Transplant patient, like others, kicked off Medicare

May 10, 2008

Transplant patient, like others, kicked off Medicare

Jane Lerner
The Journal News

MONSEY -Brocha Dov last month celebrated the third anniversary of the kidney transplant that freed her from the grueling regime of dialysis three times a week and gave her life back to her.

But just days later, she got a letter that she fears threatened to take away the very life that the transplanted organ has allowed her to enjoy.

The letter from the federal Centers for Medicare and Medicaid informed her that now that she had reached the third anniversary of her transplant, she was no longer eligible for insurance.

"I take 48 pills every day," she said. "How can I pay for that? I can't."

Dov, 63, has to wait 13 months before she turns 65 and qualifies for Medicare, the federal health insurance program for the elderly.

Now she is among an estimated 60,000 people nationwide who have kidney transplants -paid for by Medicare -who are then cut off from the program with few options for continuing care.

"If she goes a year without the medication, she'll lose the kidney, and then she'll have to go on dialysis again," said her husband, Nachman Dov, a retired garment district worker. "That will cost the government more than $200,000 a year. What sense does that make?"

None, says Paul Precht, spokesman for the Medicare Rights Center, a nationwide advocacy group.

"It's an irrational policy," he said. "Just another symptom of a fractured and irrational health care system."

Brocha Dov, like everyone who needs dialysis, automatically qualified for Medicare to enable her to pay for the lifesaving, and expensive, treatment. It cost $200,000 for a year of dialysis.

When she was lucky enough to get a donated organ a year later, the federal program also paid the estimated $200,000 cost of the transplant and the estimated $25,000 yearly since for anti-rejection drugs and other medication.

"The transplant, it was like a miracle," said Dov, who has five children, 38 grandchildren and seven great-grandchildren. "I don't even want to think about what would happen if I lost it."

She has looked into Medicaid, a program for the poor and sick, but was told that she wouldn't qualify.

Many kidney transplant patients find themselves in the same limbo.

"It's enough to make you want to bang your head on the wall," said New Rochelle resident Jeff Graham, former president of the Westchester Transplant Support Organization, an education and advocacy group.

He has fielded many telephone calls over the years from people in the same situation as Dov.

"Unfortunately, there are no good answers," said Graham, who received a donated liver 11 years ago.

The National Kidney Foundation has been lobbying for years to get lifelong Medicare coverage for people who have had kidney transplants. So far, the organization has succeeded only in winning an extension from one year to three years after transplantation.

"The situation as it currently stands is tragic," said Jayne Mardock, the National Kidney Foundation's congressional relations director.

An estimated 125,000 people have kidney transplants every year. Half of them are already over 65 and already qualify for Medicare.

The other half, more than 60,000 people nationwide - including Dov -have Medicare to pay their continuing drug and doctor costs for three years.

"After that, they're on their own," Mardock said.

Some people, mainly those who are younger and otherwise healthy, are able to return to work and get private insurance.

At Westchester Medical Center in Valhalla, which performs an average of 110 kidney transplants each year - among the busiest programs in the state - patients are told to prepare for the three-year Medicare cutoff.

"Many people become so nervous as their third anniversary approaches that they start doing foolish things - like discontinuing some of their medications," said Dr. Khalid Butt, chief of kidney transplantation at Westchester Medical Center. "Then they run the danger of losing the kidney."

The medical center works with patients facing the loss of coverage to try to switch them to less expensive medications and to see if they qualify for free medicine from pharmaceutical companies and other sources.

"We do all the tricks that can safely be done," Butt said. "But it's still a terrible, terrible situation."

Advocates don't anticipate any quick fixes from Washington.

Lawmakers across the nation have supported proposals to change the rules, but none has been successful.

"No one really opposes a change to the rules on the merits of the argument," said Mardock. "It just doesn't advance because it's not a high-priority issue."

Some of the transplant recipients, especially the younger patients, are able to return to work and get private insurance.

But many others have the same dilemma as Dov: They are too sick or old to qualify for private insurance, yet too young for Medicare.

"It's penny-wise and pound-foolish policy," said Pearl Lewis, who runs a Maryland-based group called the Kidney Advocate. "It's totally illogical -it ends up costing the taxpayer more money and ruins the lives of people who have had transplants."

Lewis helps people nationwide who find themselves with no way to pay for anti-rejection drugs and other medication after a kidney transplant.

Many pharmaceutical companies offer low-cost or free drugs for transplant patients who have no health insurance.

Lewis helps steer people toward resources that can help.

"You have to make a lot of phone calls, get on the Internet, really figure it out," she said. "It's hit or miss. Sometimes you can get the medications and sometimes you can't."

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