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In state, 13% of babies’ samples hit goal

by Andy Davis | November 24, 2013 at 4:53 a.m.

Out of the more than 36,000 blood samples collected from newborn babies in Arkansas during the state’s past fiscal year, only 13 percent made it to the state Department of Health’s laboratory within the department’s target time span of 48 hours, a department spokesman said last week.

That was an improvement from the fiscal year that ended June 30, 2011, when only 8 percent of the samples arrived at the Little Rock laboratory within 48 hours, Health Department spokesman Ed Barham said.

The department’s goal is for at least 75 percent of samples to arrive at the laboratory within the two-day window, Barham said.

“We try to get better every year, and we’d love to get to 100 percent,” Barham said.

A 2005 report by the American College of Medical Genetics recommended that newborn screening samples be submitted for analysis within three days of collection and that the results be available no later than two days after that - a total turnaround time of less than five days.

The testing is done by pricking the heel of a baby and collecting drops of blood on a piece of filter paper. The paper is then sent to the Health Department’s laboratory in Little Rock, where the blood is tested for 28 disorders.

In the state’s fiscal year that ended last June 30, 80 babies were diagnosed with genetic disorders as a result of the tests.

In some cases, early diagnosis of a disorder can allow treatment to start in time to save a baby’s life or prevent permanent health damage, said Patricia Scott, manager of the Health Department’s newborn screening program.

“Some of these disorders can have almost immediate impact, like within the first week of life,” Scott said. “Sometimes you have a little bit longer, but the more rapidly you can get these babies treated, the better off you’re going to be.”

Early diagnosis made a difference for Holly Johnson’s daughter, Sarah, who was diagnosed with phenylketonuria when she was 10 days old.

Also known as PKU, the disorder prevents the body from being able to fully break down an essential amino acid, called phenylalanine, that is found in breast milk and most foods. As a result, phenylalanine builds up in the body and becomes a toxin that can damage the brain.

Immediately after the diagnosis was confirmed at Arkansas Children’s Hospital, Johnson’s daughter was put on a special formula.

Now 18, Sarah Johnson is a student at the University of Arkansas at Little Rock, having graduated last year from the Arkansas School for Mathematics, Sciences and the Arts in Hot Springs with 31 hours of college credit.

“It’s really amazing, the difference in what my daughter could have been, had she not been screened,” Holly Johnson said.

State Board of Health regulations say hospitals should collect blood samples from newborns 24 to 72 hours after birth and submit the samples to the laboratory within 48 hours of collection.

A sample is considered “submitted” if it’s in the mail within 48 hours or delivered to a county health unit, rather than to the Little Rock laboratory.

Barham said the Health Department’s goal - having the samples arrive at the laboratory within 48 hours of collection - is higher than what the regulation requires.

To improve delivery times, two years ago the department started a courier service that delivers samples from county health units to the Little Rock laboratory at no charge to the hospitals.

The Health Department also discourages hospitals from “batching” - collecting multiple days’ worth of samples before delivering them.

“We want hospitals to handle those individually and get them straight away to us as quickly as they possibly can,” Barham said. “That’s the gold standard that we would hold up that we want everyone to follow.”

Yet some hospitals continue to batch samples, and only about half use the courier service, Barham said. Other hospitals use FedEx, UPS or the U.S. Postal Service.

Washington Regional Medical Center in Fayetteville delivers samples to the nearby county health unit only on Mondays, Wednesdays and Fridays, spokesman Gina Maddox said.

The hospital’s goal is for the samples to arrive at the Little Rock laboratory within seven days, a goal that it met 93 percent of the time in 2012, she said.

In an email, the hospital’s laboratory director, Kathy Miller, said the seven-day goal was provided by the Health Department during a recent visit, during which the hospital was “not encouraged to change anything in our process.”

“We were actually congratulated by the Health Department for our process,”Miller said. She said the hospital would send samples daily if the Health Department recommended that, adding that its current system does ensure that samples arrive at the county health unit within 48 hours during the week.

The department laboratory and county health units are not open on Saturdays or Sundays, and the courier service doesn’t operate on those days.

Barham said he didn’t have the details Friday on what Health Department inspectors told Washington Regional.

“Our really strong preference is that hospitals don’t batch their tests and that they make every effort to get them to the health unit so that we can turn them around quickly,” Barham said.

The department has explored operating the laboratory on weekends to improve testing times, Barham said, but he noted that the situation is complicated by the fact that the health units aren’t open on those days.

“It would be a serious move from a lot of different standpoints” to provide testing every day of the week, he said.

Of other hospitals that responded to inquiries from the Arkansas Democrat-Gazette last week, UAMS Medical Center and St. Vincent Infirmary Medical Center, both in Little Rock, and St. Bernards Medical Center in Jonesboro each said their samples are delivered to the Health Department daily, Monday through Friday, either by hospital personnel or the Health Department courier.

Mark Lowman, a spokesman for Baptist Health Medical Center-Little Rock, said he didn’t have information Friday about the hospital’s procedures.

Barham declined to provide information on individual hospitals’ performances. He cited Arkansas Code 20-9-221, which prohibits the department’s Division of Health Facilities Services from releasing information identifying “individuals or institutions except in a proceeding involving the question of licensing or revocation of a license.”

Barham said the Health Department strives to follow state Board of Health regulations, which say the laboratory should analyze samples within five working days of receiving them and any abnormal result should be communicated to the hospital within two working days after the analysis is performed - a turnaround time of seven days.

Barham said the extra two days is required to confirm abnormal results.

The five-day span for completing the initial test is based on “the volume and our capacity and what it takes to get the job done,” including one test that takes an entire day for a machine to run.

From November 2012 through the end of October, more than 99 percent of the samples submitted were analyzed within five business days, he said.

From April through June of this year, he added, 90 percent of samples were analyzed within 36 hours, and all the samples were tested within five business days.

In Florida, the screening lab in Jacksonville typically analyzes samples within 24 hours of receiving them, said R. Rodney Howell, a professor of pediatrics at the University of Miami who specializes in newborn genetic disorders.

He called the American College of Medical Genetics recommendation of a five-day total turnaround “do-able and certainly a very sound goal, without question.”

He added that all hospitals should examine their procedures for submitting samples to make sure they are not causing delays.

“It’s an absolutely great program, but we need to make sure that every hospital is collecting and getting the samples in early,” Howell said. “These are very important tests that save babies’ lives.”

Front Section, Pages 1 on 11/24/2013

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