2017 in Review: NKF’s Advocacy Accomplishments

By Troy Zimmerman, Vice President of Government Relations

2017 was a fantastic year for kidney patients as progress was made towards increasing awareness of chronic kidney disease (CKD) and introducing key legislative priorities.  The kidney patient community banded together to protect patients at the state and federal level.  Much of this success by National Kidney Foundation (NKF) was due to the work done by advocates like you, working on behalf of kidney patients.  Thank you for all your efforts.

Our accomplishments include the following:

  1. capitol building

    Capitol Hill

    On March 1st, 2017, the Living Donor Protection Act (H.R. 1270) was introduced to protect living organ donors and remove barriers to donation by prohibiting insurance companies from denying or limiting life, disability and long-term care insurance to living donors, and from charging higher premiums.  It will also help to protect the jobs of living donors while they recover from organ donation.  We have been successful this year in adding 54 co-sponsors in the House of Representatives, a quarter more than in the last two-year Congress. We are in discussions with several Senators to introduce a companion bill in the Senate and will continue to focus our efforts on building additional congressional support in 2018.  Help us by telling your Senators that you want them to introduce the Living Donor Protection Act.

  2. Legislation that NKF advocated for to promote the early detection and treatment of Chronic Kidney Disease (CKD), H.R. 3867, was introduced in September. This legislation seeks to demonstrate early detection of CKD, combined with effective and coordinated care that engages patients in the decision-making process, can improve clinical results and lower healthcare spending.  The voluntary practitioner-led Medicare pilot program will tie Medicare payment to improvements in the early detection of CKD and the care patients receive. This bill will promote stronger collaboration between primary care and nephrology practitioners to preserve kidney health and provide them with the resources they need to make measurable improvements in the care of people with CKD. We are in discussions with two Senators to introduce a companion bill in the Senate and will continue to focus our efforts on building additional congressional support in 2018.  Write to your Senators to tell them you want them to become an introductory sponsor.
  3. To complement our legislative efforts, NKF developed and recommended a novel model, CKDintercept: Comprehensive Chronic Kidney Disease Care Model, for improving patient-focused kidney care that is designed to improve testing for CKD in those at risk, identify it early, improve care coordination between primary care practitioners and nephrology practitioners, and ease care transitions for those that progress to advanced CKD and end-stage renal disease (ESRD). Our goals for this model are to: make sure that people know their risk of CKD, that people with it know they have it, empower primary care practitioners to work with patients to delay progression and receive timely referrals to nephrologists, and for patients who do progress to ESRD to have the opportunity to make informed decisions about their options for treatment including transplant, home dialysis or supportive care.
  4. FB_IMG_1494866910671

    Florida’s Proclamation Bring Presented

    Kidney Donor Day Proclamations, promoted by NKF’s Kidney Advocacy Committee advocates, have been approved by Governors and legislatures in Arizona, Florida, Indiana, Texas, and Nebraska.  These state government issued proclamations are one way that NKF’s advocates seek to honor and celebrate those who give the “gift of life.”  They are also being pursued and expected to be signed by Governors in Massachusetts, Minnesota, Pennsylvania, South Carolina, and Wisconsin in the coming weeks.

  5. The Kidney Advocacy Committee  consists of more than 200 advocates who engage with policy makers and promote kidney awareness, education and patient engagement in healthcare delivery and development of new therapies. KAC members also serve on panels and in conferences hosted by various government agencies to ensure that the patient voice is included in decisions impacting kidney patients.  For example, on December 6th, two KAC members participated in a Department of Defense consumer review panel to help guide grant proposal funding in kidney disease research.

    2017 Summit

    The Kidney Advocacy Committee

  6. The National Kidney Foundation led the way in Pennsylvania, defending state funding for the Chronic Renal Disease Program (CRDP), generating 1,750 letters, tweets and calls by kidney patients, families and friends, and healthcare practitioners to their state legislators.  The CRDP is a vital program that provides reimbursement for transportation to dialysis and prescription drug coverage – including post-transplant immunosuppressant drug coverage – and medical coverage as a payor of last resort.  The Governor and legislature sought to cut funding by more than 80%, or $6.6 million.  The efforts by NKF advocates limited reductions to this program to only 12%, or just $1 million, at a time when the state budget overall was reduced by nearly $2 billion.
  7. Leading up to World Kidney Day, more than 125 advocates and six kidney organizations, hosted by NKF, participated in the 4th annual Kidney Patient Summit and met with their Senators and Representatives to educate them on CKD and priority policy issues that will improve the lives of kidney patients.  Advocates from around the country supported this effort by sending more than 1,500 emails, tweets, and videos of themselves to members of Congress.  NKF also hosted a press conference on living organ donation that was attended by approximately 150 people, including three Congressional speakers, Rep. Nadler (D-NY), Rep. Herrera Beutler (R-WA) and her family, and Rep. Guthrie (R-KY).

    Press Conference

    Photos from the press conference on living organ donation

  8. NKF advocates sent 24,000 letters and tweets to Congress on our legislative priorities throughout 2017.  These included messages supporting the Living Donor Protection Act (H.R. 1270), legislation to promote early detection and treatment of CKD (H.R. 3867), supporting federal funding for kidney disease research and programs, and preserving prohibition of discrimination against people with pre-existing health conditions in health insurance.
  9. NKF began collaborating 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. The goal of this program is to decrease cardiovascular events like heart attack and stroke.
  10. NKF also collaborated with the Centers for Medicare and Medicaid Services (CMS) to develop a quality improvement special innovation project to improve earlier detection and treatment of CKD. CMS approved and funded CKD projects to two CMS Quality Improvement Network-Quality Improvement Organizations, TMF Health Quality Institute – covering Arkansas, Missouri, Oklahoma and Texas – and IPRO – covering New York. NKF is closely working with TMF on the project, which leverages our expertise in evidence-based care and utilizes our CKDinform continuing medical education platform to train primary care practitioners on how to identify and effectively manage CKD earlier. The program also directly reaches people with diabetes to educate them on their risk of CKD.
  11. We received four (4) new contracts/awards from government agencies/or government funded entities in which we are leading or collaborating on additional projects to improve kidney care across all stages these included:
  12. In November, NKF convened the 2017 Home Dialysis Controversies Conference in which patients, clinicians, caregivers, researchers, payers and healthcare industry representatives discussed who benefits from home dialysis and why; what can be done to help dialysis patients realize and achieve their modality preferences; and where evidence is lacking on the benefits, harms and needs of patients regarding home dialysis modality choices. Attendees explored barriers to beginning and continuing home dialysis, identified gaps in research, and proposed potential solutions. In the coming months, stakeholders will form working groups to expand the suggested research ideas into testable approaches to improve access to and continuity of home dialysis—with an emphasis on patient involvement throughout the research process. They will present these topics and designs at a second Home Dialysis Controversies Conference in Fall 2018.

While we have made great strides this year in promoting kidney disease education in Congress, federal agencies and state capitals, we continue to face many challenges in getting our bills enacted into law. However, with your continued outreach to your Members of Congress as constituents and voters –  we will be further along in overcoming these challenges.   Please visit our Advocacy Action Center and become an advocate to receive important alerts and to contact your legislators about improving CKD policy.

NKF primarily relies on public donations, including the people we serve—patients, family members, friends and others to accomplish our mission.  Please consider donating to help support our advocacy initiatives and other important work in 2018.

Let’s make 2018 even more successful on Capitol Hill through action, education and accelerating change to benefit all those affected by kidney disease.

Posted in Uncategorized | 4 Comments

Making Inroads in Congress

By Dr. Michael Choi, MD and National Kidney Foundation President

Recently, I had the privilege to represent the National Kidney Foundation in 11 meetings in the U.S. House of Representatives, eight of which were with the Member of Congress and the other three with their health staff member.  The purpose was to build support for legislation (H.R. 3867) spearheaded by the National Kidney Foundation to improve the early detection and treatment of chronic kidney disease (CKD). The highlight of the day was a full one-hour discussion with Rep. Markwayne Mullin (R-OK), who introduced H.R. 3867 at NKF’s request, about the impact of CKD and the importance of early detection. My meetings also provided an opportunity to talk about the broad impact of various NKF programs.


Every Representative I met is a member of a House health committee and/or a physician.  It is encouraging to know so many Members of Congress are physicians or other health professionals! I came away from each meeting impressed by their genuine concern for, and knowledge about, kidney patients.

For too long patients have asked why they were not diagnosed with CKD before learning they had kidney failure (ESRD). CKD affects 30 million people in the U.S. and, astonishingly about 90% with kidney disease don’t know they have it.

H.R. 3867 would require the Department of Health and Human Services (HHS) to design a voluntary practitioner-led Medicare pilot program that will tie Medicare payment to improvements in the early detection of CKD and the care patients receive. This bill will promote stronger collaboration between primary care and nephrology practitioners to preserve kidney health and give health care providers the necessary resources to make measurable improvements in the care of people with CKD.  The National Kidney Foundation believes this program can help change the pattern of how CKD is identified and treated, improving the outcomes and quality of life of kidney patients.

While my face-to-face meetings in Congress hopefully will result in additional cosponsors to H.R. 3867 (we gained one cosponsor immediately and I believe other Representatives from our meetings will soon join), nothing is as important as Legislators hearing directly from their constituents. The likelihood of swift action on our bill is greatly increased if it has strong bipartisan support.  If you have not already done so, please take action, and register your support with your Representative for early CKD legislation.

Posted in Uncategorized | 3 Comments

Early Detection and Treatment Saved My Life

By Jim Myers, Transplant Recipient and Kidney Advocacy Committee advocate

My name is James Myers and I’m a polycystic kidney disease (PKD) patient.  PKD is an inherited form of chronic kidney disease where liquid filled cysts form on one’s kidneys.  Most often it leads to high blood pressure, abdominal pain, and then kidney failure.

Myers, Jim

I was diagnosed at the age of 25, almost 40 years ago.  PKD runs in my family.  I’ve lost five members of my family to PKD, including my Dad.  When he passed away in 1983, I was tested.  On a simple x-ray, they were able to detect the large cysts on both of my kidneys.  This came as a blow to me, then a young practicing attorney. I was referred to Indiana University Health in Indianapolis.  They put me on high blood pressure medication, on a renal diet, and took blood and urine from me every six months.

Because I was tested and treated early in my life, I was able to postpone having to be on dialysis for 23 years, until the age of 58.  My dialysis was also easier on me than many of my clinic-mates and I was transplanted in four years – shorter than the average time in Indiana.

The fact that I was diagnosed and treated early on in my life has made a huge difference! The fact that my family doctor knew to make a quick referral to a nephrologist made a huge difference.  Their team approach to my case saved my life.  This is what H.R. 3867 is all about. This legislation would help doctors detect kidney disease earlier, when something can be done to slow the progression of the disease and improve the lives of patients.

My case shows that the early detection and treatment of kidney disease can prolong and improve a kidney patient’s life.  I’m living proof of that.  Please support the early detection and treatment legislation proposed by the National Kidney Foundation by sending your legislators a letter asking that they become a co-sponsor. By getting Congress to pass this law, we can save many more lives!

Posted in Uncategorized | 3 Comments

Volunteering with the Department of Defense on Kidney Disease

By Kent Bressler, RN,MA – Transplant recipient and Kidney Advocacy Committee advocate

In mid-2017, the National Kidney Foundation (NKF) nominated Erich Ditschman and myself to join the Congressionally Directed Medical Research Programs (CDMRP) Peer Reviewed Medical Research Program (PRMRP) panel organized by the Department of Defense (DOD) to review grant proposals.  As a kidney patient with FSGS, this gave me an amazing opportunity to represent kidney patients and help direct how grant funding is directed by the DOD for chronic kidney disease research.  I must tell you that I am profoundly grateful to have represented the National Kidney Foundation at this symposium.

Bressler , Kent Pic

On December 6th, I arrived in Reston, VA.  Once on site, I met six very talented and dedicated researchers who treated us with respect and dignity, not only during the panel meetings, but after the meetings.  They shared everything with us including the fact that they were grateful to people in the NKF community for our focus and interest in promoting research in chronic kidney disease. As a patient panelist, they were all grateful to get the human side attached to the research.

Scientists applying for a grant proposed to conduct innovative research focused on treatment and rehabilitation in numerous healthcare areas.  Overall, PRMRP panels reviewed proposals for $300 million across 48 research topics.  My panel was provided 17 grant proposals to review, all of which were related to chronic kidney disease.   Patient panelists, like myself, were asked to represent the collective view of patients and family members by preparing comments on the impact of the research on issues such as diagnosis, treatment, and quality of life.  Colonel Wanda L. Salzer, M.D., Director of the Congressionally Directed Medical Research Programs expressed her appreciation for the consumer advocates’ perspective during the scientific review sessions. “The Consumer Reviewers on each panel are instrumental in helping the scientists understand the patient’s perspective and provide valuable insight into the potential impact of the proposed project. They bring with them a sense of urgency and remind us all, of the human element involved in medical research.”

When I come to Washington, D.C. in March as part of the 5th Annual Kidney Patient Summit, I will come better armed with experience to share with my Congressman and Senators about how research conducted by the government affects patients across the country.  The fight for a cure is held back only by those who have stopped looking and I am going to do my part to make this a reality.

Posted in Uncategorized | 8 Comments

My Kidney Story

By Gary Bodenheimer, kidney patient and Kidney Advocacy Committee member

I am writing hoping that this will help people understand a little more about chronic kidney disease and I’m thinking of the spirit of the holiday season. This is the time of the year when we give gifts to family, friends and love ones. I am thinking of the THE BIG ASK: THE BIG GIVE that we all, as kidney patients, hope for every day. Today, I am asking for a different kind of giving spirit, the giving of your time as an advocate for those who either have chronic kidney disease (CKD), or the 30 million people who don’t know they have Kidney Disease.


My “Big Ask” now is for each person who reads this to consider stepping up to the plate in this Christmas season. Become an advocate for these patients by writing your Senators and your Representative asking them to support the Living Donor Protection Bill (H.R. 1270) which will save living donors from losing their jobs while recovering and prevent insurance discrimination. I also ask you to ask them to support the early detection and treatment bill (H.R. 3867). This bill will help doctors detect kidney disease earlier, when something can be done to slow the progression of the disease and improve the lives of patients like me.

As background, I would like to share some of my personal story about how I learned about kidney disease and how it has affected my life. I hope that as I go through these trials of kidney disease it will help other kidney patients and their families better understand what to expect and the issues that we face. I am thankful and grateful that I have a chance to share this.

I was under the care of an oncologist who had just ordered chemo treatments again, which meant six hours of being hooked up to the IV.   I can fall asleep through the treatment, then take a medicine so I don’t get sick from the chemo. I had also started another antibiotic that had to be taken every Monday and Friday, and a steroid daily.  Then, I received a call from my doctor’s nurse who said my doctor needs to follow up to repeat the test to see if my indicators for cancer were going up or down.

Months later, I was preparing to leave on a cruise. I hadn’t been feeling very well so I made an appointment with my primary care doctor. He ordered blood labs for me. The doctor walked in the examination room and I immediately knew something wasn’t right. He wasn’t his normal jolly go lucky self. He looked me in the eyes, “I think you are having some kidney issues. I want to send you to a specialist, a Nephrologist, to verify what I’m seeing.”

Two days later, on the day Cathy and I are leaving for Florida to go on our much-anticipated cruise, I had another appointment. My nephrologist had ordered blood labs and a urinalysis. He walks into the examination room, then it goes from bad to worse.  He says you are in Stage 4 of kidney disease. Your creatinine is 7.9 and your GFR is 18. There is also high amount of protein in your urine. You are in danger of renal failure and need dialysis. As I sat dumbfounded thinking “ok – so give me the magic pill that is going to cure this and I will be on my way. Our cruise is waiting for us.” He said instead there is no cure for kidney disease. However, there are things we can do to prolong the need for dialysis. He said he thinks he can prolong for as long as 5 years before needing dialysis.

It was some time later when I received a call from a lady at the National Kidney Foundation.  It was the call that changed my life forever.  She told me that they were starting a new advocacy program and my name came up in conversation as someone that might be interested in getting involved in helping advocate for people with CKD. I asked what I would have to do if I said yes? She said it involved talking to our elected officials to advocate for policies that would benefit kidney patients. I would meet with people and groups to tell my story about my kidney disease. This sounded like something right up my alley. I, of course, said “yes” and have not regretted a minute of it.

I hope that those of you reading my story will understand a little more about kidney disease now. Particularly, the need for early detection of kidney disease.  If it is found early, as happened with me, then there is something that can be done to slow it down. We also need the Living Donor Protection Act to help protect living donors. There are over 100,000 people waiting for a kidney transplant right now. On average 12 people die every day off the waiting list hoping for a donor to step up to bat. We need to do more to help people like you make the decision to become a living donor today.

Screen Shot 2017-03-07 at 9.39.42 PM

This holiday season, tell your legislators that you are in favor of them becoming co-sponsors for both of these bills. Then tell your family, friends, love ones and co-workers about your story of how you came to learn about kidney disease and the need for living organ donors. Finally, wish them all a very Happy Holiday and New Year!  This is your big gift to all those you know and those you don’t. Please also consider calling NKF Cares at 855-653-2273 to become a volunteer.

My thoughts and prayers for all kidney patients and their families.


Posted in Uncategorized | 2 Comments

Walking with Advocacy in New York

By Monique Hardin-Cordero

During the National Kidney Foundation (NKF) of Greater New York’s 2017 NYC WalkKidney Walk on Saturday, November 12th, I was stationed at the NKF tent.  One of the many activities available for Walker was to share their opinions with their lawmakers about chronic kidney disease (CKD) policies and priorities such as the Living Donor Protection Act (H.R. 1270) and NKF’s CKD early detection and treatment legislation (H.R. 3867).

I had a diversity of people, including organ donors, recipients and supporters who came to my table.  I can say without reservation that everyone who stopped by was very enthusiastic about making a difference through making their voices heard on Capitol Hill. Those not already familiar with NKF’s top priorities wanted to learn more about the legislation that we were promoting.  They were particularly interested in the Living Donor Protection Act, which focused on preventing insurance companies from charging higher cost to, or denying, living donors for long term care, disability, or life insurance.

They wanted to make sure their voices, and most importantly, stories were heard. One Walker spoke about her mother being removed from insurance and the fight that followed with her trying to get reinstated.  She was angry about how her mother had been treated and wanted to find a way to make a difference.

Others at the Walk spoke about the need to further promote early detection and treatment of kidney disease.  Everyone impacted by kidney failure, whether they have it or know someone else who does, understands that if they had been tested earlier there would have been a real chance to have caught their CKD before their kidneys failed.  More importantly, their doctor could have referred them to a nephrologist before their kidneys failed, who could have guided them towards treatments to slow the progression of their CKD.

nyc_kidney_walk-72I was heartened by the outpouring of support for NKF’s public policy priorities, which are every kidney patient’s priorities.  I look forward to seeing the impact their voices and 160 letters will have on Congress, and seeing all the New York congressional delegation becoming sponsors of these important pieces of legislation.

I hope you will join us by adding your voice on these important priorities!

Posted in Uncategorized | Leave a comment

Advocating to Advance Patient Centered Outcomes Research

By Tonya Saffer, Senior Health Policy Director at the National Kidney Foundation

Last week, I had the honor of walking the halls of Congress to advocate for continued patient-centered outcomes research. My companion for the day was Kimerly Coshow from the mountains in Blue Ridge, Georgia who is living with Parkinson’s. We were part of an effort to draw Congress’s attention on the need to reauthorize funding for the Patient Centered Outcomes Research Institute (PCORI).  Kim had flown to Washington, DC to advocate and attend PCORI’s 4th annual conference.  On Capitol Hill, she and I met with her two Senators Johnny Isakson and David Perdue, and her Representative Doug Collins.

PCORI is a nonprofit organization authorized by Congress in 2010. PCORI receives its funding through the patient-centered outcomes research trust fund (PCOR Trust Fund). The trust fund receives income from three funding streams: appropriations from the general fund of the Treasury, transfers from the Centers for Medicare & Medicaid Services (CMS) trust funds, and a fee assessed on private insurance and self-insured health plans (The PCOR Fee). Without re-authorization and continued income to the PCOR Trust Fund by September 30, 2019, PCORI will not be able to continue funding new patient-centered outcomes research.  Patient advocates wanted to get an early start in educating Congress about the critical importance of PCORI and the benefits it offers to all patients whether they have kidney disease, Parkinson’s, or struggle with other health conditions. This is the message that Kim and I teamed up to share.

PCORI research is different from what other government agencies, like the National Institutes of Health conduct. Traditional research, which produces many advances in health and science, does not always address the questions that matter most to patients. Like, what care works best for me given my current situation? Which treatment option will help me meet my personal goals and continue doing the things that matter most to me?  Many PCORI research projects seek to answer these questions as well as to help empower patients to make informed decisions about their treatment options. What’s also unique about PCORI is their engagement of patients in research. PCORI funded projects must have patients involved in the project from concept and proposal development all the way through to sharing the results of the study.  PCORI even has patients help select which proposals will get funded. PCORI has created a culture of patient engagement in research and that culture is extending to health care delivery as well.  PCORI research findings are shared publicly and stated clearly and simply so that non-researchers understand what they mean and how they can be used by patients to make better decisions about their treatment options.

Since its inception PCORI has provided $1.9 billion in funding for more than 600 research-related projects that focus not only on traditional clinical outcomes, but also on the needs, preferences and outcomes that matter most to patients.  PCORI funded research in kidney disease is helping patients make more informed decisions about their treatment options like the choice between peritoneal dialysis and hemodialysis, studying strategies to identify patients progressing to kidney failure earlier to improve their care transitions, and evaluating options to improve cardiovascular safety in hemodialysis patients. Recently, PCORI funded a National Kidney Foundation Patient Centered Outcomes Research Conference that identified the barriers to patient engagement in kidney disease research and resulted in patient driven research questions. The National Kidney Foundation will in turn fund a project to help answer one of these questions.

The research PCORI funds produces results that can help all patients be empowered and informed decision makers about their healthcare.  We hope that the Members of Congress who met with patient advocates last week have a better understanding of PCORI’s contributions and it’s need for continued funding.

Have you or are you currently participating in a PCORI funded project?  Share your experience in the comments below!



Posted in Uncategorized | 1 Comment

Affordable Care Act’s 5th Open Enrollment Period Begins

Need health insurance?  Or want to change your plan?  Open enrollment for health insurance plans through the Affordable Care Act (ACA) is here!  To make sure you have health insurance in 2018, sign up on healthcare.gov by December 15, 2017.

Health Insurance

This year the open enrollment period is shorter than usual, so don’t wait!  Get started now so you can shop around and do your research on what each plan offers.  Plans can change from year to year, so make sure you know what your plan covers, even if you are keeping the same plan that you had in 2017.  Things that might change in your plan include:  cost (premiums, deductibles, copays, coinsurance), which practitioners are in-network, additional coverage benefits (mental health, outpatient lab results, long term care, etc.).  Confused already?  Learn more about these terms here.

The National Kidney Foundation knows that shopping for health insurance can be challenging, particularly when you have a chronic health condition. That’s why we developed the Kidney Health Insurance Worksheet to help you get organized and know what to look for when shopping for coverage. We also created a decision aide for individuals with kidney failure who are exploring all of their insurance options, including eligibility for Medicare.

To apply visit healthcare.gov to apply online OR you can also seek free personalized assistance in person or over the phone to guide you through the process of picking a health insurance plan, applying for coverage, and checking to see if you qualify for financial assistance.  To get assistance find phone numbers for your state on healthcare.gov or on your state’s health insurance marketplace website.

Have you enrolled in an ACA Marketplace Plan? Share your experience with us by leaving a comment or emailing nkfadvocacy@kidney.org.

Posted in Uncategorized | Leave a comment

National Kidney Foundation Statement on President Trump’s Executive Order to Amend Affordable Care Act

On October 12, 2017, President Trump used the power of the Executive Order to undermine parts of the Affordable Care Act (ACA) and open the door to a health insurance marketplace that will leave individuals with pre-existing and chronic health care conditions, such as chronic kidney disease (CKD), unprotected. President Trump took two actions that will cause many individuals with pre-existing conditions to be unable to afford health insurance.

The first Executive Order, signed yesterday, allows for a health insurance market to create a two-tiered insurance market; one for sick individuals and one for younger healthy individuals. The second eliminates subsidies to insurance companies who are required to lower premiums and cost-sharing for low income individuals – making it more plausible that more insurers will leave the marketplace. Both moves make it likely that individuals with chronic conditions, including chronic kidney disease, will be unable to afford health insurance in the marketplace. If patients with CKD are left with little access to healthcare they will have difficulty getting care necessary to slow or prevent the progression of their disease. This will result in higher costs to Medicaid, Medicare and insurers.

Kidney transplant recipients who are under 65, and whose Medicare coverage will end 36 months post-transplant, also will have fewer options to obtain health insurance, limiting their ability to afford the anti-rejection medications they need to keep their kidney transplant.

The National Kidney Foundation calls on President Trump to keep his promise to protect people with pre-existing conditions and rescind these Executive orders.

Kidney Disease Facts

30 million American adults are estimated to have chronic kidney disease—and most aren’t aware of it. 1 in 3 American adults are at risk for chronic kidney disease. Risk factors for kidney disease include diabetes, high blood pressure, heart disease, obesity and family history of kidney failure. People of African American, Hispanic, Native American, Asian or Pacific Islander descent are at increased risk for developing the disease. African Americans are 3 times more likely than Whites, and Hispanics are nearly 1.5 times more likely than non-Hispanics to develop end stage renal disease (kidney failure).

Posted in Uncategorized | 1 Comment

NKF’s Landmark Early Detection Legislation Introduced in the U.S. House of Representatives!

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

After an intense 16 months of NKF laying the groundwork, I am pleased to announce another milestone in our CKDintercept initiative.  Landmark legislation, designed to help detect and treat CKD early, was introduced into the U.S. House of Representatives on September 28th.


NKF Kidney Advocacy Committee members

Representatives Markwayne Mullin (R-OK), George Holding (R-NC), Linda Sanchez (D-CA), and G.K. Butterfield (D-NC) introduced H.R. 3867, which seeks to demonstrate early detection of CKD, combined with effective and coordinated care that engages patients in the decision-making process, can improve clinical results and lower healthcare spending.

The voluntary practitioner-led Medicare pilot program will tie Medicare payment to improvements in the early detection of CKD and the care patients receive. This bill will promote stronger collaboration between primary care and nephrology practitioners to preserve kidney health and provide them with the resources they need to make measurable improvements in the care of people with CKD. NKF initiated this landmark legislation and believes it can help change the pattern of how CKD is identified and treated, improving the outcomes and quality of life of patients with CKD.

For too long patients have asked why they were not diagnosed with chronic kidney disease (CKD) before learning they had kidney failure (ESRD). CKD affects 30 million people in the U.S. and, astonishingly, 96% of those with early kidney disease don’t know they have it.  

I ask you to join me in supporting this legislation by emailing and tweeting our Representatives and asking them to become co-sponsors of the bill.  You can help this program change lives for the better.  Support H.R. 3867  – 30 million Americans affected by kidney disease are counting on you!

Write Congress Now

Tweet Congress Now


Posted in Uncategorized | 3 Comments