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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.

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

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 had to go back on Medicare, which didn’t cover the whole cost of dialysis [...]

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|

Support New Kidney Care Act

While working in Abu Dhabi, I found out I had kidney disease and needed to begin dialysis. I was able to continue working abroad for a few more years, but a 2017 trip to the hospital showed me it was time to move back home. Since then, I’ve noticed that a better, more coordinated system is needed to help [...]

June 12th, 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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