“LOOK!” I yelled in his face. “What’s in this case costs more than you and I make in a year! It is NOT leaving my sight! If it goes under the plane, I’m going under with it!”
Eventually, Magilla Gorilla relented. And a place was found onboard for my cycler.
Tragically, from what I’ve since come to understand, mine was not an unusual nor isolated experience. Hopefully, it’s one that will not be repeated in the future, thanks to the aggressive lobbying of Home Dialyzors United.
This summer, HDU persuaded the U.S. Department of Transportation to issue an official guidance letter to the airline industry outlining the regulations to carry portable dialysis machines for passengers with disabilities – free of charge, of course.
By law, all U.S. air carriers are required to carry assistive devices for the disabled without charge. But previous regulations spoke primarily to such equipment as wheelchairs, oxygen units, canes and personal respirators. There was no specific mention of portable dialysis machines, which have become increasingly more common in recent years as more and more Americans with kidney failure opt to do dialysis at home – more than 40,000, according to best estimates.
“It’s a huge victory for home dialyzors who have been discriminated against when traveling by air with their portable dialysis machines,” says Rich Berkowitz, founder and president of HDU. And he is one of them: His crusade began in January 2010 when, flying for the first time since going on home dialysis, he was denied permission to bring his portable equipment on board.
“I got into a huge fight with the [airline] managers, and finally ended up talking to a supervisor who let us put the machine on,” Berkowitz recalls.
Here is something everyone who has ever met Rich Berkowitz knows well: Don’t cheese him off, or give him a cause. The airline did both.
He filed a complaint with the Department of Transportation and sent an email to the CEO of American Airlines, with a copy of his DOT complaint attached. “So I got a call back,” he says. “But American really ended up doing nothing.” Rich began hearing similar complaints: one poor home hemodialysis patient had to miss his flight and return home when United refused to allow his life-preserving apparatus to fly with him. Another DOT complaint, another CEO communiqué.
Rich wrote an open letter to the airlines and posted it on his website, http://homedialyzorsunited.org/. But he didn’t stop there. As founder of the Friends of the Congressional Kidney Caucus, Berkowitz has cultivated a few BFFs on Capitol Hill. He consulted each of them until he found one with a good hook into the DOT. And in June, an official revised set of assisted devices guidelines was announced that now includes portable dialysis machines. Since then, a foreign airline, the state-owned Caribbean Airlines Limited, has followed suit.
“Here’s the thing,” Rich says. “Forget about the fact that I did it. The fact is, somebody did it. Somebody took the initiative and was persistent enough to get this thing done. The message we have to get across to dialysis patients is, we can make change.”
I was reminded of all this while soaking up knowledge at the HDU’s annual showcase event this week. The nonprofit Home Dialyzors United is the only dialysis patient organization dedicated exclusively to home dialysis. The group is – oh, who am I fooling? The group is Richard Berkowitz.
He is the originator, guiding force and conscience of HDU. Rich is haggis on two legs: an acquired taste if ever there was one. Irascible, cynical, blunt, tenacious…the next words he minces with anyone will be his first. But his unbridled passion for home dialysis and kidney patients oozes through his every pore, and as the tale above demonstrates, he gets things done.
His two-and-a-half day conference was a true eye-opener. The location, the sumptuous Rosen Centre Hotel, was more resort than meeting place. Presenters included a psychologist from Denmark. The second HDU awards banquet featured the man generally considered the father of home dialysis, Dr. Christopher Blagg of Seattle, and honored Dr. Christopher Hoy, medical director of the Rubin Centers in Albany, NY, who championed the first home hemo program in New York.
The event brought together some of the nation’s most prominent nephrologists along with patients, nurses, care partners and renal professionals, to share information and support while achieving the one-on-one face time hectic schedules almost never allow. The “Meet Up” was a place to ask questions informally, share experiences, find hope. (Although I’m not quite sure about that name.)
It was an amazing gathering. I can’t wait to go again next year.
But being a one-man band, even with the assistance and care of Rich’s delightful wife, Karen, can exact a toll. Late on the first full day of the conference, Dr. Victor Gura, the internationally renowned UCLA nephrologist who invented the wearable artificial kidney, was wrapping up his presentation; Berkowitz, seated in his customary spot on the front row of the gallery and clearly exhausted from his organizational duties, had fallen fast asleep.
Gura couldn’t resist: “If you’d like to see the slides from my talk again,” he said, “I’m sure they’ll be placed on the website by Rich – Rich! RICH!” Rich didn’t move, until Karen walked up to gently embrace him awake.