Disincentives or Barriers to Becoming a Living Donor

1. Money/Expenses. (also see Financial Hardship on Risks page)

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

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.

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

Exact quantification of the number of potential donors ultimately dissuaded from proceeding by financial concerns is not available, although a recent survey indicates it may be as high as 40% (36).
 

     A. Out of Pocket Expenses: While the recipient's insurance will pay for all treatment-related expenses, they do not cover the cost of gas, possible airfare, food or lodging during evaluation, etc. 

     B. Lost Wages: Not all jobs provide paid vacation or sick leave, and there is the possibility of complications resulting in longer-than-expected convalescence.

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 Care: The recipient's insurance will only cover the donor for one year post-surgery. Yet UNOS/Medicare(CMS) requires all transplant centers to report living donors' data for two years. Not all living donors have insurance, and some insurance companies will refuse to pay for expenses relating to living donation, categorizing it as 'elective'.

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.

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.

The ‘Organ Donor Leave Act’ of 1999 authorizes 7–30 days of paid leave for federal employees who donate organs. Check with your state or employer about their leave policy.

[See Questions to Ask for more on how a prospective living donor can prepare themselves for any financial difficulties related to living donation]

2. Health and Life Insurance.

It is suggested that prospective living donors increase their life insurance pre-donation, because some have been unable to do so post-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)

More importantly, some living donors have been unable to procure Health Insurance coverage post-transplant. Transplant centers will admit there is difficulty changing carriers post-donation, or obtaining an increase in life insurance. They do not, however, stipulate which carriers this affects, and it varies by state.

There is no law in the U.S. preventing insurance companies from denying coverage based on living donation.** They consider the procedure 'elective' and the lack of a kidney a 'pre-existing condition'.

- 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)

*http://www.kwch.com/Global/story.asp?S=9365060

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