Amit K. Mathur, MD, MS
Consultant, Division of Transplant Surgery, Mayo Clinic in Arizona
Assistant Professor of Surgery, Mayo Clinic School of Medicine
Program Evaluation Specialist, National Living Donor Assistance Center
As transplant professionals engaged in living donor transplantation, we come across the same story every day. We evaluate and list a transplant candidate, who begins the long wait on the deceased donor waiting list because they do not have a living donor. We are all too familiar with the risk of waitlist mortality – to our patients and our programs. Even more frustrating than the lack of a living donor is watching a perfectly good living donor be ruled out, or maybe never even come forward. Many of these individuals are fit enough to donate, want to donate, but are unable to do so because they lack the resources to be evaluated, to subsist after surgery, and struggle with even getting to the transplant center. The associated costs are often uncovered by recipient insurance. Without financial assistance to support living donors, we are often caught offering patients a less optimal therapy than they could have availed through a living donor transplant.
One of the most helpful resources to help potential living donors is The National Living Donor Assistance Center (NLDAC). NLDAC provides financial support for travel and subsistence costs to support living donor evaluation, surgery, and after care for up to two years. NLDAC has been continuously supported by federal funds awarded by the Division of Transplantation, Healthcare Systems Bureau, Health Resources and Services Administration (HRSA). The program is cooperatively administered by the ASTS and the University of Arizona, owing to the tireless efforts of our dedicated program staff working with potential donors. The program is also supported through the efforts of individuals from a consortium of institutions including Arbor Research Collaborative for Health, Washington University in Saint Louis, and the Mayo Clinic.
NLDAC celebrated its 10th anniversary in 2017. Since its inception (as of November 2017), NLDAC has received nearly 8,000 applications, has provided more than $14.3 million dollars, which has culminated in 4,156 living donor transplants.
NLDAC now supports nearly 10% of all living donors in the United States.
Based on surveys of donors who have used NLDAC, 75% state that they could not have donated without financial assistance from NLDAC. This is quite astounding, given that the average amount spent per application received is $1,737.
96% of transplant centers have filed applications on behalf of living donors, but there is tremendous variation in the use of the program among centers. Here is an outline of the NLDAC program, how it works, and how your program can access these resources for living donors.
What is the legal basis for NLDAC?
The funds issued by NLDAC do not constitute payment for profit. The National Organ Transplant Act of 1984 (NOTA) and the Organ Donation and Recovery Improvement Act of 2004 (ODRIA) are the federal legal precedents that have established many of the regulations surrounding transplant and organ donation activity in the United States. NOTA specifically prohibits individuals from receiving “valuable consideration” for donating organs, i.e. people cannot profit specifically for donating an organ. However, expenses incurred related to travel, subsistence, and other non-medical expenses can be provided. This is specifically authorized in ODRIA, and is the basis for the NLDAC program and funds provided to a potential living donor through NLDAC do not constitute a profit for that individual. More information on this is available at http://www.livingdonorassistance.org.
Who is eligible for financial support from NLDAC?
The program is designed to be a payer of last resort. If other public or private programs (or funds from the recipients) are accessible to potential donors to help support travel and subsistence costs, those should be used.
If no other funds exist, NLDAC has specific eligibility guidelines based primarily on recipient income relative to the federal poverty guidelines (Figure 1). Donor and recipient income verification is performed as a part of the application process. Since funds are limited for the program on an annual basis, the priority for funding follows Preference Categories. These Preference Categories are centered on where donor and recipient household income (not personal income) fall relative to the 300% threshold of the federal poverty line. The Preference Categories are shown in the Figure. NLDAC is not currently accepting Preference Category 2 applications.
Based on these eligibility guidelines, NLDAC has found that both recipient and donor household average approximately $27,000 - $35,000 per year.
What if the donor and recipient live above the 300% federal poverty line but would still have considerable financial hardship in the donor evaluation process?
These applications will be considered in NLDAC Preference Category 4. There is a portion of the application process for providing proof of financial hardship. These applications are reviewed on an individual basis by the HRSA project officer. Historically, this preference category was underutilized, but now constitutes more than 20% of NLDAC applications.
What expenses qualify for reimbursement? Is there a cap on funds? Is there a cap on donors per recipient?
Currently, NLDAC reimburses travel, lodging, meals, and incidental expenses incurred by the potential donor and an accompanying person as a part of donor evaluation, hospitalization for the living donor surgical procedure, and followup appointments for up to 2 years. The program will pay for a total of five trips, three for the donor and two for the accompanying person. This can be modified if additional visits are required by the transplant center.
The cap on NLDAC funds for a particular donor and accompanying individual is $6000.00. Kidney recipients may have one donor evaluated at a time, with a maximum of three donors total. Liver recipients operate similarly, with a maximum of five donors. Lung recipients may have two donors at a time, with a maximum of six donors total.
Does NLDAC work with paired exchange donors?
NLDAC does operate with paired exchange donors, and the eligibility criteria are based on the originally intended recipient. NLDAC is currently exploring options for non-directed donors.
How quickly are applications processed? How do living donors receive funds from NLDAC?
NLDAC applications are typically initiated by transplant center personnel and directed to us. Once applications are received by NLDAC, the average time for an application decision and to contact the applicant is 5.7 days.
NLDAC issues funds prospectively to potential living donors through a Control Value Card (CVC), administered by American Express. This card resembles a credit card that potential donors can use to purchase airline tickets, pay for gas, hotels, food at restaurants or grocery stores, and other vendors. It takes less than a week to receive the CVC from NLDAC.
How can donors at my center access NLDAC?
NLDAC application forms are available on our website (http://www.livingdonorassistance.org). Educational videos are also available there to help potential donors understand if they qualify and how to apply. Questions can also be directed to NLDAC@livingdonorassistance.org or by calling 1-888-870-5002. You can also follow NLDAC on social media on Facebook, Twitter (@NLDAC_ASTS), and Instagram (@NLDAC)
How does NLDAC help my transplant center?
208 transplant centers have used NLDAC for their potential donors. Utilization of the NLDAC program varies greatly by transplant centers. Transplant center staff may request a report of their activity by completing an electronic request form. Some centers have filed more than 400 applications, and some as few as one application. We would love to see this change, and encourage centers to contact us to help answer questions about eligibility, assistance with applications, or other issues. The NLDAC team holds monthly webinars for transplant professionals to learn about the application process and will provide a webinar for your transplant team on request.
NLDAC is a relatively untapped tool at many centers, and can help centers evaluate more living donors and potentially see growth in their living donor transplant programs.
NLDAC is valuable resource for potential living donors by providing financial assistance for expenses that go uncovered by recipient insurance. Greater awareness of this program may help transplant candidates receive a timely living donor transplant at even greater rates in the future.