Nancy Barnes: The complicated realm of organ donation

  • Article by: Nancy Barnes
  • Star Tribune editor
  • September 26, 2009 - 4:35 PM

Imagine being so ill that you have become a prisoner to a dialysis machine, knowing you will die without a new kidney to clean toxins from your body.

Now imagine that before you can even consider a transplant operation, you need to ask your friends, family, work colleagues and perhaps utter strangers if they will give you a part of their body. You are looking for someone who is a biological match, and who has the time, money and generosity of spirit to give you such an intimate piece of themselves. It is a hunt far more difficult than the search for the proverbial needle in the haystack.

That is the system in our country, today, for managing organ donations from living donors to critically ill patients. The demand for kidneys is exploding, far outstripping the supply of organs from deceased donors. But unlike the scrupulously ethical system that allocates organs from deceased donors, the world of live organ donations is ungoverned. It's a world where those with money and connections have a better chance of finding a donor than do those of lesser means or ability. Kidney transplant centers have to decide the ethics of who is eligible to donate on a center-by-center, case-by-case basis.

This is the story that reporter Josephine Marcotty brings to you over several days this week in a poignant yet unvarnished look at a public health crisis that costs the nation more than $30 billion a year. She brings us this story through the eyes of Melissa Larson, who is on the hunt for a kidney. A 40-year-old single mother, Larson opened herself up to Marcotty and showed her the prison her life has become as she has searched the country, futilely, for a perfect match. At one point, she resorted to posting fliers the way I might hunt for a baby sitter.

Marcotty, a member of our health care reporting team, became interested in examining the unregulated world of live organ donation as the debate over whether people should be allowed to sell their organs has flared occasionally. She wanted to understand and explore the problems driving that discussion, even though she doesn't believe organs will ever be allowed to be sold in this country.

Patients "have to go up to strangers and say, 'Will you give me a part of your body?'" she said. "That part, seemed to me, to be outrageous."

During her reporting, she discovered how little is really known about what happens outside the hospital between patients and donors. She also discovered the many flaws that exist in an anarchic system -- for instance, patients have found donors who are willing to give but who are unable to afford the travel or the time off work. "This," Marcotty said, "is a perfect example of how we could be doing a better job of managing the costs we spend on health care," because the cost of caring for a patient on dialysis far outstrips the costs of reimbursing someone's travel or time off work.

At the extremes, the situation is even worse. An international black market for body parts has developed, with unscrupulous brokers and doctors willing to perform a transplant, for a price.

In a story on Monday, Marcotty illustrates vividly the delicate dance that goes on inside a kidney transplant center as health care professionals try to walk a very gray ethical line, balancing the needs of ill patients with the risks to healthy donors willing to give up an organ. From center to center, that line can look very different.

On Tuesday, her reporting shows us the tremendous promise and challenges that a national kidney exchange holds for easing a small part of imbalance between the supply and demand of kidneys.

When reporters spend as much time on a story as Marcotty did on this one, they hope that some good will come from their work. In this case, Marcotty said, she hopes that more attention is paid to the promise and brilliance of the national kidney exchanges, or even to the small measures that could be taken to make it easier for someone to donate an organ should they so choose.

"I just kept thinking," she said, "that there has got to be a better way."

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