AAKP Joins National Kidney Foundation and Others On Capitol Hill

March 8, 2017 8:47 pm Published by

FOR IMMEDIATE RELEASE

Sarah McConnell
Marketing & Communications Manager
(800) 749-AAKP (2257)
smcconnell@aakp.org

 

U.S. CONGRESS LISTENS TO OVER 140 KIDNEY PATIENTS

AAKP Joins National Kidney Foundation and Others On Capitol Hill

WASHINGTON, D.C.:  The American Association of Kidney Patients, (AAKP), kicked off National Kidney Month March 6-7 as a partner with the National Kidney Foundation (NKF) at the second annual Kidney Patient Summit in Washington, D.C. The event marked an important and ongoing expansion of AAKP efforts across Capitol Hill and within the Executive Branch over the past several years - in 2016 alone AAKP conducted over 120 Congressional visits of their own.

 

Over 140 kidney patients and caregivers from across the country met with their elected representatives to voice their strong support for efforts to increase living kidney donations, provide immunosuppressive drug coverage for the life a transplanted kidney (coverage is currently limited to thirty-six months) as well as continued kidney disease research and prevention funding.

 

Paul T. Conway, President of the American Association of Kidney Patients stated, “As allies in the larger battle to prevent kidney disease and to spur innovation in devices, diagnostics and medications, four major national kidney organizations had the honor to talk to elected leaders and their key staff and to share patient perspectives on what patience define as quality care. By the close of our meetings on Capitol Hill, AAKP and our allies has assembled an impressive list of elected leaders a staffs whose own lives had been impacted by this disease – and will be incorporating them into our ongoing policy education efforts.” Conway has managed kidney disease for over thirty-six years including dialysis, and has been a kidney transplant patient for over twenty years. Conway is a policy practioner who has served under three presidents and is a former Chief of Staff of the United States Department of Labor for Secretary Elaine L. Chao and the former Chief of Staff of the United States Office of Personnel Management.

 

Richard Knight, Vice President and Chair of Public Policy for the American Association of Kidney Patients stated, “We were so very pleased at the interest and empathy elected leaders and their staffs demonstrated toward each and every patient and their perspectives of how health policy developed by the U.S. Congress impacts their personal lives. We appreciate the bicameral and bipartisan interest in accelerating better prevention and treatment for those who suffer from this devastating disease.” Mr. Knight is a kidney transplant recipient and former dialysis patient. He is a veteran Capitol Hill staffer, small business owner and an adjunct faculty member of Bowie State University’s College of Business.

 

In addition to AAKP and NKF, the 2017 Kidney Patient Summit included patient representatives from the Polycystic Kidney Disease Foundation (PKDF), the Alport Syndrome Foundation (ASF), and Nephcure Kidney International (NFI).  Over the next several months, AAKP will expand its Capitol Hill efforts as it joins other allies from the health care and the kidney community to make kidney patient perspectives better known among Congressional leaders and their staffs. AAKP will be joining with the American Society of Nephrology(ASN), the Renal Physicians Association (RPA), the National Renal Administrators Association (NRAA) and several other national organizations.

 

AAKP board members and patient members conducted visits across Capitol Hill with multiple Congressional offices, some of which included:

Senator Marco Rubio (FL); Senator Jerry Moran (KS); Senator Pat Roberts (KS); Senator James Lankford (OK); Senator Bill Nelson (FL); Congressman Elijah Cummings (MD); Congressman Daniel Lipinski (IL); Congresswoman Jan Schakowsky (IL); Congressman Gus Bilirakis (FL); Congressman Steve Scalise (LA); Congressman Steve Russell (OK); Congressman Kevin Yoder (KS); Congressman Rob Wittman (VA); Congressman David McKinley (WV); and Congressman Gerry Connolly (VA) .

 

Kidney care, including dialysis, costs the American taxpayer over $33 billion per year, an estimated 7% of the Federal budget. An estimated 26 million Americans suffer from chronic kidney disease (CKD), including more than 870,000 individuals who suffer from complete renal failure which includes those on dialysis or have a functioning kidney transplant. Today, there are 98,200 people on the kidney transplant waiting list.

 

AAKP is bipartisan in its relationships and non-partisan in its operations. Within the Executive Branch, AAKP works closely with Federal agencies responsible for research, healthcare and reimbursement policies that impact kidney patients. These agencies include the Centers for Disease Control (CDC), the Center for Medicare and Medicaid Assistance (CMS), the Food and Drug Administration (FDA), the CMS Center for Medicaid and Medicare Innovation (CMMI), the National Institutes of Health (NIH), and the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).  Within the U.S. Congress, AAKP elevates kidney disease issues with individual Senators and Congressional leaders, key Senate and House Committees as well as the Government Accountability Office (GAO) and the Congressional Budget Office (CBO).

 

AAKP will continue its focus on patient health, patient engagement and public policy at its 2017 National Patient Meeting to be held in St. Petersburg, Florida on September 8-10, 2017. This year’s program provides patients and their care partners the opportunity to learn the latest scientific research regarding kidney disease and treatment options; innovations in devices and medication; diet/nutrition; patient safety; public policy issues affecting their care; and opportunities to engage with government agencies to increase the patient voice. For more information on the 2017 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.

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Founded in 1969, AAKP is the largest and oldest independent kidney patient organization in America. Governed by a patient-majority Board of Directors, AAKP conducts national education programs designed to better inform kidney patients, care-givers and policy-makers about the true impacts of kidney disease, prevention efforts and treatment methods. AAKP executes a national advocacy strategy in conjunction with allied kidney organizations designed to insert the patient voice into proposed policies, research efforts and care deliberations before the Executive Branch and the U.S. Congress.

Categorized in: Advocacy, Press Release