By Matthew Fitting, NKF Director of Grassroots Advocacy
Ahead of Election Day this November and with voters already casting ballots in many states, NKF continues its work to support every kidney patient as they safely make their voice heard at the ballot box, while also ensuring that candidates understand the importance of supporting a pro-kidney health agenda both on the campaign trail and once in office.
Our online Election Center empowers advocates across the country to quickly and easily find information on the voting options that their state offers and learn more about the candidates running to represent them, from Congress to the White House. It also provides key dates and deadlines for voting early, absentee, or in-person. If you will be visiting your polling place, we advise trying to go at off-peak hours– either mid-morning or mid-afternoon – and of course wearing a mask and physically distancing, just as you would in any other setting.
NKF’s CEO Kevin Longino and President Holly Mattix Kramer, MD, MPH, also recently delivered letters to both presidential campaigns, thanking the respective candidates for their continued commitment to improving the kidney health of all Americans and their respective track records of supporting kidney patients. They reaffirmed that the organization would serve as an ally and resource for whoever occupies the Oval Office, and to help inform executive policies that will promote better kidney health and mitigate the harm of kidney disease.
The impact that COVID-19 is having both on existing kidney patients and on the kidneys of those who contract the virus serves as a powerful reminder of the responsibility that the next administration and Congress will have to increase awareness around the public health crisis posed by Chronic Kidney Disease (CKD); the outsized burden of kidney disease on Medicare patients and spending; and the urgent need for an increase in federal research funding for kidney disease, among other issues.
Whether you’re voting by mail or in person, we want you to let us know that you’re a #KidneyVoter! Please consider sharing a photo of yourself after you’ve cast your ballot on social media using the hashtag #KidneyVoter. Together we can provide a powerful reminder that better kidney health for every American is on the ballot this November.
By Amber Pettis, kidney transplant recipient and NKF Kidney Advocacy Committee member
I recently had the honor of attending roundtable hosted by Center for Medicare and Medicaid Services (CMS) administrator, Seema Verma and HCA Healthcare. I was glad to offer my perspective as an End Stage Renal Disease (ESRD) patient to our discussion on kidney care policies and payment models that will create financial incentives for dialysis facilities, nephrologists, and other healthcare providers to improve how they manage chronic kidney disease (CKD) and ESRD in Medicare patients. The end goal of these policies is to achieve higher rates of home dialysis and transplantation.
A representative from the CMS Center for Medicare and Medicaid Innovation kicked things off, then Administrator Verma gave brief remarks. Both the professionals and patients participating in the conversation agreed that more work is called for to address the education and empowerment barriers around home dialysis follow incentives. Such incentives are a great way to incentivize home dialysis for patients and providers alike and ensure that access to it continues to grow.
As an ESRD patient, I’ve experienced several treatment options including in-center hemodialysis, peritoneal dialysis, and transplantation. Transplantation saved my life and dialysis care was the bridge to that new life. While transplantation was the treatment option that worked best for me, it is important to recognize that there is not a “one size fits all” solution when it comes to kidney care.
It is critical that ESRD patients have access to all treatment options and are provided the necessary education to make an informed decision about their care. These policies allow greater access to all treatment options and can lead to a better quality of life for those living with ESRD.
CKD patients around the nation depend on advancements in kidney care polices to sustain life. I am most grateful for the work being done around the policies and treatment options that improve the quality of life of the thousands of individuals, and their families, living with CKD.
On Wednesday, September 16th, more than 150 advocates from 43 states representing kidney patients nationwide and on behalf of the National Kidney Foundation (NKF), PKD Foundation, Alport Syndrome Foundation, and IGA Nephropathy Foundation met virtually with more than 160 legislators and health policy staff “on” Capitol Hill.
We also would like to offer a big thank you to actor, activist, and entrepreneur Wilmer Valderrama who joined advocates for Congressional meetings and spoke at our virtual Congressional briefing: “Kidney Health in the Hispanic Community: Are You The 33%?” He was joined by transplant recipient and NKF Kidney Advocacy Committee member Maria Grijalva as well as Dr. Silvia Rosas, MD, MSCE, nephrologist and epidemiologist at the Joslin Diabetes Center and the Beth Israel Deaconess Hospital in Boston, MA, Director of the Latino Kidney Clinic at Joslin Diabetes Center and Associate Professor of Medicine at Harvard Medical School.
Each year, NKF presents the Richard K. Salick Advocacy Award to an outstanding kidney patient advocate. This prestigious award is given to an individual who embodies the spirit of NKF’s patient advocacy. This year, we had the pleasure to recognize the amazing advocacy work of a living kidney donor from New Jersey, Jason Nothdurft.
Jason has been at the forefront of NKF’s advocacy efforts, both in his home state and our nation’s capital. His work during the last year includes asking Gov. Phil Murphy (D-NJ) to sign legislation providing paid leave for organ donation for state and local government employees, a tax credit for private companies offering paid leave for organ donation and a tax deduction for unreimbursed expenses related to living organ donation. Working with Assemblywoman Carol Murphy (D-7th), he also led NKF’s local efforts to introduce a state version of the federal Living Donor Protection Act (S4188/A6075). He met with federal legislators to discuss kidney policies more than six times in the last year. Additionally, his work on statewide policymaker education events, including May’s NKF New Jersey COVID and Kidney Disease briefing, have been essential to their success.
We also awarded Monica Fox, a transplant recipient, with the Kidney Transplant Champion Award for her amazing work helping to ensure that the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act (S. 3353/H.R. 5534) becomes law. During the last two years, she has worked closely with NKF’s government relations team to promote the immunosuppressive legislation in Congress by meeting with numerous Illinois legislators to promote the bill and has helped organize special educational events, like Senator Durbin’s (D-IL) October 2019 tour of a transplant center at the University of Illinois Hospital. The Senator spent several hours learning more about kidney disease and transplantation by meeting with patients and practitioners in their transplant program.
By Kevin Longino, CEO of National Kidney Foundation and kidney transplant patient
Always ready to take action no matter what, when or where, this week 150 kidney patient advocates from around the country will be Zooming with Members of Congress and their staffs to plea for action on kidney disease. As COVID-19 continues to create more kidney patients, their voices are needed now more than ever before. Read on to learn more.
Kidney Patient Summit
Today, advocates from kidney organizations representing nearly all 50 states will converge virtually for meetings with their Congressional delegations to inspire action for kidney disease at the 7th Annual Kidney Patient Summit.
This year, advocating for kidney disease has taken on new meaning. As we continue to see the devastating effects of COVID-19 on the kidney community, especially our dialysis and transplant patients, the pandemic is also creating new kidney patients at an alarming rate.
If you want to really understand a patient’s perspective on how a lack of Medicare coverage for immunosuppressive drugs affects a family, take a moment to see Bobbie’s story. Real families need real help now. We urge the Senate to pass the legislation this year, patients’ lives are truly hanging in the balance.
We’re also asking Congress to increase funding for kidney disease research and programs including a nationwide Kidney Risk Campaign to reach the undiagnosed. Why? An estimated 37 million adults in the U.S. are affected by kidney disease but 90% are unaware they even have it. Many patients don’t learn they have kidney disease until their kidneys have already failed. And kidney disease patients are at an increased risk of severe consequences from COVID-19; so people really need to know if they have kidney disease to better protect themselves.
And finally, to pass the Living Donor Protection Act which prohibits insurance companies from denying or limiting life, disability and long-term care insurance to living donors and from charging higher premiums. It also ensures job protections for organ donors who need to take medical leave for organ donation and recovery after surgery. Nearly 100,000 people are waiting on a kidney transplant right now but there aren’t enough kidneys to go around. We have to remove the barriers to living organ donation so that more people will consider donating a kidney to a loved one, friend, co-worker or even to someone they’ve never even met.
As the COVID-19 pandemic continues to have enormous impacts on our nation especially kidney patients, and the presidential election approaches, this is an ideal time for kidney patients, caregivers, living kidney donors and practitioners to make Congress aware of the needs of our kidney community.
With this in mind, the National Kidney Foundation (NKF) is virtually hosting more than 150 advocates, joined by the PKD Foundation, Alport Syndrome Foundation, and IGA Nephropathy Foundation, as part of its rescheduled annual Kidney Patient Summit on September 15th and 16th. At the two-day Summit, advocates will be:
1) Briefed on how to best tell their personal stories to help convey urgency for our legislative asks, meet with their legislators and staff, and build lasting relationships with them;
2) Meet other advocates from across the country to share stories, excitement and achievements; and
NKF is also excited to be joined by actor, activist, and entrepreneur Wilmer Valderrama at our virtual Congressional briefing: “Kidney Health in the Hispanic Community: Are You The 33%?”This briefing will discuss some of the reasons that Hispanic or Latino people are more than 1.3 times as likely as non-Hispanics or Latinos to develop kidney disease and Wilmer will be joined by 33-year kidney transplant recipient and Kidney Advocacy Committee member Maria Grijalva as well as Dr. Silvia Rosas, MD, MSCE, nephrologist and epidemiologist at the Joslin Diabetes Center and the Beth Israel Deaconess Hospital in Boston, MA, Director of the Latino Kidney Clinic at Joslin Diabetes Center and Associate Professor of Medicine at Harvard Medical School.
This will be my first time attending the NKF Kidney Patient Summit and I could not be more excited! I am looking forward to learning more about the issues that surround legislation reform and to brainstorming new ways to engage potential organ donors. Beyond that, I’d love to meet the other advocates from around the country who feel as passionately about kidney health education as I do.
-Tyche Nettingham, CA
When I saw that this year’s Kidney Patient Summit was going to be a virtual event, I was very excited. I have not yet been able to attend when it has been held in Washington DC, but a virtual event opens up new opportunities, and I’m planning on taking part this year for the first time!
I am passionate about being a kidney advocate and have a particular interest in protecting living donors; increasing registration for deceased organ, tissue and eye donation; and in getting Medicare to expand coverage for immunosuppressive drugs to all transplant recipients. My advocacy is a way of thanking the living kidney donors for my brother and me, and in recognition of my sister’s deceased donor and family. I hope to learn from fellow attendees about effective advocacy strategies – especially when it comes to contacting members of Congress that represent districts where we don’t currently have KAC members.
-Sara Hicklin, WI
I have kidney disease, improved by having a 33-years-long\transplant. I was given this new energy and I am using it to the fullest for others who cannot and had not been able to voice for themselves. Luckily, we now have many joining forces for the same cause – protecting kidney patients.
My few words are words that I hope will be heard by legislators during these virtual summit meetings! My drive is to provide improvements in the care of kidney patients, increased coverage of transplant medications past the 36 months currently covered by Medicare, and to give guidance and insights into our lives living with kidney disease to policymakers who are unaware of the change we needed.
Each year, the Kidney Patient Summit is an opportunity to reinforce old friendships and build new ones. It is a time to reflect, listen and remind ourselves why the fight for kidney disease is so important. Stories of challenging journeys from other advocates who have struggles with a disease that takes so much of our quality of life and for many of our advocates, their lives. But from those challenges, we build strength and courage to bring the voices of many, to those who can make a policy change so that actually changes actually occur for those suffering from kidney disease.
I’m excited to attend this year’s virtual Kidney Patient Summit in September. I’ve never attended a kidney patient summit, in-person or virtually, so this will definitely be a new experience for me.
I’m looking forward to a couple of things during the two days. First, I still feel new, uneasy, and unsure of myself in the role of a kidney advocate, so connecting with fellow advocates I think will be helpful. I know there will be plenty of people participating in the Summit who can provide tips and tricks of the trade when it comes to advocating on behalf of myself and all kidney patients. Also, I’m looking forward to learning more about the various legislative issues that are important to NKF, and how I, as a kidney advocate, can best work with members of Congress to be successful in getting important and meaningful legislation passed.
It’s an honor to participate as an advocate in the 2020 Kidney Patient Summit. I do so on behalf of my mother, Tina, who suffered from kidney disease and for others who need a voice. The Summit provides an avenue for advocates to work together and towards a common goal. As advocates, we have an opportunity to initiate policy changes by providing information and personal experience on our kidney disease priorities to our legislators.
As my mother’s caretaker, I understand the issues she experienced living with kidney disease and the ones our family experienced as a result of her illness. Through the Summit training, Ihope to receive feedback that will enhance the delivery of my message and additional resources that will assist me in patient advocacy. I’m looking forward to networking and exchanging best practices with other advocates with the goal of enhancing the lives of individuals living with kidney disease.
Each year, NKF provides input on what is known as the End Stage Renal Disease (ESRD) prospective payment system (PPS). This is an annual regulation put forth by the Centers for Medicare and Medicaid Services (CMS) that determines how dialysis facilities are paid in the coming year. NKF typically offers recommendations on how dialysis facilities can make dialysis safer, less burdensome, and more patient centered.
This year, the regulation includes a proposal that would help dialysis facilities purchase new and innovative home dialysis machines. In short, the plan encourages medical device companies to invest in inventive approaches home dialysis, while creating a pathway for dialysis patients to benefit from them. The plan is called TPNIES (pronounced “TP-O-NIES”), which stands for Transitional Payment for New and Innovative Equipment and Supplies. NKF strongly supports TPNIES – for too long, dialysis patients have not had access to the kind of advances in medical science and technology that are common to every other part of our healthcare system. We don’t think that’s fair to dialysis patients.
Making the plan work relies on ensuring that CMS understands what innovation means to home dialysis patients. In a letter we sent to CMS a few days ago, we shared some examples of what innovation means to patients and patient advocates:
A lighter home hemodialysis machine that is more portable
A PD system that generates its own dialysate, so patients don’t need to store and move so many heavy boxes
A mechanism that make cannulation easier (for example that decreases the risk of needle dislodgement)
Automating the PD catheter connection process
The future will bring new technology and greater advances to home dialysis. Patient input is vital to making sure these advances and the advances that matter to you and that help you live the life you want. We want to hear from you – what else do you think would be an innovative improvement to home dialysis? Tell us in the comments or email Miriam Godwin at email@example.com.
By Curtis Warfield, Kidney transplant recipient and Kidney Advocacy Committee advocate
On Wednesday and Thursday Aug 12 and 13, 2020, I had to pleasure to once again speak to my members of the US Congress and their staff about kidney health policy priorities. NKF partnered with KidneyCan on their District Days. KidneyCAN is a leading kidney cancer awareness group for the kidney cancer patient community.
I admit that while I had heard of kidney cancer, I was not too familiar with this disease. I went into the training seminars with an open mind to learning more about kidney cancer and to be a helpful advocate towards this cause. More than 73,750 people this year alone will be diagnosed with kidney cancer this year; more than 15,000 patients will die. However, more that 15.5 million Americans are alive today thanks to the kind of cancer research for which we were advocating.
Due to COVID-19, the training and all meetings were held virtually. 117 advocates represented 26 states from 8 different organizations. The Advocacy Education Seminar was held a week prior to provide training for Congressional meetings. NKF’s Matt Fitting along with Kimberly Serota of American Urological Association (AUA), and KidneyCan President and Co-Founder Bryan Lewis gave excellent presentation on the current legislative landscape and explaining what the “Asks” from Congress. Our four “Asks” were:
1) $3 billion increase in funding for the National Institutes of Health and National Cancer Institute. 2) $50 million for the Kidney Cancer Research Program (part of the CDMRP). 3) Continue to support legislative initiatives that contribute to robust, sustainable funding for medical research. 4) Continue to listen to the patient perspective on legislative policy matters.
The top two asks were the most important. Increase funding to the National Institute of Health (NHI) and National Cancer Institute helps in cancer research. Almost every major medical breakthrough in cancer can be traced back to NCI or NIH in the past 50 years. The 50 million for Kidney Cancer Research is for annual funding specifically for kidney cancer. Before 2015, there was no known money designated directly for kidney research.
My first meeting was supposed to be with Congressman Carson and his legislative assistant (LA). Unfortunately, Representative Carson had a last-minute call out and wasn’t able to attend. After the introductions with his LA, I shared the mission of KidneyCan and the facts of kidney cancer. During the “asks” portion, I related how NHI has helped in kidney disease research along with my experience being on CDMRP panels and how effective they have been with research in kidney health. I also thanked him for the congressman’s support of the past bills that he as co-sponsored on kidney disease.
My meeting was with Senator Braun and his staff would be the only legislator meeting I had. I was paired with two patients with different types of kidney cancer. Their stories are amazing and they added that relatable personal story that is so important in these meetings. Senator Braun was very receptive during our meeting and knew the importance of funding NIH and CDMRP. He mentioned about his recent cosponsoring of Living Donor Protection Act and the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act. This allowed me to relate my experience into the meeting and to personally thank the senator for his support for better kidney health.
Senator Todd Young was also called out and unable to meet but we were able to meet with one of his LAs. The assistant with was courteous and open to hearing us. She didn’t appear to have much knowledge about kidney cancer, giving us an opportunity to educate her on the importance of improved kidney health policies.
Since then, I followed up with thank you emails and social media posts. These too goes a long way with getting your information into the proper hands!
I was excited to have this chance to work with KidneyCan and NKF on behalf of the kidney cancer community. Since I started advocating, it is always exciting to have the chance to help educate my legislators and their staff on Capitol Hill or in the district office. It gives me a chance to help those who are unable to have a voice and to give forward to the gift of life that my living donor gave to me. If you are interested in becoming an advocate yourself, email firstname.lastname@example.org, and join us in our mission!
By Kevin Longino, CEO of National Kidney Foundation and kidney transplant patient
Most Americans know the late civil rights icon Congressman John Lewis (D-GA) for his role as a freedom fighter, his stewardship of the Student Nonviolent Coordinating Committee and his leadership in organizing the 1963 March on Washington. Others know him for his record in Congress, fighting for voting rights, working for police reform, and combating health disparities.
But we at NKF know him as a faithful champion, leader, and friend of kidney patients. His contributions to our community are endless. He introduced legislation to strengthen kidney disease research and education, promoted innovation in dialysis care, and supported efforts to improve coverage of immunosuppressive drugs. He worked to increase research funding and shined a spotlight on health disparities. And he fought to make sure every American had access to high quality, affordable health insurance. Whether an issue was big or small, led by a Democrat or a Republican, if it was important to the kidney community, Congressman Lewis could be counted on for his support.
He was also the original “influencer.” He was so widely respected for his leadership on kidney health that when we would approach other Congressional offices about legislation, they would frequently ask, “Does Congressman Lewis support this?” His support brought others with it.
And who can forget his inspirational style? In 2016, the National Kidney Foundation honored Congressman Lewis at our annual congressional dinner. While making his remarks, every individual in the room watched in awe. Complete silence engulfed the room as he shared words of wisdom and appreciation.
Congressman Lewis was known for his phrase, “Make good trouble.” And by making good trouble for kidney patients, he made their lives immeasurably better. We cannot thank him enough for his leadership and support, and his presence will be missed in myriad ways.
Today the Immuno bill successfully passed a procedure hurdle in the House Energy and Commerce Committee. The House Energy and Commerce Committee marked up (aka reviewed and discussed) and reported out (issued their agreement to keep the bill moving to the full House) H.R. 5534, the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2019. In a large markup consisting of 29 other bills, the Immuno bill was reported out unanimously, with both Health Subcommittee Chairwoman Anna Eshoo (D-CA) and Ranking Member Michael Burgess (R-TX) speaking favorably about the bill.
In his opening statement, Ranking Member Burgess said, “I am especially appreciative of the inclusion of H.R. 5534, the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act, a policy that I have championed for nearly a decade. While Medicare allows certain individuals with end-stage renal disease to enroll in Medicare and will cover a patient’s kidney transplant, Medicare stops covering the immunosuppressive drugs after 36 months. Without these drugs, kidney transplant patients’ immune systems will reject their donated kidney and send them right back to dialysis. A kidney transplant is an investment in a patient’s future health and quality of life. We should protect that investment by covering these anti-rejection drugs past 36 months for kidney transplant patients who do not have other health insurance coverage. My bill will do just that, and I look forward to advancing it through the full committee to the House floor.”
After having been reported out favorably, the Immuno bill is now eligible for consideration by the entire House. It currently has 64 co-sponsors in the House, and 11 (plus one we expect to come next week) co-sponsors in the Senate. We continue to recruit Senate co-sponsors, and are advocating for the bill to be included in any fall package that may come together. We will keep you posted on its progress, and fingers crossed we get a vote this year.
Thank you all for your advocacy and focus on this bill over the long term. It is very rare for a bill to be written, introduced, and passed all in one year, so advocates like you who can be invested for the long-haul help ensure that important bills like this make it through the long, multi-year process and don’t get lost in the noise. Thank you all for your focus and dedication!
We continue seeing reports that those who contract COVID-19 are more likely to develop kidney disease, and it’s clear that one legacy of this virus will be an expanded American kidney patient population.
That’s why we’re disappointed to see that the House Committee on Appropriations, Subcommittee on Labor, Health and Human Services, Education, and Related Agencies discussed and reported out a FY2021 Appropriations Bill this week that fails to reflect that new reality. The legislation includes funding for several kidney related priorities, including the National Institutes for Health (NIH), the Centers for Disease Control and Prevention (CDC), National Living Donor Assistance Center (NLDAC), National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) and other agencies and departments.
Due to a budget agreement signed last year, there was very little room for large increases in this year’s appropriations bill. Even as the nation responds to the COVID-19 pandemic, there was an increase in spending of just under 1.3%, or $2.4 billion. While some of our kidney related programs saw a marginal increase, others were flat funded or not funded at all:
FY 2020 Funding Level
FY 2021 Proposed Funding Level
CDC CKD Program
Awaiting additional detail on funding for 2021
Kidney X Prize Competition
Kidney Risk Campaign (new program)
We are disappointed, however, to see no fundingdedicated to the Kidney Risk Campaign, a partnership between NKF and the Department of Health and Human Services designed to increase public awareness about kidney disease and promote access to early detection and treatment.
The modest increase in funding for NIDDK is also disappointing, especially considering the clear connection between kidney disease and COVID-19. NKF will continue to call on Congress to prioritize funding for kidney disease.