In this 19-year national study of living kidney donation rates, we found, after accounting for the length of time legislation was enacted and the incidence and prevalence of ESRD in each state, that increases in living-related kidney donations (which comprised a majority of all donations) were no greater after the institution of state or federal public policies compared to before policies were instituted. In contrast, rates of living-unrelated donation were associated with state and federal policies, suggesting policies may selectively decrease barriers to living-unrelated kidney donation. These findings inform ongoing efforts at state and federal levels to enhance living donation and may provide insight to avenues for future improvement in living organ donation rates.
A great deal of attention has been devoted to identifying mechanisms through which disincentives to living organ donation can be overcome. Debate regarding which types (if any) and what magnitude of incentive for living donors are most appropriate from legal and ethical standpoints has been a prominent component of this dialog (61
). Many have rejected arguments for payment to donors (e.g. tax credits or regulated organ sales), citing their potential to exploit persons of less socioeconomic means, the possibility of violating the National Organ Transplant Act (which forbids the transfer of organs for valuable consideration in transplantation) and the possibility of minimizing the value of what many consider an altruistic gift (61
). However, proponents have proposed modest rewards that provide reimbursement for expenses of travel, housing and lost wages incurred by donors (which would not necessarily enrich potential donors, and would not leave donors more physically and financially worse-off as before their donation) as potentially acceptable (61
). The current state legislation we studied has been modeled after this latter approach, providing some protection from financial losses associated with donation (by protecting lost wages and providing arguably minimal financial relief through benefits in state income taxes) and by allowing time for donors’ convalescence. Additional policies at the federal level currently undergoing evaluation provide reimbursement for subsistence expenses incurred by donors (including financial support for travel, lodging and meals) (72
). Our study suggests interventions, as currently formulated, are only associated with living-unrelated kidney donation and not associated with sustained improvements in the larger numbers of living-related donations and therefore overall living donation rates.
Although recent studies suggest the U.S. public views paid leave and reimbursed medical expenses for living donors favorably (73
), little is known regarding the magnitude of compensation or reimbursement needed to have an effect on donation behaviors. A regional study demonstrated potential living donors are very sensitive to financial risks associated with donation (43
). We are aware of no studies assessing the potential effects of offering differing magnitudes of compensation for potential living donors on donation rates and we are aware of no studies assessing the potential effect of varying types of legislation on persons of low financial means. Current legislation addresses only employed persons or persons with enough income to benefit from a $10 000 tax credit or deduction, and therefore offers no provisions to persons who may be unemployed or with minimal incomes (who are likely face greater financial hardship when considering living donation). In addition, most legislation mandating paid leave is limited to state employees who represent a very small proportion (1% to 4%) of the total population in each state, therefore severely limiting the potential impact of legislative efforts. While our findings suggest these current policies are associated with an increase in living-unrelated donation rates, further work is needed to identify whether legislation has had any untoward effect on access to living kidney transplantation and willingness to donate among segments of the population such as those with less financial means.
Public initiatives are intended not only to improve the donation experience for those who have already chosen to donate but also to raise awareness among the general public regarding the need for living donation. Although some initiatives are aimed at a narrow audience (i.e. paid leave mandated for mostly state and local government employees), awareness raising campaigns may have an effect on potential living-unrelated donors who have limited knowledge about the need for kidney donation. The presence of legislation may also more significantly relieve potential unrelated donors’ perceptions of barriers to donation when compared to the majority of donors who are emotionally or biologically related to recipients. Barriers to living-related donation vary and include potential transplant recipient attitudes (including concern regarding risks to donors’ health and finances and their perceptions of ESRD) (74
), potential donor knowledge (77
) or attitudes (43
) and family attributes (including poor patient, family and physician communication and family cohesion) (74
). Interventions performed at the level of individual patients, families and health care providers may prove more effective in enhancing rates of living-related donation than interventions implemented at the population level. Our results do not provide guidance as to whether legislative efforts should be abandoned entirely. Although these policies are not associated with improvements in living-related donation rates, other studies that quantify the value of existing public initiatives (or their accessibility to the public) in addressing potential donors’ concerns are needed (81
The observed decline in growth of living-related donation rates after states enacted legislation should be interpreted with caution. Both states enacting legislation and states not enacting legislation experienced a statistically significant slowing of growth in donation rates after 2002, suggesting an unrelated temporal phenomenon affecting living-related donation rates in the continental U.S. Further research is needed to understand reasons for slowed growth in donation rates despite a growing need for donations after 2002 (3
). It is possible the success of recent efforts to enhance rates of deceased donation, including the Organ Donation Breakthrough Collaborative by the U.S. Department of Health and Human Services Health Resources and Services Administration, has drawn attention away from efforts to improve rates of living donation by lessening perceived pressures regarding need for living kidney donation (1
). However, sensitivity analyses accounting for deceased kidney donation rates in each state demonstrated no change from main findings, suggesting this was not the case.
Limitations of this study deserve mention. First, although we categorized legislation into discrete groups, there was variation among states in terms of the content of legislation (e.g. some states legislated less than 10 days paid leave for employees while others provided for up to 30 days paid leave) and the targets of legislation (e.g. some states legislated paid leave for state employees only while others provided paid leave for private sector employees as well). The effect of legislation on willingness to donate could vary according to specific implementation patterns and among specific subpopulations (e.g. persons of different demographic or financial backgrounds). Despite this variation, only two states stipulated less than 30 days paid leave, limiting our ability to perform sensitivity analyses to test the association of variations in legislation with donation rates. Similarly, the small number of states providing either tax deductions or tax benefits limited our ability to test differences in associations of these tax benefits with donation rates. Second, our study does not account for other local factors that might influence increases in donation such as the presence of transplant centers with active recruitment efforts for living donation. Third, many states enacted legislation after 2000, limiting our ability to assess a long-term association of legislation with donation rates. Fourth, our study was not able to identify underlying reasons for tremendous growth of donations in some states (such Minnesota) but not in others. It is possible that growth could be attributed to a variety of factors, including the availability of transplant surgeons, the need for transplantation in states, greater activism on the part of donation proponents or patient advocates, cultural influences or policies instituted on a local level (e.g. individual companies might voluntarily implement donor leave policies). While we did not observe differences in the number of transplant surgeons or the need for transplantation in states with versus without legislation, we were not able to measure other potential factors that could affect donation rates locally. Finally, growth in living-unrelated donation may have been affected by other factors (e.g. improvements in immunosuppression, establishment of stranger donor programs) during the study period. Notwithstanding these limitations, to our knowledge, this study is the first to rigorously assess of the association of both state and national policies with living kidney donation rates in the United States.
In summary, existing state and federal policies were not associated in improvements in donation rates among the majority of living kidney donors who were related to transplant recipients but were associated with improvements in living-unrelated kidney donations. Further work is needed to assess the degree to which current policies overcome barriers for all donors and to assess whether other policy interventions are associated with improvements in all types of donation.