Friday, January 24, 2014

Requiem for a Heavy Hitter

One of my last blog postings of 2013 focused on Rich Berkowitz, founder and crusader of the patient advocacy group Home Dialyzors United, and the eye-opening experience I had in Orlando as a guest speaker at his annual convention.

I recently realized that this JK entry was going to include Rich, too. But not like this. Not like this.

Rich Berkowitz, R.I.P.
After complaining the past several months of being rundown and out of sorts – and when wasn't Rich complaining about something, usually the lack of treatment options offered to new dialysis patients, the nephrologist-patient relationship or the failure of U.S. airlines to carry portable dialysis machines free of charge – Richard Berkowitz's never-ending fight on behalf of those with kidney disease ended abruptly this week. I think his big, battered body just gave out.

Rich died unexpectedly – and that is the correct word, "unexpectedly," because it seemed like he could roll on forever through his cussedness and tenacity alone – and it's going to take the renal community quite some time to recover from the shock.

I once told Rich I thought of him as "an anchovy on two legs," an acquired taste if ever there was one. And a salty one, at that. He bestrode his world like an obsessed monk. The first time I met him, at a meeting of The Renal Network patient advisory board to which we both belonged, I absolutely could not stand him. I thought he was loud, aggressive, overbearing, unkempt and a know-it-all. (Other than that....) I remember coming home after that initial encounter and blurting out to my wife, Karen, as I walked through the door, "I've got to tell you about this guy I met at the board meeting today."

For some reason, however, like the cat that always rubs up against the one person in the room who's allergic to it, Rich seemed to take a liking to me. He would seek me out at subsequent renal meetings, sit next to me when he could, and whisper additional background details in my ear about whatever topic was being discussed at that moment.

Slowly, I came to realize that the guy really knew his stuff. While his grasp of Robert's Rules of Order wasn't always the best, it dawned on me that he often interjected his viewpoint not to be rude, but because he frequently did know more than the person speaking and wanted to keep discussions factual and on point. Finesse was not Rich's strong suit.

He lobbied relentlessly on Capitol Hill, re-energizing the Congressional Kidney Caucus and striving to educate members of Congress about home dialysis and the needs and rights of patients. Last year he spearheaded a campaign that convinced the U.S. Department of Transportation to include portable dialysis machines as medical equipment that must be transported free of charge by commercial airlines. He was singleminded in his belief that every dialysis patient was worthy of respect and the right to choose the treatment that allowed him or her the highest quality of life.

I was dumbstruck when Rich invited to fly me to Orlando last October to speak at his annual Home Dialyzors United (HDU) "Meet Up and Conference," giving a presentation from a patient's perspective. I was even more flabbergasted when I arrived there. His "Meet Up" was held at a gorgeous, three-star Florida resort and attracted some of the biggest names in the renal universe, all attending because of the relationships Rich had forged with them.

For my part, everything that could go wrong with my presentation surely did. We discovered at the very last moment that my accompanying slide package wasn't compatible with the resort's projection equipment, and we couldn't transfer the slides onto a flash drive in time. I stood in front of a packed conference room and completely winged it. I was dejected and embarrassed afterwards, but Rich was completely supportive. "You were great!" he enthused. "You had them hanging on your every word!" He did have a softer side, although he tended to hide it well.

The last time I saw Rich Berkowitz was in suburban Chicago last December, when we both attended a wonderful presentation by hip-hop artist David Rush (aka Young Bo$$) sponsored by The Renal Network and NxStage. Rush completed an exhaustive multi-city concert tour with Pitbull despite being on dialysis, and his story was as inspiring as it was entertaining. That was the tale I planned to tell in this space – I'll get to it soon – and of course Rich was a part of the story.

After the event, he collared Rush and called me over to meet him. We asked someone to take a photo of the three of us on my iPhone, and it wasn't until I returned to my hotel that I discovered my phone was missing. I talked to Rich a day or so later, and in his typical fashion he commanded, "You better find that phone! I want that picture!"

Well, I lost my phone, and now we all have lost Rich. I couldn't possibly imagine myself writing this after our first meeting, but I grew to think of Richard Berkowitz as a good man and a good friend, and I hope he felt the same about me. I will truly, truly miss him.