Congressional Visits Focus on Kidney Research and Treatment

Congressional Visits Focus on Kidney Research and Treatment

Kidney Specialists and Patients Team Up for Congressional Action

The American Association of Kidney Patients (AAKP) joined the American Society of Nephrology (ASN) in Capitol Hill for the 3rd Annual Kidney Health Advocacy Day. The physicians and medical researchers of ASN were joined by AAKP patient volunteers from across the country met with multiple elected leaders and over 70 key staff members of the House of Representatives and the U.S. Senate to show support for legislative and policy solutions of critical importance to kidney patients and medical researchers.

ASN President Jonathan Himmelfarb, MD, FASN stated, “ASN values the opportunity to again partner with AAKP to advocate for issues of mutual important to our organizations and to the millions of Americans with kidney disease.  The society looks forward to continuing the tradition of ASN-AAKP collaborative advocacy in the 114th Congress and beyond.”

Paul T. Conway, President of the American Association of Kidney Patients said, “When the world’s largest professional kidney organization partners with America’s oldest independent kidney patient advocacy organization, Congress is very interested in the recommendations we put forward together. ASN and AAKP appreciated the access Congressional leaders and their staffs allowed us as we promoted pro-patient policies, including issues aimed at addressing gaps in chronic kidney disease research funding and barriers to kidney transplantation.”

AAKP volunteers and ASN members conducted visits across Capitol Hill with multiple Congressional offices, some of which included: Senator Richard Burr (R-NC), Senator James Lankford (R-OK), Senator Tim Kaine (D-VA), Senator Debbie Stabenow (D-MI), Senator Joe Donnelly (D-IN), Senator Richard Blumenthal (D-CT) , Senator Mark Warner (D-VA), Senator Chuck Schumer (D-NY), Representative Robert Hurt (R-VA), Representative Joe Kennedy (D-MA), Representative Steve Russell (R-OK), Representative Bobby Rush (D-IL), Representative Donna Edwards (D-MD) Representative Culberson (R-TX), Representative Michelle Lujan Grisham (D-NM) and Representative Gerald Connelly (D-VA).

Specifically, AAKP patient volunteers and ASN members discussed key issues with Congressional staffers, some of which appear in current legislation aimed at Chronic Kidney Disease entitled The CKD Improvement in Research and Innovation Act of 2015 (HR1130/S598)

  • A legislative directive to the Secretary of Health and Human Services to produce a comprehensive study to the Congress of any disincentives in the Medicare payment systems that create barriers that prevent people from receiving kidney transplants and post-transplant care for beneficiaries with end stage renal disease..
  • A comprehensive report from the Government Accountability Office (GAO) on the adequacy of Federal investments in chronic kidney disease research relative to chronic kidney disease care. A legislative directive to the Secretary of       Health and Human Services (HHS) to submit a comprehensive report to Congress the social, behavioral and biological factors leading to kidney disease and efforts to slow the progression of the kidney disease in minority populations that are disproportionately affected. The proposed report would also examine the treatment patterns associated with providing care to minority populations that progress more quickly to kidney failure.

Other issues ASN staff and AAKP volunteers discussed included:

  • Interest in integrating patient experience data into the regulatory approval process and using patient preferences to enhance risk-benefit analysis.
  • The expansion of telehealth in the Medicare program and waiving the limitations regarding what type of location qualifies as an “originating site.”
  • Policy changes to help the National Institute of Health (NIH) keep more of its own budget and reserve that funding to support young scientists’ promising grant proposals. This reform would encourage the brightest young scientific minds to remain in the field of medical research.

In addition to Congressional leaders, AAKP works closely with Federal agencies and senior officials responsible for kidney disease health policy and regulatory decisions, including dialysis and kidney transplantation. These agencies include the Centers for Medicare and Medicaid Services (CMS), the Health Resources and Services Administration (HRSA), the Center for Medicare & Medicaid Innovation (CMMI), the Government Accountability Office (GAO), the Food and Drug Administration (FDA), the National Institutes of Health (NIH), as well as the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).

Kidney care, including dialysis, costs the American taxpayer over $35 billion per year, an estimated 7% of the Federal budget. An estimated 26 million Americans suffer from chronic kidney disease (CKD), including more than 600,000 individuals who suffer from complete renal failure which includes those on dialysis or have a functioning kidney transplant. Today, there are 109,000 people on the kidney transplant waiting list.

AAKP will continue its focus on patient health, patient engagement and public policy at its 2015 National Patient Meeting to be held in Nashville, Tennessee September 25-27, 2015. The National Patient Meeting will feature health care and policy experts discussing topics including expansion of living kidney donation, new treatment methods, advances in medical technology and pharmaceuticals, efforts to keep kidney patients fully employed as well as training on social media activism. For more information on the 2015 AAKP National Patient Meeting, as well as sponsorship and vendor opportunities, please contact Diana Clynes, AAKP’s Director of Programs & Services at dclynes@aakp.org or call 813-400-2391.