CORONAVIRUS EXPANDS KIDNEY PATIENT VIRTUAL ENGAGEMENT WITH WHITE HOUSE AND CONGRESS

For Immediate Release: March 10, 2020

 

Washington, D.C. – The American Association of Kidney Patients (AAKP), the nation’s largest fully independent kidney patient organization, today announced that given the serious threat posed by the Coronavirus to the kidney patient community, they are encouraging all patients and their families to avoid unnecessary travel, including all planned travel to Washington, D.C. during National Kidney Month in March and for the immediate future.  Historically, hundreds of kidney patients and their families travel to the nation’s capital to discuss policies related to patient care choice and medical innovation with White House and Congressional officials.

 

As an alternative, AAKP is encouraging patients to expand their engagement with key Federal policy-makers through AAKP’s virtual and social media platforms and to focus their online Coronavirus education on official Federal sources including the Centers for Disease Control (CDC) and the National Institutes of Health (NIH). AAKP’s capacities for virtual patient engagement have played a strategic role in organizing nationwide kidney patient support for groundbreaking bipartisan kidney policies including President Trump’s 2019 Executive Order on Advancing American Kidney Health, Congressional authorization of the 21st Century Cures Act and Congressional action allowing the transplantation of HIV positive donated organs into HIV positive patients.

 

Stephen Fadem, MD, FACP, FASN and Chair of the AAKP Medical Advisory Board stated, “Kidney patients across the chronic disease spectrum have severely compromised immune systems and often many other medical conditions, particularly transplant recipients whose medications suppress their immune systems, making them a highly vulnerable population to viruses like the flu and Coronavirus.  Elderly patients with chronic kidney disease are especially vulnerable.  This is why AAKP is encouraging all kidney patients, their families and their friends to observe all hygiene prevention protocols related to battling viruses; follow the guidance from the CDC and their medical teams; and seriously reconsider any non-essential commercial travel or major public events that might expose them to a virus threat.”

 

Richard Knight, AAKP President and a 14-year kidney transplant recipient and former dialysis patient stated, “National Kidney Month presents an opportunity for kidney patients to inform White House officials and Congressional leaders about the importance of patient care choice and the impact of kidney disease on their lives, families and careers.  The Coronavirus is a serious threat and AAKP asks all patients and their families to limit risks posed by travel and to instead make full use of all AAKP virtual platforms to participate in AAKP-led virtual Capitol Hill visits and to access official healthcare information.”  Knight is a Capitol Hill staff veteran and participates in numerous Federal agency kidney health and medical innovation initiatives.

 

Paul T. Conway, Chair of AAKP Policy and Global Affairs and a 23-year transplant recipient stated, “AAKP online and social media technologies allow kidney patients to use their mobile devices to engage policy-makers and access timely health information from anywhere in the world, including from their home, office or dialysis center.  As the Coronavirus public health crisis intensifies, AAKP will use our virtual platforms to both share official Federal public health data and to provide key Federal policy-makers with our independent kidney patient survey insights and patient concerns related to virus impact.”  Conway serves as AAKP liaison to the Federal Health Infection Control Practices Advisory Committee, (HICPAC), a Federal Advisory Committee appointed to provide advice and guidance to the CDC and Department of Health and Human Services (HHS) regarding the practice of infection control and strategies for surveillance, prevention, and control of healthcare-associated infections, antimicrobial resistance, and related events in healthcare settings.

 

AAKP virtual platforms and social networks are internationally known for their reach and impact.  In 2019, AAKP, in collaboration with the George Washington University School of Medicine and Health Sciences, utilized its virtual capacities to livestream the Inaugural Global Summit on Kidney Disease, engaging over 10,000 kidney patients, health system administrators and medical experts in over 50 countries. Since 2018, AAKP has conducted the largest virtual kidney voter registration drive in the nation, the I am a Kidney Voter” campaign, which has registered patients in every state.  Over the past three years, AAKP virtual capacities also organized grassroots kidney patient opposition that lead to the Congressional defeat of the highly controversial Dialysis Patients Demonstration Act (DPDA), a dialysis industry-sponsored piece of legislation designed to deny kidney patients true choice in their own care and which would have negatively impacted access to organ transplants.

 

For more information about AAKP’s educational and advocacy programs, visit www.aakp.org and www.aakp.org/center-for-patient-engagement-and-advocacy/action-center/. Follow AAKP on social media via Facebook: @kidneypatient; Twitter and Instagram: @kidneypatients.

 

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Media Contact: Deborah Pelaez, Marketing and Communications Manager, 813-400-2394 or dpelaez@aakp.org