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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 [...]

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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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“Securing the U.S. Organ Procurement and Transplantation Network Act” Signed into Law

2024-03-29T01:09:16+00:00September 25th, 2023|Categories: Access to Transplant, Advance Patient Choice, Article, News|

On Friday, September 22, 2023, the President signed into law H.R. 2544, the “Securing the U.S. Organ Procurement and Transplantation Network Act,” which allows for the award of multiple grants, contracts, or cooperative agreements to operate the Organ Procurement and Transplantation Network. This bill would open up the number of groups that can help operate the transplant network and help to speed up the process for organ transplants. The bill was introduced by Representatives Bucshon (R-IN) and Kelly (D-IL) and Senators Wyden (D-OR), Grassley (R-IA), Cardin (D-MD), Young (R-IN), and Cassidy (R-LA). We want to thank these Members of Congress for [...]

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Medicare Policy Proposal Jeopardizes Care for Those on Dialysis

2024-03-29T01:09:16+00:00September 8th, 2023|Categories: Access to Transplant, Article, Dialysis Funding, Improve Access to Care, Innovation, Medicare Advantage, Policy Issues, Staffing Shortages, Treatment Options|

CEOs of 3 kidney care organizations explain flaws in CMS' recent reimbursement proposal. In recent years, lawmakers have turned their attention to advancing health equity and creating opportunities for the improvement of historically underserved communities—and rightly so. The urgent need for such improvements is dramatically apparent for people who have end-stage renal disease (ESRD), or kidney failure. While people of all races and ethnicities develop chronic kidney disease (CKD) at similar rates, ESRD disproportionately impacts people of color. Black Americans make up 13% of the US population, but the disparities are evident when one considers that they account for 35% of Americans with [...]

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Lawmakers Come Together to Help Transplant Patients

2024-03-29T01:09:17+00:00May 25th, 2023|Categories: Access to Transplant, Advance Patient Choice, Article|

Earlier this week, the House Energy and Commerce Committee marked up and unanimously passed H.R. 2544 - The Securing the U.S. Organ Procurement and Transplantation Network Act.  This bill was introduced by Rep. Bucshon (R-IN) and Rep. Robin Kelly (D-IL) and Senator Grassley (R-IA) and Chairman Wyden (D-OR) and would improve the efficiency and effectiveness of the organ transplantation process. The United Network for Organ Sharing (UNOS) has held a monopoly over the contract to manage organ distribution since 1984. Recent reports have raised concerns about how this monopoly affects the national Organ Procurement and Transplantation Network (OPTN). This legislation [...]

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House Introduction of the Living Donor Protection Act

2024-03-29T01:09:18+00:00May 1st, 2023|Categories: Access to Transplant, Article, Promote Financial Security, Protect Patient Care|

On April 27th, Congressman Jerrold Nadler (D-NY), Congressman Troy Balderson (R-OH), Congresswoman Lisa Blunt Rochester (D-DE), Congressman Jim Costa (D-CA), Congressman John Curtis (R-UT), Congresswoman Diana DeGette (D-CO), Congresswoman Mariannette Miller-Meeks (R-IA), Congressman Gregory F. Murphy, M.D. (R-NC), and joined by Senator Kirsten Gillibrand (D-NY) and Senator Tom Cotton (R-AR), introduced the Living Donor Protection Act to protect the rights of living organ donors. This legislation would prohibit life, disability, and long-term care insurance companies from denying or limiting coverage and from charging higher premiums for living organ donors; It would amend the Family and Medical Leave Act of 1993 [...]

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DPC State Advocacy – March 2023 Update

2024-03-29T01:09:18+00:00March 27th, 2023|Categories: Access to Transplant, Article, Get Involved, Medigap Coverage, Patient Ambassadors, State Advocacy, Transplant Donor Protection|

It has been a busy and productive legislative session for DPC’s state advocacy efforts. Bills impacting dialysis patients have been introduced in multiple state legislatures and in most cases have moved quickly through the legislative process. Improving access to Medigap coverage is a top priority for DPC, and we are thrilled that several states are working to improve Medigap access. Just last week, DPC celebrated Governor Glenn Youngkin's (R) signing of Virginia bills SB 1409 and HB 1640 into law, guaranteeing access to affordable Medigap coverage for thousands of Virginians under 65 living with end-stage renal disease (ESRD). In Kentucky, Medigap [...]

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HHS Announces Organ Procurement and Transplantation Network Modernization Initiative

2024-03-29T01:09:19+00:00March 22nd, 2023|Categories: Access to Transplant, Article, Treatment Options|

In March, the Health Resources and Services Administration (HRSA), an agency of the U.S. Department of Health and Human Services (HHS), announced a Modernization Initiative to strengthen accountability and transparency in the Organ Procurement and Transplantation Network (OPTN). The initiative includes posting of data dashboards detailing individual transplant center and organ procurement organization performance; improvement of the OPTN IT system; and competitive bidding to manage the OPTN. “Every day, patients and families across the United States rely on the Organ Procurement and Transplantation Network to save the lives of their loved ones who experience organ failure,” said Carole Johnson, HRSA Administrator. [...]

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DPC Responds to Medicare’s Move Toward Medically Necessary Dental Care

2024-03-29T01:09:21+00:00August 26th, 2022|Categories: Access to Transplant, Article, Comment Letter, Dental Coverage, Improve Access to Care, Medicare Advantage|

DPC submitted a comment letter applauding the Center for Medicare and Medicaid Services (CMS) for its announcement that it will cover dental work for kidney transplant candidates when oral health issues are a barrier to transplant surgery. “This proposal is an important recognition and clarification of CMS’s existing authority, which will help to ensure that Medicare beneficiaries can access and afford more of the dental care they need to advance their health,” DPC said. CMS also asked whether there are “types of surgery, or clinical scenarios involving acute or chronic conditions that would have an improved patient outcome if certain dental [...]

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Elevating Dialysis Patient Voices Bolsters State Advocacy Victories

2024-03-29T01:10:08+00:00April 27th, 2022|Categories: Access to Transplant, Article, Medicaid, Medicare Advantage, Medigap Coverage|

As many 2022 state legislative sessions are winding down or have recently wrapped-up, it is a good time to update DPC members on state legislation important to dialysis patients. The participation of our Patient Ambassadors in DPC’s advocacy efforts has been really beneficial in educating legislators to help them make more-informed decisions on legislation that impacts End Stage Renal Disease (ESRD) patients. Improving access to affordable Medicare Supplemental Insurance (a.k.a., Medigap) plans is a top priority for DPC, and legislation was introduced in multiple states: Arizona, Kentucky, Louisiana, Nebraska, Maryland, New Jersey, Rhode Island, Vermont, and Wisconsin. Arizona, Kentucky, Nebraska, and [...]

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