Congress Ignores Urgent Kidney Needs

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:

Program NameFY 2020 Funding LevelFY 2021 Proposed Funding Level
NIDDK$2.114 billion$2.132 billion
NLDAC$4.5 million$9.5 million
CDC CKD Program$2.5 millionAwaiting additional detail on funding for 2021
Kidney X Prize Competition$5 million$5 million
Kidney Risk Campaign (new program) No Funding

We are disappointed, however, to see no funding dedicated 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.

It is important to note that this is just the first step in the appropriations process, as the Senate has not yet released their draft, and a lot of negotiation will take place before a final bill is passed and signed by the President. That’s why we urge all our advocates to reach out to your Senators and ask them to support funding for the Kidney Risk Campaign in the Senate’s FY2021 Appropriations bill from the Labor, Health and Human Services, Education, and Related Agencies Subcommittee. In the meantime, NKF will continue to advocate for funding for kidney initiatives and access to quality kidney care for everyone.


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On my mind this week: Spikes, inequalities and kids

By Kevin Longino

CEO of National Kidney Foundation and kidney transplant patient

June 24, 2020

This week three issues are on my mind: the spikes in COVID-19 cases in states reopening and what that means for kidney patients, inequalities that exist within healthcare and what we can do about it, especially during the pandemic, and how the pandemic is affecting children with kidney disease.

Coronavirus Spikes are dangerous for kidney patients

Recent tracking reports from Johns Hopkins University and Medicine indicate that many states are currently experiencing spikes in the number of coronavirus cases. New research from Italy reports that chronic kidney disease was present in more than 20% of patients who died from COVID-19. And a new report from the Centers for Medicare and Medicaid Services (CMS) details the severe toll COVID-19 is taking on kidney patients saying: “End-stage renal disease (ESRD) patients (individuals with chronic kidney disease undergoing dialysis) had the highest rate of hospitalization among all Medicare beneficiaries, with 1,341 hospitalizations per 100,000 beneficiaries. Patients with ESRD are also more likely to have chronic comorbidities associated with increased COVID-19 complications and hospitalization, such as diabetes and heart failure.”

NKF has been sounding this alarm from the very beginning of the pandemic and that is why we’ve been advocating for home dialysis, telehealth, and home lab draws, which are critically important to keeping our patient population safe. Kidney patients cannot relax their use of face masks and other protective gear and must continue to self-isolate as much as possible.

Enacting Legislation to Address Health Disparities

If you’ve been reading my blogs, you know that addressing health disparities has been a focus and addressing these inequalities will continue to be a critical issue for the National Kidney Foundation moving forward. Recently, two Congressional hearings were held to address the outsized impact COVID-19 has on communities of color: Disproportionate Impact of COVID-19 on Communities of Color and Health Care Inequality: Confronting Racial and Ethnic Disparities in COVID-19 and the Health Care System.In our testimony for both hearings, we outlined the links between kidney disease and COVID-19: a higher incidence of co-morbidities, such as high blood pressure, diabetes, heart disease and obesity combined with a disadvantaged socioeconomic status contribute to higher COVID-19 mortality. Those same risk factors increase a person’s risk for kidney disease. Nationwide, African Americans represent 12.9% of the population, but have suffered 25.1% of deaths – roughly double their population share.

We urged Congress to enact legislation or work with the Administration to adopt policies that protect kidney patients – especially minority communities – during this public health epidemic. Specifically, we encouraged policymakers to promote testing for kidney disease in these same high-risk communities, provide resources to state and territorial health departments to facilitate concurrent testing of high-risk patients for both COVID-19 and kidney disease, expand access to home dialysis to allow kidney patients to social distance while still maintaining their essential dialysis regimen, ensure patient access to non-emergency medical transportation, extend telehealth waivers and allow patients to receive lab-draws at home. We are also asking the Government to provide funding for a public awareness campaign to better reach these communities given 90% of those affected by kidney disease aren’t yet aware they even have it.

Communities of color, in particular African American and Hispanic communities, are unduly affected by both COVID-19 and kidney disease. To not implement these critical protections puts an unnecessary burden on the communities who have suffered the most.

Pediatric Kidney Disease and COVID-19

Many parents of children with kidney disease, especially those with a transplant, are worried about how the reopening of states and returning to school this Fall will affect their child. Today, June 25th, we’re hosting a live Q&A webinar session at 2PM ET/11AM PT to address these concerns and help parents understand what to do. Join us for this live event, Pediatric Kidney Disease and COVID-19

Final Thoughts

If the past few months of dealing with a pandemic has taught us anything it’s that when we work together as a community, state and nation we are stronger together. We collectively helped flatten the curve and we need to take that same zeal forward as the summer months lure us into forgetfulness about the need to continue social distancing and taking other necessary precautions to keep everyone safe.

Please continue to check our COVID-19 resource page where we post all the latest information on issues facing our community in English and in Spanish. 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 join our free online discussion forums.

Be well and stay safe.

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Kidney patient hospital visits in the age of COVID-19

By Jim Myers, kidney transplant recipient and NKF Kidney Advocacy Committee member and Mary Baliker, transplant recipient and Kidney Advocacy Committee Regional Captain

Recently, we both had to visit our local medical facilities. For most people this might be concerning, however for transplant recipients like us it was terrifying. We wanted to share our experiences with our fellow kidney patients to help them understand what to expect if they find themselves in a similar situation.

Jim Myers’s Hospitalization

I have polycystic kidney disease (PKD) and I’m a transplant patient who recently celebrated my four-year anniversary! I was recently hospitalized after a NM gastrointestinal bleeding scan, an endoscopy and a colonoscopy revealed that I had gastrointestinal hemorrhage. Apparently, the majority of the bleeding was caused by a diverticula that burst.

I was nervous about the experience. I had barely left my apartment since the pandemic to reduce the risk of contracting COVID-19. I was put on the a non-COVID-19 wing of the hospital. I had a nurse and an aide on every shift. I had a gastroenterologist, a nephrologist, and a hospitalist that visited me at least once a day. I have a port for blood draws and infusions and a nurse on the IV team checked my connection to my port and infusion bag at least twice a day. The nurses and the aides dropped by my room at least once an hour. A social worker stopped by twice during my stay. I appreciated the attention and care they provided.

What I appreciated even more were the various ways that the practitioners tried to protect me from contracting COVID while there:

1. Social Distancing – I noticed every time I had contact or a conversation with anyone from the hospital, they stood a minimum of six feet away from me.

2. Person Protective Equipment (PPE) – I noticed that all physicians and staff always wore PPE in my room. This included masks, gowns, gloves, shoe coverings, and sometimes even face shields. I was asked to wear a facemask anytime someone came into the room and not to shake hands or touch anyone.

I noticed that every time a nurse, doctor or aide came into the room, they would put on the gloves when they came into my room and immediately dispose of them when they left. I have been fighting kidney disease for over 40 years now and I average about two hospital stays a year. I don’t recall seeing this much deliberate care in the past.

3. Walking – Near the end of my stay, I walked around the floor with a caregiver and nurse to help prepare me to go home. I was asked to wear PPE and the nurse and people in the hallways always maintained social distance.

4. Admission & Discharge – I came into the hospital by ambulance because I was extremely light-headed due to blood loss and not ambulatory. Although social distancing was not possible under these conditions, PPE was always worn and I was masked. On discharge, the nurse did wheel me to my ride that took me home in full PPE for her and again a mask for me.

Mary Baliker’s experience

It started with chills, shakes, total body aches, dry cough, and fever of 103.8 degrees. I called my transplant coordinator first and she referred me to my primary care doctor, out of concern that I might have contracted COVID-19. Primary care referred me to telehealth, where I spoke with a physician assistant who thought I should be seen in-person at urgent care. They all thought I might have COVID-19, a frightening prospect.

When I arrived at urgent care, staff were masked and gloved at the door. They asked medical questions about any symptoms and checked my temperature. The receptionist was glassed in with a small open area for her to talk and she was also in PPE. Being immunocompromised and a transplant recipient, I did not feel comfortable sitting in the busy waiting room, so I asked if I could wait in my car until I could be seen. She checked with a nurse and I was taken back to a clean clinic room. The nurse also told me I was the first person in the room that day and it had been thoroughly cleaned beforehand. When I was finally seen, the medical staff were in full PPE, including gowns, gloves, masks and face shields. I felt safe.

The doctor ordered a COVID-19 test, chest x-ray, and lab work. The doctor said the test would be back in 12 hours and they would call me in the morning. When I did not get a call from urgent care, I checked MyChart online and saw the test was negative. I was disappointed that I did not get a call for such an important result for me.

After my urgent care appointment, my transplant coordinator followed up due to sepsis concerns and to check my temperature. I felt a weight lift having my transplant team there when I needed them most. I am recovering quickly, getting daily exercise with my husband and dog, talking to my friends and family via Zoom to keep me connected to the world, and keeping socially distanced from people I don’t know.

Lessons learned

We both greatly appreciated the help and professionalism from the medial teams we met. We also need to thank our families and friend who supported us during our illnesses and who have given us such warm welcomes home.

Remember that as kidney patients, we are at greater risk of contracting COVID-19, particularly if one is a transplant recipient and immunosuppressed. Make sure that your team (and you) are using PPE when you meet. Try to wait in a safe area, where there are fewer people. This could be your car, a private room at the facility, or even outside on a nice day. Keep social distance, especially around medical facilities. Also, if you want to receive results of any tests from them, such as for COVID, you may have to get a commitment that they can contact you directly. As the country begins to  go back out, we urge you to protect yourselves and your families as it’s possible we can expect a new peak this year and the CDC continues to recommend that we self-isolate to stay safe. 

As part of NKF’s Kidney Advocacy Committee, we have had a chance to help advise the organization on the continually evolving needs of kidney patients during this pandemic. This has helped shape the advice that they are giving to our public leadership, including in their latest letter to federal policymakers and state governors, and educational briefings to educate around the concerns of the kidney community as economies reopen.

We hope this gives those of you that need medical care the confidence to contact your local emergency room or health care team. They will take all necessary steps to keep you safe. And, of course, don’t forget to review the great materials that NKF continues to provide us, available on their COVID-19 support webpage.

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Sharing the lifesaving power of transplant

By Matthew Cooper, M.D., and Lara Tushla

While COVID-19 has put many things on hold (school, work, travel and a multitude of life celebrations), it has not slowed down kidney disease. In fact, the rates of Acute Kidney Injury AKI) have increased dramatically and many of these AKI patients could develop chronic kidney disease (CKD) down the road.

As the pandemic spread across the country, many transplant programs dramatically decreased activity levels at all stages, from initial visits to the transplant center for a discussion about transplant  options, to evaluation testing, to living donor testing, to transplant surgery, as well as follow-up visits. There are many good reasons for implementing those limitations, even though organ transplant has remained one of the non-elective essential surgeries.

Recently several members of the NKF Public Policy Committee had a call with representatives from the Health Resources and Service Administration’s (HRSA) Division of Transplant (DoT). Listening to our colleagues Mary, Derek, and Haley tell their stories of the impact that dialysis and transplant have had on their lives was a powerful reminder that while there remain a lot of unknowns about the COVID-19 virus in the context of transplant, not receiving a timely transplant brings its own set of unknowns.

In a perfect world, the decision to accept a specific kidney from a specific donor at a specific time would be made between patients and their healthcare teams. While kidney transplant can be life-enhancing and prolonging, it is clear that those on the Public Policy Committee who live on the “patient” side of things see it as lifesaving in very real ways. The life that they have had since they received their transplants would not have been possible without that gift.

While HRSA’s DoT group made it clear that they were in “listening mode,” they were clearly impacted by the lived experiences of our members. We all know that people living with kidney disease are not just numbers on a chart or outcomes statistics but possess personal stories that can be so much more impactful.

From the literature we know that people who have a functioning transplant:

  • On average live 2.4-2.9 times as long as their gender and age matched peers receiving dialysis.
  • Enjoy significantly higher quality of life than people receiving dialysis.

The patient advocates who joined the call shared that in their post-transplant life they were able to:

  • Continue their education and build a career focused on advocating for others.
  • Raise a family and celebrate a multitude of wonderful life events.
  • Pave the way for other people with CKD by sharing hard learned lessons of the CKD world.
  • Keep the issues people with CKD face in front of patients, providers and elected officials.
  • Take nothing for granted. Cherish every day.

There is a parable about a group of blind people who are led to different parts of an elephant. They cannot tell what it is because the only feel their part – the one touching its side thinks it’s a wall, the one touching the trunk thinks it’s a snake; the one touching the leg thinks it’s a tree. Only by sharing what they have learned do they realize it is an elephant. When the NKF developed the Public Policy Committee, it brought together a group of people who share what they have learned including their needs, wishes, challenges, perspective and expertise, in order to more fully see a given situation so that a comprehensive plan can be developed.

Matthew Cooper, M.D., is the Director of Kidney and Pancreas Transplantation at Medstar Georgetown Transplant Institute and Professor of Surgery at Georgetown University School of Medicine. He serves on NKF’s National Board of Directors and is a member of NKF’s Public Policy Committee.

Lara Tushla is a kidney and pancreas social worker at Chicago’s Rush University Medical Center. She has experience in many phases of CKD including previous work as a dialysis social worker and serves on NKF’s Public Policy Committee.

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Pushing Forward

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

COVID-19 isn’t going anywhere yet, and neither are the health disparities which so adversely affect minority communities. It’s essential that we plan to protect kidney patients over the long-term and act now to affect real change.

Planning for the long-term

In a recent letter sent to the Centers for Medicare and Medicaid Services (CMS), NKF urged the Administration to consider extending and building upon the flexibilities and waivers they’ve put in place for kidney patients over the past few months to help keep them safe during the pandemic. We urged CMS to continue coverage for telehealth visits for all kidney patients, including transplant and dialysis patients, and allow patients to use any form of technology available to them for telehealth visits. We also urged them to provide coverage for at-home lab draws for kidney patients, transplant recipients and living organ donors, and also allow patients diagnosed with an acute kidney injury to receive home dialysis, instead of having to go to a center. These are all important for the long haul, until there is a coronavirus vaccine approved for immediate use.

The disproportionate risk of developing severe illness from COVID-19 is something kidney patients have to live with every day and it’s critically important that we continue to protect them. This week, CMS issued guidance on the reopening of healthcare facilities and spelled out what patients should know. CMS advises kidney patients to continue to stay home, avoid crowds and self-isolate due to their increased risk of developing severe illness from COVID-19, which only further validates the concerns NKF has been advocating for on extending flexibilities and waivers.

Final Thoughts

The past two weeks have been challenging for our nation, but especially for our African American family members, friends, colleagues, and neighbors. Coupled with COVID-19, which has so disproportionately affected minority communities, the senseless racial violence over the past few weeks has significantly added to their burden. Last week, I shared NKF’s statement on racial violence and disparities. We continue to stand united in helping to overcome the health disparities that exist for all minority communities but know that we have a long way to go. We will need your help to ensure that all patients can access high quality care. Please consider becoming an advocate today and help us drive the necessary change.

Please continue to check our COVID-19 resource page where we post all the latest information on issues facing our community in English and in Spanish. 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 join our free online discussion forums.

Be well and stay safe.

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Managing Routine Blood Tests During COVID-19

By Risa Simon, NKF patient advocate and founder of The Proactive Path and Transplantfirst Academy; and Michael Stevenson, NKF National Board Member and patient advocate.

As kidney patients we adhere to routine lab draws, whether we like it or not. Add COVID-19’s unpredictability factor and anxieties can soar. The thought of standing in line with others in a waiting room is cause for concern — especially the immunosuppressed. But postponing lab draws can result in dangerous risks. Because of this, kidney patients have become somewhat betwixt and between about timely lab draws. 

A Patient Experience

While some lab locations have ramped-up precautions, others have shut down or repurposed themselves exclusively for COVID-19 testing. Mike Stevenson, a kidney transplant recipient and NKF advocate from Columbus, Ohio, was very concerned when his pharmacy told him that he had to show evidence of a current lab draw before they would refill his immunosuppressant medications.

While Mike was anxious about going in for labs, he realized he didn’t have much choice. Fortunately, Mike reported, “My experience was better than I thought it would be. I was instructed to send a text upon my arrival and wait in my car until they directed me to enter the lobby wearing a mask. As luck would have it, I was the only patient there.” Mike also mentioned his phlebotomist was the only other person in the lab and that she was wearing gloves and a mask.

Communication & Preparedness

Be sure that you ask your lab about their precautions and if they can accommodate any special needs you have. If you need to go to new facility, always consider the new preparations. Infection control practices have always been important in the lab and CDC guidelines regarding COVID-19 precautions must be strictly adhered to without exception. Wearing masks and donning a new pair of gloves prior to the actual cleaning, palpation, and penetration of the injection site is now even more important. While social distancing cannot be followed during the draw, all supplies must be accessible to avoid cross-contamination.

If you’re not convinced that your lab will be as smooth or as careful as Mike’s, we have a few suggestions for you. These include making a call to your local lab to interview them about their COVID-19 protocols. Be sure they are still providing normal lab services, offering COVID-safe protections, and haven’t added COVID testing. If their answer doesn’t give you the peace of mind you were hoping for, you might want to consider some “outside-the-lab-box” alternatives.   

Living Outside the “Lab-Box”

One option could include using a mobile lab draw service, where a certified phlebotomist is dispatched to draw your blood in the “comfort zone” of your home. Home lab draws can eliminate long lines, lengthy waiting room stays and potential exposure to other patients and workers.

Need more safeguard assurance? Consider the drive-thru-open-window” technique. In this scenario, the patient can position themselves inside their car in their garage or on even on the pavement in their driveway. The patient is seated on the correct side of the car for the arm they choose to use while wearing a mask. Then their preferred arm can be placed on top of a plastic covered pillow (or freshly laundered rolled-up towel) over the open window’s ledge.

Getting orders to a mobile lab can be quite simple. Either the patient (or the ordering physician) contacts the mobile lab to request an appointment. The mobile lab will then request the physician’s order and that the patient’s insurance card be faxed or emailed. Typically, the patient will be required to set up an account online and pay the “draw-fee” in order to confirm the time and location of the draw. Be sure to interview the lab and inform them about your concerns and preferences. On the day of the appointment, a phlebotomist will meet the patient at the specified time and location to collect the samples.

Keep in mind that mobile lab “draw-only” fees aren’t typically covered by medical insurance, and on average run about $65 per home visit. Fees for all tests ordered by a doctor will be billed as usual to the patient’s insurance company.

Keep Yourself Safe!

As the pandemic continues to run its course and states reopen their economies, look after your health! Staying safe is the most important thing you can do. If you need more advice or support, please check NKF’s COVID-19 resource page where they post all the latest information on issues facing the kidney community and watch their Facebook Live discussion series. Consider also contacting NKF’s patient helpline at (855) NKF-CARES, (1-855-653-2273) or nkfcares@kidney.org.

Risa Simon is a preemptive kidney transplant recipient who will be celebrating 10 years of transplant success (and going strong) on June 8, 2020. In addition to volunteering as an NKF peer mentor and advocate, Risa is the founder of The Proactive Path and Transplantfirst Academy where she inspires fellow kidney patients to proactively secure their best life possible –the life Risa now lives. The one word that best describes Risa: “Grateful.”

Mike Stevenson received a kidney from his brother in 1996 after being diagnosed with glomerulonephritis and has been a proponent of trying to cure chronic kidney disease since. Mike serves on the Board for the Central Ohio, division of the National Kidney Foundation and also serves on the National Kidney Foundation Board.

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COVID-19, Kidney Disease and Minority Communities: Addressing the Disparities

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

You’ve been reading in my blogs about how COVID-19 is causing acute kidney injury in people with no history of kidney disease, and the devastating toll the virus takes on kidney patients, especially transplant patients. But COVID-19 is unduly devastating to minority communities and NKF has been working to put a spotlight on it to drive change.

Finding the Answers

Yesterday, along with the NAACP, NKF hosted a briefing for Congressional staff on Kidneys and COVID-19: Navigating Health Disparities in Minority Communities. A distinguished panel of experts discussed some of the reasons why minority communities are so disproportionately affected by coronavirus and outlined what we can do to help address these challenges.

First, the facts on minority communities and kidney disease: African Americans are 13% of the U.S. population, but represent 32% of those with kidney failure. Hispanics and Native Americans are two times as likely as Caucasians to develop kidney failure. The two main causes of kidney disease are diabetes and high blood pressure, which are more prevalent in African American and Hispanic communities. People facing housing insecurity are three times more likely to develop early kidney disease. Low income individuals are twice as likely as high income individuals to develop kidney failure.

What about the risks related to COVID-19?

During her presentation, Francesca Weaks, Policy and Research Manager at the NAACP discussed that in some states African Americans are six to seven times more likely to die from COVID-19 than white residents.  In states like Missouri and Michigan, the disparity between the percent of population African Americans represent versus the percent of those diagnosed with COVID-19 is nearly 30%.  Nationwide, African Americans represent 12.9% of the population, but have suffered 25.1% of deaths – roughly double their population share, among all American deaths where race and ethnicity is known.

What Can We Do?

Dr. Deidra Crews, Associate Professor of Medicine, Division of Nephrology, and Associate Director for Research Development, Johns Hopkins Center for Health Equity offered some possible reasons for the alarming impact on minority communities such as a lack of access to basic resources including food, water, shelter, and transportation; suboptimal housing conditions; employment in essential jobs with limited protections; lack of access to healthcare services; mistrust of institutions due to discriminatory experiences.

While this is a complex issue, there are some specific strategies NKF is advocating for right now to help. We’re urging the federal government to provide quality, disaggregated data on all tests, hospitalizations, discharges and deaths from COVID-19 so we fully understand the scope of the problem; ensure priority testing, contact tracing, vaccination, and funding to high-risk and minority communities and kidney patients; support long-term investments in public health infrastructure in traditionally under-served communities; and increase funding for kidney research and awareness. While we don’t have all the answers, we’re determined to help find some of the solutions.

Ask Questions Live Today

If you’re interested in learning more about  how COVID-19 is affecting minority communities, NKF is also hosting a Q&A webinar/Facebook Live today at 3:00PM ET. Ask questions live as an expert panel discusses the latest updates on the COVID-19 virus and how it is affecting African American and Hispanic communities, including are there genetic or other factors that make minority communities more susceptible to the virus; and what you can do to protect yourself.

Final Thoughts

COVID-19 has brought so many challenging issues to the forefront, and the issue of health disparities facing minority communities is one of the most difficult. And COVID-19 now intersects with kidney disease as disproportionately affecting those same communities. For my part, I will continue to steer NKF towards a long-term and focused outreach to communities at risk for developing kidney disease and the devastating complications which accompany it. This is just the beginning; I hope you’ll join me on the journey.

Please continue to check our COVID-19 resource page where we post all the latest information on issues facing our community in English and in Spanish. 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 join our free online discussion forums.

Be well and stay safe.

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My experience with COVID as a kidney patient

By Michael Phillips, Transplant recipient and Kidney Advocacy Committee member

I was looking forward to bringing some major changes to my family’s lives this year, including moving for a new job. I was also so excited about attending my first Kidney Patient Summit to advocate for kidney patients in Congress. I was excited to visit with my brother and surprise our parents for our father’s birthday in March. All that instantly changed with the pandemic.

I am a kidney transplant recipient, which I was blessed to receive on January 6, 2019, at Northwestern Medicine. A year later, I received great news that my kidney was functioning well and that I would not have to see the transplant team until 2021.

On March 7th, my spouse & I attended a family birthday party. Later that week, I saw a notice on our family chat that one of my cousins wasn’t feeling well. Then my spouse stated he was not either and started showing symptoms that included sore throat, a chill and tiredness. Later that week, he said he needed to go to the emergency room. I was so nervous, because as a transplant recipient, I was not going to be able to go in with him. I had to drop him off at the emergency room door. That was one of the hardest things I had to do in the 19 years that we have been together.

We live about five minutes from the hospital, so I went home to wait for a phone call. First, they checked to make sure he did not have the flu. They then administered a COVID-19 test and told him to quarantine for 14 days.

Quarantining is quite a task when you have a teenager and live in a two-bedroom apartment in Chicago. So, we did the best we could with our son in his room and me sleeping in the living room. We wore masks, washed our hands and stayed away from each other. The following week, as my transplant team was following up with recent patients, I started to develop symptoms as well. I was fatigued, restless, had no appetite, chills, etc.

My doctor said I might have COVID-19 and that I needed to come to the hospital to be tested. They also told me to bring a few days’ worth of clothes because they might keep me to monitor me and my kidney. They took my temperature, checked my oxygen level and gave me the test for the flu and COVID-19. It took two days for us to learn I had tested positive. I was so glad that the hospital sent me back home, but then our son also started showing symptoms as well.

A few days went by and my spouse was having trouble with a temperature of 104. I took him to the hospital again and I came back to wait for his call. I cried because I was so scared. He called to tell me what was going on. He was having shortness of breath and his oxygen level was at 78%. My husband has diabetes and he was on the verge of going into a diabetic coma.

There was also concern about me as a transplant recipient, even though both our son and I had a very mild case compared to my husband. The concern from my family and friends was heartwarming and overwhelming. There are still times that I don’t know how to express my feelings and gratitude to my family and friends for their support and love.

I am here to report we all have recovered quite well. I am fortunate to say that we are still able to salvage one of those major changes, relocating out of state for a new job. I count myself lucky to have done as well as I did. I lost a relative to COVID-19 and other several family members contracted the virus.

Since I recovered, I have been saddened to learn about the outsized impact that COVID has had on minority communities, as well as rural and poorer Americans, and how many who contract COVID-19 are also developing acute kidney injury (AKI). New data suggests that the mortality rate for kidney transplant patients from COVID-19 is a staggering 30% and that AKI is occurring about 9%of all coronavirus patients, many of whom now need dialysis.

African Americans and Latinos, particularly, have been horribly affected by COVID-19. In Georgia more than 80% of hospitalized patients were African American and mortality rates in Illinois, Michigan, Missouri, Arkansas and Indiana are twice as high among African Americans. In Kansas and Iowa, the infection rate was three times higher for African Americans and Latinos, respectively. Because of this, I am grateful to have the opportunity to share my story at a Congressional briefing later this month hosted by the National Kidney Foundation in coordination with the NAACP and other groups on health disparities around COVID and kidney disease.

As a kidney patient who had COVID-19, I ask my fellow patients to please take this seriously and follow the advice of health experts, their doctor and trusted resources like the National Kidney Foundation. There are many great resources for you to reference, such as NKF’s COVID-19 webpage and Facebook Live events. Please wear your masks, limit your exposure to crowds and quarantine yourself as much as possible.

We still have suffering from COVID-19 in many parts of the country, so let us pray for one another and put differences to the side. It’s time for unity. COVID-19 is nothing to play with and it affects people of all races, economic backgrounds, and those healthy and chronically ill.

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Grateful and 16 years Kidney Strong

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

This weekend marks Memorial Day, a traditional lake or beach weekend with all that this entails. It’s a time when we express our gratitude to the Veterans who have so nobly served us all to safeguard the freedoms we’ve come to count on. But this Memorial Day weekend will be a challenging one for all Americans, and especially for kidney patients.

Policies to protect patients

With the last remaining states reopening in time for the long weekend, it increases the risk to a kidney patient population especially vulnerable to COVID-19 infection due to compromised immune systems and multiple comorbid conditions such as diabetes, high blood pressure and heart disease, which increase their risk for COVID-19 complications.

In a detailed letter sent today to the U.S. Department of Health and Human Services, the National Kidney Foundation (NKF) and the American Society of Nephrology (ASN) urged the Administration to address the unique needs of kidney patients as the country reopens. Together, we called upon the Administration to implement a set of recommendations regarding COVID-19 testing, supplies and vaccination, dialysis, elective surgeries, organ donation, transplantation, and drug supplies.

We are grateful to the Administration for all they have done to protect patients during the pandemic, and I hope that the recommendations we put forward will offer an opportunity for safely reintegrating kidney patients into their communities during the reopening phases now taking place.

16 Years Kidney Strong

I’m not only feeling grateful to our Veterans this weekend who sacrificed their lives to keep our nation safe; I am also grateful to a family I will never know who made a sacrifice and saved my life.

I am 16 years kidney strong thanks to a deceased donor family who, despite their extreme grief, donated their loved one’s organs so that others, like me, could live. There is not a day that goes by when I am not grateful to this family for the kidney that has allowed me to live dialysis free for 16 years. I know I advocate a lot for increasing living and deceased organ donation in these blogs and elsewhere, but it’s because I am so grateful. I am also extremely aware that 12 people die every day waiting for a kidney. So, until every kidney patient who wants a transplant can receive one, I’ll keep at it.  I hope you’ll stand with me.  

Please continue to check our COVID-19 resource page where we post all the latest information on issues facing our community in English and in Spanish. 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 join our free online discussion forums.

Be well and stay safe.

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There’s no place like home for dialysis

By Melissa Bensouda, Kidney Patient and NKF Kidney Advocacy Committee Member

Melissa Bensouda

My appreciation for the phrase “There’s no place like home” has reached an entirely new level over the last six weeks of quarantine. Like many in the U.S., my initial thoughts of the COVID-19 pandemic in the early stages were centered around typical survival needs of food and water. However, as the days passed and the heat map of reported cases and deaths expanded across America, I was quickly reminded of the additional medical precautions that define “survival” for my family.

I originally chose nocturnal home hemodialysis because it allowed me to continue working full time and follow a more liberal diet. Don’t get me wrong, the same reasons apply 16 years later but the benefits of home dialysis right now are clearer than ever. It also gives me the comfort of not worrying about the risk of contracting the virus by dialyzing three times per week in-center, where human contact is not only inevitable but necessary.

I still have monthly appointments with my nephrologist, social worker, nurse and dietitian to review labs and treatments for the month, but all of this is now done through telehealth video calls to keep the staff and me safe. These accommodations, in addition to working from home, help allow me to preserve the limited energy I have so I can focus on staying healthy, online schooling for my kids, dialysis and advocacy.

New and current patients will need close and practical guidance on what success can look like. Rather than it being seen as another overwhelming task that further complicates their routine and depletes their energy, they’ll need to understand the benefits that can be achieved. Patient engagement will be key to shifting the patient mindset from one of just receiving a treatment to that of empowerment to drive their own health outcomes. I firmly believe this will be such a refreshing shift for patients, like it has been for me.

Last July, the President signed an Executive Order to launch the Advancing American Kidney Health initiative. One of the goals is to reduce the number of patients dialyzing in-centers through promotion of home dialysis and increased transplantation. The medical impact of COVID-19 on dialysis patients and its rapid spread across the U.S. provide even further backing to support this need for greater utilization of home dialysis. The question is now about execution.

This is where I particularly appreciate the leadership that NKF has been providing to make home dialysis more accessible to other patients who want to transition to it. They have been at the forefront by advising CMS and Congress on policies that will help more patients access home dialysis, especially during the COVID-19 crisis.

At the end of the day, before settling down on dialysis at home, I sit on my back porch and reflect on how grateful I am to have been empowered to care for myself and how I can do my part to encourage the same game-changing experiences I’ve had on home dialysis.

Melissa Bensouda was born and raised in Kansas City, MO and recently relocated to Austin, TX.  She began dialysis in 2002 and received a transplant in 2012 that lasted four years.  Melissa has since resumed home dialysis while actively pursuing a transplant.  She works full time in the financial services industry and in her spare time enjoys advocating for kidney patients and traveling with her children and granddaughter. 

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