By Edward V. Hickey III, AAKP Board of Director, Secretary and Chair of Veterans Health Initiative,
and Paul T. Conway, AAKP Board of Director, Chair, Policy & Global Affairs
It is not every day that you, as a patient advocate, are asked to make and engage in a 10 year commitment – but today is the day!
Welcome to The Decade of the Kidney™ – an era that has already begun and during which patients and the kidney community will witness profound transformations in kidney care – the least of which will be the evolution away from the tired status quo of brick and mortar dialysis as we know it and toward a future defined by patient choice, targeted therapies that inhibit kidney disease and prevent kidney failure, greater access to donated organs and new devices, including implantable artificial kidneys, that allow patients to continue the pursuit of their aspirations with minimal interruption.
AAKP has a distinguished history of impacting both national policy and legislation and the lives and health outcomes of kidney patients. Working together as patient advocates and as informed patients, our Founders helped create the modern dialysis program back in 1972 after years of executing an advocacy plan that combined strategy, thoughtful relationship building and a very deliberate effort to build and cultivate allies within the private sector, among scientific and academic researchers and across medical specialty organizations such as the American Society of Nephrology and among renal physicians.
In the most recent era, and especially over the course of the past five years, AAKP recommitted itself to this original formula and strategy to gain new national relevance, exponentially greater engagement and growth among kidney patients and their families and far greater influence to push for greater patient choice and more innovative care options for patients. Working together, AAKP and its members and allies have achieved great impacts in the past several years – including legislation that allows HIV to HIV organ transplants, lower prescription drug costs and, most recently, AAKP contributed to the newly announced White House and U.S. Department of Health and Human Services initiative to fight kidney diseases.
So, in light of our history and most recent efforts – where does AAKP go from here and what will your role be as an AAKP member and kidney patient?
The answer rests in The Decade of the Kidney™ – a transformative announcement AAKP made in June of 2019 at our second National Policy Summit in Washington, D.C. designed to unite the community around a central thought – or a “big idea.” Over the course of two days, AAKP listened to substantive and exciting Summit presentations on innovations in drugs, diagnostics and devices aimed at improving the lives of our fellow patients. And, we heard from top Federal officials in the Executive Branch in charge of critical payment and regulatory decisions that will determine our access to new life-saving treatments. On the second day of the Summit, during a roundtable with patients, allied kidney organizations and our strong allies, AAKP listened closely to the diverse views represented across the kidney community on many key pending issues in front of the Federal government, including specific decisions under review by the Centers for 14 Medicare and Medicaid (CMS), the U.S. Food and Drug Administration (FDA), the National Institutes of Health (NIH) and other agencies. We also listened closely to our allies on key legislation in front of Congress as the Fall of 2019 approaches, including bills related to immunosuppressive drugs, greater organ donor protections and transparency in the administration of organ procurement. And, we shared the strong optimism and excitement in the room about the pending White House and Department of Health and Human Services announcement made on July 10, 2019, on a new national kidney policy that centers on patient concerns first, not the concerns of non-patient special interests.
While each of these issues is of tremendous importance and has significant immediate implications for patient and the kidney community – AAKP believes that a far larger strategic context and message is needed to unite a broader base of Americans and far more communities behind ongoing efforts to fight kidney diseases and give hope to the nearly 40 million Americans who suffer from kidney diseases. We believe that The Decade of the Kidney™ does precisely that – it helps explain to the general public and national policy leaders that each of singular efforts and innovations underway in kidney disease are in fact part of a far larger national effort to save and improve lives for those who suffer from kidney disease – and those yet to be diagnosed. AAKP also believes that by uniting all sectors of the kidney community under one strategic theme – it will be far easier to secure additional media and grassroots support, national research funding and public understanding for kidney disease.
There is substantial national precedent and support for efforts such as The Decade of the Kidney™ – in the past ten years, former Vice President Joe Biden helped President Barack Obama launch a similar effort in 2016– entitled the National Cancer Moonshot. This effort was designed to capture the wider public imagination on the capacity of America to fight and win the battle against cancer in our lifetime – and to prioritize cancer funding and research on the national policy agenda. Similarly, in the early 1990’s, former Massachusetts Congressman and World War II veteran Silvio Conte worked closely with then President George H.W. Bush to announce the Decade of the Brain – a national effort that spawned Congressional and Executive Branch funding and research related to understanding how the human brain is wired, how to maintain optimum health and how to fight diseases like Alzheimer’s. As a young USMC veteran and chief of staff to Congressman Silvio Conte, future AAKP Secretary Edward V. Hickey, III had a seat at the table as this national policy effort was formulated and implemented across the Federal government and the private and non-profit sectors. AAKP will be leveraging that expertise, along with the available expertise from our network of allies on the media, among a key group of bi-partisan national leaders and other influential Americans to build greater support for The Decade of the Kidney™
So – what is your role in this effort? That is fairly simple:
1. Stay engaged with AAKP as a member – follow us on social media, engage with us in our webinars and attend our events online and in person as you are able to.
2. Get more active as advocate and sign up at AAKP’s Action Center Contact your Congressional officials and tell them your support for greater care choice and more innovative care options that allow you the freedom to pursue your aspirations – including to work, own a home and to have a family.
3. Stay tuned – AAKP will be providing you with resources including graphics and social media links that will help you become an even more effective participant and enthusiastic spokesperson for the The Decade of the Kidney™
We look forward channeling your energy and enthusiasm in the The Decade of the Kidney™ – after all, the best way to ensure victory in the larger battle against kidney disease is to always think: “If not us, who? If not now, when?”
Mr. Paul T. Conway serves as Chair of Policy and Global Affairs; Immediate Past President of AAKP. Mr. Conway has managed kidney disease for thirty-seven years, including more than two years on dialysis and, for over twenty years, as a kidney transplant recipient. He is actively involved in multiple patient-centered national health care transformation initiatives aimed at increasing the inclusion of patient preference information (PPI) and patient reported outcome (PRO) data across Federally-administered and funded programs and evaluation processes.
Mr. Edward V. Hickey, III, serves as Secretary and Chair of the AAKP Veterans Health Initiative. He served as an Infantry officer in the U.S.M.C. as a Lieutenant with postings in Quantico and Camp Pendleton. His distinguished public service career includes posts on Capitol Hill, Department of Commerce and Senior Advisor for Homeland Security for the Director of the Office of Personnel Management under President George W. Bush. Currently, Mr. Hickey is an attorney with O’Melveny & Myers, an international law firm.
This article was originally published in aakpRENALIFE, September 2019.