If you’re an American, when you donate your kidney — either to a loved one, as most donors do, or to a stranger, as I did — you pay nothing for the medical side of things. In the United States, Medicare has, since the Nixon administration, guaranteed coverage of dialysis (where you have a machine replace the normal functions of your kidneys) and transplantation for people with severe kidney disease. And because transplantation saves money relative to dialysis, Medicare is more than happy to pay both the donor’s and the recipient’s medical bills.
But those aren’t the only costs that donors have to pay. When I donated my kidney, my girlfriend and my father took time off work, traveled to be with me, and paid for a hotel to stay in while I was in the hospital.
And while Vox Media was very generous in granting me paid medical leave, not all employers are so generous. The Family and Medical Leave Act of 1993 entitles covered employees to unpaid leave of up to 12 weeks after donating (a fact which, under pressure from Republican Rep. Jaime Herrera Beutler (WA), the Department of Labor only clarified this year). But using that to take two or three weeks off after a kidney donation leaves you short two to three weeks of wages. That can be a major burden, especially for low-income donors. So too can the cost of child care for parents who donate.
Luckily, there’s a group that helps people with the travel costs associated with donating. It’s called the National Living Donor Assistance Center (NLDAC), and it’s funded by the federal Department of Health and Human Services (HHS), which administers Medicare. But the group helps a relatively small number of donors. In 2016, the year I donated, less than 9 percent of living donors got support from NLDAC (I was among those not getting any).
The problem is not a lack of funding; NLDAC actually has more funding appropriated to it than it can spend. There are a few reasons for that. One is that only donors in cases where both the donor and recipient earn less than three times the poverty line can receive help. That was why I didn’t get any money. The income cap would be a reasonable limitation if NLDAC were budget constrained, but at the moment, it’s not. I’m lucky that I didn’t need the help, but given that NLDAC has some money to spend, increasing the cap would be a good idea.
Perhaps worse, NLDAC can pay for “travel, lodging, meals, and incidental expenses,” but barring regulation from the HHS, it can’t reimburse lost wages or pay for child care for donors. The group is currently running a randomized controlled trial, funded by the Laura and John Arnold Foundation, in a handful of transplant centers where it does reimburse for lost wages to see if offering that increases living donations.
But NLDAC could adopt that policy nationally, right now, with a simple regulatory change. No action from Congress would be required, according to NLDAC’s own analysis. The HHS can, on its own, issue a rule permitting NLDAC to reimburse lost wages and child care expenses. And randomized trial aside, we already have strong reason to think that reimbursing lost wages would significantly increase donations. When Israel started reimbursing lost wages for living organ donors, donations increased by 64 percent.
Josh Morrison, an altruistic kidney donor who runs the kidney donor advocacy group Waitlist Zero, estimates that if NLDAC started reimbursing lost wages, living kidney donations could increase by about 25 percent. In 2018 to date, there have been 5,864 living donors. If that increased by 25 percent, that’s another 1,466 donors per year.
Since each kidney donation increases the recipient’s lifespan by about 10 years, that’s nearly 15,000 life-years that could be saved, every single year, with a simple policy that Congress absolutely does not need to do anything to adopt.
There is no small-government conservative case against this change; it would not, on its own, increase appropriations for the program (though I think increasing appropriations would be a good idea). It would just expand the kind of help that NLDAC can provide with its existing budget.
Waitlist Zero has been pushing this change, and Rep. Matt Cartwright (D-PA), a leader in Congress on kidney issues, is on board. Curiously, the National Kidney Foundation, perhaps the most high-profile nonprofit working on kidney issues, has declined to back this modest change. Troy Zimmerman, the group’s vice president of government relations, told me on the record that the group “supports the concept of paid leave for living donors but has not taken a position on this specific proposal.”
Their reluctance to vocally support this move is puzzling and frustrating. Letting NLDAC cover lost wages is a very modest change that would clearly help people, and move us closer to a world where there are finally enough donors to end the waitlist of people whose lives depend on a kidney transplant.
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