Advocates from Across the U.S Convene for Virtual Kidney Patient Summit

Proponents including actor, activist, entrepreneur Wilmer Valderrama, team up to fight for kidney health

 

New York, NY – September 15, 2020 — Advocates from kidney organizations around the country will converge virtually on September 16th for meetings with their Congressional delegations to inspire action for kidney disease at the 7th Annual Kidney Patient Summit. Originally scheduled as an in-person Summit to be held in the nation’s capital last March, due to COVID-19 the event was rescheduled for this week and will be held virtually. The event, led by the National Kidney Foundation (NKF), brings together members of the NKF patient-based Kidney Advocacy Committee and advocates from the Alport Syndrome Foundation, IGA Nephropathy Foundation of America, and PKD Foundation.  As COVID-19 creates more kidney patients, their message is more urgent now than ever. 

Advocates representing nearly all 50 states will share their stories and urge their Congressional delegations to support public policy priorities that advance kidney disease prevention, early detection, treatment, research and access to transplants, including living organ donation.  

Actor, activist, and entrepreneur Wilmer Valderrama will lead a virtual briefing for Congressional staff on September 16th on the impact of kidney disease to Hispanic communities and will meet individually with Members of Congress to stress the importance of policies that promote kidney health. Valderrama is serving as a national spokesperson for the “Are You the 33%?” campaign, which is available in English and in Spanish, and focuses on the 33 percent of adults in the U.S. at risk for developing dangerous, life-threatening kidney disease. Risk factors include diabetesheart diseasehigh blood pressureobesity and family history of kidney disease. Black or African American and Hispanic or Latino people are also at greater risk of developing kidney disease.

During their individual meetings with Members of Congress and staff, Kidney Patient Summit advocates will specifically be asking policymakers to: 

  • Pass the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act (HR 5534/S.3353) which extends Medicare coverage of immunosuppressive drugs for kidney transplant patients beyond the 36-month cut-off currently in place to cover medications for the life of the transplant;
  • Increase funding for kidney disease research and programs including a nationwide Kidney Risk Campaign to reach the undiagnosed who are unaware they are affected by kidney disease. An estimated 37 million adults in the U.S. are affected by kidney disease but 90% are unaware they even have it. Many patients don’t learn they have kidney disease until their kidneys have already failed. Early diagnosis can help stave off the deadly complications of this disease including dialysis and kidney transplant; and 
  • Pass the Living Donor Protection Act (S. 511 and H.R. 1224), which prohibits insurance companies from denying or limiting life, disability and long-term care insurance to living donors and from charging higher premiums, and also ensures job protections for organ donors who need to take medical leave for organ donation and recovery after surgery.

 

The Kidney Patient Summit is focused on individuals who have kidney disease, dialysis patients, living donors, family members and caregivers, all 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. Advocates will emphasize this message during personal meetings with their Congressional delegations on Tuesday, September 16th

“I’m continuously inspired by our advocates, who help push for legislation to improve the lives of the 37 million adults in the U.S. living with kidney disease,” said Kevin Longino, CEO of the National Kidney Foundation and a kidney transplant patient. “Each year, the Kidney Patient Summit gives a voice to patients, and those who care for them, as they speak personally to their Congressional delegations to make sure they are not forgotten. This year, more than ever before, we must stress the importance of kidney health and the unique risk and burden kidney patients face with COVID-19. ” 

The Summit officially opens Tuesday, September 15th with virtual training meetings for NKF advocates, their families, and care partners, who will use their collective experiences related to kidney disease to champion NKF’s legislative priorities.  

On Wednesday, September 16th advocates will attend virtual meetings with Members of Congress and their staffs and will participate in a virtual Congressional briefing, “Kidney Health and the Hispanic Community: Are You the 33%?” from 12:30 to 1:30 pm EST featuring Wilmer Valderrama, Sylvia E. Rosas, MD, MSCE, nephrologist and epidemiologist at the Joslin Diabetes Center and the Beth Israel Deaconess Hospital in Boston, MA, Director of the Latino Kidney Clinic at Joslin Diabetes Center and Associate Professor of Medicine at Harvard Medical School; and patient advocate Maria Grijalva, kidney transplant recipient from California. 

Learn more information about the Kidney Patient Summit at advocacy.kidney.org

 

Kidney Disease Facts

In the United States, 37 million adults are estimated to have chronic kidney disease—and approximately 90 percent don’t know they have it.  1 in 3 adults in the U.S. are at risk for chronic kidney disease.  Risk factors for kidney disease include: diabeteshigh blood pressureheart diseaseobesity, and family history. People of Black or African American, Hispanic or Latino, American Indian or Alaska Native, Asian American, or Native Hawaiian or Other Pacific Islander descent are at increased risk for developing the disease. Blacks or African Americans are almost 4 times more likely than White Americans to have kidney failure.  Hispanics are 1.3 times more likely than non-Hispanics to have kidney failure.

 

The National Kidney Foundation (NKF) is the largest, most comprehensive, and longstanding patient-centric organization dedicated to the awareness, prevention, and treatment of kidney disease in the U.S. For more information about NKF, visit www.kidney.org.