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Delays that mean death


I have inadvertently given short shrift to an investigative report I think is one of the most important I’ve seen in quite some time. It appeared in the Milwaukee Journal Sentinel last November. Last month, it won the Selden Ring, one of the investigative world’s big prizes.

The story detailed how hospitals in every state have been delaying getting blood tests on newborn babies quickly enough journal_sentinel_bannerto state labs for genetic testing that can reveal a wide range of diseases that need immediate treatment.

This idea of testing babies’ blood is not a new one. In fact, it has been in universal use in the U.S. for a half-century. But it seems there continue to be bureaucratic problems that slow it down—labs that close for the weekend to save money, hospitals which “batch” the blood tests and send them to the lab only when they have collected a certain number, or institutions which refuse to use overnight delivery or courier services, even when the state is paying the bill.

It’s the slow down that causes the problems. The blood is supposed to be drawn within 48 hours of birth, and should be tested by the lab within 48 hours. That’s a four-day window. For an astonishing number of hospitals, that’s not long enough. In some cases, it takes weeks to get the samples to the lab. And if it’s a lab that happens to close for the weekend, additional days after that until the sample is analyzed. Some labs have the unfortunate practice of informing physicians of positive tests by surface mail. That adds even more days to the delay.

What makes The Journal Sentinel’s “Deadly Delays” so powerful an investigative report is the way the data is the foundation of the story rather than the story itself. The Milwaukee reporters analyzed more than three million records, many of them obtained under Freedom of Information laws. But the story they produced is decidedly light on the data, at least in what is known as the “mainbar” or primary story, and heavy on the human element—the real stories of real people who have suffered as a result of this oversight. Since I started to get involved in what is sometimes call “computer-assisted reporting” 25 years ago, I have been preaching that the dataset is the beginning of the reporting, not the end of it.

Congratulations to the Journal Sentinel on a well-deserved award. But isn’t it time for someone else in media, or a series of someone elses distributed around the country, to take up the cause of righting a clear wrong and regularly publish, broadcast, or post every single hospital’s record with these blood tests until they’re in compliance with what we’ve known about medicine and public health for the last 50 years?