Dialysis Patient Citizens News
Letter: dialysis funding
When your kidneys fail, dialysis is your hope for a better future. But affording dialysis can be a tricky ordeal because Medicare, which all dialysis patients are required to have as their primary provider after 30 months, only covers 80% of the treatment costs. For me, paying the other 20% was hard because, as someone under the age of 65, I had to pay high premiums for my supplemental plan. Unfortunately, paying for the coverage that saves patients' lives is about to become even more difficult. The [...]
Give dialysis patients time to plan
Kidney failure changed my life. I’ve learned a thing or two after spending 18 years on dialysis, receiving a kidney transplant, and spending years as an advocate for my fellow patients. In the initial 30 months of dialysis, dialysis patients have traditionally had the option to keep their private insurance in order to plan for their inevitable transition to Medicare. Planning proves especially important for patients who may no longer receive employer-provided insurance, since dialysis often prevents people from working. However, a recent Supreme Court decision may [...]
Letter: Congress must help dialysis patients
Since coming to Congress last year, Rep. Marie Gluesenkamp Perez has worked across party lines to help our community. I hope she’ll do so again by working to ensure that Washington’s kidney disease patients, of which I am one, can have access to proper insurance. After a Supreme Court ruling, private insurance companies may be able to weaken what they cover for dialysis patients. Previously, if someone had private insurance when they got diagnosed with kidney failure and started dialysis, they could keep their full coverage for [...]
Letter: We Must Protect Dialysis Patients
Those with a sudden and serious illness that requires immediate medical attention are called “crash” patients. My husband Raymond was a crash patient when he was diagnosed with End Stage Renal Disease, or kidney failure. Luckily, Raymond had private insurance, so he didn’t have to worry much about the cost of his life-saving dialysis treatments when he started. Eventually, dialysis patients transition to Medicare as their primary coverage within 30 months after beginning treatment. Yet now, a Supreme Court ruling from last year leaves room for private [...]
Dialysis Patient Citizens Applauds New Legislation Restoring Protections for Dialysis Patients
WASHINGTON, D.C. (December 20, 2023) -- Dialysis Patient Citizens (DPC), the leading advocacy organization for dialysis patients nationwide, today released the following statement applauding the introduction of the Restore Protections for Dialysis Patients Act by Representatives Mike Kelly (R-PA), Yvette Clark (D-NY), Neal Dunn (R-FL), Danny Davis (D-IL), John Joyce (R-PA), and Raul Ruiz (D-CA) to restore access to critical health insurance coverage for patients who choose it. “We applaud Representatives Kelly, Clark, Dunn, Davis, Joyce, and Ruiz for standing with dialysis patients by introducing this critical [...]
Happy Holidays from DPC
We want to wish you and your family a Happy Holiday, as well as a safe and healthy New Year. DPC offices will be closed for the holidays starting December 22 through January 1. We also want to take this opportunity to thank you for your continued support throughout 2023. Though the year posed some challenges, we appreciate you for helping us elevate the dialysis patient voice with policy makers. We are extremely grateful for all of your advocacy efforts, and we look forward to our continued [...]
Idaho Statesman: Dialysis
At the young age of 25 years old, I had to accept the fact that I would need dialysis treatment to survive. Like many Americans with kidney failure, I was too sick to continue working. I lost my employer-provided insurance soon after I stopped working. Since I did not immediately qualify for Medicaid, I was forced to pay the 20% of the bill that Medicare does not cover for 6 months. The costs were extensive, and I am still in the process of paying off that debt. [...]
Congress Must Help Kidney Patients
My wife was diagnosed with kidney failure in January of 2022. I was her primary caregiver until she passed away in June of this year. Now, I dedicate my time advocating for Americans with kidney disease. A pressing problem facing kidney patients in America is the difficulty paying for dialysis, which keeps patients alive. It can cost hundreds of thousands of dollars without insurance. When my wife started dialysis, we had Medicare, but Medicare only covers 80%. We have a private insurance plan to supplement Medicare, which [...]
Happy Thanksgiving from DPC Board, Staff, and Volunteers!
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 [...]
Dialysis
Ten years ago while working for an airline my life changed. I was diagnosed with kidney failure, and I learned I'd need dialysis to survive. Eight years of dialysis and a transplant later, I am writing now to advocate for kidney patients everywhere. For three years, I received dialysis in Dubai, United Arab Emirates. Despite initial difficulties, my dialysis care was relatively seamless. When I returned to the United States, Medicare required that I submit a plethora of paperwork. I had to pay out-of-pocket for more than [...]
DPC Expresses Outrage at CMS Indifference to Dialysis Patient Suffering
On October 27, 2023, the Centers for Medicare & Medicaid Services (CMS) issued its final rule updating payment rates and policies under the end-stage renal disease (ESRD) prospective payment system. This rule fails to address two serious problems currently facing dialysis patients, which DPC raised in its comment letter: workforce shortages and lack of access to innovative treatments. DPC’s statement on the Rule is available here.
Dialysis Patient Citizens Responds to Disappointing Final CMS Rule That Will Harm Patient Healthcare
WASHINGTON, D.C. (October 30, 2023) - Dialysis Patient Citizens (DPC), the nation’s largest patient-led, non-profit advocacy group for dialysis patients, released the following statement in response to the final rule issued by the Centers for Medicare and Medicaid Services (CMS) which only increases Medicare reimbursements for dialysis treatment centers by 1.6% and fails to properly fund access to new therapies. “The End Stage Renal Disease (ESRD) final rule released on Friday paints a chilling picture of an agency that is completely indifferent to the suffering of dialysis [...]
DPC Letter to CMMI on ESRD Treatment Choices Demonstration Issues
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 [...]
Medicare Must Increase Access to Improvements in Dialysis Care
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 [...]
“Securing the U.S. Organ Procurement and Transplantation Network Act” Signed into Law
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 [...]
DPC Commentary Discusses How Workforce Shortages Impact Patients
A commentary about workforce shortage issues authored by DPC Vice President of Public Policy Jackson Williams amplifies findings from this summer’s DPC member survey to explain how ESRD patients have been impacted. The article also discusses how Medicare policies must adapt for an era with fewer working-age Americans and more retirees. The article is available on AJMC’s website: https://www.ajmc.com/view/contributor-medicare-s-leadership-needs-to-confront-our-shrinking-us-workforce, as well as on DPC’s website: https://www.dialysispatients.org/news/medicares-leadership-needs-to-confront-our-shrinking-us-workforce/.
AJMC Contributor Article: Medicare’s Leadership Needs to Confront Our Shrinking US Workforce
Written by Jackson Williams, JD, DPC Vice President of Public Policy Medicare’s administered pricing system has never had to deal with labor scarcity before. Fifteen years ago, the Institute of Medicine issued its report, “Retooling for an Aging America: Building the Health Care Workforce,” that warned of looming health workforce shortages due to demographic changes. The era foreseen by that report has likely arrived. Labor shortages are beginning to impact patient care. Media reports indicate numerous instances of hospitals declaring “contingency standards of care” or ordering ambulance diversions due to [...]
Medicare Policy Proposal Jeopardizes Care for Those on Dialysis
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 [...]
DPC Raises Alarm on Health Workforce Shortages
DPC’s letter commenting on this year’s ESRD Payment Rule warns that Medicare is not addressing workforce shortages that are impacting patient care. The letter reports the following findings from our recent member survey: 62% of patients reported that the recent labor shortages had impacted their care: 43% said that staff turnover disrupted their care; 28% reported delays to their treatment; and 7% reported that they had to change shifts or facilities. In 2013, in response to a question about wait times at facilities, the same proportion of patients, [...]
DPC’s Letter to Hon. Chiquita Brooks-LaSure, Administrator for CMS, on End Stage Renal Disease (ESRD) Prospective Payment System (PPS) Calendar Year (CY) 2024 Proposed Rule (CMS-1782-P)
August 18, 2023 Hon. Chiquita Brooks-LaSure, Administrator Centers for Medicare & Medicaid Services 7500 Security Boulevard Baltimore, MD 21244 Re: End Stage Renal Disease (ESRD) Prospective Payment System (PPS) Calendar Year (CY) 2024 Proposed Rule (CMS-1782-P) Dear Administrator Brooks-LaSure: Dialysis Patient Citizens (DPC) writes to offer its comments on the above referenced proposed rule. 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 [...]