The American Association of Kidney Patients joined the American Society of Nephrologyin 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 and met with multiple elected leaders and more than 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.
AAKP volunteers and ASN members conducted visits across Capitol Hill with multiple Congressional offices, some of which included: Senator Richard Burr (R-N.C.), Senator James Lankford (R-Okla.), Senator Tim Kaine (D-Va.), Senator Debbie Stabenow (D-Mich.), Senator Joe Donnelly (D-Ind.), Senator Richard Blumenthal (D-Conn.), Senator Mark Warner (D-Va.), Senator Chuck Schumer (D-N.Y.), Representative Robert Hurt (R-Va.), Representative Joe Kennedy (D-Mass.), Representative Steve Russell (R-Okla.), Representative Bobby Rush (D-Ill.), Representative Donna Edwards (D-Md.) Representative Culberson (R-Texas), Representative Michelle Lujan Grisham (D-N.M.) 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 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.