American Kidney Fund Ambassadors Travel to Capitol Hill to Urge Congress to Protect Living Kidney Donors and Preserve Safety Net for Low-income Patients

AKF Congressional briefing with KidneyX director focuses on minority health disparities in kidney disease and research innovations that offer hope

ROCKVILLE, Md. (April 2, 2019) –American Kidney Fund (AKF) Ambassadors — kidney patients, caregivers and family members — from 18 states and the District of Columbia will meet with their representatives in Congress on Wednesday, April 3, to urge lawmakers to support legislation and policies that improve the lives of kidney patients.

AKF's annual Advocacy Day on Capitol Hill will begin with a Congressional briefing, "Kidney Disease and Minority Communities: Charting a Path Forward," which will highlight the impact of kidney health disparities and provide a glimpse into advances in prevention, diagnosis and treatment of kidney diseases for minority populations. April is both Minority Health Month and Donate Life Month.

Dr. Sandeep Patel, Open Innovation Manager and Director of the Kidney Innovation Accelerator (KidneyX) program at the U.S. Department of Health and Human Services, will provide an update on this vital public-private partnership. Other featured speakers include AKF Board member Dr. Donna Christensen, former U.S. Delegate representing the U.S. Virgin Islands and a longtime advocate for public policy to improve health in minority communities; AKF Ambassadors Frances Ashe-Goins and Patrick Gee; and the founders of Prime Time Sister Circles, a program designed to empower mid-life African-American women to make health their first priority. The one-hour program begins at 10 a.m. in room 1539 of the Longworth House Office Building.

During Congressional visits after the briefing, AKF Ambassadors will urge their U.S. Representatives and Senators to support the Living Donor Protection Act of 2019, legislation that would protect living organ donors from discrimination by life, disability and long-term care insurers, and guarantee job-protected leave for anyone who donates an organ. AKF is also working in 14 states to promote similar legislation; passage of the federal law would provide a baseline of uniform protections nationwide.

The Ambassadors will also ask their representatives to protect a vital safety net that low-income kidney failure patients depend on — charitable assistance for health insurance premiums from nonprofits, including AKF. Healthcare payers, primarily insurers and labor unions, are working at the state and federal levels to remove kidney patients from the insurance rolls by curtailing their ability to receive such assistance. Patients who can't afford the premiums are at risk of losing the insurance that is essential for them to receive the medical care they need to stay alive.

"It's so important for legislators and policy makers to hear the voices of the people who are affected by their decisions," said LaVarne A. Burton, AKF president and CEO. "Kidney disease does not get the same level of attention as many other diseases, yet it affects 30 million Americans. Our Ambassadors are coming to Washington to shine a light on the unique burdens this disease places on some of our most vulnerable citizens."

AKF's Advocacy Day on Capitol Hill is made possible thanks to major support from corporate sponsors PhRMA and Mallinckrodt Pharmaceuticals, with additional support from BIO and Otsuka America Pharmaceutical, Inc.