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A Message from AAKP President, Paul Conway (July 2018)

[vc_row][vc_column][vc_column_text]Happy summer to every AAKP member and family!


The AAKP team hopes you are enjoying yourselves this summer – AAKP started ours off with a BANG at our 43rd National Patient Meeting in St. Petersburg, Florida where we broke an attendance record, had an overwhelming patient response to our sessions entitled Innovations in Kidney DiseaseCare and Under the U.S. Capitol Dome (with legislative updates from allies from Washington, D.C.) and racked up a series of major partnerships that benefit patients that we will be announcing in the coming months! It was a real pleasure to see so many old friends at the meeting and to meet somany new AAKP members!


In a special and very poignant moment, we also remembered our dear friend and AAKP Board of Directors member and Ambassador, Bill Murray, who we lost on May 26, 2018. AAKP will continue to honor this fine person and brave patient advocate – he was awarded the AAKP National Social Media Award, which was renamed in his honor and memory as the Bill Murray National Patient Voice Award. For those who missed our meeting – select sessions were live streamed and the recordings are now available on our You Tube Channel (American Association of Kidney Patients). You can view photos of the meeting on our Facebook page (@kidneypatient).

AAKP also made important news at our annual in-person AAKP Board of Directors meeting –we have hired our new AAKP Executive Director – Mrs. Diana Clynes! Many of you know Diana personally, as she has been with AAKP for over 13 years and has served with tremendous distinction in implementing the AAKP National Strategic Plan through our Center for Patient Engagement and Advocacy, as well as the Center for Patient Research and Education. I have had the honor of identifying and hiring professional teams throughout my career in the private, government and non- profit sectors and as patient members, you should be very proud of Diana. She embodies the highest standards of national association leadership – a demonstrated ability to listen to and respond to members, unrelenting focus on mission principles and performance metrics, and a level of creativity and accountability that reassures and attracts an expanding network of new donors and sponsors. Perhaps most importantly, especially to kidney patients, she shares the proven ability to aggressively challenge the status quo in dialysis and transplantation in order to both expand patient choice and access to all treatment options. Please join me in congratulating Diana as the new AAKP Executive Director as she leads our professional team of experts. Together, the skills and personal commitment to serve a noble cause makes your AAKP team of Diana Clynes, Executive Director; Erin Kahle, Director of Stakeholder Operations; Valerie Gonzalez, Office Operations; Deborah Pelaez, Marketing and Communications Manager and Tangi Falber, Administrative Lead one of the most respected – and effective – kidney organizations in the United States.


As we move forward with the summer, AAKP needs your help as patient members. AAKP announced the start of our 50th Anniversary Year at our annual meeting in Florida. In addition to the fundraising and events that will mark the coming year, we have set a target of increasing our membership to 250,000 patients and caregivers! We are committed to educating patients on how to stay healthy and increasing their knowledge about ALL types of treatment options including pre-emptive transplant and home dialysis. Please tell your fellow patients, caregivers and friends about AAKP membership is free to patients and family – and they can join today by simply going to https://aakp.org/join/ .


We also need your assistance as we continue to make our voice heard on a highly controversial and sloppy piece of legislation under consideration by the U.S. Congress, the PATIENT DEMONSTRATION ACT (House Resolution H.R. 4143 and Senate Bill S. 2065). This bill denies patients like you a full voice in your own care, interferes with your patient/doctor relationship and forces patients on dialysis into a proposed Federal dialysis demonstration project through a mandatory “opt-in” enrollment – whether you want to participate or not! If you as a patient do not want to be enrolled – you only have 75 days to “opt-out!” AAKP believes that patients should have full freedom in their care decisions and that dialysis companies should work hard to keep YOU as a consumer customer – meaning YOU should be able to “opt-in” if you so choose! The bill is also weak on kidney transplantation issues and essentially puts non- transplant experts – dialysis providers – in the driver’s seat when it comes to future kidney transplants. We think both the process by which this bill was created – through dialysis industry insiders and not patients – as well as the actual language in the bill represents a historic low point in kidney policy. AAKP, as the largest, independent kidney patient organization in America, is joined by our allies at the American Society of Nephrology (ASN), the largest nephrology professional association in the world, united in opposition to the PATIENT DEMONSTRATION ACT.


Our voices are raised in unison against the bill by our other allies and friends with 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 medical experts at nearly every level. Even the American Medical Association has been drawn into this issue and is currently studying the implications of the legislation from a medical professional viewpoint. Sadly, due to the unusually aggressive efforts to pass this bill by one major national dialysis provider and their heavily-funded Political Action Committee (PAC), the usually united kidney community has been torn apart. In addition to the many patient organizations and professional medical groups publicly opposed to the bill, the increasing controversy has led other national kidney organizations usually supportive   of kidney policy issues in the Congress – including the American Kidney Fund (AKF), the Renal Support Network (RSN), the National Kidney Foundation (NKF) and Kidney Care Partners (KCP) – to steer clear and focus their efforts on other issues.


At AAKP – we believe the patient voice has a principled clarity and sense of urgency that rises above the typical push and shove of the Congressional political process or the spending of a particular dialysis industry Political Action Committee (PAC). We also believe that your kidney care – and who determines your future care – should not be a political football. Please join us today in opposing the PATIENT DEMONSTRATION ACT.


You can make your voice heard through AAKP by contacting YOUR ELECTED OFFICIALS through simply https://aakp.org/action-center/ .


Thank you again for your support of AAKP – and for raising your voice to help educate Congress to protect the rights of your fellow patients!


Enjoy your summer, wear sunblock (!) and stay safe.


Paul T. Conway, President of AAKP