Dialysis Patient Citizens News
Letters: Action Needed to Help Alabama Dialysis Patients
By Cortney Beavers of Pell City, AL. One of the most difficult moments of my life was finding out that, despite being only 24 years old, my kidney was beginning to fail. After years of dialysis and a kidney transplant, I learned through my experiences in the health care system what needs to be improved. Doctors and nurses need a better care coordination framework to more effectively treat their patients. I had the benefit of working with terrific nurses and other providers who met my needs and [...]
Andrew Conkling: Expanding Medigap coverage for dialysis patients is a welcome and necessary change
Kidney disease has been a major part of my life from the very start. I was born with just one functioning kidney and, defying doctors’ expectations, made it to age 25 before I needed to start dialysis treatments. Through my own experiences with dialysis and my conversations with other patients in dialysis clinics across the United States in the years since, I’ve seen that there are still a lot of barriers that prevent patients who have End-Stage Renal Disease (ESRD) from getting the level of care they [...]
New Bipartisan Effort Could Provide Much-Needed Coverage for NYC Kidney Patients
Living with kidney disease, undergoing dialysis, and ultimately traveling out-of-state to receive a kidney transplant provided me with a harsh lesson in how challenging life with End-Stage Renal Disease (ESRD) can be both physically and financially. It’s already difficult having to go through all these treatments even before considering the financial burdens that come with them. The costs are a lot for patients, and many of them are hit with bills they simply can’t afford. As those costs pile up, patients can become ineligible for treatments that [...]
DPC Advocates Help Push State Legislation Forward
State legislatures are in high gear during spring, and efforts by state legislators to support dialysis patients are in full swing this month. We’ve already had several legislative victories on living organ donor protection bills, while Medigap expansion legislation for the ESRD population has been introduced in multiple states. With support from multiple DPC Patient Ambassadors and Board Members sharing their personal stories on these two policy issues, DPC is making robust arguments for states to actively help improve the quality of life for End Stage Renal [...]
New Year, New Administration Brings Changes to Medicare’s Kidney Demonstration Projects
2021 was supposed to mark the beginning of three new Medicare programs to demonstrate innovations in kidney care, but a last-minute decision from the Center for Medicare and Medicaid Innovation has suspended two of them. This action unfortunately leaves about 50,000 dialysis patients with a nine-month gap in extra assistance they were receiving from a successful program that expired March 31. Here is the rundown on the current landscape of Medicare demonstration projects that impact dialysis patients. Demonstration projects are used by Medicare to test new models [...]
Letter: Medigap Expansion Act needs Delaware’s support
Life on dialysis is hard. It involves several hours-long treatments every week and puts a major strain on everyone involved. It’s a frustrating process that I wouldn’t have been able to get through without my family. The last thing you want to worry about while going through dialysis is the cost. The treatments already weigh on patients and families both physically and mentally, and no dialysis patient should be forced to fear they will be priced out of life-saving care. That is why it is so important [...]
National Minority Health Month
April is also recognized as National Minority Health Month, in an effort to highlight and address the health disparities experienced in minority communities. This is especially prevalent among kidney and dialysis patients; Hispanic or Latino Americans 1.3 times more likely to have kidney failure than white Americans, Black or African Americans are almost 4 times more likely, American Indians and Alaska Natives are 1.2 times more likely, and Asian Americans are also at a higher risk. Additionally, the main risk factors for chronic kidney disease (CKD) disproportionately affect [...]
Letter: Pass Medigap expansion
I never considered the possibility of having kidney disease until I ended up in the emergency room with a life-threatening illness. The doctors told me I was “toxic” and said I had developed kidney disease due to hypertension. Not long after, I started dialysis treatments. Being on dialysis meant I couldn’t work full time, so I wanted to find a way to get involved and help others like me. Dialysis is tough, and I want to use my experiences to help ensure patients can get the care [...]
Support New Kidney Care Act
By Antonio Green of Virginia Beach, VA. While working in Abu Dhabi, I found out I had kidney disease and needed to begin dialysis. I was able to continue working abroad for a few more years, but a 2017 trip to the hospital showed me it was time to move back home. Since then, I’ve noticed that a better, more coordinated system is needed to help dialysis patients. Even when I had a care coordinator, I found the system never really worked for me. Whether it was [...]
April is Donate Life Month
Each April, National Donate Life Month encourages Americans to register as organ, eye, and tissue donors; to become educated about living donation (that includes living kidney donation!); and to honor those that have saved lives through the gift of donation. Over 100,000 children, men, and women are waiting for lifesaving organ transplants, with a new person added to the national transplant waiting list every 10 minutes. Here is some more information on the different types of transplant and what you can do to help. What are the [...]
Statement of Dialysis Patient Citizens on Confirmation of Xavier Becerra as Secretary of Health and Human Services
Dialysis Patient Citizens (DPC) congratulates Xavier Becerra on his confirmation as Secretary of the United States Department of Health and Human Services (HHS). DPC appreciates his dedication to serving our nation and looks forward to working with him on policies that benefit the health and well-being of the millions of Americans suffering from kidney disease, and especially those who require dialysis treatments. Dialysis Patient Citizens is a nationwide, non-profit, patient-led organization dedicated to improving the quality of life for all dialysis patients through education and advocacy. Through our [...]
DPC’s Annual Advocacy Day Application is Now Open! Apply by April 9, 2021
Each year Dialysis Patient Citizens is pleased to bring kidney patients and transplant recipients to Washington, D.C. to meet with their legislators and talk about issues that affect their quality of care. Due to the ongoing pandemic and out of abundance of safety for our patients, this year we will be hosting our fly-in virtually on September 21st, with two opportunities of training beforehand. Participants will be selected based on the quality of their application, legislative priorities, and previous involvement in DPC's advocacy efforts. Next year when we [...]
Bipartisan Living Donor Protection Act Introduced to Protect Organ Donors
Congressman Jerrold Nadler (D-NY) and Congresswoman Jamie Herrera Beutler (R-WA), 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. The Family and Medical Leave Act (FMLA) does not specify that living organ donors can take unpaid leave to recover from their donation and does not guarantee that donors will have a job waiting for them after surgery. Further, according to a 2007 study in the American Journal of Transplantation, as many as [...]
Bipartisan, Bicameral Members of Congress Urge Biden Administration to Finalize Organ Procurement Reforms
A coalition of congressional leaders from the Senate Committee on Finance and the House Committee on Oversight and Reform today urged the Biden administration to finalize a rule to reform the organ procurement system in the United States. The letter, sent to Acting Health and Human Services (HHS) Secretary Norris Cochran was signed by Senate Finance Committee Chair Ron Wyden, D-Ore.; Senators Chuck Grassley, R-Iowa, Ben Cardin, D-Md., and Todd Young, R-Ind.; House Committee on Oversight and Reform (COR) Committee Chairwoman Carolyn B. Maloney, D-N.Y., and Ranking Member [...]
Dialysis Patient Citizens Commends Reintroduction of the Jack Reynolds Memorial Medigap Expansion Act
WASHINGTON, March 9, 2021 /PRNewswire/ -- Dialysis Patient Citizens (DPC) released the following statement today thanking Congresswomen Cynthia Axne (D-IA-03) and Jaime Herrera Beutler (R-WA-03) for introducing the Jack Reynolds Memorial Medigap Expansion Act (H.R. 1676) in honor of founding DPC Board member and longest-serving president Jack Reynolds. The bill, which was originally introduced last year, would expand Medigap coverage for patients under 65 who suffer from End-Stage Renal Disease (ESRD). "Currently, it's up to each state to determine whether Medigap plans are sold to the more than 9 million people younger than 65 years old [...]
DPC’s Letter to Elizabeth Fowler, Deputy Administrator for CMMI
Ms. Elizabeth Fowler, Deputy Administrator Center for Medicare and Medicaid Innovation 2810 Lord Baltimore Drive Windsor Mill, MD 21244. Dear Ms. Fowler: We are seeking a bottom-up review of the ESRD Treatment Choice (ETC) demonstration including consideration of other options to pilot innovations to improve home dialysis take-up and kidney transplantation. Like other kidney advocates, we appreciated the long-overdue cabinet-level attention that was paid to these issues under the Trump administration. But, the ETC program is flawed in concept and execution, and represents a missed opportunity to address [...]
Dori Wolf: Kidney Care
By Dori Wolf of Woodland, CA, DPC Patient Ambassador Finding out I had kidney disease in 1984 forced me to change a lot in my life. Thankfully, due to my work to stay healthy, I was able to avoid needing dialysis until 2007. Starting dialysis was a draining experience that required drastic changes to my diet and exercise habits, despite constantly feeling unwell. However, with the support of my family, I’ve been able to follow doctors’ advice and keep up with treatments. A major frustration, however, has [...]
DPC Advocates Advance Dialysis Patient Issues at the State Level
Despite the ongoing pandemic and economic crisis, many state legislators recognize the added challenges faced by dialysis patients every day. Some have responded by introducing legislation to increased dialysis patient access to Medigap plans to help patients cover their 20% coinsurance expenses. Others are working to advance legislation to help increase the pool of living kidney donors. DPC would like to recognize some of the patient leaders who are elevating the patient voice by educating state legislators on the importance of these efforts. DPC Board Members Adrian Miller [...]
The BETTER Kidney Care Act is an important step forward
By Bryce Mumford, DPC Patient Ambassador My experience with dialysis extends four years: from when my first kidney transplant failed in 2014 to when I received my second transplant in 2018. During that time, the most frustrating thing I encountered was a lack of care coordination. I bounced between several doctors who treated my various health issues independently. Every doctor’s visit required me to provide my full medical history, which was time-consuming and labor-intensive. This was a burdensome task while still working a full-time job to support [...]
President Declares State of Emergency in Texas
The winter storm that recently crippled the state of Texas was difficult to watch, knowing millions of people were struggling to access electricity, heat, and clean water. But this situation was even more dire for dialysis patients whose lives literally depend on these resources, as well as the access to safe transportation to them. If you or a loved one are in need of assistance after this storm, please visit https://www.disasterassistance.gov/ to apply for assistance. Additionally, as a dialysis patient, should you ever find yourself in an emergency [...]