The American Society of Pediatric Nephrology (ASPN) applauds Chair Bill Cassidy (R-LA), Ranking Member Bernie Sanders (I-VT) and the Senate Health, Education, Labor and Pensions (HELP) Committee for advancing S. 1552, the Living Donor Protection Act (LDPA) as part of the committee mark-up on Thursday, February 26.

This bipartisan legislation addresses longstanding, critical barriers facing living organ donors, including prohibiting discrimination against living donors obtaining life, disability, and long-term care insurance. It also clarifies that donors are eligible for unpaid time off from work under the Family Medical Leave Act to complete their organ donation and recovery.

Children with chronic kidney disease face profound health challenges during a vulnerable time of growth and development. While chronic dialysis can be life-saving, it is fraught with technical challenges and is associated with significant physical, emotional, and developmental burdens. For many children, dialysis serves as a bridge to kidney transplantation, which offers children the opportunity to grow, develop normally, and thrive into adulthood.

Children frequently receive kidneys from living donors, most often their parents and other family members, and even family friends or community members. These donors willingly undergo surgery to improve and save the lives of children in need. The Living Donor Protection Act ensures these individuals are not penalized for their generosity and removes disincentives that can otherwise prevent willing donors from moving forward.

Too often, living donors face higher insurance premiums or uncertainty about their ability to take time off from work to donate a kidney. These barriers may even prevent an individual from moving forward with the gift of donation when they are otherwise willing to do so, requiring children to remain on dialysis for longer than necessary. This legislation addresses these challenges by ensuring that insurance companies cannot charge higher premiums or limit coverage for living organ donors, for either life, disability, or long-term care insurance plans. Additionally, this legislation affirms that the Family and Medical Leave Act applies to living donors. It also directs the Secretary of Health and Human Services to update federal educational materials so that donors clearly understand their rights and protections.

Pediatric kidney patients will benefit greatly because this legislation will increase access to living donation and therefore save lives.

ASPN appreciates the HELP Committee advancing this important legislation in today’s mark-up and urges the full Senate to quickly consider this bipartisan legislation.