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 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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The National Kidney Foundation meets with Secretary Alex Azar of the U.S. Department of Health and Human Services to discuss Transforming Kidney Care.

By: Michael Choi, MD Immediate Past President of the National Kidney Foundation

In February 2017, shortly after President Trump’s inauguration,  The National Kidney Foundation declared that the “Trump Administration Will Know that CKD is a Public Health Priority” and we are excited to say that chronic kidney disease (CKD) is indeed a priority focus for the Administration.

On Friday February 1, The National Kidney Foundation along with other kidney organizations were invited to participate in a small roundtable discussion with Secretary Alex Azar to discuss opportunities to transform kidney care. In his opening remarks the Secretary stated that transforming kidney care and increasing access to transplantation was indeed a priority for him and for the President and that he wanted to hear directly from our organizations on opportunities to improve kidney care. On the Secretary’s list of discussions were key priorities of the National Kidney Foundation including new payment models to improve earlier identification of kidney disease to prevent and delay progression, improve treatment for advanced CKD including a home first approach to dialysis when a pre-emptive transplant is not possible, and increasing access to transplantation, including increasing the supply of kidneys by reducing the number of kidneys that are discarded.  The National Kidney Foundation has championed all of these priorities and developed actionable policy recommendations for improvements.

Secretary of Health & Human Services Alex M. Azar Round Table Discussion: Kidney Care Transformation

Left to Right: The Honorable Alex Azar, Secretary U.S Department of Health and Human Services; Tonya Saffer, Vice President, Health Policy National Kidney Foundation; Michael Choi, MD Immediate Past President, National Kidney Foundation; Adam Boehler, Deputy Administrator for Innovation & Quality and Director of the Center for Medicare and Medicaid Innovation

The National Kidney Foundation, working with multi-disciplinary healthcare professionals and kidney patients, developed the CKDintercept alternative payment model, which incentivizes primary care and nephrology practitioners to work together to improve early detection and  treatment to delay progression, ease transitions of care for patients who progress and educate patients early on opportunities for a kidney transplant or home dialysis. During the meeting the National Kidney Foundation encouraged the Secretary to adopt these recommendations as it considers new value-based payment models for kidney care; and we sincerely appreciate learning that the Secretary is aligned with these goals.

The National Kidney Foundation was also able to share recommendations from our Home Dialysis Controversies Consensus Conference Series held in November 2017 and November 2018, to study and remove barriers to home dialysis.  Patients and health care professionals worked together to develop many recommendations, which included changes to physician payments and suggested changes to Medicare reimbursement for education to increase opportunities for patients to learn about all of their treatment options once they experience kidney failure.

The National Kidney Foundation also shared policy and reimbursement recommendations to reduce the number of kidneys discarded that could have successfully been transplanted giving the patient a longer, higher quality of life than they would have on dialysis. These recommendations came from the National Kidney Foundation’s May 2017 Consensus Conference to Decrease Kidney Discards, which included patients, organ procurement organizations, transplant programs and nephrology practitioners and were published by the Journal Clinical Transplantation online first in October 2018. More than 3600 kidneys were discarded in 2016 and it is estimated half of those kidneys could have been successfully transplanted underscoring the need for significant reforms.  We were pleased to hear the Secretary mention kidney discards and state that HHS is exploring opportunities to increase the supply of kidneys so that more patients can benefit from this ideal treatment.

The National Kidney Foundation also voiced our strong support for expanding programs to provide reimbursement of expenses to living donors incurred over the course of donation. Specifically, we thanked the Secretary for the Health Resources & Services Administration’s upcoming pilot to cover lost job wages for living donors that is expected to launch this Summer and we voiced our support for expansion and additional funding for that pilot to cover more living donors and to expand programs, like the National Living Donor Assistance Center (NLDAC), to cover other out-of-pocket expenses such as child and dependent care.

The National Kidney Foundation is optimistic for the future of kidney care and are grateful to the other kidney organizations, American Association of Kidney Patients, American Society of Nephrology, Dialysis Clinics, Inc, and the Renal Physicians Association who also contributed recommendations and emphasized shared goals during the meeting. In addition, to the Secretary, NKF would like to thank Assistant Secretary for Health Admiral Brett Giroir, MD; Deputy Administrator for Innovation & Quality and Director of the Center for Medicare and Medicaid Innovation, Adam Boehler; and Ed Simcox, Chief Technology Officer who participated in the meeting.

The National Kidney Foundation will continue to engage with HHS to advance our recommendations and we greatly appreciate the Secretary’s leadership in making CKD a public health priority.



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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.

Group Photo

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;
ID LDPA Sign Photo

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.

Left to Right - Nieltje Gedney, Amy Bassano, Caroline Wilkie, Vanessa Evans, Erich Ditschman.jpg

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

Kahn, Robin 11.5.15.jpg

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!

capitol building

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”.


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.”


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: 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:

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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