Melissa Whitaker has one very compelling reason to keep up with the health care legislation being written in Washington: her second transplanted kidney.
The story of Whitaker’s two organ donations — the first from her mother and the second from her boyfriend — sheds light on a Medicare policy that is widely regarded as pound-foolish. Although the government regularly pays US$100,000 or more for kidney transplants, it stops paying for anti-rejection drugs after only 36 months.
The health care bill moving through the House of Representatives includes a little-noticed provision that would reverse the policy, but it is not clear whether the Senate will follow suit. The 36-month limit is one of several reimbursement anomalies that many in Congress hope to cure.
Whitaker, 31, who describes herself as “kind of a nerd,” has Alport syndrome, a genetic disorder that caused kidney failure and significant hearing loss by the time she was 14. In 1997, after undergoing daily dialysis for five years, she received her first transplant. Most of the cost of the dialysis and the transplant, totaling hundreds of thousands of dollars, was absorbed by the federal Medicare program, which provides broad coverage for those with end-stage renal disease.
Federal law, however, limits Medicare reimbursement for the immunosuppressant drugs that transplant recipients must take for life, at costs of US$1,000 to US$3,000 a month.
Once Whitaker’s Medicare expired, she faced periods without work and, more important, without group health insurance, which disregards pre-existing conditions.
Struggling financially, she soon found herself skipping doses of anti-rejection drugs. By late 2003, her transplanted kidney had failed, and she returned to dialysis, covered by the government at US$9,300 a month, more than three times the cost of the pills. Then 15 months ago, Medicare paid for her second transplant — total charges, US$125,000 — and the 36-month clock began ticking again.
“If they had just paid for the pills, I’d still have my kidney,” Whitaker said. “I’d be healthy, working and paying taxes.”
Currently unemployed, Whitaker is nervous that in two years she will again find herself without health coverage.
“I’m extremely nervous about whether I’m going to be able to afford my medications once my coverage runs out,” she said.
Bills have been introduced in Congress since 2000 to lift the 36-month limit and extend coverage of immunosuppressant drugs indefinitely. They have never made it to a vote, largely because of the projected upfront cost. The Congressional Budget Office estimates that unlimited coverage would add US$100 million a year to the US$23 billion Medicare kidney program.
But the cost-benefit analysis would seem obvious. The most recent report from the US Renal Data System found that Medicare spends an average of US$17,000 a year on care for kidney transplant recipients, most of it for anti-rejection drugs. That compares with US$71,000 a year for dialysis patients and US$106,000 for a transplant.
“It doesn’t make any sense at all,” Whitaker said. “Somebody’s not looking at the numbers.”
A provision to cover the drugs is in the House health care bill, which has cleared three committees. It is uncertain whether the Senate will include it in its bill.
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