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Kidney Patients Prepare to Brief U.S. Senate and House Leaders

AAKP Ramps Up Presence on Capitol Hill Over Key Patient Concerns


TAMPA, FL: The American Association of Kidney Patients, AAKP, will kick off National Kidney Month actions March 2-3 at the second annual Kidney Patient Summit being held in Washington, D.C. AAKP will partner with the National Kidney Foundation (NKF) and other patient interest organizations to brief elected leaders and their staffs on the need to protect and increase access to quality care for the nation’s kidney patients.

“We are honored to provide members of the U.S. Senate and House the opportunity to hear directly from kidney patients on how actions taken by the President and the Congress impact the quality of their lives, including their ability to work and provide for their families. Patients are the first to experience both the positive and negative impacts of health care decisions originating in Washington, D.C.” stated Paul T. Conway, AAKP President and a transplant recipient. “Hopefully, our elected leaders will listen to patient concerns, reflect on the impact kidney disease has had among their own families and friends, and use these insights as they determine how to spend taxpayer funds.” Conway spent nearly two years on dialysis before receiving a kidney transplant at the VCU/Medical College of Virginia. He is the former Chief of Staff of the United States Department of Labor under Secretary Elaine L. Chao and a former Deputy Secretary of Health for the Commonwealth of Virginia.

Patient advocates will brief elected leaders and key committee staff on the challenges facing kidney disease patients and legislation that will affect their lives. Advocates will ask Congress to:

  • Protect living organ donors by signing the bi-partisan Living Donor Protection Act which prohibits insurance companies from denying or limiting life, disability and long term care insurance and from charging higher premiums to living organ donors.
  • Act to improve early detection, diagnosis, and management of kidney disease.
  • Increase funding for kidney disease research and awareness of its many causes.
  • Improve access to care for people with kidney failure also known as End-Stage Renal Disease (ESRD).

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. The most common cause of kidney disease is diabetes and hypertension. Without dialysis or a kidney transplant, patients suffering from kidney failure will not survive.  Since transplant organs are in short supply, most patients must undergo dialysis treatment, a process that substitutes for healthy kidneys by mechanically filtering body wastes and excess fluids from the bloodstream, 3-4 times per week.

In addition to AAKP and NKF, the 2015 Kidney Patient Summit will include patient representatives from the Polycystic Kidney Disease Foundation (PKDF), the Alport Syndrome Foundation (ASF), the IGA Nephropathy Foundation of America (IGA), andNephcure Kidney International (NFI).

AAKP believes an informed patient is the best advocate.   At the top of AAKP’s agenda is QUALITY of health care – from early diagnosis of CKD to improved dialysis facility quality, better management of co-morbid conditions, and increased opportunities for transplantation. AAKP actively addresses public policy issues with Federal government officials, including Congress and Federal agencies including 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).

Over the next several months, AAKP will join with many other allies from the health care and kidney community to make patient perspectives better known among lawmakers and their staffs. AAKP will be joining with the American Society of Nephrology (ASN), the Renal Physicians Association (RPA), the Alliance for Home Dialysis, the National Renal Administrators Association (NRAA) and several other national organizations.

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 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.