The American Association of Kidney Patients (AAKP) is pleased to announce two members of its National Board of Directors, both of whom are former AAKP National Board presidents, have been selected to serve on the inaugural Patient and Family Partnership Council (PFPC) of the Kidney Health Initiative. The newly appointed members of the KHI’s PFPC are Mr. Sam Pederson (AAKP president 20012-2104) and Ms. Roberta Wager, RN, MSN (AAKP president 2010-2012).
The KHI was established by the American Society of Nephrology (ASN) in 2013 and has a membership of more than 70 top national organizations. KHI works to improve patient safety and promote the development of optimal therapies for diseases that impact kidneys and the quality of life of millions of people.
AAKP President Paul T. Conway stated,“AAKP is executing a national strategy designed to policy perspectives within key centers of influence through our active collaboration with credible and effective national allies. We respect the special recognition KHI has extended to our Board members and we are very confident their combined expertise and real-life experiences will make a substantive impact within the PFPC for both patients and families.”
Mr. Sam Pederson is a two-time kidney transplant recipient from Seattle, WA. He is an executive coaching consultant for TEC International and has served on various Boards such as the American Transplant Association, Southland Luther Home, Lutheran Camping Association, Columbia Lutheran Ministries. He is a former President of Space Applications Corporation and a previous member of the American Institute of Aeronautics and Astronautics (AIAA).
Ms. Roberta Wager is a two-time kidney transplant recipient from San Antonio, TX and serves as an In-Service Coordinator with Fresenius Medical Care. She serves on the Medical Advisory Board of the South Texas Chapter of the National Kidney Foundation and is active with the Alumni Council of the University of Texas School of Nursing.
The KHI, which was established by the American Society of Nephrology in 2013 has a membership of more than 70 top national organizations. KHI works to improve patient safety and promote the development of optimal therapies for diseases that impact kidneys and the quality of life of millions of people.
Other PFPC members include Celeste Castillo Lee, Chair and Liaison to KHI Board of Directors (Vasculitis Foundation), Denise Eilers, BSN, RN (Home Dialyzors United) Richard D. Fissel (NephCure Kidney International) Kevin J. Fowler, Terry F. Litchfield, and Caroline Wilkie (National Kidney Foundation).
The PFPC assists the KHI Board of Directors in providing strategic guidance about how to engage and include patients, their families and care partners in KHI activities, including:
• Advise KHI members regarding patient involvement in their project proposals;
• Outline opportunities for patients to serve once a project has been endorsed;
• Identify patients to serve on project workgroups;
• Collaborate on developing patient centered project(s) to submit for KHI endorsement.
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 109,439 people on the kidney transplant waiting list.
In additional to a broad range of relationships in the United States Congress and among allied kidney organizations such as KHI, AAKP works very closely with Federal agencies and senior leaders across government to inform policy and regulatory decisions related to kidney disease care and prevention as well as 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).
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.
AAKP is a voluntary non-profit organization founded by kidney patients, which for more than 45 years, has been dedicated to improving the quality of life of kidney patients through education, advocacy and the fostering of patient communities. The programs offered by AAKP inform and inspire patients and their families to better understand their condition, adjust more readily to their circumstances, and assume more normal, productive lives in their communities.