Kidney Community Unites to Raise Awareness on Capitol Hill

On September 10, 2015, more than 100 kidney patients and health professional advocates gathered in Washington, DC, for Kidney Community Advocacy Day (KCAD). Since 2010, ASN has organized an annual congressional advocacy day to raise awareness about kidney disease. This year, representatives from 16 organizations met with more than 120 congressional offices to promote kidney research funding and increase awareness of, and support legislation to encourage, living kidney donation (Table 1).


Introduced in 1972, the Medicare End-Stage Renal Disease (ESRD) program remains the only Medicare program that, by law, requires coverage for patients regardless of age or disability. Despite advances in access, equipment, and modality choice, there has been little transformative innovation in the quality and cost-effectiveness of care for Americans with kidney disease. Currently, the ESRD program covers less than 1 percent of Medicare patients yet accounts for more than 7 percent of Medicare costs—$35 billion annually, more than the entire annual National Institutes of Health (NIH) budget.

Increasing kidney research funding

Overall, kidney diseases cost Medicare $80 billion annually and affect more than 20 million Americans. However, federal investments in kidney research amount to less than 1 percent of Medicare expenditures for kidney care. With the clock running out for Congress to pass a federal budget for FY 2016, ASN along with 15 KCAD partner organizations urged Congress to strike a budget deal that would address the lack of adequate funding for NIH kidney research.

Despite the current fiscal climate, bipartisan support for increasing the NIH budget has swelled this year. Proposed 2016 budgets in both houses provide increases for NIH funding, including between $22 and $76 million for the National Institute of Diabetes and Digestive and Kidney Diseases. Unfortunately, because the budget caps limit the total dollar amount Congress can spend on discretionary programs, NIH increases would come at the expense of other public health and research programs.

However, the only way to attract the best and brightest minds for kidney research is to give NIH steady and sustained increases year after year. ASN and its partners will continue to advocate for adequate funding to ensure breakthroughs for kidney patients are as common as those for patients with cancer, heart disease, and HIV/AIDs.

Living Donor Act—promoting living organ donation

Not only does transplantation improve patient quality of life, it reduces Medicare expenditures. Increasing living donation by just 10 percent and transplanting patients before they even enter the Medicare ESRD program is estimated to save Medicare between $559,498,000 and $1,190,078,000 over 10 years.

“Kidney transplants are the best treatment option for most patients with kidney failure, yet there aren’t enough donated kidneys for everyone who needs them,” said ASN Secretary-Treasurer and Public Policy Board Chair John R. Sedor, MD, FASN. “More than 100,000 people are on the waiting list for a kidney transplant. Congress can help them by enacting commonsense legislation that promotes organ donations by ensuring insurance coverage and job security for donors.”

The Living Donor Act would increase the number of kidney transplants by eliminating obvious and unnecessary barriers to donation by:

  • Prohibiting insurance companies from denying or limiting coverage or charging higher premiums for living organ donors for life, disability, and long-term care plans: Eleven percent of living organ donors experience difficulty securing or paying for insurance after their procedures because of discriminatory practices.
  • Clarifying that living organ donors can use “time off” protected by the Family and Medical Leave Act to recover from donation surgery and maintain job security: Post-donation hospitalizations average 3 to 7 days and most donors don’t return to work earlier than 4 weeks after the operation.
  • Directing the Secretary of Health and Human Services to create educational materials reflecting important changes outlined above. Raising awareness is imperative since the number of kidney transplants performed in the US is equal to less than 1 percent of the number of patients on dialysis annually.

Banning discriminatory behavior, eliminating unnecessary hurdles, and increasing education about living donation are critical for those considering donating a kidney to a friend, loved one, or deserving American. ASN and its KCAD partners underscored this legislation’s importance by reminding members of Congress that 12 Americans die every day waiting for a kidney transplant.

Research funding and living organ donation are crucial for eradicating kidney disease. ASN will continue to work with others in the community to fight for the best legislation and increased research dollars. To learn more about ASN advocacy and public policy and to take action, please visit