A fight for newborn screening data across the country

By Ellen Gabler

Since June, the Milwaukee Journal Sentinel has been fighting for important data that affects babies born in every state and the District of Columbia.

Data we’ve received so far was the backbone to this investigation into delays in the nation’s newborn screening programs and other related stories. But about two dozen states and the District of Columbia won’t release meaningful information. (Check our interactive to see which states are in the doghouse.) 

Here’s why it matters: Nearly every baby born in the U.S. has blood collected shortly after birth to screen for rare but deadly genetic disorders. The blood is collected on a card that is supposed to be sent within 24 hours to a lab for testing.

But we found that thousands of hospitals throughout the country are late sending the blood samples for these life-saving tests. Delays can be catastrophic for a child with one of the disorders, resulting in serious medical issues, brain damage and even death.

Here’s why you might care:  Twenty-four states refused to release data about how hospitals perform. So parents in those states have no idea what is happening at the hospital where their baby will be born.

Our investigation found that some hospitals and states are especially bad at sending samples promptly. Many hospital officials didn’t even know their facility had a poor record and pledged to make changes immediately when we alerted them to the problem.

Our analysis was based on nearly 3 million blood tests from across the country. Yet states including Colorado, Tennessee, Arkansas, Virginia and New Jersey won’t release the data. That’s even as dozens of states throughout the country are making significant changes to their newborn screening programs, including some of the states that won’t release the data!

What you can do now, or for future health-related stories: Several news outlets have done a great job localizing the story and holding accountable hospitals and public health labs in their own states. (Albany Times Union, Arizona Republic, Rochester Democrat & Chronicle, and the Salt Lake Tribune to name a few.)

But we still have no idea what’s going on in dozens of states and the District of Columbia. (A few states have said they will release their data soon or are working on it.)

Reporters in the states holding out can push health officials to release the information which is crucial to the health of newborn babies. We have contact information for lab and health officials in each state.

A warning: They’ve got a lot of excuses (which they probably use for other health-related investigations too.) Don’t buy ‘em.

Most states  were very hesitant at first to release information with hospital names. They said it would be adversarial to hospitals or might reveal their business practices.

Many cited patient privacy, even though children's names and outcomes of tests were not requested. They said that releasing data would violate HIPAA (Health Insurance Portability and Accountability Act), a common excuse used with health-related records. While HIPAA is relevant in some situations, it is grossly overused and reporters must fight back.

One state said releasing the name of a hospital and the total number of babies born at that hospital would allow me to identity individuals, a violation of HIPAA, they said. I went to that health department’s site and looked at health statistics the agency regularly publishes. In an email I politely explained that it seemed strange they would withhold the information I was seeking while they frequently publish the number of individuals within small Indian Tribes who are diagnosed with specific sexually transmitted infections. I got the data a few days later. 

In other states, health officials offered to provide data that was essentially useless. For example, several said they would release the average time it took hospitals to send babies’ blood samples. That obscures outliers and makes it impossible to see the number of kids who might be in danger.

Other antics included:
Florida officials were posting monthly reports of hospitals’ newborn screening performance on their health department Web site. We downloaded the reports, scraped the data from the PDFs and compiled annual totals after officials refused to fulfill a records request for the data.

Just a few days later, Florida removed several years of the reports from their site (don’t worry - we had them saved.) They also said that all their data “might” be wrong. (It’s not.)

Officials in West Virginia promised for several months that the (electronic) data I had requested was on the way. Then one day I received a stack of paper records in the mail with all hospital names redacted. The information was essentially worthless, plus the health department had only sent data for babies’ samples that took an exceptionally long time to get to the lab.

Read the entire Deadly Delays series.

Ellen Gabler is an investigative reporter and assistant editor at the Milwaukee Journal Sentinel. egabler@journalsentinel.com and Twitter: @egabler