I am a Kidney Voter. Are you?

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By Dale Rogers, AAKP Ambassador

 

It was thirty-nine years ago that I noticed politics for the first time. I got home from school on March 30, turned on the T.V. and was witness to the chaotic aftermath of the failed assassination attempt on President Ronald Reagan. It was on every channel, and even at the age of 12 it bothered me a great deal, and I vowed someday to become involved in our political system. That was also the year that my life was forever changed by type 1 juvenile diabetes, which would eventually lead to chronic kidney disease (CKD) in my life. 

Fast forward to June 23, 2016. That was the day I received my second kidney transplant. During my stay at the University of Washington, I expressed my desire to help other CKD patients deal with the disease and all its nuances. My transplant nephrologist was very supportive of this desire.  In 2017, during one of my many check-ups, he suggested that I attend a transplant summit in Washington, D.C. for transplant patients, put on by the American Society of Transplantation (AST). 

It was at this summit that I began to feel the need for political advocacy, and my childhood vow to become an active voter blossomed into full fruition.  I had registered to vote when I was 18, but during the summit experienced a growing conviction that my vote and the votes of others in my position really mattered. I discovered the importance of being a KIDNEY VOTER!!! This is when I joined the American Association of Kidney Patients (AAKP) team.

There were more than 250 transplant recipients at this summit. I was not the only one. For the first time, I was able to share my experiences with people that were going through the same things. We were all there to learn and share. One of the highlights was a visit from Bill Applegate with ASTS and representatives from Capitol Hill, including; U.S. Rep. Jerry Nadler, U.S. Rep. Jaime Herrera Beutler, and U.S. Rep. Paul Ruiz. 

They told us they wanted to hear our stories, and they encouraged us to vote for policy changes that could make significant differences for each one of us suffering from CKD. Each one of us, YOU and I can make a difference with our stories and our votes. Thirty-seven million people in the United States suffer from CKD. 1 in 3 people are closely connected to someone with CKD. That is a large number. We can have an impact if we do our homework and we need to act.  

CKD is becoming an epidemic. We, collectively, have the power to make a difference and change the status quo of kidney disease care - please consider becoming a kidney voter. The days of thinking you are the only one voting for kidney disease reform is over. Thirty-seven million kidney voters that can stand with you. With this number growing daily, it is time for action. I am a KIDNEY VOTER, are YOU?

 

 

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GRANT CYCLE OPEN FOR INNOVATIONS IN KIDNEY PATIENT SAFETY AAKP CONTINUES NATIONAL EFFORTS IN PATIENT SAFETY

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TAMPA, FL – The American Association of Kidney Patients (AAKP), the largest and oldest fully independent kidney patient organization in America, announced the opening of the 2020 grant cycle for the Jenny Kitsen Patient Safety Award. To apply for the award online, visit https://aakp.
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2020 AND KIDNEY VOTERS – AAKP MEMBERS FLEX GROWING MUSCLE

Sidhvi Nekkanti
By Paul T. Conway, AAKP Board of Director, Chair, Policy & Global Affairs It has been nearly two years since AAKP began experimenting with voter registration efforts among our patient base and a wide community of patient families, friends and allied medical professionals, including social workers, medical professionals and researchers.
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AAKP PREVIEWS DECADE OF THE KIDNEY AT 50 YEAR ANNIVERSARY MEETING LEADERS IN KIDNEY MEDICINE AND ADVOCACY RECEIVE NATIONAL AWARDS

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By Diana Clynes, Executive Director

 

Washington, D.C. – The American Association of Kidney Patients (AAKP) celebrated its 50 Year Anniversary as the oldest and largest fully independent kidney patient organization in the USA with their highest attended National Patient Meeting and awards program in over ten years.  The meeting, entitled Driving Innovation & Changing the Status Quo, was held in Washington D.C., September 6-8, 2019. Thousands of patients and medical professionals engaged via live streaming and meeting space hit capacity as hundreds of attendees engaged in-person. Over 30 pharmaceutical, diagnostic and device companies and non-profits exhibited.  

 

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.

 

“AAKP’s national strategy to improve patient outcomes, drive innovation and expand patient choice continues to produce solid results due to our non-partisan efforts to engage patients directly with key allies and policymakers at every level.  AAKP national awards recognize those who share our principles and long-term mission to defend patient choice and to genuinely respect the intelligence and dignity of all kidney patient consumers,” stated Richard Knight, AAKP President, former hemodialysis patient and current kidney transplant recipient.  Knight is also a patient engagement leader for the NIH/NIDDK Kidney Precision Medicine Project.

 

AAKP conference speakers included senior federal officials from the U.S. Department of Defense, the U.S. Department of Labor, and the U.S. Department of Health and Human Services along with experts from the National Institutes of Health, the Centers for Medicare and Medicaid Services, and the Centers for Disease Control and Prevention. Other speakers included key kidney stakeholders including the American Society of Nephrology, the Renal Physicians Associations, the American Society of Transplant Surgeons and the Patient Centered Outcomes Research Institute.  AAKP’s national strategic communications partner, Briar Patch Media, under the leadership of proprietor Jonathan St. John, filmed sessions to be posted to the AAKP YouTube Channel in September.

 

AAKP national awards were presented for extraordinary leadership and excellence in the fight against kidney diseases.  Awards are inspired by AAKP founders such as Shep Glazer, a kidney patient and former AAKP Board Member who dialyzed in front of the U.S. Congress 50 years ago to show that dialysis was a life-saving bridge to kidney transplantation and a return to the workforce.  His brave act helped facilitate the 1972 Congressional passage, and subsequent signing by former President Richard M. Nixon, of legislation that created the modern Medicare ESRD Coverage Program. 

 

AAKP President’s Award

 

Paul T. Conway, AAKP Chair, Policy & Global Affairs and Co-Chair, AAKP/GWU School of Medicine & Health Sciences Inaugural Global Summit

 

The Peter Lundin, MD Award - awarded for a lifetime of devoted service to patients:

 

Dominic Raj, MD, DM, FASN, Professor of Medicine and of Epidemiology and Biostatistics and of Biochemistry and Molecular Biology, and Director of the Division of Renal Disease and Hypertension, George Washington University School of Medicine & Health Sciences; Co-Chair, AAKP/GWU School of Medicine & Health Sciences Inaugural Global Summit

 

AAKP National Public Service Award

 

Paul Kimmel, MD, MACP, U.S. Civil Service; Program Director; Division of Kidney, Urological, and Hematologic Diseases, National Institutes of Health; Professor, Division of Renal Diseases and Hypertension, George Washington University School of Medicine & Health Sciences

 

AAKP National Journalism Award

 

Rajnish Mehrota, MD, FASN, Editor-in-Chief, Clinical Journal of the American Society of Nephrology and architect of the new CJASN Patient Voice editorial program

 

The Samuel J. Orenstein Award – awarded for extraordinary service:

 

Janice Lea, MD, MSc, FASN, Emory University, a Principal Investigator for PCORI Grants and AAKP National Board of Director

 

AAKP National Social Media Education and Advocacy Award

 

Individual Category: Jennifer Jones, USMC, veteran combat videographer, Global War on Terror (GWOT) Iraq and AAKP Ambassador

 

Organization Category: Urban Kidney Alliance, a Baltimore-based non-profit, focused on advocating, and empowering individuals in urban cities at-risk for chronic kidney disease (CKD) and other conditions. Award accepted by Founder, Steven Belcher, RN

 

AAKP National Patient Engagement and Advocacy: The Bill Murray Patient Voice Award

 

Individual Category: Mr. Bob Abbott of Little Rock, Arkansas, retired entrepreneur and lifetime patient advocate

 

Organization Category: Center for Dialysis Innovations, a collaboration between UW Medicine and the University of Washington Dept. of Bioengineering. Award accepted by Glenda Roberts, Director of External Relations & Patient Engagement, Kidney Research Institute, transplant recipient and AAKP Ambassador

 

Public Servant Category: Mr. Kyle Hill, staff, U.S. Congress Kidney Caucus and Legislative Director for Representative Suzan DelBene.

 

The Dominick Gentile, MD Memorial Award - awarded for ESRD Network Program Excellence:

 

End Stage Renal Disease (ESRD) National Coordinating Council. Award accepted by Jerome Bailey, Associate Director of Communications for ESRD NCC at Health Services Advisory Group, Inc.

 

AAKP National Kidney Patient Support Group of the Year

 

Kerrville Texas Transplant Support Group, Award accepted by Kent Bressler, Co-founder of the Kerrville Support Group, pre-emptive transplant recipient, AAKP Board of Director, and AAKP Ambassador

 

The AAKP thanks its 2019 National Patient Meeting sponsors - Amgen, Inc.; Horizon Therapeutics; Mallinckrodt Pharmaceuticals; CareDx; NxStage; Akebia; Baxter Healthcare; Bayer; Dialysis Clinic, Inc.; Retrophin; Reata; Hansa Biopharma; Nestle Health Science; Advicenne; VidaFuel; Somatus and OPKO Renal and its over 30 exhibit hall vendors. 

 

For highlights of this year’s meeting visit www.aakp.org/programs-and-events/national-patient-meeting or search #KidneyPatients19. Continue to visit www.aakp.org and follow us on social media (Facebook @kidneypatient or Twitter @kidneypatients) for information on AAKP National Patient Meeting 2020.

 

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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.

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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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Qualifying for Social Security Benefits with Kidney Disease

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Have you been diagnosed with kidney disease? If so, you might be eligible for Social Security disability benefits. The Social Security Administration (SSA) offers monthly financial aid for people who are unable to work. Kidney disease does not automatically qualify for benefits, but thousands of people who are out of work for a year or more due to kidney disease may be eligible for assistance.
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Patient Profile: Gabriella Nelson & Angela Clayton

Sidhvi Nekkanti
By Deborah Pelaez, AAKP Marketing and Communications Manager Gabriella Nelson is a healthy 3-year-old, happy and full of life. If you met her, you would never know by looking at her all that she has been through. You would never guess this beautiful young girl has a kidney transplant! Gabriella was diagnosed with Focal Segmental Glomerulosclerosis (FSGS) at 17 months old. On December 1, 2017, when Gabriella was 16 months old, her mother, Angela Clayton, took Gabriella to the doctor because she ...
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AAKP Policy Focus: Top Legislative Issues Impacting Your Life

Sidhvi Nekkanti

By Kent Bressler, AAKP Board of Director

AAKP Policy Focus: Top Legislative Issues Impacting Your Life By Kent Bressler, AAKP Board of Director

On July 10, President Trump signed an executive order (https://www. whitehouse.gov/presidential-actions/ executive-order-advancing-americankidney-health/) that is seen as the first meaningful progress in elevating the national profile of kidney disease and shining a spotlight on the millions of Americans affected by this chronic condition.

 The Executive Order has four goals: 1) Prevention and early detection of kidney disease, 2) Increasing access to affordable options for those in kidney failure, 3) New incentivized Medicare payment system that encourages and reimburses in home dialysis vs. incenter dialysis, and 4) Improvement of the transplantation process by reducing barriers to donation.

My life has centered around CKD and ESRD for over four decades, and I wouldn’t be alive today if my brother Kip hadn’t donated one of his kidneys to save my life 32 years ago. The bulk of my adult life has been spent working with people who have kidney disease. Some of them faced with or on dialysis and those who are actively seeking a kidney transplant. My personal philosophy has always been that preemptive transplant is the best option for people with progressive kidney disease. Preparing for transplant is a much better option than preparing for dialysis. Preemptive philosophy has not been the prevailing and accepted attitude in the kidney community however. We know that neither modality is a cure to kidney disease, however transplant affords the individual a better opportunity for a richer quality of life, improved health outcomes and increased self-sufficiency to pursue the individual’s aspirations.

Thankfully, my brother and I had adequate insurance covering the bulk of transplant expenses back in 1987. We each used our paid sick leave from our employers, as FMLA was not available or offered at that time.

In April of 2018, the U.S. Department of Labor issued a formal opinion letter (https://www.dol.gov/whd/opinion/ FMLA/2018/2018_08_28_2A_FMLA. pdf) stating that the Family Medical Leave Act (FMLA) coverage does extend to living organ donors and that eligible employees are entitled to unpaid and jobprotected leave because related care procedures such as overnight and in-patient and follow-up care qualify. The clarification by former Dept. of Labor Secretary Acosta is a massive victory for kidney patients due to a lack of certainty that has surrounded the applicability of FMLA protections to living organ donors. This uncertainty has existed among employers, employees who desire to use time off to donate an organ, and among kidney patients who are often offered the gift of life from their family, friends and workplace colleagues. Under FMLA, eligible employees may take up to 12 work weeks of leave in a 12-month period for, among other things, a serious health condition that renders the employee unable to perform the functions of his or her job. AAKP, alongside kidney community allies including the American Society of Nephrology (ASN), the American Society of Transplant Surgeons (ASTS), the American Society of Transplantation (AST), the Renal Physicians Association (RPA) and multiple other kidney related organizations have long favored the clarification based on the original and very specific FMLA Congressional co-sponsor discussions related to organ donation. Subsequent to the Dept. of Labor’s opinion letter, the Living Donor Protect Act (LDPA) of 2019, was introduced by Congressman Jerrold Nadler (D.NY) and Congresswoman Jaime Herrera Beutler (R-WA) and Senators Kirsten Gillibrand (D-NY) and Senator Tom Cotton (R-AR) urging Congress to act.

$114 billion roughly 1/5 of the Medicare budget is spent on kidney disease. The cost of dialysis is estimated at $89,000/year/patient. With patients 10 encouraged to use home hemodialysis (HHD) or peritoneal dialysis (PD), but still can opt for in-center hemodialysis. The average list price for transplant according to vivo.com is $143,500. In addition, immunosuppressive medications that are taken for a lifetime, post-transplant cost around $20,000 per year. These numbers vary widely and negotiation of prices by insurance and other entities make it hard to put a firm dollar amount on the real cost of transplantation. Consequently, it is not difficult to surmise that an organ transplant offers much more bang for the taxpayer buck. 80% of transplant costs are covered by Medicare. In addition, immunosuppressive medications, that are taken for the lifetime of any transplanted organ, are only covered by Medicare for three years. When the three-year limit expires, transplant recipients are responsible for paying the high cost for the immunosuppressive medication or risk losing the organ by rejection.

This has been a catastrophic event for many recipients, even given time to prepare, many can’t afford to pay for the medication for the life of the transplanted organ. Some have resorted to taking their medication sporadically or drop it all together. Regardless, without tight control and daily coverage most recipients lose their transplanted kidney to rejection and must return to dialysis – simply for not being able to afford the medication.

Attempts to address this issue center around the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act dating back to 2011. The literature at the time indicates that it had wide bipartisan congressional support, but it NEVER passed. There have been multiple reasons given for this collapse but suffice it to say it has laid dormant at the expense of transplant patients since then. There is still hope since the signing of the President’s Executive Order that new legislative initiatives are being floated to revitalize the Immunosuppressive Drug Coverage Bill to cover immunosuppressive medication for the life of the transplanted organ.

Forty years have passed since my diagnosis of (FSGS) and little significant advancement in research and care alternatives have occurred. That’s not to say improvements haven’t been made, but essentially, treatments are the same. Medications have advanced and within the past two years more funds have been allocated towards kidney research. Research funding is reflected below as reported by ASN from NIH data.

HIV/AIDS $3,064/pt./yr.

Cancer $568/pt./yr.

Heart $61/pt./yr.

KIDNEY $29/pt./yr.

A silent killer, affecting 37 million people or 1/5 of the population, and the ninth leading cause of death - resulting in 193,000 transplants but leaves roughly 468,000 on dialysis and over 100,000 on the transplant waiting list cries out for formal action at all levels. Most disconcerting is the fact that 13 people per day die waiting for a transplant. This Executive Order Advancing American Kidney Health is long overdue but all those within the kidney community are thankful to the current Administration that it has finally arrived. The kidney community and the country as a whole must work to bring change for all kidney patients. This Executive Order and the advances and focus made by the HHS, is progress at its best.

 In 1982, Kent was diagnosed with focal segmental glomerulosclerosis (FSGS), a disease that causes scarring in the glomerulus of the kidney and is notorious for additional health problems including large amounts of protein in the urine, loss of protein in the blood, high cholesterol, and high blood pressure. In 1987, Kent received a kidney from his brother, Kip. For the past 30 years, Kent has been on immunosuppressive drugs that are essential in guarding against rejection of the transplanted kidney but also can have harmful, longterm side effects. Kent has participated in chronic kidney disease research reviews for the U.S. Department of Defense, as a mentor for potential transplant recipients, on the steering committee for Nephcure International, and is currently doing peer review on research being conducted by PCORI (Patient Centered Outcomes Research Institute). Kent is a registered nurse. He enjoys being active in his church. Kent has two daughters and four grandchildren.

This article was originally published in aakpRENALIFE, September 2019.

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