Financial consequences

Another potential barrier to LKD is concern about the financial consequences of donation. It takes weeks or months to recuperate from a nephrectomy, and this may mean lost wages for employed individuals who would have to take time off from their jobs.

James R. Rodrigue, PhD, of Beth Israel Deaconess Medical Center in Boston, and colleagues surveyed recipients of kidneys from deceased and live donors and patients on a waiting list for a kidney transplant and found that almost half of respondents reported not asking potential living kidney donor about considering donation because of concern about the impact of lost income on the donors or their families.

In addition, 36% reported being told by a family member or friend that they were willing to donate but were concerned about potential lost income. Wait-listed patients and recipients of a deceased donor kidney transplant (DDKT) were more likely than recipients of a live donor kidney transplant (LDKT) not to talk to others about living kidney donation (51% and  61% vs. 31%) and more likely to have others not pursue LKD evaluation. Lower income and African-American patients were significantly more likely to report not having talked to someone about LKD and to have someone not pursue LKD because of financial concerns.

Many patients, especially those on a waiting list and those who received a DDKT after years on a waiting list, may decide not to pursue LDKT due to concerns about the financial impact on the donor, Dr. Rodrigue and his colleagues stated in a poster presented at this year’s World Transplant Congress. In addition, two-thirds of potential living kidney donors who expressed financial concern to the patient did not initiate evaluation.

“These findings highlight that potential lost income following LKD may be a more significant barrier to LDKT than previously thought, especially for low income and Black patients,” they wrote. “Removing this disincentive may attenuate the national decline in LDKT.”

Insurance concerns

Potential donors also might be reluctant to donate a kidney because they are worried about how this would affect their ability to obtain and keep health and life insurance. In a study recently published online ahead of print in the American Journal of Transplantation, a team at Johns Hopkins University in Baltimore led by Dorry Segev, MD, PhD, demonstrated the potential negative impact of LKD on the ability to change or initiate health and life insurance following donation.

They surveyed 1,046 individuals who donated a kidney at their institution from 1970 to 2011. Among 395 donors who changed or initiated health insurance after donation, 27 (7%) reported difficulty. Of these, 15 were denied altogether, 12 were charged a higher premium, and 8 were told they had a pre-existing condition because they were kidney donors.

Among 186 donors who changed or initiated life insurance after donation, 46 (25%) reported difficulty. Of these, 23 were denied altogether, 27 were charged a higher premium, and 17 were told they had a pre-existing condition because they were kidney donors.

“These practices by insurers create unnecessary burden and stress for those choosing to donate and could negatively impact the likelihood of live kidney donation among those considering donation,” the authors concluded.

The subjects in the study had donated a kidney prior to January 1, 2014, when discrimination in the provision of health insurance based on pre-existing conditions became illegal under the Patients Protection and Affordable Care Act (ACA), the authors noted, “so insurance companies can no longer refuse health insurance to live kidney donors or charge them a higher insurance rate. However, numerous attempts have been made to repeal the law. If protections for live kidney donors are repealed in the future, the difficulties we report here will likely resurface.”

Furthermore, Dr. Segev’s team pointed out that ACA does not apply to life insurance, “which was more commonly a source of difficulty for live kidney donors in our study than was health insurance.”

With lower death rates than the general population, Dr. Segev and his colleagues stated, kidney donors represent excellent candidates for health and life insurance. “Failure to provide insurance to donors harms those who have willingly undergone an invasive procedure on behalf of an ESRD patient; it also makes poor financial sense for insurance companies.”

“It is incumbent upon the transplant community to provide accurate and comprehensive information about the health status of live donors in order to inform insurance companies of donors’ excellent insurability,” they concluded. “Additionally, regulation may be required to prevent discrimination against live kidney donors.”