2019, The Year of Kidney Policy

The July launch of the “Advancing American Kidney Health” initiative (AAKH) was a watershed moment when the Federal government decided to shake up the treatment landscape to move from treating kidney disease to one that advances kidney health. The signing of the Executive Order was an event in and of itself, casting a national spotlight on kidney disease, but also one that will lead to years of downstream regulatory activity. Most of the provisions in the initiative direct the Department of Health and Human Services (HHS) to take steps to change or create new regulations to transform healthcare for kidney patients. Much of this regulatory activity is the direct result of NKF’s advocacy! We built the momentum for important kidney policy proposals and saw our work become part of the “Advancing American Kidney Health” initiative. Now it’s time to make sure that these policies move forward with the voice of the patient at their center!

What is NKF Up To?

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Kevin Longino (NKF), Secretary Azar, Mark Rosenberg (ASN)

On November 4, 2019, NKF and the American Society of Nephrology (ASN) announced a new partnership with the U.S. Department of Health and Human Services (HHS) to collaborate on the Public Awareness Initiative outlined in the Executive Order on Advancing American Kidney Health, an historic action initiative to transform kidney health.  This collaborative partnership will provide education about the risks of kidney disease and promote the early detection, treatment and management of kidney disease to improve patient outcomes. This initiative will also share information to enhance awareness of the causes and consequences of kidney disease.

One of the highest profile regulatory policies from the kidney health initiative is the ESRD Treatment Choices (ETC) payment model. A payment model is a way of paying healthcare providers to do something different than they are currently doing. Unfortunately, we know that right now our healthcare system rewards getting patients on in-center dialysis and keeping them there, rather than encouraging transplants and home dialysis. The ETC model would test whether paying providers who treat Medicare patients differently can encourage them to offer patients a wider range of treatment options for kidney failure so that, within just a few years, most new patients with kidney failure are either transplanted or dialyzing at home. NKF worked with our committee of policy experts to share patient perspectives on the payment model and ensure that patients’ choice of treatment is also protected. Check out NKF’s comments to HHS here.

Another important element of the initiative is reforming how Organ Procurement Organizations (OPOs) operate. OPOs are the organizations responsible for identifying and procuring organs from deceased donors. We want to make sure that OPOs identify every possible donor and transplant every organ possible – which can mean the difference between a wait-listed patient receiving a transplant or not! NKF wrote to HHS expressing patients’ support for reforms that would ensure OPOs are maximizing their chances of receiving a transplant.

What’s Next?

There hasn’t been a dull moment since the “Advancing American Kidney Health” initiative was announced in July and we don’t want the initiative’s activities to slow down any time soon!  In the next few months, we’ll be prepared for more new policies including a proposal to expand out of pocket expenses that can reimbursed by the National Living Donor Assistance Center (NLDAC) to assist living organ donors, more reforms to OPOs, and policies that encourage the development of a wearable or implantable artificial kidney. As we hear what’s new, we want to hear from the kidney community! Follow the @NKF_Advocacy twitter account to learn about what’s being announced and to share your thoughts on how these policies can be more patient centric.

Recent Regulatory Wins

The Advancing American Kidney Health initiative is not the only thing keeping us busy! We’re successfully pushing back on regulations that would make it more complicated for potential willing donors to engage with transplant centers, advocating for improvements to the Quality Incentive Program for dialysis facilities, and helping HHS implement NKF’s recommendations to reduce the number of kidneys that are discarded by transplant programs. In fact, very recently the Centers for Medicare and Medicaid Services (CMS) finalized one of our recommendations, a change to regulations that cause transplant centers to be overly conservative when considering accepting kidneys that might be less than perfect. Another great victory for NKF’s advocacy efforts for kidney patients!

You can keep up with what’s happening by following us on Twitter, where we share our take on what’s new in policy. We post our letters on NKF’s Policy & Legislation site here and have a dedicated page for the “Advancing American Kidney Health” initiative where we share how we’re bringing the patient’s voice to the Administration’s efforts.

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Bringing Your Kidney Disease Stories to Your Elected Officials

By Jason Nothdurft, Kidney Advocacy Committee member and kidney patient

The National Kidney Foundation’s New Jersey Kidney Walk took place at Veterans Park in Hamilton Township, Mercer County, in late September. If you’re reading this, you probably already know the importance of the Kidney Walk and its pivotal role in raising awareness and funds for the NKF’s mission.

If you didn’t attend the Walk, you may not have known about the special guests that attended. Congressman Donald M. Payne, Jr. (D-NJ), Hamilton Township Mayor Kelly Yaede (R), and Hamilton Township Council President Jeff Martin (D) all attended reminding us of the strong bipartisan support that exists for tackling the burden of kidney disease.

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Peter Crowley, Michele Toy, Jeff Martin, Paul Crowley

When holding awareness events such as this, it is helpful to invite elected officials who represent the community to participate. When policymakers come to these gatherings, they get to see kidney disease up close through the life experiences of the patients, living organ donors, families and practitioners and walk away with a deeper understanding of NKF’s important cause.

In our case, Council President Martin and Mayor Yaede were eager to accept our invitation and offer support for NKF.

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Mayor Yaede

Congressman Payne was also happy to be in attendance, and his participation offers an important advocacy lesson: He is from Newark and represents the state’s 10th Congressional District. The Kidney Walk occurred in the 12th Congressional District, more than 50 miles away from his Newark office. His attendance at our event happened because two amazing members of NKF’s Kidney Advocacy Committee, Judy and Abe Rosenstein, worked with NKF’s local office to invite him.

Congressman Payne also has a personal connection to the Kidney Walk. He announced on February 21, 2019, that he was starting dialysis due to complications related to diabetes. Judy and Abe started their outreach to his office when they met with his staff during the Kidney Patient Summit in Washington, D.C. and continued by following up with his home district offices later during the year. This included meeting with the Congressman over the summer. At that meeting, the Congressman asked how he could show his support for NKF, kidney patients, and organ donors.

At the Kidney Walk, Judy and Abe continued their conversation with the Congressman and introduced him to others from across New Jersey.  Congressman Payne, Jr. is a great champion of our cause already because he supports a number of kidney-health related bills and priorities, such as the Living Donor Protection Act, expanding Medicare coverage of immunosuppressive drugs, and increasing research funding for kidney disease. This is a great success for our kidney community! Consistency and hard work paid off for Judy and Abe’s mission.

Rosensteins & Rep Payne at NKF Walk 2019

Abe Rosenstein, Rep. Payne, Judy Rosenstein

Have you thought about how you can help the kidney community in your state and follow in Judy and Abe’s footsteps?  Consider how you can engage with NKF to help us bring our stories to the forefront of each of our elected officials’ attention by becoming an advocate or volunteering to help our local offices with their outreach efforts.  Email NKFadvocacy@kidney.org to learn more more!

 

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An Astounding Summer of Advocacy!

By Troy Zimmerman, Vice President of Government Relations

These are exciting times at the National Kidney Foundation thanks in no small part to the dedicated efforts of grassroots advocates like you. Together, we continue working with federal and state legislators to improve the lives of kidney patients today, and into the future.

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NKF advocates and staff at the launch of the Advancing American Kidney Health Initiative

Since the Kidney Patient Summit in March, where we stormed Capitol Hill to champion better kidney care policies, NKF staff, local board members, and volunteer advocates have kept up the momentum by:

  • Holding more than 150 additional meetings with federal legislators.
  • Conducting nearly 400 meetings with state legislators – including at state capital advocacy and health fair events hosted by local NKF offices.
  • The kidney community has used our advocacy system to send more than 3,600 messages to their lawmakers since May!

Advocates also have testified before legislatures around the country on behalf of NKF to help secure the passage of state-level versions of the Living Donor Protection Act as well. This includes testimony from advocates with NKF Serving Minnesota at their state capital earlier this month. Their powerful remarks to lawmakers came on the heels of fantastic news on September 6th that California passed its Living Donor Protection Act with an unpaid leave provision for organ donation.  That makes nine states this year – and we’re not done yet!

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NKF staff and advocates at the hearing for the Minnesota Living Donor Protection Act

We have also had more advocates than ever working with NKF staff to get their state and federal legislators to attend NKF’s events, like Walks and KEEP Healthy kidney screenings. Since May, NKF’s local offices and advocates have included 18 elected officials at events, like Walks and KEEP Healthy screenings, including one KEEP Healthy screening to be hosted by a major southern city’s mayor! We have outstanding requests to lawmakers for several forthcoming events and will continue to work to introduce your elected officials to the kidney community so they can hear your collective voices in person.

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Abe and Judy Rosenstein with Congressman Payne (D-NJ) at the New Jersey September Walk

These accomplishments are only made possible with your continued support and engagement.

With so much at stake for the kidney community, we cannot slow down now. We need YOU in the fight with us to finally pass the federal Living Donor Protection Act, rally support for forthcoming legislation to indefinitely extend Medicare coverage of lifesaving immunosuppressant drugs for kidney transplant recipients, and so much more. I hope you will keep asking your friends and colleagues to write Congress and make their feelings known.

Do you want to make an even bigger impact as we seek to finish strong in 2019? Email me at NKFadvocacy@kidney.org to ask about the latest opportunities to get involved. You have a story that only you can tell, and we want to make sure it is heard.

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NKF Advocates at the Kidney Patient Summit

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Get Desired R.E.S.U.L.T. from Your Stories

By Piper Hendricks, advocacy communications professional

In the post below, I share my approach to storytelling. I designed the R.E.S.U.L.T. approach (acronym explanation to come) for storytellers with a mission – for people who, as we say at my nonprofit p.h. balanced films, know that “stories power change and stories change power.”  In the weeks and months ahead, I’ll post an article on LinkedIn about each of the individual elements in more detail.

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NKF advocates Curtis Warfield and Jim Myers meeting with Rep. Visclosky (D-IN)

August recess, when Members of Congress are in their home states, is one of the key times of the year when advocates tell their stories and use their experiences to initiate change. With that in mind, I’m honored to share this summary with the National Kidney Foundation and their advocates dedicated to the awareness, prevention, and treatment of kidney disease. Having recently lost an uncle to kidney disease, I thank you for all you do on behalf of the 37 million people in the United States who face this disease’s potentially devastating challenges.

The R.E.S.U.L.T. approach outlines the elements a story needs in order to support advocacy efforts to change (or defend) a law, regulation, or policy.

When used properly, the narrative arc can literally change internal brain chemistry and bridge external social divides. Advocates across the country are increasingly recognizing the potential of stories but, to be effective, advocates must also appreciate the distinction between storytelling for entertainment and storytelling for advocacy.

To stay on the correct side of that distinction, and knowing the value of checklists, I created the following approach for your advocacy communications (including communications beyond storytelling).

In its most abbreviated version, the R.E.S.U.L.T. approach asks:

RELATABLE: How can you make it relatable to your audience?  Does your audience already relate to your issue? Can they personally understand its importance? If not, your story is even more critical to illustrating the problem and ensuring they make the solution a priority.

EMOTION: How do you want your audience to feel during and after your story – and about the issue itself?

SOURCE: Who is the source of any story and statistics that you mention?  Will your audience happily listen to – and trust – you and your source(s)? Ensure you are using appropriate information and sources for your meeting.

UPLIFTING: Have you left any space for your audience to feel even an inkling of hope for a good outcome – or change for the better? (If not, expect their response to be “Why bother?”)  Remember that you want them to feel like they can be part of, or even leaders of, the solution.

LANGUAGE: The fact that your language should be accessible to your audience is a given. No Jargon and lingo!  Beyond that, ask: Does the language you are using resonate with your audience and their values?

TRANSFORMATIONThis element is the crux of both story and advocacy.  A story, by definition, is a journey that includes at least one change – a transformation – along the way.  A story has a beginning, an end, and somewhere along the way, something important happens.  For example, receiving a transplant or when Medicare no longer covered transplant medications.

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NKF advocate and local board member Sue Hendon testifying before members of the Kansas legislature

Bottom line: If these elements aren’t in your story and don’t illustrate your advocacy ask, you need to reconsider your story. Now, how will you frame your story to make it spur policymakers into action?

You can read more from Piper Hendricks on LinkedIn and find her Twitter @PiperTheDaisy.

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It’s Time to Broaden the Search for Solutions to Kidney Disease Management – the KidneyX: Patient Innovator Challenge Will Spotlight the Best Ideas Nationwide

By John R. Sedor, MD, FASN, Chair of the KidneyX Steering Committee and Kevin Longino, CEO, National Kidney Foundation

Too many American families have known the pain and difficulty of chronic kidney disease. An estimated 37 million U.S. adults live with the condition and countless others are at risk. Worst, most are not even aware. Left unchecked, kidney disease can progress to irreversible kidney failure, or end-stage renal disease (ESRD), leaving patients dependent on dialysis or a kidney transplant to survive.

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At the American Society of Nephrology (ASN) and the National Kidney Foundation (NKF), we have seen firsthand the toll of kidney disease on our friends, neighbors, and patient communities.

We have heard from those who languish on transplant waiting lists, who visit dialysis centers to receive treatment more often than most of us visit the grocery store, or who lived unaware of their illness for years while their condition quietly worsened.

Fortunately, we also see promising signs of hope. Just last month, for example, the Trump administration announced its historic “Advancing American Kidney Health” Initiative, an executive order and accompanying set of bold HHS actions that set ambitious goals for improving the lives of those with kidney disease across the country. These steps hold great promise to fundamentally transform kidney care and save precious lives, but there is still more work to be done.

Kidney disease patients need answers and, quite often, the most helpful answers don’t come from Washington D.C., but rather from the talents and ingenuity of Americans in communities across the country – medical professionals, academia, technology disruptors, patients, caregivers, or anywhere else for that matter. We should never put limits on where the next big advance in kidney care may arise.

That is why our organizations are partnering with the U.S. Department of Health and Human Services to launch the KidneyX: Patient Innovator Challenge, funded by NKF – an exciting new competition offering cash prizes for innovative ideas and solutions to improve the daily lives of those with kidney disease.

Maybe you’re a patient with a novel way to manage the side effects of dialysis or transplant treatment? Or perhaps you’re a researcher with a dynamic approach to helping patients gain independence and maintain a full, productive life? Your voice – and your solutions – deserve the chance to be heard and be rewarded.

The Patient Innovator Challenge, funded by NKF, will accept submissions now until September 16, 2019. Prizes will be awarded to winners in two categories: Category 1: “Solutions in Practice,” which are solutions already tried or put into practice; and Category 2: “New Ideas,” which are solutions that have not yet been created or tried.

Judges will review the submissions and up to 10 winners will be awarded $4,000 each in Category 1 and up to 15 winners will be awarded $2,000 each in Category 2 – making for $70,000 altogether in prizes.

Kidney disease affects Americans in every corner of our country, from every walk of life. It’s past time that we allow solutions to emerge in this same way. The KidneyX: Patient Innovator Challenge, funded by NKF will do exactly that. Learn more and apply today at www.kidneyx.org.

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Great Strides in Kidney Policy Through Patients’ Eyes

On July 10th, President Trump announced a bold vision for transforming kidney care for the estimated 37 million Americans affected by kidney disease. During his speech, attended by National Kidney Foundation (NKF) volunteers, patients, care partners and leadership the President laid out the Administration’s detailed plan to help increase living organ donationdeceased organ donation, increase earlier detection and earlier care of chronic kidney disease (CKD), increase incentives to develop new and cutting-edge treatments for kidney disease and advance home dialysis.

Because of the magnitude of the Executive Order (EO)’s impact on the kidney community, we were interested in talking to patients and living donors to hear their opinions about its impact on them and the kidney community.  Below are some of their reactions.

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National Kidney Foundation advocates and staff

Ivey Dennen, Connecticut: 

I am thankful I was asked to attend President Trump’s announcement about the new initiatives regarding both pre- and post-transplant kidney care.

This was reportedly the first time in 46 years a U.S. president has taken meaningful action on improving kidney care.  The National Kidney Foundation with its partners, patients and advocates fought for years for these initiatives which President Trump signed as the Executive Order.  I hope this will help make diagnosis, treatment and transplantation easier for those currently living with CKD and ESRD, as well as those yet to be diagnosed.

The order calls for rewarding doctors for early diagnosis of kidney disease, making improvements in organ procurement and decreasing organ discards.  This will make transplantation easier and get patients off the waitlist and dialysis treatment.  It is exciting for patients who may have never thought transplant was an option due to lack of knowledge, lack of organs, or lack of funds.

I know there are many details to work out with the Executive Order and I hope to see it implemented swiftly.

David Sultzer, MPA, MPH, CHES
Maryland: 

The speech and signing of the President’s Executive Order (EO) marked an incredible day of movement, advancement and awareness for kidney disease advocates.  So many of us have heard advocates, like National Kidney Foundation, speak powerfully about the importance of improving kidney care for years. Now, the same words were coming from the President of the United States and the Secretary of Health and Human Services (HHS), Alex M. Azar.  This was a day of great rejoicing and momentum for the kidney community, due to a multi-faceted and widely encompassing policy signed by President Trump.

From the perspective of a kidney donor, I know there is still more work to be done.  For example, we must continue to champion  federal and state proposals to remove financial burdens for living donors and federal protection for living donors against discriminatory practices by life, disability and long-term care insurance companies.  What also remains unfulfilled is a level of appreciation and job security by living donors’ employers for those offering the selfless gift of life to kidney disease patients.

The fight is not over but, with the EO signed by President Trump, the National Kidney Foundation and its advocates have taken the high ground in the battle against kidney disease.

Haley Grace Jensen, MBA, MPH
Massachusetts: 

As a patient and professional, I am so excited about the Administration’s vision for kidney disease. Their major goals – to improve early detection, encourage home dialysis, and increase transplantation – are exactly what kidney disease patients and their families need. I was just 14 when my kidneys failed unexpectedly, and home dialysis allowed me to stay in school, feel better, and have a much more normal life. My brief stint on in-center dialysis required an hour’s drive each way to a pediatric center, where I sat and watched a little baby named Estrella be dialyzed on the machine next to me. It’s no way for a child, or for anyone, to live long-term or while waiting for a transplant.

For too long, efforts to improve kidney care have been held back by a mix of poor incentives and quality metrics for providers across the care continuum. Everyone wants to do the right thing for patients, but that can be difficult to do when the incentives aren’t there – or worse – are in the wrong place.  I am ecstatic that the leadership at the White House, Department of Health and Human Services, Medicare, and the Centers for Medicare and Medicaid Innovation (CMMI) are personally invested in making the changes that will help steer us in the right direction. The heartfelt testimony from families and patients made it clear how badly these changes are needed.

The most encouraging part of the event for me was Secretary Azar’s statement about how this is the result of many people and organizations working together to bring about change. This isn’t a battle; we aren’t here to tear each other down. This is a collaborative effort to improve the lives of millions of Americans that’s been a long time coming. I’m so glad we’re all on the same team, and I can’t wait to see what else we can do together.

 

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Launch of the Advancing American Kidney Health Initiative

On July 10, 2019, NKF welcomed more than thirty patients, families, and providers to Washington, DC for an event launching the Advancing American Kidney Health Initiative. In remarks delivered at the event, the President identified the fight against kidney disease as a core national priority and said that the administration is “determined to get [kidney patients] the best treatment anywhere in the world.”

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Following his remarks, the President signed an Executive Order (EO) establishing that it is the policy of the United States to prevent kidney failure through better diagnosis, treatment, and incentives for preventative care, increase alternative treatments for ESRD, encourage the development of the artificial kidney, and increase access to kidney transplants. If these policies sound familiar, it’s because NKF’s incredible patient advocates have been relentlessly driving for a national spotlight on these issues, which will improve the care and quality of life of the 37 million Americans with kidney disease.

A report released on the same day by the Department of Health and Human Services (HHS) laid out three bold goals through which to achieve the administration’s vision for transforming kidney care:

  1. To reduce the number of Americans developing ESRD by 25 percent by 2030 through improved efforts to prevent, detect, and slow the progression of kidney disease.
  2. To aim for 80% of new American ESRD patients receiving dialysis in the home or receiving a transplant by 2025.
  3. To aim to double the number of kidneys available for transplant by 2030.

The report, Advancing American Kidney Health, defines the roadmap by which HHS will target its goals. The report outlines the public health projects that HHS will support in its efforts to reduce the risk of kidney failure and the steps HHS will take to give patients greater access to home dialysis and transplantation, increase organ recovery, reduce the discard rate, and increase the number of living donors by removing financial disincentives for organ donation.

The Executive Order lays out timelines for actions that the federal government will take to achieve its goal of transforming how kidney disease is prevented and treated. The Executive Order directs the Secretary of HHS to launch a kidney disease awareness initiative within 120 days, take steps to promote the development of a wearable or implantable artificial kidney within 120 days, propose new regulations for the oversight of Organ Procurement Organizations (OPOs) within 90 days, streamline the process of kidney matching to reduce discards within 180 days, and propose new regulations to remove barriers to living organ donation within 90 days.

The President estimated that, as a result of these actions, “an estimated 17,000 additional Americans could receive kidneys that they desperately need.”

The Order also directs HHS to conduct a pilot on whether changing how providers are paid can lead to earlier identification and treatment of patients who are at high risk for disease progression and higher rates of home dialysis and transplantation. HHS is already making progress on this element of the initiative! The proposed regulation that would enable this pilot, known as the ESRD Treatment Choices Model, was published yesterday. We will publish specific details about the model on the blog later this week. The order also instructs HHS to develop a learning collaborative to identify best practices for increasing the supply of kidneys available for transplant.

Later in the event, the President invited patients to share their kidney stories, several of whom expressed hope that the policies announced would “provide much better care and treatment for the millions and millions of Americans living with kidney disease” and “help families navigate the renal care system with less confusion and more ease.”

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NKF Advocacy in Action: Chris’s Story

This year, several NKF offices hosted their first advocacy days in state capitals, including in Minnesota where Chris Bemis lives.  These state capital advocacy days allowed NKF and our 200 advocates to meet with and educate more than 350 state legislators across the country in one week.  Chris was one of these amazing volunteers who took time out of his busy life to help improve our policymakers’ understanding of kidney disease.  If you are interested in hearing from more of our advocates, click here to watch a new video on NKF’s advocates’ efforts.

-Andrew Fullerton, National Kidney Foundation


Over the past several months as an NKF advocate volunteer I’ve been linking arms with others to educate our state legislators about kidney disease and the urgent need for passage of the bipartisan Living Donor Protection Act (SF 1146)  – a policy solution that NKF is championing in both in Congress and in statehouses across the country.

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Chris and Jim Bemis

NKF’s advocate Dave Sultzer wrote about similar legislation passed in the state of Maryland.

Like these other measures, the Minnesota bill would protect living organ donors from discrimination by life, long-term care and disability insurers, and would ensure donors can take time away from work under the Family and Medical Leave Act for recuperation without facing penalties. In doing so, the bill would establish parity with the rights already afforded to bone marrow donors in our state.

Part of advocacy is telling our stories. In explaining why kidney disease and the Living Organ Donor Protection Act is so meaningful to me, I shared about my father’s difficult journey with CKD and how it nearly took him from me.

I recalled the glassy-eyed look of confusion that comes when toxins have all but consumed the body of someone who was living a full life just a year earlier. I then shared the joy that I felt in being able to serve as his living organ donor and the second chance at life that my father has experienced in the time since. It remains of the greatest things I have done with my life, and as I told Minnesota lawmakers, I want to see our state’s laws encourage more people to consider this life-giving act.

In March, my dad and I shared our story with lawmakers and staff at the state capital and together our efforts made a difference. Legislators like State Senator David Dibble (D-District 61), were moved to join as a cosponsor of the bill! Senator Dibble also shared his family had been impacted by kidney disease and that he had already been tested as a donor for a family member currently in kidney failure.

I’m confident that our “orange army” of NKF volunteers can make the Living Donor Protection Act a reality in Minnesota

Have you written to your legislators yet?  Please help us and share your own story with them.  I hope to see you at the state capital for the next World Kidney Day!

Chris Bemis
Minnesota

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NKF Advocacy in Action: Armand’s Story

Armand Halter, a new member of the National Kidney Foundation’s (NKF) Kidney Advocacy Committee, is one of our most active and dedicated advocates.  Speaking with him recently, I was moved by how engaged he has become and about his journey from tentative advocate to experienced, bold advocate in the space of a year.  His dedication and activism has become a symbol of what can be achieved when patients and practitioners decide to make a difference.

I hope you will join him in his great work, whether you live in Connecticut or somewhere else in the U.S.

-Andrew Fullerton, National Kidney Foundation


 

More than 23 years ago, I joined the ranks of kidney transplant recipients living across the country. In my case, I received two kidneys from a deceased pediatric donor. This gift of life, which came at a heart-breaking time for another family, has allowed me to see my two sons grow into adulthood, start their careers, and get married. Now, I’m awaiting the arrival of a granddaughter at the end of May.

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Armand Halter

My kidney transplant also ensured I could continue working and earning a living for my family until I reached retirement. Today, I am working part-time. Still, until recently, something was missing.

I discovered that void was an unfulfilled desire to give back, so I did something about it. A year ago, I volunteered for the NKF Peers program. Then, in November 2018, I volunteered to become an NKF advocate.

Things began with a couple of webinars and training sessions. Then came the invitation from NKF to attend the 2019 Kidney Patient Summit, where I would have an opportunity to advocate for kidney disease priorities before my Congressman and Senators.

I’ve engaged with government officials before as a former Department of Defense contractor, but even for me meeting with lawmakers and their staff can be daunting. Thankfully, NKF took the guesswork out of the task.

Their summit materials online gave me a jumpstart on preparation. Then, at the kick-off session, our group leader helped each of us practice our “pitch” for Congressional meetings – an enormous help!

When we met with lawmakers, we were never left to our own devices. Advocates attended each meeting as a group with other volunteers from our state. The support of my fellow kidney disease patients in the room made it easier for me to confidently share my story.

NKF gave us all the tools we needed to make a winning case for policies that would help organ donors and kidney disease patients alike.

The success of the NKF Kidney Patient Summit emboldened me to meet with my Congressman’s in-state staff once I returned home to Connecticut. A simple email directed to my Congressman’s local staff led to a meeting.

My local NKF Program Manager and Executive Director gave me additional support and connected me with two other “Kidney Storytellers” to bring to the meeting – a living donor and her recipient who have since become advocates as well!

Thanks to NKF, I’ve developed a rhythm for telling my story and pressing lawmakers for change. Most recently, I’ve turned my focus to our state legislature in Hartford and am championing a state-version of the Living Organ Donor Protection Actlegislation introduced in Congress and moving through other state legislatures across the country to enshrine robust legal protections for all who partake in the selfless gift of living organ donation.

Since the Summit, 65 new legislators have become co-sponsors of the federal version of this bill introduced in Congress and similar measures have passed in eight states this year, including Colorado, Oklahoma, Arizona and Maryland! All due to the work of advocates like me.

Serving as an NKF advocate has given a great sense of meaning and purpose and I want others to know the same satisfaction.

I invite you to join me by volunteering to write your legislators or even becoming an NKF advocate.  My experience has shown me that NKF will give you all that you need to be successful and help you share your share your story to make a difference for kidney patients.

Armand Halter
Connecticut

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NKF Advocacy in Action: Curtisha’s Story

Last week, we highlighted a practitioner from Oklahoma who took the extra step to improve the lives of his patients through changing public policy impacting living organ donors in his state.  This week, we are highlighting a patient advocate who is trying to “pay it forward” by championing policy change at both the state and federal level by helping to educate her policymakers on how kidney disease impacts millions of Americans.  Will you join her?

-Andrew Fullerton, National Kidney Foundation


My name is Curtisha Anderson from Kansas City and I was diagnosed with end-stage renal disease (ESRD) at the age of 14.  My kidney disease was caused by Systemic Lupus Erythematosus, an autoimmune disease where the body’s immune system attacks its own tissues.  In 2017, I received a kidney transplant from a deceased donor.

Curtisha Anderson

Curtisha Anderson

On March 14th, World Kidney Day, I attended an event called “Kidney Day at the Capitol,” hosted by the National Kidney Foundation. There, I joined with other NKF volunteers to raise awareness among our state legislators of chronic kidney disease, share our personal stories and dispel myths about organ donation.

It was also an opportunity for us to seek support from our legislators to help others affected by kidney disease by working to improve our kidney disease policies in the state. I met kidney patients, donors, and other advocates from all walks of life who, like me, are motivated to make a difference for every person touched by kidney disease.

Advocacy is very important to me. My life has been totally changed by kidney disease, but the gift of organ donation has given me renewed hope and good health.  I feel a responsibility to pay it forward by being a champion for others with kidney disease and ensuring that our laws help – rather than hinder – facilitate organ donation and protect donors and recipients alike.

My presence at the state capital puts a face to the 30 million Americans affected by kidney disease and the many others who may be at risk. I know that I made a difference – I saw it on lawmakers’ faces and in the progress that has been made since.

In fact, since I attended that event a few short months ago, Kansas became one of ten states in the country to pass bold legislation protecting living organ donors from insurance discrimination because of their selfless gift of life.

How are you using your voice for patients across the country impacted by kidney disease? We cannot wait for others to speak up. We must use our voices now.

 Will you consider joining me to advocate for change? Email NKFadvocacy@kidney.org to learn how you can get involved.

Curtisha Anderson
NKF Volunteer- Kansas

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