At 20 years old, I was diagnosed with end stage renal disease (ESRD), or kidney failure. Two years later, I began receiving dialysis. I was employed upon diagnosis, but lost my job before beginning dialysis. I began dialysis on Medicare. Since Medicare only covers 80%, and my disability income disqualified me from Medicaid, I could not cover the remaining 20%. I went deep into medical debt just to survive. Six years of dialysis, a kidney transplant and 15 years later, I can now say that I am out of debt. I became a nurse, received an MBA, worked hard, and paid it off. Many aren’t so fortu ..read more

Rep. Payne Received Dialysis Treatment and Supported DPC Advocacy Efforts WASHINGTON, D.C. (April 24, 2024) – Today, Dialysis Patient Citizens (DPC) Board President Andrew Conkling issued the following statement on the passing of Rep. Donald Payne Jr. (D-NJ). Rep. Payne received dialysis treatment, advocated for better care and insurance coverage for dialysis patients, and spoke at a DPC advocacy event in Washington, DC. “We are deeply saddened to learn of the passing of Congressman Payne, who was a true friend to Dialysis Patient Citizens and a tireless advocate for dialysis patients across t ..read more

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 li ..read more

Since our founding 20 years ago, Dialysis Patient Citizens (DPC) has had the privilege of working with amazing advocates to help elevate the patient voice with policy makers to improve their quality of life. At our upcoming Advocacy Day Conference, May 5 – 7, 2024, we are excited to: honor the incredible work of our patient advocates; thank key Congressional Champions; and recognize some of our kidney community allies. Advocates from across the country will also take their stories to Capitol Hill to advocate for additional patient protections. To all of our patient advocates, family members, c ..read more

To Whom It May Concern, Like many patients with End Stage Renal Disease (ESRD) – or kidney failure – my diagnosis came as a shock. About a decade ago, I went to my doctor feeling ill. I discovered that my kidneys were failing and I had to get on dialysis, the costly but life-saving treatment which replaces my kidney function. I have been on dialysis ever since. My healthcare journey has been difficult, and many ESRD patients like me deal with financial challenges as a result of the diagnosis, too. I did not have health insurance upon beginning dialysis, so I enrolled in Medicare, which onl ..read more

My husband Raymond and I met on a blind date. Three months later, his kidney unexpectedly failed, and I have walked alongside him on his patient journey ever since. My husband’s life depends on dialysis, the treatment that does what his kidney can’t do. Unfortunately, we confronted problems with our dialysis center that reflect larger trends caused by insufficient reimbursements from the Center for Medicare and Medicaid Services (CMS). Our nation is confronting a demographic crisis, with fewer working-aged people and more patients, which is why we are seeing worsening shortages of health c ..read more

In the United States, dialysis treatment should be affordable. Unfortunately, inadequate coverage for dialysis often plunges patients into debt. Dialysis should not bankrupt you. In our system, Americans on dialysis almost always wind up using Medicare. Since Medicare only covers 80% of the bill, patients must figure out how to cover the remainder. I was on dialysis for 10 years, and I received a kidney transplant in 2018. I was forced to stop working when I began dialysis, but my mother’s private insurance covered my bill. Private insurance helped me immensely; however, a recent Supreme C ..read more

I have chronic kidney disease. Thankfully, my kidneys are still functioning, but they are at risk of failure any time. I became a dialysis patient advocate because I may eventually have to withstand the difficulties that come with dialysis in America. I am fighting for my future and for the future of all dialysis patients in America. I am concerned with a recent Supreme Court decision that allows private insurers to essentially push new dialysis patients off of their private insurance and onto Medicare soon after beginning treatment. This puts the health and well-being of those a ..read more

As a patient with End Stage Renal Disease (ESRD), or kidney failure, I know how health care workforce shortages can affect patients. I have been on dialysis for 7 years. At the clinic where I receive dialysis – the life-saving treatment which replaces my kidney function – any staff shortage can mean the difference between a smooth treatment and chaos. America is facing a historic health care workforce crisis. Staffing challenges and high demand have led to gaps in care like longer emergency room wait times. Unfortunately, Medicare is failing to address inadequate staffing and car ..read more

We Americans with kidney failure must accept the fact that we will be in medical debt for the rest of our lives. To pay for dialysis treatment, some patients keep working and use private insurance. Others live in states that supplement the other 20%. For me, although I have my husband’s private insurance, we still owe thousands of dollars out-of-pocket. I was a single mom when I started dialysis ten years ago, and money has always been tight. I have not been able to pay much more than the minimum payments on my medical debt. For patients just beginning dialysis, the financial burden can be ..read more