Medicare drug policy puts many a kidney patient's life on hold

Medicare drug policy puts many a kidney patient's life on hold

By HARRY WESSEL
Orlando Sentinel

February 17, 2008

For more than six years, Jessica Harder was a model kidney-transplant patient. She surfed, swam competitively, worked as a lifeguard and graduated from high school before turning 16.

But the donated kidney she received when she was 12 wasn't as tough.

It gave out 16 months ago, for reasons Harder thinks are linked to a government policy. Simply put, while Medicare — which covers most people with end-state renal disease — pays for a kidney transplant, it limits the amount of time it pays for the drugs needed to keep the transplanted kidney functioning.

For most adult kidney recipients younger than age 65, Medicare pays for anti-rejection drugs for three years. Medicare does not have a three-year limit for minors, but those who have had coverage for at least three years lose it when they turn 18.

Less than a year after her 18th birthday, "the transplant I had shriveled up," said Harder. "I'm living on dialysis."

That means the 20-year-old Palm Bay resident spends three hours a day, three days a week at a dialysis center. Harder lives on monthly disability checks and doesn't have to worry about the cost of dialysis. Medicare pays for that indefinitely, at an average annual cost of nearly $70,000.

If she were to have another transplant, the surgery would cost about $100,000. The average annual cost of anti-rejection drugs: about $15,000.

"The break-even point for Medicare is three years," said Troy Zimmerman, vice president for government relations with the National Kidney Foundation. "Once a kidney transplant lasts three years, it's a cost-saver."

The average kidney transplant lasts seven to eight years, he said, and many last longer than that.

Zimmerman cited a Congressional Budget Office estimate that 3,000 transplanted kidneys fail each year — and about 12 percent of those organs fail because the recipients can't afford anti-rejection drugs.

A harsh reality
Rich Salick is a one-time professional surfer and now director of community relations for the National Kidney Foundation of Florida. His first two transplanted kidneys each lasted 13 years. He's now eight years into his third donated kidney.

Transplants are not only less costly in the long-run than dialysis, Salick said, but they also offer a much higher quality of life.

"I deal with 20 to 25 people a year who we have to talk off the ledge" of suicide, he said. "They can't take dialysis any more."

He has known Harder since she was a little girl. "She's an example for so many people. I talk about her when I give seminars," said Salick, 58.

Harder has had medical problems throughout her life involving her heart, liver and vascular system. She suffered a massive stroke last year.

"I've never heard her complain, even when she was recovering from the stroke," Salick said.

That changed after she received a letter from the Florida Hospital Transplant Center informing her that she was being removed from its kidney-recipient waiting list.

The letter stated that she did not have enough money to cover the deductible and co-payments.

"Transplant programs are forced to make very difficult decisions during the patient selection process," Florida Hospital officials explained in a written statement. Successful transplants require an ability to cover "the costly care for the transplanted organ long term," which includes "expensive anti-rejection medications daily for the life of the transplant."

Such financial criteria are typical for transplant centers, said Zimmerman, of the Kidney Foundation. It's another reason his group advocates legislation to continue Medicare coverage of anti-rejection drugs for as long as the transplanted kidney lasts.

"You still have compromised kidney function with a transplant, but you're better off than with dialysis," Zimmerman said. "A lot of transplant recipients can return to work; with dialysis, you're still chronically ill."

Hope for the future
As a transplant patient, Harder was healthy despite her chronic conditions. Dialysis is particularly tough on her heart — she had two open-heart surgeries by age 3 — but she's working to get back on the hospital's list for another kidney. An avid video gamer, she's organizing an X-box tournament to raise money.

Salick doesn't think Harder will have to wait long for a kidney, once she raises a few thousand dollars. "She is a compliant, exemplary patient," he said.

Nationwide, the average wait for a kidney is two to five years. In Central Florida, the wait is usually less than a year, he said. Nearly 60,000 Americans are waiting.

In the meantime, Salick hopes to use Harder in upcoming appeals in both Tallahassee and Washington, D.C., to make the case for long-term government coverage of anti-rejection drugs.

The issue isn't going away any time soon, Zimmerman said.

A new technique that could free kidney-transplant patients from having to use anti-rejection drugs was announced recently and shows great promise, Zimmerman said.

The technique combines a bone-marrow transplant with a kidney transplant, Zimmerman said. But it's based on an experiment with only five kidney recipients.

For the foreseeable future, he said, having Medicare extend coverage for anti-rejection drugs means "you'd save money, and it's good social policy."

The Orlando Sentinel is a Tribune Co. newspaper.

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