New York, March 7, 2017—Today, nearly 150 advocates from six kidney organizations around the country will converge on Capitol Hill to meet personally with lawmakers and put a human face on kidney disease during the 4th Annual Kidney Patient Summit organized and led by the National Kidney Foundation (NKF). This largest event to date brings together, in a unified voice, NKF’s Kidney Advocacy Committee members and advocates from Alport Syndrome Foundation, Polycystic Kidney Disease Foundation, NephCure Kidney International, Home Dialyzors United and American Association of Kidney Patients.
Among the attendees, 70 advocates selected by NKF to represent nearly all 50 states – learn who they are– will share their stories and urge Members of Congress to support a pilot program which seeks to improve early detection, care and outcomes for people with chronic kidney disease (CKD); support H.R. 1270, The Living Donor Protection Act 2017, which was just introduced by Representatives Jerrold Nadler (D-NY) and Jaime Herrera Beutler (R-WA) and would prohibit discrimination in life, disability or long-term care insurance for living organ donors and add living donation to the Family Medical Leave Act; and support funding for CKD programs run by the Centers for Disease Control and Prevention, National Institute of Diabetes and Digestive and Kidney Diseases, and Health Resources and Services Administration.
At the Summit, individuals who have kidney disease, dialysis patients, living donors, family members and caregivers will be united by the affirmation and hashtag “My Kidneys, My Life” (#MyKidneysMyLife) to underscore the direct relationship between having at least one healthy kidney and living at all.
“Coming together for the Kidney Patient Summit is personal for me and the many people traveling from throughout the country who seek to be heard and affect real change for those suffering from kidney disease,” said National Kidney Foundation CEO Kevin Longino, who received a kidney transplant 12 years ago. “’My Kidneys, My Life’ is not just a slogan. It’s a mantra based on facts and a plea for more public awareness,” he added.
More than 26 million Americans are affected by kidney disease but 90 percent don’t even know they have it. Once kidneys fail, dialysis or a transplant is needed just to stay alive.
In addition to advocates’ visits with lawmakers today, March 7, a special Summit press conference on Living Organ Donation will be held today from 1 -2 p.m. EST, on Capitol Hill in 902 Hart Senate Office Building. Living organ donors and kidney recipients will share their stories, demonstrate the urgent need to increase living donation, and provide hope to more than 100,000 Americans waiting for a kidney transplant right now.
Press conference speakers will include: Kevin Longino, CEO, NKF; Representative Jerrold Nadler (D-NY); Representative Jaime Herrera Beutler (R-WA); Representative Brett Guthrie, (R-KY); Kent Bressler, recipient, Kerrville, TX; Kelly Cline, mother of recipient Hannah Shelton, Glen Allen, VA; Alex Fox, donor, Star, ID; Ewo Harrell, recipient, Providence, RI; Christopher Melz, donor, Huntington Station, NY; Luis and Noelia Rodriguez, recipient and donor, Sioux Falls, SD; and Matthew Scroggy, recipient, Columbus, OH. See snapshots of their stories. Representative Herrera Beutler will also be accompanied by her husband Dan, a living donor, and their daughter Abigail, a kidney recipient.
The Summit kicked off March 6, at the Holiday Inn Washington Capitol with a morning meeting of the Kidney Advocacy Committee, comprised of the advocates along with their family members and care partners, to use their collective experiences to champion NKF’s priorities. Following was the annual Advocacy Awards Presentation luncheon, and the Summit training to prepare advocates for their meetings on Capitol Hill today.
Whether traveling from far away or locally; or by air, rails, bus or car, the Summit has become a must-attend event – especially for patients despite constant health challenges, medical appointments, and reliance on dialysis. Event organizers work personally with patients well in advance to help accommodate any special needs they will have while staying in Washington, DC. This includes setting up on-site or local dialysis treatments, shipping dialysis supplies to the hotel, providing refrigerators in rooms for medications, allowing wheelchair or scooter access, and addressing dietary requests or restrictions.
Kidney Disease Facts
1 in 3 American adults is at risk for kidney disease. 26 million American adults have kidney disease—and most aren’t aware of it. Risk factors for kidney disease include diabetes, high blood pressure, family history, and age 60+. People of African American; Hispanic; Native American; Asian; or Pacific Islander descent are at increased risk for developing the disease. African Americans are 3 ½ times more likely, and Hispanics 1 ½ times more likely, to experience kidney failure.
The National Kidney Foundation (NKF) is the largest, most comprehensive and longstanding organization dedicated to the awareness, prevention and treatment of kidney disease. For more information about the NKF visit www.kidney.org.