Beyond direct donation: what if your friends and family don’t match?

Mayra AlmendarezTransplant News

By Martha Gershun, Guest Blogger 

As a living kidney donor, I often hear from people who have recently been diagnosed with End Stage Renal Disease (ESRD) or have a relative who is a kidney patient.  These patients have usually been given little information about the advantages of living kidney donation and almost no guidance on how to maximize their chances of finding a donor.  Many providers, who are highly experienced in the medical and surgical aspects of the procedure, have limited resources to help patients implement a successful donor search.  Not surprisingly, they do not tell patients that other transplant centers may have a model that offers a better chance of finding them a kidney.

Family and friends often want to help, but finding a match can be hard. Even close biological relatives, such as siblings, may not match.  The odds of a potential donor matching with a non-biological relative or friend can range from 1 in 100 to 1 in 100,000, depending on the patient’s blood type and other immunological markers. Upwards of one-third of willing donors are not compatible matches for their intended recipients.

There are several ways these generous people can still donate to benefit their designated kidney patient.

Many transplant clinics manage their own databases to form kidney pairs or chains, putting together a prospective donor/recipient pair with another donor/recipient pair (or multiple pairs in the case of kidney chains) to form matches.  These heroic efforts can result in several transplants over a very short period of time.  However,  they rely on the hospital to find these matches within their own patient population.

There are also national nonprofits that work to find matches across hospital systems for pair or chain exchanges, significantly expanding the set of possible donors.  The largest of these organizations, the National Kidney Registry (NKR) lists thousands of potential donors. If a kidney patient has a willing donor who is not a match, that person can donate through the National Kidney Registry to generate a voucher, which allows the patient they intend to benefit to receive a matching kidney from someone else on the Registry.  Often these vouchers are “redeemable” within weeks or months, allowing the intended kidney patient to receive a new kidney very quickly.

The National Kidney Registry also has a program called Donor Shield, which provides a multitude of benefits to the donor, including reimbursement for travel, lodging, and dependent care; reimbursement for lost wages; the possible opportunity to donate at a hospital closer to home; home blood draws; and significant support beginning with the medical and psychological evaluation for all prospective donors and extending past the surgery.

Participating in the National Kidney Registry requires the patient to be listed at one of the 102 Transplant Clinics that are paying members of the National Kidney Registry.

The Alliance for Paired Kidney Donation (APKD) does similar work, facilitating paired or chain exchanges through its network of transplant clinics in 24 states. Donors who donate as part of an APKD kidney exchange are eligible for a robust package of support and protections that include wage reimbursement; travel expense reimbursement; and donor and companion life, disability, and complication insurance.  Non-directed donors also receive APKD’s KidneyPledge, which comes in several forms, including an Advanced Donor Pledge, which will provide the opportunity to participate in an APKD kidney exchange for one named individual with known kidney disease, for the life of the named individual.

The benefits to this process are so significant – for the patient, who will likely find a living donor much faster, and for their donor, who will have the benefits of NKR’s Donor Shield or APKD’s KidneyPledge, that I encourage kidney patients to seek out a transplant clinic that is affiliated with one of these nonprofits, even if they are already listed elsewhere or have to travel to do so.

Finding a living donor can be difficult, but staying creative, flexible, and persistent can make it easier.

Martha Gershun is a nonprofit consultant and writer living in Fairway, KS with her husband Don Goldman. Her most recent book, Kidney to Share (Cornell University Press, 2021), with co-author John Lantos, MD, details her experience donating a kidney at the Mayo Clinic to a woman she read about in the newspaper. Gershun serves on the Expert Advisory Panel for the Kidney Transplant Collaborative and serves on the Board of the National Kidney Foundation Serving Kansas, Oklahoma, and Western Missouri.