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AAKP’s 3rd Annual Policy Summit highlights progress and barriers related to the 2019 Executive Order on Advancing American Kidney Health and key Congressional issues

WASHINGTON, D.C. – The American Association of Kidney Patients (AAKP) conducted its 3rd Annual Policy Summit virtually on August 6, bringing together diverse expert perspectives on key Executive Branch issues and Congressional legislation aimed at improving patient outcomes and saving lives. Founded in 1969, the AAKP is the oldest and largest fully independent kidney patient organization in the United States and is a nationally recognized leader in patient education, promotion of innovation, and defense of kidney patient consumer care choice.

The virtual Policy Summit, entitled “Kidney Issues on the National Radar,” engaged thousands of viewers who listened to patient-led policy conversations among federal officials, key inside policy influencers, medical professionals, and innovation leaders within the kidney medicine space. The backdrop for the Summit was the one-year anniversary of the historic Executive Order (EO), Advancing American Kidney Health, signed by President Donald Trump on July 10, 2019. AAKP, alongside their national kidney allies, played a key role in the stakeholder deliberations leading up to the EO and has been closely monitoring implementation progress. Congressional issues discussed at the Summit included the Living Donor Protection Act (H.R. 1224 / S. 511) and the Immunosuppressant Drug Coverage for Kidney Patients Act (H.R. 5534 / S. 3353). AAKP, through its sophisticated social media and online and grassroots engagement tools, has activated thousands of patients on both issues through the AAKP Action Center. AAKP and its strategic allies, the American Society of Transplantation and the American Society of Transplant Surgeons, have written letters asking Congress for swift passage of the immunosuppressant coverage act (read joint letter from AAKP, AST, and ASTS).

AAKP President Richard Knight, a 14-year transplant recipient, stated, “The 2020 Policy Summit provided patients across America with timely updates on the progress and barriers related to the Executive Order on Advancing American Kidney Health and legislation that can improve patient outcomes. COVID-19 has taught kidney patients an unforgettable lesson: we are at high risk and our lives depend upon timely treatments, greater medical innovations, and unfettered patient consumer care choice to the treatments that best serve our needs and protect our lives.” Knight has served in multiple kidney advocacy roles and is a former U.S. Congressional staff member and liaison to the Congressional Black Caucus.

AAKP Chair of Policy and Global Affairs Paul T. Conway stated, “AAKP has a fifty-year history of results in the policy arena and, for the past ten years, we have carefully worked with our allies to build the capacities necessary to put kidney patients at the table throughout national policy deliberations. We will disseminate key Summit observations to patients across the country, accelerate our I am a Kidney Voter registration drive, and encourage all elected leaders, regardless of their party affiliation, to actively advance policies that expand patient care choice and innovation and to reject policies that protect outdated status quo kidney care.” Conway is a 40-year kidney patient who has served in policy positions under three U.S. presidents, three state governors, and in support of five presidential transitions

Since 2018, AAKP has conducted the largest virtual kidney voter registration drive in America, the “I am a Kidney Voter” campaign, which has registered patients in every state. AAKP launched the I am a Kidney Voter campaign in response to patient demands to defeat the Dialysis Patient Demonstration Act, a bill that would have denied kidney patients a choice in their own care. That legislation was defeated multiple times, and AAKP grassroots leaders are taking similar aim at the anti-choice BETTER Kidney Care Act. The nonpartisan voter registration campaign is directed by kidney patient volunteers whose grassroots experience includes hundreds of national issues, state referendum, and political campaigns.

This year’s Policy Summit follows the record-breaking Global Summit AAKP hosted in July in partnership with The George Washington (GW) University School of Medicine & Health Sciences (SMHS), which engaged experts and viewers from over 70 countries. Both events are related to AAKP’s Decade of the Kidney™ (2020-2030) initiative.

For more information on the 3rd Annual Policy Summit or to view the event, click here. AAKP thanks its current 2020 Policy Summit sponsors: Amgen, Inc.; CareDx, Inc.; Bayer; Mallinckrodt Pharmaceuticals; Horizon Pharma; Baxter; and Aurinia Pharmaceuticals.


About the American Association of Kidney Patients (AAKP): AAKP is among the strongest advocates for kidney patient consumer care choice and treatment innovation. From 1969-1973, AAKP patients led the effort in the U.S. Congress, alongside senior White House officials, to establish the End Stage Renal Disease Program, which has saved over a million lives through modern dialysis coverage. For more information, visit www.aakp.org. Follow AAKP on social media: @kidneypatient on Facebook, and @kidneypatients on Twitter.

Jennifer Duplessie
Marketing and Communications Manager
(813) 400-2394