Welcome to 2019! As we enter the new year, I want to thank AAKP’s professional staff as well as our loyal patients, caregivers, and professional members for all of their support during a very successful 2018. Also, I want to acknowledge the tremendous support received from our allies and industry partners who embraced the concept of patient engagement and have worked with us to infuse AAKP’s culture further into the renal community.
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Articles
AMERICAN ASSOCIATION OF KIDNEY PATIENTS LEADS NATIONAL “ARE YOU O-K+?” CAMPAIGN
The American Association of Kidney Patients (AAKP), the oldest and largest, fully independent kidney patient organization in the U.S. is pleased to initiate a national educational “Are You O-K+” campaign aimed at increasing awareness of the devastating effects high potassium (known as hyperkalemia) can have on individuals with advanced chronic kidney disease (CKD).
The American Association of Kidney Patients (AAKP), the oldest and largest, fully independent kidney patient organization in the U.S. is pleased to initiate a national educational “Are You O-K+” campaign aimed at increasing awareness of the devastating effects high potassium (known as hyperkalemia) can have on individuals with advanced chronic kidney disease (CKD).
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KIDNEY PATIENTS DEMAND CONGRESS PASS BIPARTISAN CORONAVIRUS BILL ASAP!
The American Association of Kidney Patients (AAKP) deployed a sophisticated, virtual campaign today aimed at pushing the U.S. Congress to act immediately on pending Coronavirus emergency response legislation to protect the health of all citizens; provide urgent assistance to workers and employers; and to inject a strategic stimulus into the national economy.
The American Association of Kidney Patients (AAKP) deployed a sophisticated, virtual campaign today aimed at pushing the U.S. Congress to act immediately on pending Coronavirus emergency response legislation to protect the health of all citizens; provide urgent assistance to workers and employers; and to inject a strategic stimulus into the national economy.
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March 13, 2020 – Joint letter for $3 billion request for NIH over FY 2020, including increase for NIDDK
March 13, 2020
Dear Chairman DeLauro, Chairman Blunt, Representative Cole, and Senator Murray:
On behalf of the undersigned organizations, representing kidney patient advocates and health professionals dedicated to improving patient care, thank you for your steadfast commitment to the National Institutes of Health (NIH) and leadership, including the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). As you draft the Labor, Health and Human Services, Education and Related Agencies appropriations legislation for FY 2021, we respectfully request $3 billion for NIH over FY 2020 levels, including a robust funding increase for NIDDK that is at least proportional. In addition, we urge you to consider a Special Statutory Funding Program for Kidney Research at $150 million per year over 10 years.
A January 2017 Government Accountability Office (GAO) report highlighted the pressing need for investment in kidney research; GAO found that the annual cost for care of the approximately 650,000 patients in the Medicare End-Stage Renal Disease (ESRD) program exceeded the budget allocation for the entire NIH. While NIH’s budget allocation has grown since that time, we still dedicate equivalent of approximately just 5 percent of the annual total cost of care for kidney failure to kidney research at the NIH.
Since the GAO study was published, the number of patients with kidney diseases and associated costs to the taxpayer have also risen. There are now more than 720,000 Americans living with kidney failure, and Medicare spends $35 billion managing kidney failure and $116 billion managing kidney diseases, 15% of all Medicare spending. Greater investment in kidney research should be an urgent priority to deliver better outcomes for patients and bring greater value to the Medicare program.
As the GAO highlighted, Congress made a commitment to treat all Americans with kidney failure through the Medicare End-Stage Renal Disease (ESRD) Program—the only health condition for which Medicare automatically provides coverage regardless of age. This unique commitment underscores the imperative for Congress to foster innovation and discovery in kidney care.
Our organizations believe the Special Statutory Funding Program for Type 1 Diabetes Research provides an ideal model to foster breakthroughs in kidney therapies and cures. This Special Diabetes Program has generated remarkable progress for diabetes patients, including the development of the Artificial Pancreas. We urge your support for an additional $150 million per year over 10 years to establish a similar program NIDDK focused kidney research—a Special Statutory Funding Program for Kidney Research—supplementing regularly appropriated funds that the NIDDK receives.
NIDDK funds the vast majority of federal research in kidney diseases, and despite the immense gap between the federal government’s expenditures on kidney care and its investment in kidney research, NIDDK-funded scientists have produced several major breakthroughs in the past several years that require further investment to stimulate therapeutic advancements. For example, geneticists focused on the kidney have made advances in understanding the genes that cause kidney failure, and other kidney scientists have developed an innovative method to determine if new drugs cause kidney injury before giving them to patients in clinical trials.
NIDDK launched the Kidney Precision Medicine Project that will pinpoint targets for novel therapies—setting the stage for personalized medicine in kidney care. Additional, sustained funding is needed to accelerate these and other novel opportunities to improve the care of patients with kidney disease and bring better value to the Medicare ESRD program.
Thank you again for your leadership, and for your consideration of our request. Should you have any questions or wish to discuss NIDDK or kidney research in more detail, please contact Erika Miller with the American Society of Pediatric Nephrology at (202) 484-1100 or emiller@dc- crd.com or Rachel Meyer with the American Society of Nephrology at (202) 640-4659 or rmeyer@asn-online.org.
Signed,
Alliance for Home Dialysis
American Association of Kidney Patients
American Kidney Fund
American Nephrology Nurses Association
American Society of Nephrology
American Society of Pediatric Nephrology
American Society of Transplantation
American Society of Transplant Surgeons
Atlantic Dialysis Management Services
Children’s Organ Transplant Association
DaVita
Dialysis Patient Citizens
Fresenius Medical Care
Halpin Foundation
Home Dialyzors United
IGA Nephropathy Foundation of America
Kidney Care Council
Kidney Care Partners
National Kidney Foundation
NephCure Kidney International
Nephrology Nurses Certification Commission
Northwest Kidney Centers
Oxalosis and Hyperoxaluria Foundation
PKD Foundation
Rare Disease Kidney Foundation
Renal Pathology Society
Renal Physicians Association
Renal Support Network
Rogosin Institute
Satellite Healthcare
Transplant Recipients International Organization
Vasculitis Foundation
Veterans Transplantation Association
CORONAVIRUS EXPANDS KIDNEY PATIENT VIRTUAL ENGAGEMENT WITH WHITE HOUSE AND CONGRESS
The American Association of Kidney Patients (AAKP), the nation’s largest fully independent kidney patient organization, today announced that given the serious threat posed by the Coronavirus to the kidney patient community, they are encouraging all patients and their families to avoid unnecessary travel, including all planned travel to Washington, D.C. during National Kidney Month in March and for the immediate future. Historically, hundreds of kidney patients and their families travel to the nation’s capital to discuss policies related to patient care choice and medical innovation with White House and Congressional officials.
The American Association of Kidney Patients (AAKP), the nation’s largest fully independent kidney patient organization, today announced that given the serious threat posed by the Coronavirus to the kidney patient community, they are encouraging all patients and their families to avoid unnecessary travel, including all planned travel to Washington, D.C. during National Kidney Month in March and for the immediate future.
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THE AMERICAN ASSOCIATION OF KIDNEY PATIENTS ENGAGES AMERICA AND CONGRESS DURING NATIONAL KIDNEY MONTH
March is the month when Americans and the U.S. Congress are asked to focus on kidney disease, a condition that impacts 40 million people, with an additional 700,000 suffering from kidney failure. The American Association of Kidney Patients (AAKP) is raising its voice against a silent killer throughout March. Founded in 1969, AAKP is the oldest and largest, fully independent patient-led, kidney patient organization in the U.S. This March marks the first National Kidney Month in AAKP’s Decade of the Kidney™ Initiative.
March is the month when Americans and the U.S. Congress are asked to focus on kidney disease, a condition that impacts 40 million people, with an additional 700,000 suffering from kidney failure. The American Association of Kidney Patients (AAKP) is raising its voice against a silent killer throughout March. Founded in 1969, AAKP is the oldest and largest, fully independent patient-led, kidney patient organization in the U.S. This March marks the first National Kidney Month in AAKP’s Decade of...
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Book Review: Howl Learns About Kidneys and Dialysis
Book Review by James Myers, AAKP BOD and Ambassador
Howl Learns About Kidneys and Dialysis
The Organ Donation Series
Book 3
by Brenda E. Cortez, Illustrated by Dindo Contento
ISBN: 978-0999360149
Published by Nico 11 Publishing & Design
www.nico11publishing.com
This book is part of an ongoing series of books where young Howl the Owl (Help Others With Love) learns about kidney dialysis. A book for children, Howl visits the dialysis lab with his Grandpa Bob. In simple language, with brilliant illustrations, Howl learns what it is like to have Chronic Kidney Disease, to be on the Kidney Wait List and receiving a kidney transplant.
Subtle discussions include weighing in (dry weight), fistulas, dialysis machine operations, blood pressure checks, even the post-dialysis fade. The nurse and the technician explain everything to Howl in digestible terms for a young child. Even the search for a kidney donor and social media are explained in simple, understandable terms.
These topics are positively written with joy and the love a child will readily accept. That is the brilliance of this book! Concepts are communicated with great affection for children, a difficult task at best. Even Organ/Kidney Advocacy is touched on in this book! It is clearly designed for a parent/caretaker to read to a child without raising anxiety, but to encourage acceptance. Even Grandpa Bob's Kidney Transplant and Donor Remembrance Ceremonies are discussed with grace. The illustrations in this book are among the best I have ever seen in a children's book.
There is even a glossary in the book for clarification purposes.
The coolest thing about the book is that it is a true story, with photos of all the real characters and the author involved in the story.
This is an incredible children's book! A great explanation of all kidney issues in a short, beautiful book! 5 stars! I happily recommend this book and remember that part of proceeds from the book sales support Donate Life America. Don't hesitate to buy this book!
*The opinions expressed above are those of the reviewer not necessarily AAKP.
February 14, 2020 – Dental Access Letter to HHS Secretary Azar
We applaud your efforts to deliver on President Trump’s Advancing American Kidney Health Initiative. You have stated that the U.S. Department of Health and Human Services (HHS) will reform regulations so that fewer Americans suffer kidney failure, more options are available for dialysis patients, and more organs are available for transplant.
We applaud your efforts to deliver on President Trump’s Advancing American Kidney Health Initiative. You have stated that the U.S. Department of Health and Human Services (HHS) will reform regulations so that fewer Americans suffer kidney failure, more options are available for dialysis patients, and more organs are available for transplant.
WALK FOR KIDNEY DISEASE AWARENESS
Tampa, FL – The American Association of Kidney Patients (AAKP), the oldest and largest fully independent kidney patient organization in the U.S., which is also headquartered locally in Tampa, FL, will hold a Fun Walk on Saturday, December 7, 2019 at Lowry Park in Tampa. Join in to make a difference for kidney patients worldwide!
Tampa, FL – The American Association of Kidney Patients (AAKP), the oldest and largest fully independent kidney patient organization in the U.S., which is also headquartered locally in Tampa, FL, will hold a Fun Walk on Saturday, December 7, 2019 at Lowry Park in Tampa. Join in to make a difference for kidney patients worldwide!
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AAKP PREVIEWS DECADE OF THE KIDNEY AT 50 YEAR ANNIVERSARY MEETING; LEADERS IN KIDNEY MEDICINE AND ADVOCACY RECEIVE NATIONAL AWARDS
Participants were invited to offer recommendations for the AAKP initiated Decade of the Kidney™, a ten-year national and international effort starting in 2020 designed to intensify the focus of policy-makers, researchers and the private sector on a broad, patient-focused agenda targeting kidney diseases, new care innovations and an aggressive expansion of patient care choice. AAKP unveiled Decade of the Kidney™ at its June 20, 2019 National Policy Summit in Washington, D.C. Interest in Decade of the Kidney™ has accelerated since both President Donald Trump’s signing of the Executive Order on Advancing American Kidney Health and AAKP’s accompanying joint statement of support for the Trump Administration’s kidney actions by AAKP leaders, President Richard Knight and Chair of Policy and Global Affairs, Paul T. Conway.
Participants were invited to offer recommendations for the AAKP initiated Decade of the Kidney™, a ten-year national and international effort starting in 2020 designed to intensify the focus of policy-makers, researchers and the private sector on a broad, patient-focused agenda targeting kidney diseases, new care innovations and an aggressive expansion of patient care choice. AAKP unveiled Decade of the Kidney™ at its June 20, 2019 National Policy Summit in Washington, D.C.
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TOP USA KIDNEY PATIENT MEETING LANDS ON CAPITOL HILL
Richard Knight, AAKP President and a kidney transplant recipient, stated “If you are a kidney patient or the loved one of a kidney patient anywhere; this event is a unique opportunity to listen, meet and talk to some of the top experts in America about kidney disease prevention, transplantation, and dialysis care. It’s also an opportunity to be part of history as AAKP will highlight the goals of the recently announced Executive Order on Advancing American Kidney Health and share how patients can and should play a role in the long-term success of this milestone initiative.”
Richard Knight, AAKP President and a kidney transplant recipient, stated “If you are a kidney patient or the loved one of a kidney patient anywhere; this event is a unique opportunity to listen, meet and talk to some of the top experts in America about kidney disease prevention, transplantation, and dialysis care. It’s also an opportunity to be part of history as AAKP will highlight the goals of the recently announced Executive Order on Advancing American Kidney Health and share how patients...
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