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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 [...]

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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 [...]

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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 [...]

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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 [...]

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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 [...]

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DPC Celebrates 20th Anniversary

2024-04-24T16:16:22+00:00April 1st, 2024|Categories: About DPC, Advance Patient Choice, Article, Get Involved, Improve Access to Care, Increase Quality of Care, Patient Ambassadors, Promote Financial Security, Protect Patient Care|

Since our founding 20 years ago, Dialysis Patient Citizens (DPC) has had the privilege of working with amazing advocates to help elevate the patient voice with policy makers to improve their quality of life. At our upcoming Advocacy Day Conference, May 5 – 7, 2024, we are excited to: honor the incredible work of our patient advocates; thank key Congressional Champions; and recognize some of our kidney community allies. Advocates from across the country will also take their stories to Capitol Hill to advocate for additional patient protections. To all of our patient advocates, family members, care partners, and kidney community [...]

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DPC Recognizes Patients and Dialysis Staff as Part of its 20th Anniversary Celebration

2024-03-29T01:09:12+00:00February 14th, 2024|Categories: Advance Patient Choice, Article, Get Involved, Improve Access to Care, Increase Quality of Care, Patient Ambassadors, Promote Financial Security|

In January, DPC kicked off a year-long 20th Anniversary celebration by recognizing one of our outstanding patient advocates, and thanked dialysis facility staff who go above “the extra mile” to provide exceptional care, even in the face of recent staffing shortages. Gene Blankenship was the recipient of DPC’s inaugural Patient Advocacy Champion Award for his work in advocating for dialysis patients with his elected officials. DPC also awarded its inaugural Dialysis Dynamo awards to Amanda Byrd, AA/CCHT, Alicia Caldwell, RN, CDN, Sean Scearce, PA, and Marcy Stites, RN, for their hard work providing 5-star quality care for an underserved, rural community [...]

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2024 Advocacy Day – 24 Hours Left to Apply!

2024-03-29T01:09:12+00:00January 25th, 2024|Categories: Advance Patient Choice, Article, Get Involved, Improve Access to Care, Increase Quality of Care, Patient Ambassadors, Policy Issues, Promote Financial Security, Protect Patient Care, Take Action|

Dialysis Patient Citizens (DPC) will host our 20th Anniversary Celebration and Annual Congressional Advocacy Day May 6-7, 2024. Participants will be selected based on the quality of their applications, legislative priorities, and previous involvement in DPC's advocacy efforts. We will hold a training session ahead of our congressional meeting for those participating to explain the process and review our current legislative “asks.” The application period is open until January 26, 2024. We just ask that you tell us a little about yourself and why you think you would be a good candidate for this incredible opportunity. We will make a decision [...]

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Happy Thanksgiving from DPC Board, Staff, and Volunteers!

2024-03-29T01:09:15+00:00November 21st, 2023|Categories: Access to Transplant, Article, Medigap Coverage, News, Private Insurance Coverage|

DPC would like to wish our many patient advocates, family, friends, and healthcare partners a happy Thanksgiving. We are grateful for all of these hard-working individuals and for their dedication to the kidney community, as well as their effort to help elevate the patient voice. This year, our patient advocates helped to secure passage of critical legislation at the federal level to help modernize the transplant system. We also worked hard to educate hundreds of policy makers about the importance of protecting dialysis patient access to private insurance coverage, as well as the need to provide access to Medicare secondary [...]

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DPC Letter to CMMI on ESRD Treatment Choices Demonstration Issues

2024-03-29T01:09:16+00:00October 10th, 2023|Categories: Comment Letter, Improve Access to Care, Treatment Options|

October 10, 2023 Dr. Elizabeth Fowler, Deputy Administrator Centers for Medicare & Medicaid Services 7500 Security Boulevard Baltimore, MD  21244 Re: ESRD Treatment Choices Demonstration Issues Dear Dr. Fowler: Last year, published research looking at CMMI’s ESRD Treatment Choices Model (ETC) indicated that the program is not having the effect that was hypothesized. Now, CMMI’s own evaluation contractor has echoed those findings. We urge CMMI to pause and reassess whether ETC was the best available policy intervention to promote home dialysis and transplantation, and consider alternatives. ETC imposes a bonus-and-penalty payment adjustment in randomly selected intervention regions to incentivize kidney providers [...]

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