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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 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 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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Medicare Must Increase Access to Improvements in Dialysis Care

2024-03-29T01:09:16+00:00October 6th, 2023|Categories: Advance Patient Choice, Innovation, Patient Stories in the News, Private Insurance Coverage, Treatment Options|

For people who live with a chronic illness, one of the most powerful words in the English language is hope. As a more than 20-year dialysis patient with end-stage renal disease, otherwise known as kidney failure, hope is a driving force in my life. My condition may never be cured, but new treatments are under development that could ease my symptoms. Every day, I hold out hope that a new, revolutionary treatment is around the corner that could help me and thousands like me live a more comfortable life. Unfortunately, the Centers for Medicare and Medicaid Services is becoming a [...]

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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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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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National Kidney Month Reminds Us of the Possibilities of Life on Dialysis

2024-03-29T01:09:19+00:00February 21st, 2023|Categories: Article, Care Coordination, Medigap Coverage, News, Patient Ambassadors, Patient's Voice, Policy Issues, Spotlight, Treatment Options|

The coming March marks the start of National Kidney Month, a time to promote kidney health, raise awareness of the obstacles facing patients, and advocate for policies that help them as they navigate life with kidney disease. However, National Kidney Month also means so much more. It is an opportunity to spread awareness of the fact that being on dialysis doesn’t mean having to put your life on hold. You can still pursue a career and do the things you love most, whether that’s traveling, camping, or spending time with family and friends. At Dialysis Patient Citizens, we are extremely [...]

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DPC Continues Outreach to Protect Patients’ Rights

2024-03-29T01:09:21+00:00September 6th, 2022|Categories: Advance Patient Choice, Article, Private Insurance Coverage, Protect Patient Care, Take Action, Treatment Options|

DPC Members and Patient Ambassadors continue advocacy on H.R. 8594/S. 4750 - The Restore Protections for Dialysis Patients Act, which would codify into law the right for dialysis patients to stay on their private insurance for up to 30 months, if they should so choose. This bill not only preserves patient choice but also encourages insurers to detect and treat kidney disease early and, most importantly, protects kidney disease patients from discrimination. This legislation reinstates the importance of allowing kidney patients to decide which health insurance will best serve them. For more information, to watch patient testimonials, or to take action, [...]

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Medicare Kicks Off New Kidney Care Demonstration Project

2024-03-29T01:10:10+00:00February 1st, 2022|Categories: Access to Transplant, Article, Increase Quality of Care, Medicare Advantage, News, Promote Financial Security, Treatment Options|

The Center for Medicare and Medicaid Innovation has announced 85 sites for its Kidney Care Choices (KCC) Demonstration Project, which started January 1, 2022. The program, initially announced by President Donald Trump in July 2019, is intended to “help health care providers reduce the cost and improve the quality of care for patients with late-stage chronic kidney disease and ESRD… and to delay the need for dialysis and encourage kidney transplantation.” KCC consists of two separate programs. In Kidney Care First (KCF), participating nephrology practices receive payments on a per-patient basis for managing the care of patients with late-stage chronic kidney [...]

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