The American Society of Nephrology (ASN) and the American Association of Kidney Patients (AAKP) partnered together for the 10th Annual Kidney Health Advocacy Day on March 23. Advocates from both organizations met virtually with representatives, senators, and their respective staffs to urge Congress to support key legislative priorities including the following:
supporting kidney health research at the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK),
funding kidney health innovation for Kidney Innovation Accelerator (KidneyX), and
protecting living donors to increase organs available for transplant.
Kidney research leads to the discovery of new methods to detect kidney diseases, and an early diagnosis can allow those at risk to be educated on how to slow disease progression and help prevent costly kidney failure requiring dialysis or transplant. Kidney advocates called on Congress to champion a funding increase of no less than $285 million for NIDDK in fiscal year (FY) 2023, which would enable NIDDK to fulfill its mission to conduct and support medical research and research training, to disseminate science-based information on kidneys, and to support the institute's multi-pronged efforts toward the goal of health equity.
Advocates also requested that Congress increase its support for innovation in the prevention, diagnosis, and treatment of kidney diseases by providing $25 million for KidneyX in FY 2023. KidneyX has, so far, received $15 million in federal funding, having most recently received $5 million in FY 2022. Increasing funding by matching ASN's initial $25 million commitment to KidneyX will allow the program to increase the support provided to innovators competing in the current Artificial Kidney Prize competition, as well as invest in other areas of kidney health in need of innovation, such as improving the prevention and diagnosis of kidney diseases.
Lastly, advocates urged Congress to establish protections for living donors, principles laid out in legislation, such as the Living Donor Protection Act (LDPA). A longstanding advocacy priority of ASN and the broader kidney health community, the LDPA guarantees that living donors have access to life, disability, and long-term care insurance with full coverage, without higher premiums, and regardless of insurance status at the time of donation and codifies that the Family and Medical Leave Act protects the employment of living donors after taking time off to donate an organ.
Currently, as many as one in four living donors reports significant difficulty in obtaining life, disability, and long-term care insurance, and fear of a loss of employment after donating an organ is commonly expressed by living donors. The removal of these barriers to living donation is a critical first step to increasing the number of organs available for transplantation. Long-time kidney champions and co-sponsors of the legislation, Sen. Gillibrand, Sen. Cotton, Rep. Nadler, and Rep. Herrera Beutler, are finalizing the text of the legislation, which kidney community stakeholders stand ready to enact into law.
“Vocal constituents are essential in creating meaningful, person-centered policy,” said Zachary Kribs, ASN Senior Government Affairs Specialist. “The ASN and AAKP members volunteering to meet with their Congressional delegation help each office gain a better understanding of the current state of kidney care, research, innovation, and are the most important way members of Congress are motivated to create a policy ecosystem that fosters kidney health.”
ASN will build on the momentum of Kidney Health Advocacy Day by continuing to collaborate with the kidney health and transplant community to advance key 2022 legislative priorities. Updates on progress made throughout the year will be provided in subsequent issues of Kidney News and in real time via @ASNAdvocacy on Twitter.
