Should We Pay Organ Donor Heroes? - Arthur L. Caplan, PhD

[Clark]

http://www.medscape.com/viewarticle/884101

Should We Pay Organ Donor Heroes?
Arthur L. Caplan, PhD

Hi. I'm Art Caplan. I'm at the Division of Medical Ethics at the NYU School of Medicine. I have a good friend, Paul Baskin. He's a health reporter, but he is also someone who received a kidney. He received that kidney from a woman, Britney Burton, who was an altruistic donor—not a family member, but a stranger. Britney Burton found out about Paul's need for a kidney and she decided to fly halfway across the country to become his donor, and indeed she was his donor. He's doing fine and she appears to be doing fine.
If a patient asks about donating a kidney, a piece of a liver, or something else to a stranger, there are a couple of things that need to be considered. First, sometimes people do this because they feel guilt or because they're trying to make up for having done something bad in their life. It's not necessarily a reason not to let them, but it is something to talk about ("Is that the best way to make yourself whole, if that's what's really bothering you in terms of really wanting to be a donor?"). Other times, people are just altruistic. They're competent, they understand the risks, and they just want to help. I think they can be told, "You just have to have an informed consent, but if you're going in eyes-open and you don't have any health issues that would disqualify you, it's a really noble, altruistic, and ethical thing to do."
But there's another set of facts that altruistic donors need to hear. There are costs that accrue to them, even though they're trying to be heroes. These costs include travel, time lost from work, staying at a hotel, and eating out when going to the place where the recipient is waiting. Are you going to be able to get health insurance if you donate a kidney? What about life insurance or disability insurance down the road? Is your boss going to fire you because you ran into some complication and missed work for a few weeks? We are not doing right by our heroes. We're asking them to cover costs that they shouldn't have to cover.

Look, I'm well known as a critic of organ markets. I don't think selling kidneys is the way to get at the shortage of kidneys. It will lead to all kinds of trouble. But that's very different from saying that if you want to altruistically help someone else, then you have to incur costs and you're going to be financially worse off after this noble act than you were before. That's crazy. We need to change our public policy to permit legitimate expenses, legitimate insurance, and legitimate travel to be covered.
Altruistic donors need to hear that they might become worse off. The people in Washington and our state capitols need to hear that this shouldn't be the case.
I'm Art Caplan from the Division of Medical Ethics at NYU. Thank you very much for watching.
Talking Points: Should We Pay Organ Donor Heroes?
Issues to consider:
   •   Giving an organ costs $5000 on average and can reach $20,000. In 2013, 20% of American households had no discretionary funds at all, and only 8% could afford to donate an organ at a cost of more than $5000 without dipping into savings or going into debt.[1]
   •   Some healthcare professionals worry that significant out-of-pocket costs, which burden donor candidates, may be an obstacle to donation.
   •   Others contend that if payment or reward for living donors can be made legitimate and ethically consistent with other accepted medical practices, exploitation can be prevented and both donors and recipients can be treated fairly.
   •   In an American multicenter study, transportation and accommodation costs were incurred by 99% and 88% of donors, respectively.[2]
   •   There is only one US grant (from the National Living Donor Assistance Center—NLDAC) to cover live donor travel costs. Although there may be center-specific variability in grant utilization, prospective donors—and their intended recipients—must also meet eligibility criteria.[3]
   •   The NLDAC grant is used by less than 10% of US live donors annually.[3]
   •   In a study of 154 consecutive kidney donor clinic evaluations conducted from November 2014 through August 30, 2015, 41% of donors were local, had travel benefits, or declined. Of the remaining 91 prospective donors who might have benefited from grant support, only 29 (32%) obtained the grant.[3]
   •   The other 62 (68%) did not meet eligibility screening, mainly because the recipient's household income was outside the required means test (ie, greater than 300% of the federal poverty level). The remaining exclusions included being a nondirected donor (people who decide to make a difference in the life of a stranger by donating a kidney but do not have an existing recipient for the donation), not meeting residency requirements, and "other."[3]
   •   According to the study,[3] expanding NLDAC eligibility criteria—by broadening the requirement for recipient means testing or by taking steps to eliminate it from the NLDAC charter—would reduce financial burdens associated with live donation.
   •   In a study in which researchers collected cost data in the 12 months following donation from 182 living kidney donors (LKD) participating in the multicenter prospective Kidney Donor Outcomes Cohort (KDOC) Study, most LKDs (n = 167, 92%) had one direct cost or more following donation, including ground transportation (86%), healthcare (41%), meals (53%), medications (36%), lodging (23%), and air transportation (12%).[4]
   •   In addition, the study found that LKDs missed 33, 072 total work hours, 40% of which were unpaid and led to $302,175 in lost wages (mean, $1660). Caregivers lost $68,655 in wages (mean, $377).[4]
   •   Although some donors received financial assistance, 89% had a net financial loss in the 12-month period, with 33% reporting a loss exceeding $2500. Financial burden was higher for those with greater travel distance to the transplant center and lower household income.[4]