Actor in DC as National Kidney Foundation advocate

Actor in DC as National Kidney Foundation advocate

By Jeanné McCartin
features@seacoastonline.com
March 13, 2008 6:00 AM

Portsmouth actor/director Tim Robinson endures dialysis three times a week, four hours per session. It's certainly not the way he cares to spend his time. But it is what it is and will remain so for the foreseeable future — and undeniably beats the alternative.

If he can help one person avoid the same circumstances it would give greater purpose to his own, he says. With that in mind he headed to the nation's capital for World Kidney Day 2008 — celebrated March 13 — as a People Like Us advocate with the National Kidney Foundation (NKF) to speak to congressional delegations.

Robinson and the NKF hope these efforts will help secure an increase in federally funded research to improve prevention, detection and treatment of chronic kidney disease, transplantation and dialysis through the National Institutes of Health and more education opportunities.

"I have failed kidneys, the renal function is right down to pretty much zero," says Robinson. "I arrived at that because of my diabetes. I didn't really understand early on in the game my kidneys were going to go there. And when I did it was a little too late to do something about it."

Robinson has a lot of company. Twenty-six million or one in eight American adults have chronic kidney disease, (CKD); 485,000 have irreversible kidney failure, or end-stage renal disease (ESRD), requiring dialysis or kidney transplants to survive. CKD is the ninth leading cause of death in the United States.

Kidney failure was likely to happen "one way or the other," given his diabetes, says Robinson. But a better understanding and earlier control earlier may have stayed off the disease's later stages for some time.

For example diet is "very important," he says. "I didn't do it for the longest time. That's actually common, a denial function for diabetics," he says. "What I did heavily affected how fast I ...; lost kidney function."

He sees it in others with his disease, the tendency to disbelieve what diabetes can do to the body; does to the kidneys.

Robinson hopes his trip to Washington, D.C., will get the word out and positively affect another's life. "I'll be there advocating for funding for early detection ... and (education) for understanding kidney failure. ...; If people get screened early it could keep them away from where I am so soon."

Robinson, who is one of 25 advocates chosen from throughout the United States, first heard about the advocacy program from a nutritionist during one of these dialysis sessions. "She came to me. She knew of my theater stuff. She thought I might be articulate or knew me as that. I read the information and I thought why not; it's a way of using my communication skills to good effect."

The NKF interviewed him by phone. ("I admit I didn't know it was an interview.") Shortly after they called him back and said he'd been selected. While there is no salary, all expenses "even the taxi from the airport" are paid for.

Robinson, who also writes theater reviews for Spotlight magazine, left for D.C. on March 11 for a two-day stay. His schedule includes a day of training, then meetings with congressional delegations, along with a NKF representative. "We get to walk around on the hill and see the political side of things. It's interesting all around."

The need for dialysis has changed Robinson's life dramatically. In his case it prohibits him from working full time; the weekly sessions leave him exhausted. It also makes common activities difficult. Once able to hop on a plane to return to his native England, these days it's "a four-act opera." Planning and arrangements need to be carefully made. "It impacts your life in ways you don't think of. ...; It impacts everything I do."

Early detection and proper education could have helped, physically and economically, says Robinson. The United States picks up a hefty tab for kidney disease. Eighty-percent of those with ESRD rely on Medicare for their primary health insurance; 33 percent of them are dually eligible for Medicare and Medicaid. What this translates to in annual coast is $20 billion in Medicare for ESRD, $42 billion in Medicare for CKD. The cost of a single transplant is $103,000 and for dialysis $68,000 per patient.

"So, why am I doing this? To be honest it's a just a question of giving back. I wish someone could have done something for me effectively so I didn't get into this state," he says. "It's giving back to the community. ...; It was a simple thought process for me. If I can have a tiny little effect; great. ...; Get a little more funding; great. At least I can say I tried."

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