On September 19, 2014, ASN Secretary-Treasurer and Research Advocacy Committee Chair John R. Sedor, MD, FASN, joined other members of the committee and several of the society’s advisory groups to visit the National Institutes of Health (NIH) and Patient-Centered Outcomes Research Institute (PCORI) for “Kidney Research Advocacy Day.”
ASN began annual visits to NIH in 2012 to raise the profile of kidney disease, promote more kidney-related research, and encourage more cross-institute collaboration. This year, Kidney Research Advocacy Day participants met with leaders of the National Heart Lung and Blood Institute (NHLBI), National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), National Institute of Biomedical Imaging and Bioengineering (NIBIB), National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), and National Institute on Aging (NIA). The NIAMS and PCORI meetings were the first one-on-one meetings ASN has had with their leaders.
An internal ASN study of kidney research revealed that less than 1 percent of what the federal government spends on the cost of care for patients with kidney disease is invested in kidney research (approximately $80 billion in Medicare expenditures vs. $650 million for kidney research). The cost of just the Medicare End Stage Renal Disease (ESRD) program is nearly $35 billion, which is more than the entire budget for NIH (less than $30 billion in 2014).
Moreover, in 2013 NIH spent less per patient on kidney research vs. heart disease, cancer, and HIV/AIDS ($30 on kidney research per patient compared to $61, $534, and $2,898, respectively).
U.S. Congressional Kidney Caucus Co-Chair Rep. Tom Marino (R-PA) recently requested a review of federal investments in kidney research from the Government Accountability Office (GAO), a bipartisan agency that is highly regarded by Congress. Obtaining a congressional request for a GAO report on this topic is the cornerstone of ASN’s aggressive new Research Advocacy Strategic Plan to bolster support for more federal kidney research funding.
“I believe the GAO report is a crucial first step in understanding the current kidney research landscape, and anticipate it will confirm that kidney research is underfunded,” Dr. Sedor said.
“I believe the report will pay dividends for research funding down the line,” ASN President Jonathan Himmelfarb, MD, FASN added. “Once complete, ASN looks forward to sharing the results with the entire kidney community.”
PCORI and each of the NIH institutes were receptive to ASN’s concerns and expressed interest in working with the society to advance kidney-related research. Below are some takeaways from the Kidney Research Advocacy Day meetings.