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

Dialysis Patient Citizens News

Americans should never be punished for having a debilitating illness

July 27th, 2024|

Americans should never be punished for having a debilitating illness. Unfortunately, that’s what happens to people like me with illnesses such as End Stage Renal Disease (ESRD), otherwise known as kidney failure. ESRD changed my life. Paying for ESRD treatment, whether it was dialysis (the treatment which works in place of kidneys) or transplant, both of which I experienced, proved to be extremely difficult. I had to rely on Cobra, Medicare, and Medicaid, and I struggled to pay for life-saving treatment. For other ESRD patients, they face [...]

State Advocacy Update – Council of State Governments Meetings

July 25th, 2024|

DPC’s two State Advocacy Directors have been busy advocating for dialysis patients this summer. Pamela Zielske, DPC’s Western Region Advocacy Director, attended the 77th Council of State Governments Annual Meeting in Portland, Oregon earlier this month. The event provided an outstanding opportunity to cultivate relationships with state legislators and attend policy sessions and legislative learning labs, including one hosted by Fresenius Medical Care on Improving Equity and Health Outcomes in Kidney Health Care. With legislators in attendance from 13 western states, the CSG West Meeting was a [...]

Restore Protections for Dialysis Patients Act needs NJ delegation’s support

July 22nd, 2024|

For most patients with End Stage Renal Disease (ESRD), or kidney failure, their diagnosis comes as a shock. One day, I was suddenly rushed to the ER and received the shocking diagnosis. I suddenly had to begin dialysis, the only treatment for ESRD outside of a kidney transplant. My life changed at that moment. I would now have to do almost daily dialysis treatments that can take several hours each time. I didn’t know how I was going to keep working and make ends meet. On top [...]

Federal bill critical for dialysis patients

July 19th, 2024|

COVID-19 changed the lives of all Americans. For me, a COVID-19 infection led to kidney failure. When the doctor diagnosed me with End Stage Renal Disease (ESRD), I could not believe it. Suddenly, I had to begin dialysis, the arduous and frequent treatment which replaces my kidneys. Dialysis allows me to live. Unfortunately, the health care expenses for dialysis patients can become overwhelming, especially since many of us have other health conditions. Fortunately, I began treatment on private insurance with a very low deductible, which kept me [...]

Supreme Court ruling puts decades-long patient protections at risk

July 19th, 2024|

To the Editor: Chances are you know someone with End Stage Renal Disease (ESRD), or kidney failure. ESRD affects people of all ages and backgrounds. My kidneys failed despite the fact that I had a healthy lifestyle, and it was a hard pill to swallow. The only two treatments available for kidney failure are transplants — which are scarce — and dialysis, the treatment that removes extra fluid and waste products from your blood when your kidneys can’t. I received dialysis treatment for seven years before receiving [...]

Rep. Houchin needs to support act to help dialysis patients in Indiana

July 19th, 2024|

Dialysis patients and families of the 9th Congressional District need your help. In 2022, the Supreme Court decided that group health plans do not violate the Medicare Secondary Payer Plan (MSP) law by changing the benefits for dialysis patients, which could force them into government coverage. This decision will place dialysis patients and their families in severe financial hardship, as Medicare only covers 80% of our health care expenses. Only recently did my state look at increasing patient access to private plans to help us cover the [...]

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 [...]

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