Educating Congress about KidneyX’s Important Role in Accelerating Kidney Care

By Kevin Longino, Kidney Transplant Recipient and CEO of the National Kidney Foundation

Earlier this month, I had the honor of joining several distinguished panelists to educate policymakers and request that Congress fund KidneyX at $25 million for FY 2021.  The panel, which included Emily Levy from Synergy Partners; Jeff Ross, CEO of Miromatrix; Ed Simcox, Chief Technology Officer for the Department of Health and Human Services (HHS); and John Sedor, KidneyX’s Chair highlighted KidneyX’s initial prize competitions, its central role in the Administration’s strategy to advance care for the more than 37 million kidney patients (including the development of the world’s first artificial kidney!), and why Congressional support is critical for KidneyX to achieve its mission.

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KidneyX is a public-private partnership between the U.S. Department of Health and Human Services (HHS) and the American Society of Nephrology (ASN) that incentivizes innovators to fill unmet patient needs through a series of prize competitions. NKF is a proud partner in this effort and I am honored to serve on the KidneyX Steering Committee.

Each of the panelists spoke about how KidneyX is already starting to drive innovation in the marketplace. HHS Chief Technology Officer Ed Simcox shared his experience at the 2020 Startup Health Festival in San Francisco, where startup companies showcase new technology and applications to the investor community. “People are now coming up to me with new adjacent technologies seeking ways to promote these new technologies to benefit the kidney community.”  Other panelists highlighted, however, that significant additional resources are needed if this initiative is to deliver on its mission and called on Congress to increase funding for this important initiative.

Experts estimate that KidneyX will need a total investment of $250 million over five years to develop an artificial kidney and accelerate technology development in the prevention, diagnosis, and treatment of kidney diseases.  In FY 2020, Congress began its commitment to KidneyX with a $5 million appropriation.  NKF calls on Congress to significantly increase our federal government’s response to kidney disease by increasing funding for KidneyX, kidney health public awareness efforts, biomedical research, and other programs that support people with kidney disease and their families.

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NKF Applauds Administration’s Focus on Kidney Health

On February 10th, the Administration released its vision for funding the U.S. government, including proposals to extend Medicare coverage for immunosuppressive drugs for kidney transplant patients.  This policy change could save the lives and transplants of thousands of kidney patients, while also saving taxpayers $73 million to $300 million over ten years, according to separate studies by the U.S. Department of Health and Human Services and the Centers for Medicare & Medicaid Services. While Congress must pass legislation for this change to take place, it is promising that the Administration also referenced it in their budget blueprint.

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The budget proposal also included provisions to increase Organ Procurement Organizations (OPOs) accountability measures and expand benefits under the National Living Donor Assistance Center’s (NLDAC).  Collectively, these reforms will increase the number of organs available for transplant and have an overall positive impact on the kidney community.

While Congress begins its process of reviewing the Administration’s budget and assembling its own, the National Kidney Foundation will continue to fight for improved funding for kidney programs and research. 

A new priority this year is a request for $10 million to support a kidney disease awareness initiative, as outlined in Administration’s July 2019 Advancing American Kidney Health (AAKI) initiative.  This funding would help identify the 90% of kidney patients who do not know they have the disease.  NKF also calls on Congress to fully fund the KidneyX program at $25 million.  This important public-private partnership incentivizes innovators to fill unmet patient needs through a series of prize competitions focused on technology development and commercialization for the prevention, diagnosis, and treatment of kidney diseases.

NKF will also continue to work with Members of Congress on both sides of the aisle to fight for increased funding for the Centers for Disease Control and Prevention’s Chronic Kidney Disease Initiative, the National Living Donor Assistance Center, and the National Institutes of Diabetes, Digestive and Kidney Disease (NIDDK).

As the appropriations season gets underway, we will be calling on Kidney Advocates to contact their members of Congress in support of these funding requests.  We hope you will support these efforts to that we can all improve awareness, treatment and provide a brighter future for kidney patients.

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Congressional Hearing Held on the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2019 (H.R. 5534)

Congressmen Kind (D-WI) and Burgess (R-TX) have given the kidney community an amazing New Year’s present by introducing the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2019 (H.R. 5534)! NKF has worked very closely with our Congressional champions, the transplant community, and other stakeholders to craft and build support for the legislation, which would eliminate the 36-month limit on Medicare coverage of immunosuppressive drugs for kidney transplant patients who do not otherwise have coverage for these important medications.

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Even more exciting, on Wednesday, January 8th, the House Energy and Commerce Committee held a hearing, during which NKF Board Member Dr. Matthew Cooper testified on behalf of NKF and the kidney community for this legislation. Throughout the hearing, Members of Congress commented on the absurdity of the current policy and promised to move the bill quickly.  Subcommittee Chair and Co-sponsor of the legislation Anna Eshoo (D-CA) commented, “This bill will move. It just makes sense.”  Clearly, this very promising, but NKF must continue to advocate for the passage of this life-saving legislation.

Please help us ensure that Congress gives all kidney patients this landmark benefit!  Write your Members of Congress to urge them co-sponsor this bill so that we can help those in need NOW.

Click to read NKF’s and Dr. Matthew Cooper’s testimony.

Click to read NKF’s press release on the hearing.

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New Rules to Help Organ Supply Crisis and Funding for Living Donors

On December 17th, the Administration and Congress took significant steps towards improving kidney disease policy and funding.  The National Kidney Foundation applauds these efforts to help the nearly 95,000 Americans waiting on a life-saving kidney transplant.

White_House_DCThe Administration announced two new proposed rules to address the critical organ supply crisis in America by expanding reimbursable expenses for living donors, establishing quality metrics for Organ Procurement Organizations (OPOs) and increasing the supply of transplantable deceased donor kidneys.

One of the proposed rules will expand financial assistance to living donors under the National Living Donor Assistance Center (NLDAC) to  allow donors who take time off from their jobs for donation and recovery to receive reimbursement for lost wages, childcare and eldercare expenses—all of which NKF has advocated for as outlined in A Path Forward for Increasing Kidney Transplantation. These changes will help ensure living donors are made financially whole after giving the gift of life.  Increasing the available pool of resources under NLDAC is critical to ensuring its success and to increasing the number of living donors.

Another proposed rule will put quality metrics in place for OPOs to help minimize kidney discards and encourage the use of less-than-perfect deceased donor organs, which can still be viable options for patients on the waitlist. The Centers for Medicare and Medicaid Services (CMS) estimates that if all OPOs were to meet both the donation and transplantation rate measures, the number of transplants would increase by thousands per year. If finalized, these changes would take effect in 2022.

capitol buildingMeanwhile, The House of Representatives approved the FY2020 appropriations bill that includes a funding increase for several kidney disease programs within the Department of Health and Human Services (HHS).

Specifically, the bill increased funding for the NLDAC by $1 million, bringing the overall funding level to $4.5 million.  The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) will receive over $2.1 billion.

Additionally, Congress provided $5 million for the KidneyX initiative – a public-private partnership to accelerate the development and commercialization of next-generation innovations to improve in the prevention, diagnosis, and treatment of kidney diseases.  Finally, CDC will receive $2.5 million towards the prevention and promotion of kidney disease. NKF applauds Congress for these investments in programs to improve the health and well-being of people with kidney disease.

In the coming months, NKF will amplify our advocacy efforts with the Administration and Congress to ensure that these public policy opportunities provide the maximum impact for patients. NKF’s incredible advocates are responsible for the federal government’s unprecedented focus on kidney disease patients; and we look forward to your continued partnership in 2020.

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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.

Rosensteins & Rep Payne at NKF Walk 2019

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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