Thankful for our advocates this Thanksgiving!

With Thanksgiving upon us, we wish you all a happy and safe holiday!

We also want to express how thankful we are at the National Kidney Foundation for you, and for all of our many amazing advocates who work tirelessly to improve kidney disease policy with their lawmakers in Congress, with government agencies and in state capitals across the nation. 

Since the start of 2020, NKF advocates nationwide have taken action more than 26,000 times, and as a result sent more than 41,700 messages to their federal and state representatives.  By sending letters and e-mails, making phone calls, posting on social media, and registering for our various advocacy events, our advocates have relentlessly pushed to improve Americans’ kidney health through legislation and public policy. 

One of the outcomes of all these actions is that the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act (S. 3353/H.R. 5534) has more co-sponsorship support in Congress than ever before, and for the first time in two decades we are hopeful that Congress will pass this lifesaving bill before the end of 2020. 

Three states have passed Living Donor Protection Acts and several others have passed legislation to improve leave policies for organ donations.  This progress would not have happened if not for patient advocates sharing how much these protections mean to those looking to both give and receive the gift of life that a transplant can offer.  

Advocates like you have also met with legislators either in-person or virtually more than 600 times this year — including meetings with almost 200 federal representatives’ offices during our first-ever Virtual Kidney Patient Summit in September — and helped NKF host ten briefings for Congress and state legislators on topics that include COVID-19, health disparities, and other important policy priorities. 

More than 150 advocates met with their congressional offices and staff during our Virtual Kidney Patient Summit.

You’ve also been critical in helping us ensure the patient’s voice is heard in meetings with key regulatory agencies, including the Health Resources & Services Administration in the Department of Health and Human Services (HHS) and the Centers for Medicare and Medicaid Services. Along the way, many of you have also shared your personal stories explaining why you advocate for these issues right here on this blog.  

However you’ve shared your story, we’re grateful that you’ve chosen to do so and are excited to have you continue to advocate with us as we head toward a new year, where we look forward to additional victories and to building on our collective momentum! 

Thank you, and however you’re celebrating, we hope that you enjoy your Thanksgiving! 

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A lame duck opportunity for Congress to help kidney transplant patients

By Matthew Fitting, NKF Director of Grassroots Advocacy

With federal lawmakers returning to Washington post-election, the next few weeks are their last opportunity to pass legislation ahead of a new year and new Congress. With more co-sponsors in the House and Senate than ever before, we’re working to make sure representatives understand that our bill extending immunosuppressive drug coverage needs to be a top priority.

Kidney patients and those that care for them can’t keep waiting – we need this bill passed before they end this Congress. So we’re asking congressional lawmakers who are already on board to make the case to their leadership for why this is an urgent need, as well as encouraging any remaining holdouts that they need to co-sponsor and back this bill to show they’re fighting for the kidney patients that they represent.

We were also glad to see a recent report from the Congressional Budget Office that confirmed one of our key talking points on why this bill is so urgently needed: in addition to getting transplant patients the lifesaving medication that they need, it will also save $400 million in Medicare spending over the next 10 years as a result of it helping patients healthfully maintain their transplant and avoid costly dialysis.

Currently, Medicare payment for immunosuppressive drugs that maintain kidney transplants runs out for certain patients after three years. This bill would end that three-year limitation and ensure that all kidney transplant patients are able to access the drugs that allow them to maintain their transplant. Medicare coverage three years after the transplant would be limited to the immunosuppressive drugs only and would occur only if the individual does not have other forms of insurance such as Medicaid, other public coverage, or group health insurance.

NKF thanks the thousands of advocates who have reached out to their congressional delegations to express how much passing this bill would mean to them and to every kidney transplant patient. If you haven’t yet, please take action then share this alert with your friends and family on social media. Because of your tireless work, we are closer than ever to passing this bill.

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Medicare Open Enrollment season is here!

Medicare Open Enrollment season is here and runs through December 7th. Just as in past years, open enrollment is a time for people enrolled in Medicare to change their Medicare Part D (prescription drug plan). A new change this year also allows people on dialysis or living with a kidney transplant who are eligible for Medicare to choose to enroll in a Medicare Advantage plan (managed care plan) instead of traditional Medicare if they wish.  

Medicare Advantage (MA) plans are offered by private insurance companies that contract with Medicare to provide you with all your Part A and Part B benefits, often also offering additional benefits such as prescription drug coverage (Part D) and dental, vision or hearing benefits. Annual out-of-pocket costs for in-network services are capped – meaning after you pay a specific amount out-of-pocket you do not have to pay additional out-of-pocket costs.  

Prior to 2021, Medicare Advantage (MA) plans were not offered to people with End Stage Kidney Disease (ESKD), so you may not be familiar with this option. While MA plans can offer many benefits, it is important for kidney patients to make sure their dialysis facility and transplant center are in-network providers with the MA plan they choose. To learn more about the benefits and considerations of MA plans watch NKF’s recent Insurance webinar.  

Medicare Part D plans change every year, so even if you stay in the same plan, the services, providers, and medications that are covered, and their cost, may change. Make sure you review your plan so you are aware of any changes that could affect what you pay for medications.  

Research has shown that only 13% of people enrolled in Medicare change their Part D plan, even when doing so could result in better coverage and lower costs. It’s very important that you research plans every year. Don’t assume that if you stay in your current plan that your costs and coverage will stay the same.  

Read this document (pdf) to learn more about how to review your Medicare Part D options and why it’s so important. You can compare your options for both Medicare Part D plans and Medicare Advantage plans on Medicare’s plan finderwebsite.

Questions or want more information about insurance? Visit NKF’s Insurance explainer to learn more or contact our NKF Cares Helpline at 1.855.653.2273 or nkfcares@kidney.org.  

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Stay safe this election season: Get a flu shot!

This year, the National Kidney Foundation (NKF) is partnering with the Centers for Disease Control and Prevention (CDC) to help spread the word that everyone, especially patients with kidney disease, should get a flu vaccine. CDC recommends that people get a flu vaccine by the end of October, however, getting vaccinated later is still beneficial. A flu vaccine protects against the flu viruses that research indicates will be most common during the upcoming season.

A flu shot is especially important for people with certain medical conditions, like heart disease, diabetes and Chronic Kidney Disease who are at high risker of developing serious flu complications. Studies show that adults with diabetes – one of the major risk factors for kidney disease – make up 30% of flu hospitalizations reported to CDC.

While influenza is already a potentially dangerous and contagious virus getting a flu shot now is even more important given the additional strain on our medical system during the COVID-19 pandemic.

“For the upcoming flu season, flu vaccination will be very important to reduce flu so it can help reduce the overall impact of respiratory illnesses on the population and lessen the resulting burden on the healthcare system during the COVID-19 pandemic,” said NKF Chief Medical Officer Joseph Vassalotti, MD. “It is especially important that people with chronic kidney disease at any stage, and those who are treated with dialysis or kidney transplant, understand that they are at increased risk of severe illness from both COVID-19 and the flu.”

Because a person’s immune protection from vaccination declines over time, and because flu viruses are constantly changing, an annual flu vaccine is needed for optimal protection.

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Helping every #KidneyVoter make sure their voice is safely heard

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.

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NKF Advocate Speaks at CMS Roundtable on Kidney Care

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. 

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Kidney Patients Blaze a Virtual Trail on Capitol Hill!

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.

Thank you to all our advocates who took two days out of their busy schedules to advocate for the kidney community. They met with legislators to educate them about kidney disease and advocate for legislation to promote better kidney health, including the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act (S. 3353/H.R. 5534), the need for greater funding of kidney disease research and programs, including the Kidney Risk Campaign, and the Living Donor Protection Act (S. 511/H.R. 1224). As a result of these advocate meetings, a number of legislators from both parties and chambers committed to co-sponsor one or more of our legislative priorities! If you haven’t already, please support our advocate’s hard work by adding your voice and writing your legislators now.

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.

Watch video from the Congressional briefing, see photos from the Summit and learn more about this annual event by visiting our website and following @nkf_advocacy on twitter. We also encourage you to take action by writing your legislators and volunteering to become an advocate today!

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COVID-19 Won’t Stop Kidney Advocates

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.

Advocates will ask their Congressional delegations to support public policy priorities that advance kidney disease prevention, early detection, treatment, research and access to transplants, including living organ donation. And we’ll be joined by actor, activist, and entrepreneur Wilmer Valderrama who will lead a virtual briefing for Congressional staff on the impact of kidney disease to Hispanic communities.  Wilmer is serving as NKF’s national spokesperson for the “Are You the 33%?” campaign, which focuses on the 33 percent of adults in the U.S. at risk for developing kidney disease.

What do we want?

Well, in a nutshell, to make kidney health the national priority it deserves to be. We’ll be asking policymakers for three things. The first is to pass the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act which extends Medicare coverage of immunosuppressive drugs for kidney transplant patients beyond the 36-month cut-off currently in place to cover medications for the life of the transplant. This is bi-partisan legislation; not a political football. Not only will it save lives; it will save taxpayer money. According to a preliminary report from the Congressional Budget office, this legislation will save approximately $70 million over ten years.

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.

Final Thoughts

If you’re willing to join us to help make kidney disease the national priority it deserves to be, become an advocate, we need you!  And if you want to join the social conversation and share your kidney story use the hashtag #MyKidneysMyLife. 

Learn more information about the Kidney Patient Summit at advocacy.kidney.org.

Be well and stay safe.

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Educating Congress Virtually This Week!

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

3) Educate their elected officials and staff about kidney disease and three important kidney reforms – 1) the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act (S. 3353/H.R. 5534), 2) the need for greater funding of kidney disease research and programs, including the Kidney Risk Campaign, and 3) the Living Donor Protection Act (S. 511/H.R. 1224).

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.

Before you click to read more about the virtual Kidney Patient Summit, read these testimonials from patients, caregivers and living organ donors about the Summit and what it means to them. Interested in joining us next year? Apply to become one of NKF’s patient and practitioner advocates today!

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.

-Maria Grijalva

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.

-Dave Sultzer

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.

-Elizabeth Fortune

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, I hope 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.

-Roxana Haferbier

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A step forward for home dialysis innovation

By Miriam Godwin, NKF Health Policy Director

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 miriam.godwin@kidney.org.

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