Breaking Down Barriers to Living Donor Organ Transplantation

Living donor organ transplantation remains a small percent of solid organ transplantation in the United States despite being the better option clinically. Just 23% of kidney transplants and 6% of liver transplants involved a living donor in 2023, according to Organ Procurement and Transplantation Network (OPTN) data.

“Compared to deceased donor transplantation, there has been little growth nationally in living donation over the past decade,” reports Neerja Agrawal, MD, Medical Director of Kidney Transplant and Director of the Living Donor Kidney Transplant Program at Cleveland Clinic Weston Hospital. “But there are many initiatives trying to move the needle on living donation so that we can save more lives.”

The Transplant Center at Cleveland Clinic Weston Hospital is part of an industrywide effort to break down barriers to living donation. It is one of only two centers in Florida currently performing both living donor kidney and liver transplantations for adult recipients. Since the center’s launch in 2013, the Weston Hospital transplant team has performed over 220 living donor transplantations.

“We’ve made living donation more accessible in the region by broadening eligibility criteria and investing in community outreach,” says Dr. Agrawal. “Still more needs to be done to encourage donation, especially on a national level.”

Opening the eligibility door wider

At a center level, Weston Hospital has made strides to increase access to transplantation by taking on high risk cases that other centers often decline, reports Dr. Agrawal. She points to a 75-year-old patient who received a living donor kidney from his 72-year-old wife as one example. The center also works with patients with obesity who have traditionally had reduced access to kidney transplantation.

“Because of our willingness to tackle complex cases, we’ve reduced waitlist mortality and morbidity while maintaining a high 1-year survival rate among recipients of living donor kidneys,” says Dr. Agrawal.

Notably, the center also performs kidney transplants from living and deceased donors to patients with end-stage renal disease who are HIV positive. “That is especially important here in South Florida where we have a large population living with HIV,” says Dr. Agrawal.

In addition, the Weston Hospital transplant team has extensive experience performing living and deceased donor transplants involving hepatitis C virus (HCV) antibody positive and HCV RNA positive livers and kidneys for HCV negative recipients, shares Xaralambos Zervos, DO, MBA, Department Chair and Medical Director of Liver Transplant at Weston Hospital.

“For cases involving HCV donor organs, we test for the presence of the virus on post-op day 3 and begin therapy with direct-acting antivirals as soon as possible,” explains Dr. Zervos, who specializes in advanced and decompensated liver disease, hepatitis C, and individuals requiring liver transplantation.

“We’re also able to tailor immunosuppression for other comorbidities.”

Greater awareness needed

About 800 patients with end-stage renal disease and approximately 55 patients with end-stage liver disease are currently on the wait list at Weston Hospital’s Transplant Center. Educating the friends and families of these patients of the living donation option is one avenue Cleveland Clinic pursues to increase awareness and encourage donation.

“We’ve hosted educational events in-person and virtually since 2015 through our Living Donor Champion Program,” says Dr. Agrawal. “Plus we meet with dialysis unit teams and their patients and nephrology practices a couple times a month to talk about living donation.”

Weston Hospital is also part of the National Kidney Registry, a paired exchange program that matches living donors with transplant recipients across the United States. “So when one of our patients has a living donor who is not a match, that does not need to be the end of the conversation,” she adds.

Barriers to donation

Because the number of organ donor candidates who go on to donate remains small, there is a national effort to address the roadblocks to living donation.

This past June the OPTN Living Donor Committee issued a report outlining seven key recommendations to enhance living donation nationally. Of those, the committee prioritized reducing systematic barriers for living donors, such as financial and logistical disincentives, and expanding data collection to increase public trust and promote living donor safety.

“Many potential donors don’t make it through the evaluation process, which can involve more than 30 diagnostic tests,” acknowledges Dr. Zervos. “Others can be discouraged by the donor downtime during and after surgery and the time away from work.”

Liver donors usually spend 5 to 7 days in the hospital to monitor for liver regeneration. “It’s truly amazing how rapidly a liver can regenerate, replacing 80-85% of removed volume within a week,” he describes.

Dr. Zervos also points to recipient apprehension as another surprisingly big barrier. “The patient worries for the health and well-being of the donor who is often a loved one,” he says.

In one recent case the son of a woman with end-stage liver disease was ready and cleared to donate. Before the surgery took place, however, a deceased donor liver became available. The patient chose the deceased donor organ to spare her son the risk of surgery.

“Even when we have a living donor lined up, the vetting process continues with deceased donors,” Dr. Zervos explains. “Our goal is to always do what is best for the patient and their family.”

Living donor registry

Data collection is currently underway to better understand the many barriers to living donation and the long-term outcomes of living donors. The Living Donor Collective (LDC) is a national scientific living donor registry launched in 2018 with 10 participating transplant centers. The goal is to gradually expand the LDC to include all living donor programs in the United States.

“I’m hopeful that as we learn more about the reasons individuals choose not to donate we can create national strategies and policies to address those concerns and issues, including making living organ donation a financially neutral process,” says Dr. Agrawal.

Dr. Zervos agrees and also believes long-term outcomes data will help generate greater trust in the safety of living donation, perhaps addressing some recipient apprehension.