Special Delivery: March of Dimes Honors Arizona State Health Director for Work on Improving Turnaround Times on Newborn Screening

Oct 2, 2014, 1:23 PM

An inaugural honor awarded by the March of Dimes last month—the Newborn Screening Quality Award—is the first in a series of awards to state health directors who have made changes to vastly improve newborn screening programs that help prevent death and disability for new babies.

The inaugural award was presented to Will Humble, MPH, director of the Arizona Department of Health Services. He established a policy of full transparency for the length of time it takes Arizona hospitals to send newborn blood samples to the lab for analysis, with a target of having 95 percent of samples screened within 72 hours.

“When hospitals hold onto blood samples for a few days, or a lab is closed on the weekend, this can lead to deadly delays for newborns,” said Edward McCabe, MD, the March of Dimes chief medical officer. “But under Will Humble’s leadership, Arizona has put in place a process that is a model for other states to follow.”

McCabe says the award—named for Robert Guthrie, MD, who developed the first mass screening test for babies in 1963—recognizes leadership in establishing a culture of safety as a way to avoid deadly delays in states’ newborn screening processes.

All states were put on notice about hazardous newborn screening test shipping practices by a Milwaukee Journal Sentinel investigative series, Deadly Delays, published in 2013. She series found that many hospitals delayed sending tests to labs for a variety of reasons, including staff vacations or shortages, or batched the tests in order to save money on shipping, causing diagnosis delays that resulted in babies’ deaths or disabilities.

The series is filled with stories of babies who died or who suffered permanent injury or disability, but would have lived or avoided health problems if the tests had been conducted promptly and doctors and parents had been given guidance on babies at risk. In the United States, about 1 in 300 newborns have a condition that can be detected through screening, according to the March of Dimes. For example, all babies are screened for PKU—an enzyme deficiency—via the test developed by Guthrie. In people with PKU, certain foods result in a buildup of toxins that can cause developmental difficulties. Babies with PKU must have the quantity of breast milk or formula they consume closely and carefully monitored, as the impact of the disease can happen quickly.

Among the findings reported by the Sentinel Journal series was that, in 2012, 70 percent of newborn screening samples from one Arizona hospital arrived at the state testing lab five or more days after they were collected. And, statewide, 17 percent of samples arrived five days or more after they were collected, even though state rules require that samples be sent within 24 hours of collection and the state pays for delivery by overnight courier.

Following the newspaper series, Humble instituted a policy of full transparency on transit times so the hospitals see how they’re doing compared with other hospitals in the state. The information is recorded each month on the health department’s website and also lets parents see the transit times, which they can use to help them choose a hospital for delivery. Arizona physicians currently receive results 1.38 days after collection, according to the March of Dimes.

In the 1990s, the March of Dimes led a nationwide campaign on screening to move it from the patchwork of different state programs that existed. Currently, the U.S. Department of Health and Human Services recommends that every baby in every state be screened for a core panel of 31 conditions; many states screen for more. Earlier this year, the March of Dimes convened a Newborn Screening Quality Improvement Workgroup to address problems highlighted in the Journal Sentinel series, and plans to honor other state health directors who are working to improve transit and turnaround times for newborn screening tests. McCabe says transit and turnaround times are improving, but some of the states still refuse to release their transit time data.

“It really takes leadership on the part of the state health leader and that’s why we’re encouraging state health officials nationwide to stand up and do the right things for the babies born in their states,” said McCabe.

The March of Dimes is partnering with the Association of State and Territorial Health Officials (ASTHO) in order to improve transit and turnaround times on newborn screening tests. ASTHO gave an award to Ellen Gabler, the lead author of the Journal Sentinel series, during the group’s annual meeting in September.

This commentary originally appeared on the RWJF New Public Health blog.