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DPC Submits Letter to HRSA on Out-of-Sequence Organ Donation

2025-05-22T17:13:52+00:00May 22nd, 2025|Categories: Access to Transplant, Advance Patient Choice, Article, Protect Patient Care|

On May 21, 2025, DPC submitted a letter to Thomas J. Engels, Administrator at the Health Resources and Services Administration (HRSA), expressing concern about the growth in out-of-sequence organ transplants reported in a recent New York Times article. The article outlines a recent shift in the transplant system, where someone’s ranking on the transplant list may be ignored and instead the organ is given to a patient further down the list, usually due to easier coordination for the transplant. As a patient-led organization whose board is comprised of dialysis and kidney transplant patients, DPC is alarmed at the reported rate [...]

DPC’s Letter to Thomas J. Engels, Administrator at Health Resources and Services Administration, on Out-of-Sequence Organ Allocations

2025-05-21T20:16:46+00:00May 21st, 2025|Categories: Advance Patient Choice, Article, Improve Access to Care, Increase Quality of Care, Protect Patient Care|

May 21, 2025 Thomas J. Engels, Administrator Health Resources and Services Administration 5600 Fishers Lane Rockville, MD 20857 Re:      Out-of-Sequence Organ Allocations Dear Administrator Engels: Dialysis Patient Citizens (DPC) writes to express our concerns about the growth in out-of-sequence organ transplants reported in a recent New York Times article. DPC's membership, currently about 35,000, is restricted to kidney disease patients and their family members. DPC is a patient-led organization.  Our by-laws require that the President, Vice President and at least 51% of the Board be current dialysis patients.  The non-dialysis patients serving on our Board are former dialysis patients with [...]

Building Momentum: DPC’s Growing Patient Ambassador Network

2025-02-27T15:04:29+00:00February 10th, 2025|Categories: Advance Patient Choice, Article, Improve Access to Care, Increase Quality of Care, Medigap Coverage, Patient Ambassadors, Policy Issues, Private Insurance Coverage, Promote Financial Security, Protect Patient Care, State Advocacy|

By Yolonda Brisbane, DPC Grassroots Manager Since I began my role as Grassroots Manager for Dialysis Patient Citizens (DPC) in April 2022, I’ve had the privilege of witnessing the growth of something truly special—the Patient Ambassador Program. This network of DPC members from across the country is dedicated to amplifying their voices and making a real difference. Turning personal health challenges and difficult experiences into action, they advocate for better care for the kidney patient community. In addition to their ongoing advocacy efforts, DPC Patient Ambassadors take part in Advocacy Day in Washington, DC, meeting with lawmakers to push for positive [...]

California Resources

2025-01-23T17:55:22+00:00January 9th, 2025|Categories: Advance Patient Choice, Article, Improve Access to Care, Increase Quality of Care, Policy Issues, Promote Financial Security, State Advocacy|

As the wildfires continue to profoundly affect communities in the Los Angeles area, Dialysis Patient Citizens extends its heartfelt support to all who are impacted by this devastating crisis. Thousands of structures have been affected, over 200,000 residents have been displaced, and to date, at least 27 people have lost their lives. Government officials, including Governor Newsom, have issued emergency declarations as the fires intensified, allowing for rapid deployment of resources to protect lives, property, and critical infrastructure. While some of you may not live in the immediate area of the wildfires, we understand that many of you may work, travel, [...]

Medicare Drug Plans Are Getting Better Next Year. Some Will Also Cost More.

2024-10-24T12:55:43+00:00October 21st, 2024|Categories: Article, Immunosuppressive Drug Coverage, Medicare Advantage, News, Promote Financial Security|

By Susan Jaffe October 21, 2024 When Pam McClure learned she’d save nearly $4,000 on her prescription drugs next year, she said, “it sounded too good to be true.” She and her husband are both retired and live on a “very strict” budget in central North Dakota. By the end of this year, she will have spent almost $6,000 for her medications, including a drug to control her diabetes. McClure, 70, is one of about 3.2 million people with Medicare prescription drug insurance whose out-of-pocket medication costs will be capped at $2,000 in 2025 because of the Biden administration’s 2022 Inflation Reduction Act, according [...]

Private Insurance for Dialysis Care Introduced in the Senate

2024-09-26T14:10:02+00:00September 25th, 2024|Categories: Advance Patient Choice, Article, Improve Access to Care, Private Insurance Coverage, Promote Financial Security, Protect Patient Care|

Senators Bill Cassidy (R-LA), Cory Booker (D-NJ) and Martin Heinrich (D-NM) recently introduced The Restore Protections for Dialysis Patients Act (S. 5018), which is the Senate companion to H.R. 6860 introduced earlier this year. If you are a dialysis patient, you may be eligible for Medicare, but you also have the right to keep your private employer-sponsored health insurance for up to 30 months after being diagnosed with kidney failure. However, a recent U.S. Supreme Court decision could limit your access to private coverage by allowing health plans to cut dialysis benefits from their networks and impose stricter rules. Along [...]

First class of Community Health Workers complete Chronic Kidney Disease training program

2024-09-26T14:10:05+00:00September 2nd, 2024|Categories: Advance Patient Choice, Article, Improve Access to Care, Increase Quality of Care, Promote Financial Security|

DPC is pleased to announce that the first graduating class of community health workers (CHW) from Illinois have completed the Chronic Kidney Disease CHW training curriculum. DPC has led this effort in Illinois over the last two years, developing the first-in-the-nation kidney disease training curriculum for CHWs. The training will help CHWs educate their communities about kidney disease and help people at risk for kidney failure learn how to take care of their health, slow disease progression and reduce the number of people who start dialysis in the hospital emergency room as they are not aware that their kidneys are [...]

State Advocacy Update – Council of State Governments Meetings

2024-07-25T17:45:31+00:00July 25th, 2024|Categories: Advance Patient Choice, Article, Improve Access to Care, Increase Quality of Care, Medigap Coverage, News, Policy Issues, Promote Financial Security, Protect Patient Care, State Advocacy|

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 tremendous opportunity to elevate our advocacy work on behalf of dialysis patients with [...]

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 [...]

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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