Racial/ethnic and prior willingness disparities in potential living kidney donors’ self-assessed responses to advancing American kidney health regulation

BACKGROUND: Racial/ethnic disparities in living donor kidney transplantation (LDKT) are large, and rates of LDKT may be limited by indirect costs of living donation. A 2019 Executive Order– Advancing American Kidney Health (AAKH)– sought to remove indirect costs through an expanded reimbursement program. We examine how potential living kidney donors in the U.S. believe regulation stemming from the AAKH initiative will impact their living donor evaluation likelihood, how these beliefs vary by minority race/ethnicity and prior willingness to be evaluated, and how differences are explained by ability to benefit or knowledge and attitudes. METHODS: Data from a 2019 online survey (Families of Renal Patients Survey) were used. Respondents are U.S. adult (> 18 years) members of the Qualtrics Survey Panel who reported having relatives with weak or failing kidneys (N = 590). Respondents’ likelihood to be evaluated for living kidney donation are measured by self-report. Prior willingness is measured by past donation-related actions and current attitudes. Ability to benefit is measured by self-reported labor force participation and financial strain. Transplant knowledge is measured by self-report and a knowledge test, and transplant-related attitudes are measured by self-report. Average marginal effects of minority race/ethnicity and prior willingness for response to each provision in fully-adjusted models were estimated. Formal tests of mediation were conducted using the Karlson, Holm, and Breen (KHB) mediation model. Stata/MP 14.2 was used to conduct all analyses. RESULTS: Majorities of all groups report favorable responses to the provisions stipulated in AAKH regulation. Responses to provisions are significantly associated with race/ethnicity and prior willingness, with racial/ethnic minorities and those not previously willing to be evaluated less likely to report favorable responses to these provisions. Prior willingness differences are partially explained by group differences in ability to benefit and transplant-related knowledge and attitudes, but racial/ethnic differences largely are not. CONCLUSIONS: Regulation stemming from the AAKH initiative is likely to effectively promote LDKT, but may also exacerbate racial/ethnic disparities. Therefore, the regulation may need to be supplemented by efforts to address non-financial obstacles to LDKT in racial/ethnic minority communities in order to ensure equitable increases in LDKT rates and living donor support. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12889-021-12023-w.