Diagnosing Evan: State statute on genetic testing has local boy's future in limbo

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Posted 10:00 PM 7/4/2012 : Diagnosing Evan: State statute on genetic testing has local boy's future in limbo

Imagine your child is sick and it could be fatal, but your insurance won't cover the tests to find out for sure. That is the reality for one local family.

Evan Serrano contracted the H1N1 virus last year and because of his long-term health problems, Evan's parents put him on an insurance program administered through AHCCCS. Now a state statute regarding genetic testing has Evan's life in limbo.

"If they're telling you your child could possibly pass away from an illness but you don't know for sure because they won't run a test, how do you live like that?" said Claudia Serrano, Evan's mom.

A once active seven-year-old boy, Evan Serrano now spends most of his time indoors. Doctors think he has a rare, degenerative disorder called Friedreich Ataxia, which often leads to speech problems, decreased mobility and heart disease.

"There's no cure, there's no treatment, but there are clinical trials for things maybe they can do to slow the condition or at least help us get through this," Claudia said.

To diagnose Evan, doctors need the results from certain genetic tests, but insurance provider UnitedHealthcare won't pay for them. It cites the AHCCCS Medical Policy Manual which states, "Genetic testing is not covered to determine specific diagnoses or syndromes when such diagnoses would not definitively alter the medical treatments of the member...AHCCCS can only pay for services that will help you get better (medically necessary)."

"If we could pay for the test ourselves we would just pay for the tests and be done with it," said Steve Sharp, Evan's stepdad.

Steve and Claudia say they cannot even get a cost estimate without insurance help, but have heard anywhere from $500 to $10,000.

"Without a diagnosis of any kind we can't go to other places, or we can't make plans to get him the help that he needs," Sharp said. "The prognosis may be inevitable, but at least we'll know."

Evan's parents have appealed the decision and thought about switching insurance companies, but they say Evan's illness is now considered a pre-existing condition.

News 4 Tucson contacted UnitedHealthcare. A spokesperson said while they cannot comment on specific member cases, their clinicians are actively involved in discussions with treating physicians.