Nearly 150 advocates from six kidney organizations around the country converged on Capitol Hill to meet personally with lawmakers and put a human face on kidney disease.
The 4th annual Kidney Patient Summit, organized and led by the National Kidney Foundation (NKF), was held in the District on March 6-7, urging members of Congress to support a pilot program which seeks to improve early detection and care for people with chronic kidney disease (CKD).
“Earlier today these tireless advocates were walking the hallowed halls of the Capitol meeting with lawmakers and their staffs urging them to support three priorities,” said Kevin Longino, National Kidney Foundation CEO. “Legislation to establish a pilot program to improve early detection, care and outcomes for people with chronic kidney disease; Support for H.R. 1270, the newly introduced Living Donor Protection Act; and funding for CKD programs run by the Centers for Disease Control [and Prevention], National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) and Health Resources and Services Administration (HRSA).”
The Living Donor Protection Act 2017, introduced by Reps. Jerrold Nadler (D-N.Y.) and Jaime Herrera Beutler (R-Wash.), would prohibit discrimination in life, disability or long-term care insurance for living organ donors, add living donation to the Family Medical Leave Act and support funding for CKD programs run by the CDC, NIDDK and HRSA.
“My own personal story with kidney disease is similar to many of the people here,” Longino said. “Even though my grandfather died from kidney disease and my mother had a history of kidney disease, I was still caught off-guard by my diagnosis 18 years ago.
“I thought I had escaped kidney disease — but like 26 million other Americans, I had not,” he said. The problem with kidney disease is that the symptoms are hidden. In fact, 90 percent of people with the disease don’t even know they have it. Once kidneys fail, dialysis or a transplant is needed just to stay alive.”
At the summit, individuals who have kidney disease, dialysis patients, living donors, family members and caregivers were united by the affirmation and hashtag #MyKidneysMyLife to underscore the direct relationship between having at least one healthy kidney and living at all.
“‘My Kidneys, My Life’ is not just a slogan, it’s a mantra based on facts and a plea for more public awareness,” Longino said.
He said that in May 2004, he got his life back.
“I received a kidney from a deceased donor, and there isn’t a day that goes by when I am not thankful to this family for giving me a second chance at life,” Longino said. “Many kidney patients never get that chance. The wait list for a deceased donor is long and 12 kidney patients die every day waiting.
“Increasing living organ donation could help solve the wait list problem, but why do we have to make it so hard for living donors?” he said. “Why do we have so many barriers to donation? It isn’t right. It isn’t fair to the patients and families who are waiting for help.”