ASN, AAKP Join Forces to Advance Living Donor Protection Act

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Kidney transplantation is the optimal renal replacement therapy for the majority of people with kidney failure—yet the nearly 110,000 Americans on the kidney wait list face significant barriers to receiving a transplant. The Living Donor Protection Act aims to eliminate some of these barriers and increase transplantation by strengthening and protecting the rights of living organ donors.

A top priority for the ASN Public Policy Board, the Living Donor Protection Act was introduced in the US Senate as S. 2584 by Senators Mark Kirk (R-IL) and Kirsten Gillibrand (D-NY), and in the US House of Representatives as H.R. 4616 by Representatives Jerrold Nadler (D-NY) and Michael Burgess, MD (R-TX). Building Congressional support and co-sponsorship for this important legislation will be the focus of ASN’s annual Kidney Health Advocacy Day on Thursday, April 21, 2016.

In partnership with the American Association of Kidney Patients (AAKP), ASN Kidney Health Advocacy Day will bring nearly 50 patient and health professionals from around the country to Washington, DC, to meet with their members of Congress and ask for their support for the Living Donor Protection Act. The introduction of this bill and the April advocacy effort build on Kidney Community Advocacy Day 2015, when ASN convened 16 kidney patient and health professional organizations in Washington, DC, to urge members of Congress to introduce the Living Donor Protection Act. ASN and AAKP will now work collaboratively with other stakeholders in the kidney and transplant community to advance and ultimately enact the bill.

The Living Donor Protection Act would eliminate barriers and safeguard the rights of living donors in three ways:

  • Prohibiting discrimination against living donors No laws currently exist that prohibit life, disability, or long term care insurance companies from denying or limiting coverage to people who have donated an organ. A 2007 study demonstrated that more than 10% of living donors encountered challenges in obtaining or paying for insurance post-donation owing to these discriminatory policies.

  • Providing job security to living donors during recovery Four to six weeks are typically required for recovery from living organ donation, so job security can be a serious concern for potential living donors. The Living Donor Protection Act would clarify that living donors can utilize protections under the Family and Medical Leave Act to ensure that their employer cannot penalize them for time spent away from work recovering from the donation surgery. Although this provision would not reimburse donors for lost wages, it would provide job security and reassurance that employment will be waiting upon recovery.

  • Updates educational materials The US Department of Health and Human Services (HHS) plays an integral role in educating kidney patients and their families about all types of donation and the treatment options available. If the Living Donor Protection Act is enacted, HHS would be called upon to update its materials regarding living donation to reflect these new protections and encourage more Americans to consider becoming living donors.

The Living Donor Protection Act would also help save Medicare money. ASN Public Policy Board member Kevin F. Erickson, MD, conducted an analysis that concluded that by increasing living donation by just 10%, the Living Donor Protection Act could save Medicare $560 million to $1.2 billion over 10 years.

“Organ donation saves Medicare millions of dollars every year,” said Rep. Nadler. “It cuts health care costs as much as two-thirds by reducing the need for dialysis and other expensive medical interventions to treat chronic illnesses. Yet, after taking this heroic step to save a life, living organ donors may unfortunately face discrimination when they try to take medical leave or buy insurance. Our bill would address that injustice.”

“This bill will cut costs and make it easier for healthy people to donate living organs without fear of losing their jobs or their paychecks,” commented Sen. Kirk.

Kidney News readers can learn more and join ASN in advocating for this important legislation by visiting ASN’s Legislative Action Center or visiting the ASN Advocacy and Public Policy website.