Dear Editor: In 2015, I was raising my family, preparing for law school, and building a future I believed in. Then, seemingly overnight, my life changed; I was diagnosed with kidney failure. The years that followed were some of the hardest I’ve ever faced. I’m beyond grateful that I received a kidney transplant in 2021, but the road there was long, painful, and at times, discouraging. What stands out most from that journey is just how outdated and underfunded kidney care in this country still is. Medicare doesn’t go far enough to support dialysis centers or encourage the kind of [...]

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 [...]

I was not looking for kidney disease when it found me. It surfaced during a routine pre-op workup for a completely unrelated procedure. After advocating for myself and pushing for a follow-up, I was diagnosed with chronic kidney disease in 2021. I am not on dialysis yet, but I know it’s not a question of if but when. That reality drives me to advocate. I have friends in the dialysis community living this right now, and I watch them navigate a system that too often fails to keep pace with the treatments that could help them. Innovations in kidney care, [...]

In 2020, COVID-19 caused my kidneys to fail. I spent five months in the hospital, four of them on a ventilator, and my wife was called and told to consider pulling the plug and letting me go. I survived, spent two years on peritoneal dialysis, and eventually received a lifesaving kidney transplant in 2023. Living through kidney failure opened my eyes to the fact that too many people don't know what help and resources are available to them, and that's because no one tells them. That has to change, and so does the way we support patients while they're on [...]

I learned I had polycystic kidney disease just before my wedding. What followed was 13 years of dialysis, the loss of my husband before he could donate his perfectly matched kidney, and years of fighting through grief, illness and uncertainty. Kidney disease affects entire families. In my case, because polycystic kidney disease is genetic, multiple relatives have faced dialysis. That’s why I became an advocate, a social worker and an educator. I’ve spent years writing books and hosting “The Lisa Baxter Show” to help patients understand how to care for themselves and navigate treatment. Patients need more than dialysis. They [...]