Advocates, Child Singer Angelica Hale, and HHS Secretary Bring Plans, Passion to 6th Annual Kidney Patient Summit

 

Washington, D.C., March 6, 2019 — Advocates from kidney organizations around the country – joined by 11-year-old singing powerhouse and kidney transplant recipient Angelica Hale, brought personal stories, passion and purpose to Capitol Hill as they met with their respective lawmakers to inspire and request real action for kidney disease during the 6^th Annual Kidney Patient Summit, held March 4th and 5th in Washington, D.C. The event, led by the National Kidney Foundation (NKF), brought together members of the NKF Kidney Advocacy Committee and advocates from the Alport Syndrome Foundation, American Association of Kidney Patients, and PKD Foundation.

 

Along with meeting patients and their families at the Summit, Secretary of Health and Human Services Alex M. Azar II helped kick-off the event with a speech in which he announced a goal of changing the Medicare reimbursement payment methods to encourage a shift towards home dialysis and kidney transplants for end stage renal disease (ESRD) patients. The model is also expected to impact the earlier treatment of kidney disease. Among other topics, Secretary Azar also talked about how the U.S. Department of Health and Human Services is working to achieve better and more cost-effective ways to deliver dialysis to people in times of emergencies, such as natural disasters.

 

Advocates representing nearly all 50 states shared their stories and urged 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 especially encouraged their legislators to strongly 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 also featured special guest Angelica Hale, the first-ever NKF Kid Ambassador, who, along with her parents and baby sister, began her long day Tuesday, March 5, with a lineup of television interviews, including this one from Good Morning Washington on the ABC network affiliate station in D.C.  Angelica and her family then met with several Members of Congress at their offices 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. At the Kidney Patient Summit’s annual NKF Congressional Awards Reception, Angelica wowed the audience by powerfully singing “Fight Song,” which was selected to encourage people suffering with kidney disease to never stop advocating for action. Watch her amazing performance!

 

The Summit’s NKF Congressional Awards Reception honored two Members of Congress with awards for their support of legislative initiatives to help all those affected by kidney disease, including living donors. The recipients were U.S. Representative Ron Kind (D-WI) and U.S Representative Bill Posey (R-FL).  Also, at the reception, Miss New York 2018 Rahmeka Cox, an NKF Kidney Advocacy Committee member, shared remarks of support for Summit attendees. Her connection to chronic kidney disease is two-fold: she is the daughter of a transplant recipient and the sister of a living donor.

 

The Kidney Patient Summit 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. 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 worked personally with patients well in advance to help accommodate any special needs they had while staying in Washington, D.C. This included 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).