Dad’s Life or Yours? You Choose

http://www.nytimes.com/2009/10/04/opinion/04kristof.html?_r=3


By NICHOLAS D. KRISTOF
Published: October 3, 2009

So what would you do if your mom or dad, or perhaps your sister or brother, needed a kidney donation and you were the one best positioned to donate?
Fred R. Conrad/The New York Times

Most of us would worry a little and then step forward. But not so fast. Because of our dysfunctional health insurance system, a disgrace that nearly half of all members of Congress seem determined to cling to, stepping up to save a loved one can ruin your own chance of ever getting health insurance.

That wrenching trade-off is another reminder of the moral bankruptcy of our existing insurance system. It’s one more reason to pass robust reform this year.

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Mr. Waddington has polycystic kidney disease, or PKD, a genetic disorder that leads to kidney failure. First he lost one kidney, and then the other. A year ago, he was on dialysis and desperately needed a new kidney. Doctors explained that the best match — the one least likely to be rejected — would perhaps come from Travis or Michael, his two sons, then ages 29 and 27.

Travis and Michael each had a 50 percent chance of inheriting PKD. And if pre-donation testing revealed that one of them had the disorder, that brother might never be able to get health insurance. As a result, their doctors had advised not getting tested. After all, new research suggests that lack of insurance increases a working-age person’s risk of dying in any given year by 40 percent.

“At the time David needed a transplant, the people closest to him couldn’t even offer a lifesaving donation — for insurance reasons,” said Mr. Waddington’s wife, Susan.

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But our insurance system has had other excruciating consequences for the Waddingtons. Though PKD has no cure as such, there are experimental medications that may delay kidney problems. To get access to the medications, a patient must be tested — and since Travis and Michael Waddington don’t dare get tested, they don’t have access to these medications.

“The only way to do it is to lie about your name during testing, to use a fictitious name,” Susan Waddington said. “That was the advice we got from a major person in the field. We didn’t do that.”

The Genetic Information Nondiscrimination Act, passed last year, should eventually help people get access to health insurance even if they have a genetic predisposition to a disease. But insurance companies will still be free to discriminate against people who show symptoms of those diseases.

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The broader problem is this: Our broken system leads Americans to spend 16 percent of our national income on health care, twice as much as in parts of Europe, yet with maternal mortality rates and child mortality rates twice those of the best-performing countries. Lack of insurance is linked to nearly 45,000 unnecessary deaths a year, according to a peer-reviewed study to be published in the December issue of The American Journal of Public Health.