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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 [...]

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 [...]

DPC Asks Medicare Officials to Reverse Pruritis Drug Fiasco

2024-06-27T14:45:47+00:00June 12th, 2024|Categories: Advance Patient Choice, Article, Increase Quality of Care, Innovation, Protect Patient Care, Treatment Options|

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 dispensed to fewer than one percent of patients. In the letter, several DPC [...]

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

2024-06-27T14:42:14+00:00June 11th, 2024|Categories: Advance Patient Choice, Comment Letter, Increase Quality of Care, Innovation, Protect Patient Care, Treatment Options|

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 prevalence of moderate to severe pruritis among dialysis patients of 33 percent, but [...]

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

2024-06-06T16:32:28+00:00June 5th, 2024|Categories: Dialysis Funding, Medicare Advantage, Patient Stories in the News, Staffing Shortages|

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 lack of federal funding. Over the past few years, the Centers for Medicare [...]

DPC’s 2024 Advocacy Day

2024-05-23T14:34:34+00:00May 20th, 2024|Categories: Advance Patient Choice, Article, Get Involved, Improve Access to Care, Increase Quality of Care, Medigap Coverage, News, Patient Ambassadors, Private Insurance Coverage, Promote Financial Security, Protect Patient Care|

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. These two bills would allow dialysis patients access to private insurance and Medigap [...]

Letter: Medicare failed us

2024-05-10T15:08:12+00:00May 6th, 2024|Categories: Dialysis Funding, Medicare Advantage, Patient Stories in the News, Staffing Shortages|

As a program coordinator for the Kidney Foundation of Central Pennsylvania, I have made it my life’s mission to help kidney patients manage their condition. I see or hear stories of the inadequate standards of care currently practiced at clinics, hospitals and specialist practices in this country. Many patients I talk to are frustrated and feel like they have been forgotten. We must do better. The problem lies in the lack of health care workers. A severe lack of funding makes it more difficult to hire and keep doctors, nurses and technicians. Much of the problem is demographic. With fewer [...]

Dialysis Patient Citizens Issues Statement on Passing of Congressman Donald Payne Jr.

2024-04-24T20:19:10+00:00April 24th, 2024|Categories: Improve Access to Care, Increase Quality of Care, News, Policy Issues, Press Release, Promote Financial Security, Protect Patient Care|

Rep. Payne Received Dialysis Treatment and Supported DPC Advocacy Efforts WASHINGTON, D.C. (April 24, 2024) - Today, Dialysis Patient Citizens (DPC) Board President Andrew Conkling issued the following statement on the passing of Rep. Donald Payne Jr. (D-NJ). Rep. Payne received dialysis treatment, advocated for better care and insurance coverage for dialysis patients, and spoke at a DPC advocacy event in Washington, DC. “We are deeply saddened to learn of the passing of Congressman Payne, who was a true friend to Dialysis Patient Citizens and a tireless advocate for dialysis patients across the country,” said DPC Board President Andrew Conkling. “Despite [...]

DPC Seeks Information on Patients’ Experience With Itching

2024-04-24T16:12:21+00:00April 24th, 2024|Categories: Advance Patient Choice, Article, Increase Quality of Care, Innovation, Medicare Advantage, Treatment Options|

A couple of years ago, a new drug was approved to treat ESRD-related pruritis. Medicare approved an additional payment for the drug Korsuva for a period of 2 years. But, because of the short expiration date, very few nephrologists prescribed the medication, so even fewer dialysis facilities dispensed the drug. As a result, Korsuva never took hold to become the standard of care for pruritis. We’d like to know (1) Have experienced pruritis? (2) If so, did your clinicians tell you about Korsuva? We would like to convey patients’ experiences as we ask for Medicare to revisit coverage: what it’s like [...]

Poor care? Blame Medicare payments

2024-04-16T15:09:10+00:00April 14th, 2024|Categories: Dialysis Funding, Medicare Advantage, Patient Stories in the News, Staffing Shortages|

My husband Raymond and I met on a blind date. Three months later, his kidney unexpectedly failed, and I have walked alongside him on his patient journey ever since. My husband’s life depends on dialysis, the treatment that does what his kidney can’t do. Unfortunately, we confronted problems with our dialysis center that reflect larger trends caused by insufficient reimbursements from the Center for Medicare and Medicaid Services (CMS). Our nation is confronting a demographic crisis, with fewer working-aged people and more patients, which is why we are seeing worsening shortages of health care workers. CMS’ reimbursements have been far [...]

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