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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COVID-19 Patients are Becoming Kidney Patients, but Most Americans are Unaware

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

COVID-19 doesn’t just attack a patient’s lungs, it damages the kidneys. But a new Harris Poll released by the National Kidney Foundation shows surprisingly low levels of awareness on both the risk of developing an acute kidney injury as a result of COVID-19, as well as the long-term effects of kidney damage. And Americans want the federal government to do something about it.

COVID-19 and Kidney Failure

I’ve talked about acute kidney injury before in this blog trying to draw attention to what could be a looming healthcare crisis on the horizon. A new survey we conducted with The Harris Poll shows an alarmingly low understanding of how coronavirus can permanently damage your kidneys. A patient can go into the hospital as a COVID-19 patient and come out as a kidney patient, but just under 1 in 5 (17%) Americans are aware of acute kidney injury as a result of COVID-19. And less than half (46%) are aware that COVID-19 will likely result in a higher number of Americans with chronic kidney disease and/or kidney failure. Once kidneys fail, dialysis or a transplant is needed to survive.

The poll also showed that Americans want the federal government to do something about it. Two-thirds (65%), are concerned over potential shortages of dialysis equipment from COVID-19, and most Americans, (87%), support the federal government stepping in to address any shortages found in hot spots. Support is also high (87%) for the federal government devoting more resources towards the diagnosis, prevention, and treatment of kidney disease and significantly increasing funding for kidney research at the National Institutes of Health (NIH) as a result of kidney-related illness resulting from COVID-19.

As we repeatedly hear from experts, COVID-19 will be with us for a while. How we act today to treat the complications of the virus, which can stay with a person for life, will greatly affect the future health of current and future kidney patients for years to come.

Disparities in Minority Communities

The data emerging on the extreme toll coronavirus takes on minority communities is disturbing, and one of the communities most affected is the Hispanic community. NKF is hosting a live webinar today, May 14th, in Spanish at 3:00PM ET to discuss the precautions kidney patients should take to stay safe as America reopens. Transplant surgeon, Dr. Juan P. Rocca, and nephrologist, Dr. Jaime Uribarri will address the precautions and considerations for kidney patients, transplant recipients, and caregivers before they return to work and other regular daily activities. COVID-19 Y LA NUEVA NORMALIDAD, will be moderated by award-winning journalist Merijoel Duran.

Final Thoughts

Isolation has left me with a lot of time for Happy Hour Zoom calls with friends, many of them from college. It’s been fun to reconnect and without the isolation it never would have happened. But I am also getting in some reading. Lately, I’ve been reading Erik Larson’s “The Splendid and the Vile: A Saga of Churchill, Family, and Defiance During the Blitz”. It’s a study of leadership in crisis. Conventional wisdom says that Churchill was confident the entire time, yet the only thing he was confident about was that they could not lose because it was an unacceptable outcome. That’s how I feel about coronavirus and the threat it poses to our nation, and to kidney patients. We must persevere through this incredibly challenging time because we cannot afford to lose one more person to a virus that targets the vulnerable in unforeseen ways.

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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COVID-19 Fears Don’t End After Being Tested

By Fiona McKinney, Kidney Patient and Kidney Advocacy Committee Member

A few weeks ago, I was interviewed for an article about “fears and concerns of contracting COVID-19 while receiving dialysis in an in-center clinic.” At the time, I said with great confidence that I had no fears because I trusted in the care of the clinic staff. My concerns centered more around the awareness that with kidney failure I have low immunity and needed to take extra safety measures while out in public, rather than the fact I was receiving dialysis at a clinic. The clinic staff practiced safety long before this crisis. They would ensure our safety now more than ever; I was certain of that.

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when a fellow patient showed early signs of the virus, the clinic took immediate, pro-active measures by sending him to the ER and closing off that section of the clinic. Since I had been located right next to him, I decided to self-isolate in case I contracted something and might pass it on. I worked from home for the next few days while we waited to hear back from the hospital—an agonizing three days.

Thankfully, the patient tested negative and the clinic wasted no time establishing a new protocol for similar situations. Dialysis patients are regarded as some of most high-risk for COVID-19. The clinic immediately started checking everyone at the front door before letting anyone in. A member of staff, in full protective gear, takes everyone’s temperature. If their temperature is normal, they are given a mask and allowed into the clinic. There are no exceptions.

That was March 18th, the week before the start of the big shut down in New York City when Governor Cuomo encouraged—then insisted—that all non-essential workers work from home and businesses close.

Those few weeks seem like a lifetime ago. On April 11th, I got tested for COVID-19 after developing a persistent cough. It came on suddenly during dialysis and turned into a coughing fit that wouldn’t go away. As part of the updated clinical procedure, and knowing I was high-risk, I was sent for testing the next day and told I couldn’t return to my regular clinic for at least two weeks. If I tested positive, I would be sent to one of two clinics, neither of which appealed to me. I wondered if I would survive and knew that if I tested negative, I would still be sent elsewhere because I am symptomatic. I was regarded as a “Person Under Investigation.”

That’s when my fear and concern began to seep in. I had never thought of being at an in-center clinic as a “comfort” until I was told I would have to leave. I was terrified of the alternative. I depended so much on the people I already knew and trusted to care for me. I felt so much more vulnerable going to a place I didn’t know.

This time, test results came back within 15 hours. I was negative for the virus but still symptomatic and was told it might be a false negative. I was sent to another clinic set up only for PUIs. We were stationed at least 20 feet apart and treated late at night after the regular schedule ended (sometimes finishing at 11 p.m.) Before the two weeks were up and I could return to my regular clinic, I got chest x-rays to make sure I didn’t have COVID-pneumonia. I didn’t and the coughing fits disappeared almost as suddenly and mysteriously as they first appeared. Sadly, when I got back to my regular clinic, several older people had died from the virus. Most had been from nursing homes.

Being on dialysis is a lifelong commitment to our health and ourselves. Its many challenges–the ups and downs of treatments, the side effects and pains, the debilitating exhaustion afterwards, to name a few—seem exacerbated now. Dialysis staff taking care of us remain on the frontline of our needs—not just during COVID-19—as are the dedicated drivers taking patients back and forth to their treatments, even now. Neither gets the credit they deserve and, like us, are extra vulnerable currently. These overlooked frontline workers should be included in our praise and gratitude. As we are constantly being reminded: We are in this together.

Stay safe and be well.

From your friends at the National Kidney Foundation:

As we move forward, we need to make sure that those who need to be tested get their results quickly, rather than waiting a day or more. Dialysis patients should not need to wait for their results and risk infecting others at their dialysis centers. As we begin to bring transplantation back for those seeking a kidney, we also need to ensure they get speedy results. After all, it does little good for them, or their living organ donors, to be tested days in advance if they risk getting sick in the meantime! Please sign our recently launched petition that calls on our public leaders to ensure they’re protecting kidney patients, in part by guaranteeing they have access to COVID-19 testing.

Fiona McKinney is originally from Dublin, Ireland. She was diagnosed with Glomerulonephritis when she was 16 years old and moved to New York City in the late 1980s to seek alternative healing methods, which supported her health for over 20 years. She then became a Polarity Therapy Practitioner and teacher in private practice. In April 2008, she developed ESRD and started dialysis. She is currently Director, Community Outreach and Manager of several marathon charity programs with Achilles International, an activities based non-profit for children and adults (including veterans) with various disabilities.

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Kidney Disease Hasn’t Hit Pause, Neither Have We

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

COVID-19 hits people differently and is especially hard on kidney patients. It is a dangerous illness that is putting patients’ lives at grave risk. The virus certainly hasn’t hit pause, but neither has kidney disease and nor have we.

At the State Level

As states continue to reopen, NKF’s local offices throughout the country quickly got to work hosting briefings for state legislators to ensure they fully understand the impact of COVID-19 on kidney patients. The briefings, led by local NKF medical leadership, cover what lawmakers and communities can do to help protect kidney patients during the pandemic, offers our assistance in helping kidney patients find the resources they need, and also set the stage for some of our other legislative priorities, like living donor protection laws.

NKF hasn’t hit pause on advocating for living donors and we continue to work with states to change laws to remove barriers to living donation. This week, NKF volunteers testified before the Missouri state legislature in support of a bill that would prevent discrimination against living donors seeking life, disability or long-term care insurance. We’re also working to ensure passage of HB46 in Kentucky, a bill that would grant paid leave to state employees who need time-off to recover from organ donation surgery. Thanks to NKF’s state advocacy efforts, 41 of the 50 states have laws on the books that offer some form of protection or relief to living donors. Removing barriers for donors is critical to increasing organ donation, which has been declining during COVID-19.

At the Federal Level

During a hearing this week, Congresswoman Jaime Herrera Beutler (R-WA) – a leading kidney champion in Congress – highlighted how COVID-19 is affecting all kidney patients, even those who don’t get infected.  View her poignant comments.

What Comes Next?

Our patients are worried, and so are we. Keeping people without underlying conditions safe is hard enough during a pandemic, keeping people with serious, chronic conditions safe when states are reopening is quite another. NKF has developed new resources for patients to answer patient questions covering everything from going out to eat, traveling and wearing a face mask to continuing with transplant and elective surgeries.

You can help us elevate the need to ensure kidney patients are protected at the state and national level by signing the petition NKF initiated last week. We’re advocating that life-critical “elective” surgeries (such as vascular access procedures) be given priority, patients be allowed to receive 90-day supplies of immunosuppressive drugs covered by Medicare Part B, testing for COVID-19 be increased and prioritized for kidney patients, patients with kidney failure retain their access to non-emergency medical transportation, and that living and deceased donor organ transplants be prioritized given the steep declines we’re seeing.

Telehealth Gets a Boost

Last month, NKF joined with several other stakeholders to advise the U.S. Department of Health and Human Services (HHS) on ways to address kidney patients’ needs during the COVID-19 Public Health Epidemic. Among other recommendations, NKF supported a proposal to improve Medicare coverage for telehealth visits without videos. This week, the Centers for Medicare and Medicaid Services (CMS) announced that doctors will now get paid the same whether the consultations are audio-visual or audio-only. This will help improve access for patients who have limited access to internet technologies, don’t have smart phones, or for older patients who just prefer to use a regular phone.

The New Normal

NKF is hosting a Facebook Live and Webinar: The New Normal: What kidney patients need to know as the country begins to reopen on Thursday, May 7th at 2:30PM ET/11:30AM PT. NKF’s Chief Medical Officer, Dr. Joseph Vassalotti and NKF’s President, Dr. Holly Kramer, will talk about precautions and considerations for kidney patients, transplant recipients, and caregivers before they return to work and other regular daily activities. Topics will cover questions like if kidney patients still need to quarantine themselves after the country reopens, when to restart regular lab visits, and what’s top of mind to most people, how quickly patients will be able to interact with their families again.

Final Thoughts

As we continue to hear about national chains and local shops filing for bankruptcy, unemployment rising and more dismal financial news, it can be tempting to just disregard the social distancing, handwashing and face masks in an attempt to get things back to normal. My concern is that if we reopen too soon, ​before states are really prepared to test ​all dialysis patients, transplant patients and their care teams, and trace and control this virus, it will only create more cases of coronavirus​ for high risk kidney patients, loss of life and ​higher costs to taxpayers. And that, to me, is not the definition of normal.

As always, please continue to check our COVID-19 resource page where we post all the latest information on issues facing our community. 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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Improving Transportation to Dialysis During a Pandemic and Beyond

By Torie Kranze, CEO of the National Kidney Foundation of Louisiana

The COVID-19 pandemic has further exacerbated transportation issues frequently faced by hemodialysis patients, many of whom are missing sessions because they “don’t have a ride.” Louisiana, and New Orleans in particular, has the highest rates of diabetes, hypertension and kidney disease in the country, which put kidney patients at higher risk for developing more serious coronavirus illness. Basically, New Orleans is a petri dish for COVID-19.

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Transportation problems were already one of the most common barriers faced by low income communities to accessing timely and necessary medical care. For hemodialysis patients staying healthy depends on reliable transportation because they are required to visit a dialysis center three times a week. There have been many studies indicating that easy access to transportation is associated with greater quality of life and supports improved patient outcomes.

With grant funding, the National Kidney Foundation of Louisiana (NKFL) is conducting a beta transportation study in New Orleans that will ensure patients have safe, reliable and on-time emergency transportation to and from dialysis. Our community’s stakeholders are focused on dependability and safety of rides, flexibility in ride scheduling, rider frustration with wait times and excessive costs.

NKFL staff has researched different transportation models and their outcomes. Over the next few weeks, we will identify a staff person at each dialysis unit in NOLA who will be responsible for executing the program in their unit and train them on how to use the system.

Once launched, we will review the overall success of the program and seek further funding to slowly expand the initiative throughout Louisiana.  The success of the program has broad implications and increases opportunities for sustainability by looking beyond current transportation options.

NKF is also working on the national stage to help patients secure safe and affordable transportation to dialysis. Last month, NKF sent a series of letters to  Medicare Administrative Contractors (MACs), asking that they pay for ground ambulance transportation for end stage renal disease (ESRD) patients who are COVID-19 positive or under investigation for COVID-19 and who may be unable to secure other transportation. As a result of that outreach, we have already heard from several MACs that they are looking at their policies for non-emergency ground ambulance transport. NKF is also working to ensure that dialysis patients who receive transportation through their state Medicaid program can either access their usual non-emergency medical transport (NEMT) or have an alternative option.

We ask that you and the rest of the kidney community keep sharing your stories of achievements and challenges with us, and please reach out directly if you need any assistance. We all stand ready to help you in this time of need!

REFERENCES:

Wilke, J. “Need a Ride?” Improving Transportation to Dialysis Treatment (Part 1). NKF Journal of Nephrology Social Work, Volume 40, Issue 1

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Protecting Kidney Patients as America Reopens

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

More and more states are now reopening or announcing their plans to do so. After months of sheltering in place, people with chronic diseases, like me, are very concerned about what needs to be done to make sure we all stay safe.

Sign Here to Save Lives

As states begin drafting and implementing plans to reopen businesses, government officials and healthcare providers must ensure that kidney patients are getting the care and the resources they need. In a petition NKF initiated this week, we’re advocating that life-critical “elective” surgeries (such as vascular access procedures) be given priority, patients be allowed to receive 90-day supplies of immunosuppressive drugs covered by Medicare Part B, testing for COVID-19 be increased and prioritized for kidney patients, patients with kidney failure retain their access to non-emergency medical transportation, and that living and deceased donor organ transplants be prioritized given the steep declines we’re seeing. I urge you to sign this petition which NKF plans to share with federal, state and local officials to make sure they address the unique needs of kidney patients.

Keeping the Docs Informed

As information continues to evolve around COVID-19 and its impact to kidney patients, it’s more important now than ever to keep doctors, and the entire interdisciplinary team devoted to caring for kidney patients, informed. The new NKF Clinical Digest, is a free resource which includes a compilation of the latest clinical information regarding COVID-19, curated by NKF subject matter experts. It also provides links to the most current patient resources and educational tools developed by NKF to support people living with kidney diseases through this crisis.

Staying Safe During Re-Opening

After months of sheltering-in-place, I’ve been thinking a lot about what reopening means to me as a kidney transplant patient. New data suggests that the mortality rate for kidney transplant patients from COVID-19 is a staggering 30%. Because I’m immune suppressed, sheltering in place and wearing protective gear when out has given me a temporary, protective bubble. There’s no question that once states reach the CDC reopening requirements they should reopen, but as a patient I can tell you it’s a little daunting to think about. I’m sure other patients are feeling the same way and to address this, NKF is hosting a Facebook Live and Webinar: The New Normal: What kidney patients need to know as the country begins to reopen on Thursday, May 7th at 2:30PM ET/11:30AM PT.

Also, if you or a family member has kidney disease, join us on May 2nd for a Virtual Education Series: Connect, Learn and Share. Health experts and kidney patients will discuss top of mind issues including telemedicine, transplantation, kidney-friendly eating on a budget, dealing with emotions and finding support, and the importance of physical activity for chronic kidney disease. You can join for just one session or all five, it’s free to register.

Final Thoughts

NKF will be closely following issues related to the reopening of our nation and next week we’ll share more of what we’re doing on a federal level to ensure the safety of our patients. In the meantime, if your state is opening please remember 100 million Americans with chronic diseases are counting on you to do the right thing, follow the CDC guidelines, and continue to practice social distancing.

As always, please continue to check our COVID-19 resource page where we post all the latest information on issues facing our community. 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 Medication During the COVID-19 Outbreak

by Haley Jensen, kidney transplant recipient and NKF patient advocate

Haley Blog PhotoAs a kidney transplant recipient, medication is one of the most essential parts of my ongoing care. I’ve been very “well-trained” since I received my transplant 11 years ago that I should never skip a dose without talking to my doctor. I take that advice very seriously as I risk losing my transplanted kidney if I miss a dose. Even though having a suppressed immune system is a scary prospect right now, the last thing I need is to add transplant rejection to the mix. With that said, it can be scary to think about what could happen if I cannot get my drugs because we have supply issues for immunosuppressants.

I’m fortunate to have good coverage through my health insurance, but I’m not able to build up much of a reserve in case there’s an issue with my order, a stressor in the best of times. But, these are not the best of times, so it’s easy to get nervous when I feel like I’m running low on doses. I’ve had a particularly complicated transition since I’m currently quarantining with my family across the country from my home in Boston. I was feeling a little paranoid when I came to visit before the crisis picked up speed, so I packed extra medication thinking I likely wouldn’t need it…and turns out I absolutely did. This was a big help initially as I figured out how to get a regular supply of medications in Colorado. Fortunately, I’ve used mail order pharmacies for years and can’t recommend them highly enough. It takes some time to set up with the pharmacy and will vary depending on which service you use, but once you’re set up, it’s such a helpful option to avoid trips to the pharmacy, which is particularly important for at-risk individuals like me. Using mail order has helped a lot with getting my critical medications during this time.

Another helpful change in recognition of these challenges is that due to COVID-19, increasing my refills to a 90-day supply for my immunosuppressants is currently an option! My insurance normally only allows me to fill a 30-day supply of my “specialty” medications. Having fewer delivery interactions and more supply on hand is a big weight off my mind. I found out about this exception through NKF, which has been instrumental in advocating for patients on many issues related to kidney disease in the current crisis and educating the community about precautions and available resources. I was immediately interested and called my insurance, and after a couple of calls between the agent and my doctor’s office (and plenty of patience), I received a 90-day supply of my immunosuppressants just a few days later.

Medication is the foundation for a kidney transplant recipient’s care, and even though COVID-19 has presented some challenges, patience,  persistence, and preparation make a huge difference. I’ve spent many hours on the phone, communicating back and forth between multiple pharmacies, insurance agents, and physicians to figure out how to get the care I need – all of whom have been determined to help. Although it has been confusing and a little frustrating at times, everyone I’ve spoken to has been kind and helpful, even in the moments I’ve lost my cool from the stress. NKF’s staff has been a constant support during this time, and their dedication to hearing patients’ needs and acting on them is truly inspiring. Even in this time of unknowns, the number of people who’ve shown tremendous dedication to supporting kidney patients has eased my mind about getting through this crisis, no matter how long it continues.

Haley Jensen has been involved with the National Kidney Foundation as a volunteer patient advocate and speaker since 2015. She is a kidney transplant recipient living in the Boston area and is passionate about serving kidney patients both as a volunteer and in her work at CVS Kidney Care. When she’s not thinking about kidneys, Haley is likely to be found exploring the great outdoors or digging into a good meal.

 

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What does lifting COVID-19 restrictions mean for kidney patients?

Open for Business

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

As the nation begins to see progress in our fight against COVID-19, some states will slowly begin opening but what does that mean for kidney patients? How can we ensure they are getting everything they need?

A Slow Opening

As states start to transition to slowly opening over the next few months, we may start to see a sense of normalcy. One of these changes will mean that elective surgeries start to move forward. But, it’s important to recognize that not all “elective” surgeries are created equal. There are some procedures deemed “elective”, like vascular access procedures, which are life-critical and those should take priority.

For dialysis patients, vascular access procedures are essential. When a patient is on dialysis, a central venous catheter is inserted into a major vein until a fistula or graft is placed in the arm vessels and ready for long-term use. These temporary catheters often need to be changed due to infection or other complications. While these procedures are done on an outpatient basis, they are still considered surgical procedures. Placement of long-term vascular accesses, including fistulas, grafts and peritoneal dialysis catheters placed in the abdomen, cannot be delayed and neither can surgeries needed to correct any complications related to these accesses. With a potential glut of “non-essential” surgeries waiting to take place, delays in placement of hemodialysis vascular access or peritoneal dialysis catheters will only increase the risk for hospitalizations, blood stream infections and death for this very vulnerable population and we urge hospitals to give them priority in the queue.

Urging the MACs to Do More

Many patients have been reaching out to us indicating they’re having a hard time securing greater than 30-day supplies of immunosuppressive drugs that transplant patients take daily. This is problematic because we don’t want patients to have to go back-and-forth to the pharmacy and increase their risk of coming in contact with someone infected by coronavirus. But, it’s also because the Centers for Medicare and Medicaid Services (CMS) have already said extending prescriptions for a drug that is reasonable and necessary is allowed. In a series of letters sent this week to the nation’s Medicare Administrative Contractors (MACs), which manage the day-to-day operations of the Medicare program, NKF advocated that they allow kidney patients to receive 90-day supplies of their Part B drugs. This extended supply permits a transplant patient, who is at an increased risk for developing life-threatening complications from COVID-19, to reduce the number of visits to pharmacies and hospitals and ensure an uninterrupted supply of these life-saving medications.

NKF also requested the MACs exercise their authority to pay for ground ambulance transportation for end stage renal disease (ESRD) patients. And right now, we’re tracking reports of patients being denied access to non-emergency medical transport through their state Medicaid program if they are positive with coronavirus or have any respiratory symptoms. While this affects only a small number of dialysis patients, having access to ground ambulance transport to dialysis appointments can be lifesaving. As a result of our outreach, we have already heard from several of the MACs which are revisiting their polices so that patients can get to their dialysis appointments and receive their necessary treatments. We’re making similar requests to private and commercial insurers as well.

Donating Life During a Pandemic

April is Donate Life month, a chance to recognize the importance of deceased and living organ donation in saving the lives of fellow Americans. I’m one of those Americans here today only because a family, during their extreme grief, saw fit to donate their loved one’s organs and save my life. I’m proud to say that I have recently joined the Board of Directors of Donate Life America and continue with a long tradition of NKF’s collaboration with this outstanding organization. NKF has been involved with Donate Life America from the very beginning. We were a founding member of Donate Life America (then called the Coalition on Donation) when it was first formed in 1992 and we’ve worked with the Donate Life America community since that time, including through the development of educational resources on living donation and serving on their Advisory Committee. I look forward to helping expand awareness of living and deceased organ donation so that anyone who wants a transplant has a chance to receive one.

Donating life-saving organs during the pandemic has unfortunately been a challenge. As we know too well, transplants are an opportunity that often cannot be regained once lost. While NKF worked closely with the federal government to classify transplantation as an essential surgery allowed during the pandemic, the number of transplants has still fallen compared to previous years, mostly due to a decline in living donor transplants. We recognize that our healthcare system had to give COVID-19 precedence; however, as the federal government considers the best path forward for reopening the nation, we’re making the case that hospitals should prioritize transplants while continuing to protect recipients and living donors from ongoing COVID-19 risks.

Kidney patients may be concerned about having a transplant and becoming immune suppressed during the pandemic. To address these fears, NKF is hosting a live Q&A webinar (also available as a Facebook Live) with renowned transplant nephrologist, Dr. Anil Chandraker, to discuss precautions and considerations for transplant recipients and living donors alike. Ask questions in real time as he discusses the latest updates on how COVID-19 is affecting transplant surgeries.

New Patient Series

Finally, as a patient I’m always looking for more information that can help me manage my disease. Typically, NKF hosts in-person educational workshops to keep our patients nationwide up to date with the very latest on kidney disease. We’ve converted these to a virtual format so that our patients can still stay connected.  On May 2nd, NKF is launching a new Virtual Education Series: Connect, Learn and Share. Health experts and kidney patients will share information and resources for people at all stages of kidney disease including topics like telemedicine, transplantation, kidney-friendly eating on a budget, dealing with emotions and finding support, and the importance of physical activity for chronic kidney disease. You can join for just one session or all five, it’s free to register.

As always, please continue to check our COVID-19 resource page where we post all the latest information on issues facing our community. 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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Shortages, Support and Staying Safe during Medical Procedures

Masks and Gloves - Kevin's blog

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

Dialysis Equipment Shortages

In last week’s blog I highlighted one of the underreported stories of COVID-19, which is that the virus wreaks havoc on your kidneys and a whole group of people with no previous history of kidney disease now face an acute kidney injury, which may require dialysis. We are tracking reports of shortages of necessary dialysis equipment such as machines, solution and disposable supplies like cartridges needed for continuous renal replacement therapies to treat patients who experience acute kidney injury as a result of coronavirus. Our medical leadership are working with hospitals and health centers to provide temporary solutions and guidance for this urgent issue; and our government relations team has been in conversations with the U.S. Department of Health and Human Services as well as other government officials to identify ways to increase availability of this important equipment.

Supporting the Health and Wellbeing of All Americans

NKF joined with other disease nonprofits representing 120 million Americans with pre-existing conditions to urge Congress to enact legislation which supports the health and wellbeing of all Americans, while also slowing the spread of COVID-19. NKF, along with 32 other groups, called on Congress to re-open enrollment in the Affordable Care Act marketplaces so that patients can access insurance coverage; provide additional funding for state Medicaid programs; require testing, treatment, vaccines, and recovery services to be provided at no-cost to consumers; and provide subsidies for individuals who have lost employer sponsored coverage, among other things. These critical points are necessary to ensure that patients get the help they need to stay safe during this public health crisis, and that our healthcare system remains viable and available to them after it’s over. Read the full letter here.

Support through Facebook

There’s a lot of information circulating about COVID-19 and it can be hard to separate fact from fiction. NKF is hosting another Facebook Live this week featuring an expert on the front lines: Dr. Sumeska Thavarajah, nephrologist and an assistant professor of medicine at the Johns Hopkins University School of Medicine. Dr. Thavarajah will provide the latest considerations for people with kidney disease, including those on dialysis and transplant recipients, and address questions such as immunity to COVID-19 after you’ve already had it, can medications prevent COVID-19, and the best way to manage telehealth visits with your doctor. Join us later today, Thursday, April 16, 2020, at 3:30 p.m. ET/12:30 p.m. PT, register here. If you don’t have Facebook you can also join via a webinar.

Staying Safe during Medical Procedures

I recently heard about a kidney transplant recipient, a man my age who had his transplant as long as I’ve had mine, die from COVID-19 and that hit very close to home. The increased risk for severe consequences and death from coronavirus is something kidney patients, and others with chronic diseases, live with and it’s important that everyone does their part to help keep vulnerable populations safe, at every touch point along the way.

I recently had to get my labs done because my nephrologist wanted to adjust my medication dosage. I went to the hospital prepared: gloves on and wearing a mask. I even brought my own pen from home because I knew there was sign-up sheet for patients. I went early and was the second person to arrive.  I took my necessary precautions only to discover that the phlebotomist was not even wearing a mask, only gloves. This small touch point could make the difference to a patient contracting coronavirus or not. It’s critical that all healthcare workers who come into contact with kidney patients, and others like us, be provided with all the personal protective equipment necessary to keep us safe.

To reduce exposure from other patients in a hospital or laboratory setting, it’s also important to allow remote laboratory visits for those most at risk. NKF has been advocating for the Medicare program, as well as private insurers, to pay for a lab technician to come directly to the patient’s home to collect their blood, instead of having the patient go to an outpatient lab, dialysis facility, or transplant center. Changes like these could help keep patients safe and are important considerations during this national health crisis.

As always, please continue to check our COVID-19 resource page where we post all the latest information on issues facing our community. 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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