The American Association of Kidney Patients (AAKP), the largest kidney patient organization in the United States, released the following statement regarding the bipartisan U.S. Senate approval of immunosuppressive drug coverage for kidney transplant patients. The language was included within the process related to bipartisan Senate actions surrounding the COVID-19 relief package and the $1.4 trillion omnibus spending bill. The current, arbitrary 36-month limit on kidney transplant drugs was an aberration in the American ethos of human decency, a barrier to increased kidney transplantation, costly to American taxpayers, and devastating to transplant recipients who lost their kidney to an interruption in their immunosuppressive drug coverage.
The Senate action follows similar action by the U.S. House of Representatives on December 8, 2020 (read AAKP announcement). It recognizes Congressional Budget Office reports that the policy change will positively impact hundreds of kidney transplant patients every year and save taxpayers hundreds of millions of dollars over the next ten years. Kidney transplant patients are required to take a lifetime course of immunosuppressive drugs to keep their transplanted kidneys working and prevent organ rejection. Interruptions to drug coverage have serious impacts on transplant recipients, lead to organ rejection, and a return to high cost, high mortality dialysis, a comparatively less ideal treatment for kidney failure.
“Today, kidney transplant patients, along with those still awaiting life-saving kidney transplants, witnessed bipartisan Congressional action that will save patient lives and livelihoods while honoring America’s heroic and selfless kidney donors and their families. AAKP salutes all advocates who fought to secure this policy, and we honor the memory of our fellow kidney patient advocates whose lives ended before they could celebrate this victory. The arbitrary 36-month limit on kidney transplant drugs was an aberration in the American ethos of human decency, a barrier to increased kidney transplantation, costly to American taxpayers, and devastating to transplant recipients who lost their kidney due to an interruption in their immunosuppressive drug coverage. AAKP respectfully asks President Donald J. Trump to immediately sign the COVID-19 relief package and new transplant drug coverage protections, especially since Congress has now followed his call for policies that support more kidney transplants, as outlined in his historic 2019 Executive Order on Advancing American Kidney Health.
AAKP thanks Senate Majority Leader Mitch McConnell (R-KY), Senate Minority Leader Chuck Schumer (D-NY), Senator Bill Cassidy (R-LA), Senator Dick Durbin (D-IL) and Senator Joe Manchin (D-WV) and their colleagues across Congress for listening to the voices of kidney patients, reversing this injustice, and enacting a reform that strengthens kidney patient consumer care choice. We also express our gratitude to U.S. Secretary of Health and Human Services Alex Azar, Comptroller General of the United States Gene Dodaro, and Congressional Budget Office Directors Phillip Swagel, predecessor Keith Hall, and their staffs for their collaborative work with kidney patients and AAKP over many years.”
In 2019, upon the signing of President Trump’s Executive Order on Advancing American Kidney Health, AAKP launched The Decade of the Kidney™, a strategic effort to organize kidney patient consumers nationally and globally to drive policies to prevent kidney injury and disease, support greater patient care choice, drive innovations including artificial implantable and wearable kidneys, and timely access to treatment options including preemptive kidney transplants.
In November of 2020, over 25 AAKP kidney advocates were recognized with the Presidential Volunteer Service Award (PVSA) for their ongoing advocacy for kidney transplants and response to the COVID-19 pandemic (read the announcement). AAKP patient volunteers accelerated the organization’s national and global impact through sophisticated virtual platforms, international patient group partnerships, clinical journal editorials, television, radio, social media, and a growing Patient Ambassador Initiative. At the start of the COVID-19 pandemic, AAKP transitioned all 2020 events to free virtual access, prioritized COVID-19 topics, and leveraged tactics to engage a wider audience. In the past eight months, AAKP has broadcasted expert COVID-19 insights through one global and two national virtual events, a dozen webinars, and launched advocacy campaigns to highlight disparities in minority and kidney patient representation in COVID-19 clinical trials and vaccine distribution protocols. Viewership for 2020 AAKP programs now exceeds 80,000 people across 70 countries and is growing rapidly. International and national program faculty has included 90 medical practitioners and researchers and 60 patient experts. The AAKP Global Summit on Kidney Innovations, conducted in partnership with The George Washington University School of Medicine and Health Sciences, alone reached over 20,000 patients and professionals worldwide in July of 2020.
AAKP Board Members and patient members play key roles in top federal initiatives, including implementation of the Executive Order on Advancing American Kidney Care; the National Institutes of Health/National Institute of Diabetes and Digestive and Kidney Diseases (NIH/NIDDK) Kidney Precision Medicine Project (KPMP); the U.S. Food and Drug Administration (FDA) Patient Engagement Advisory Committee (PEAC), the Kidney Health Initiative (KHI), a partnership between the FDA and the American Society of Nephrology as well as the U.S. Department of Health and Human Services Kidney Innovation Accelerator, or KidneyX.
AAKP National Board Officers and Directors
- Richard Knight, MBA, President; transplant recipient
- Edward V. Hickey, III, USMC, Vice President; Chair, Veterans Health Initiative; kidney patient
- Suzanne Ruff, Treasurer, and living organ donor
- Daniel Abel, Secretary; transplant recipient
- Paul T. Conway, Immediate Past President; Chair of Policy and Global Affairs; transplant recipient
- Kent Bressler, MA, RN, pre-emptive transplant recipient
- Patrick O. Gee, Sr., transplant recipient
- Doug Johnson, MD, Vice Chairman of Dialysis Clinic, Inc.
- Jennifer Jones, USMC; transplant recipient
- Janice Lea, MD, MSc, FASN, Professor of Medicine at Emory University; Clinical Director of Nephrology; Chief Medical Director of Emory Dialysis
- James W. Myers, III, transplant recipient
- David Rodriguez, transplant recipient
- Dale Rogers, transplant recipient
- Sara Eve Schaffer, MBA, MA, RD; Executive Director for the Health Services Advisory Group, Inc.
- Lana Schmidt, MBA; transplant recipient
- Barry Smith, MD, Ph.D.; Director of Dreyfus Health Policy and Research Center
AAKP Medical Advisory Board
- Dr. Stephen Z. Fadem, MAB Chairman, Clinical Professor of Medicine at Baylor College of Medicine Section of Nephrology
- Dr. Akhtar Ashfaq, Senior Vice President of Clinical Research & Development and Medical Affairs at OPKO Renal
- Dr. Timothy Bunchman, Professor and Director Pediatric Nephrology at Children’s Hospital of Richmond
- Dr. Richard Glassock, Professor Emeritus of David Geffen School of Medicine at UCLA
- Dr. Frederick J. Kaskel, Director of the Division of Pediatric Nephrology, Children’s Hospital at Montefiore
- Dr. Peter A. Laird, Internal Medicine Specialist at Kaiser (ret.)
- Dr. Nathan Levin, Founder and past Medical and Research Director of Renal Research Institute
- Dr. Robert Miller, Pediatric Nephrologist at New Mexico Children’s Kidney Center
- Dr. William B. Mitch, Professor of Medicine at Baylor College of Medicine Section of Nephrology
- Dr. Keith Norris, Professor of Medicine at David Geffen School of Medicine at UCLA
- Dr. Rebecca Schmidt, Professor and Chief of the Division of Nephrology at West Virginia School of Medicine
- Dr. Thomas G. Peters, Professor of Surgery at the University of Florida
- Dr. Leslie P. Wong, Chief Medical Officer of Nephrology Care Alliance and Associate Medical Director of Cleveland Clinic ACO