Dialysis Patient Citizens News
ESRD Community Honors the Legacy of Congressman John Lewis
Our nation recently lost one of its most iconic and stalwart champions for justice in Congressman John Lewis. He dedicated his life to fighting for civil rights and social justice for all Americans, and his legacy will forever be remembered. Congressman Lewis was also one of the kidney community’s most consistent, trustworthy, and respected allies, and we join the nation in mourning his passing. Throughout his more than three decades in the U.S. House of Representatives, Congressman Lewis was a champion for patients with End-Stage Renal Disease (ESRD) and worked [...]
Care Coordination Fixes One of the Biggest Flaws in the American Health Care System
Gloria Rohrer lost a leg after needing multiple surgeries when her kidney transplant failed. Rohrer later lost her eyesight in one eye while vacationing in Florida, which could have been avoided with proper care coordination. She could have shut down and become angry with the world, instead Rohrer became a stalwart advocate for patient access to care coordination services, so that others can avoid similar complications.
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 problems as a result. We’ve experienced this in my daughter’s care from the beginning. Medications and doses occasionally got mixed up when she was a baby, and recently [...]
Dialysis Patient Citizens Files Lawsuit Against HHS Secretary Alex Azar and CMS Administrator Seema Verma Over New Regulation That Undercuts Dialysis Patient Access to Affordable, High-Quality Care
WASHINGTON, D.C., (June 22, 2020) -- Today, Dialysis Patient Citizens (DPC) filed suit in the United States District Court for the District of Columbia against Health and Human Services Secretary Alex Azar, Centers for Medicare and Medicaid Services Administrator Seema Verma, the U.S. Department of Health and Human Services, and the Centers for Medicare and Medicaid Services in opposition to a discriminatory new federal regulation that will limit the ability of hundreds of thousands of End-Stage Renal Disease (ESRD) patients to access affordable, high quality treatment. “ESRD [...]
Letter: Helping Dialysis Patients
When my kidney issues started in 2009, I was fortunate enough to receive a donor kidney from my mother, which lasted until 2017. Unfortunately, new medications caused that kidney to fail and ultimately forced me to go on dialysis. Since starting dialysis I’ve worked with a great team at my local clinic that truly cares about me and even helps to coordinate dialysis treatments for me with other clinics when I travel for work. I’ve noticed recently, though, that I’ve had to play a bigger part in [...]
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 dialysis patients. Even when I had a care coordinator, I found the system never really worked for me. Whether it was managing medications, doctors’ appointments or even my [...]
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 in Rochester, MN. I also have my primary doctor in Sioux Falls that helps me maintain my active lifestyle, despite needing to rely on dialysis. From my conversations [...]
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 or other serious conditions alongside kidney disease, and they need help coordinating their care. A new bill working its way through Congress could help. The BETTER Kidney Care [...]
Medicare Removes Important Protection for Dialysis Patients in Managed Care Plans
The Centers for Medicare & Medicaid Services (CMS) last week issued a regulation for Medicare Advantage (MA) plans that eliminates time and distance limits from network adequacy requirements for dialysis facilities. Network adequacy requirements for health plans ensure that patients can have access to all necessary providers with reasonable promptness. Time and distance limits prescribe a maximum driving time or distance in miles that a consumer must travel to get to a doctor or facility. The limits are higher in rural areas. CMS replaced the time and [...]
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 a second family, and often pick up on medical problems before they even start doing tests. Even when I suffered a major stroke at the dialysis center, they [...]
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 active in my community and my church. Now, even after receiving a transplant, I’ve found my calling as an advocate for dialysis patients, and I am passionate about [...]
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 ensures my treatments are tailored. Congress is working on a bill that can help dialysis patients benefit from care coordination like I have. The Chronic Kidney Disease Improvement [...]
Visit the New Kidney Care Matters Site to Find Out What You Can do to Help Dialysis Patients
Dialysis Patient Citizens is excited to announce that the new Kidney Care Matters website is live. This initiative, led by DPC, is focused on promoting better kidney care through care coordination for people with End-Stage Renal Disease. Coordinated care means that all health care providers serving a patient share information with each other in a timely manner about the patient’s health, treatments prescribed, and care delivered. Well-structured care coordination has the potential to provide a more focused, dedicated care management approach that would streamline care, improve health [...]
Patient Advocates Raising Awareness Through Letters to the Editor
Dialysis Patient Citizens takes great pride in the work that our patient ambassadors are doing each and every day in their communities and local dialysis facilities. Through providing additional education and access to resources for fellow dialysis patients, they help to make a difference in the lives of patients and encourage them to be their own advocates. One of the ways our ambassadors are making their voices heard are through letters to the editor, where they write and submit a letter to the editor to his/her local [...]
We Need the BETTER Kidney Care Act
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 a second family, and often pick up on medical problems before they even start doing tests. Even when I suffered a major stroke at the dialysis center, they were there [...]
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 treat their patients. I had the benefit of working with terrific nurses and other providers who met my needs and communicated well between one another, but unfortunately that’s [...]
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 dedicated and involved team of health care providers that were always willing to respond to calls and answer my questions, no matter the time of day. The team [...]
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 restaurant that I had built from the ground up. What followed were years of struggle in order to manage my treatments and ensure that I was receiving the [...]
Sen. Grassley, Leaders in Dialysis Community Pay Tribute to the Late Jack Reynolds, Former DPC President and Founding Board Member
WASHINGTON, D.C., (May 14, 2020) -- Today, Dialysis Patients Citizens (DPC) released statements from U.S. Senator Chuck Grassley (R-IA) and leaders in the dialysis community in honor of the late Jack Reynolds, who served as former DPC president and a founding Board member. U.S. Senator Chuck Grassley (R-IA): “One of the privileges of public service is meeting Iowans like Jack Reynolds. A farm kid who nearly lost his life at age 4, Jack survived against the odds of a 100-gallon barrel of water crushing his abdomen. By age [...]