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.

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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

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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.

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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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Proud of the Difference We Made Today

By Adam Jardine, Kidney Outreach Team advocate and NKF of Wisconsin Board Member

Today marked my first time attending the Kidney Patient Summit on Capitol Hill. I am so proud of the difference my fellow advocates and I made by educating our legislators and their healthcare policy staff about kidney disease and the challenges we all face.

I met with the offices of five members of the Wisconsin delegation and was heartened to see the support many of them showed. Even more heartening was witnessing the impact our stories and message had on those we met with and seeing the change it made in how they understood the devastating effects of kidney disease. To be able to offer them solutions to these problems that they are considering has been incredible.


With my fellow Wisconsin advocates in front of Congressman Mark Pocan’s office

As I walked through the halls of Congress, I was astonished to see so many of my fellow advocates, so easily identifiable by their orange scarves, walking between their own meetings and even dropping by those offices that we could not schedule meetings with so that they could make that extra effort to try to meet yet another legislator’s healthcare staff.  The energy and purpose was astounding and helped further my belief in the difference that National Kidney Foundation’s volunteers and advocates can truly make when we work together!

I was thankful to have the opportunity to hear the Secretary of Health and Human Services Alex. M. Azar II speak to us on Monday about the significant value in our patient advocacy efforts, the importance of helping the kidney community and the work that HHS is doing to improve outcomes for kidney patients and transform kidney care. I was honored that he chose our Summit to make his policy announcement about moving to a value-based healthcare system.

I was and remain proud to have joined the ranks of the many advocates in Washington today and hope to come back next year. I know, because of what I learned and experienced, that I will continue to advocate for better kidney disease policies at home and recruit as many of my friends and colleagues into our mission as I can.

As I post this, I am also excited that I will have the opportunity at the Congressional Reception this evening to recognize a long-time supporter of kidney patients and champion of the effort to extend Medicare’s coverage of immunosuppressive medication, Rep. Ron Kind from my home state of Wisconsin! He is truly an amazing man and friend. I will also get to meet Congressman Posey (R-FL), who will also be honored as a long-time supporter of our community and the National Kidney Foundation of Florida for more than a decade. He has always gone the extra mile to help us both in Congress and in Florida with fellow patients, something we greatly appreciate!

Thank you to everyone at the National Kidney Foundation for giving me the opportunity to become an advocate in Washington this week.

I hope that you also will become an advocate by writing or messaging you legislators on social media about your kidney disease story and about your support for our message.

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An Exciting Day Ahead at the Kidney Patient Summit

By Derek Forfang, Kidney Patient and Chairman of NKF’s Kidney Advocacy Committee

This morning, more than 100 advocates and I will be headed to Capitol Hill to tell our legislators in Congress that they need to do more to help kidney patients and living organ donors by passing legislation to protect living donors, ensure transplant recipients can afford their life saving immunosuppressive medications, and increase Appropriations funding for vital kidney disease research and programs.


With my fellow advocates

If you are reading this blog post, you understand what it means to have kidney disease or be an organ donor. You know the many challenges that we all face and how important it is to improve the policies that impact the lives of each and every person in the kidney community.

I am excited to be here each year, helping my fellow advocates become empowered by the National Kidney Foundation to make an enormous difference.  The Summit helps us learn how to convince our legislators to support us by giving us the tools we need to hold a policy discussion and improve how we communicate our stories.  It educates us about the policies that affect us every day and those we need to improve or protect.  Most importantly, it allows us to band together as a community to support each other when we meet those who determine the policy that impacts our lives.  It is amazing to see advocates go to their first meetings with their legislators, uncertain and nervous, and leave their last meetings confident that they can make a difference, eager to return home and continue spreading the message!

I am also proud to have an opportunity to help the National Kidney Foundation recognize outstanding advocates, like Jim Myers from Indiana, with the Richard K. Salick Advocacy Award.  This is the highest honor NKF bestows on advocacy volunteers who are leaders in making a difference for our community.  Jim has shown himself to be among the top advocates in the kidney community, helping educate many Hoosier lawmakers about kidney disease and policies. He is an advocate who has not let kidney disease slow him, only strengthen his resolve, since he was diagnosed over 30 years ago.

Jim with Kevin

Jim Meyers (left) with NKF CEO Kevin Longino

I look forward to seeing the success our advocates achieve over the next few weeks as legislators join in supporting those policy priorities so near and dear to our hearts. I hope you will join us by writing your legislators, tweeting or posting at them, and even applying to become an advocate for next year’s Kidney Patient Summit!

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Empowering Kidney Patient Summit Advocates to Make a Difference

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

I am excited to welcome more than 100 activists to Washington, DC to advocate on behalf of the 30 million Americans with kidney disease representing National Kidney Foundation, Alport Syndrome Foundation, PKD Foundation and American Association of Kidney Patients. Each one of our advocates has been impacted by kidney disease, either as a patient, caregiver, or living organ donor and know the enormous impact that it has on everyone in the kidney community.


In just a few hours, we will begin our advocate training program to and will present united front on Capitol Hill to encourage legislators to become supporters and co-sponsors on our vital policy priorities:

  1. The Living Donor Protection Act (S.511/H.R.1224) – Introduced last month, it would prohibit discrimination in life, disability or long-term care insurance for living organ donors and offer job security by codifying into law that living donation is covered by the Family Medical Leave Act.
  2. Extending Medicare coverage for immunosuppressive medication indefinitely – Transplant recipients need immunosuppressive drugs to maintain their kidney transplant and lower the risk of rejection. For kidney recipients who are not Medicare aged or Medicare disabled, Medicare covers immunosuppressants for only 36 months post-transplant, leaving many recipients struggling to find affordable coverage. Extending Medicare coverage for immunosuppressive medications indefinitely ensures patients have access to these lifesaving medications and enables more patients to consider a transplant.
  3. Increasing Appropriations funding for vital kidney disease research and programs – Increasing funding in Fiscal Year 2020 for: CDC’s Division of Diabetes Translation’s (DDT) CKD Surveillance Project; the Health Resources and Services Administration’s (HRSA) Division of Transplantation and Bureau of Primary Care; the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK); and KidneyX, the Kidney Innovation Accelerator.

Do you want to part of our Kidney Patient Summit this year and help our advocates be as successful as possible?  First, write your legislators about how important our policy priorities are for patients, their families and living organ donors. Briefly include your own story to show your legislators’ offices how close to home these issues hits you.

Then follow us on Facebook and Twitter, share our advocates’ messages and message your legislators to let them know how you feel and reach all of their followers!   You can get some tips and samples on our Summit social media guide!

Finally, we need more amazing advocates to help us promote improved kidney disease policies in Washington and around the country.  Join us as an advocate by emailing NKFadvocacy@kidney.org and telling us that you want to make a difference too.  Maybe you will be able to join us in 2020 when we come back to Congress to share our hard-fought victories!

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

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Defending Living Organ Donors In Kansas

By Sue Hendon, Board Member of the NKF of Kansas

Since the 1960s, when I heard President Kennedy say, “Ask not what your country can do for you, ask what you can do for your country,” I have been driven to help others.  I joined Volunteers in Service to America (VISTA), the Peace Corps, and later became a hospice nurse.


Sue Hendon testifying before the Kansas House Financial Institutions and Insurance Committee

Several years ago, I was shopping in Costco when I ran into my friend, Mary Long, and asked how she and her husband were doing. Mary shared that her husband, Dr. Edwin T. Long who suffered from CKD, needed to start dialysis, despite having managed his kidney disease for years through strict adherence to his kidney diet. I volunteered on the spot to be tested to see if I was a match, and I was!  Later that year, I donated my kidney to Ed, saving his life.

During mid-January, I was contacted by a staff member of National Kidney Foundation o see if I would like to testify before the Kansas House Financial Institutions and Insurance Committee to ask them to pass the Living Donor Protection Act (HB 2041).  According to a Johns Hopkins University Study, one-fourth of surveyed living donors who tried to obtain or change their life insurance experienced problems because of their decision to donate.  I leapt at the chance to once again do something to help keep my fellow living organ donors from discrimination with life insurance.

Testifying at the newly renovated Topeka Statehouse was an exciting and humbling experience. We arrived early which afforded me the opportunity to observe the Senate in progress and we settled into Committee Room 212-North.  I was able to speak with several representatives on the House Insurance Committee. One legislator told me he was newly appointed as a representative of a small Kansas town and he was excited to be part of creating positive changes in the state, like I was.  Joined by fellow advocates, I testified before the committee about the necessity of protecting living organ donors and removing barriers to donation.

I also had an opportunity to respond to questions from lawmakers, many of whom had no experience or knowledge of kidney disease.  This experience illustrates how much still needs to be done to educate our policymakers about the challenges and barriers we face as kidney patients and living organ donors.  I hope that you will join me in educating them, by talking to your legislators when you see them about your story and your challenges, and please don’t forget to write your legislators in support of Kansas’ Living Donor Protection Act.

Thank you to the House Insurance Committee, Ron and Julie Hein, John Monroe and the National Kidney Foundation for helping to move this legislation forward.  I was happy to see that the House Insurance Committee voted unanimously to approve the bill on February 6th, and I look forward to testifying before the Kansas Senate as well!


Left to Right: Mitch DePriest, Julie Hein, Ron Hein, and John Monroe

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