In Montana and 26 other states around the country, newborn screening samples are not processed on the weekends, creating unnecessary delays that put little lives at big risk. The Montana Public Health Laboratory is open Monday through Friday from 8:00 a.m. to 5:00 p.m., with limited hours on Saturdays. The lab is closed on Sundays. Across the country, just 10 state labs are open seven days per week.
“We do have minimal staff coverage on Saturday for the purpose of receiving and shipping specimens, reporting results and other laboratory tasks,” said Jon Ebelt, spokesman for the Montana Department of Public Health and Human Services via email. “Tests are not performed on Saturdays.”
MTPHL staff does receive and ship samples to the Wisconsin state lab on Saturdays but the courier service does not drop samples off at the lab on weekends. DPHHS has a contract with the Wisconsin State Laboratory of Hygiene to perform the majority of its newborn screening testing on specimens because the MTPHL does not have the technology. This is fairly common in smaller states with fewer births per year.
Congress unanimously approved “The Newborn Screening Saves Lives Reauthorization Act” in December 2014 — and in it — the legislation defined procedures for improving timeliness and tracking of samples aimed at eliminating delays, so that babies with deadly yet treatable disorders could be identified quickly.
This was in response to a national effort in 2012 on the part of the Milwaukee Journal Sentinel investigative team, which found that hospitals across the nation were sending newborn blood samples late to state labs. President Barack Obama signed the bill into law December 18, 2014.
Despite the Journal Sentinel’s findings and the actions of Congress, Montana’s newborn screening program is still failing to meet key performance measures of timeliness and efficiency strongly recommended by the American College of Medical Genetics and Genomics of having at least 95 percent of all newborn blood samples arrive at the state lab within three days of collection.
As part of our investigation, the Montana Center for Investigative Reporting separated out the performance of Montana’s healthcare facilities by which lab the samples were sent to. Since Montana has to send all of its samples to the MTPHL first, which then forwards a portion of them to the Wisconsin state lab, transit times take longer to reach Wisconsin.
Below are the numbers for the overall timeliness of all samples sent to the MTPHL for calendar years 2011, 2012, 2013 and 2014. MTCIR’s analysis shows how many samples were on-time, late and very late for each year. MTCIR defines on-time samples as arriving within the three-day target range adopted by DPHHS; late samples as taking four to five days to arrive; and very late samples taking six or more days to reach the lab. The data includes only facilities that DPHHS provided names for. These are facilities in the state of Montana with at least 20 births per year.
The problem here is that since the lab does not process samples on weekends, babies born on Saturday and Sunday do not receive the same standard of care as babies born during the week. And their samples are not tested as quickly, heightening the risk for a lifetime of intellectual disability, or even death, to babies who test positive for a deadly disorder requiring immediate treatment.
And with the numbers below for the overall timeliness of all samples sent to the Wisconsin state lab over the same four-year period, it only gets worse. The Wisconsin state lab also does not process samples on weekends. So while DPHHS did not provide the transit time data for samples arriving at the Wisconsin lab, state health department spokesman, Jon Ebelt, said a portion of all samples received at the in-state lab are forwarded the same day they are received via overnight delivery to Wisconsin.
Unfortunately, this is a best-case-scenario, likely producing overly optimistic numbers. MTCIR’s analysis here directly reflects DPHHS’ claims — taking the agency at its word — and simply adding one extra day to the transit time for each sample to reach the lab. Due to the extra transit time, the total number of on-time samples arriving within three days obviously decreases, while the number of late and very late samples increases.
In 2013, samples reached the MTPHL on-time with 70 percent efficiency. That number fell to 47 percent for samples delivered on-time to the lab in Wisconsin, both of which fall extremely short of achieving 95 percent efficiency recommended by ACMG.
The data indicates that in 2012 and 2013, samples sent to Wisconsin arrived late more than they arrived on-time. In 2012, 6,054 samples were late, while just 5,492 were on-time. And in 2013, 6,263 samples were late, while just 5,589 were on-time.
The performances and subsequent failures of Montana’s healthcare facilities — with regard to newborn screening — was always hidden from public view, until now. That is why MTCIR fought for almost an entire year to bring this series to light. Montana families have a right-to-know how timely hospitals, birthing centers and certified professional midwives are delivering their baby’s first and most important test to labs for screening.
If you’re a parent with a child who has had a particularly good, or bad experience, with newborn screening in Montana, we would love to hear your story. Please fill out our contact form, or send us an email to: firstname.lastname@example.org.
This story was written with support from the Fund for Investigative Journalism.