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.

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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.

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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.


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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!

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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!



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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.

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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).

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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


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Representing Kidney Disease on Capitol Hill

By Troy Zimmerman, Vice President of Government Relations

On Tuesday, September 19th, I represented the National Kidney Foundation as one of 22 organizations which participated in a Capitol Hill Kidney Community Advocacy Day hosted by the American Society of Nephrology (ASN).  I was paired with representatives from the American Society of Pediatric Nephrology and American Nephrology Nurses Association as we helped present the unified voice of the kidney community.  We discussed two policy requests in our meetings:  support for a $2 billion increase in funding for the National Institutes of Health (NIH) for Fiscal Year 2018 and cosponsor the Living Donor Protection Act.

capitol building

An increase for NIH next year is very likely, with the House and Senate Appropriations Committees already recommending increased funding (including $2 billion by the Senate) in their respective bills for the Department of Health and Human Services (HHS).  30 million Americans are affected by CKD and 96% don’t know they have it.  Funding for NIH will support programs to develop new interventions and treatments for kidney disease including delaying or preventing end stage kidney failure (ESRD).  We expect Congress to vote on this bill later this year.

The Living Donor Protection Act H.R. 1270, introduced in the House in February, currently has 43 co-sponsors.  We asked Representatives who have not yet cosponsored H.R. 1270 to do so and thanked the 43 who have.   However, because the Senate’s version has not yet been introduced, a primary focus of our meetings was to identify a Republican willing to carry this legislation in the Senate.  We continue to be appreciative of Senator Gillibrand (D-NY) for her willingness to sponsor this legislation as the lead Democrat.

In the meantime, please help keep the momentum from this Advocacy Day moving by reach out to your elected officials for their support on these two priorities.  If you have a Republican Senator, we especially need your help to enlist them as an original sponsor for the Living Donor Protection Act by sending them the letter linked below:

To Support the Living Donor Protection Act:

Write Congress Now

Tweet Congress Now

To Support Kidney Disease Appropriations:

Write Congress Now

Tweet Congress Now

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Meeting with the New U. S. Surgeon General – Dr. Jerome Adams

By Curtis Warfield, Kidney Patient and KAC Liaison

I’ve had a very interesting journey since being diagnosed in 2012 with chronic kidney disease (CKD). With the emotional, mental and physical highs and lows of tests, hospitals, medications, dialysis and the blessings of a kidney transplant from a living donor in January 2016, it’s been quite a ride. And this journey has inspired me to “give forward” my time in promoting kidney and donor awareness.

Warfield and SGeneral

Dr. Jerome Adams, U.S. Surgeon General and Curtis Warfield

I work for Indiana State Department of Health (ISDH) and through happenstance last summer (2016), I met the State Health Commissioner Dr. Jerome Adams. We shared stories about his many physician and administrative roles, and I told him my kidney story and about my recent transplant surgery – which was six months post at the time. Somehow, with no intent, I left an impression. He featured my kidney story in his March 2017 ISDH Commissioner’s newsletter and he has taken time to speak to me again on several occasions.

Dr. Adams was confirmed on August 3rd, 2017 as the U.S. Surgeon General. Before he left Indiana for his new position, I wanted to meet with Dr. Adams to discuss NKF policy priorities, such as protecting living donors and promoting early detection, and get his insight on meeting with legislators to discuss CKD policy. I was surprised to get a call the day after I requested a meeting. The meeting was brief but it was powerful.

We spoke about my advocate activities with NKF and Indiana Donor Network, and he offered a few tips to maximize my impact when speaking with state and national legislators.

  • When telling your story, include another story that has been highlighted in your area. Make the connection about how your stories affect the community.
  • National statistics are good but highlight your state stats. Representatives and Senators will be more interested in how CKD directly affects their constituents.
    • Highlight personal points of interest from your area that can make an impact. An example could be – the hospital, or transplant center, in that Member’s local district that performs transplants, particularly if it is nationally ranked. And talk about the hours you must drive to get to a hospital or the total number of hours you spend yearly at a dialysis center
  • Check to see what committees and groups your legislators sit on and see if there is support from any other legislators for your issue.
  • Make personal contact with the legislator’s healthcare staff in their D.C. office and make sure they get copies of any information you give to your legislator.
  • Contact the legislative liaisons at your local hospital or health agency. It’s helpful to have other outside agency support for your efforts, especially from those who have contacts in a legislator’s office.

Dr. Adams stated the more resources you go into your meeting with, the more people will listen and keep your information on top of the pile. That keeps it moving in a positive direction.

When our meeting ended, Dr. Adams offered an invitation to visit him when in D.C., which I plan to use.  I wish him the best, as I know he’ll do well as Surgeon General. He’s well versed on the medical and human issues facing our nation, and is committed to public health and public health awareness.  I look forward to having an advocate for kidney disease patients serving as Surgeon General.

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“Winter” may be coming, but August is here!

by Andrew Fullerton, Government Relations Manager

What is so special about August that you should take time away from binge watching “Game of Thrones?” 

During August, your Senators and Representatives will be coming home from Washington, D.C. for the month to meet with constituents and attend events in the state or district.  This means you have a chance to meet with them, tell them about your kidney story, and how they can support chronic kidney disease (CKD) patients.

Uncle sam advocacy blog

Why is this important?

We want you to meet with your legislators – or their staff – at their office and various events around your hometown.  Sign-up for their mailing list and attend their next town hall meeting with other advocates.  Visit them at the state fair or other widely attended events.  Do you also see your state legislators at the event? Say hello to them and educate them as well.  Learn more about these activities.

What else can I do to support CKD policy priorities?

There are a couple fun activities to build support for CKD patients from home and spread the word at the same time!  Consider making your presence known through social media!  Tweet your legislators or post on their Facebook site.  Take a video of yourself on your phone telling how important this is to you.  Take a picture of yourself holding a sign with a note about your CKD experience.  Also, share it with all of your connections using the hashtag #mykidneysmylife.  Interested?  Read this guide on how to engage lawmakers on social media.

Need more guidance?

Do you want to take action but need more guidance?  Contact Andrew Fullerton (andrew.fullerton@kidney.org) for assistance.  We are here to help you in your fight to advance CKD policy priorities.  Read our guides and policy fact sheets to help you make your case to your legislators.

Thank you for taking the time this August to reach out to your legislators and remember to also sign up to become an NKF advocate.

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