovering. Stanford also has a financial asistance Donor Network. plus my insurance company would pay for a 24 hour nurse for two weeks if Stanford deemed it medically necessary. It's just that my sister has never called Stanford and gotten in touch with her Social Worker to ask any questions.She has only spoken with her nurse coordinator and seems to selectively filter worse case scenerio information. She has been approved for further physical testing. They called to ask her to come and talk with them and meet "her" people: she has a separate doctor, nurse coordinator, social worker, assistant. Stanford does everything within their abilities to NOT create any conflicts of interests between donors and recipients. Yet she won't even call them. She just worries.
I'm beginning to think my sister liked the idea of telling people she was going to be my donor. It made her look good.In other peoples eyes a living donor is like an angel, and she liked that feeling. Right now I'm wishing I still had that feeling.

[monrein]

Sunny, I have nothing to offer in the way of concrete suggestions, although I think that what Karol has posted is an excellent place to begin.
I do think however that you may be correct about your sister having some second thoughts as the realities and practical details of donation set in.  Her reluctance to meet with the various members of her team would seem to point in that direction and all of these concerns ought to be between your sister and the professionals, definitely NOT between her and you and/or your husband. 
Sadly, all of this is both stressful and disappointing and I hope that your sister will find the resolve to get her questions answered and make a decision one way or another, for everyone's sake.  My thoughts are with you Sunny.   

[Sunny]

Okarol really knows her stuff.
Thanks for the helpful words. I'm going to take a break from thinking about all this till after Easter.

[okarol]

 

[Rerun]

If she tells "her people" about her demands I'm thinking they will find a way to disqualify her. 

I'm all for selling kidneys at a fixed price.  Then everyone is happy.  But, it is not legal....yet.

[Sunny]

Yep, I'm all for paying for a kidney. I have no problem with that.It would be easier to make a payment to a stranger or far flung relative, though.
It's kind of weird having a sister ask for it. Someone I have spent my whole life meeting for coffee,lunch, and going to the movies with.

[okarol]

I was thinking the same thing Sunny. Strangers are easier because they don't have an emotional component to the donation process. I have always thought it's hard for family donations for a number of reasons. If a brother doesn't offer to help his sister, the parents will be disappointed. If a cousin does not offer to get tested as a donor, what will the rest of the family think? If a patient loses a kidney given by a family member, what is the impact on the relationship? It can be very complicated and, although it seems to work out most of the time, sometimes it changes relationships for the worse.
I think what monrein says makes sense. These issues need to be addressed and discussed by your sister (or ANY donor) directly with the transplant team. Just as it would be unfair of you to pressure or coerce a family member to donate, so too is it unfair for a donor to make demands they know cannot be met.
Does your sister have a living donor advocate to help through each step of the process? The living donor advocate will promote her best interests regarding the transplant and is not involved with the potential recipient evaluation, remaining independent of the decision to transplant. Their role should be to help address her financial, emotional and logistical issues so misunderstandings don't happen.

[Sunny]

Stanford provides a living donor advocate for her.
She has many good resources available to her at Stanford, if she would call.
I called my transplant Social Worker to ask why my sister didn't have all this information about financial assistance for donors. It's because my sister hasn't bothered to call them back. She doesn't want to think about all this right now. Instead, she'd rather needlessly neurotically worry.
I'm putting up my steel deflector Superwoman shield. The one I put on to innure myself to ESRD and it's problems. I'm going to need it to get through this issue with my sister. I'm figuring with this kind of attitude, the odds of her being approved for donating diminishes. Thank you so much for your adivse.

[kellyt]

Why does she feel she would need a full time nurse for two weeks while she is recovering?  My donor needed no assistance with anything.  She was a little sore, but that was it.  Good Luck.

[monrein]

My donor was in a restaurant having dinner on the fourth evening post surgery.  She opted not to have laproscopic surgery, but still would not have needed a nurse.

[Sunny]

Yes, quick recovery of donors is what I have read about too when I investigate on various message boards or medical transplant information sights.
When she talked to her transplant nurse over the phone the only thing she took away from the whole conversation was that she needs two weeks of nursing 24 hours a day since she lives alone and 2 month to recuperate. I should point out my sister is at the top of her game health-wise. She does Yoga and belly dancing as favorite past times. Her abs are rock solid. She's 5'10" and 135 pounds so she's tall ,slender and in very good shape.A year and a half ago she had a face lift and made it through that major surgery well. I think she will get through this surgery and recovery with no complications. If I thought the surgery would be a health problem for her, I would NEVER ask. Of course, the hospital would never let her.