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News2020-03-21T20:39:15+00:00

Dialysis Patient Citizens News

Dialysis Patient Citizens Announces First-in-the-Nation Kidney Disease Training Curriculum for Community Health Workers

July 11th, 2024|

Registration is now open for community health workers to sign up for the CHW Chronic Kidney Disease Training through the Illinois Public Health Association WASHINGTON, D.C. (July 11, 2024) - Today, Dialysis Patient Citizens (DPC), the nation’s largest non-profit advocacy organization for dialysis patients and their families, is announcing a first-in-the-nation kidney disease training curriculum for community health workers. The training will help community health workers educate their communities about kidney disease and help people at risk for kidney failure learn how to take care of their [...]

Restore the Protections

July 2nd, 2024|

Editor, I’ve been on dialysis for more than 20 years, and I, like many other patients, struggle to afford the treatments that keep me alive. America’s health insurance system is supposed to give all patients equal support, but for dialysis patients, it doesn’t feel that way. The Supreme Court ruled that private insurers could automatically transition dialysis patients to Medicare instead of allowing them to stay on their private insurance for 30 months. When you first start dialysis, you’re quite sick and the experience can be traumatic, [...]

Letter to the Editor

June 28th, 2024|

My daughter Dianne passed away at the age of 45 due to complications related to kidney failure, or End Stage Renal Disease (ESRD). Anyone who has lost a child knows the indescribable loss I experienced. However, few people understand the financial burdens ESRD patients face in addition to managing their health. I am extremely grateful that Medicare, combined with the benefits provided by the state of Pennsylvania, covered the bulk of Dianne’s healthcare expenses. Other patients, though, rely on employer-provided private insurance to cover their health care [...]

Letter: Supreme Court ruling harms dialysis patients

June 27th, 2024|

Dear Editor: Kidney failure, known as end stage renal disease (ESRD), brought many difficulties to my life. I had high blood pressure and diabetes, which ultimately caused my kidneys to fail. My kidney disease went undiagnosed for a long time, and when I was diagnosed, my husband, daughter and grandson had all recently passed away. I was already going through so much. My diagnosis made things even harder. Despite physical and financial problems, I’ve managed to persevere on dialysis resiliently. Financially, I’ve relied on Medicare and Medicaid, [...]

Letter to the editor: Let dialysis patients keep their insurance

June 27th, 2024|

Living with kidney failure is hard, but it may become even harder. The Supreme Court issued a ruling that may give private insurers the power to weaken coverage for dialysis in the traditionally covered first 30 months of dialysis. This could push patients off their insurance too quickly and leave them with ridiculously high bills. I started dialysis treatment when I was 16 years old. Appointments, treatments and medications clouded my life like an incoming storm. Yet, I was lucky enough to not worry about bills since [...]

Congress must help new dialysis patients

June 27th, 2024|

Kidney failure changes patients’ lives. I see patients battle kidney failure every day as a social worker at a dialysis clinic where they receive life-saving treatment. Unfortunately, physical hardships are only the beginning. As a social worker, I help dialysis patients deal with insurance companies. It is a challenging task: dialysis is costly, and insurance companies do their best to avoid paying. Nevertheless, private insurance gives patients the best opportunity to receive kidney transplants. Allowing kidney patients to keep their private insurance gives them the best shot. [...]

I am a veteran with kidney disease. Dialysis patients need support from Congress

June 26th, 2024|

At 22, while serving in the Army National Guard, I discovered I had a hereditary immune disease called IgA nephropathy affecting my kidneys. When I turned 50, my kidneys finally began to fail. I then entered end-stage renal disease (ESRD) and began dialysis, which removes waste from the blood when the kidneys can't. Dialysis has been a part of my life ever since. My father and grandfather both suffered from ESRD. Losing my father to the disease last November was tragic, especially as I battled the disease [...]

Action Alert: H.R. 5027/S. 4469 – The Chronic Kidney Disease Improvement in Research and Treatment Act

June 25th, 2024|

The Chronic Kidney Disease Improvement in Research and Treatment Act (H.R. 5027/S. 4469) sets the stage for the future of kidney care. Representatives Carol Miller (R-WV) and Terri Sewell (D-AL)  re-introduced the bill in the House of Representatives on July 28, 2023 and Senators Ben Cardin (D-MD) and Marsha Blackburn (R-TN) re-introduced the bill in the Senate on June 5, 2024. If passed, this legislation would improve efforts to prevent and better understand chronic kidney disease (CKD) by ensuring appropriate reimbursement for quality care and improve patient access [...]

Letter to the editor: Restore protections for dialysis patients

June 18th, 2024|

My father’s battle with end-stage renal disease changed our family’s life. I cared for him as he endured dialysis for two years, showing immense courage. He received two transplants, including one of my kidneys, but sadly, he passed away. In his memory, I now advocate for kidney patients and am pursuing a master’s degree in physiology at Georgetown University. Dialysis patients like my father often face financial hardships. As a business owner, he paid up to $1,400 monthly for private insurance to receive better treatment options than [...]

Help dialysis patients

June 13th, 2024|

Dear Editor: Kidney failure runs in my family, so I knew that my chances of experiencing kidney failure were high. I received the heartbreaking and scary diagnosis in 2004 and soon after I began dialysis, the sole treatment outside of a kidney transplant. I received a kidney transplant after an exhausting 13 years on dialysis. When I was first diagnosed, I relied on employer-provided private insurance to cover my healthcare expenses. After two years I transitioned to Medicare, and I currently rely on Medicare and private insurance. [...]

DPC Asks Medicare Officials to Reverse Pruritis Drug Fiasco

June 12th, 2024|

In a letter to the Center for Medicare and Medicaid Services (CMS), Dialysis Patient Citizens (DPC) asked for a “do-over” in the rollout of Korsuva, a drug that treats ESRD-related pruritis. Medicare makes an add-on payment for new drugs that expires after two years, leaving uncertainty about how providers can offer such drugs to patients when that period ends. This uncertainty discouraged nephrologists from prescribing the medication. Empirical research has found a prevalence of moderate to severe pruritis among dialysis patients of 33 percent, but Korsuva has been [...]

DPC’s Letter to Hon. Jonathan Blum, Principal Deputy Administrator for CMS, on New Drugs in the ESRD PPS

June 11th, 2024|

June 11, 2024 The Honorable Jonathan Blum Principal Deputy Administrator Centers for Medicare & Medicaid Services 200 Independence Avenue, SW Washington, DC  20515 Re:  New drugs in the ESRD PPS Dear Principal Deputy Administrator Blum: In our comments on the 2024 ESRD payment rule, we expressed our concerns about how patients experienced the rollout of Korsuva, the drug that treats ESRD-related pruritis. We noted that the prescribing behavior of nephrologists has amounted to, in effect, a de facto embargo of the medication. Empirical research has found a [...]

Rep. Pallone: Help NJ’s dialysis patients

June 9th, 2024|

Being diagnosed with End Stage Renal Disease, ESRD, or kidney failure, changed my life. Suddenly, I needed intravenous treatment three times per week to survive. Like so many ESRD patients, I had to uproot my life to receive treatment. I kept my job during my dialysis journey, working six hours a day and receiving treatment afterwards. I was perpetually exhausted — but I got through it. Adding to the challenges ESRD patients like me face, a recent Supreme Court decision allows private insurers to push high-cost consumers [...]

Letter: Medicare, Medicaid not keeping up with inflation, hurting patient care

June 5th, 2024|

Dear Editor, I was born with a rare genetic disorder that caused my kidneys and eyes to be underdeveloped. I have battled chronic kidney disease at all levels throughout my entire life. At age 25, I went into complete kidney failure (AKA End Stage Renal Disease) and began dialysis, which is a continuous and grueling treatment which does the work my kidneys can’t. The financial and emotional difficulties I’ve dealt with have been very challenging. Unfortunately, I must also worry about medical workforce shortages caused by a [...]

Dialysis needs

June 2nd, 2024|

After I received a kidney transplant, I wrote a letter to the family of my donor expressing my immense gratitude. My journey with end stage renal disease took a toll, and the transplant marked a new beginning. I moved to Kansas City, began working full time and started a family. I received dialysis — a treatment three times per week to replace my kidney function — for almost seven years before receiving a transplant. I am extremely thankful for dialysis, but it was exhausting. I qualified for [...]

Kidney patients need protections restored

May 21st, 2024|

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 months after an individual starts treatment, providing patients with the opportunity to focus on their health rather than worrying about their finances. However, a recent U.S. Supreme Court [...]

DPC’s 2024 Advocacy Day

May 20th, 2024|

Earlier this month, DPC hosted our annual Advocacy Day in Washington, D.C. where we bring together patients, family members, and care givers to meet with their Members of Congress to elevate the patient story for dialysis patients. This year we had 65 advocates attend, representing 25 states, who had almost 80 Congressional meetings. Our patients spoke to Congressional offices asking them to support H.R. 6860 – The Restore Protections for Dialysis Patients Act and H.R. 5027 – The Chronic Kidney Disease Improvement in Research and Treatment Act. [...]

Buchanan Can Help Dialysis Patients

May 16th, 2024|

I have kidney failure, and I need dialysis to survive. Dialysis is a treatment which removes excess water and toxins from my blood because my kidneys do not function naturally anymore. It has been a challenge, and my body is still getting used to the frequent treatment which wears down my body. Dialysis patients already worry enough about their physical condition. They should not have to worry about finances too. Sadly, they do. I was lucky to be retired and have sufficient coverage when I began dialysis, [...]

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