Patients Mark Anniversary of Historic Kidney Executive Order
Former HHS Secretary Alex Azar Says Patients and Their Insights Were Indispensable to Largest Shift in Kidney Care in 50 Years
WASHINGTON, D.C. – The American Association of Kidney Patients (AAKP), the largest independent kidney patient organization in the nation, celebrated the fourth anniversary of the historic 2019 Executive Order on Advancing American Kidney Health by recognizing The Honorable Alex M. Azar, II, the 24th Secretary of the U.S. Department of Health and Human Services (HHS), with its inaugural Global Kidney Leadership and Innovation Award. The award was presented during the fifth annual Global Summit on Kidney Disease Innovations on June 28, 2023, in Washington, D.C. The Global Summit is a partnership of AAKP and The George Washington University School of Medicine and Health Sciences (GW/SMHS). The hybrid event reaches over 100 countries and has gained an audience among tens of thousands of patients and kidney stakeholders worldwide.
Secretary Azar, whose father was a kidney dialysis patient and kidney transplant recipient, was the architect of the Executive Order on Advancing American Kidney Health. The White House action represented the largest shift in American kidney policy in 50 years and was the culmination of extensive discussions Secretary Azar convened with key kidney stakeholder groups. Secretary Azar and his team regularly engaged kidney patient advocates at the policy table, including AAKP patient leaders, as they developed common-sense solutions to transform status-quo kidney care through expanded patient care choice, patient-centered medicine, and long-overdue innovations in kidney diagnostics, drugs, and devices.
In his remarks at the award presentation, Secretary Azar (read full remarks) (watch award presentation and remarks) recognized kidney patients for their great courage and determination to face this disease as they continued the pursuit of their dreams and aspirations. “Your disease does not define who you are – and it should never be used to either control or limit what you attempt to achieve as individuals,” Azar said. He also credited kidney patients as experts and as the “group whose knowledge, sense of urgency, and clarity about the burdens of kidney disease rises above all others.”
Reflecting on the tremendous changes in kidney policy during his 2018-2021 tenure, Secretary Azar stated, “Earlier disease detection, faster interventions, improved dialysis technologies, greater opportunity for organ transplantation and new transplant drugs, and artificial and regenerative organs are now the future of kidney medicine. These changes will result in the reduction of patient burdens, unacceptably high mortality rates, and unnecessary and wasteful spending associated with episodic and crisis kidney care.” AAKP President Edward V. Hickey and Dr. Dominic Raj, Director of the Division of Renal Disease and Hypertension at GW/SMHS and a Co-Chair of the Global Summit, presented the award to Secretary Azar.
Secretary Azar also stated, “The best way to create sound policy and to improve kidney care, here in the U.S. and around the globe, is to work directly with the stakeholders most impacted by disease–this means patients and not simply health systems or providers. It is vitally important for public officials–either appointed or elected–to listen closely to patients because government works for the people, not the other way around.” He continued, “The lesson is clear–the organized voice of kidney patients can change status quo medicine and is key to advancing the next generation of kidney care treatments and cures. I strongly encourage industry to lean forward and work with patients as partners as new devices and therapies are developed.”
As he concluded his remarks, Secretary Azar strongly encouraged kidney patients to defend their shared policy achievements and push for greater progress by saying, “But because in the field of policy there are no permanent victories, only permanent battles–and because polices often change as national leaders and priorities change–kidney patients and their allies must remain fully engaged in the public and policy arena. You must remain vigilant to preserve the changes in kidney policy and practice that we achieved. And you must hold your elected leaders and governments accountable if you believe they waver in their commitment to advancing the best interests of patients.”
AAKP President Edward V. Hickey, III, USMC, stated, “Secretary Azar worked collaboratively across the kidney community to change the national and global narrative of kidney disease as a death sentence for patients and as a field of medicine that cannot evolve. Through policy victories and achievements for patients, he modeled what courageous and effective leadership from the top of HHS can do to drive substantive change and to make government more responsive to the people it has a responsibility to serve. The kidney community, and AAKP, views his bold vision and record as a high mark of performance against which his successors and other federal officials should be judged.” Hickey is a kidney patient and attorney with experience as a senior staff member on Capitol Hill and appointed service under two presidents. He is also Chair of AAKP’s Veteran’s Health Initiative and is involved with veteran service organizations aiding homeless veterans and advancing protections for their earned legal rights and benefits.
The Executive Order was signed on July 10, 2019, at the Ronald Reagan International Trade Center in Washington, D.C., by former President Donald Trump before an audience of patients and other kidney groups including medical societies, researchers, and private industry leaders.
About the American Association of Kidney Patients (AAKP): Since 1969, AAKP has been a patient-led organization driving policy discussions on kidney patient care choice and medical innovation. In 2018, AAKP established the first and largest U.S. kidney voter registration program, KidneyVoters™. Over the past decade, AAKP patient advocates have helped advance lifetime transplant drug coverage for kidney transplant recipients (2020); new job protections for living organ donors under the Family Medical Leave Act (FMLA) via the U.S. Department of Labor (2018); and Congressional legislation allowing HIV-positive organ transplants for HIV-positive patients (2013). Follow AAKP on social media at @kidneypatient on Facebook, @kidneypatients on Twitter, and @kidneypatients on Instagram, and visit www.aakp.org for more information.