Looking Back at a Successful 2018

By Troy Zimmerman, Vice President of Government Relations

As we all reflect upon what to be grateful for in the New Year, we at the National Kidney Foundation are grateful for YOU!  Thanks to your support throughout the year, we’ve achieved so much to help our kidney patient community.  Without the support you have given us by meeting with legislators, writing and tweeting them, and spreading the word about efforts to improve kidney disease policies, none of this would have been possible.

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Kidney Advocacy Committee members on Capitol Hill at the 2018 Kidney Patient Summit

Thanks to your messages and meetings with legislators at national and local levels, we’ve accomplished a lot in 2018.  Here are ten of those achievements:

  1. Nearly 90 co-sponsors for the Living Donor Protection Act (H.R. 1270) in the U.S. House of Representatives, more than twice as many as the previous Congress;
  2. We collaborated with Rep. Herrera Beutler (R-WA) to secure a U.S. Department of Labor opinion letter clarifying that living organ donation is included in Family and Medical Leave Act (FMLA) benefits. Therefore, anybody who is eligible for FMLA can donate a kidney without the fear of losing their job;
  3. We successfully advocated for the passage of versions of the Living Donor Protection Act in Idaho and New York;
  4. We advocated for the passage or defense of state laws offering tax credits and deductions for expenses related to living organ donation and for companies offering paid leave to living organ donors in Arkansas, Maryland and Colorado;
  5. Supported legislation, signed by the President, to improve our veterans’ access to transplants;
  6. Hosted approximately 100 kidney patient advocates from five organizations in Washington, DC for 5th Annual Kidney Patient Summit. Patients, living donors and their families educated Congress about their stories and needed changes to improve kidney health and patients’ lives;
  7. Sent more than 18,000 letters and tweets to Congress and state legislatures. These include messages supporting the Living Donor Protection Act (H.R. 1270), to promote early detection and treatment (H.R. 3867), and federal funding for CKD research and programs;
  8. Collaborated with the U.S. Department of Health and Human Services Million Hearts Initiative to integrate evidence-based best practices for improving early detection and treatment of CKD into efforts to improve hypertension treatment;
  9. Grew our advocate network to nearly 122,000 people;
  10. Led efforts to protect dialysis patient access to care in California by defeating Proposition 8, leading to 60% of Californians to vote against this initiative;
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The signing of Idaho’s Living Donor Protection Act: (Left to right:  Kat Bowen, National Kidney Foundation Idaho/Utah Chapter; Marty Durand; Sen. Cherie Buckner Webb, sponsor; Gov. Butch Otter; Alex Fox, National Kidney Foundation; Rep. Sally Toone, co-sponsor; Rep. Janie Ward-Engleking, co-sponsor; Donna Yule)

With the New Year comes a new Congress and new state legislatures.  Did you know that nearly a quarter of Congress and state legislators are new?  The vast majority of them have limited knowledge of kidney disease and its impact on 30 million Americans, like you and your loved ones.  This is why we will continue to need your help in 2019.

We continue to need your help in recruiting your friends and family to become advocates and support critical policy initiatives that directly affect you, but also to tell us how kidney disease has impacted your life.  In January, we will be asking you to write your legislators, new and old alike, to educate them about kidney disease and tell them to support better policies for the kidney community.

I look forward to working with you to accomplish even greater victories for kidney patients, living organ donors and their families in 2019!

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My Experience at the 2018 NKF KDOQI Home Dialysis Controversies Conference

Dolores A. McGrath, CHES®, NKF Advocate, Former Home Hemodialysis Carepartner, Living Donor

On November 30, 2018, I was very fortunate to have been in attendance once again for the NKF KDOQI Home Dialysis Controversies Conference. Last year I was a bit intimidated not knowing what to expect and feeling insignificant compared to so many others in attendance, but it turns out that my input was taken very seriously. This year I had the great pleasure of seeing some issues being addressed regarding the care partner of a home dialysis patient and watching those wheels in motion to make improvements.  Addressing the needs of the home care partner (emotional, financial, stress) is a large part of helping to improve the number of patients doing dialysis treatments at home and helping them stay at home instead of spending multiple hours several days a week in a dialysis center.

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Left to Right – Nieltje Gedney, Amy Bassano, Caroline Wilkie, Vanessa Evans, Erich Ditschman

Some people who assist home dialysis patients are care partners in that they may be required to perform a small portion of the duties, whereas some are truly caregivers in that they carry a very heavy load of responsibilities even doing all of the cooking, housecleaning, driving, all of the dialysis treatments and such.  Regardless of the level of involvement, these home care partners may find themselves under a great deal of stress, and they may even keep it to themselves leading to care partner burnout.  If the home dialysis patient does not have the support they need, they may find themselves unable to keep doing treatments at home, not to mention the stress with which a caregiver/care partner may be left to cope with possibly on their own.

Hearing stakeholders discuss statistics and new ideas that have been developed since last year was thrilling and reading the article in the American Journal of Kidney Diseases titled Exploring Barriers and Potential Solutions in Home Dialysis: An NKF-KDOQI Conference Outcomes Report on the plane ride on the way home brought some tears of joy to my eyes both as a former care partner and as a public health professional.  The individuals that put this report together not only listened, but they acted.

I came to the conference this year to hopefully contribute what I could from personal experience as a care partner for my husband who was on home hemodialysis. Additionally, I was able to use my educational background in health education to convey how the care partner may need help from the patient’s healthcare team and may want help, but for reasons that will be unique to each person, may not be forthcoming about it.  I spoke into the microphone a few times feeling my throat tighten and my heart pounding so hard I thought it was going to crack a few ribs, but I did it.  What I realized at this year’s conference was that my input may not be from the medical side, nor did I write a report based on previous data and research, but what I am able to add comes from experience.  I lived it – the good, the bad, and the ugly.  What I and others like me can offer is the missing pieces to the puzzle of why more patients are not doing home dialysis. I can offer insight that may not exist in medial books, medical journals, or other evidence-based research yet available.

The entire experience as a home dialysis caregiver showed me what I am capable of achieving, such as overcoming a fear of needles and blood, and inspired me to go back to university to earn a degree in Public Health Promotion/Health Education and become an advocate, so I am rather passionate about the entire world that is dialysis and especially home dialysis.

Being a member of the NKF’s Kidney Advocacy Committee and being invited to take part in the NKF KDOQI Home Dialysis Controversies Conferences has allowed me to share my experience in an effort to help others be successful and supported on home dialysis in the hopes that their lives will be that much better moving forward.  Attending conferences like these allows me to continually learn, and I thank the NKF for the opportunities they have and continue to provide me.

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Inspiring Our Youth To Be Advocates!

Earlier this summer, while speaking with one of our Kidney Advocacy Committee members, Robin Kahn mentioned that she had brought advocacy education into her classroom.  She taught a unit on advocacy and asked one of her Congresswoman’s staff to visit her class.  We often overlook how lucky we are to have such remarkable access to our policymakers and those who do advocate, focus their attention on their legislators.  Seldom are young Americans taught about how they can (and inspired to) “be” the change that improves our country’s policies.

Thinking of this marvelous class project, I asked her to share her story with our readers in the hope of inspiring others to do the same.

Andrew Fullerton                                                                                                                                  National Kidney Foundation

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During the 2017-2018 school year, I introduced a service learning curriculum to our 6th & 7th graders.  Over the course of the year, our students learned about homelessness, poverty, environmental issues, inclusion, caring for the elderly and finally a unit on advocacy. The lenses through which we looked at each issue was how the issue affects our towns in the Greater Boston area and why they are important to the Jewish community. The year culminated with students forming groups based on the issues they were most passionate about and then presentations to Wade Blackman, District Director for Policy in the office of Rep. Katherine Clark.

The idea to reach out to Wade came from the advocacy work and fly-ins that the NKF organizes each year in DC for kidney patient advocates.  I’ve been honored to participate in the Summit for the past five years, and each year I am moved to tears by how accessible our elected officials are.  Is there any place else in the world where a civilian can just walk into their elected officials’ offices and talk to them about the issues and legislation they are passionate about?  My friends from Israel are always astounded that in American our government buildings and offices are open to the public.

It was this past March during a meeting with David Bond in Rep. Katherine Clark’s Washington, DC office. As my fellow advocates and I spoke with him about the legislation, like the Living Donor Protection Act (H.R. 1270) and early detection and management of kidney disease, it occurred to me that someone in the local office might be able to meet with my pre-teen students as part of our advocacy unit.  David put me in touch with Wade, who was more than willing to meet with our students, listen to their passions and answer their questions.  Our students were captivated and eager to spend more time with Wade.  Alas, the hour went too fast.

During that presentation, because of my young students’ curious questions, I learned that Wade and his family live in the same neighborhood as many of them. We had an immediate connection.  This summer, when came time to set up local meetings to talk about our policy priorities, I knew that reaching out to Wade would be super easy, as we were already on a first name basis. I shot off a quick email and requested a meeting with him or Rep. Clark about kidney patient issues. In that email, I shared that the Living Donor Protection Act was important to me, as my father and I are both living donors to my mom.  Having already established a relationship with Wade, made our meeting super easy.

I am grateful to Wade for his willingness to engage with my students and myself.  I look forward to seeing my students follow in my footsteps, advocating to improve policy on issues they care about because of his time speaking with them.  I also look forward to seeing how my own efforts make a difference with Rep. Clark adding herself to the list of co-sponsors for the Living Donor Protection Act, taking it one step closer to passage.

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Success! New Kidney Disease Funding

By Troy Zimmerman, Vice President of Government Relations

Each year, the National Kidney Foundation, our allies, and our supporters advocate for increased funding for kidney disease research and programs in Congress.  We are proud to tell you that the work of the kidney disease community has paid off again this year!

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On September 28th, President Trump signed the FY2019 Labor, Health and Human Services and Education appropriations bill, which maintained or increased funding for several priorities for our community.  It increased funding for:

  • The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) by $59 million to $2 billion;

And maintained FY2018 funding for:

  • The Centers for Disease Control and Prevention’s (CDC) Chronic Kidney Disease Program at $2.5 million;
  • The Department of Health and Human Services Million Hearts Initiative at $4 million;
  • The Health Resources and Services Administration’s (HRSA) Bureau of Primary Care at $1.627 billion; and
  • HRSA’s Division of Transplantation at $25.5 million.

If you would like to show Congress the appreciation of the kidney disease community, please consider writing your legislators!

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Patients Engage in FDA Meeting to Spur Drug Development in Transplantation

By: Kelli Collins, VP Patient Engagement and Tonya Saffer, VP Health Policy

On September 27th and 28th the National Kidney Foundation Kidney Advocacy Committee Members participated in the Food and Drug Administration (FDA) meeting, “Evidence-Based Treatment Decisions in Transplantation: The Right Dose & Regimen for the Right Patient/Individualized Treatment”.

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Left to right: Shanon Woodward, Kelli Collins, Haley Newkirk, Brandy Webster, Alex Barrios

Kidney Advocacy Committee members Alex Berrios, Brandy Webster, and Haley Newkirk provided the patient perspective presenting as part of a panel entitled:  The Patient Perspective on their Organ, Treatment and Hopes for Future Management (changes, improvements). 

The National Kidney Foundation has collaborated with the FDA to bring the patient voice to the table for the past several years and is encouraged to see FDA continue to prioritize patient engagement in the process of drug development.

This year, NKF’s kidney transplant recipient advocates, along with two lung recipients, shared their individual experiences and challenges with transplant, side effects, and immunosuppressant medication.  “I enjoyed being able to be a voice at the table, speaking on behalf of my fellow kidney transplant recipients, so that those in charge of drug development hear directly from the people the drug is intended to help. I also enjoyed learning about the upcoming adherence tools that are being discussed,” Alex Berrios.

After presenting their individual experiences, patients engaged in an open panel and Q&A session.  Each recipient’s story was unique but also shared many common threads.  All were incredibly grateful for how a kidney transplant changed their life for the better.  Each patient struggled with side effects and complications to varying degrees.  Some common side effects of the immunosuppressant medication were insomnia, skin cancer, cognitive or memory changes, and weight gain.  They also shared challenges with adherence and high cost of medications.

“As a patient, I learned a lot more about how the drug development process works and how the research and development challenges in the organ transplantation field may affect my care,“ Haley Newkirk says, “I hope that the conversations among patients, regulators, physicians, and researchers will lead to better and more individualized treatments in the future.”

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Left to right: Alex Barrios, Brandy Webster, Haley Newkirk, Shanon Woodward

Also, in attendance was National Kidney Foundation board member and transplant surgeon Matthew Cooper, MD. The meeting was the result of a Public-Private Partnership created in April 2017 and founded by the American Society of Transplantation, the American Society of Transplant Surgeons, the Critical Path Institute and the FDA.

“The Transplant Therapeutics Consortium and the meeting today are shining examples of how the FDA and stakeholders in transplant, especially our patients, are coming together and appreciating we all have a common goal in developing safe and innovative medications and interventions to expand opportunities for transplantation as well as increase the life years gained for those fortunate to receive the Gift of Life,” said Dr. Cooper.

Longtime National Kidney Foundation volunteer and prominent epidemiologist Josef Coresh, MD shared research and findings from a multi-year meta-analysis that examined the largest compilation of data ever collected on chronic kidney disease (CKD), first presented at a workshop hosted by the National Kidney Foundation in March 2018. The joint workshop held with the FDA, European Medicines Agency (EMA) and NKF examined how measuring biomarkers could expedite clinical trials and spur innovation in delaying or preventing progression.  Dr. Coresh shared this data and discussion at the FDA meeting as it may also have applications to developing drugs targeted at preventing transplant rejection.

This FDA meeting highlighted the importance and critical need for innovation in transplant and brought together clinical, research, and patient expertise to help achieve the goal of better treatments for those living with kidney disease.  The National Kidney Foundation is grateful for the work that AST, ASTS, C-Path and the FDA are doing to spur new drug development in transplantation. The input and perspective of transplant recipients was central to the discussion and will be used to further efforts to align drug development with goals that are most important to patients.

Share your experience as a transplant recipient with the FDA. Send comments via this link:  https://www.regulations.gov/document?D=FDA-2018-N-3010-0001 and click Comment Now!   Comment period will be open until November 19th.

Learn more about the conference and watch a recording of the webinar here: https://www.fda.gov/Drugs/NewsEvents/ucm605761.htm

Related information: 

Conference on End Points in Clinical

Organ recipients share their experiences with FDA to promote innovation in immunosuppressive therapies 2016 Meeting

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Job Security for Living Organ Donation Guaranteed Under FMLA!

By Kevin Longino, CEO of the National Kidney Foundation and kidney transplant recipient

I am delighted to share wonderful news with the kidney disease community.

On August 28th, the U.S. Department of Labor issued an opinion letter on living organ donation which protects the job security of living donors who are eligible under the Family and Medical Leave Act (FMLA). This important clarification ensures that eligible employees who seek to use time off to donate an organ to help save another’s life are entitled to unpaid, job-protected leave.

This clarification was a direct result of efforts by Representative Jaime Herrera Beutler (R-WA) through her work on the House Appropriations Committee.  Working with the National Kidney Foundation, Rep. Herrera Beutler developed language that was included in the Committee Report to the Fiscal Year 2019 Appropriations Bill for the Departments of Labor, Health and Human Services, Education and Related Agencies.  The Report Language directed the Department of Labor to issue a clarification on FMLA for living donation.

We thank Rep. Herrera Beutler for making this  possible. While this is a huge victory for patients and organ donors, we need to keep advocating for the Living Donor Protection Act (H.R. 1270) to provide protection from discrimination in the pricing or availability of life, disability or long-term care insurance.   Please write (or tweet) your federal legislators today, if you have not already done so, to ask them to become a co-sponsor of H.R. 1270.

1For more information on FLMA visit the U.S. Department of Labor website.
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Three weeks to speak to your legislators

By Andrew Fullerton, National Kidney Foundation

Throughout the year, many of our readers have been invaluable advocates by writing, tweeting and calling your legislators in support of the Living Donor Protection Act; H.R. 3867, legislation to promote the early detection and treatment of kidney disease; and other state-specific legislation.  This August, we ask you to join many of your fellow advocates who have met with their Members of Congress and make another step forward for kidney patients.

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Left to Right: David Salomon, Sara Booth, John Hyde, Gail Salomon, Congressman Lance, Judy Rosenstein, Abe Rosenstein and Meg Gilmartin

During the next three weeks, your legislators will continue to be home meeting with their constituents; this mean you!  While they are in your hometowns speaking at town halls, meeting with civic organizations, and attending county fairs and parades take this opportunity to speak to them.  You can reinforce the message we share with legislators by telling them about your kidney disease story and that they need to support kidney patients in Congress!  Linking your story and your face to kidney disease in their minds can make all the difference.  If you need assistance, materials or to report a meeting with your legislators, email me at nkfadvocacy@kidney.org!

Thank you for your continued support in making advances to kidney disease policy possible.

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A Patient Perspective on Bayer Pharmaceutical’s First Clinical Trial Patient Retention Summit

By Cari Maxwell, Kidney Advocacy Committee member

It was my privilege to be a guest speaker at Bayer Pharmaceuticals’ first Clinical Trial Patient Retention Summit in June 2018 near their headquarters in New Jersey. Bayer is constantly engaged in new research, with the hopes of developing additional treatment for patients that are managing various healthcare conditions. Embracing a patient-centric approach to disease research, the pharmaceutical company conducted a training meeting for their US and Canadian teams on two of their current research programs in Diabetic Kidney Disease, which hope to delay disease progression in patients at risk of losing their kidney function due to their history of diabetes and also demonstrate a risk reduction for cardiovascular events.

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Through my role on the NKF Patient Advocacy Council, I met with Bayer’s clinical team to share my personal experience participating in a non-Bayer clinical drug trial yet also connected with kidney disease. Bayer saw the value in having an actual patient that had participated in a long-term trial speak to the group on what it is like to be a clinical trial patient. Their strong desire to help the rest of the Bayer team understand and reflect on the experiences of clinical trial participants was evidenced by the significant focus of the Summit specifically on patient retention means and methods.

In my time addressing the team, I placed a significant emphasis on trial leaders helping trial participants understand their role in the health community at large. When a patient enters a clinical trial program it can be overwhelming between the lengthy informed consents, getting adjusted to a new medication, and managing the frequency of in-clinic visits. When my own trial drug gained its FDA approval in April of this year, I received a lot of positive feedback, congratulations, and even sincere appreciation from patients and caregivers alike. I admitted to the Bayer team that it wasn’t until this approval and what followed for me personally that I realized I had a significant part in doing for others what they could not do for themselves. While I knew there was greater impact beyond my own health and the potential for others in the future to receive the drug, the FDA approval brought that more into focus. From a retention perspective, helping patients understand the critical role they play in a clinical trial may help retain those patients who could be on the fence about ending their study participation before a study is completed, and could help get those patients through difficult moments in their trial participation

In the end, it was a most rewarding experience to share my passion for clinical research, and to have the opportunity to talk about my own health journey. For me, my health story is incomplete without finding ways to turn my challenges into positive outcomes for myself and others. It was a great collaborative experience and I am glad I could contribute to the Retention Summit to help advocate for patient–centric approaches.  Seeing patients’ needs being placed at the forefront of pharmaceutical industry decision-making is to be applauded, and I look forward to continuing the conversation in the pharma community to further enhance the patient experience.

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Volunteering With The Local NKF Office On A Walk

By Curtis Warfield, Kidney Advocacy Committee member and transplant recipient

The National Kidney Foundation’s Kidney Walk is an important event in every community that is fortunate to host one.  Not only does it raise funds for research programs; it also brings awareness and education to participants and the general public and supports the kidney patient community. I participated in my first Kidney Walk with my family and donor two years ago (2016) when I was six months post-transplant. Last year, I stepped it up a bit and captained my own team with team shirts and the works.

While our Walk in Indianapolis has been well attended and an overall amazing event, I felt something was missing.  Other major walks and runs hosted in the city have had a local or national celebrity – the mayor, governor, or some other high ranking public official – to help promote and open the event. This brought additional hype, press coverage and awareness for that event. I wanted to help bring this type of awareness for the Indianapolis Kidney Walk.

I contacted Margie Evans Fort, CEO of the NKF of Indiana, and asked if there was anything I could do to assist their office in soliciting this support from local officials. I informed her of my ideas and willingness to help. Margie was quick to say yes and offer her support as I started working towards this goal getting a local legislator to speak at the Walk.  I also requested a table at the Walk to have information on the legislative priorities, including the Living Donor Protection Act(H.R. 1270) & H.R. 3867 promoting early detection and treatment of kidney disease, letters for walkers to sign for their legislators and other information from the local office.

Additionally, I contacted my Kidney Advocacy Committee (KAC) Regional Leader and fellow Hoosier, Jim Myers, to inform him of my plans and bounce ideas off him. Jim, as always, was very supportive.

I had two main goals in mind as I embarked on this journey to engage our local leaders:

  1. Have several officials attend as speakers with their staff
  2. Have an Indianapolis Kidney Walk Day proclamation presented at the Walk.

To begin, I made of list of officials that included my congressman, neighboring congresswoman whose district covers the north part of the city, our two U.S. Senators, Governor, Mayor and the State Health Commissioner.  Then, I contacted the mayor’s office by phone to inquire about getting a proclamation. It wasn’t a difficult process. I had to included facts about the Walk, kidney disease, how many people are affected in the local area, and what the local office is doing to promote and bring awareness to kidney disease. After reviewing the materials submitted to the mayor’s office, the mayor granted a proclamation for Indianapolis Kidney Walk Day.

Next, I used contacts built through my involvement with KAC and official websites to reach out to the other elected officials on my list.  In each invitation, I included the details of the Walk, how the Walk affects the local community and how their appearance would be supportive to the kidney community. While most responded with a conflict of schedule and could not attend, several sent letters of support to be read at the Walk.

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Sen. Donnelly (D-IN) and Curtis Warfield

One elected official, U.S. Sen. Joe Donnelly (D-IN) originally wasn’t going to be able to attend; but asked to have a senior staff member in his place with his statement. Fortunately, four days prior to the Walk I received a message from Sen. Donnelly’s office that they had changed his schedule to allow him to join us at the event.  I was honored to serve as NKF’s contact person for the Senator on Walk Day.

We scheduled Sen. Donnelly to conclude the opening ceremony so I would could speak to him and leave some information with him and his team. With the help from the NKF Government Relation Team, I put together a package for the Senator that included information about the Living Donor Protection Act, H.R. 3867 and appropriations funding requests.

When he arrived, I greeted him and brought him to the stage before I made my remarks as a representative for KAC on our legislative efforts for the kidney patient community. The Senator gave his remarks, kicked off the Walk and greeted each of the walkers as they started on the route.  I was fortunate to also have my kidney donor with me, so I introduced her as I spoke with the Senator about the need to protect our living organ donors.  This caught his interest and he stayed to speak with her about living donation.

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The Walk was a wild success.  The Walk participants were excited to have one of their top legislators there and the local office was very excited to have the Mayor’s office proclaim Indianapolis Kidney Walk Day. The news coverage opened the Walk up to a broader audience. The Senator was able to get out and meet constituents with kidney disease. Also, I had another chance to meet with the Senator and his staff to remind him about our community’s policy needs.

Having our public officials appear at the Walk can bring greater awareness to the Kidney Walk and our local NKF offices. This expands NKF’s presence in our community and public officials are exposed to the kidney community, able to mingle with their constituents, and ultimately put faces with to kidney disease and hear their stories.  It also supports our efforts as KAC members to advocate for kidney disease policy and educate our legislators.

I am excited to share I have even been invited to be on next year’s Walk committee. I’m looking forward to building on this year’s success. Volunteering with the local NKF office has helped strengthen my relationship with them and improve the Walk.  I look forward to further improving this relationship, working with them on future projects and being able to support each other for the causes of kidney awareness, education, research, funding and policy advocacy.

 

 

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NKF Peers: Successful Model of Patient Engagement

By, Kelli Collins, MSW Vice President, Patient Engagement, National Kidney Foundation

The National Kidney Foundation was invited to Institute for Patient and Family Centered Care (IPFCC) 8th Annual International Conference to present on its signature Peer Mentoring program. We were honored to have our session, “Successful National Telephonic Peer Mentor Program: Review of National Kidney Foundation’s Peer Program,” chosen as the Celeste Castillo Lee Leadership Lecture at the conference in Baltimore in June.

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IPFCC aims to advance the understanding and practice of patient and family centered care and seeks to integrate these concepts into all aspects of healthcare in partnership with patients, families and healthcare professionals.  Celeste Castillo Lee was the chair of NKF’s Patient and Family Council for many years and also worked closely with IPFCC.   As a pioneer in demanding patient centered care and patient engagement, Celeste inspired much-needed change through her steadfast commitment and tireless efforts to advance the level of patient engagement.

Our session illustrated how our intuitive platform successfully supports patients by matching them with mentors who are inspiring their mentees to live well on dialysis and/or work towards ending their wait for a transplant.  My co-presenters were Risa Simon, NKF Peer Mentor and Advocate and founder of the TransplantFirst Academy, and Ashwin Patel, MD, PhD and Chief Medical Officer of InquisitHealth, our technology partner.  InquisitHealth technology allows us to match and connect pairs via a toll-free phone system as well as to track participation.  NKF’s Peers program has been successfully supporting patients since 2011 and continues to grow.  To date, NKF Peers has matched over 700 people seeking support with a peer mentor.

“The PeerStrong technology platform has the privilege of serving the NKF Peers Program – helping the program expand and scale, while producing tremendous improvements in the PAM, or Patient Activation Measure, scores for patients with chronic kidney disease,” shared Dr. Patel. “We are working together to connect the dots between peer support and measurable improvements in clinical outcomes.”

NKF Peers mentor, Risa Simon shared her experience as a mentee and mentor. “Most patients don’t realize that there is a world of support outside the walls of their doctor’s exam room. After informally discovering this hidden gem back in 2008, I looked for ways to pay it forward. When I learned of NKF’s Peers program I applied without hesitation. Since its inception, I’ve been sharing top notes from my journey with the goal of inspiring self-advocacy for better outcomes. It’s an honor and privilege to serve NKF’s kidney patient community in the spirit of hope to a better tomorrow.”

While attending other sessions at the conference, I learned how other healthcare groups were implementing best practices in patient engagement.  As a social worker I have always advocated for patients and family members and worked to empower patients to be their own best advocates.  In healthcare, it is wonderful to see that patient engagement is taking center stage — that the patients’ needs and experience are getting the attention they deserve.  Although great strides are being made, there is still work to do. The reality is, the ideal patient-centric experience is not the norm for most. However, conferences like these, where professionals and patients come together to share their experiences and best practices are invaluable to driving change forward.

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