DATE: November 3, 2024

November 3, 2024

By Dr. Rebecca Schmidt Assistant Dean for Outreach and Community Engagement for West Virginia University School of Medicine and Professor of Medicine in the Division of Nephrology for the Department of Medicine at WVU

Kidney disease is a silent epidemic in West Virginia and across the United States, affecting the lives of millions. For those who need dialysis or a kidney transplant, their reality becomes a grueling cycle of hospital visits, medications, and uncertainty. For thousands of these Americans, the wait for a kidney is not just a matter of time—it is a matter of life and death.

As a nephrologist, I see firsthand the burden carried by patients awaiting kidney transplants. Many of them endure long, painful waits, and unfortunately, too many die without ever receiving the life-saving kidney which they need. Currently, over 93,000 Americans are on the kidney transplant waiting list, with more in need but not yet listed. In 2023, over half of the states in the U.S. (27) fell under the national average for living kidney donation.

West Virginia shares this low rate of living kidney donation with many Appalachian states. And overall, less than a third of all transplants in the US are from living donors, and over the past two decades, live kidney donations have not increased. This stagnation in living donor kidney transplantation occurs despite our knowledge that kidneys from live donors offer better outcomes, including longer survival times and lower risks of complications. So, it is time for a change.

Across the nation, there is a lack of awareness and a substantial combination of barriers— financial, logistical, and personal—that prevent potential donors from coming forward. In West Virginia, the geographic and economic circumstances that many residents face include those common to rural communities which often have no resources necessary to navigate the complicated transplant process. Nationwide, we’ve seen a significant racial disparity in transplant rates: Black and Hispanic patients are less likely to receive kidney transplants compared to their white counterparts, even though they are more likely to suffer from end-stage kidney disease (ESKD) needing kidney replacement therapy. Addressing these social, economic and racial disparities across the country is not only a medical necessity but also a moral imperative.

The Centers for Medicare & Medicaid Services’ (CMS) proposed Increasing Organ Transplant Access (IOTA) Model is a step in the right direction. This new payment model aims to expand kidney transplant access by addressing key barriers to living kidney donation, including providing navigators to help both recipients and donors through the process. These navigators can guide potential donors through screenings, testing, and the transplant itself—steps that are often daunting without adequate support. By adopting successful small navigator programs like those at the University of Alabama at Birmingham and Johns Hopkins University, we could extend needed support across rural states like West Virginia and even nationwide, making a real difference in the lives of those waiting for a transplant.

Financial concerns are among the greatest obstacles facing potential living donors. The National Living Donor Assistance Center (NLDAC) provides financial support to low-income individuals, reimbursing travel, lodging, and other related expenses. However, these supports do not cover all the costs associated with donation and are available only to those donors whose recipients financially qualify. Under the IOTA Model, CMS could fully cover all out-of pocket expenses for donors to ensure that financial burdens do not prevent willing individuals from stepping forward. Donors should not be penalized for their generosity.

The stories of patients and families in West Virginia illustrate the pressing need for change. One of the lucky ones, my husband, was fortunate to have 11 siblings and many willing donors; he received a kidney from his sister. However, as a nephrologist, I am acutely aware of too many individuals who, despite having a potential donor, cannot proceed with transplant evaluations or procedures due to economic hardship. Too many families cannot afford to travel to a transplant center or take time off from work for the testing and hospitalization needed to be a kidney donor. These and other situations are all too familiar and can be corrected with appropriate legislation.

West Virginia needs policies that ensure every patient is given a real chance at life. Proposed federal legislation called the LOVE Act represents a crucial step by creating a national support system for living donors by addressing the challenges that currently prevent people from giving a kidney. Supporting living donors means supporting families, saving lives, and ensuring that fewer individuals must endure the prolonged suffering of dialysis to sustain life. The measures in this proposed LOVE Act are crucial in encouraging more people to step forward as living kidney donors by reducing financial and logistical barriers.

The lack of living donors is a national issue, but the impact is deeply personal for the families involved. ESKD affects not only the patient but also the entire family and community. It is not uncommon for patients on dialysis to experience depression, isolation, and financial hardship as they try to maintain their health while managing daily responsibilities. Living kidney donation provides hope and an opportunity for ESKD patients to return to normal lives.

It is time we break down the barriers that prevent potential donors from coming forward. Both the IOTA Model and the LOVE Act offer hope by addressing the financial and logistical challenges of living donation. But to make this a reality, we need the support of healthcare professionals, lawmakers, and the general public. It is time to ensure that every individual, regardless of their background or financial situation, has the opportunity to give and receive the gift of life.

Living donation is a profoundly generous act that deserves our utmost support. Let us work together to increase awareness, reduce financial and logistical obstacles, and ultimately save more lives through living kidney donation. The people of West Virginia, and indeed all across our nation, deserve nothing less.