Calling on Congress to enact legislation to simplify the process of supporting living donors and bolstering funding for the transplant system and kidney health innovation, members of the ASN Policy and Advocacy Committee and the ASN Transplant Policy Committee convened in Washington, DC, to meet with lawmakers last week. 

“In addition to providing education about kidney health and transplantation, we focused on three bipartisan, concrete asks for Congress that are prime for action, even in the current climate,” said ASN Policy and Advocacy Committee Chair and ASN Health Policy Scholar-in-Residence Suzanne Watnick, MD, FASN. “It’s clear that improving kidney health and access to transplant remain bipartisan priorities and members of Congress were receptive to the policy solutions we put before them,” she observed.  

ASN committee members highlighted the longstanding legacy of across-the-aisle collaboration on kidney issues, dating back to the Obama administration and including the Executive Order on Advancing American Kidney Health during the first Trump administration, which ASN was instrumental in shaping. 

Join ASN in calling on Congress using ASN’s legislative action center here: www.asn-online.org/policy/lac.aspx 

First, advocates highlighted that transplant provides optimal outcomes at lower expense for most people with kidney failure, with kidney transplants from living donors offering the highest rates of survival, but few Americans step forward to donate. ASN believes that no American should face out-of-pocket costs for giving the gift of life as a living kidney donor—a major reason the society is championing the Honor Our Living Donors Act, which advances that goal by simplifying the process by which living donors can offset the considerable costs associated with donating a kidney.

“While a transplant recipient’s insurance covers the cost of donation surgery, donors face thousands of dollars of direct out-of-pocket costs in order to donate an organ for expenses such as dependent care and travel for donor evaluation,” stated ASN Transplant Policy Committee Chair Roslyn B. Mannon, MD, FASN. “The HOLD Act would streamline the provision of support to living donors by ensuring only the organ donor’s income is tested, allowing federal support for living donors to flow more directly to the people who need it most.” 

Second, ASN touted $25 million in funding for KidneyX in the upcoming fiscal year (FY2026). To catalyze innovation to develop products that bring better value to patients and the Medicare program, ASN partnered with the US Department of Health and Human Services to establish KidneyX, a public-private partnership that uses prize competitions to highlight areas of unmet patient need and call for better ways of meeting those needs. ASN committed the first $25 million to fund the program, which has been matched by Congress, and advocates asked for continued support in FY2026.

Finally, ASN urged Congress to uphold the bipartisan Congressional commitment to improving our nation’s organ procurement and transplantation system by including $67 million for HRSA’s Organ Transplant program in the upcoming fiscal year. 

This investment would advance implementation of the bipartisan 2023 Securing the U.S. OPTN Act, the first major Congressionally-directed reforms to the transplant system in decades, aiming to increase efficiency, transparency, accountability, and competition in the transplant network. Modernization of dated IT and data management systems is the most important aspect these funds will support, and are foundational investments to improving the allocation system and making the system more navigable for patients and kidney health professionals. 

ASN also called for clarification that the U.S. Department of Health and Human Services has the authority to continue to collect and distribute OPTN patient waitlist registration fees to support the ongoing operation of the transplant system in appropriations bill text. In a major win for ASN and the transplant system as a whole, Congress issued this clarification in statute in the Continuing Resolution it passed just days before the hill day, reflecting months of ASN advocacy. 

Stay tuned to Kidney News Online and Kidney News for updates on how these priorities fare in the coming months on the hill, and take action yourself at: www.asn-online.org/policy/lac.aspx