Best practices to optimize utilization of the National Living Donor Assistance Center for the financial assistance of living organ donors

Living organ donors face direct costs when donating an organ, including transportation, lodging, meals, and lost wages. For those most in need, the National Living Donor Assistance Center (NLDAC) provides reimbursement to defray travel and subsistence costs associated with living donor evaluation, surgery, and follow-up. While this program currently supports 9% of all US living donors, there is tremendous variability in its utilization across US transplant centers, which may limit patient access to living donor transplantation. Based on feedback from the transplant community, NLDAC convened a Best Practices Workshop on August 2, 2018, in Arlington, VA, to identify strategies to optimize transplant program utilization of this valuable resource. Attendees included team members from transplant centers that are high NLDAC users; the NLDAC program team; and Advisory Group members. After a robust review of NLDAC data and engagement in group discussions, the workgroup identified concrete best practices for administrative and transplant center leadership involvement; for individuals filing NLDAC applications at transplant centers; and to improve patient education about potential financial barriers to living organ donation. Multiple opportunities were identified for intervention to increase transplant programs’ NLDAC utilization and reduce financial burdens inhibiting expansion of living donor transplantation in the United States. Living organ donors face direct costs when donating an organ, including transportation, lodging, meals, and lost wages. For those most in need, the National Living Donor Assistance Center (NLDAC) provides reimbursement to defray travel and subsistence costs associated with living donor evaluation, surgery, and follow-up. While this program currently supports 9% of all US living donors, there is tremendous variability in its utilization across US transplant centers, which may limit patient access to living donor transplantation. Based on feedback from the transplant community, NLDAC convened a Best Practices Workshop on August 2, 2018, in Arlington, VA, to identify strategies to optimize transplant program utilization of this valuable resource. Attendees included team members from transplant centers that are high NLDAC users; the NLDAC program team; and Advisory Group members. After a robust review of NLDAC data and engagement in group discussions, the workgroup identified concrete best practices for administrative and transplant center leadership involvement; for individuals filing NLDAC applications at transplant centers; and to improve patient education about potential financial barriers to living organ donation. Multiple opportunities were identified for intervention to increase transplant programs’ NLDAC utilization and reduce financial burdens inhibiting expansion of living donor transplantation in the United States. Over the last 15 years, there has been a significant body of evidence indicating that living donors incur significant direct and indirect costs in the process of living donor evaluation, surgery, and postsurgery follow-up.1Barnieh L Collister D Manns B et al.A scoping review for strategies to increase living kidney donation.Clin J Am Soc Nephrol. 2017; 12: 1518-1527Crossref PubMed Scopus (36) Google Scholar, 2Barnieh L Kanellis J McDonald S et al.Direct and indirect costs incurred by Australian living kidney donors.Nephrology. 2018; 23: 1145-1151Crossref PubMed Scopus (4) Google Scholar, 3Barnieh L Klarenbach S Arnold J et al.Nonreimbursed costs incurred by living kidney donors.Transplantation. 2019; 103: e164-e171Crossref PubMed Scopus (8) Google Scholar, 4Barnieh L McLaughlin K Manns BJ et al.Barriers to living kidney donation identified by eligible candidates with end-stage renal disease.Nephrol Dial Transplant. 2011; 26: 732-738Crossref PubMed Scopus (42) Google Scholar, 5Clarke KS Klarenbach S Vlaicu S Yang RC Garg AX Donor Nephrectomy Outcomes Research (DONOR) NetworkThe direct and indirect economic costs incurred by living kidney donors-a systematic review.Nephrol Dial Transplant. 2006; 21: 1952-1960Crossref PubMed Scopus (97) Google Scholar, 6Gill JS Gill J Barnieh L et al.Income of living kidney donors and the income difference between living kidney donors and their recipients in the United States.Am J Transplant. 2012; 12: 3111-3118Crossref PubMed Scopus (29) Google Scholar, 7Habbous S Sarma S Barnieh LJ et al.Healthcare costs for the evaluation, surgery, and follow-up care of living kidney donors.Transplantation. 2018; 102: 1367-1374Crossref PubMed Scopus (12) Google Scholar, 8Klarenbach S Garg AX Vlaicu S. Living organ donors face financial barriers: a national reimbursement policy is needed.CMAJ. 2006; 174: 797-798Crossref PubMed Scopus (28) Google Scholar, 9Klarenbach S Gill JS Knoll G et al.Economic consequences incurred by living kidney donors: a Canadian multi-center prospective study.Am J Transplant. 2014; 14: 916-922Crossref PubMed Scopus (71) Google Scholar, 10Klarenbach S Vlaicu S Garg AX. Reimbursing living organ donors for incurred costs.Am J Transplant. 2007; 7 (author reply 9-10.): 1308Crossref PubMed Scopus (3) Google Scholar, 11Mathur AK Xing J Dickinson DM et al.Return on investment for financial assistance for living kidney donors in the United States.Clin Transplant. 2018; 32: e13277Crossref PubMed Scopus (8) Google Scholar Direct costs incurred may include transportation and lodging, food and subsistence, uncovered medical expenses, and other incidental expenses, which may total up to $3000 or more.9Klarenbach S Gill JS Knoll G et al.Economic consequences incurred by living kidney donors: a Canadian multi-center prospective study.Am J Transplant. 2014; 14: 916-922Crossref PubMed Scopus (71) Google Scholar,12Rodrigue JR LaPointe RD Hays R. American Society of T. Living donor kidney transplantation: best practices in live kidney donation–recommendations from a consensus conference.Clin J Am Soc Nephrol. 2015; 10: 1656-1657Crossref PubMed Scopus (11) Google Scholar, 13Tushla L Rudow DL Milton J et al.Living-donor kidney transplantation: reducing financial barriers to live kidney donation–recommendations from a consensus conference.Clin J Am Soc Nephrol. 2015; 10: 1696-1702Crossref PubMed Scopus (73) Google Scholar, 14Rodrigue JR Kazley AS Mandelbrot DA et al.Living donor kidney transplantation: overcoming disparities in live kidney donation in the US–recommendations from a consensus conference.Clin J Am Soc Nephrol. 2015; 10: 1687-1695Crossref PubMed Scopus (76) Google Scholar Indirect costs may include lost wages, use of paid time off, child and dependent care expenses, and risks to job stability.12Rodrigue JR LaPointe RD Hays R. American Society of T. Living donor kidney transplantation: best practices in live kidney donation–recommendations from a consensus conference.Clin J Am Soc Nephrol. 2015; 10: 1656-1657Crossref PubMed Scopus (11) Google Scholar, 13Tushla L Rudow DL Milton J et al.Living-donor kidney transplantation: reducing financial barriers to live kidney donation–recommendations from a consensus conference.Clin J Am Soc Nephrol. 2015; 10: 1696-1702Crossref PubMed Scopus (73) Google Scholar, 14Rodrigue JR Kazley AS Mandelbrot DA et al.Living donor kidney transplantation: overcoming disparities in live kidney donation in the US–recommendations from a consensus conference.Clin J Am Soc Nephrol. 2015; 10: 1687-1695Crossref PubMed Scopus (76) Google Scholar The presence of these substantial costs indicates that living donation is not a financially neutral act, despite the presence of overwhelming altruism on the part of the donor. These costs act as a disincentive to living donation and may prevent many individuals from coming forward as donors at all, thus reducing access to living donor transplantation. This prompted the development of a federally funded program in the early 2000s to address some of these costs, namely, direct costs associated with travel and subsistence for living donors in the United States.15Warren PH Gifford KA Hong BA Merion RM Ojo AO. Development of the National Living Donor Assistance Center: reducing financial disincentives to living organ donation.Prog Transplant. 2014; 24: 76-81Crossref PubMed Scopus (37) Google Scholar Federal Law (42 USC § 274f) allows for the Secretary of Health and Human Services (HHS) to reimburse travel and subsistence expenses incurred by individuals toward living organ donation. The Health Resources and Services Administration (HRSA) issued a request for applications in 2006 for an entity to establish and operate a national system to provide financial assistance to living donors. This laid the foundation for the development of the National Living Donor Assistance Center (NLDAC) in 2007 by a multi-institutional consortium, after consideration of federal legislation,16National Organ Transplant Act. Pub. L. 98–507. 1984. https://uslaw.link/citation/us-law/public/98/507. Accessed November 20, 2019.Google Scholar,17Organ Donation and Recovery Improvement Act of 2004. Pub. L. 108–216. 2004:118 STAT 583–90. U.S. Congress. https://www.congress.gov/108/plaws/publ216/PLAW-108publ216.pdf. Accessed November 20, 2019.Google Scholar public comments on program design in the Federal Register,18Reimbursement of Travel and Subsistence Expenses Toward Living Organ Donation Proposed Eligibility Guidelines. Federal Register. 2007:17564–17566.Google Scholar and intensive collaboration with HRSA. Since 2007, the program has been continuously funded by HRSA and has helped facilitate nearly 5000 living donor transplants by supplying more than $18 million to cover travel costs incurred by living donors during evaluation, surgery, and follow-up appointments (Table 1), and is associated with significant federal cost savings from reduced dialysis utilization.11Mathur AK Xing J Dickinson DM et al.Return on investment for financial assistance for living kidney donors in the United States.Clin Transplant. 2018; 32: e13277Crossref PubMed Scopus (8) Google Scholar The current consortium operating the program includes personnel from the University of Kansas, Arbor Research Collaborative for Health, Washington University in St. Louis, the Mayo Clinic, and the American Society of Transplant Surgeons (ASTS).TABLE 1NLDAC program application data and outcomes 2007-2019NLDAC 10/01/2007-8/31/2019FY 08FY 09FY 10FY 11FY 12FY 13FY 14FY 15FY 16FY 17FY 18FY 19Program totalApplicationsTotal applications received (n)257509566745881960939954944883104910559742Approved85.2%88.4%88.0%91.8%89.8%91.9%89.8%89.8%88.2%87.2%88.0%85.8%88.7%Denied3.9%3.5%3.5%2.8%5.0%4.3%4.7%4.8%7.6%7.9%7.5%7.9%5.3%Withdrawn10.9%8.1%6.9%5.4%5.2%3.6%0.0%5.3%4.1%4.9%4.5%5.0%5.3%Preference category 166.5%63.5%72.3%71.3%67.0%71.5%64.6%63.8%57.7%54.8%53.1%53.9%63.3%Preference category 21.6%2.0%0.4%0.0%0.1%0.0%0.1%0.0%0.0%0.0%0.0%0.0%0.3%Preference category 314.4%15.3%13.6%15.6%16.1%15.4%19.1%20.2%23.3%26.3%28.7%26.7%19.6%Preference category 417.5%19.3%13.8%13.2%16.8%13.1%16.2%15.9%19.0%18.9%18.2%19.3%16.8%Kidney donor95.7%95.1%92.2%92.3%95.0%95.1%94.0%92.3%90.8%90.9%90.6%88.4%92.7%Liver donor3.9%4.9%7.2%7.7%5.0%4.8%6.0%7.7%9.2%9.1%9.4%11.6%7.2%Total NLDAC paid for donor travel (in thousands $USD)$258$711$885$1335$1575$1835$1764$1902$1860$1765$2043$2238$18 171Outcomes of NLDAC supportDonor surgery complete (n)1463022883914555284905345464935784585209Donor surgery ruled out at transplant center (n)701442122883273293063082702412511502896Donor surgery pending (n)00000154110143389316518Application withdrawn (n)284138424636544438434750507Application not approved (n)101821214442444669707579539Approved but filed too late to fund (n)2473910412739272FY, fiscal year; NLDAC, National Living Donor Assistance Center; USD, US dollars. Open table in a new tab FY, fiscal year; NLDAC, National Living Donor Assistance Center; USD, US dollars. It is legally permissible for the recipient to support direct and indirect costs incurred by living organ donors.16National Organ Transplant Act. Pub. L. 98–507. 1984. https://uslaw.link/citation/us-law/public/98/507. Accessed November 20, 2019.Google Scholar,17Organ Donation and Recovery Improvement Act of 2004. Pub. L. 108–216. 2004:118 STAT 583–90. U.S. Congress. https://www.congress.gov/108/plaws/publ216/PLAW-108publ216.pdf. Accessed November 20, 2019.Google Scholar NLDAC is designed as a payer of last resort for travel and subsistence-related costs. NLDAC was conceived as a means-tested prospective reimbursement program to address travel and subsistence costs, benchmarked against the recipient’s income, as the primary beneficiaries of the program are those in need of a transplant. Preference categories were designed to operationalize the transplant candidate’s ability to pay as required by the program authority (Figure 1). The current threshold for recipient income is 300% of the federal poverty level (FPL) based on household size.19Annual Update of the HHS Poverty Guidelines.in: Services HaH, ed. Federal Register, Washington, DC2019: 1167-1168Google Scholar Current data indicate the average household income for recipients linked to NLDAC applicants is $27 536, with a household number of 2.6. Importantly, this threshold encompasses 50% of US households. HRSA currently allocates funding for the program, including funds for reimbursement and program administration; NLDAC reimbursement is capped at $6000 per individual. Importantly, current exclusions to the program include the presence of another party able/willing to cover donor travel expenses, if donors and recipients are not lawfully admitted to the United States, or if their permanent residence is outside the United States. The eligibility and exclusion criteria are outlined at http://www.livingdonorassistance.org. For an individual to access NLDAC support, they must begin the process to become a living donor at a transplant center. Living kidney donors, liver donors, and uterus donors are eligible. Urgent living donor liver applications are also possible if needed based on recipient condition. Transplant centers typically have 1 or more individuals who file NLDAC applications, most commonly transplant social workers, financial counselors, or living donor coordinators. Applications may be filed online with NLDAC to of the living donor evaluation, or at in the process individuals support the of a with funds The NLDAC a of as individuals may have in a reimbursement program they or access to L. a new for PubMed Scopus Google Scholar These may be at some for travel and subsistence-related costs, including lodging, and may be in the the and for living donor follow-up for the donor and a Since 2007, NLDAC has been to living in NLDAC 9% of all US living donor kidney et data J Transplant. 2018; PubMed Scopus Google Scholar The in NLDAC program use is of (Table 1). of August NLDAC applications have been applications are filed per associated with of million in support in (Table 1). The of applications that were approved for financial support was of applications were typically to to income criteria or a to financial approved applications, were to support kidney donors, with a of applications for liver donors in While this is there has been in use of the program across transplant centers (Figure Over a NLDAC applications filed per program with living donor transplant but a of utilization by individual was (Figure The number of NLDAC applications per program this was across a of living donor transplant per years, living donor transplant living donor transplants in a NLDAC utilization from 2Barnieh L Kanellis J McDonald S et al.Direct and indirect costs incurred by Australian living kidney donors.Nephrology. 2018; 23: 1145-1151Crossref PubMed Scopus (4) Google L Klarenbach S Arnold J et al.Nonreimbursed costs incurred by living kidney donors.Transplantation. 2019; 103: e164-e171Crossref PubMed Scopus (8) Google Scholar to 2Barnieh L Kanellis J McDonald S et al.Direct and indirect costs incurred by Australian living kidney donors.Nephrology. 2018; 23: 1145-1151Crossref PubMed Scopus (4) Google Scholar in use of the NLDAC a need for engagement with the transplant and education of transplant NLDAC is funded a federal is that all eligible individuals living donor about the NLDAC and have access to its funding The of the NLDAC Best Practices Workshop in August was to provide a for transplant to their and for filing NLDAC The from the was to a best practices transplant their to optimize use of these valuable for living donors. to in the were to transplant from transplant of transplant included social and financial The NLDAC program team criteria for by NLDAC application as as the of NLDAC applications to living donor transplant based on NLDAC program and transplant center in the were but from transplant with a living donor transplant with high of living donor transplantation. 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The NLDAC program this an that may not be in the best to file applications they have with the an file applications, they need assistance and support from other team members to the needed from the transplant center that allows the recipient to pay for the living and lost a to transplant team members about NLDAC and the application federal poverty living donor NLDAC, National Living Donor Assistance Center; National Organ Transplant United for Organ Open table in a new tab federal poverty living donor NLDAC, National Living Donor Assistance Center; National Organ Transplant United for Organ workers, transplant financial administrative living donor and other transplant file NLDAC are in a to identify and to the application The most barriers are eligibility and application and income to file the are many that but between team members is liver transplant program all the transplant recipient to complete the NLDAC application a donor is the recipient of the is and the eligibility be best practices are in practices for NLDAC application at transplant recipient social about NLDAC eligibility an education for all recipients to about a system to all recipients for NLDAC eligibility and a to the with other members of the transplant a system to the recipient’s household income to the application education to transplant about the application with donors about the not on a to be of a of when application are received and in to up on application to the recipient income and donor eligibility in the recipient’s medical other team members access the time in the application process to donors and recipients to income complete application and the to the transplant donors and recipients that allows the recipient to pay for a and lost National Living Donor Assistance Center; National Organ Transplant Act. 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Living organ donors face financial barriers: a national reimbursement policy is needed.CMAJ. 2006; 174: 797-798Crossref PubMed Scopus (28) Google Scholar, 9Klarenbach S Gill JS Knoll G et al.Economic consequences incurred by living kidney donors: a Canadian multi-center prospective study.Am J Transplant. 2014; 14: 916-922Crossref PubMed Scopus (71) Google Scholar, 10Klarenbach S Vlaicu S Garg AX. Reimbursing living organ donors for incurred costs.Am J Transplant. 2007; 7 (author reply 9-10.): 1308Crossref PubMed Scopus (3) Google AK Xing J Dickinson DM et al.Return on investment for financial assistance for living kidney donors in the United States.Clin Transplant. 2018; 32: e13277Crossref PubMed Scopus (8) Google Scholar The national program in the United that provides financial support for a is It is that NLDAC utilization transplant centers is Transplant center are best to identify which need with travel expenses and to this federally funded support is to those who are eligible.

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