Thinking about becoming a living kidney donor but wonder where to start? Maybe you know someone who needs a kidney and don’t know if you’d be a match. Wondering if there’s a central way nationally to register your interest and be guided through the process? Surely there oughta be, but there really isn’t, although kidney registries perform some of that function (see Resources). That may be about to change.
Last week we heard about some exciting developments for both the nearly 100,000 kidney patients waiting for a transplant and people who want to start the process of becoming a living donor. Donate Life America and Fresenius Medical Care Foundation announced that they were teaming up to launch the first-ever national, universal registry of potential living kidney donors and to pilot a simple, at-home saliva-sample test for donors.
Did you know that little more than 20,000 kidney transplants happen in this country in a year (about two-thirds of them have a deceased donor)? That’s not much, and clearly, it’s not enough. There simply aren’t enough eligible deceased donors alone to fill the urgent need. Some patients languish on the waiting lists for 5 to 10 years. For many thousands of them, that’s dangerously long. As a result, each day about 16 people die in this country because they didn’t get a life-saving kidney in time. Every day.
Donate Life is better known for its important work in promoting deceased organ, eye, and tissue donation through the national organization and affiliated state programs. In recent years though, with the pressing need for transplants, it’s expanded its mission into living donation. In North Carolina, for example, I’m a proud member of my local Donate Life NC WELD (Women Encouraging Living Donation) branch and have written a few posts about it–see one example.
If the name Fresenius looks familiar, you probably know it as the huge private dialysis provider. But this is its separately operated nonprofit. The registry is scheduled to be up and running in spring 2020, and not many details have been released. The at-home tests, though, are supposed to be piloted in a few transplant centers between now and February 2020.
Periodically, there’s an outpouring of interest in kidney donation in response to an individual’s publicized need of a kidney. A family member walks around town wearing a sandwich-board or buys space on a billboard to spread their plea. Only some of the people who reach out get tested, and only one becomes the donor. More often than not, those other potential donors just vanish and with them the chance of saving another life. With the exception of some limited experiments, there has been no way to register these people and to capture and direct that interest.
To patients in kidney failure and donation advocates, that lack of direction is a particularly tragic waste of potential. This registry just might make all the difference.