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A Message from AAKP President, Paul Conway (Posted May 2018)

Happy spring to our AAKP Members and Allies!


We are well on our way to our National Patient Meeting in St. Petersburg, FL. By the time many of you read this message, some of you will be reading it at the annual conference! As the nation’s oldest and largest fully-independent and patient-lead organization, it is only natural that AAKP hosts the largest kidney patient meeting in America! AAKP is entering into our 50th Anniversary Year – and the kickoff of that celebration begins at the 2018 Annual Meeting!


For those who miss this year’s Meeting, or who are not able to watch the livestream, your absence will be felt by your fellow patients. However – due to the tremendous efforts of our staff and very generous meeting sponsors – you will be able to watch recorded video of selected sessions in the weeks ahead. Look-out for notices online, on our social media pages and in upcoming issues of aakpRENALIFE.


AAKP has been building our strength, influence, Ambassador teams and communication capacities over the past several years. As a part of our ongoing national engagement and advocacy strategy, we work hard to bring your concerns and experiences to decisionmakers who benefit from your independent voice. When your fellow AAKP patients meet with professionals at The White House, on Capitol Hill and even at the United Nations (we have been to all of these in the past 30 days!), decision-makers immediately recognize the AAKP viewpoint as unique and independent. Since 1969, this has been our heritage and our legacy – and we will hold true to our values and purpose.


Because we are united as patients, with a patient-majority national Board of Directors and leadership team, AAKP is never mistaken as a special interest group run by detached paid professionals with no link to your patient experience. Your AAKP Board and leadership team have experienced the frustration and pain of coping with a chronic illness, have had the surgeries and the scars to prove it, have lived on dialysis, have experienced transplants – and have seen both the cloudy days of kidney disease and the blessed sunny days. AAKP stays true to our roots – meaning real grassroots education and advocacy. We are never confused for an “astroturf” organization founded by special interests. We choose our allies wisely – and our allies are among the finest U.S. civil servants, like-minded association policy and Congressional legislative experts and experienced medical professionals in America.


So what is it we are trying to accomplish through our education, advocacy efforts and alliances? What is the vision the AAKP mission has been placed in service to? We have listened carefully over the years to your voices at our Annual Meetings, in patient surveys, to your most recent comments on social media and to your calls to our AAKP national headquarters. In a very succinct way – this is the vision we share and work toward together:


For Kidney Patients: A care system built upon the simple truth that humans have an inherent desire to live, to aspire and to prevail.


For Kidney Disease: A true, patient-centered treatment system defined by: early disease detection and intervention to slow progression; early education on ALL choices of treatment and work-compatible options to include pre-emptive transplantation, home hemo and peritoneal dialysis; and full access to high quality in-center dialysis care with teams that encourage transplantation among those eligible.


For America: The fundamental rejection of the decades-old, passive and costly dialysis care status quo – and a commitment to support research and innovation aimed at reducing kidney disease occurrence while increasing the availability of safe, new treatments that allow greater freedom, are less burdensome and produce better health outcomes.


As AAKP works on education and policy issues that support this vision, we want you to know the principles upon which the AAKP Board of Directors and professional staff operate to achieve our national advocacy and policy agenda. They are honest and straight-forward:


  1. AAKP elevates the patient voice in national issues and across drug, diagnostic and device development.
  2. AAKP protects the unique relationship between patients and their doctors.
  3. AAKP educates patients and preserves their access to choices as informed consumers of healthcare.
  4. AAKP maintains our full independence in all national policy and decisions.
  5. AAKP honors the principle of “no surprises” among trusted allies and Federal and state government officials.


By sticking to our principles, we stay true to our mission and make measurable progress in achieving the vision. We avoid making short-term decisions that risk AAKP’s ability to shape care choices and future innovations for years to come. As the leadership of AAKP, we understand that on our watch, we must maintain the reach and credibility of this organization for generations to come.


In just the past year, AAKP has assumed national leadership roles on the leading-edge of kidney treatment – this includes the groundbreaking Kidney Precision Medicine Program (KPMP) at the National Institutes of Health (NIH) under the leadership of Dr. Robert Star as well as KidneyX – a special joint initiative of the U.S. Department of Health and Human Services (HHS) and the American Society of Nephrology(ASN), KidneyX will jump-start new kidney treatments and devices using both private sector funding and Federal taxpayer funds. We have also greatly increased our focus on Veterans health outcomes through the AAKP Veterans Health Initiative under the leadership of fellow Board Member and U.S. Marine Veteran Edward V. Hickey, III.


And, we have taken a firm stand against the well-intentioned yet highly controversial Patient Demonstration Act. This poorly written legislation, presently before the U.S. Congress, was originally sold as a bill that reflected a consensus among nearly all kidney experts and patients. In reality, the bill has no consensus. It is written in a way that limits patient access to transplantation while simultaneously giving patients only 75 days to “opt-out” of a proposed demonstration program or be automatically enrolled!

This program, in many cases, would disrupt patient access to the nephrologists and experts they have already come to trust for care. AAKP and our allies had proposed edits to this bill in an effort to avoid these negative consequences. Regrettably, the voices of patients like you and our allied healthcare allies were ignored. Today, we are united against the controversial Patient Demonstration Act along with our highly-credible allies at the American Society of Nephrology (ASN), the American Society of Transplant Surgeons (ASTS), the American Society of Transplantation (AST), Dialysis Clinic, Inc. (DCI), the Rogosin Institute, Northwest Kidney Centers, the Washington State Medical Society, nearly all other non-profit dialysis providers in America – and leaders at nearly every level. The Patient Demonstration Act bill has become incredibly divisive. Sadly, the bill has split what is normally a united kidney community. In addition to the many groups and patients opposed to the bill, other national kidney organizations such as the American Kidney Fund (AKF), the Renal Support Network (RSN), and Kidney Care Partners (KCP) chose to avoid the by citing their need to focus resources on other issues.


As AAKP members, you have done a superb job contacting your representatives and fellow patients by phone and online to fight The Patient Demonstration Act and we appreciate it. We too prefer to focus our time and energy on positive efforts aimed at improving your care and impacting the future; however – when your care is threatened – we will inform you and use every relationship and tool at our disposal to make your opinion known among key decision-makers.


Please continue to follow us on social media and visit www.aakp.org for the latest information. Stay tuned for more announcements on how YOU can get involved with AAKP at the national, state and local level as we expand our Ambassador Program and our grassroots impact online and in your community! Have a safe spring – and enjoy each day.


*This message is from aakpRENALIFE magazine issue May/June 2018.  Click here to view the magazine.