When good intentions are not enough: obtaining follow-up data in living kidney donors.

The Organ Procurement Transplant Network/United Network for Organ Sharing (OPTN/UNOS) has increased the amount of data collected before and after donation and increased the duration of donor follow-up to 2 years, yet there is evidence that reporting is incomplete. We examined the frequency of missing data in the OPTN/UNOS donor follow-up registry and found that reporting rates were low, particularly for donors who may have limited access to health care. We argue that a national donor follow-up registry is essential to ensure transparency in ascertaining long-term health outcomes among all living donors and in providing assessments of quality assurance within transplant programs. We have suggested approaches to strengthen the donor follow-up registry system. These include setting clear and high standards for follow-up reporting, a system of incentives and penalties that would motivate transplant centers to comply with these standards and would encourage donors to follow-up and lifelong follow-up reporting by primary care providers. We argue that the US government must provide funding to support a donor follow-up registry that can allow for meaningful and valid conclusions, in recognition of donors' public service and to maintain trust in the system of living organ donation.

The system of health insurance for living donors is a disincentive for live donation.

The health insurance system for living donors is derived from insurance policies designed to cover accidental death or dismemberment. The system covers only the direct consequences of organ removal, and recoups the costs of related medical services from the transplant recipient's health insurance provider. The system forces transplant programs to differentiate between health services that are, or are not directly attributable to donation and may compromise the pretransplant evaluation, postoperative care and long-term care of living donors. The system is particularly problematic in the United States, where a significant proportion of donors do not have medical insurance. The requirement to assign donor costs to a particular recipient is poorly suited to facilitate advances in living donation such as the use of nondirected donors and living-donor paired exchange programs. We argue that given the current understanding regarding the long-term risks of living donation, the provision of basic medical insurance is a necessity for living donation and that the system of attributing donor costs to the recipient's insurance is inefficient, has the potential to undermine the care of living donors and is a disincentive to the expansion of living donation.