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.

Armand Halter.jpg

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

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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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NKF Advocacy in Action: Greg’s Story

Advocacy is about making a difference, whether it is changing the life of a patient one on one or changing the life of a patient by impacting policy.  Over the next few weeks, we will be sharing stories of several of our patient and practitioner advocates who have made a difference by engaging in policy change.  We will show you what a single person can do when they set their mind to achieving change.  Our first story is about a practitioner advocate in Oklahoma who heard about what a patient had done in Arkansas, passing their state Living Donor Protection Act, and wanted to do the same in his state.

-Andrew Fullerton, National Kidney Foundation

By Greg Lewis, RN BSN, Director of Pediatric & Adult Dialysis at OU Medicine and Local NKF Board Member

When I learned the National Kidney Foundation was planning to ramp up its presence in Oklahoma, I was ecstatic. As the Director of Pediatric and Adult Dialysis at OU Medicine, I had seen their resources help countless dialysis patients under my care.

I had joined NKF at a The BIG ASK: THE BIG GIVE event the Oklahoma Transplant Center and learned of their Living Donor Protection Act, legislation that had just been passed in Arkansas and advancing in state legislatures across the country, thanks in part to NKF’s advocacy.


Greg Lewis, Dr. Alan Hawxby, Rep. Moore (96th District), and  Hollye Hunt (left to right)

Upon hearing the stories of those in need of organ donation and the disturbing stories of living organ donors who had faced insurance discrimination, I knew I wanted to be a part of the effort to secure introduction of this bill in the Oklahoma state legislature.

I’m not a lobbyist, I’m simply a dedicated healthcare professional who cares about my patients and wants to see fairness for all who participate in the life-giving act of living organ donation. I knew I’d need help, so I secured the assistance of our hospital’s lobbyist, Patti Davis.

Patti didn’t event wait for me to finish my pitch before eagerly volunteering her expertise. Around this time, she also transitioned from her role at our hospital to become President of the Oklahoma Hospital Association. Suddenly, kidney advocates in Oklahoma had a champion who was uniquely positioned in a powerful role to affect meaningful change!

The next step was to gather stakeholders from across the state to gain their support. I made sure to include everyone I could think of: transplant centers, LifeShare, local hospital executives and, of course, local and national leaders from NKF who helped rally consensus for us to move forward.

Senator Jason Smalley (R-District 28) happily agreed to serve as the bill’s prime sponsor in the Senate and led the measure to unanimous passage in the upper chamber.  Rep. Terry O’Donnell (R-District 23) was our champion in the state House. At his invitation, I testified in support of the bill before the House Insurance Committee. Alongside a transplant surgeon and the mother of a kidney disease patient, I also met individually with members of the committee and the State Insurance Commissioner to make our case for the bill.

I had never stepped food in the state Capitol before, so it was unnerving to say the least, but legislators were receptive to our message. When all was said and done, the bill passed unanimously through both the Insurance Committee and the full House of Representatives.

Within the month, Gov. Kevin Stitt signed the bill and we are planning a huge bill signing celebration – I can’t wait!  Sen. Smalley has asked NKF advocates to join the Governor for a photo-op in the days to come and to celebrate the occasion with him on the Senate floor.

It was an honor to play a role in the advancement of this critical policy solution that will hopefully help more Oklahomans to consider the gift of living organ donation. My story is proof you don’t have to be a lobbyist or a politician to affect change, you simply need to show up.

Will you join me in working to enhance kidney disease policies in Oklahoma and around the country?

Please, become an advocate, like me, by emailing the National Kidney Foundation (NKFadvocacy@kidney.org) or writing your federal legislators to ask that Congress follow Oklahoma’s lead by passing protections for living organ donors.

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NKF Secures Wins for Kidney Patients in Key Funding Bill

By Troy Zimmerman, Vice President of Government Relations

This week, the House Appropriations Committee is expected to approve legislation to fund the Department of Health and Human Services (HHS) through Fiscal Year 2020. Thanks to the dedicated work of NKF advocates across the country, the legislation includes key provisions to improve the lives of chronic kidney disease patients, living donors, and their loved ones.

capitol building

To start, the bill dedicates $32 million for organ transplantation activities under the Health Resources and Services Administration, $10 million of which is specifically allotted for the National Living Donor Assistance Center (NLDAC) to help living organ donors with unreimbursed out of pocket travel expenses related to donation – that’s an increase of $6.5 million over last year’s total.

NKF worked closely with members of the Appropriations Committee to secure this unprecedented funding increase and rally bipartisan support for its inclusion. Ensuring that living organ donors aren’t left on the hook for travel expenses tied to their gift of life is a small but meaningful step toward encouraging more people to consider the selfless act of living organ donation.

The bill also secures a whopping $41 billion for the National Institutes of Health – a $2 billion increase over last year – including $2.1 billion for the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).

Additionally, the Committee provided $10 million for the KidneyX initiative – a public-private partnership to accelerate the development and commercialization of next-generation dialysis products (see NKF’s earlier praise of this program here).

Finally, the House bill promises $2.5 million in funding for the Centers for Disease Control and Prevention’s (CDC) Chronic Kidney Disease Initiative, while the HHS Million Hearts Initiative will receive $4 million.  These levels are consistent with last year’s totals and NKF was proud to lead the charge in ensuring their continued support in this year’s legislation.

While this funding bill shows great promise for kidney patients nationwide, more work remains ahead. Following passage in the Appropriations Committee, the bill will head to a vote by the full House of Representations.

The Senate Appropriations Committee has yet to draft its version of this legislation, which will eventually have to be reconciled with the House bill. With your help, we will ensure that these gains for kidney care are upheld in the final bill that reaches the President’s desk.

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Leading the Charge for Kidney Health in Los Angeles Through Clinical and Community Partnerships

By Franco Reyna, Program Manager – NKF Serving Southern California and Nevada

Kidney disease connects many communities. It connects the public at large to raise awareness about the importance of kidneys and kidney health, individuals who are at risk for the disease, people living with kidney disease (common and rare types), their family members, caregivers, and kidney donors as well as health professionals who provide medical care and support to people with kidney disease. In Los Angeles (LA) County, the National Kidney Foundation (NKF) of Southern California is driving kidney health action through partnerships with local public health, clinical, and other stakeholders.


Through partnership with the Mexican Consulate in Los Angeles, the National Kidney Foundation Serving Southern California provides kidney health education and health screenings to LA County residents.

Heart disease and stroke are the two of the leading causes of death in Los Angeles County. Social determinants of health including language, housing, food insecurity also significantly impact the county, which is one of the largest (more than 11 million people), and most diverse (with more than 200 languages spoken) counties in the United States. In response to the health needs of LA county residents, the NKF collaborates with community partners and key health stakeholders to focus on chronic disease prevention efforts targeting individuals most at risk, in particular  African Americans and Hispanics residents of Los Angeles.


An individual’s health, longevity and well-being are connected to the places they live, learn, work, and play. The NKF of Southern California has established ongoing relationships with non-traditional health partners, such as the Mexican Consulate in Los Angeles, in order to reach communities where they are. The LA County Mexican consulate’s health initiative, Ventanilla de Salud (health window), is a partnership between the country’s consulates across the U. S., local health entities, and community-based groups. The NKF joined the initiative based on the shared interest of providing health information and resources to individuals who use the consulate’s services as well as the general public.

For the past several years, NKF has participated in the initiative’s resource events held the first Monday of each month as well as community health events. This partnership has supported NKF’s efforts to provide kidney health education through our Your Kidney and You (YKY) Program, in which trained NKF volunteers educate others in their communities about kidneys, risk factors for kidney disease, and what can be done to protect kidneys. Also, in partnership with the consulate, NKF Serving Southern California provides health screenings, educational information and access to a clinician for consultation, through our Kidney Early Evaluation Program (KEEP) Healthy Program. We are pleased to collaborate with the Mexican Consulate to bring both YKY and KEEP programs as well as education materials in both English and Spanish to raise awareness among this diverse community.

The NKF of Southern California has also established key partnerships with various health care providers and systems serving LA County’s most medically underserved residents, such as Proyecto del Barrio, a community health center providing health and human services to mostly low-income residents of the San Fernando Valley area.  Our partnership with the clinic began in the Summer of 2018, by building a relationship with its health education and community engagement staff. Today, on average for each education session, NKF engages 20-25 patients of the clinic to provide education on chronic disease prevention and management of diabetes, hypertension, cholesterol and other cardiovascular conditions as well as kidney disease. Through this partnership, NKF is not only able to reach patients at risk for kidney disease but the members of the community by participating in partnering on Proyecto del Barrio’s community health events.


The National Kidney Foundation Serving Southern California partners with community health centers, such as Proyecto del Barrio, to reach underserved communities in Los Angeles County.

We are grateful for our partnerships with organizations, such as the Mexican Consulate and Proyecto del Barrio Health Center that are committed to creating thriving and health communities. The NKF Serving Southern California aims to build partnerships across Los Angeles county with academic institutions, health systems, community-organizations, corporations and residents of the community to ensure that all residents have the opportunities and resources needed for optimal kidney health and well-being.

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Leading the Charge for Kidney Health in Greater New York: A 15 Year Partnership with New York Road Runners (NYRR)

By Meg Gilmartin, Executive Director; Sean Rugenstein, Team Kidney Staff Partner – NKF Serving Greater New York and Connecticut

Rooted in a shared interest in building better, healthier, communities, National Kidney Foundation (NKF) Serving Greater New York and Connecticut is proud to celebrate the fifteenth anniversary of our partnership with the New York Road Runners (NYRR). The relationship originated in a collaboration with the United Arab Emirates Embassy, whom each year has generously selected the NKF as beneficiary of their UAE Healthy Kidney 10K race, produced by NYRR. From there, the NKF-NYRR relationship has evolved into a robust partnership that has provided kidney health education to residents of the Greater New York area.

NY Blog1

Team Kidney runners celebrate their finish with Sidney the Kidney

In September 2018, NKF participated in a NYRR panel discussion to provide information on the relationship between healthy lifestyles and kidney health. This education event, hosted in conjunction with the New Balance Bronx 10-Mile race, provided critical information to this community that is disproportionately impacted by chronic conditions and ranked the least healthy county in the state of New York with high prevalence rates of hypertension and diabetes. The NKF-NYRR partnership highlights the shared interests in delivering kidney health education to communities with the greatest health needs in Greater New York.

Also, in preparation for this year’s UAE Healthy Kidney 10K, NKF and NYRR will host, The Benefits of Running for Kidney Health, an educational event on April 24.  NKF has assembled an inspiring panel consisting of living kidney donors, a recipient of a kidney transplant and a nephrologist. The event will aim to elevate the conversation of transplant and dispel myths around living donation, particularly as it pertains to both a recipient and donor’s ability to live a healthy and active lifestyle. This event is a part of a week-long promotional effort leading into the race which allows the NKF brand and awareness message to reach a large audience. To learn more about the event, please visit https://www.eventbrite.com/e/nyrr-runtalk-the-benefits-of-running-for-kidney-health-tickets-59199609626

NY Blog2

Sharing your connection to kidney health is one of the best ways to raise awareness. Why do you run?

On April 28th, runners of the UAE Healthy Kidney 10K will receive their medal from members of the local kidney community, including dialysis patients, care givers, living donors and recipients. The 10K race finish line’s festival will also include an educational hub hosted by the NKF, in which thousands of attendees will receive information on risk factors associated with kidney disease and learn how they can heart their kidneys.

In addition to helping NKF bring kidney health education to local communities, our NYRR partnership also supports NKF’s goal of improving the lives of those at risk and living with kidney disease. NKF is proud to be a Bronze Charity Partner to the NYRR which has provided coveted entries into premier endurance events, such as the New York City Marathon and United Airlines Half Marathon. Most recently, Team Kidney members in these two races fundraised over $80,000, in addition to the approximately $65,000 raised annually through the UAE Healthy Kidney 10K. The money raised through these races has provided pivotal support to local programs that will improve health outcomes for the 1 in 3 adults at risk for kidney disease.

NY Blog 3

Corey, a kidney donor, shows off his finisher medal proving that you can live an active lifestyle post-transplant.

We are proud to collaborate with an organization, such as NYRR, that aims to inspire communities, enhancing lives through action, education, and awareness. Our shared organizational values have been key to the success and impact of success and impact of this partnership. We thank the NYRR for their 15-year partnership and look forward to continuing our work together for many years to come.  For more information about the 15th Annual UAE Healthy Kidney 10k, please visit https://www.kidney.org/events/team-kidney/15th-annual-uae-healthy-kidney-10k

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Leading The Charge for Kidney Health in South Texas Through Partnership with Blue Cross BlueShield of Texas

By Amanda Crowley-Rios, Program Director;   Lorna Hankins, Executive Director – NKF Serving Texas

South Texas residents have one of the highest incidences of kidney disease in the country, and like many who are at-risk or living with kidney disease, they are largely unaware of their condition.  Diabetes, the leading cause of kidney disease, is prevalent in this region where Hispanics comprise 39% of the state’s population and their genetic predisposition to diabetes makes them about 1.5 times more likely to develop End Stage Renal Disease (ESRD) than non-Hispanics.  Improving kidney health in Texas presents a unique challenge because of its broad and ethnically-diverse population and because it comprises a very large geographic area with many rural areas that are medically-underserved.


Blue Cross Blue Shield Texas and staff from NKF Serving Texas pose with the CareVan, which bring kidney health education and screening services to residents of South Texas.

In response to the health needs of The National Kidney Foundation (NKF) Serving Texas, through its partnership with Blue Cross Blue Shield and the Healthy Kids Healthy Families Grant, is making great strides in expanding health services in rural Texas areas where resources are limited, and quality healthcare is a challenge. This partnership has supported NKF’s KEEP (Kidney Early Evaluation Program) Healthy Program’s effort to screen more than 3,000 Texans for kidney disease.

The free KEEP screenings, the centerpiece of NKF’s fight against kidney disease, also include preliminary medical consultation and educational resources. BMI and blood pressure checks, along with urine testing, help to identify those at risk.  In Southeast Texas, bilingual resources and a follow-up care coordination network are provided to make it easier for residents to take control of their health and the health of their families.

NKF’s presence and impact in South Texas and other communities throughout the state, will be further enhanced by the recent collaboration with Caring Foundation of Texas.  Through this partnership brought about by Blue Cross Blue Shield Texas, NKF was granted the use of a CareVan for its screening and educational efforts around the state. The CareVan enables travel, medical supply storage and service to Texas communities that is accessible, affordable and possible.  NKF is now able to reach populations and communities it could not have reached prior to its partnership with Blue Cross Blue Shield Texas.

The fight against kidney disease is an uphill journey.  The NKF, working with its partners, continues to go where it is most needed to ensure that all Texans have the benefit of good health and great healthcare.

To learn more about our partnership with Blue Cross Blue Shield Texas, please visit   https://connect.bcbstx.com/in-the-community/b/weblog/posts/bridging-the-gap-in-kidney-care

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Leading the Charge for Kidney Health through Local Community Partnerships

By Lesa-Kaye Holtham, MPH – Government Grants Director, National Kidney Foundation

Public health is defined as the science of protecting and improving the health of people and their communities through organized efforts and informed choices of society, organizations, public and private, communities and individuals[1].  Partnerships, coalitions, and collaborations formed through shared interest are necessary for to address any public health problem[2]. As the largest, most effective and longstanding organization, in the United States, fighting kidney disease, the National Kidney Foundation (NKF) connects communities of kidney patients and their families, policy makers, healthcare professionals, academic research institutions and other stakeholders. NKF’s 37 Field Offices are integral to organization’s mission. NKF’s local offices lead the charge in increasing awareness about kidney disease through action, education, and accelerating change that improves kidney health in communities across the country.


The National Kidney Foundation’s local offices improve kidney health in communities across the country through partnership efforts that bring kidney health education and programs to the general public, kidney patients, family members, caregivers, as well as health professionals.

During the first full week of April each year, the American Public Health Association (APHA) brings together communities across the United States to observe National Public Health Week (NPHW) as a time to recognize the contributions of public health and highlight issues that are important to improving our nation’s health. One of this year’s themes – healthy communities- reinforces that an individual’s health, longevity and well-being are connected to their community, the places they live, learn, work, and play. In recognition of NPHW and its focus on healthy communities, we are pleased to bring a series of blog posts of how NKF’s offices across the country are leading the charge for kidney health action in local communities through both formal and informal partnerships. This week’s blog posts will feature four (4) of NKF’s local offices (Serving: Greater New York, Texas, New England, and Southern California/Nevada) to highlight our focus on reaching communities, particularly those at highest risk for kidney disease, as well as working across sectors and non-traditional partnerships.

Through the Leading the Charge for Kidney Health blog series, we are proud to feature NKF’s local offices to further highlight the importance of their work in bringing the organization’s mission to communities as well as serving as catalysts for collective action that improves kidney health for all.

[1] Winslow, Charles-Edward Amory (1920). “The Untilled Field of Public Health”. Modern Medicine. 2: 183–191.

[2] Shortell SM, Zukoski AP, Alexander A, et al. 2002. Evaluating partnerships for community health improvement: Tracking the footprints. Journal of Health Politics, Policy, and Law 1: 49–91.

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A Successful End to a Successful Kidney Patient Summit!

By Troy Zimmerman, Vice President for Government Relations

Our 6th Annual Kidney Patient Summit is poised to be our most successful advocacy day yet.  With more than 100 advocates visiting more than 180 legislators’ offices on Capitol Hill sharing stories and priorities, I have no doubt that we moved the needle on promoting our legislative priorities.  Last year, about two dozen legislators became co-sponsors of our legislation immediately after the Summit.  In the week since March 5th, we have already had 12 new Representatives and a Senator become co-sponsors of the Living Donor Protection Act because of our advocates.


Advocates attending the 6th Annual Kidney Patient Summit

Thank you to our advocates who took time off work and school, time away from their families, and those who walked themselves to exhaustion to convince as many legislators as possible about the need to support better policies for kidney patients and living organ donors. I hope that you were also able to make show your support for their hard work by writing and tweeting your legislators that they need to support passage of the recently introduced Living Donor Protection Act (H.R. 1224/S. 511), legislation to extend Medicare immunosuppressive medication coverage indefinitely; and increased appropriations funding for kidney disease programs and research.

As Congressman Mullin (R-OK) said last year, “Personal stories really make a difference. I want to thank you for coming here and sharing yours,” said Rep. Mullin. “You sometimes come to the Hill and you leave thinking, ‘What did I really do except waste time?’ But you didn’t because you touched a lot of people’s hearts. You make my job much easier.”

I also want to thank our special guests this year.  A special thank you to Health and Human Services (HHS) Secretary Azar for joining us on Monday to inspire our advocates and talk about the importance of reforming kidney disease policy.  We were proud that he chose our Summit as the place to tell the kidney community about HHS’ goal of changing the Medicare reimbursement payment methods to encourage a shift towards home dialysis and kidney transplants for end stage renal disease (ESRD) patients. He discussed how HHS is working to achieve better and more cost-effective ways to deliver dialysis to people in times of emergencies, such as natural disasters. He also spoke about the importance of programs such as the National Living Donor Assistance Center (NLDAC) program and the KidneyX innovation program that are helping to meet the needs of the kidney community.


HHS Secretary Azar and National Kidney Foundation CEO Kevin Longino

Thank you to Angelica Hale, NKF’s Kid Ambassador and kidney transplant recipient, and her family for joining us again this year.  We were proud to see the difference she made in her meetings with members of Congress and appreciated that she was able to join us for the Congressional Reception again.  Like 2018, our advocates were thrilled and amazed by her performance and clamored to have the opportunity to meet her!  Finally, I want to thank a long-time Kidney Advocacy Committee member and 2018’s Miss New York, Rahmeka Cox.  Joined at the Summit by her mother and fellow advocate, Andrea, they met with more than a dozen legislators and their staff.


Advocates from the New York delegation before a Senate meeting

I hope that what our advocates did here will convince you to become empowered as well and become an advocate for kidney patients, living organ donors, and their caregivers too.  Email me at NKFadvocacy@kidney.org so that we can talk to you about different ways that you can make a difference too.

Do you want to learn more about the Summit?  Visit the Summit’s website and @NKF_advocacy on twitter to learn more about the event, view legislative materials, see photos from this year, or write your legislators.

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Patients As Partners In Research: How NKF and the Patient Centered Outcomes Research Institute (PCORI) are changing the face of kidney disease research 

By Lesa-Kaye Holtham, National Kidney Foundation Grants Director

The Patient-Centered Outcomes Research (PCORI) is a nonprofit organization authorized by Congress in 2010 to fund research that can help patients and those who care for them make better-informed decisions about the healthcare choices they face every day.  PCORI often characterizes work a “research done differently.” This means PCORI emphasizes that research should engage patients as true partners throughout the entire process, from developing the research study to dissemination of the findings. Patient engagement is also embodied throughout PCORI’s practices, from the Institute’s Board of Governors to its funding application review process and the way its funded studies are conducted. PCORI has set the bar, and it’s an appropriately high one, for patient engagement.

Pcori Annual Meeting 2018 - KAC & PCORI staff

Caption: Caption: NKF’s kidney patient advocate Bobbie Reed and Greg Martin, PCORI’s Deputy, Chief Engagement and Dissemination Officer, discuss the need for kidney research that answers important questions for patients, family members and caregivers.

Patient-centered chronic kidney disease research is needed to help patients and healthcare professionals answer many questions they have about the treatment options that best match patients’ individual life goals, preferences and values.

Since 2012, PCORI has funded 18 research studies that will help patients, family members, and health care professionals make better-informed decisions in treating kidney disease and thus improve healthcare delivery and outcomes. PCORI has also funded additional projects where kidney disease is among several important conditions studied, as well as additional projects designed to better engage the kidney disease community in research. The National Kidney Foundation leads the charge in increasing awareness about kidney disease through action, education, and accelerating change. A key piece of that mission is advocating and participating in research that answers the questions most important to patients with kidney disease and those who care for them. As we mark National Kidney Month, we reflect on our continued commitment to this critical patient-driven research, including our growing and meaningful relationship PCORI.

Because NKF is a voice for patients and professionals, a source for education, and a connection for all stakeholder groups, it made sense for us—and our members—to form partnerships with PCORI.

Patient-Centered Outcomes Research Stakeholders’ Conference

NKF shares PCORI’s dedication to patient-centered research. Our review of existing patient-centered research culminated in the first Patient-Centered Outcomes Research Stakeholders’ Conference on kidney disease, in April 2017. Patients, caregivers, clinicians, academics, and other stakeholder groups came together to identify kidney disease-related research topics, brainstorm how to alleviate barriers to including patients in research and make connections to work together on future research projects.

“The conference truly embodied how patients and researchers can work collaboratively to address questions most important to kidney patients. Over the course of a year, patients and stakeholders were true partners throughout all phases of this conference project: working together in the planning of the activities, shaping the agenda, and leading the conference activities, as well as disseminating the findings,” says Derek Forfang, a kidney disease patient and co-chair of the stakeholders’ conference.

To maximize participation, we held the stakeholders’ conference—which included 100 participants from 17 states—in conjunction with our Spring Clinical Meetings, NKF’s premier conference for kidney health professionals. In a striking change from most research discussions, patients really drove the conversation. Researchers sat back, listened, and asked follow-up questions. Patients shared their perspectives and helped shape research questions. The group came to a consensus on top kidney disease research priorities, the main barriers to completing kidney disease patient-centered outcome research, and the best solutions to remove those barriers. More details are in the conference summary.

“This is the beginning, turning discussions into action to change the landscape,” Forfang says.

More NKF Initiatives to Promote Kidney-Related PCOR

Since the conference, NKF has already applied many learnings and insights to engaging patients in all aspects of research. For example, in 2018, NKF provided a $40,000 Patient-Centered Outcomes Research Grant, focusing on top kidney disease priorities identified by the patients attending the conference. The 2018 NKF Patient-Centered Outcomes Research Grant was awarded to Daphne Knicely at Johns Hopkins University School of Medicine for a pilot study on patient education interventions to improve health literacy among kidney patients.

Pcori Annual Meeting 2018 - KAC

Caption: NKF’s kidney patient advocates Curtis Warfield, Bobbie Reed and David White at the 2018 PCORI Annual Meeting.

Another PCORI-funded NKF project is The Home Dialysis Controversies Conference Project, which over the course of two years has brought together a multi-stakeholder group of patients, clinicians, caregivers, researchers, health payers, and healthcare industry representatives to facilitate the development of research designs that aim to measure home dialysis quality as well as interventions to address the barriers to maintaining dialysis treatment at home. Watch video highlights from the 2017 Home Dialysis Controversies Conference HERE.

In December 2018, the NKF held this project’s second conference, to present project designs from three multi-stakeholder working groups that were established after the 2017 Home Dialysis Controversies Conference. The working groups presented projects that could overcome barriers to getting, or keeping, patients on home dialysis, including overcoming the barriers to training and support for care partners. The project team and working groups found that creating opportunities for mentorships among patients and caregivers and education of all kidney professionals and patients are key to successful home dialysis. Based on the presentations and feedback from the conference attendees, the NKF will lead a new initiative to raise awareness about home dialysis, find ways to encourage home dialysis as a first choice for treatment for kidney failure and prevent home dialysis patients from quitting treating at home because they are burned out.

We are also contributing to a number of PCORI-funded research studies that will improve the lives of those impacted by kidney disease and those who care for them, including a project to reduce disparities in kidney care for underserved minority populations. That study, Comparing the Effectiveness of House Calls and Peer Mentorship to Reduce Racial Disparities in Live Donor Kidney Transplantation, led by James R. Rodrigue, PhD, at Beth Israel Deaconess Medical Center and the NKF, will compare interventions for helping African American patients increase their chances of a living donor kidney transplant.

The House Calls program, an educational session delivered in the patient’s home, will compare its effectiveness against education traditionally provided in transplant centers in increasing living donor kidney transplants among African Americans living with kidney disease who are eligible for a kidney transplant. The study will also test a combined House Calls and Peer Mentorship approach that matches patients with a someone who received a living kidney donor transplant to provide emotional support and guidance throughout the transplant process. Results from this research will help doctors and clinic administrators determine the best ways to improve African American patients’ chances of getting a living kidney donor transplant.

At the National Kidney Foundation, we serve not only to improve the lives of the millions of Americans with kidney disease, but also to reduce the burden on future patients. Partnering with PCORI to advance patient-centered research is critical to accomplishing these goals.

See PCORI’s blog and website for more information: https://www.pcori.org/blog/partnering-patient-centered-research-people-kidney-disease

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