Summer Savings! Get unlimited digital access for 13 weeks for $13.
Op-Eds
News Opinion Op-Eds

Freedom for dialysis patients

On Tuesday, I'm lucky to be speaking at Home Dialyzors United's third-annual meet up and conference in Baltimore. As an end stage renal disease patient currently doing home hemodialysis treatment, this is an issue I am passionate about. And, mostly because I'm an actual home dialysis patient, I'm able to attend the conference — since my dialysis travels with me — to speak firsthand about the benefits of home dialysis and help spread the word. It's an important conversation that I don't think happens nearly enough.

My life changed about eight years ago, when I went in for gallbladder surgery only to discover that my kidneys had already lost 50 percent of their function due to an undiagnosed condition — primary hyperparathyroidism — and that I would eventually need to be on dialysis. Three years later — an important three years because I had the chance to learn a lot and talk with fellow patients — I began home hemodialysis treatment, and I continue it at home today while I wait for a kidney transplant.

Dialysis is certainly challenging; it can be also be exhausting, debilitating, frustrating, time consuming, and so much more. But there is a better way of dialysis, and it doesn't have to be so hard. Being someone with end stage kidney disease and on dialysis doesn't mean your life is over, but your life is going to significantly change. The good news is that with the technology available to run treatments at home, you can have a better quality of life, doing shorter, more frequent treatments at home or even on the go, that more closely mimic typical 24/7 kidney function.

Home hemodialysis for me and others like me allows a freedom and flexibility that in-center treatment simply does not. It means that I get to do most all the things that are important to me, work, and spend time with my friends and family. It also means I am able to travel here to Baltimore to talk about my experience — something I didn't think would ever be possible before I started home hemodialysis.

It makes sense that 90 percent of nephrologists say they would choose a home dialysis therapy for themselves or suggest it to their loved ones if they were told they needed renal replacement therapy, with home hemodialysis being the preferred modality choice. Yet this treatment option is surprisingly underused. More than 90 percent of patients on dialysis in the United States are doing treatment three-times-a-week in a center, largely because of unintended barriers that currently prevent more dialysis patients from taking advantage of this life-changing treatment option.

I believe this can — and should — change.

Today, more than 570,000 Americans are living with end-stage renal disease, most of whom are dependent on dialysis treatments to replace their kidney function. For many patients, home hemodialysis is a treatment option that could work well and should be available to them.

For this to happen, patients need better education on the types of therapies available to them and more support among nephrologists and dialysis providers offering home hemodialysis training. In addition, further improvements in Medicare reimbursement can help support greater awareness and availability of home hemodialysis, and other home therapies. The difference that makes in my living a full life on dialysis is amazing, and so many others can and should be able to experience that.

Right now, here in Baltimore, the Centers for Medicare & Medicaid Services (CMS) is reviewing its proposed rule for changes to the End-Stage Renal Disease Prospective Payment System for 2013. CMS has been asked by the renal community to correct the current payment structure that is not sufficient to foster more home hemodialysis training in order to make this life-changing modality more accessible to Medicare patients with end-stage renal disease. I encourage CMS to do what they need to do — what is in the best interest of patients — to make sure all patients who can benefit have access to dialysis at home.

At the Home Dialyzors United conference, countless personal stories will be shared about the lives that have been changed by home dialysis. I hope CMS will be listening to the all important patient perspectives and will take the necessary steps to make sure every patient that can benefit from home treatment has access to it.

Kathe LeBeau is an active kidney patient advocate and director of patient services and public policy for the Northeast Kidney Foundation. She lives in Latham, N.Y. Her email is Kathelebeau@gmail.com.

Copyright © 2015, The Baltimore Sun
Related Content
  • Medicare cuts for dialysis would be disastrous for people with kidney disease

    Medicare cuts for dialysis would be disastrous for people with kidney disease

    The Centers for Medicare and Medicaid Services (CMS) is proposing a 10 percent cut to the Medicare payment for dialysis — a proposed reduction that is ill-advised, to say the least ("Medicare cuts hit dialysis hard," July 15).

  • Defining 'opportunity' in Baltimore

    Defining 'opportunity' in Baltimore

    In the wake of Freddie Gray and the unrest in Baltimore, the recent release of the Regional Plan for Sustainable Development may mark an important step toward creating a more sustainable and equitable region. The plan makes clear that marked disparities in access to quality education, jobs, safety...

  • Dictatorial polls determine fate of GOP candidates

    Dictatorial polls determine fate of GOP candidates

    Public-opinion polls, once employed by political consultants to gauge the concerns of voters as a means to shape their candidates' campaigns more effectively, have become the tail that wags the dog.

  • Judging the faith of nuns

    Judging the faith of nuns

    A group of appellate judges recently decided to take up theology while writing a legal opinion. As might be expected, they got into trouble.

  • Ending veterans' homelessness in Baltimore

    Ending veterans' homelessness in Baltimore

    Homelessness is a complex condition. About 45 percent of homeless veterans suffer from mental health illnesses, including post-traumatic stress disorder. About 70 percent of homeless veterans suffer from substance abuse and addiction issues. Many homeless veterans suffer from weak social networks...

  • The perils of bail reform

    The perils of bail reform

    Recently, there has been much discussion in Maryland and nationally about reforming the bail system, but some policymakers and judges appear to be headed down a dangerous path that ultimately puts public safety at risk. These discussions are based on an abandonment of the concept of bail when releasing...

  • Response, recover and rebuilding Baltimore

    Response, recover and rebuilding Baltimore

    There have been many accounts of the city's response on April 27th and the days following. In this last of my six-column series, I'd like to share the story of the Baltimore City Health Department's immediate response and ongoing recovery efforts.

  • How to kill the summer job

    How to kill the summer job

    I had a lot of summer jobs. I was a foot messenger in New York for a couple of summers. I worked as a receptionist and mail room flunky. Before my junior year of high school, I briefly sold ice cream snacks — sort of yuppie bonbons — on the street for a company called Love Bites. The uniform was...

Comments
Loading
84°