U.S. Senate and House Members Listen to Kidney Patients

AAKP Joins National Kidney Foundation on Capitol Hill

TAMPA, FL:The American Association of Kidney Patients, AAKP, kicked off National Kidney Month March 2-3 as a partner with the National Kidney Foundation (NKF) at the second annual Kidney Patient Summit in Washington, D.C.

Over eighty 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.

Richard Knight, Vice President and Chair of Public Policy for the American Association of Kidney Patients stated, “We sincerely appreciated the amount of time Congressional leaders and their staffs spent listening carefully to patient concerns. Each person with whom we spoke indicated they had learned more about the practical impact kidney disease has on an individual’s ability to remain healthy, fully employed and capable of caring for their families and pursuing their dreams.” Knight continued saying, “We were very encouraged with the level of bipartisan support for more legislative efforts to encourage living donation, provide immunosuppressive drug coverage for kidney transplant patients and to expand research funding.” Mr. Knight 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 2015 Kidney Patient Summit included 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).  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 Ben Cardin (MD); Senator Barbara Mikulski (MD); Senator Mark Warner (VA); Senator Tim Kaine (VA); Senator Bill Nelson (FL); Congresswoman Donna Edwards (MD); Congressman John Delaney (MD); Congressman Chris Van Hollen (MD); Congressman John Sarbanes (MD); Congressman Steny Hoyer (MD); Congressman Scott Rigell (VA); Congressman Robert Scott (VA); Congressman Bob Goodlatte (VA); Congressman Patrick Murphy (FL); Congresswoman Lois Frankel (FL); Congressman David Jolly (FL) and Congressman Daniel Webster (FL).

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, 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.