Policy Strategies to Reduce Financial Risks for Living Donors

Each year, approximately 6000 living persons in America donate a kidney to help a family member, a friend, or even a stranger and a growing number of people serve as living liver donors.^1,2 The primary beneficiaries of these donations are, inherently, their recipients, who experience improved survival, quality of life, and employability after receiving a transplant. The financial benefits to payers, transplant hospitals, and society are also large. In the case of RRT, living donor transplantation is dramatically cost-effective and cost-saving, leading to an overall per-transplant cost savings of approximately $100,000 over 10 years and a savings of over $30,000 per quality-adjusted life year compared with chronic dialysis.³ Living donor transplantation, therefore, has several unique features among medical treatments, in that it simultaneously saves both lives and money—but strikingly, accrual of these benefits requires risk-taking by the only involved party who receives no direct benefits: living donors themselves.

With rare exceptions, living donors in the United States and internationally are prohibited from receiving compensation for their donations. Although advocates for the protection of living donors have long aimed to minimize the negative consequences of living kidney donation and make donation a financially neutral event, insufficient progress has been made on reducing the economic sequelae of donation. Limited data from 2011 to 2013 indicate that the mean direct cost (i.e., out-of-pocket payment) incurred by living donors in the United States was approximately $1200, including costs ranging from travel and lodging to medication and excluding substantial indirect costs (i.e., secondary incurred costs not resulting from consumption of a resource), such as lost income, decreased productivity, and decreased access to life insurance and disability insurance.⁴ In addition to harming donors directly, these costs pose financial barriers to living donation that reduce the number of available donors, particularly those whose potential recipients have sociodemographic characteristics associated with disparities in access to living donor transplantation.^2,5 Several pathways to achieving financial neutrality for living donors require increased support to fulfill their intended goals (Figure 1).⁶

Figure 1.

Financial risks to living donors across the donation process and potential policy and advocacy solutions. FMLA, Family and Medical Leave Act. LDPA, living donor protection act; NLDAC, National Living Donor Assistance Center; QALY, quality-adjusted life year.

One straightforward mechanism of eliminating the direct costs incurred by living donors is prepayment or reimbursement by government- or transplant system-funded entities. In the United States, the National Living Donor Assistance Center (NLDAC) currently serves this role. NLDAC is federally funded by the Health Resources and Services Administration and aims to reduce financial barriers to donation, at a federal cost savings of $256 million from 2012 to 2015 alone.⁷ Donors may apply for reimbursement for travel and lodging expenses as well as the costs of both dependent care and lost wages for up to 3 days for the donor evaluation and 4 weeks for recovery after donation surgery.⁸ However, despite assisting 18.9% of US living donors in 2022 with its annual budget over $9 million, the reach of NLDAC has key limitations. To be eligible for NLDAC assistance, donors must be citizens or lawful residents of the United States, have a primary residence in the Unites States, and travel from their primary residence to their transplant center. Furthermore, NLDAC covers only one donor candidate at a time, with a maximum of three donors evaluated per recipient overall and a reimbursement cap of $6000 that has not risen since the inception of NLDAC. Finally, except for recent changes for nondirected donors, donor and recipient candidates must submit household income data for recipient means testing at a threshold of 350% of the federal poverty level because NLDAC is charged with aiding individuals for whom donation cannot be supported by other mechanisms, including state support or recipient reimbursement of expenses.

Policy and funding changes could expand NLDAC's effect to both fulfill a moral obligation to achieve financial neutrality for donors and increase the number of cost-saving living donor transplants that can be performed. Raising the support cap above $6000 may help a large minority of donors, given that 21% of individuals who donated with NLDAC support in 2021 approached the spending cap, suggesting that they could have benefitted from additional assistance if it were available (personal communication: Marie-Claire Walters, NLDAC Senior Coordinator). Legislation automatically raising this cap annually on the basis of inflation would also ensure an appropriate degree of support over time. NLDAC support might also be expanded to assist international donors to US residents,⁹ given that the US government's cost savings from living donation is not dependent on the donor’s country of residence. Furthermore, the requirement for recipient means testing is rooted in outdated presumptions that most donors are related to their recipients biologically or by marriage. Even in the case of related individuals, recipients with incomes just above the 350% of the federal poverty level threshold—totaling $69,020 for a household of two⁸— may lack the financial resources to reimburse thousands of dollars in donation-related costs. The true extent of these limitations are likely obscured by NLDAC underutilization and center-level heterogeneity in referral: Over a recent 2-year span, NLDAC applicants ranged from 0 to 133 across US centers, translating to 2%–39% NLDAC use by donors across centers.¹⁰ In addition, approximately 89% of NLDAC applicants are approved. Given the burden of transportation and lodging costs for living donors, legislation that facilitates performance of evaluation testing close to the donor candidate's home—such as eliminating barriers to cross-state telehealth evaluations—may also help reduce direct costs related to donation.

Beyond direct costs at the time of evaluation and donation, living donors may incur long-term costs that include higher rates of denial and/or higher premiums for life, disability, and long-term care insurance. There are also no federal protections against job loss resulting from donation-related leave or temporary reduction in productivity after donation. Unfortunately, federal efforts to address these indirect costs have been unsuccessful to date. Despite bipartisan sponsorship, the Living Donor Protection Act (LDPA) has repeatedly failed to be signed into law since its first introduction in the 113th Congress approximately 10 years ago. The provisions of LDPA aim to (1) prohibit insurance companies from using living donor status to deny coverage, limit coverage, or raise premiums; (2) specifically include living donation as a serious health condition eligible under the Family and Medical Leave Act of 1993; and (3) encourage HHS to use these changes to help increase living organ donation. Most recently, the bill failed to advance in the 117th Congress despite 161 House cosponsors and 43 Senate cosponsors across political parties. The bill was reintroduced into the 118th Congress with bipartisan support in April 2023.

In the meantime, state-level initiatives have sought to provide some living donor protections. To date, 28 states have passed LDPA-adjacent legislation against insurance discrimination. However, important limitations of these laws include a loss of protection if donors move out of a covered state and the inability of state laws to address Family and Medical Leave Act coverage. Additional support for living donors has come from private sector partnerships: The American Society of Transplantation launched the Living Donor Circle of Excellence initiative, publicly celebrating employers who offer paid leave policies for living donors. The National Kidney Registry's Donor Shield offers financial protections to donors in its program, including a $500,000 life insurance policy covering the first postdonation year, disability insurance, legal support in the case of wrongful termination or insurance loss, wage reimbursement up to $1500 weekly, and travel reimbursement. The Department of Veterans Affairs National Transplant Program has also implemented reimbursement of travel and temporary lodging expenses for living donors plus one support person per donor. The heterogeneous access to such protections for donors amplifies the need for robust counseling early in the donor evaluation process to discuss the direct and indirect costs stemming from evaluation and donation, including referral to the American Society of Transplantation's Living Donor Toolkit (https://www.livingdonortoolkit.com/), a comprehensive resource for donors.

Given the large benefits realized by recipients, health care providers, and payers—particularly the federal government—from living donation, the implementation of policies to reduce financial disincentives and risks for living donors might seem like a foregone conclusion. However, as the limitations placed on NLDAC and the failure of the federal LDPA to pass to date demonstrate, even common-sense, cost-saving, and broadly supported living donor protections are difficult to achieve in the current complex legislative environment. Despite these challenges, federal, state, and local efforts to reduce the negative consequences of living donation and make donation a financially neutral event for donors must vigorously continue to safely and responsibly advance opportunities for healthy, willing persons to share the gift of life.

Disclosures

S.A. Husain reports the following: Research Funding: Nelson Family Foundation; Honoraria: Fresenius; and Other Interests or Relationships: member of the AST Kidney Pancreas COP Policy workgroup. K.L. Lentine reports the following: Consultancy: CareDx, Inc.; Ownership Interest: CareDx, Inc.; Speakers Bureau: Sanofi; Advisory or Leadership Role: chair of the American Society of Transplant (AST) Living Donor Community of Practice (COP), member of the American Society of Nephrology Policy and Advocacy Committee, member of the National Kidney Foundation Transplant Advisory Committee, member of the NLDAC Advisory Group, scientific director of the SRTR Living Donor Collective, and senior scientist of the Scientific Registry of Transplant Recipients (SRTR); and Other Interests or Relationships: member of the AST Kidney Pancreas COP Policy workgroup.

Funding

S.A. Husain is supported by Faculty Development Grant from the Nelson Family Foundation and by the National Institute of Diabetes and Digestive and Kidney Diseases (grant K23 DK133729). K.L. Lentine receives research funding related to transplant from the National Institutes of Health (R01DK120551) and is supported by the Mid-America Transplant/Jane A. Beckman Endowed Chair in Transplantation.

Author Contributions

Conceptualization: Krista L. Lentine, Syed Ali Husain.

Funding acquisition: Krista L. Lentine, Syed Ali Husain.

Project administration: Krista L. Lentine, Syed Ali Husain.

Writing – original draft: Krista L. Lentine, Syed Ali Husain.

Writing – review & editing: Krista L. Lentine, Syed Ali Husain.