I was 16 when I started dialysis. I spent 17.5 years in treatment before receiving a transplant nearly 10 years ago. But a transplant isn’t a cure — it’s another type of treatment for my kidney failure, one that still requires lifelong medications, labs and procedures. Even with coverage, I’ve seen how hard it can be for patients to access treatments they need. Too many people I’ve met on this journey, including those in my local kidney support group, struggle to get therapies that could improve their quality of life, like treatments for pruritus, anemia, phosphorous control or infection prevention. [...]

Editor: I spent seven years on dialysis — the only treatment outside of a transplant for kidney failure — before receiving a kidney transplant in 2023. Every day I spent hooked up to that machine was a reminder of how fragile life becomes when your kidneys fail. Before my diagnosis, I was healthy; I was an athlete and musician. But after my diagnosis, I lost my job and my employer insurance with it. Bills piled up fast. It wasn’t until a social worker helped me apply for Medicare and Medicaid that I got the coverage I needed .But I know [...]

To the editor: Kidney failure changed everything for me. I was already grieving the loss of my husband, daughter, and grandson when I learned my high blood pressure and diabetes had gone unchecked for years, leading to total kidney failure. Within weeks, I had to start dialysis. The first day, I sat in my car and cried. I wasn’t just scared for my health, I was terrified of the financial toll. I now rely on Medicare and Medicaid, but even then, I have to pay out of pocket for critical medications and vitamins. I want to work, but I can’t. [...]

Editor: I was on dialysis — a treatment that kept me alive while my kidneys failed — for five years before receiving a kidney transplant. I was fortunate to keep private insurance for the first 30 months and then transition to Medicare along with New York’s supplemental coverage. Medicare’s approach to dialysis care falls short. There was little change in the treatments I received over the years. I, and many others like me, lacked access to innovative treatments that help control phosphorus, prevent itchy skin, manage anemia, and prevent potentially fatal infections. That’s because Medicare reimbursement for new drugs and [...]