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

2024-07-11T16:38:32+00:00July 11th, 2024|Categories: Advance Patient Choice, Improve Access to Care, Increase Quality of Care, Press Release|

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 health and slow the progression of the disease. “Community health workers are an [...]

Restore the Protections

2024-07-03T16:24:14+00:00July 2nd, 2024|Categories: Patient Stories in the News, Private Insurance Coverage|

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, so it’s a terrible time to not only switch health plans but to [...]

Letter to the Editor

2024-07-03T16:20:24+00:00June 28th, 2024|Categories: Patient Stories in the News, Private Insurance Coverage|

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 costs, especially in the beginning months of care before switching to Medicare.  Yet, [...]

Letter: Supreme Court ruling harms dialysis patients

2024-06-28T19:56:37+00:00June 27th, 2024|Categories: Patient Stories in the News, Private Insurance Coverage|

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, but I still have to pay out of pocket for many medications. It’s [...]

Letter to the editor: Let dialysis patients keep their insurance

2024-06-27T18:23:03+00:00June 27th, 2024|Categories: Patient Stories in the News, Private Insurance Coverage|

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 I had my mother’s private insurance. Without it, we would have been left [...]

Congress must help new dialysis patients

2024-07-01T14:19:11+00:00June 27th, 2024|Categories: Patient Stories in the News, Private Insurance Coverage|

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. However, a recent Supreme Court decision allows private insurance companies to push patients [...]

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

2024-09-25T18:23:04+00:00June 26th, 2024|Categories: Patient Stories in the News, Private Insurance Coverage, Spotlight|

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 myself, but it inspired me to become an advocate for policies protecting kidney [...]

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

2024-06-27T14:07:34+00:00June 25th, 2024|Categories: Article, Improve Access to Care, Increase Quality of Care, Medigap Coverage, Promote Financial Security, Quality Incentive Program, Take Action|

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 to the best drugs, technology and innovations along the kidney care continuum. One [...]

Letter to the editor: Restore protections for dialysis patients

2024-06-20T14:11:17+00:00June 18th, 2024|Categories: Patient Stories in the News, Private Insurance Coverage|

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 state insurance could provide. Previously, end-stage renal disease patients could keep their private [...]

Help dialysis patients

2024-10-24T12:59:25+00:00June 13th, 2024|Categories: Patient Stories in the News, Private Insurance Coverage, Spotlight|

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. Although I consistently pay high premiums out-of-pocket, private insurance has allowed me to [...]

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