Kidney-transplant patient seeks new chance

For more than six years, Jessica Harder was a model kidney-transplant patient. She surfed, competed in swimming competitions, worked as a lifeguard and managed to graduate from high school before turning 16.

But her donated kidney, which she received when she was 12, wasn’t as tough as she was.

It gave out 16 months ago for reasons Harder thinks are linked to a short-sighted government policy. Simply put, although 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 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 once they turn 18.

Less than a year after her 18th birthday, “the transplant I had shriveled up,” said Harder, 20, who is jobless and on disability. “I have had zero kidney function since October 2006. I’m living on dialysis.”

That means three days a week, three hours at a time, in a dialysis center. She doesn’t have to worry about those costs; Medicare pays for dialysis indefinitely, at an average annual cost per kidney patient of nearly $70,000.

The average annual cost for anti-rejection drugs for a kidney-transplant patient: about $15,000.

With a kidney transplant -- including the surgery, which typically costs about $100,000 -- “the break-even point for Medicare is three years. Once a [kidney] transplant lasts three years, it’s a cost-saver,” said Troy Zimmerman, vice president for government relations with the National Kidney Foundation.

The average kidney transplant lasts seven to eight years, Zimmerman 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% of those failures are due to the cost of anti-rejection drugs.

Rich Salick, a former professional surfer who is director of community relations for the National Kidney Foundation of Florida, had two transplanted kidneys that lasted 13 years each. He’s now eight years into his third donated kidney.

Transplants are not only less costly in the long run than dialysis, Salick said, 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 anymore.”

He has known Harder since she was a child. “She’s an example for so many people. I talk about her when I give seminars,” said Salick, 58.

He said that Harder, a half-inch shy of 5 feet, has had multiple medical problems throughout her life involving her heart, liver and vascular system. Last year, she suffered a massive stroke.

“I’ve never heard her complain, even when she was recovering from the stroke,” he said.

But she did complain recently after receiving 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 sufficient funds to cover the deductible and co-payments that come with a transplant.

“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 strongly advocates legislation that would 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.”

As a transplant patient, Harder was healthy despite her various chronic conditions. Dialysis is particularly tough on her heart -- she’d had two open-heart surgeries by age 3 -- but she’s working to get back on the hospital’s list to receive another kidney. An avid video gamer, she’s organizing an Xbox tournament to raise the funds she needs.

Salick expects Harder not to have a long wait for a new kidney once she has raised a few thousand dollars. “She is a compliant, exemplary patient,” he said.

Although the average wait nationwide for a kidney is two to five years, and nearly 60,000 Americans are in line, wait times in central Florida are usually less than a year, he said.

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

The issue isn’t going away any time soon, Zimmerman said, despite the recent announcement of a new technique that could free kidney-transplant patients from having to use anti-rejection drugs.

The technique, which combines a bone-marrow transplant with a kidney transplant, shows great promise, Zimmerman said. But it’s a preliminary finding based on an experiment with just five patients.

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.”