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.

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http://kidney-pain.o rg/his-co mpassio n-fo r-getting-peo ple-ho me/
His (com)passion for getting people home
As a journalist, I tend to gravitate to the underdog, believing that’s where I will f ind 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.
T he organization he f ounded, NxStage Users, later named Home Dialyzors United to ultimately appeal to
both peritoneal and home hemodialysis users, was run on a shoestring budget f rom 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 f or improving the quality of lif e among those with kidney disease lead to organizing f our
national conf erences 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 f ees. He testif ied bef ore 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 lif e on their own terms.”
T he last editorial he wanted to write f or NN&I was about eliminating the term “end-stage renal disease”
because of its dismal implications. In the transplant f ield, advocates changed use of the term “cadaveric
donor,” which had a death-like implication in the f ace of a wonderf ul gif t, to the more palatable “deceased
donor.” Similarly, argued Berkowitz, kidney f ailure 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 f ailure. 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 lif e, but not be consumed by it.
How do we make a breakthrough?
We of ten 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. T he 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
lif e at home.
But there were obstacles: modality education was given inconsistently, with not enough patient mentoring;
nephrologists liked to stay in their comf ort zone, namely, in-center hemodialysis; and dialysis companies
had bricks and mortar with chairs to f ill. Selecting home dialysis, even if you got through all that noise,
didn’t mean you would get it.
T he modality needs an advocate on all levels, and not when it’s just f inancially advantageous. Dialysis
started as a home therapy; it needs to be there f or those who want it—and users should have adequate
support to get them through the rough spots.
And Rich would be there to help.
Recent articles about Richard Berkowitz
Smoke and mirrors: What is really behind protests over the ESRD bundle payment cut?
NYT looks at renal industry’s lobbying efforts to fight ESRD bundle cuts

2. Home Dialyzors United responds to proposed Network Scope of Work