Living Donor Protections Included in Act Introduced by Congress

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A new bill introduced by Congress in February 2016 aims to encourage living organ donations and protect the rights of living organ donors. The bill would also set the stage for education efforts on living organ donation to be instituted by the US Department of Health and Human Services.

The proposed legislation would prohibit providers of life, disability, and long-term care insurance from denying or limiting coverage to living organ donors. It would also prevent insurers from charging higher premiums. In addition, the bill clarifies that living organ donors may use time allotted to them through the Family and Medical Leave Act to recover from donation surgery and thus maintain their job security (Table 1).

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“By creating job security for living organ donors and ensuring them time to recover from their donation surgeries, as well as ensuring education concerning these new protections, this important legislation will likely help countless Americans receive the gift of life,” said ASN President Raymond C. Harris, MD, FASN.

The number of people affected by kidney disease is staggering. According to the National Institute of Diabetes, Digestive, and Kidney Diseases, 1 in 10 American adults—more than 20 million people—are affected by some level of chronic kidney disease (CKD), and the numbers are increasing. A patient is added to the kidney waitlist every 14 minutes, and despite the fact that this list is always growing, living donation rates are decreasing. In all, 12 Americans die each day waiting for a transplant.

The Living Donor Protection Act of 2016 was introduced with bipartisan support by both houses of Congress, with Reps. Jerrold Nadler (D-NY) and Michael Burgess (R-TX) and Sens. Mark Kirk (R-IL), and Kirsten Gillibrand (D-NY) proposing the legislation.

The American Society of Nephrology was one of 16 kidney health organizations that united to advance the legislation on Kidney Community Advocacy Day in 2015. ASN will continue to work toward its passage into law.

“Introduction of this bill is very timely since living kidney donation has been in a downward trend for a decade—6647 donors in 2004 compared with 5075 donors in 2015 (Figure 1). Quite paradoxically there has been a significant rise in ‘paired-exchange donations’ since 2008, accounting for >1700 transplants so far in the US, and without this novel undertaking it is likely that the total number of living donor transplants would have been much worse,” said KN Editorial Board member Uday S. Nori, MD, a nephrologist with Ohio State University Wexner Medical Center in Columbus.

Figure 1. Transplantation rates, 1988–2015

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Courtesy: United Network for Organ Sharing, https://optn.transplant.hrsa.gov/

“This observation underscores that there are serious systemic problems that need to be addressed urgently,” Nori said. “Although the specific causes for this trend remain unclear, it is widely believed that loss of wages during the donation time along with the fear of penalization by insurance providers in the long-term are significant deterrents for living donor candidates. Successful passage of this new legislation would offer important incentives to heighten the interest in living donation.”

Douglas Keith, MD, of the University of Virginia Medical Center, presented findings at Kidney Week 2015 that showed a much lower living kidney donation rate for African Americans compared with that for Caucasians, Hispanics, and Asians. His study looked at the impact of organ transplant candidates’ socioeconomic environment on living kidney or kidney-pancreas donation rates.

Kidney News asked Keith whether provisions of the Living Donor Protection Act might help close the gap in living organ donation rates among those from different socioeconomic environments.

“I think it may have a modest effect on donation in general but I doubt it will have a large effect on African Americans. The gap in donation between Caucasians and African Americans is driven in my opinion by two major issues. One is the African American donor population has high rates of obesity, diabetes mellitus, and hypertension, making them much higher risk for donation and more likely to be found unsuitable for donation and declined as donors. Second, socioeconomic status is much lower on average in the African American population of recipients and donors in the US. I suspect few if any of the donors have life or disability insurance so that is not likely a factor in their decision,” Keith said.

“Family leave for donation could potentially help this group since loss of employment due to donation in low socioeconomic populations is an issue,” he said. “Many people in low wage jobs cannot be off work for the 6 to 12 weeks required to recover from donation and keep their job—they have no benefits that allow for this. The other issue is the loss of income while recovering from donation. Reimbursing donors for lost wages while recovering from donation may have a larger effect on low socioeconomic groups. Unfortunately, this legislation only prevents job loss but does not compensate employed donors for lost wages, a major factor that may influence donation.”