State officials have until Monday to apply for a new federal grant designed to improve the timeliness of newborn screening programs and to track performance of individual states. Although summary data will be made public through the federally funded program, the performance of specific states will not, even though public knowledge of poor performance has sparked huge improvements across the country.
The $5.4 million grant was established after a Milwaukee Journal Sentinel investigation nearly two years ago found that thousands of babies' blood samples throughout the country were arriving late at state labs. Infants have died and suffered brain damage and other permanent disabilities because of screening delays by hospitals and state labs, nearly half of which were closed on weekends.
Babies are tested for genetic disorders shortly after birth. Blood from a heel prick is collected on a card that is sent to the state public health labs for testing.
In the past two years, 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.
The Journal Sentinel built an interactive database that showed the performance of 26 states where health officials released data for specific hospitals. This allowed expecting parents to see how quickly each hospital was getting samples to the state lab.
When Aurora Health Care, Wisconsin's largest hospital system, was shown its performance, company executives said they had never seen the data before and vowed to solve the problem immediately. They found a bottleneck in their system and fixed it within days. Now nearly all infant screening tests from Aurora hospitals arrive at the state lab within four days, which is how Wisconsin measures and reports its data.
Federal guidelines recommend that blood samples take no more than three days to arrive at labs for newborn screening. The Journal Sentinel found that samples often were held and "batched" by hospitals to save a few dollars in postage, which put babies at risk of disability and death. Many hospitals were using regular mail to send samples.
When Arizona was found by the Journal Sentinel to be one of the country's poorest performing states, health officials went to work fixing the problem. By July 1, 2014, Arizona had 99% of newborn screening samples at its state lab within one day.
"Transparency improves the performance of just about any system you can think of," said Will Humble, who until recently was director of Arizona's Department of Health Services.
But each state runs its own newborn screening program, and more than a dozen have still chosen not to release any information on how their hospitals or state overall measure up.
Last week, in an effort to help other states, Humble and health officials from Wisconsin and Kentucky discussed changes they've made to their newborn programs at the American Public Health Association's annual meeting in Chicago. While many positive changes have been made, newborns with genetic disorders remain in grave danger in states that have not fixed delays in their newborn screening process.
Stephanie Mayfield, commissioner of Kentucky's department of public health, explained how her state reclassified jobs in the newborn screening laboratory to make some "mission critical," which means the job is considered so important, an emergency preparedness vehicle will pick up workers in case of inclement weather to ensure that testing is done.
Kentucky also started giving hospitals reports on how quickly they were sending newborn screening samples to the state lab, although those reports are not made available to the public.
A spokesperson for Kentucky's department of public health said they "might consider releasing reports in the future," and would work with the Kentucky Hospital Association on the issue.
Two years ago, Kentucky was one of 24 states that would not release any newborn screening data to the Journal Sentinel.
Data provided this week shows the state would have been among the worst performers in the country, with 54% of samples taking five or more days to reach the state lab in September 2013. Since then, Kentucky hospitals have improved, according to the health department — with about 18% taking five or more days this September.
When considering the three-day mark recommended by federal guidelines, 36% of samples in Kentucky did not arrive at the state lab within that time frame this September—still a poor performance that leaves newborns with genetic disorders at risk.
About one in every 800 babies is born with a potentially severe or deadly condition that can be treated and managed if the child is properly tested. These babies often appear healthy at birth but can become extremely sick within days. 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.
Last week's newborn screening presentation in Chicago was organized by the Association of State and Territorial Health Officials, which urged health officials to "transition from defensiveness to quality improvement."
The group has helped coordinate newborn screening education efforts for its members, who lead state health departments throughout the country.
Another organization — the Association of Public Health Laboratories — is coordinating the federal program that will provide grants for about 20 states to improve timeliness within their newborn screening programs. The grants, which will range from about $150,000 to $170,000, can be used for anything — paying for a courier service, isolating bottlenecks or hiring quality improvement consultants.
Scott Becker, executive director for the association, said they aim to build a "community of practice around timeliness."
When asked why the performance of specific states won't be published, Becker said the goal is to "gain trust first" with the states.
In Wisconsin, officials said more than 99% of newborn screening samples are arriving at the State Laboratory of Hygiene within four days. In September, almost 96% were there within three days, compared with 87% when the Journal Sentinel did its 2013 report.
While officials say they are continuing to work with hospitals on timeliness measures, they are also focusing on additional quality improvement efforts, including a push to make sure every baby born in the state is screened and that specimens are properly collected.
Earlier this year, the new tracking effort identified a baby who had not been screened. State lab workers found that the infant had been transferred to at least two different hospitals. When the child's newborn screening sample was finally collected and tested, the baby was found to have a genetic disorder — congenital hypothyroidism, which affects the thyroid. While the condition is not fatal if undiagnosed immediately, it is crucial to start treatment as soon as possible because the thyroid gland makes hormones for growth and brain development.
Read the investigation
To read the Milwaukee Journal Sentinel's "Deadly Delays" investigation into problems in the nation's newborn screening system, and stories about improvements that have been made, go to jsonline.com/deadlydelays.©2015 the Milwaukee Journal Sentinel Distributed by Tribune Content Agency, LLC.
