Nearly 150 advocates from six kidney organizations converged on Capitol Hill on Tuesday to meet with lawmakers as part of the 4th Annual Kidney Patient Summit organized and led by the National Kidney Foundation (NKF). Advocates urged Congress to support legislation to create a pilot program to improve early detection, care and outcomes for people with chronic kidney disease, support H.R. 1270, The Living Donor Protection Act 2017, which will prohibit discrimination in life, disability or long-term care insurance and add living donation to the Family and Medical Leave Act.
In the middle of these meetings, a press conference was held to address the importance of this legislation. Press conference speakers included: Kevin Longino, CEO, NKF; Representative Jerrold Nadler (D-NY); Representative Jaime Herrera Beutler (R-WA); Representative Brett Guthrie, (R-KY); Kent Bressler, kidney recipient, Kerrville, TX; Kelly Cline, mother of kidney recipient Hannah Shelton, Glen Allen, VA; Alex Fox, kidney donor, Star, ID; Ewo, Harrell, kidney recipient, Providence, RI; Christopher Melz, kidney donor, Huntington Station, NY; Luis and Noelia Rodriguez, kidney recipient and donor, Sioux Falls, SD; and Matthew Scroggy, kidney recipient, Columbus, OH.
Kevin Longino, CEO, National Kidney Foundation, stressed the need to remove barriers to living donation to help solve the long wait list time for patients to receive a deceased donor organ. “Twelve kidney patients die every day waiting. Increasing living organ donation could help solve the wait list problem,” he said. Representative Nadler, a long-time champion for kidney patients, spoke of his staff person whose child needed a kidney transplant and The Living Donor Protection Act, which he introduced last week to help protect living donors and increase donation. In her heartfelt remarks, Representative Herrera Beutler, who co-sponsored the legislation, spoke of her daughter, Abigail, who was born without any kidneys and is the first child known to have survived Potter Syndrome. Abigail received a kidney from her dad, Dan Beutler.
Representative Guthrie spoke of his then eight-year-old son, who became ill and they found out he was born with one functioning kidney and one that was malformed. Another pair of mother-daughter speakers were Kelly Cline and her daughter Hannah Shelton, who shared the fear Hannah’s dad felt after becoming her living donor—not of the surgery or recovery but fear of losing his job. Said Cline, “He’d just given the gift of life to another human being but because there are no federal job protections for living donors under the Family and Medical Leave Act, he returned to work too soon and put his own health at risk.” Alex Fox, who has no connection to kidney disease, shared how he was inspired to donate a kidney through a compelling Facebook post, “I saw the request, along with pictures of Darienne, a child who has special needs just like my son, and it struck a chord. Helping a complete stranger is pretty awesome.”
Kent Bressler tearfully expressed his gratitude for his brother’s kidney donation to him 30 years ago, saying, “His gift allowed my girls to grow up with their dad; my wife to grow old with her husband; my grandchildren the chance to know me.” Ewo Harrell, a young and vibrant graduate student at Brown University who received a transplant from her sister said, “I had never heard of kidney failure or kidney disease, and I did not know that as an African American I was at increased risk for developing the disease.” Christopher Melz, who donated his kidney to a childhood friend, noted that you don’t have to be the same race or gender to donate a kidney, but your blood and tissue types do need to match. Though some call living donors heroes, Melz insisted that the term does not apply to him, “I’m just a guy who cares about his friends and family and needed to do what was right.”
Luis and Noelia Rodriguez, husband and wife, shared how Luis was diagnosed with stage 5 kidney disease unexpectedly. “I had no idea I had kidney disease. I was out for a walk with my daughter and nearly collapsed,” said Luis. “I went to the ER for lab tests and by the time I drove back home, I was told to get to the hospital immediately.” Matthew Scroggy, a young pharmacist, also spoke of how shocking it was to be diagnosed, “I was a healthy 22-year-old in my first year of pharmacy school, I had no history of kidney disease and took no medications. After diagnosis, it was pretty much the same except I now needed a transplant and took 29 pills a day.”
To read more remarks from the speakers, please visit https://www.kidney.org/news/2017-kidney-patient-summit-speaker-remarks.