ROCKVILLE, Md. (July 16, 2020) — Dialysis patients, kidney transplant recipients and kidney donors were among the 23 American Kidney Fund (AKF) Ambassadors who this week participated in a "Virtual Fly-in" to urge their legislators to take action on issues important to kidney patients. The COVID-19 pandemic forced AKF to cancel its annual in-person advocacy day on Capitol Hill, originally scheduled for April.
The AKF Ambassadors — from 15 states and the District of Columbia — met by phone with their U.S. Representatives' and U.S. Senators' offices and asked them to support three important pieces of legislation to help address health disparities and improve the lives of Americans living with kidney disease:
- H.R. 6637, Health Equity and Accountability Act (HEAA) of 2020. This bill aims to address many of the root causes of health disparities in a number of ways, such as improving health care access and quality and enhancing language access and culturally competent care. It contains several provisions that address kidney disease directly.
- H.R. 6561, Improving Social Determinants of Health Act of 2020. This bill would create a social determinants of health (SDOH) program at the Centers for Disease Control and Prevention (CDC) to focus on the social, economic and environmental conditions that affect health and wellbeing and are significant contributors to health disparities.
- H.R. 5534 / S. 3353, Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act. This legislation would extend Medicare coverage for immunosuppressive drugs — currently at three years for patients under 65 — for the life of the transplanted kidney.
AKF has long fought health disparities, which have been brought into sharp focus by the COVID-19 pandemic which, like kidney disease, has a disproportionate impact on communities of color.
Patrick Gee, an AKF Ambassador from North Chesterfield, Virginia, is a Black man living with a kidney transplant and recovering from COVID-19. "Today's AKF Fly-in left me with a feeling of hope and optimism that these three pieces of legislation will change the course of history in the kidney community," he said. "When you can hear and see the humanity in one's reflection over the injustices that kidney patients have endured for decades, you can sense that the atmosphere is ripe for change to occur. The barriers, obstacles, and biases that prevented patients of color from receiving equitable quality of care, treatment, access to affordable health care, and innovative medicines and technologies are soon to be a thing of the past."
Most Americans with end-stage renal disease (ESRD, or kidney failure) who begin dialysis automatically qualify for Medicare regardless of their age. But for patients under 65 who receive a kidney transplant, Medicare eligibility expires after three years — even though they must continue taking immunosuppressive drugs to prevent their body from rejecting their kidney. Patients who cannot find alternative health insurance and cannot afford their immunosuppressive drugs ultimately lose their kidney and must go back on dialysis, which makes them again eligible for Medicare. Recent projections from two different offices within the Department of Health and Human Services show significant Medicare savings if immunosuppressive drug coverage were extended to all Medicare ESRD beneficiaries indefinitely.
When Amelia Rowniewski, from Wallington, New Jersey, was only 3 years old, she received a kidney transplant. At age 6 she took her first trip to Washington, D.C. to be recognized at AKF's annual gala, The Hope Affair, as the Calendar Kids cover artist for the 2013 AKF calendar. Now a 15-year-old about to start her sophomore year of high school, she became an AKF Ambassador and participated in the Virtual Fly-in.
"I was excited and humbled to speak on behalf of thousands of patients battling kidney disease," she said. "I hope my voice and that of the other AKF Ambassadors was loud enough to be heard in Washington D.C. It was an unforgettable day and an incredibly important opportunity to make a real difference in the lives of so many kidney patients. I hope my voice helped."
The HEAA bill contains important provisions specifically addressing kidney disease, including increased research into kidney disease in minority populations and inclusion of minority participants in clinical trials; creation of an action plan by the NIH around public health strategies, prevention, diagnosis, disease management, and awareness of kidney disease; requiring the NIH to develop a national action plan to increase access to home dialysis; expanding research into kidney transplant rates in minority populations; studying treatment patterns by insurance type (Medicare, Medicaid, private insurers) in minority populations and examines how these impact access to care; and adding dialysis to the definition of primary care services, which would increase access to care in underserved areas.
"It was important to me to participate in AKF's Virtual Fly-In because we are fighting for issues that directly affect minority communities," said Leigh-Ann Williams, a dialysis patient from Marrero, Louisiana. "As a Black American with a Master's in Public Health, I know firsthand how health disparities influence health equity and lead to disproportionate numbers of chronic disease cases in minority communities. This is why we fight!"
AKF is grateful to its corporate members whose support makes its advocacy work possible: Alexion Pharmaceuticals, Inc.; Amgen; Ardelyx, Inc.; AstraZeneca; Aurinia Pharmaceuticals Inc.; Biotechnology Innovation Organization; GSK; Horizon Therapeutics plc; Omeros Corporation; Otsuka America Pharmaceutical, Inc.; PhRMA; Relypsa, Inc.; Sanofi Genzyme; Tricida, Inc.; and Vertex Pharmaceuticals, Inc.
About the American Kidney Fund
The American Kidney Fund (AKF) fights kidney disease on all fronts as the nation’s leading kidney nonprofit. AKF works on behalf of the 37 million Americans living with kidney disease, and the millions more at risk, with an unmatched scope of programs that support people wherever they are in their fight against kidney disease—from prevention through transplant. With programs that address early detection, disease management, financial assistance, clinical research, innovation and advocacy, no kidney organization impacts more lives than AKF. One of the nation’s top-rated nonprofits, AKF invests 97 cents of every donated dollar in programs, earning the highest 4-Star rating from Charity Navigator for 20 years in a row as well as the Platinum Seal of Transparency from Candid, formerly GuideStar.