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Patient Stories in the News2021-06-24T11:27:59+00:00

Patient Stories

Stay up-to-date on the latest kidney care news with letters to the editor and op-eds written by our members.

Kidney patients need protections restored

I was 14 when my father was diagnosed with End Stage Renal Disease, or kidney failure. I witnessed the suffering, anxiety, and helplessness the disease brought upon my family. I also witnessed the financial burden of medical bills, which became unaffordable once my father was forced off of his marketplace insurance. Traditionally, private insurance companies cover dialysis for 30 [...]

May 21st, 2024|

Help dialysis patients

End Stage Renal Disease (ESRD), commonly called kidney failure, changed my life. I was first diagnosed with kidney disease in 2014, and my kidneys totally failed in 2020 after a battle with covid-19. I relied on dialysis, the treatment which replaced my kidneys' blood-filtering function, from 2020 until August of 2023 when I received a kidney transplant. As an [...]

May 7th, 2024|

Support the Restore Protections for Dialysis Patients Act

Kidney failure, or end-stage renal disease (ESRD), affects Americans of all ages. I was 14 years old when I received my diagnosis. I’ve been on dialysis for many years and have received two transplants in the process, but perhaps more stressful than dialysis has been paying for all my healthcare expenses. I’ve relied on private insurance for much of [...]

May 6th, 2024|

Letter: Medicare failed us

As a program coordinator for the Kidney Foundation of Central Pennsylvania, I have made it my life’s mission to help kidney patients manage their condition. I see or hear stories of the inadequate standards of care currently practiced at clinics, hospitals and specialist practices in this country. Many patients I talk to are frustrated and feel like they have [...]

May 6th, 2024|

Rep. Van Drew, please help dialysis patients

At 20 years old, I was diagnosed with end stage renal disease (ESRD), or kidney failure. Two years later, I began receiving dialysis. I was employed upon diagnosis, but lost my job before beginning dialysis. I began dialysis on Medicare. Since Medicare only covers 80%, and my disability income disqualified me from Medicaid, I could not cover the remaining [...]

May 2nd, 2024|

Support the Restore Protections for Dialysis Patients Act

To Whom It May Concern, Like many patients with End Stage Renal Disease (ESRD) – or kidney failure – my diagnosis came as a shock. About a decade ago, I went to my doctor feeling ill. I discovered that my kidneys were failing and I had to get on dialysis, the costly but life-saving treatment which replaces my kidney [...]

April 16th, 2024|

Poor care? Blame Medicare payments

My husband Raymond and I met on a blind date. Three months later, his kidney unexpectedly failed, and I have walked alongside him on his patient journey ever since. My husband’s life depends on dialysis, the treatment that does what his kidney can’t do. Unfortunately, we confronted problems with our dialysis center that reflect larger trends caused by insufficient [...]

April 14th, 2024|

Letter: Congress needs to act to restore protections for dialysis patients

In the United States, dialysis treatment should be affordable. Unfortunately, inadequate coverage for dialysis often plunges patients into debt. Dialysis should not bankrupt you. In our system, Americans on dialysis almost always wind up using Medicare. Since Medicare only covers 80% of the bill, patients must figure out how to cover the remainder. I was on dialysis for 10 [...]

April 11th, 2024|

Congress must not leave kidney patients behind

I have chronic kidney disease. Thankfully, my kidneys are still functioning, but they are at risk of failure any time. I became a dialysis patient advocate because I may eventually have to withstand the difficulties that come with dialysis in America. I am fighting for my future and for the future of all dialysis patients in America. I am [...]

April 9th, 2024|

Reimbursement rates for health care professionals needs to be increased

As a patient with End Stage Renal Disease (ESRD), or kidney failure, I know how health care workforce shortages can affect patients. I have been on dialysis for 7 years. At the clinic where I receive dialysis – the life-saving treatment which replaces my kidney function – any staff shortage can mean the difference between a smooth treatment and chaos. America [...]

April 7th, 2024|

Letter: Dialysis debt a burden; Congress must act

We Americans with kidney failure must accept the fact that we will be in medical debt for the rest of our lives. To pay for dialysis treatment, some patients keep working and use private insurance. Others live in states that supplement the other 20%. For me, although I have my husband’s private insurance, we still owe thousands of dollars [...]

April 2nd, 2024|

U.S. Rep. Grothman: Save Wisconsin dialysis patients

Kidney failure changed the course of my life. I began dialysis, the exhausting treatment kidney failure patients need to survive, three months pregnant with my son. I received a kidney transplant, which ultimately failed, and I have been on dialysis for a total of nine-and-a-half years. It’s been an arduous journey. Dialysis costs upwards of $100,000 per year, so [...]

March 17th, 2024|

Abilene Reflector-Chronicle: Letter to the Editor

Dear Editor, When I served as my grandfather's caregiver during his dialysis treatments, the most frustrating challenge was the difficulty we faced dealing with Medicare. Slow payments and limited access to services were all too common for us, but thankfully we had access to supplemental insurance that helped cover costs. For many dialysis patients, private insurance plays an important [...]

March 14th, 2024|

DPC Advocates Make Their Voices Heard!

DPC’s patient advocates are working hard to make their voices heard through media outreach, by sharing their stories through op-eds and letters to the editor. Coast to coast, patients are letting their local legislators know about the issues that are important to them, and how their votes in Congress affect their lives. Check out the amazing work of our advocates, [...]

February 21st, 2024|

Americans on dialysis need Congress’ help

When I began dialysis, I took advantage of Medicare, private insurance and charity funding to pay for my treatment. However, I often speak to other patients who do not have access to supplemental insurance and end up being stuck paying the 20% that Medicare does not cover. Paying out-of-pocket for dialysis is simply impossible for most Americans. For years, [...]

February 19th, 2024|

Letters: Dialysis patients need protections

Dialysis patients often open the mail to find thousands of dollars worth of medical bills they can’t afford. Without the proper insurance, affording dialysis treatment is all but impossible. I began dialysis back in college, so at the time, I took advantage of my mother’s private insurance to cover costs. However, I was kicked off of my mother’s insurance [...]

February 15th, 2024|

Letter to the Editor: Dialysis patients need some help

Dear Editor: How would you feel if your life-saving medical treatment was out of reach? Well, a recent Supreme Court decision allows private insurance companies to put new dialysis patients in a difficult position by severely limiting coverage in the first 30 months of treatment, even though patients have long been guaranteed full coverage within that time. Congress must [...]

February 15th, 2024|

Restore hope to dialysis patients

Last year, I wrote to you about my journey as a kidney patient after my diagnosis in 2017 and I’m writing to you again to call on Congresswoman Stephanie Bice to protect kidney patients like me. Recently, a ruling the U.S. Supreme Court made weakens protections for dialysis patients by allowing private insurance to lessen coverage and force patients [...]

February 10th, 2024|

Help dialysis patients

Americans should not have to fight tooth and nail to pay for lifesaving health care. Yet, this is an unfortunate reality for dialysis patients in America. When I began dialysis, I lost my private insurance since I could not work anymore. Relying on Medicare with little family support, I struggled to pay for my required treatment. Traditionally, private insurance [...]

February 2nd, 2024|

Congress: Prevent Dialysis Patients’ Unnecessary Suffering

Kidney failure touches the lives of millions of Americans. Dialysis and transplants are the only treatments for this life-altering disease. I have been on dialysis for 10 years, which has been a physical and mental roller coaster. In the first five years of treatment, I relied on employer-provided insurance. This private insurance provided comprehensive care, including dental and eye [...]

January 23rd, 2024|

Letter: Dialysis patients need Congress’ help

As a leader in the Kidney Foundation of Central Pennsylvania, I see how much financial concerns weigh on the hearts of kidney patients. People become overwhelmed by the out-of-pocket costs of dialysis treatment, and that stress can become too much, worsening health outcomes. We need to make it easier for dialysis patients to pay for treatment. They have productive [...]

January 22nd, 2024|

Letter: Protect NH dialysis patients

Protect dialysis access To the Editor: All dialysis patients are required to have Medicare as their primary insurer after 30 months from when they start dialysis, but the law has always allowed us to keep our private insurance until then if we wanted. Now, a Supreme Court decision from 2022 may allow private insurers to reduce coverage of many [...]

January 22nd, 2024|

Letter: Give dialysis patients a hand

Dear editor, My father, Bill Robinson, passed away 10 years ago from complications related to End Stage Renal Disease (ESRD). Yet, he lived a relatively full, healthy and active life. Dialysis allowed him to continue living and working for 10 years. As his primary caretaker, I saw firsthand the problems afflicting kidney patients. I witnessed many patients struggling to [...]

January 21st, 2024|

Letter: Help dialysis patients

When you start dialysis, which I was on for three years, there is a lot of uncertainty and fear. However, worrying about immediately changing health insurance plans after diagnosis hasn’t typically been a problem for most patients, because private insurance companies had to cover treatments for 30 months before the patient automatically joins Medicare. However, the U.S. Supreme Court [...]

January 21st, 2024|

Dialysis patients should not be singled out

Kidney failure is not a death sentence. With the right healthcare, Americans on dialysis can live energetic, productive lives. Unfortunately, paying for dialysis in America has become a Herculean task. Medicare only covers 80%, and the remaining 20% can cost thousands per year. Private insurance usually covers the first 30 months of dialysis before patients’ transition, by law, to [...]

January 21st, 2024|

Protect dialysis patients from shocking bills

Last year I wrote to you about the shocking moment when my young daughter was diagnosed with kidney failure. Thankfully, I was able to be her part-time caregiver with the help of our primary physician through her dialysis treatment and the many health challenges she faced. The last thing dialysis patients should worry about is money. That’s why I’m [...]

January 19th, 2024|

Letter: dialysis funding

When your kidneys fail, dialysis is your hope for a better future. But affording dialysis can be a tricky ordeal because Medicare, which all dialysis patients are required to have as their primary provider after 30 months, only covers 80% of the treatment costs. For me, paying the other 20% was hard because, as someone under the age of [...]

January 18th, 2024|

Give dialysis patients time to plan

Kidney failure changed my life. I’ve learned a thing or two after spending 18 years on dialysis, receiving a kidney transplant, and spending years as an advocate for my fellow patients. In the initial 30 months of dialysis, dialysis patients have traditionally had the option to keep their private insurance in order to plan for their inevitable transition to [...]

January 18th, 2024|

Letter: Congress must help dialysis patients

Since coming to Congress last year, Rep. Marie Gluesenkamp Perez has worked across party lines to help our community. I hope she’ll do so again by working to ensure that Washington’s kidney disease patients, of which I am one, can have access to proper insurance. After a Supreme Court ruling, private insurance companies may be able to weaken what [...]

January 18th, 2024|

Letter: We Must Protect Dialysis Patients

Those with a sudden and serious illness that requires immediate medical attention are called “crash” patients. My husband Raymond was a crash patient when he was diagnosed with End Stage Renal Disease, or kidney failure. Luckily, Raymond had private insurance, so he didn’t have to worry much about the cost of his life-saving dialysis treatments when he started. Eventually, [...]

January 18th, 2024|

Idaho Statesman: Dialysis

At the young age of 25 years old, I had to accept the fact that I would need dialysis treatment to survive. Like many Americans with kidney failure, I was too sick to continue working. I lost my employer-provided insurance soon after I stopped working. Since I did not immediately qualify for Medicaid, I was forced to pay the [...]

December 15th, 2023|

Congress Must Help Kidney Patients

My wife was diagnosed with kidney failure in January of 2022. I was her primary caregiver until she passed away in June of this year. Now, I dedicate my time advocating for Americans with kidney disease. A pressing problem facing kidney patients in America is the difficulty paying for dialysis, which keeps patients alive. It can cost hundreds of [...]

December 2nd, 2023|

Dialysis

Ten years ago while working for an airline my life changed. I was diagnosed with kidney failure, and I learned I'd need dialysis to survive. Eight years of dialysis and a transplant later, I am writing now to advocate for kidney patients everywhere. For three years, I received dialysis in Dubai, United Arab Emirates. Despite initial difficulties, my dialysis [...]

November 19th, 2023|

Medicare Must Increase Access to Improvements in Dialysis Care

For people who live with a chronic illness, one of the most powerful words in the English language is hope. As a more than 20-year dialysis patient with end-stage renal disease, otherwise known as kidney failure, hope is a driving force in my life. My condition may never be cured, but new treatments are under development that could ease [...]

October 6th, 2023|

Local View: Bridging the Medigap

Published in the Lincoln Journal Star We hear endless stories in the news about challenges in our health care system, but oftentimes the effects feel abstract. As someone who has dedicated their career to improving the medical care and outcomes of patients with kidney disease through transplantation, I’ve seen firsthand how devastating kidney failure can be, particularly for Nebraskans [...]

July 18th, 2023|

Nebraska resident rallies for LB-32

NEBRASKA -- Fifteen states do not require insurers to offer Medigap policies to people under 65 who are already enrolled through Medicare according to AARP. Medigap helps patients to afford deductibles and other out-of-pocket costs with policies such as Medicare Part B. However, Nebraska is one of those states that doesn't require it to be offered, to the shock [...]

June 21st, 2023|

New bill offers hope for Nebraskans with kidney disease struggling to afford coverage

We are in a critical moment for health care in Nebraska. According to the Nebraska Hospital Association, health care costs are on the rise and likely to stay high, in part due to inflation affecting hospital equipment, labor shortages and other factors. As these costs rise, hospitals are overflowing with patients despite falling numbers of COVID-19 cases. These pressures add up to [...]

May 10th, 2023|

No Escaping Kidney Disease

To the Editor: Life with kidney disease is all I’ve ever known. I was born with this hidden illness and started receiving dialysis treatments at just 25 years old. Over the years, I’ve experienced the various hurdles patients face both as a kidney patient and as someone who is legally blind. Before my kidney transplant in 2018, I did [...]

December 29th, 2022|

Blankenship: Kidney Patients Need Better Access to Coverage

Learning you have kidney disease can be overwhelming, something I found out myself while camping in 2003. It’s hard for patients to get the information they need about living with kidney disease, and for many patients the costs of treatment are excessive. Starting on dialysis brought with it a lot of changes, one of them being that I had [...]

December 21st, 2022|

Protect Dialysis Patients’ Coverage

I have been on dialysis treatments for almost 13 years due to end-stage renal disease (ESRD). Kidney disease can be a lot to handle with frequent dialysis treatments, doctor's appointments, and medications. On top of the medical responsibilities, I must ensure I have the proper insurance coverage. Initially after my diagnosis, I was fortunate to be covered by my [...]

December 18th, 2022|

Dialysis patients across America are counting on Congress

In October 2016, kidney disease forced me to start dialysis and retire from my career as a firefighter paramedic. This disease runs in my family, with my brother and mother also suffering. I currently require dialysis treatment three times a week and have to travel 72 miles round trip to the center for five-hour-long treatments. Dialysis costs me both [...]

November 15th, 2022|

Texas dialysis patients under 65 need help getting coverage

I've had a progressive kidney disease for several years and my doctor eventually referred me to a nephrologist to help manage my kidney health. Fifteen months ago I needed to start dialysis and I am fortunate because the treatments have gone very well. I’ve largely been able to get the coverage I need through Medicare and my supplemental Medigap [...]

November 3rd, 2022|

CA Dialysis Patients Need Lawmakers’ Help

Finding out I needed to start dialysis two years ago was tough to accept. I’d always been an athlete, so I felt like this wasn’t something I’d have to face. But after low kidney counts for more than 5 years, I had to start treatments. Beyond difficult treatments, the financial burden they come with is enormous. I’m fortunate, however, [...]

October 31st, 2022|

Dialysis patients need better insurance coverage

Editor: I have seen firsthand the hardships kidney patients face through both my daughter’s and father’s diagnoses. My daughter’s kidneys failed at age 23, and for over two decades, I was her caregiver while she was in and out of the hospitals and on dialysis. This wasn’t an easy task, but thankfully she received a kidney transplant almost two [...]

October 27th, 2022|

Time is running out: Dialysis patients need Congress to act

“Life, Liberty, and the Pursuit of Happiness” are the inalienable rights which our government was created to secure. Thomas Jefferson famously penned these words when authoring the Declaration of Independence, but nearly 250 years later, those rights are at risk for dialysis patients thanks to a recent Supreme Court ruling. This June, in Marietta Memorial Hospital Employee Health Benefit Plan [...]

October 26th, 2022|

Send lifeline to kidney dialysis patients

At 21, I was diagnosed with end-stage renal disease, which meant my kidneys were failing. Until my diagnosis, I was completely healthy, in the middle of nursing school and working full time. The onset of this disease was the beginning of a series of hospitalizations, surgeries and dialysis treatments. I began dialysis while I waited for my kidney transplant. [...]

October 11th, 2022|

Equal Justice Remains Elusive for Kidney Patients. Congress Can Help.

Four simple words sit above the entrance to the Supreme Court: “Equal Justice Under Law.” That short phrase, though, carries immense weight. It is a promise to the American people that we will receive fair treatment in our justice system, and serves as a principle to guide people in power. For dialysis patients – who already face massive health disparities – [...]

October 4th, 2022|

Kidney patients need Congress’ help

I know we can count on Congressman Carlos Giménez to support this important legislation. I’ve dealt with health issues my entire life. I was born with Polycystic Kidney Disease (PKD), which has caused me to have multiple organ transplant surgeries and receive life-saving dialysis treatments. And, in addition to a successful liver transplant, I’ve had two kidney transplants that my body rejected, and [...]

September 9th, 2022|

Congress needs to protect kidney patients following Supreme Court decision

I recently joined other dialysis patients in meetings with Congress to discuss the challenges we face. One of the key topics we covered was how hard it is for patients to get access to the benefits and coverage we need just to survive. Those challenges are about to get much bigger for many patients after a recent Supreme Court [...]

August 28th, 2022|

Dialysis patients need expanded coverage for leftover costs

In 2017, I had a below-knee leg amputation, during which it was discovered my kidneys had deteriorated. These health crises forced me to undergo physical rehabilitation and begin dialysis treatments for my kidneys. While receiving dialysis, I started writing my book on navigating midlife, which was a form of mental therapy. My book discusses my triumphs and trials as [...]

August 21st, 2022|

Dialysis patients counting on Congress

It’s quite the experience being a kidney patient on dialysis. There’s always new information to monitor and communication to track between various medical providers, dialysis centers, and health insurance entities. It’s important for patients to educate themselves on kidney disease to best serve themselves and others who are on dialysis. One area of dialysis that can be hard to [...]

August 8th, 2022|

Medigap bill can help kidney patients

When I started helping my dad after his kidney disease diagnosis, I thought it would be straightforward, taking him to the dialysis clinic and just generally caring for him. As I started learning more about the challenges kidney patients face, though, I remember looking around at all of the younger patients at his dialysis clinic and asking myself, “How [...]

August 7th, 2022|

Legislation Offers Hope for Kidney Patients Struggling with Coverage

Kidney disease is a life-changing diagnosis for patients and their families. I experienced it first-hand as my husband went through dialysis and a kidney transplant, and I continue to see it every day working with kidney patients who are facing issues with treatments and cost. One of the most heartbreaking realities I see working with patients is that many [...]

July 21st, 2022|

Dialysis Patients

Life with kidney disease while I was working in the United Arab Emirates was very different compared to what it is in the U.S. I had to receive all of my treatments in the hospital, and because the coverage options available weren’t the same as they are here, I had to pay for my treatments out of pocket. I [...]

July 19th, 2022|

Letter to the editor: Much-needed relief for dialysis patients

How much money do you make in an average year? Think about it for a minute. Now, imagine that entire annual salary, and then some, is gone in a month. Why, you may ask? Because those are the costs dialysis patients incur on a monthly basis. While all dialysis patients are covered by traditional Medicare, this only covers 80 [...]

July 13th, 2022|

LETTER: Making a difference for kidney patients

DEAR EDITOR: I recently participated in my second advocacy day meetings as part of Dialysis Patient Citizens, and am still overjoyed with the discussions I had with several of our distinguished members of Congress and their staff. I spoke briefly about how my own experience as a dialysis patient took away so much of my independence, and what so [...]

July 1st, 2022|

Aid dialysis patients

Families have a lot in common, and something mine shares is kidney disease. Both my late mother and I who have suffered from this have had to receive life-saving dialysis treatments that allowed our bodies to continue to function. At the beginning of my dialysis journey, I had insurance through my employer, which covered the costs of these pricey [...]

June 20th, 2022|

Letter: Medigap bill offers lifeline to young dialysis patients

Dear Editor: Starting dialysis at a young age was hard. I had only recently finished high school, and adjusting to life on dialysis when I was still a teenager was overwhelming. It was even more difficult because I didn’t have reliable access to affordable Medigap coverage for the costs Medicare didn’t pay. Not every state requires Medigap plans to [...]

June 19th, 2022|

Your Views: Wisconsin kidney patients need financial help

My life with kidney disease has been one filled with battles. In 2010, I had a double transplant surgery and received a new kidney and liver. Unfortunately, the transplant kidney failed three years ago, and I needed dialysis treatment. These life-saving treatments can be time-consuming, and patients often find themselves unable to work. Working and being on dialysis can [...]

June 19th, 2022|

Letter: Congress should follow NY’s lead on dialysis coverage

Finding out my kidneys were failing was shocking. During a surgery to remove a portion of one kidney affected by cancer, things took an unexpected turn. Rather than losing a small portion of function in one kidney, I was left with one kidney only functioning at 20 percent. Thanks to an excellent nephrologist, though, I was able to put [...]

June 18th, 2022|

Kidney Patients Struggling to Receive Coverage

My husband’s journey with kidney disease forever changed my life. Over the past five years, we have seen countless doctors, traveled many miles for medical appointments, and both of us had lifechanging surgeries. At age 39, my husband began dialysis treatments for his failing kidneys, a side effect of his lifelong battle with diabetes. We knew he would eventually [...]

June 12th, 2022|

Congress should OK Medigap expansion

I have fought an uphill battle with kidney disease for almost half my life. At 24, I started receiving dialysis treatment and three years later received a kidney transplant that kept me off dialysis for about five years. But unfortunately, I needed potent anti-rejection drugs that ultimately gave me cancer and weakened my immune system. Thankfully, I recovered from [...]

June 10th, 2022|

Constituents on Dialysis Need Leader McCarthy’s Help

Editor, Being diagnosed with kidney disease when I was just 16 turned my life on its head overnight. Kidney failure can cause multiple medical complications. Partial loss of my vision and hearing, more than 17 years of dialysis treatments, infections, an enlarged heart, and eventually a kidney transplant have been just part of the journey. For all of these [...]

May 27th, 2022|

Dialysis, Kidney Transplant Patients Need Lawmakers To Help

Fo­cal seg­men­tal glomeru­loscle­ro­sis (FSGS) caused my kid­neys to fail nearly 30 years ago. Since then, I’ve been on and off dial­y­sis as FSGS and the treat­ments it re­quires have taken their toll on my health and sev­eral trans­plant kid­neys. The treat­ment process and the costs as­so­ci­ated with it have been egre­gious. The high cost of med­ica­tions to keep trans­plant kid­neys healthy [...]

May 5th, 2022|

Dialysis patients under 65 face major cost hurdle

Starting dialysis felt like being swooped into a cage with no warning. At the height of quarantine during the COVID-19 pandemic, I found out the chemotherapy treatments for my breast cancer had contributed to my kidneys failing and I needed to start on dialysis immediately. The next two weeks were a lonely and frightening experience, and I wouldn’t have [...]

May 3rd, 2022|

Guest: National Kidney Month provides reminder of cost hurdles for dialysis patients

The month of March marks National Kidney Month in the U.S., an opportunity to bring awareness to something that affects more than one in seven adults, and a chance to reflect on the struggles kidney patients across the U.S. face every day. Currently, kidney patients face an uneven playing field, and a lot still needs to be accomplished in order [...]

March 30th, 2022|

Support S 2194

March 28, 2022 The Honorable Joshua Miller, Chair The Honorable Bridgett G. Valverde, Vice Chair The Honorable Valarie J. Lawson, Secretary Members, Senate Health and Human Services Committee Rhode Island General Assembly RE: Support S 2194 Dear Chair Miller, Vice Chair Valverde, Secretary Lawson, Members of the Committee: As a kidney dialysis patient residing in Woonsocket, a volunteer Patient [...]

March 28th, 2022|

HB 430 – Letter of Support

February 28, 2022 The Honorable Bart Rowland, Chair The Honorable Derek Lewis, Vice Chair House Banking & Insurance Committee Kentucky General Assembly 700 Capitol Avenue Frankfort, KY 40601 RE: HB 430 - SUPPORT Dear Chair Rowland, Vice Chair Lewis and Members of the Committee: My name is James O. “Hap” Strunk. I am a resident of Whitley City, serve [...]

February 28th, 2022|

Patients with Kidney Disease Need Medigap Expansion Bill

Kidney disease is a life-changing diagnosis. Since I went into renal failure, I’ve believed that patients should only have to worry about the care they need to get well, not the high costs that come with it. Unfortunately, that isn’t the reality I’ve encountered, given my insurance and Medicare don’t cover the full costs of the life-saving treatments and [...]

February 9th, 2022|

New Bill Will Give Dialysis Patients the Security They Deserve

For six and a half years, I lived through the daily struggles of dialysis and the challenges of getting quality care before I finally received a kidney transplant in 2009. The coverage I received while on dialysis simply wasn’t enough to pay for all of the medications I needed because I was under the age of 65 and did [...]

February 4th, 2022|

New Bill Give Dialysis Patients Certainty and Security

The last thing that folks living with End-Stage Renal Disease (ESRD) should have to worry about is whether they can afford to pay for their treatments. As someone who has been on dialysis since 2009, I’ve met a number of patients who live with a financial burden and uncertainty because they do not have access to Medigap insurance. Thankfully, [...]

January 10th, 2022|

Louisiana Kidney Patients Counting on New Care Coordination Bill

My kidney disease diagnosis four years ago meant a lot of things, including the beginning of many doctor appointments, dialysis treatments, and medications. While these changes keep me alive and well, there are certain areas of care for dialysis patients that are lacking. For starters, I have found myself navigating between doctors to communicate my needs and make sure all of [...]

December 15th, 2021|

Support Sen. Young’s Kidney Care Act

A kidney disease diagnosis is life-changing. It means undergoing hours-long dialysis treatments several times every week, spending more time at doctors' appointments, and completely overhauling how patients live their lives. The stress of that change is only complicated by the fact that for a lot of dialysis patients, the responsibility for tracking treatments, medications and communicating with their nephrologist [...]

November 28th, 2021|

Letter to the Editor: Medigap expansion bill can address coverage concerns

Being a nurse practitioner gives me a glimpse into patients’ daily struggles that aren’t always obvious from the outside looking in, like the problems patients face when their coverage suddenly changes, and they can’t afford the medications they need. This is something I’ve particularly noticed for dialysis patients. Since a lot of them rely on Medicare for coverage, they [...]

November 25th, 2021|

Readers React: Bill would help dialysis patients under age 65

Dialysis has involved a lot of waiting since I started it years ago. Treatments take hours at a time, and I’m left waiting for the call to finally tell me that a donor kidney is ready. It simply cannot come soon enough. However, I at least have coverage for my treatments through my wife’s job, in addition to Medicare, [...]

November 10th, 2021|

LETTER TO THE EDITOR: Law would make life easier for dialysis patients

When I first went into the hospital because of a heat stroke a few years ago, I never would’ve imagined it would lead to me starting dialysis. After 19 days in the hospital, I was back just one day after being discharged. Before long, doctors were forced to put me into a medically induced coma while I experienced heart [...]

November 7th, 2021|

I’ve had a kidney transplant and know these bills will help others

Before I was diagnosed with polycystic kidney disease while I was pregnant with my son, I knew nothing about kidney disease. I never would have imagined all the different things that go into treating it, and what it would eventually be like to go on dialysis. Once I did start dialysis in 2016, I found myself in a whole [...]

October 30th, 2021|

Cover the Medigap

As a dialysis patient, one-time kidney transplant recipient, and a dialysis tech of 12 years, I’ve seen kidney care from just about every angle. I was fortunate to have insurance through my job which meant I didn’t have to deal with the out-of-pocket costs and hassle that sometimes come with Medicare, but that’s not true for everyone. Instead, they [...]

October 21st, 2021|

TX Kidney Patients Eager for a Transplant Need Medigap Expansion

It took me two doctors' visits to get a liver transplant. It was a fairly seamless process all things considered, but the medications eventually cost me my only kidney and forced me onto dialysis. Getting a kidney transplant couldn't be more different, Just getting on the list feels like I'm running in circles, with constant tests and never any [...]

October 14th, 2021|

Kidney disease patients need coverage, new Medigap bill

I’ve battled kidney disease for over half my life, experiencing one failed kidney transplant and 16 years on dialysis — all before my 30th birthday. Fortunately, I’m able to receive full coverage for the cost of the treatments and medications I need to fight my kidney disease. However, I know there are other patients out there who can’t say [...]

October 13th, 2021|

Dialysis patients need support from lawmakers

Dear Editor:   This December marks three years in my battle with kidney disease. My kidney failure diagnosis was hard to pin down, and without my husband, I am not sure I would still be here. My diagnosis came with a lot of things you’d expect: many hours spent in doctors’ offices and at dialysis treatment centers. What I didn’t [...]

October 8th, 2021|

New bill offers much help for kidney patients

For four years, I have served my community as a social worker dedicated to helping dialysis patients. I have seen both the everyday problems kidney patients face and the larger issues with how our health care system handles them. There are a lot of obstacles that require more attention. Many patients on dialysis require trips to centers for treatments [...]

October 4th, 2021|

New bill would help dialysis patients

While I’ve never been diagnosed with it myself, kidney disease has touched just about every facet of my life. At home and at work, I’ve experienced firsthand just how much it can change a person’s life. From the treatments and waiting for a transplant, to the overwhelming financial challenges that can come with it, dialysis brings its own set of difficulties [...]

September 29th, 2021|

Dialysis patients need help to close Medicare gap

I’ve seen firsthand why Medigap coverage expansion is needed for dialysis patients, which is the goal of HR 1676, a bill introduced in Congress earlier this year. Since my kidney transplant in 2018, I have gone to dialysis clinics all over to help prepare kidney disease patients for their own transplants. Everywhere I go, I hear from patients struggling [...]

September 21st, 2021|

Alabama kidney patients need Congress to support Medigap Expansion Bill

Since I started dialysis in 2018, I’ve been lucky to have coverage that supplements Medicare and helps to keep my costs down. Even with that added coverage, though, I’ve noticed it is tough to afford all of the medicines I need. For patients without the additional coverage I have, that cost is even higher. When Medicare doesn’t pay for [...]

September 10th, 2021|

Legislations would provide help for dialysis patients

I’ve lived on dialysis for 22 years, but there was a time when my kidney disease almost took my life. Through dialysis and a failed kidney transplant, though, I’ve done my best to stay upbeat and am excited to get another transplant kidney soon, hopefully. While it’s been a tough road, I’ve at least had the coverage I need [...]

September 8th, 2021|

New Kidney Care Bills Vital for Expanding Coverage & Reducing Costs

Starting dialysis seven years ago was a bit of a rude awakening. I had to accept that my day-to-day life had changed, and that I’d now need to devote significant time each week just to go through treatments. One of the most challenging parts of the process, though, was learning the ins and outs of the healthcare system. It [...]

September 3rd, 2021|

LETTER: Expand Medigap and help dialysis patients get the care they need

I was only 19 years old when I was diagnosed with kidney disease. Because I was under 65, Medicare didn’t cover the full costs of treatments and medications throughout my 10 tough years on dialysis, and I was forced to make difficult choices between the care I needed and basic needs like groceries. A new bill, however, the Jack [...]

August 29th, 2021|

Dialysis Patients Need Help. A New Medigap Bill is the Perfect Place to Start.

In 2004 my dad had his first dialysis treatment after flatlining from a heart procedure. We were not sure he would make it through the night as his organs were shutting down, but we were told that dialysis would help and at the time, we wanted to just do whatever was needed to save him. When my dad left [...]

August 24th, 2021|

LETTER TO THE EDITOR: Medigap Bill A Welcome Change for Mississippi Dialysis Patients

Kristal pictured with her husband, Ernest Higgins. Photo by Cameron B. Potts My kidney transplant failing in 2017 changed my life. I went back on dialysis for the first time since 2012 and was spending more time in the hospital than I had before. Then, I lost my job and the insurance coverage it provided, and I [...]

August 12th, 2021|

Medigap Expansion Bill Vital to Making Treatments Affordable

Something felt a little off after my daughter was born. I started feeling more exhausted each day after work, and at one point one of my elementary school students even pointed out that I didn’t look well. I had always been perfectly healthy, so I never expected that I’d be diagnosed with kidney disease. But, after a referral to [...]

July 29th, 2021|

Letter to the Editor: Kidney disease patients are in need of new Medigap Expansion bill

As a kid, I remember watching my dad receive his dialysis treatments at home. Kidney disease runs in my family, and tragically it has taken not only my dad’s life, but many others in my family before their time. I received my own kidney disease diagnosis almost 20 years ago. Medical costs are rising and continue to rise for kidney [...]

July 28th, 2021|

Bill helps kidney patients get needed coverage

Starting dialysis in 2016 showed me there are a lot of challenges patients with end-stage renal disease (ESRD) face. There are major lifestyle differences, and treatments take several hours multiple days each week. While I can do these treatments from home at night, lots of other patients need to make trips to their local clinics, which takes an exhausting [...]

July 21st, 2021|

Kidney patients need Medigap expansion

While my husband was on dialysis, and even since his kidney transplant, getting affordable coverage has felt impossible. If Medicare doesn’t cover something, we have to scramble to afford it, which was a massive challenge given his dialysis treatments got up to $15,000 and medications can cost $3,000 each month. This shouldn’t happen. We need lawmakers to pass bills [...]

July 16th, 2021|

Letter: Congress should expand Medigap coverage

For a lot of patients, starting dialysis means not being able to work anymore. Thankfully, with my job I can work from home when I’m doing my treatments, which has been hugely beneficial in helping me stay employed and get the coverage I need. The situation is very different for a lot of other patients, though, who can’t continue [...]

July 15th, 2021|

Voice of the Reader: Support the Jack Reynolds Memorial Medigap Expansion Act

To the Editor: There is a bill which would expand Medigap Coverage to Illinois patients who need it. My story with kidney disease goes back more than 10 years to when my mom stepped in and donated one of her kidneys to me. While that was an invaluable gift on her part, that transplant failed a few years ago, [...]

July 7th, 2021|

Dialysis patients need new Medigap bill

I was diagnosed with End Stage Renal Disease (ESRD) in 2016 when my kidneys began to fail. While I was undergoing dialysis, I received full coverage for my treatments and medications through disability insurance, but many other patients aren’t fortunate to have coverage and are left to pay massive medical bills. Thankfully, help is on the way. The Jack [...]

July 1st, 2021|

Letters to the Editor

One certainty in life is that all of us will be tested by circumstances out of our control. For me, it was kidney failure, and since 2007 I've been on dialysis. I'm very blessed that I was able to receive this care, and that I've been able to live a healthy and happy life thanks to the support of [...]

June 27th, 2021|

Medigap expansion could clear major obstacle for kidney patients

After three difficult years on dialysis, I received a kidney transplant last fall through the Department of Veteran Affairs as a Marine Corps veteran. While I don't have dialysis treatments anymore, I keep touch with everyone I met at my dialysis center and find new ways to help patients. In these conversations, one topic seems to come up more [...]

June 24th, 2021|

To the Editor: Medigap coverage important for people in need

To the Editor: As a single mom, starting dialysis required a lot of shuffling so I could attend treatments while juggling my responsibilities as a parent. Thankfully, it didn’t require big out-of-pocket payments to cover what Medicare couldn’t, since Michigan requires insurers to provide dialysis patients like me with access to Medigap. I know the reality is different for [...]

June 21st, 2021|

Expanding Medigap coverage

I first started dialysis just over 20 years ago, and in that time I’ve done both home and in-center dialysis treatments in addition to receiving two kidney transplants. Along the way, I’ve been fortunate enough to have good coverage that kept my treatments affordable. As I’ve met other dialysis patients, I’ve realized just how rare that is. Many people [...]

June 21st, 2021|

Letter: Medigap expansion bill offers relief to kidney disease patients in need

I have struggled with kidney disease my entire life. I was diagnosed with End Stage Renal Disease when I was 7 years old, and I finally went on dialysis in 2010 at age 26 when my kidneys failed. While I was able to receive full coverage from private and public insurance providers due to the fact that I am [...]

June 19th, 2021|

Medigap expansion bill would ease burden on dialysis patients

Last year was tough for everyone as we navigated life during a pandemic and did what we could to stay home. Unfortunately, things got even tougher when I found out I had to start dialysis treatments again. While I was initially able to stop dialysis in 2010 thanks to a kidney transplant, complications meant that I had to start [...]

June 11th, 2021|

New bill would expand coverage to kidney patients who need it most

For 10 years, I acted as my father’s in-home dialysis provider, and having the chance to be there for him was one of the most rewarding experiences of my life. While he passed away last year, I’ve been able to channel that energy into helping and educating other patients who are in the same position he was. Caring for [...]

June 9th, 2021|

Former firefighter advocates for fellow renal failure patients

Former firefighter Terry Peeler of Livingston has released a statement urging Alabama lawmakers to support new bipartisan legislation that offers coverage for dialysis patients. Peeler’s career as a firefighter ended when he was diagnosed with kidney failure. “Starting dialysis in 2016 was unbelievably difficult,” Peeler said. “It brought my career as a firefighter to a sudden halt, and meant [...]

June 8th, 2021|

Passing kidney care legislation will help dialysis patients

When the COVID-19 pandemic first hit last year, it forced a lot of people out of work. That was especially the case for dialysis patients like me, as our kidney disease means we’re at a higher risk for getting seriously sick if we get COVID-19, and we’ve had to take extra steps to stay safe. While I’m looking forward [...]

May 12th, 2021|

Andrew Conkling: Expanding Medigap coverage for dialysis patients is a welcome and necessary change

Kidney disease has been a major part of my life from the very start. I was born with just one functioning kidney and, defying doctors’ expectations, made it to age 25 before I needed to start dialysis treatments. Through my own experiences with dialysis and my conversations with other patients in dialysis clinics across the United States in the [...]

April 29th, 2021|

New Bipartisan Effort Could Provide Much-Needed Coverage for NYC Kidney Patients

Living with kidney disease, undergoing dialysis, and ultimately traveling out-of-state to receive a kidney transplant provided me with a harsh lesson in how challenging life with End-Stage Renal Disease (ESRD) can be both physically and financially. It’s already difficult having to go through all these treatments even before considering the financial burdens that come with them. The costs are [...]

April 28th, 2021|

Letter: Medigap Expansion Act needs Delaware’s support

Life on dialysis is hard. It involves several hours-long treatments every week and puts a major strain on everyone involved. It’s a frustrating process that I wouldn’t have been able to get through without my family. The last thing you want to worry about while going through dialysis is the cost. The treatments already weigh on patients and families [...]

April 13th, 2021|

Letter: Pass Medigap expansion

I never considered the possibility of having kidney disease until I ended up in the emergency room with a life-threatening illness. The doctors told me I was “toxic” and said I had developed kidney disease due to hypertension. Not long after, I started dialysis treatments. Being on dialysis meant I couldn’t work full time, so I wanted to find [...]

April 2nd, 2021|

BETTER Kidney Care Act the Best Move to Defend Patient Access to Care

As the COVD-19 pandemic continues to cause problems for Americans across the country, many people have been concerned about their ability to access the care that they need. Naturally, many patients are worried about where they can turn if they fall ill, and what it could potentially cost them. Being able to see all the necessary care providers is [...]

October 30th, 2020|

BETTER Kidney Care Act – Improving Access to Transplants for Kidney Patients

From the moment I was diagnosed with kidney disease, I was fortunate to receive outstanding care and support from my providers. I know that it played a key role in my ability to get a transplant, as I live in an area with one of the longest wait times in the country. In fact, I was encouraged to get [...]

October 30th, 2020|

New Research Highlights Need for Coordinated Care Legislation

Despite months of research and progress, it still seems like we learn something new about COVID-19 every day, ranging from how it affects patients with certain pre-existing conditions to new information on the long-term health risks the virus poses to those who contract it. Now, as more information continues to come to light, it is imperative that we use [...]

October 20th, 2020|

OP-ED: New bill would help improve care for dialysis patients

My daughter’s kidneys failed when she was just 23 years old, marking the beginning of a long and difficult path on dialysis. Her treatments were incredibly straining and gradually weakened her until, about ten years ago, she had to undergo open-heart surgery because of the stress her dialysis treatments put on her circulatory system. Throughout the entire process, though, [...]

October 7th, 2020|

Change is Hard – Benefits of Care Coordination vs. the Status Quo

For many patients, adjusting to life with kidney disease means change. From new diet restrictions to multiple weekly dialysis treatments, being diagnosed with kidney disease can create a sudden and difficult shift in a person’s daily lifestyle. Unfortunately, for many patients on dialysis these changes are made all the more challenging by a lack of a truly cohesive, coordinated [...]

September 30th, 2020|

New bills offer opportunity to help Iowa dialysis patients

As we move toward the fall season, the COVID-19 pandemic still poses a major threat to people living here in Iowa, as well as others across the U.S. With public health still top-of-mind, it is important that we do everything we can to protect high-risk patients, especially those living with end-stage renal disease (ESRD). ESRD is a serious condition [...]

September 17th, 2020|

Letter: Do what is right for the chronically ill

I am a lifelong Oregonian and suffer from stage 5 chronic kidney disease, meaning I depend on dialysis to live. Through my treatments, I've seen first-hand the importance of coordinated care for myself and others with end-stage renal disease (ESRD). Care coordination is a system where each of a patient's health care providers proactively share information with each other, [...]

September 10th, 2020|

Advocating for dialysis patients is close to my heart

Since 2009, I have served as my father’s in-home caregiver as he undergoes dialysis treatments. In that time, we’ve had the incredible fortune of working with supportive and attentive medical staff who helped us as we learned about life with dialysis. Because of this great medical care, my father was, until a recent amputation, able to maintain an active [...]

September 1st, 2020|

We Need More Better Kidney Care Act Support

Throughout the COVID-19 pandemic, there has been much attention devoted to improving care for high-risk patients in Oregon and throughout the nation who have chronic health problems which hinder their ability to fight off the virus. During all of this, however, relatively little attention has been given to the difficulties faced by those with end-stage renal disease, who depend [...]

August 26th, 2020|

Bill offers support for Iowa dialysis patients

High-risk patients have been one of the focal points of the public response to COVID-19. Now, as our leaders continue responding to this epidemic, they must pay particular attention to the impact their decisions will have on patients with end-stage renal disease, or ESRD, who rely on dialysis treatments to live.  Living with ESRD poses many unique challenges, as [...]

August 24th, 2020|

Letter to the Editor

You might be hearing a lot about what’s not happening in the nation’s Capitol right now but one thing that is happening is the BETTER Kidney Care Act—to expand care coordination opportunities for dialysis patients. The COVID-19 pandemic has placed the health of kidney disease patients at risk more than ever before, while also showing the many challenges to ensuring their continuity of their care. Here’s [...]

August 16th, 2020|

Difficult year for medical community

This has been a difficult year for the medical community as we do everything we can to combat the spread of COVID-19 while protecting the most vulnerable patients. One especially vulnerable group right now is patients with end-stage renal disease (ESRD), in large part because they see so many different doctors. They need to regularly see a primary care [...]

August 13th, 2020|

Opinion: New bill would provide boon to dialysis care

Protecting patients in the U.S. has been at the top of the public mind since the start of the COVID-19 outbreak. Since March, people both here in Missouri and across the rest of the country have been taking steps to help curb the spread of the virus and keep each other safe, particularly those with other health issues that [...]

August 10th, 2020|

Letter to the Editor – BETTER Kidney Care Act

Since she was just three days old, my daughter has struggled with kidney failure. After over 30 years and three transplants, it’s become clear that more needs to be done to help kidney patients. Care coordination in particular needs a lot of attention. Without effective communication between doctors, things get harder for patients, and they can suffer serious health [...]

July 7th, 2020|

Coordinated Care Bill Can Ensure Patients Receive Needed Treatment

Sadly, Paul Van Vooren passed away after this article was published. As a patient with Von Hippel-Lindau (VHL) who has undergone 65 surgeries, including a kidney transplant, and received dialysis treatments for over eight years, I know the importance of coordinate care for dialysis patients. My treatment for VHL sometimes requires me to travel hours to the Mayo Clinic [...]

June 10th, 2020|

New Bill Offers Help for Georgia’s Dialysis Patients

Dialysis has forced me to make major adjustments, requiring me to make three weekly trips to the clinic for four-hour treatments while I continue my years-long wait for a kidney transplant.  I work hard to maintain my diet, get proper exercise, and stay on top of all of my treatments, but many dialysis patients can’t because they have diabetes [...]

June 4th, 2020|

Carla Smith: Congress should pass the BETTER Kidney Care Act

Dear Editor: For over three years, dialysis has been a central part of my life. Three times every week I go to the dialysis center, where I check in on my friends who also get treated there and catch up on my favorite cooking shows during my treatment. The doctors and nurses at my facility are incredible. They’re like [...]

May 25th, 2020|

YOUR OPINION: New Bill Would Help Struggling Dialysis Patients

When my doctor told me I had kidney disease, I wasn’t aware of just how serious it was. Two years later, though, I passed out and woke up in the emergency room, where doctors said I was experiencing both kidney failure and heart failure. Shortly after, I started dialysis. Fortunately, I was able to do in-home dialysis and remain [...]

May 24th, 2020|

Letter: Will Rep. Lee support bill to help dialysis patients?

After being diagnosed with end-stage renal disease in 2014, I’ve experienced dialysis treatments at home, in a clinic, and have even traveled with my dialysis equipment. While dialysis created a lot of anxiety for me at first, I have had the benefit of working with an excellent treatment team that is sensitive to my needs as a patient and [...]

May 23rd, 2020|

Letters: Action Needed to Help Alabama Dialysis Patients

One of the most difficult moments of my life was finding out that, despite being only 24 years old, my kidney was beginning to fail. After years of dialysis and a kidney transplant, I learned through my experiences in the health care system what needs to be improved. Doctors and nurses need a better care coordination framework to more effectively [...]

May 20th, 2020|

Opinion: BETTER Kidney Care Act can help Missouri dialysis patients cut down on costs

When I first learned I had kidney disease, I was fortunate to not have to start dialysis right away. For about six or seven years, my doctor worked hard to keep me healthy, doing everything he felt was safe before finally recommending that I begin dialysis treatments. When I finally began dialysis treatments at my local clinic, I found a [...]

May 15th, 2020|

Help for Dialysis Patients

Too often, we forget about the personal and mental health struggles facing patients with serious medical illnesses. This is especially true for dialysis patients, who often have to upend their lives to receive the treatments they need. I’ve experienced this personally when after three years of balancing dialysis treatments and doctor’s appointments, I was forced to close a successful [...]

May 13th, 2020|

The Coronavirus Outbreak Puts Dialysis Patients At Risk

While most people with COVID-19 experience mild symptoms, dialysis patients like me who have a weakened immune system are more vulnerable to serious complications from the highly contagious virus. Now more than ever, immunocompromised patients with kidney disease must have coordinated medical care to ensure they are receiving the best health care possible from all of our medical providers. [...]

May 8th, 2020|

Letter: The BETTER Kidney Care Act is an important step forward

My experience with dialysis extends four years: from when my first kidney transplant failed in 2014 to when I received my second transplant in 2018. During that time, the most frustrating thing I encountered was a lack of care coordination. I bounced between several doctors who treated my various health issues independently. Every doctor’s visit required me to provide [...]

May 8th, 2020|

Advancing Care Coordination for Dialysis Patients: An Update

Efforts to modernize the delivery of quality care to dialysis patients reach several milestones in 2020: Medicare’s first care coordination program for kidney care, the Comprehensive ESRD Care Model, expires at the end of this year; providers have been invited to participate in a new program, the Comprehensive Kidney Care Contracting Model; end-stage renal disease (ESRD) patients will, in [...]

April 20th, 2020|

Care Coordination Fixes One of the Biggest Flaws in the American Health Care System.

As a dialysis patient, it has become clear to me that one of the biggest flaws in the American health care system is the disjointed way care is often provided to patients. If patients have chronic conditions alongside other health complications, it can be exceedingly difficult to navigate the different doctors and hospitals we need in order to receive [...]

April 1st, 2020|

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