“Appreciating the Simple Things”

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

April 2, 2020

With 3 out of 4 Americans under some type of shelter in place, do not travel, or stay at home order, living with kidney disease can be ever-more challenging. This week I’d like to share some of the things we’re working on to make it better including a focus on PPE and staying safe, some policy wins, and suggestions on how doing the simple things can help during this very complicated time.

Personal Protective Equipment (PPE)

PPE has become part of our common vernacular due to COVID-19 and we’ve all become aware that many of our nation’s healthcare providers, and their patients, do not have the necessary PPE to stay safe. This week, NKF joined with the American Society of Nephrology (ASN) in a joint letter to the Acting Secretary of Homeland Security and the Administrator of the Federal Emergency Management Agency (FEMA) in advocating for a release of any remaining PPE from the Strategic National Stockpile to help all patients, but in particular, those at higher risk: chronic kidney disease patients, patients on dialysis, and transplant recipients. While we recognize that many local businesses and national companies have stepped up to produce PPE, and the federal government has distributed this equipment to many states with critical shortages, it is simply not enough. Without adequate PPE supplies we cannot keep patients, or those who care for them, safe during this national pandemic.

Also related to keeping safe, if you’re a dialysis patient you might experience some changes to your dialysis routine, especially if you’re in an area hard hit with COVID-19. Some dialysis providers are moving shifts so that all the patients who are positive for coronavirus are seen at the end of the day. This helps minimize exposure for uninfected patients and gives the clinics a chance to thoroughly clean their facilities.  Some clinics are even creating special facilities just for patients who are positive with coronavirus. These are drastic measures, but they may help minimize the spread of COVID-19 and help keep you safe.  If you have any coronavirus symptoms, make sure you tell your care team before arriving to dialysis.

A Balancing Act

Living with kidney disease is a complicated balancing act.  If you’re a dialysis patient, you’re always measuring your fluid intake, balancing out the potassium, sodium, and phosphorus in your food and you, inadvertently, become a dietician without ever wanting to be one. If you’re a transplant patient like me, you need to limit high-calorie foods such as fatty foods, sweets, pastries, and anything high in fat or sugar. Translation, no binging on ice cream for me.

Now add in coronavirus, the urgent need for social distancing and limited trips to the supermarket and it really becomes a challenge. A few weeks ago, we developed a list of shelf-stable foods for kidney patients to have on hand to minimize their risk of going out. And we’ve now developed simple, kidney-healthy recipes using these shelf-stable foods to make it easier to follow a kidney friendly diet while sheltering in place. You’ll find good-tasting recipes like Fruit Pancakes, Sweet and Sour Chicken, Pea Risotto, Snack Mix, Pineapple Fruit Whip and many more on our COVID-19 resources page: kidney.org/coronavirus. I’m going to try making one this week because if I can cook it, just about anybody can. I’ll let you know how it goes.

A Few Good Wins

As I mentioned in my previous blogs, National Kidney Foundation advocated for kidney transplants to be considered non-elective surgeries so that these life-saving transplants could continue despite COVID-19; and they have been. But we were also advocating that dialysis access procedures for patients with kidney failure using a central venous catheter for hemodialysis also be allowed; and I’m happy to tell you that now those are, too, along with arteriovenous fistula, arteriovenous graft, PD catheter, and intravenous catheter. These important clarifications for what are elective versus non-elective can make the difference in life or death for a kidney patient and we are grateful to the Administration for acknowledging that these are all very necessary.

Social Distancing Reinforced

We hear it non-stop: use social distancing, it’s critical to stopping the spread of COVID-19, and critical to saving lives. To reinforce this, we decided to use an animation of our logo on social media to help spread the message. It’s a simple thing, social distancing, but one that can yield our country’s greatest results. Help spread the word by sharing this animation on your own social channels.

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Popcorn and Olive Oil

During such a complicated time I am finally starting to appreciate the simple things. I say “finally” because in truth, I rarely stop the frenetic round the clock schedule I keep, but COVID-19 has grounded me. Because of my immunosuppression I don’t go anywhere, no supermarket or pharmacy excursions (everything is delivered), no brief walks in the park with the dog (actually, I don’t own a dog), I’m grounded. But this week, I started to appreciate this more because it left me time to do something simple that I love: cooking popcorn in olive oil and catching up on the movies my wife and I always wanted to watch.  I know this sounds simple, but it made a difference to me this week.

I hope you find time to do what makes you appreciate the simple things. As always, if you have questions or need support, please contact our toll free patient information help line by calling (855) NKF-CARES, (1-855-653-2273) or by email nkfcares@kidney.org.  And please join our free online discussion forums.

PS: Yes, in case you’re wondering popcorn cooked in a little olive oil is a kidney friendly snack.

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Kidney X Challenge fuels and funds patient innovation

Last week at NKF’s Spring Clinical Meetings Deputy Secretary of the U.S. Department of Health and Human Services Eric Hargan announced the 25 winners of the Kidney X Patient Innovator Challenge. This award provides cash prizes to patients, care partners and anyone with innovative ideas and solutions to improve the daily lives of those with kidney disease.

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Understanding the importance of having patients and care partners serve as judges, NKF Kidney Advocacy Committee members Bobbie Reid and Haley Newkirk were both invited to serve on a panel that spent months reviewing more than 120 submissions.

“As a transplant patient, I know the community is in desperate need of innovation, along with the rest of the kidney care spectrum,” stated Haley about this opportunity to serve her community as a judge. “It was really interesting to consider the balance between what I thought would have the most impact, what was most likely to affect me personally, and how feasible some of the ideas really were. By including patients as judges, KidneyX seemed like a unique approach to homing in on patient needs.”

Bobbie was particularly proud to be part of this process, having navigated the kidney disease maze with her adult son from diagnosis of end stage renal disease (ESRD) to post-transplant. “KidneyX judging gave me the opportunity to see what was on the minds of other patients and care partners. This experience gave me a real sense of value. It reinforced the true foundation for my being an advocate to others living with kidney disease.”

Serving as a judge also gave Bobbie and Haley a better understanding of the roadblocks to innovation and a renewed hope that the kidney community would see real innovation. “Seeing the submissions firsthand opened my eyes to overcoming obstacles faced. As I read through my assigned entries, I found myself saying ‘What if’ this were available to us when we were at that phase?” said Bobbie Reed. “If just one person is helped by an entry that was made to the KidneyX Innovator Challenge, it will be one more accomplishment in improving another’s quality of life.”

Sharing these sentiments Haley stated, “Although I don’t know if or how these ideas will ultimately make their way to patients, I’m excited to see what this effort does to support new ideas and inspire others to tackle similar issues!”

Prizes were awarded in two categories, both for solutions already tried or put into practice as well as ideas for solutions not yet created. The Patient Innovator Challenge is part of the larger Kidney X initiative, a public-private partnership between HHS and the American Society of Nephrology (ASN) that incentivizes innovators to fill unmet patient needs through a series of prize competitions.

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Challenges, Unusual Opportunities and A New Respect for Lace-Ups during COVID-19

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By Kevin Longino, CEO ofNational Kidney Foundation and kidney transplant patient

With each new week during the COVID-19 crisis we all find ourselves dealing with new challenges and some unusual opportunities. So, first some challenges.

Dialysis, Moving to Home

Our patients are rightly concerned about how this health crisis affects them. Some of the questions we’re receiving from patients and care partners are related to dialysis and the fears of continuing in-center despite precautions the centers are taking to keep them safe. We are still working hard to ensure safety at in-center facilities and advocating for all kidney healthcare professionals to have the personal protective equipment necessary to keep themselves and our patients safe. But, NKF believes that all patients need immediate increased options to train for home dialysis.  Dialysis patients who typically receive their treatment in-center are at increased risk of COVID-19 and its complications.  We are working to remove the policy and regulatory barriers that prevent patients from safely fast-tracking to home dialysis and are urging Congress to act quickly. You can take action right now to ensure your Members of Congress understand that it’s a priority to give patients the option to dialyze at home.

Transplants, Still Safe?

We are also hearing from our transplant patients who are asking if kidney patients can still pursue a transplant, if it’s safe for a living donor, or if you can receive a transplant from someone who was infected with coronavirus. We have developed a new resource on this topic, Transplant and Coronavirus, and it addresses these very questions. As I mentioned in last week’s blog, transplants are considered essential surgeries and can proceed during this COVID-19 crisis.

New Patient Resources

NKF just developed a set of new COVID-19 resources which includes everything from general information on how coronavirus affects kidney patients, changing medications, coping and support, to tips for safely ordering takeout and sticking to a kidney-friendly diet; you can find these at  kidney.org/coronavirus.

Creativity and Commitment Meet Opportunity

This year we’re holding our annual Spring Clinical Meetings as a live-virtual event instead of the in-person gathering that brings together thousands of nephrology healthcare professionals all under one roof. Now I understand that many organizations throughout the nation have made this transition too, and it is a great way for us (and everyone) to learn how to deliver top notch education in a live-virtual format. But the unusual opportunity comes here: as part of this year’s gathering we were going to bring ten winners of the KidneyX: Patient Innovator Challenge, funded by NKF prize to New Orleans to interact directly with our conference attendees and explain their winning ideas and innovations on how to improve therapeutic options and quality of life for people living with kidney disease. Well, in-person clearly didn’t happen, so instead we invited these ten winners to film their own one-minute smart phone video explaining what their innovation is and how it helps patients.

People who never do this kind of thing—regular patients, care partners, healthcare professionals and a few seasoned execs—created fantastic videos that are not only inspiring for where the future of innovation can bring us, but timely. And instead of showcasing these winners to a few thousand people, thanks to social media and our live-virtual format, we can showcase them to the world. I urge you to take ten minutes today to view these one-minute, videos; it’s a good break from the non-stop coronavirus coverage and a chance to see what can happen when creativity and commitment meet opportunity.

A New Respect for Lace-Ups

Finally, sharing a quirky thing I discovered this week, a new-found respect for lace-ups. Because of my immunosuppression, we don’t wear “outside shoes” inside the house.  But for some reason, I can’t seem to concentrate well with slippers or sock feet.  So, I bought some sneakers online and those are my work shoes.  And I bought lace-ups because there is something about lacing up shoes that says okay, ready for work now.  Lace-ups are the ticket.  Loafers might as well be slippers and I am either too old, or too young, for Velcro.

So put your lace-ups on, stay home to work if you can, and as always if you have questions or need support, please contact our toll free patient information help line by calling (855) NKF-CARES, (1-855-653-2273) or by email nkfcares@kidney.org.  And please join our free online discussion forums.

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Supporting you during the coronavirus pandemic

By Kevin Longino, CEO, National Kidney Foundation and kidney transplant patient

I know the heightened concern you all have right now regarding the COVID-19 outbreak, and it can be unsettling. As a kidney transplant patient on a daily regimen of immunosuppressive drugs, I share your concerns.

During these challenging times facing our nation, it is imperative that patients with kidney disease take all precautions recommended by the Centers for Disease Control and Prevention (CDC), which are also detailed on our website.

But even while we are all being told to stay home and avoid crowds as much as possible during the outbreak—good advice that I am also following while working out of a make-shift home office—it’s imperative that kidney patients being treated with in-center hemodialysis continue with their regularly scheduled clinic treatments.

Recently the Centers for Medicare and Medicaid (CMS) released new guidelines for dialysis centers about how to take the necessary precautions to prevent the spread of COVID-19 to patients and staff. We at the National Kidney Foundation put together a patient-friendly version of those guidelines, which details what to expect when you go to your next treatment and what dialysis centers should be doing to keep you safe.

NKF also developed a resource on shelf-stable foods for kidney patients and necessary precautions all kidney patients should be taking to stay safe during the COVID-19 outbreak.  These resources are also available in Spanish.

We also know that many kidney patients on the transplant wait-list, or those who are pursuing a living organ donor, have been asking if they will even be able to get a transplant now that elective surgeries at hospitals have been temporarily halted. NKF sent a letter to HHS advocating for clarification that transplantations not be considered elective procedures and yesterday evening we learned that hospitals can continue to offer these life-saving transplantations  if they can safely do so.

We are still working to ensure that access to vascular access procedures for patients with kidney failure who care currently on hemodialysis using a central venous catheter (CVC), and patients with advanced chronic kidney disease (CKD) who are rapidly approaching dialysis within the next two to three months will be allowed during the COVID-19 outbreak.  We will continue to provide updates on this important subject.

In the coming days and weeks ahead, we will add new information on important topics and other essential resources for patients to kidney.org/coronavirus.

I know that these are uncertain times, but I want to assure you that throughout the COVID-19 crisis, NKF will be working around the clock to ensure that the best possible safeguards are in place to protect our kidney patients and all those who care for them. Moreover, we’re here to listen, learn, and support you during this time.  Please contact our toll free patient information help line by calling (855) NKF-CARES, (1-855-653-2273) or by email nkfcares@kidney.org.  And please join our free online discussion forums.

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The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act (H.R. 5534) Passes House E&C Health Subcommittee

The House Energy and Commerce Health Subcommittee gave a gift to kidney transplant patients on March 11th, the day before World Kidney Day, when it unanimously passed the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act (H.R. 5534).

capitol-building-at-district-of-columbiaDuring opening comments, Subcommittee Chairwoman Eshoo (D-CA) shared the sentiments of the members present saying that the coverage gap for immunosuppressive drugs “doesn’t make any sense.”  Congressman Burgess (R-TX), the lead Republican sponsor of the legislation, followed her, stating “a kidney transplant is an investment that the government makes in a person’s future.  Unfortunately, the investment is lost and the patient’s health is jeopardized if they lose coverage for immunosuppressive drugs.”

Today’s action from the House Energy and Commerce Health Subcommittee marks an important first step towards passage by the House of Representatives.  In order to move it through the next few steps, however, we need more Representatives and Senators to co-sponsor the bill. Please click here to write your Senators and Representatives.

Thank you to all our advocates who have helped us champion this cause; together we will pass this significant legislation.

 

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2020 Kidney Patient Summit Postponed

Over the weekend, the Centers for Disease Control and Prevention (CDC) updated its recommendations for older adults and people with kidney disease or other severe chronic medical conditions. They note that these groups appear to be at higher risk for experiencing more serious Coronavirus illness. Out of an abundance of caution, and to protect the health of our patients advocates during the current outbreak of COVID-19, NKF is postponing the 2020 Kidney Patient Summit.

Nothing is more important to us than the health and safety of our advocates. Please accept our sincerest apologies for any inconvenience this may cause.  Please stay safe and healthy during the next few weeks.  Please see updated information about the Coronavirus on the NKF website or by following updates from the Centers for Disease Control (CDC).

We will be in touch with Summit participants about rescheduling the Summit to a future date, and other activities you can participate in to support our policy priorities.  If you are interested in engaging as an advocate for the kidney community, email NKF at NKFadvocacy@kidney.org.

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Educating Congress about KidneyX’s Important Role in Accelerating Kidney Care

By Kevin Longino, Kidney Transplant Recipient and CEO of the National Kidney Foundation

Earlier this month, I had the honor of joining several distinguished panelists to educate policymakers and request that Congress fund KidneyX at $25 million for FY 2021.  The panel, which included Emily Levy from Synergy Partners; Jeff Ross, CEO of Miromatrix; Ed Simcox, Chief Technology Officer for the Department of Health and Human Services (HHS); and John Sedor, KidneyX’s Chair highlighted KidneyX’s initial prize competitions, its central role in the Administration’s strategy to advance care for the more than 37 million kidney patients (including the development of the world’s first artificial kidney!), and why Congressional support is critical for KidneyX to achieve its mission.

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KidneyX is a public-private partnership between the U.S. Department of Health and Human Services (HHS) and the American Society of Nephrology (ASN) that incentivizes innovators to fill unmet patient needs through a series of prize competitions. NKF is a proud partner in this effort and I am honored to serve on the KidneyX Steering Committee.

Each of the panelists spoke about how KidneyX is already starting to drive innovation in the marketplace. HHS Chief Technology Officer Ed Simcox shared his experience at the 2020 Startup Health Festival in San Francisco, where startup companies showcase new technology and applications to the investor community. “People are now coming up to me with new adjacent technologies seeking ways to promote these new technologies to benefit the kidney community.”  Other panelists highlighted, however, that significant additional resources are needed if this initiative is to deliver on its mission and called on Congress to increase funding for this important initiative.

Experts estimate that KidneyX will need a total investment of $250 million over five years to develop an artificial kidney and accelerate technology development in the prevention, diagnosis, and treatment of kidney diseases.  In FY 2020, Congress began its commitment to KidneyX with a $5 million appropriation.  NKF calls on Congress to significantly increase our federal government’s response to kidney disease by increasing funding for KidneyX, kidney health public awareness efforts, biomedical research, and other programs that support people with kidney disease and their families.

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NKF Applauds Administration’s Focus on Kidney Health

On February 10th, the Administration released its vision for funding the U.S. government, including proposals to extend Medicare coverage for immunosuppressive drugs for kidney transplant patients.  This policy change could save the lives and transplants of thousands of kidney patients, while also saving taxpayers $73 million to $300 million over ten years, according to separate studies by the U.S. Department of Health and Human Services and the Centers for Medicare & Medicaid Services. While Congress must pass legislation for this change to take place, it is promising that the Administration also referenced it in their budget blueprint.

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The budget proposal also included provisions to increase Organ Procurement Organizations (OPOs) accountability measures and expand benefits under the National Living Donor Assistance Center’s (NLDAC).  Collectively, these reforms will increase the number of organs available for transplant and have an overall positive impact on the kidney community.

While Congress begins its process of reviewing the Administration’s budget and assembling its own, the National Kidney Foundation will continue to fight for improved funding for kidney programs and research. 

A new priority this year is a request for $10 million to support a kidney disease awareness initiative, as outlined in Administration’s July 2019 Advancing American Kidney Health (AAKI) initiative.  This funding would help identify the 90% of kidney patients who do not know they have the disease.  NKF also calls on Congress to fully fund the KidneyX program at $25 million.  This important public-private partnership incentivizes innovators to fill unmet patient needs through a series of prize competitions focused on technology development and commercialization for the prevention, diagnosis, and treatment of kidney diseases.

NKF will also continue to work with Members of Congress on both sides of the aisle to fight for increased funding for the Centers for Disease Control and Prevention’s Chronic Kidney Disease Initiative, the National Living Donor Assistance Center, and the National Institutes of Diabetes, Digestive and Kidney Disease (NIDDK).

As the appropriations season gets underway, we will be calling on Kidney Advocates to contact their members of Congress in support of these funding requests.  We hope you will support these efforts to that we can all improve awareness, treatment and provide a brighter future for kidney patients.

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Congressional Hearing Held on the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2019 (H.R. 5534)

Congressmen Kind (D-WI) and Burgess (R-TX) have given the kidney community an amazing New Year’s present by introducing the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2019 (H.R. 5534)! NKF has worked very closely with our Congressional champions, the transplant community, and other stakeholders to craft and build support for the legislation, which would eliminate the 36-month limit on Medicare coverage of immunosuppressive drugs for kidney transplant patients who do not otherwise have coverage for these important medications.

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Even more exciting, on Wednesday, January 8th, the House Energy and Commerce Committee held a hearing, during which NKF Board Member Dr. Matthew Cooper testified on behalf of NKF and the kidney community for this legislation. Throughout the hearing, Members of Congress commented on the absurdity of the current policy and promised to move the bill quickly.  Subcommittee Chair and Co-sponsor of the legislation Anna Eshoo (D-CA) commented, “This bill will move. It just makes sense.”  Clearly, this very promising, but NKF must continue to advocate for the passage of this life-saving legislation.

Please help us ensure that Congress gives all kidney patients this landmark benefit!  Write your Members of Congress to urge them co-sponsor this bill so that we can help those in need NOW.

Click to read NKF’s and Dr. Matthew Cooper’s testimony.

Click to read NKF’s press release on the hearing.

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New Rules to Help Organ Supply Crisis and Funding for Living Donors

On December 17th, the Administration and Congress took significant steps towards improving kidney disease policy and funding.  The National Kidney Foundation applauds these efforts to help the nearly 95,000 Americans waiting on a life-saving kidney transplant.

White_House_DCThe Administration announced two new proposed rules to address the critical organ supply crisis in America by expanding reimbursable expenses for living donors, establishing quality metrics for Organ Procurement Organizations (OPOs) and increasing the supply of transplantable deceased donor kidneys.

One of the proposed rules will expand financial assistance to living donors under the National Living Donor Assistance Center (NLDAC) to  allow donors who take time off from their jobs for donation and recovery to receive reimbursement for lost wages, childcare and eldercare expenses—all of which NKF has advocated for as outlined in A Path Forward for Increasing Kidney Transplantation. These changes will help ensure living donors are made financially whole after giving the gift of life.  Increasing the available pool of resources under NLDAC is critical to ensuring its success and to increasing the number of living donors.

Another proposed rule will put quality metrics in place for OPOs to help minimize kidney discards and encourage the use of less-than-perfect deceased donor organs, which can still be viable options for patients on the waitlist. The Centers for Medicare and Medicaid Services (CMS) estimates that if all OPOs were to meet both the donation and transplantation rate measures, the number of transplants would increase by thousands per year. If finalized, these changes would take effect in 2022.

capitol buildingMeanwhile, The House of Representatives approved the FY2020 appropriations bill that includes a funding increase for several kidney disease programs within the Department of Health and Human Services (HHS).

Specifically, the bill increased funding for the NLDAC by $1 million, bringing the overall funding level to $4.5 million.  The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) will receive over $2.1 billion.

Additionally, Congress provided $5 million for the KidneyX initiative – a public-private partnership to accelerate the development and commercialization of next-generation innovations to improve in the prevention, diagnosis, and treatment of kidney diseases.  Finally, CDC will receive $2.5 million towards the prevention and promotion of kidney disease. NKF applauds Congress for these investments in programs to improve the health and well-being of people with kidney disease.

In the coming months, NKF will amplify our advocacy efforts with the Administration and Congress to ensure that these public policy opportunities provide the maximum impact for patients. NKF’s incredible advocates are responsible for the federal government’s unprecedented focus on kidney disease patients; and we look forward to your continued partnership in 2020.

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