Living Donor Expenses

A common misconception is that all costs of living organ donation are borne by the transplant recipient and the recipient’s insurance. Yes, medical evaluation and surgical charges are fully covered, but the living donor will incur other expenses.

     A. Out of Pocket ExpensesThe transplant recipient’s insurance will not cover the cost of gas, possible airfare, food or lodging during evaluation, etc. 

– Estimates of out of pocket expenses associated with [living] donation range from $550 to $20 000 (35).

     B. Lost WagesNot all jobs provide paid vacation or sick leave, and there is the possibility of complications resulting in longer-than-expected convalescence. A Living Donor could be out of work for 2-12 weeks or more. Never mind major complications.

Donors rely on employer-provided vacation time and sick leave to recuperate, but the average donor required 12 days of unpaid leave before returning to work.(28)

     C. Follow-up CareThe transplant recipient’s insurance may have deadlines or maximum spending limits for the living donor’s post-surgery care, and some transplant centers determine their care of the living donor based on that insurance coverage. Not all living donors have insurance, and some insurance companies will refuse to pay for expenses relating to living donation, categorizing it as ‘elective’.

According to a review published in the July 2006 issue of Nephrology Dialysis Transplantation: (170)

– One US study reported that overall costs averaged $837 per donor, ranging from $0 to $28,906.

– Costs for travel and accommodation were experienced by 99% and 88% of donors, respectively, in 1 US study.

– Three studies (from Canada, the United States, and the United Kingdom) reported that 14% to 30% of donors lost income.

– One study from Germany and 1 from Australia found that 3% of donors resigned or were fired from their jobs as a result of physical limitations following surgery.

– A US study found that compared with non-donors, donors were 37% less likely to have long-term growth in household income.

– Caregiver costs were incurred by 9% to 44% of donors.

Financial Checklist*

1. Prepare for lost wages.

Not every living donor recovers sufficiently to be back at work after two weeks.

The Organ Donor Leave Act of 1999 authorizes 7-30 days of paid leave for federal employees who donate living donor organs. Check with your state and/or employer about their leave policy. 

2. Compile a budget sheet, complete with all revenue streams and expenses to know exactly how much income is necessary to keep the household afloat.

3. Ask the Transplant Coordinator about the LODN insurance plan.  

Living Organ Donor Network: Founded by an association of transplant-related organizations to produce a common database of information on living donors and track their quality of life post-transplant. They also offer life, disability and medical insurance for living donors as a safety net for complications which may arise from being a living donor.

Note: Analysis of the 2003 National Inpatient Sample, a nationally representative 20% sample of US hospital stays revealed that 16.9% of living organ donors were uninsured. (87). Another study by ASTS estimates up to 40% of living donors are uninsured. Unfortunately, some health insurance companies will refuse to pay for complications related to being a living donor as they deem the surgery to be ‘elective’ and/or a pre-existing condition.

4. Find out – in advance! – if you are entitled to disability (short or long) from your employer, the state, etc. if you suffer from an unforeseen complication as a result of the donation.

5. Explore the possibility of Supplemental Insurance. Find out how to get it and how much it will cost.

6. During your recovery, will your employer maintain your health insurance and if so, for how long? If you have to pay it back when you return to work what is the financial deficit to your normal budget?

7. Talk to the friends and family and make a plan, if possible, regarding any unforeseen circumstances. Accept any/all offers with a Please and Thank You.

8. Has anyone offered a fundraiser to offset your expenses? Say Yes. With a Please and Thank You.  [If the fundraiser far exceeds your needs, consider donating the extra funds to a worthy charity]

National Living Donor Assistance Center (NLDAC): Funded by an agency of U.S. Department Health and Human Services to reimburse living donors for out-of-pocket expenses related to living donation. A last resort when the living donor cannot be reimbursed by a State compensation program, insurance, Federal or State health benefits program, or the recipient. Recipient income limits apply.

9. Familiarize yourself available social services, including food stamps, heating assistance programs, etc.

10. Do not be afraid to have a conversation with the recipient regarding all financial obligations/ramifications. After all, they are receiving all the benefit of the living donor’s sacrifice.

11. Review your life insurance and adjust prior to the surgery.

Not only is this good preparation for the worst-case scenario, it’s also proactive. Some living donors have reported difficulty in procuring or increasing life insurance after donation.  

A 2005 survey of 10 major insurance companies found that liver donors would experience either higher premiums or an inability to find an underwriter.(69)

– NY Attorney General released the following statement allowing insurance companies to deny coverage to living donors in 2008.

– Of 167 living kidney donors from 1983-1995 at The Cleveland Clinic, as of 1997, 9% reported that being a kidney donor had a negative impact on the ability to obtain health, life or disability insurance.(4)

– NATCO’s statement on living donor insurability.

– A review of existing literature in 2007 revealed that 3-11% of living donors experienced problems with their insurance post-donation.(70)

(See Insurance page for on living donor health insurance related issues)

*Modified from a list created by Living Kidney Donor Celia, who suffered major financial difficulties after complications kept her out of work for an extended period of time.