Financial Costs

When the field of organ transplantation was just beginning in the United States in the 1950s, it seemed miraculous that a patient with failing kidneys (and, in later years, other failing organs) could be “cured” by receiving another person’s organ.  As this field quickly grew, the United States government realized that it needed to set rules for organ transplant centers to follow.

For example, these rules determined whether someone could sell their organ. Laws such as these have influenced the costs associated with living organ donation. Below, we describe the costs associated with living organ donation and how potential living donors can get help covering these costs.

Can you sell an organ in the United States?

What does the transplant center/recipient’s insurance cover?

What costs may not be covered?

Summary of covered and non-covered costs

How much do donors end up spending?

Who helps donors pay for these things?

 

Can you sell an organ in the United States?

The U.S. government wanted to give patients with organ failure equal access to transplants and prevent anyone from being exploited.  They passed the National Organ Transplant Act (NOTA) of 1984, which made it illegal “for any person to knowingly acquire, receive, or otherwise transfer any human organ for valuable consideration for use in human transplantation”1.  Essentially, NOTA was passed to make sure that people were not selling human organs in the United States.  Buying or selling an organ in the United States is still illegal today.

Costs Of Living Kidney Donation

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What does the transplant center/recipient’s insurance cover?

Costs that are directly related to the transplant evaluation are covered by the recipient’s insurance, including clinic visits with the transplant team and blood tests that they order. You should never have to pay for these services. If you get these tests done at an outside lab and they require up-front payment, the transplant center will pay you back.

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What costs may not be covered?

The recipient’s insurance does not usually cover costs related to travel to and from appointments, meals, parking, or a hotel.  Some insurance companies will pay for these, though, so it is always worth asking. Some donors may also have an abnormal result on a laboratory test during their evaluation process. Donors should follow up on any abnormal values, but the costs of any additional tests or clinic visits are not covered by the transplant center or the recipient’s insurance. Additionally, if you should already have received certain age-appropriate testing as a part of your routine health care, those kinds of tests are not covered by the recipient’s insurance. Some examples are:

  • A colonoscopy if you are over 50 years old
  • Diabetes screening if you have high blood pressure
  • For women: a mammogram if you are over 40 years old
For a full list of age-appropriate screenings recommended by the government, visit this site:
https://www.healthcare.gov/coverage/preventive-care-benefits/

Other costs to donors that have been reported include lost wages from missed work; childcare, pet care, or another caregiver; domestic help; and non-prescription or prescription medications.  Since most donors have a friend or family member accompany them to evaluation visits and/or their hospitalization, this companion may also have travel costs or have to miss work.  These costs are not covered by the transplant center or the recipient’s insurance.

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Summary of covered and non-covered costs:

Covered Costs
(Recipient’s insurance pays)
Non-Covered Costs*
(Donor pays)
Evaluation visits Lost wages
Diagnostic blood work Travel, food, accommodations, and parking
Diagnostic tests Work-up and treatment for unrelated conditions
Donation surgery Some follow-up expenses
Postsurgical care Routine health screenings such as a colonoscopy or mammogram

*These costs can sometimes be covered by the recipient’s insurance or by the transplant center. However, they are typically not covered. Be sure to ask your transplant center about their policies and whether they cover these types of costs.

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How much do donors end up spending?

If you are worried about the costs of being a living kidney donor, you should talk to the social worker at your transplant center for more information.

There are currently only a few studies published about donation-related costs for living kidney donors. These studies found that living kidney donors in the United States had a wide range of costs, with an average out-of-pocket cost of $8372. These costs can be broken down by when they occur in the donation process.

During the evaluation period3:

  • 96% of donors had some cost during the evaluation period, usually related to transportation, medical tests, or lodging.
  • 60% of donors had total costs <$500.
  • 33% of donors used paid vacation or sick leave to cover work missed for evaluation visits.
  • For companions who missed work, the average was 26 hours missed and $599 in wages lost.

During the hospitalization for donation surgery and the recovery period4:

  • 92% of donors had some cost.  86% had costs related to transportation, 41% had health care costs, 53% paid for meals, 36% paid for medications, and 23% paid for lodging.
  • Among those who missed work, the average amount of pay lost was $1,660.
  • 33% of donors reported a cost of over $2,500.

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Who helps donors pay for these things?

While it is illegal to pay someone for their kidney, it is legal to make the process “financially neutral”. This means that people can help you cover your costs, but you should not make money from being a living kidney donor. If your recipient, friends, or family members want to cover some of your costs, that is okay.  Some national organizations may provide funding, but you must apply early in the process.  They will not reimburse expenses that have already occurred.  These organizations include:

  • National Live Donor Assistance Center: Can help cover travel, hotel, and meal costs.  They give preference to donors who are below 300% of the federal poverty line. According to their website, 90% of applications are funded.  The National Live Donor Assistance Center has provided financial assistance to about 5% of all living donors since the fund was created4.
    https://www.livingdonorassistance.org/home/default.aspx
  • Health With Love Foundation: Can help cover lost wages (usually up to one week’s wages)
    www.healwithlovefoundation.org
  • American Transplant Foundation: Can help you pay specific bills while you are out of work
    www.americantransplantfoundation.org/programs/pap/

Other organizations can help you fundraise money to defray costs. These organizations provide tools to help you set up your campaign and spread your message. They will also hold and manage the money so that it doesn’t count against you in any income-based assessment of need. These organizations include:

In one of the studies mentioned above, donors received financial support from the transplant recipient (6%), from the recipient’s family (3%), from the National Live Donor Assistance Center (7%), from a nonprofit organization (3%), or from their transplant center (3%).

Anecdotal reports have shown that some donors have also used online campaigns such as on Kickstarter/GoFundMe. Please note that if you raise too much money for one of these campaigns, you might be seen as having financial gain from your donation, and you might not be allowed to donate.

If you are worried about the costs of being a living kidney donor, you should talk to the social worker at your transplant center for more information.

Costs Of Living Kidney Donation

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For more information, please visit the Living Kidney Donor Financial Toolkit:
https://www.myast.org/patient-information/live-donor-toolkit
   
This toolkit contains important resources, including:   
A cost estimation worksheet
How to apply for reimbursement through the National Lie Donor Assistance Center
Special information for members of the U.S. military

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1.National Organ Transplantation Act of 1984, Pub L. 98-507, 98 Stat. 2339-2348 (Oct. 19, 1984).

2.Clarke KS, Klarenbach S, Vlaicu S, Yang RC, Garg AX, Network ftDNOR. The direct and indirect economic costs incurred by living kidney donors—a systematic review. Nephrology Dialysis Transplantation 2006;21(7):1952-1960.

3.Rodrigue JR, Schold JD, Morrissey P, Whiting J, Vella J, Kayler LK et al. Predonation Direct and Indirect Costs Incurred by Adults Who Donated a Kidney: Findings From the KDOC Study. American Journal of Transplantation 2015;15(9):2387-2393.

4.Rodrigue JR, Schold JD, Morrissey P, Whiting J, Vella J, Kayler LK et al. Direct and Indirect Costs Following Living Kidney Donation: Findings From the KDOC Study. American Journal of Transplantation 2016;16(3):869-876.