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The U.S. House of Representatives passed a bill Tuesday that requires experts to systematically track and improve the timeliness of newborn screening programs nationwide.

The legislation, which passed the U.S. Senate in January, aims to eliminate delays in newborn screening so babies with deadly yet treatable genetic disorders are diagnosed quickly.

Both the House and Senate added timeliness measures to the Newborn Screening Saves Lives Reauthorization Act after a Milwaukee Journal Sentinel investigation in November found that thousands of hospitals were sending babies' blood samples late to state labs. The legislation, however, does not require public reporting of hospitals' and states' performance, leaving that up to each state.

Nearly every baby in the country is tested for genetic disorders shortly after birth, yet the testing is often not done in a timely manner. Infants have died and suffered permanent disabilities because of screening delays by hospitals and state labs, nearly half of which aren't open on weekends or holidays.

The bill, which involves $19.9 million in spending, reauthorizes a 2008 measure that funds programs supporting the country's state-run newborn screening systems. The Journal Sentinel found that newborn screening varies widely in quality depending on the state or hospital where a child is born.

In Texas, about 50,000 blood samples from babies — or 15% — arrived late at labs for testing in 2012. In Iowa, only 67 samples, or 0.18%, took five or more days to reach the lab.

Hospitals and state health programs throughout the country have been working to fix delays in their newborn screening programs since the Journal Sentinel investigation was published.

Arizona — one of the poorest performing states identified by the Journal Sentinel — has improved its turn-around time for getting blood samples to the state lab by nearly 30 percentage points in the past year.

"You just need some direction and some initiative," said Will Humble, director of Arizona's Department of Health Services.

After finding out about Arizona's poor performance from the Journal Sentinel, Humble pledged to have 95% of samples arrive at the state lab within three days of collection. By May, 96% of babies' blood samples in Arizona met that mark, compared with 67% the year before.

Reforms added to bill

Throughout the country, nearly every baby has their heel pricked a day or two after birth. Blood is collected on a card that is supposed to be sent quickly to a lab for testing. The entire premise of newborn screening is to detect disorders quickly so babies can be treated early, averting death and preventing or limiting brain damage, disability and a lifetime of costly medical care.

The Journal Sentinel analyzed nearly 3 million newborn screening tests from 31 states and found that hundreds of thousands of blood samples from newborn babies arrived late at labs. In some cases, the cards were held and "batched" to save a few dollars in postage — putting babies at risk of disability and death.

The investigation also found that many state and hospital officials were unaware of the problems with newborn screening in their own health departments or hospitals. Several states said they did not keep track of how quickly hospitals were sending newborn screening samples; others refused to provide data to the Journal Sentinel.

Both the House and Senate bills specified for the first time that timeliness of newborn screening systems should be evaluated — something that has never been done on a national level and is not done at all in some states.

Other reforms added to the bill include:

■ Requiring that the Government Accountability Office, the investigative arm of Congress, prepare a report within two years that examines the timeliness of newborn screening throughout the country, while also summarizing guidelines, recommendations and best practices to support a timely newborn screening system.

■ Clarifying that the role of the U.S. Centers for Disease Control and Prevention in newborn screening includes evaluating laboratory quality and surveillance activities, with a focus on timeliness, so state labs collect and share standardized data.

■ Directing a committee of experts that advises the U.S. Health And Human Services secretary to provide recommendations on improving timeliness within newborn screening programs.

Joseph Bocchini, a physician who chairs the federal committee of experts, said he was pleased to hear about the legislation and expects his group to have recommendations for the health secretary by September. The committee is working with other organizations, including the March of Dimes and the Association of Public Health Laboratories.

None of the quality improvement programs supported by the legislation so far has moved to make public the track record of states or hospitals. The Newborn Screening Saves Lives Reauthorization Act includes provisions for gathering data from state newborn screening programs so improvements can be made. Yet participation by state programs remains voluntary, and much of the meaningful data won't be made available to the public.

The bill passed on a voice vote Tuesday evening after short testimony from its sponsor, U.S. Rep. Lucille Roybal-Allard (D-Calif.) and a few others.

The bill now returns to the Senate, before it would be sent to President Barack Obama.

In June 2013, the Journal Sentinel requested newborn screening data from every U.S. state and the District of Columbia. Twenty-four states and Washington, D.C., would not release information identifying hospital names. Many cited patient privacy, even though children's names and outcomes of tests were not requested. Other states said releasing such information would be adversarial to hospitals or might reveal their business practices.

Since the initial investigation, the Journal Sentinel has received data from four additional states, finding even more severe problems. Twenty states and the District of Columbia still refuse to make the data public, leaving parents with no way of knowing how well newborn screening is being performed.

In states that did release the information, many hospital and state health officials immediately thanked the news organization for bringing the issue to their attention.

Often the fixes were simple: tweaking the courier service schedule that picks up blood samples at hospitals; making sure hospitals send samples directly to a state lab instead of sending them first to a central location within a hospital chain; changing hospital procedures to stop holding samples for days to send in groups.

Dozens of states, including Wisconsin, have made significant changes to address delays, such as identifying problem hospitals and providing them with regular performance reports, adding courier services from hospitals and keeping labs open on weekends.

Humble, the health department director from Arizona, said publicly posting hospitals' performance online has provided incentive for hospital administrators to pay attention to this issue. The health department also plans to print certificates for well-performing hospitals to hang in their waiting room for parents to see.