IMAGINE YOU ARE HOOKED UP to a machine three times a week for hours at a time. The machine extracts deadly bodily toxins from your blood that your kidneys can no longer clear themselves. You come back from these dialysis sessions exhausted and depressed; meanwhile, dialysis itself takes a toll on your heart and generally shortens your lifespan.
This is the life of Lisa Cunningham, a 40-year-old mother and former social worker who lives outside of Boston. Her kidney failure was caused by Type 1 diabetes that she's had for years. Her only hope for better health and the semblance of a normal life is a kidney transplant. Until then she must continue to wait on the national list--which pairs deceased (cadaver) donors with potential transplant recipients--for at least five more years, because the demand for organs far outstrips supply. Lisa tells me her doctor says she might not live five years.
Many people in this position turn to living donors. Such donation is possible because people have two kidneys, and a healthy person can lead a normal life with a single good one. Lisa turned to relatives, but they too had diabetes or wanted to preserve their kidneys in case their children developed it. She was desperate.
So when Rob Haneisen, a reporter at the MetroWest Daily News in Framingham, Mass., who has written about people in situations like hers, asked Lisa if he could interview her for a story, she jumped. Perhaps former colleagues, long lost friends, or a Good Samaritan would
read about her and volunteer to donate. Lisa had even begun coordinating with Beth Israel Deaconess Medical Center to prepare for a transplant, should a donor come forward as a result of the News article that ran on April 16.
Enter Dr. Douglas Hanto, head of the transplant division at Beth Israel. He had heard about Lisa's circumstance when Haneisen called him for an interview as part of the story. Before speaking to the reporter, Hanto had his staff phone Lisa right away to deliver shocking news: Beth Israel would flatly refuse to do her transplant if the only donor she could find was a kind-hearted stranger who responded to the article.
"We are in favor of donors coming forward and donating to the next person on the waiting list," Hanto told Haneisen. And how many have done that so far over the years, the reporter asked? "Just a couple," Hanto admitted. Also puzzling is Hanto's assertion: "We have hundreds of people on the waiting list. If we support some favored status for one patient, how can we really say we are being fair and looking out for all our patients?"
The fact is that Lisa harms nobody if a stranger responds to her story and comes to her aid. In fact, she helps people on the list because she is taken out of the cadaver-waiting queue and others can move up.
The real story here is the sorry state of the waiting list, maintained by the nonprofit United Network for Organ Sharing (UNOS) under a monopoly contract with the Department of Health and Human Services. About 92,000 Americans are on the list, most waiting for kidneys, yet only one-fourth will receive transplants within the next year. Eighteen people die every day because they have not found a donor in time.
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