As a journalist, I tend to gravitate to the underdog, believing that’s where I will find the best stories. Home hemodialyzor Richard Berkowitz, who passed away last week at age 67, was one of those stories. And in the world of kidney patient care advocacy, he was indeed an underdog. And so was his modality of choice: home dialysis.
The organization he founded, NxStage Users, later named Home Dialyzors United to ultimately appeal to both peritoneal and home hemodialysis users, was run on a shoestring budget from his Skokie, Ill. home. It had a small army of dedicated people—those who dialyzed at home, partners of those who had experienced home dialysis, physicians who believed in the therapy.
Rich’s enthusiasm for improving the quality of life among those with kidney disease lead to organizing four national conferences devoted to home dialysis. He put together webcasts on how to self-cannulate. He convinced airlines to recognize home dialysis machines as medical equipment that would be transported without fees. He testified before Congress about the need to make home dialysis more accessible to patients who wanted it. As supporters said about him last week upon his death: “He was outspoken in his belief that every single patient deserves to live a normal life on their own terms.”
The last editorial he wanted to write for NN&I was about eliminating the term “end-stage renal disease” because of its dismal implications. In the transplant field, advocates changed use of the term “cadaveric donor,” which had a death-like implication in the face of a wonderful gift, to the more palatable “deceased donor.” Similarly, argued Berkowitz, kidney failure should not sound like a death knell. Let’s call it what it is: a treatable disease. He was a dialyzor, not a patient with kidney failure. He had a chronic illness, but a treatable one. Rich believed that home dialysis, whether it was peritoneal or hemo, gave individuals that ability to make dialysis a necessary part of their life, but not be consumed by it.
How do we make a breakthrough?
We often had long conversations about how to get more patients to not only select home dialysis as their modality choice, but get the therapy they wanted. The 10%-11% penetration was improving, but he knew it had to get better. He talked about the thousands of individuals of working age who could be more productive if they took control of their own treatments, set their own schedule, enjoyed a better quality of life at home.
But there were obstacles: modality education was given inconsistently, with not enough patient mentoring; nephrologists liked to stay in their comfort zone, namely, in-center hemodialysis; and dialysis companies had bricks and mortar with chairs to fill. Selecting home dialysis, even if you got through all that noise, didn’t mean you would get it.
The modality needs an advocate on all levels, and not when it’s just financially advantageous. Dialysis started as a home therapy; it needs to be there for those who want it—and users should have adequate support to get them through the rough spots.
And Rich would be there to help.
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