On Thursday, July 7, the ASN Research Advocacy Committee participated in meetings at the U.S. National Institutes of Health (NIH) and Department of Veterans Affairs (VA) during the society’s annual Kidney Research Advocacy Day (Table 1). ASN Research Advocacy Committee Chair Frank C. Brosius, MD, and ASN Public Policy Board Chair John R. Sedor, MD, FASN, also participated in a first-ever ASN meeting with the White House Office of Management and Budget on Friday, July 8.
The Research Advocacy Committee urged the NIH and VA to pool resources and knowledge toward uncovering new discoveries and innovations for preventing and treating kidney diseases. Meeting topics also included continued collaboration and partnerships with the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) to eliminate kidney health disparities and increase interest in kidney research careers.
“Kidney Research Advocacy Day is a rewarding opportunity to encourage more kidney research collaborations and initiatives among federal research stakeholders,” Dr. Brosius remarked. “Cancer, HIV/AIDS, and other diseases have had great success in part because stakeholders worked together to revolutionize care. ASN hopes to do the same thing for kidney diseases. We’ve seen too few advances in care, and patients with kidney diseases deserve more and better treatments than the limited options available today.”
The Research Advocacy Committee began annual visits to NIH in 2012 to raise the profile of kidney diseases, promote more kidney-related research, and encourage more cross-institute collaboration. In addition to NIDDK, the committee met with leaders of the National Heart, Lung, and Blood Institute (NHLBI); National Institute of General Medical Sciences (NIGMS); National Institute of Minority Health and Health Disparities (NIMHD); National Institute of Biomedical Imaging and Bioengineering (NIBIB); and National Institute on Aging (NIA).
At the VA, the Research Advocacy Committee learned that the highest number of grants during the last funding round went to kidney research, including one of the first five Million Veteran Program grants. The VA Office of Research and Development expressed interest in continued collaboration with ASN and the society’s members who are VA clinician-investigators. ASN is a member of the Friends of VA Medical Care and Health Research (FOVA) advocacy coalition. FOVA was founded over 25 years ago to ensure that America’s veterans receive high-quality healthcare.
While meeting with the White House Office of Management and Budget, Dr. Brosius and Dr. Sedor discussed the importance and need for more federal investments in kidney research, as well as the status of the Government Accountability Office’s (GAO) investigation on the adequacy of federal investments in kidney research. Rep. Barbara Comstock (R-VA), Rep. Tom Marino (R-PA), Sen. Ben Cardin (D-MD), and Sen. Bill Nelson (D-FL) requested the GAO study given the significant societal burden of kidney diseases.
An internal ASN study of kidney research revealed that less than 1% of total Medicare expenditures on care for patients with kidney diseases is invested in kidney research. Altogether, Medicare spends $99 billion annually. The Medicare End-Stage Renal Disease Program—the only disease-specific entitlement program—annually costs $35 billion alone, more than the entire NIH budget. Yet federal investment in kidney research pales in comparison, totaling only $650 million.
The GAO is on track to complete and release the results of its study by the end of 2016. “The GAO report is a crucial first step in understanding the current kidney research landscape, and I anticipate it will confirm what ASN has suspected all along—that kidney research is underfunded,” Dr. Sedor said. “I believe the report will pay dividends for research funding down the line. Once complete, ASN looks forward to sharing the results with the entire kidney community.”
In the meantime, ASN is working with other stakeholders in the research community to continue building support for another NIH and VA research funding increase in 2017. In 2016, Congress increased the NIH budget by $2 billion to a total of $32 billion, as well as the VA Research Program’s budget by $41.8 million to a total of $630.7 million.