Nearly every one of the roughly 70,000 babies born each year in Colorado is tested for a battery of diseases and disorders, and state Sen. Josh Penry, R-Grand Junction, wonders if Colorado should be doing more.

“There is a national conversation, a national push to look at screenings that identify preventable sicknesses in newborns. ... The state of Colorado already requires some but not all,” Penry said.

To study the issue, Penry is running Senate Bill 153 to analyze to what extent newborns receive health screenings in Colorado compared to other states and whether current screening standards reflect recent advances in medical technology.

Jacque Waggoner, CEO of the Hunter’s Hope Foundation, which advocates for universal newborn health screenings, said what Penry and his colleagues will find, unfortunately, is that Colorado does not test for every preventable disease during newborn screenings.

“Colorado is actually in pretty good shape compared to other states, but they’re still not screening for all of them,” she said.

According to the National Newborn Screening and Genetics Research Center, Colorado tests for more than 40 strains and types of diseases and disorders but does not test for at least six serious conditions that newborn screenings could detect.

For example, Waggoner cited Krabbe Disease, a rare but fatal disorder that killed her grandson, Hunter Kelly, in August 2005.

“It’s life and death for these infants,” she said.

However, the head of the agency that actually performs the bulk of tests on the samples gathered during Colorado’s newborn health screenings said the state’s testing regimen has kept pace with developing technology.

David Butcher, director of the Colorado Department of Public Health and Environment laboratory services division, said the diseases the state does not screen for are either extremely rare or the tests to diagnose them are not cost-effective yet.

Beyond the disease screenings themselves, Dr. Michael Pramenko, who practices family medicine in Grand Junction, said he expects Penry’s study will find that even if Colorado does expand its screening requirements, some children still will not get treated for their conditions.

“As soon as they leave the hospital, they fall through the cracks if parents aren’t insured or are underinsured,” he said.

State law and Colorado Department of Public Health and Environment regulations require that babies receive a second round of tests at their first well-baby checkup, but if a parent never brings the child back, the tests are never performed.

Penry said even if his bill ends up costing the state thousands of dollars to perform the study, it is an expense worth absorbing, even in a recession.

“On a human level, it’s the right thing to do,” Penry said, “From an economic standpoint, if you’re identifying preventable illnesses in children at an early age, you’re saving lives and saving dollars.”


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