Advocates from Across the U.S., Child Singer Angelica Hale headed to Washington for 6th Annual Kidney Patient Summit

 

 

New York, NY, March 4, 2019 — Advocates from kidney organizations around the country – joined by 11-year-old singing phenom and kidney transplant recipient Angelica Hale – will converge on Capitol Hill to meet with their lawmakers to inspire action for kidney disease at the 6^th Annual Kidney Patient Summit on March 4th and 5^th in Washington, D.C. The event, led by the National Kidney Foundation (NKF), brings together members of the NKF Kidney Advocacy Committee and advocates from Alport Syndrome Foundation, American Association of Kidney Patients, and the PKD Foundation. Secretary of Health and Human Services Alex M. Azar II will meet with patients and their families at the Summit and deliver a speech about the work the U.S. Department of Health and Human Services is doing to improve outcomes for kidney patients. (See time/location details below.)

 

Advocates representing nearly all 50 states – learn who they are –  will share their stories and urge Members of Congress to support public policy priorities, which advance chronic kidney disease (CKD) prevention, early detection, treatment, research and access to transplants, including living organ donation. Advocates will especially encourage their legislators to support The Living Donor Protection Act of 2019, introduced earlier this month by four bi-partisan Members of Congress, Representatives Jerry Nadler (D-NY) and Jaime Herrera Beutler (R-WA) joined by Senators Kirsten Gillibrand (D-NY) and Tom Cotton (R-AR), to protect living donors and remove barriers to donation. Under this act, insurance companies would be prohibited from denying or limiting life, disability and long-term care insurance to living donors and from charging higher premiums.  The Living Donor Protection Act of 2019 also would ensure job protections for organ donors who need to take medical leave for organ donation and recovery after surgery.

 

The Summit officially opens Monday, March 4^th at the Holiday Inn Washington-Capitol with afternoon training meetings for Kidney Advocacy Committee members, their families, and care partners, who will use their collective experiences related to kidney disease to champion NKF’s legislative priorities. A featured special guest speaker will be Secretary of Health and Human Services Alex M. Azar II who will speak about transforming kidney care, from 1:30 p.m. to 2:00 p.m. EST, in the Capitol Ballroom at the Holiday Inn Washington-Capitol, 550 C Street, SW, Washington, DC 20024. Press are invited to attend, RSVP to NKF media contacts.

 

The Summit will also feature another special guest, Angelica Hale, the first-ever NKF Kid Ambassador, who will be on Capitol Hill on Tuesday, March 5^th. She, as well as her loving and supportive parents, will be returning to the Summit in continued support of NKF’s legislative priorities and as a kidney patient herself.

 

At age 4, Angelica’s kidneys failed. Her mother, Eva Hale, donated one of her own kidneys to her daughter to save her life. Today, both mother and daughter are healthy.

 

“I’m so proud to go back to Washington D.C., to bring attention to kidney disease as NKF Kid Ambassador for a second year,” said Angelica of television’s America’s Got Talent fame. “My mom is my hero, because she brought me and my dreams of singing back to life. I’m glad I get to be a hero by helping kidney patients like me, so they can reach their own dreams!”

 

 

Miss New York 2018 Rahmeka Cox will also attend the Kidney Patient Summit as an advocate against kidney disease. Her connection to chronic kidney disease is two-fold: she is the daughter of a transplant recipient and the sister of a living donor. Cox will meet with her Members of Congress on Tuesday, March 5th, at 2 p.m. and 4 p.m. Later that evening, she will deliver a speech at the Congressional Awards Reception, to be held at The Capitol View at 400, The Hall of States, 444 North Capitol Street, N.W., Washington, D.C., 20001, from 6 p.m. to 7:30 p.m. Press are invited to attend; please RSVP to julie.kimbrough@kidney.org or nichell.taylorbryant@kidney.org.

 

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 respective lawmakers on Tuesday, March 5^th.

 

“We sincerely thank Secretary Azar for attending the Summit. Our advocates are looking forward to meeting him and hearing first-hand about what HHS is doing to improve outcomes for kidney patients and his vision for transforming kidney care,” said Kevin Longino, CEO of the National Kidney Foundation and a kidney transplant patient.  “I’m so inspired by our advocates who travel each year to the Kidney Patient Summit. They continue to help push for legislation that would improve the lives of millions of Americans who are living with or affected by kidney disease. Kidney patient advocacy is the heart of our work at NKF. It gives voice to patients and families as they speak personally to their Members of Congress to make sure they are not forgotten.”

 

Whether traveling from far away or locally; or by air, rails, bus or car, the Kidney Patient Summit has become a must-attend event – especially for kidney 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, D.C. 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.

 

In the United States 30 million adults are estimated to have chronic kidney disease—and most aren’t aware of it.  1 in 3 American adults are at risk for chronic kidney disease.  Risk factors for kidney disease include diabetes, high blood pressure, heart disease, obesity and family history.  People of African American, Hispanic, Native American, Asian or Pacific Islander descent are at increased risk for developing the disease.  African Americans are 3 times more likely than Whites, and Hispanics are nearly 1.5 times more likely than non-Hispanics to develop end stage renal disease (kidney failure).