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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 [...]

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 [...]

Rep. Pallone: Help NJ’s dialysis patients

2024-06-17T14:06:39+00:00June 9th, 2024|Categories: Patient Stories in the News, Private Insurance Coverage|

Being diagnosed with End Stage Renal Disease, ESRD, or kidney failure, changed my life. Suddenly, I needed intravenous treatment three times per week to survive. Like so many ESRD patients, I had to uproot my life to receive treatment. I kept my job during my dialysis journey, working six hours a day and receiving treatment afterwards. I was perpetually exhausted — but I got through it. Adding to the challenges ESRD patients like me face, a recent Supreme Court decision allows private insurers to push high-cost consumers like ESRD patients off of their plans prematurely, even if they are employed. [...]

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 [...]

Dialysis needs

2024-06-05T17:59:41+00:00June 2nd, 2024|Categories: Patient Stories in the News, Private Insurance Coverage|

After I received a kidney transplant, I wrote a letter to the family of my donor expressing my immense gratitude. My journey with end stage renal disease took a toll, and the transplant marked a new beginning. I moved to Kansas City, began working full time and started a family. I received dialysis — a treatment three times per week to replace my kidney function — for almost seven years before receiving a transplant. I am extremely thankful for dialysis, but it was exhausting. I qualified for Medicare and Medicaid for the entirety of my dialysis journey, but others rely [...]

Kidney patients need protections restored

2024-05-21T16:30:13+00:00May 21st, 2024|Categories: Patient Stories in the News, Private Insurance Coverage|

I was 14 when my father was diagnosed with End Stage Renal Disease, or kidney failure. I witnessed the suffering, anxiety, and helplessness the disease brought upon my family. I also witnessed the financial burden of medical bills, which became unaffordable once my father was forced off of his marketplace insurance. Traditionally, private insurance companies cover dialysis for 30 months after an individual starts treatment, providing patients with the opportunity to focus on their health rather than worrying about their finances. However, a recent U.S. Supreme Court ruling weakens these protections, which could lead to more insurers kicking kidney failure [...]

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 [...]

Buchanan Can Help Dialysis Patients

2024-08-20T18:54:19+00:00May 16th, 2024|Categories: Patient Stories in the News, Private Insurance Coverage, Spotlight|

I have kidney failure, and I need dialysis to survive. Dialysis is a treatment which removes excess water and toxins from my blood because my kidneys do not function naturally anymore. It has been a challenge, and my body is still getting used to the frequent treatment which wears down my body. Dialysis patients already worry enough about their physical condition. They should not have to worry about finances too. Sadly, they do. I was lucky to be retired and have sufficient coverage when I began dialysis, but I know people who struggle to pay. Some have private insurance, but [...]

Help dialysis patients

2024-06-27T14:47:14+00:00May 7th, 2024|Categories: Patient Stories in the News, Private Insurance Coverage, Spotlight|

End Stage Renal Disease (ESRD), commonly called kidney failure, changed my life. I was first diagnosed with kidney disease in 2014, and my kidneys totally failed in 2020 after a battle with covid-19. I relied on dialysis, the treatment which replaced my kidneys' blood-filtering function, from 2020 until August of 2023 when I received a kidney transplant. As an ESRD patient advocate lucky enough to have received a transplant, I feel obligated to call on Congressman French Hill to help future dialysis patients afford lifesaving dialysis care. He can do so by supporting the Restore Protections for Dialysis Patients Act. [...]

Support the Restore Protections for Dialysis Patients Act

2024-05-09T19:56:55+00:00May 6th, 2024|Categories: Patient Stories in the News, Private Insurance Coverage|

Kidney failure, or end-stage renal disease (ESRD), affects Americans of all ages. I was 14 years old when I received my diagnosis. I’ve been on dialysis for many years and have received two transplants in the process, but perhaps more stressful than dialysis has been paying for all my healthcare expenses. I’ve relied on private insurance for much of my ESRD journey. After my second transplant, I had private insurance that proved essential once my transplant failed and I needed to stay in the hospital. I eventually transitioned to Medicare, but did not qualify for Medicaid, and Medicare only pays [...]

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