Research, Innovation, Donor Protections: Key Priorities for Kidney Health

Congressional support is paramount for increasing investment in kidney health research at NIDDK, more funding for KidneyX to accelerate innovation, and protections for living organ donors.

How can increased funding for kidney research help more than 37,000,000 Americans who are living with kidney diseases? Through research at the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), kidney health and quality of life improvements are advanced on various levels, specifically to address diabetes and other endocrine and metabolic diseases; digestive diseases, nutritional disorders, and obesity; and kidney, urologic, and hematologic diseases.

Prior congressional investment in kidney research at NIDDK is leading to new cures and improvements in care for Americans living with kidney diseases. NIDDK’s Kidney Precision Medicine Project, for example, identifies critical human cells, pathways, and targets for new therapies in acute and chronic kidney diseases. The project aims to ethically obtain and evaluate human kidney biopsies from participants with acute kidney injury or chronic kidney disease, create a kidney tissue atlas, define disease subgroups, and identify critical cells, pathways, and targets for novel therapies.

Advocates of ASN and American Association of Kidney Patients (AAKP) recently met with their congressional delegations to ask for more funding for kidney health research at NIDDK, which also strives to address health disparities by recruiting diverse study participants, increasing the pipeline of next-generation researchers from underrepresented backgrounds, engaging patients in study design, recruitment, and consent, and conducting research to identify the underlying causes of health disparities. NIDDK is also funding and conducting basic, clinical, and translational research focused on slowing the progression of kidney diseases and preventing kidney failure. 

“AAKP is very proud of our long partnership with ASN the tremendous bipartisan and bicameral relationships we have worked together to establish across the Congress,” said AAKP President Richard Knight. ASN and AAKP advocates asked Congress to increase funding for kidney health across the federal government, including an increase of at least $632 million for kidney research at NIDDK to keep pace with medical inflation, study COVID-19, and continue to improve the care for people living with kidney diseases.

“COVID-19 has exacerbated the strain on kidney patients and their allied professionals, and we are asking Congress to act today to support greater research, innovation, and organ donor protections so the nation is better prepared to manage the increased prevalence of kidney disease as well as COVID-19’s impact on kidney health,” added Knight, who is a fifteen-year kidney transplant patient.

Medicare alone spends more than $125 billion annually to manage kidney diseases, including $50 billion to manage kidney failure. This burden may grow because of the COVID-19 pandemic; 30 percent of people hospitalized with COVID-19 develop kidney damage, even in people without a history of kidney diseases. More research is needed to improve the care of people with kidney diseases, yet the U.S. government invests less than one percent of this cost in kidney disease research and has not provided NIDDK with any dedicated funding to study the impact of COVID-19 on people with kidney diseases.

ASN and AAKP advocates also asked Congress to accelerate innovation by increasing investment in KidneyX and to protect insured and uninsured living organ donors (legislation such as the Living Donor Protection Act (H.R. 1255/S. 377) seeks to remove barriers to living organ donation). 

“ASN is proud to partner with AAKP to call on Congress to improve the lives of people with kidney diseases by increasing funding for kidney health research at NIDDK, supporting kidney health innovation through KidneyX, and protecting living organ donors who provide so many with the gift of life,” said Susan E. Quaggin, MD, FASN, ASN President.

Advocates asked Congress to provide $25 million for kidney innovation at the Kidney Innovation Accelerator (KidneyX), a public-private partnership between the US Department of Health and Human Services and ASN. They asked that Congress ensure that regulatory and payment systems enable patient access to innovation and retain the attention of the private sector. Therapeutic options for people with kidney diseases remain limited. Dialysis is the most common therapy for kidney failure, yet more than one-half of Americans starting dialysis today will die within five years. 

Focused on accelerating innovation in the prevention, diagnosis, and treatment of kidney diseases, KidneyX has supported 67 innovators across five prize competitions in 22 states. In 2020, KidneyX launched the COVID-19 Kidney Care Challenge to promote solutions that reduce the risk of SARS-CoV-2 infection to kidney patients, their care partners, and healthcare staff. 

“Kidney health professionals witness the courage of people living with kidney diseases every day, especially during the COVID-19 pandemic, when they experienced unique challenges and were among the highest risk for death,” recognized Quaggin. "People with kidney diseases matter…and they deserve better."

Prize winners developed solutions that increase access to COVID-19 vaccines for kidney patients living in hard-to-reach geographies, and pandemic prevention kits for socially-vulnerable kidney patients. KidneyX is currently running the Artificial Kidney Prize Phase 2, which seeks to promote the integration and advancement of prototype bioartificial kidneys.

Protecting insured and uninsured living organ donors was another key priority for ASN and AAKP advocates. Legislation such as the Living Donor Protection Act (H.R. 1255/S. 377), sponsored by U.S. Reps. Jerry Nadler (D-NY) and Jaime Herrera Beutler (R-WA), and with Sens. Kirsten Gillibrand (D-NY) and Tom Cotton (R-AR), seeks to ensure living donors can access life, disability, and long-term care insurance and to codify a 2018 U.S. Department of Labor decision that living organ donors are protected under the Family and Medical Leave Act (FMLA) and can take time to recover from donation surgery and maintain job security.

ASN and AAKP advocates urged Congress to take action to protect living organ donors to encourage living donation of kidneys. Every day, 12 Americans die on the 100,000-person kidney transplant waitlist. Moreover, one in four living organ donors experience difficulty in securing or paying for life, disability, and long-term care insurance, and these barriers lead to inequity. White Americans are twice as likely to receive a kidney transplant from a living donor than Black Americans.

ASN continues to push for greater access to—and transparency of—active and inactive status for patients referred for kidney transplantation. This is part of a broader ASN initiative to improve kidney transplantation through a variety of efforts including advocating for the Biden Administration to finalize the Organ Procurement Organization metrics final rule, increase transparency and streamlining of the transplant approval process, and, ultimately, an increase rates of kidney transplantation in the United States.