By Dortha Pugh-Thompson, DPC Patient Ambassador When my doctor told me I had kidney disease, I wasn’t aware of just how serious it was. Two years later, though, I passed out and woke up in the emergency room, where doctors said I was experiencing both kidney failure and heart failure. Shortly after, I started dialysis. Fortunately, I was able to do in-home dialysis and remain active in my community and my church. Now, even after receiving a transplant, I’ve found my calling as an advocate for dialysis patients, and I am passionate about helping others through their treatments. Over the [...]
DPC patient activists and health care professionals from across the country met with Members of Congress and their legislative staff to advocate on behalf of dialysis patients during DPC’s Annual Advocacy Day on September 15, 2020. This was DPC's largest Annual Advocacy Day with representatives from 32 states and close to 200 virtual Congressional office meetings. It was also DPC's first virtual Advocacy Day due to the COVID-19 pandemic—all Congressional meetings were held via telephone. Advocates asked Congress to ensure all dialysis patients gain access to Medigap through passage of the Jack Reynolds Memorial Medigap Expansion Act. They also discussed the [...]
The BETTER Kidney Care Act (H.R. 8254/S. 4574) was recently introduced by Senators Young (R-IN) and Sinema (D-AZ), along with Representatives Blumenauer (D-OR) and Smith (R-MO). This bill would enhance access to care coordination services for thousands of patients across the United States currently living with End-Stage Renal Disease (ESRD). It could also help with services not covered by Medicare such as dental care and transportation. Coordinated care is essential for improving the overall care and health of ESRD patients. Specifically, better care coordination could mean help for patients with: scheduling doctors’ appointments, reviewing their medication regime, dealing with dialysis [...]
WASHINGTON, D.C., (September 16, 2020) -- Dialysis Patient Citizens (DPC) today applauded introduction of the BETTER Kidney Care Act (H.R. 8254/S. 4574) by Senators Todd Young (R-IN) and Kyrsten Sinema (D-AZ) along with Representatives Earl Blumenauer (D-OR-3) and Jason Smith (R-MO-8). This bill would enhance access to care coordination services for thousands of patients across the United States currently living with End-Stage Renal Disease (ESRD). "We applaud Senators Young and Sinema along with Representatives Blumenauer and Smith for introducing the BETTER Kidney Care Act. We are grateful for their continued leadership and efforts to improve the lives of Americans who suffer from kidney disease," said DPC Board President [...]
Each year—typically during the summer—the Centers for Medicare and Medicaid Services (CMS) puts out rules for how they are going to pay for dialysis treatment. The rules reflect CMS’ latest policies, and organizations have the opportunity to provide feedback about the rules before they go into effect on January 1. DPC provided feedback to CMS regarding their End-Stage Renal Disease (ESRD) Annual Payment rule. DPC’s letter addresses the following important topics for improving ESRD patient care: Protect Access for Costlier Patients by Completing Reconsideration of Case-Mix Adjusters Protect Access for Patients in Disadvantaged Regions by Addressing Social Risk Factors Focus [...]
Jeff Needham turned his lifestyle around with diet and exercise after he was diagnosed with kidney disease. A true inspiration, Needham competed in two Olympic distance triathlon relays, as well as a three-day, 230-mile cycling ride, in support of a better health care system. In addition, Needham warns about the increased dangers of COVID-19 for dialysis patients and highlights the benefits of participating in a coordinated care pilot program.
Elevate the Voice of Patients with Kidney Disease and Their Caregivers Our 2020 Annual Membership Survey is live, and it will remain open until Friday, August 21. We are counting on your participation, as patient feedback helps to shape our public policy agenda and patient education priorities for the next year. This year we ask that both patients and caregivers take our survey. Rest assured your responses will remain completely anonymous. We only share the overall survey results with state and federal level policy makers, so they will better understand your needs, experiences, and preferences. Your feedback is crucial. Therefore, we will [...]
Gloria Rohrer lost a leg after needing multiple surgeries when her kidney transplant failed. Rohrer later lost her eyesight in one eye while vacationing in Florida, which could have been avoided with proper care coordination. She could have shut down and become angry with the world, instead Rohrer became a stalwart advocate for patient access to care coordination services, so that others can avoid similar complications.
Dialysis Patient Citizens Files Lawsuit Against HHS Secretary Alex Azar and CMS Administrator Seema Verma Over New Regulation That Undercuts Dialysis Patient Access to Affordable, High-Quality Care
WASHINGTON, D.C., (June 22, 2020) -- Today, Dialysis Patient Citizens (DPC) filed suit in the United States District Court for the District of Columbia against Health and Human Services Secretary Alex Azar, Centers for Medicare and Medicaid Services Administrator Seema Verma, the U.S. Department of Health and Human Services, and the Centers for Medicare and Medicaid Services in opposition to a discriminatory new federal regulation that will limit the ability of hundreds of thousands of End-Stage Renal Disease (ESRD) patients to access affordable, high quality treatment. “ESRD patients successfully fought to get Congress to pass bipartisan legislation that would ensure [...]
Dialysis Patient Citizens is excited to announce that the new Kidney Care Matters website is live. This initiative, led by DPC, is focused on promoting better kidney care through care coordination for people with End-Stage Renal Disease. Coordinated care means that all health care providers serving a patient share information with each other in a timely manner about the patient’s health, treatments prescribed, and care delivered. Well-structured care coordination has the potential to provide a more focused, dedicated care management approach that would streamline care, improve health outcomes and reduce healthcare costs. Kidney Care Matters is dedicated to providing patients [...]