‘There’s a lot of confusion about this’: States decide the number of newborn screenings

MYRTLE BEACH, S.C. (WMBF) - New moms won’t shy away from saying there’s a lot of stress that comes after giving birth. Just ask the soon-to-be mom of three Kristina Johnson, who lives in Myrtle Beach. She said it doesn’t get easier with each delivery.

”I think it only gets worse,” said Johnson.

But there is one constant immediately after birth, in South Carolina, and across the country: newborn screenings.

”When we do teach our childbirth classes we do discuss the newborn screening as basically a state-mandated test that all babies get,” said Laura Baisch, an O.B. Navigator for Conway Medical Center. Baisch helps out with screenings and other daily needs in the labor and delivery unit at the hospital.

According to Baisch, a baby must be at least 24 hours old, and typically she says it’s a process most parents don’t mind.

”We just take a little heel stick from the baby, put five little drops on a piece of paper, and then we would send that out to the state,” said Baisch.

Conway Medical Center provides a pamphlet to all parents, which breaks the testing down further. The panel in South Carolina tests for metabolic, hormone, enzyme, and genetic disorders.

”A lot of people are familiar with cystic fibrosis, sickle cell, thyroid, those things it checks for, but it also checks for disorders we may have never heard of,” said Baisch.

Recommended University Screening Panel or RUSP.

The US Health Resources and Services Administration recommends states test for all 37 conditions on the Recommended University Screening Panel or RUSP, but individual states determine what they test for.

No state tests for all the recommended conditions.

South Carolina comes close at 34 tests on the RUSP.

The Palmetto state also tests for 24 additional conditions, not on the RUSP, bringing the total to 58 tests.

That’s just 15 fewer tests than Connecticut, the state with the leading number of tests.

But as you go further south, the total test number drops.

Alabama only tests newborns for 31 different conditions. Georgia tests for 37 conditions.

“There’s a lot of confusion about this. And unfortunately, it causes confusion for parents, especially because they may look at it at a state and go, well, you’re screening for 70. Obviously, you’re the best and you’re screening for 30. You’re terrible. But they may be screening for exactly the same thing. And so we really need to get some clarity around this,” said Susan Tanksley, a spokesperson for the Association of Public Health Laboratories.

In South Carolina, the lab that analyzes the blood work is in Columbia, inside the state’s Department of Health and Environmental Control, or DHEC building.

After the tests are complete, Baisch says the results go to the baby’s pediatrician.

Parents like Johnson say they welcome the screenings.

“The more kids you have, sometimes as it goes on the more friends you have that have had kids, you’re just more aware of like all the things that can happen, all the things that they’re dealing with, and so you’re just wondering if your kids are gonna have things that come up,” said Johnson.

And medical professionals who oversee these tests daily know their value.

”And even though South Carolina may not test for all of the disorders, the ones that they do test for are very important and very preventable, as far as treatment options go,” said Baisch.

South Carolina’s Department of Health provided the following response when asked about the biggest challenges related to Newborn Screenings:

For clarification purposes, the South Carolina Newborn Screening (NBS) Lab does not
make changes to the list of conditions to the RUSP. However, we do follow the RUSP
when new conditions are added to it and work to add them to the SC NBS panel.
Challenges to the NBS lab when adding new conditions to our screening panel include
the following:
• Access to qualified staff: the NBS lab often finds itself competing with private
entities for acquiring qualified medical laboratory technologists or scientists. This is
largely due to the discrepancy in salary between the private sector and state
government. Also, the evaluation of the NBS analytical data for validations requires a
highly skilled data analyst who is competent in statistical analysis for newborn
screening.
• Laboratory space: South Carolina’s Public Health Laboratory was built in the
1970s and has limited space due to growth over the years. There is very limited space to
expand testing. Most new conditions being added to the RUSP require mass
spectrometry instrumentation which needs additional capacity for electric and exhaust
requirements. Mass spectrometers also have a large footprint, and our lab is at capacity.
South Carolina is building a new, larger Public Health and Environmental Laboratory,
but it will not be completed until 2026.
• Coordinating patient testing with validation: validating new conditions must be
performed simultaneously with patient testing for other conditions. Validation for one
condition occurs using a different part of the same software system, on the same
instrument, as is used for testing for other conditions. This requires
coordinating/sharing the software between the validation process for the new condition
and the testing occurring for other conditions, which is inefficient and leads to delays in
validation since testing is prioritized. Full implementation of a new test or condition can
take between 6 – 12 months.
Another factor to consider is that onboarding a new condition requires communication
and coordination with multiple stakeholders including patients, families, healthcare
providers and specialists, insurance carriers, related vendors, etc. over a lifelong term.
• Funding for new conditions: the majority of recurring funding for the NBS lab
comes from the earned fees associated with the testing. The earned fees are $127 per
initial test. Adding new conditions is costly and includes instrumentation (and
equipment), consumables, service contracts, staff, reagents, LIMS software
configuration and maintenance, and lab renovations. This requires additional sources of
funding for the implementation and ongoing costs of the test. For example, the most
recent tests we added required a legislative appropriation of almost $1,000,000 to
implement.
South Carolina Department of Health

For a full list of South Carolina screenings, click here.

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