Joe Karan doesn't look sick. He stands 6 feet 3 inches tall, weighs 230 pounds and travels via motorcycle.
Appearances are deceiving. Karan, 60, is unable to work a full day and gave up a career in corporate training. Likewise for golf. Eight holes and he is wiped out. A walk around the block of his Land O'Lakes neighborhood leaves him out of breath.
Kidney disease zaps him of his strength. So, Karan sticks two needles into his left forearm, plugs himself into the home dialysis equipment and spends three and a half hours letting a machine do what his kidney won't — take waste and excess water from his bloodstream. This has been his five-day-a-week routine for the past three years.
Karan is on a list for a kidney transplant, but he is in no hurry. You think he would be. More than 4,500 kidney patients die each year waiting for an organ transplant, according to 2008 statistics from the National Kidney Foundation. Karan is one of more than 89,000 people on the waiting list. Karan's own adult children would be likely candidates to donate, but Karan refuses to consider such a gift.
There is no sense in accepting an organ, he said, that will start to malfunction and need replacing in just three years. That is the Catch-22 of Medicare rules for people younger than 65. The publicly funded health plan terminates coverage for transplant patients' anti-rejection drugs after 36 months even though the daily drug therapy is a lifetime requirement. Yet, if the organ does fail, Medicare will pay for continued dialysis and another transplant.
The economics are ridiculous. Drug treatments carry a $19,000 annual expense for a transplant patient. Dialysis costs more than $77,000 a year. In other words, cutting off the anti-rejection (immunosuppressive) drugs translates to a potential annual additional expense to the taxpayers of nearly $50,000 per patient. And, that's not counting the $110,000 cost of the transplant surgery.
No wonder we're deficit-spenders. Medicare pays for dialysis for more than a half-million people diagnosed with end-stage renal disease and finances more than half the approximately 17,000 kidney transplants performed annually.
Eleven years ago, Congress approved lifetime coverage of the anti-rejection drugs for the elderly and disabled. In July, U.S. Sen. Richard Durbin, D-Ill., introduced S. 1454 to try to rectify the inequity and provide the same coverage for people younger than 65. It has nine co-sponsors, including two Republicans. A similar bill is to be considered in the House.
Karan, it turns out, is now one of the leading advocates. He was in Washington, D.C., two weeks ago to lobby Florida's U.S. senators, Marco Rubio and Bill Nelson. Last week, he made his pitch to U.S. Rep. Rich Nugent, R-Brooksville. He writes letters and talks to the public.
"They say it's a no-brainer,'' says Karan, "but if it's such a no-brainer, why has it been sitting there all this time.''
It is a new role for Karan, who admitted little previous political activity. "I'm not one with a lot of public faith in a lot of public officials,'' he said. His activism had been limited to health issues —breast cancer awareness because he lost his wife to the disease two years ago and volunteering for the March of Dimes after a friend's child was born deaf.
When his adult son moved out recently, he turned an empty bedroom into a dialysis room for his treatment. He watches television. Works on the computer. And, advocates through the National Kidney Foundation on behalf of people like himself. People can't act, he said, until you tell them how big of a deal this is. "Big'' is the operative word. The savings could be billions of dollars annually.
"You tell people the math and they think you're insane,'' said Karan.
But it goes beyond dollars and cents. Consider the emotional toll on living donors and on the families of people whose organs are cultivated at the time of death. How do you think they feel when a perfectly good kidney goes haywire after just three years because the recipient couldn't afford the drugs to keep his body from rejecting the organ?
Then there is the recipient. All that good feeling turned out to be temporary, done in by incomprehensible federal rules that penalize the patient who is younger than 65.
"You have the euphoria of getting a new lease on life,'' said Karan, "and then you find out it really is just a lease.''