Advocates from the American Society of Nephrology (ASN) and the American Association of Kidney Patients (AAKP)  met with Representatives, Senators, and their respective staffs on March 30 to urge Congress to continue its historic support of research funding for the National Institutes of Health and to cosponsor and pass the Living Donor Protection Act (H.R. 1270).

“The prevalence of kidney diseases in the U.S. is at a record high,” said Crystal A. Gadegbeku, MD, chair of the ASN Policy and Advocacy Committee. “We need Congress to provide kidney-specific research funding, similar to the Type I Diabetes Program, which has led to a Food and Drug Administration approved artificial pancreas. The recent Government Accountability Office report about the prevalence of kidney diseases in America and the underfunded state of kidney research should be both a wake-up call and a rallying cry for members of Congress and all Americans.”

“Kidney patients share the same aspirations as every other American including a good job, the ability to help provide for their family and to own a home,” said Paul T. Conway, president of the American Association of Kidney Patients and a thirty-six year kidney patient. “Yet, for the millions of Americans suffering from kidney disease, and for the more than a half a million currently on dialysis, their ability realize their dreams is dependent upon research-driven innovations and greater access to kidney transplants.

As scientific and patient advocacy organizations, ASN and AAKP are united in their efforts to advance patient health outcomes and respectfully request the U.S. Congress to support increased kidney disease research and to pass the Living Donor Protection Act.”

In January, the GAO released a report detailing that 17% of Americans (40 million) have kidney diseases and about 680,000 have kidney failure – most of whom rely on dialysis to live. The GAO data shows that Medicare spends nearly $33 billion on kidney failure, while the investment in federally funded kidney research is the equivalent of just about 1% of that amount.

The United States Renal Data System data places total Medicare spending for all kidney diseases at $103 billion. In order to bring better value to Medicare and improve patient outcomes, ASN and AAKP advocates are urging Congress to support an additional $150 million per year over 10 years to establish a Special Statutory Funding Program for Kidney Research at The National Institute of Diabetes and Digestive and Kidney Diseases, supplementing regularly appropriated funds they currently receive.

Advocates for both groups are also asking Congress to pass the Living Donor Protection Act, H.R. 1270, to remove barriers to living organ donation to address the nation’s organ shortage. Medicare spends about $30,000 per transplant patient versus nearly $90,000 per hemodialysis patient annually on average, according to the advocates.