ST. PAUL, Minn. -- Pediatricians and parents entered the political arena at the State Capitol Tuesday to defend the state's newborn screening system.
Among them were Jaime Jensen of Hugo, who discovered through the routine screening that her baby Ryan had a metabolic disorder known as MCAD.
"It's a very technical term, which means, basically his body can not process fats properly," Jensen told KARE.
"And we found out that he had this through newborn screening. It saved his life because he was five days old and he was going into a coma."
Jensen said that Ryan is now a healthy four-year-old, because his MCAD is treatable with medication and diet.
The screening is now done uniformly for the 74,000 babies born in Minnesota annually, but families that object to it can opt out of the testing. In the past fewer than 1,000 families have chosen to opt out of screening.
The Minnesota Department of Health currently keeps those samples and the test results on file, so that physicians can reference them if the children develop symptoms later. Genetic counselors can also review those tests when consulting parents considering having another child.
The Senate's final health bill would dictate that all blood samples be destroyed as soon as the initial testing is completed, unless the parents opt into having them stored longer. And, even in those cases, the health department would be required to destroy the results after two years.
The measure, if it became law, would also require the state to destroy all of the newborn screening tests previously collected, and do away with all the results of those tests as well.
The bill, authored by Sen. David Hann, R - Eden Prairie, would also dictate that all of the tests -- cards containing blood drops from the newborn babies' heels -- and the results be destroyed after two years.
"It's not about newborn screening," Sen. Hann told KARE, "This is really about who gets to make decisions about the material, and whether or not it should be kept by the State of Minnesota, and indirectly by other entities for research purposes."
Hann is convinced the samples are being used for research families haven't agreed to, despite the fact that families by law must provide informed consent for their specimens to be used for medical research.
Twila Brase, a long-time medical privacy advocate who heads the Citizens Council for Healthcare Freedom, has long contended that the samples will be used by the government in the future to discriminate against persons with certain genetic predispositions.
The council has distributed cards entitled, "Protect your children. Reclaim their DNA." The cards claim, in red-letters, that the states of Texas and New York have sent baby DNA samples to the U.S. military.
"Not all research is good research," Brase told KARE, "There's a lot of people who don't want to know what's in their DNA and have the right not to know what's in their DNA. And they want to make sure other people don't see what their DNA says."
Dr. Pat Simmons, a pediatrician and Mayo Clinic researcher who appeared at a Capitol press conference organized by the March of Dimes, said those fears are entirely unfounded.
"The samples are incredibly protected. They aren't distributed or given out. They are protected," she explained, "It would be tragic to throw out what we can do in terms of saving lives because of some fear that's not been realized."
Simmons said the attempt to dismantle the state's newborn screening protocol could do far more harm than the problem it's trying to prevent.
"The key here is that, if we test, and we keep testing for more things, we protect more lives, rather than compromise lives," she remarked.
"This is a spot of dried blood we're using to test, to make sure we're accurate, to provide that potential for families to go back and look for conditions when they have other children."
Tragedies Averted
Supporters say screening not only saves lives, but it also saves families and taxpayers millions of dollars per year in intensive medical treatment that is avoided through early intervention.
A classic example of that is Finn Gilbertsen of Minneapolis, who was born last year with phenylketonuria, or PKU, which disrupts the body's ability to process an amino acid. Left untreated it can lead to severe brain damage or death.
"We are so lucky we live in a state that screens for PKU," Finn's father John Gilbertsen told KARE, "He's going to be fine now, but only because we know how to deal with it."
Among those who addressed the media Tuesday was Rep. Paul Thissen, the Minneapolis Democrat who serves as House Minority Leader. Routine newborn screening detected his son Evan had congenital adrenal hyperplasia, or CAH.
It disrupts the functioning of the adrenal glands, and can cause early on-set of puberty, cardiac arrhythmias, dehydration and electrolyte changes that can be life threatening. If it's caught early, as it was in Evan's case, it can be treated with steroids.
"My wife and I had no idea this could even be a potential, but because of the standards Minnesota has in place Evan is alive and doing terrifically well," Rep. Thissen told reporters.
"That's really what this issue comes down to. It saves kids lives. It's the smart thing to do."
The State Health Commissioner Ed Ehlinger and Dr. Simmons also have warned that destruction of the samples would cause Minnesota's labs to fall out of compliance with federal laboratory standards.
That's because the cards couldn't be rechecked for accuracy in later audits, to insure the screening process is conforming to accuracy standards.
(Copyright 2011 by KARE. All Rights Reserved.)