Advocating for kidney cancer patients “on” Capitol Hill

By Curtis Warfield, Kidney transplant recipient and Kidney Advocacy Committee advocate

On Wednesday and Thursday Aug 12 and 13, 2020, I had to pleasure to once again speak to my members of the US Congress and their staff about kidney health policy priorities. NKF partnered with KidneyCan on their District Days. KidneyCAN is a leading kidney cancer awareness group for the kidney cancer patient community.

Curtis Warfield on Capitol Hill During the 2019 Kidney Patient Summit

I admit that while I had heard of kidney cancer, I was not too familiar with this disease. I went into the training seminars with an open mind to learning more about kidney cancer and to be a helpful advocate towards this cause. More than 73,750 people this year alone will be diagnosed with kidney cancer this year; more than 15,000 patients will die. However, more that 15.5 million Americans are alive today thanks to the kind of cancer research for which we were advocating.

Due to COVID-19, the training and all meetings were held virtually. 117 advocates represented 26 states from 8 different organizations. The Advocacy Education Seminar was held a week prior to provide training for Congressional meetings. NKF’s Matt Fitting along with Kimberly Serota of American Urological Association (AUA), and KidneyCan President and Co-Founder Bryan Lewis gave excellent presentation on the current legislative landscape and explaining what the “Asks” from Congress. Our four “Asks” were:

1) $3 billion increase in funding for the National Institutes of Health and National Cancer Institute.
2) $50 million for the Kidney Cancer Research Program (part of the CDMRP).
3) Continue to support legislative initiatives that contribute to robust, sustainable funding for medical research.
4) Continue to listen to the patient perspective on legislative policy matters.

The top two asks were the most important. Increase funding to the National Institute of Health (NHI) and National Cancer Institute helps in cancer research. Almost every major medical breakthrough in cancer can be traced back to NCI or NIH in the past 50 years. The 50 million for Kidney Cancer Research is for annual funding specifically for kidney cancer. Before 2015, there was no known money designated directly for kidney research.

My first meeting was supposed to be with Congressman Carson and his legislative assistant (LA). Unfortunately, Representative Carson had a last-minute call out and wasn’t able to attend. After the introductions with his LA, I shared the mission of KidneyCan and the facts of kidney cancer.  During the “asks” portion, I related how NHI has helped in kidney disease research along with my experience being on CDMRP panels and how effective they have been with research in kidney health. I also thanked him for the congressman’s support of the past bills that he as co-sponsored on kidney disease.

My meeting was with Senator Braun and his staff would be the only legislator meeting I had. I was paired with two patients with different types of kidney cancer. Their stories are amazing and they added that relatable personal story that is so important in these meetings. Senator Braun was very receptive during our meeting and knew the importance of funding NIH and CDMRP.  He mentioned about his recent cosponsoring of Living Donor Protection Act and the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act. This allowed me to relate my experience into the meeting and to personally thank the senator for his support for better kidney health.

Senator Todd Young was also called out and unable to meet but we were able to meet with one of his LAs. The assistant with was courteous and open to hearing us. She didn’t appear to have much knowledge about kidney cancer, giving us an opportunity to educate her on the importance of improved kidney health policies.

Since then, I followed up with thank you emails and social media posts. These too goes a long way with getting your information into the proper hands!

I was excited to have this chance to work with KidneyCan and NKF on behalf of the kidney cancer community. Since I started advocating, it is always exciting to have the chance to help educate my legislators and their staff on Capitol Hill or in the district office. It gives me a chance to help those who are unable to have a voice and to give forward to the gift of life that my living donor gave to me.  If you are interested in becoming an advocate yourself, email nkfadvocacy@kidney.org, and join us in our mission!

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Remembering Congressman John Lewis, Kidney Champion

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

Most Americans know the late civil rights icon Congressman John Lewis (D-GA) for his role as a freedom fighter, his stewardship of the Student Nonviolent Coordinating Committee and his leadership in organizing the 1963 March on Washington. Others know him for his record in Congress, fighting for voting rights, working for police reform, and combating health disparities.

But we at NKF know him as a faithful champion, leader, and friend of kidney patients. His contributions to our community are endless. He introduced legislation to strengthen kidney disease research and education, promoted innovation in dialysis care, and supported efforts to improve coverage of immunosuppressive drugs. He worked to increase research funding and shined a spotlight on health disparities. And he fought to make sure every American had access to high quality, affordable health insurance. Whether an issue was big or small, led by a Democrat or a Republican, if it was important to the kidney community, Congressman Lewis could be counted on for his support.

He was also the original “influencer.” He was so widely respected for his leadership on kidney health that when we would approach other Congressional offices about legislation, they would frequently ask, “Does Congressman Lewis support this?” His support brought others with it.

And who can forget his inspirational style? In 2016, the National Kidney Foundation honored Congressman Lewis at our annual congressional dinner. While making his remarks, every individual in the room watched in awe. Complete silence engulfed the room as he shared words of wisdom and appreciation.

Congressman Lewis was known for his phrase, “Make good trouble.” And by making good trouble for kidney patients, he made their lives immeasurably better. We cannot thank him enough for his leadership and support, and his presence will be missed in myriad ways.

Rest in Peace, Congressman. You will be missed.

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Immuno Bill Passes out of House Committee

Today the Immuno bill successfully passed a procedure hurdle in the House Energy and Commerce Committee. The House Energy and Commerce Committee marked up (aka reviewed and discussed) and reported out (issued their agreement to keep the bill moving to the full House) H.R. 5534, the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2019. In a large markup consisting of 29 other bills, the Immuno bill was reported out unanimously, with both Health Subcommittee Chairwoman Anna Eshoo (D-CA) and Ranking Member Michael Burgess (R-TX) speaking favorably about the bill.

In his opening statement, Ranking Member Burgess said, “I am especially appreciative of the inclusion of H.R. 5534, the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act, a policy that I have championed for nearly a decade. While Medicare allows certain individuals with end-stage renal disease to enroll in Medicare and will cover a patient’s kidney transplant, Medicare stops covering the immunosuppressive drugs after 36 months. Without these drugs, kidney transplant patients’ immune systems will reject their donated kidney and send them right back to dialysis. A kidney transplant is an investment in a patient’s future health and quality of life. We should protect that investment by covering these anti-rejection drugs past 36 months for kidney transplant patients who do not have other health insurance coverage. My bill will do just that, and I look forward to advancing it through the full committee to the House floor.”

After having been reported out favorably, the Immuno bill is now eligible for consideration by the entire House. It currently has 64 co-sponsors in the House, and 11 (plus one we expect to come next week) co-sponsors in the Senate. We continue to recruit Senate co-sponsors, and are advocating for the bill to be included in any fall package that may come together. We will keep you posted on its progress, and fingers crossed we get a vote this year.

Thank you all for your advocacy and focus on this bill over the long term. It is very rare for a bill to be written, introduced, and passed all in one year, so advocates like you who can be invested for the long-haul help ensure that important bills like this make it through the long, multi-year process and don’t get lost in the noise. Thank you all for your focus and dedication!

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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 — come rain or shine. But add COVID-19 into the mix and the mere thought of standing in line or being seated next to others can give pause to the best of intentions.   

On the other hand, imagining the impact of postponing blood tests can be equally concerning. This no-win predicament has caused some kidney patients to question their adherence to specific timelines dictated by their doctors.

What if each medical facility proactively communicated their pledge to follow strict COVID-19 safeguards? Could a heightened awareness and observable evidence ease patient apprehensions?

Let’s examine one patient’s recent visit to the lab. 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 current labs before they would refill his immunosuppressant medications. While Mike was anxious about going in for labs, he didn’t have much choice.

Much to Mike’s surprise, he reported, “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.” Mike also mentioned that he never saw other patients when he entered, and his phlebotomist was the only other worker in the lab while he was there. He also noted that his phlebotomist was wearing gloves and a mask. All in all, Mike’s experience was much better than he imagined — a wonderful example of how strategic safeguards can dispel patient fears.

Understanding “Safe Practices”  

Protective practices can go a long way in easing patient fears. That said, before pushing back on timely draws, call your lab and ask them to explain their COVID-19 safeguards. While infection control practices have always been important in the lab, they should proudly announce that they are following CDC guidelines for COVID-19, without exception.

Nonetheless, it’s our job to specifically ask how our labs are complying with COVID guidelines. Are they controlling social distancing in their waiting rooms? Are their phlebotomists wearing protective masks and gloves? Do they require patients to wear masks? How many patients are permitted into the lab at one time?

If you are not convinced your experience will be as smooth or as safe as Mike’s, we have a few suggested steps you can follow. First, after you confirm your lab is offering COVID-safe protections, make sure they haven’t added COVID testing at their site. Second, evaluate their responses to your questions. If they can’t give you the “peace of mind” you were looking for, consider another location or company—or explore remote alternatives.

Home Sweet Home

A remote approach would be to have your blood drawn from the comfort of your home using a mobile lab service. This is where a certified phlebotomist is scheduled to come to your home to draw your labs from your kitchen table, bedside, or while sitting in your easy chair listening to music or watching TV.

Prefer the phlebotomist never enters your home? Simply request that they meet you on your patio, porch, driveway—or inside your garage. You can even use your car’s window as a workstation by positioning yourself inside your car with your arm resting over the open-window’s ledge.

Whether you decide to have your labs drawn from the inside or outside of your home, never assume that the phlebotomist will be fully prepared for your unique situation. The goal is to ensure they understand your preferences and can safely accommodate your requests.

Communication is key and must work both ways. Be sure the lab has explained their account set up procedures, associated fees, and self-pay requirements. Mobile “draw-only” fees aren’t always covered by medical insurance—and fees can run about $65 per home visit. Be sure you are aware of associated fees to avoid surprises.

Remember: mobile labs often also visit nursing homes, so interview several companies to ensure the one you choose to use can offer you the best protection.

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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