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HealthAmerica balks at paying for autistic boy's experimental treatment
Wednesday, January 05, 2000 By Christopher Snowbeck, Post-Gazette Staff Writer
An experimental treatment for autism that more and more doctors are concluding doesn't work seems to be working for a 5-year-old boy in Shaler.
Should the boy's insurance company pay for it?
That question will get a full hearing this morning in the Downtown office of HealthAmerica when Patrick Brunick argues that it should pay for the drug for his son Kyle.
Brunick will have a letter from Kyle's doctor, Gary Swanson, who reports significant improvement in Kyle's condition since he started receiving monthly injections of the drug, called secretin, in August.
But unlike some disputes between doctors and insurance companies over the broad applications of treatment, Swanson agrees with the insurer's conclusion that the drug is experimental and, therefore, shouldn't be covered on a general basis.
He does urge, however, that the costs be covered in Kyle's case because of the improvement he has made using it. Patients using the drug at Allegheny General Hospital, where Swanson is a child psychiatrist, pay about $500 monthly for the medicine, doctor fees and lab tests included in the treatment.
"It would be hard to argue that this isn't experimental," Swanson said. "But if the doctor and the patient and therapists see an improvement, shouldn't [the insurer] be paying for it?"
HealthAmerica spokeswoman Kendall Marcocci says the insurer cannot discuss specific cases such as the Brunicks'. But in general, she said, the health maintenance organization's position is based on lack of scientific consensus, a position shared by other insurers, including Highmark Blue Cross Blue Shield and Aetna US Healthcare.
"We empathize with the family," Marcocci said. "However, the use of secretin in the treatment of autism is investigational and is not a covered benefit. ... It's not a proven treatment in autism nor is it FDA approved for this treatment and, again ... the safety and efficacy for children is still being questioned."
Swanson said he was not concerned about the safety and efficacy of the drug for his patients because doctors at Allegheny General were very careful in assessing patients who received the medicine. They have found few examples of patients experiencing adverse side effects. The use of drugs for off-label purposes is fairly common, particularly for children with psychiatric disorders, Swanson said.
Secretin was developed to induce secretions in the body that doctors then analyze to diagnose gastrointestinal problems in patients. The discovery that it might help autism patients was accidental -- an accident that has been trumpeted loudly in the popular press by those autistic patients who received the drug for diagnostic purposes and subsequently saw improvements.
Autism is a developmental disorder characterized by abnormal social interaction, impairments in communication and unusual forms of repetitive behavior.
A study published last month in the New England Journal of Medicine found that patients enrolled in a study did better when they received the drug -- but no better than other study participants who received a placebo. The authors' conclusion was that the drug was ineffective.
Swanson said those results were consistent with what he had found at Allegheny General Hospital. Only two of the 21 patients who have received the medicine at his practice have seen positive results.
He's quite sure he won't be offering it broadly to autistic patients, but there may be a few for whom it works.
"If it does make a difference, we don't know why," Swanson said.
More studies will be published in the next year that will begin to help answer that question, said Dr. Nancy Minshew, the director of the Collaborative Program of Excellence in Autism at Western Psychiatric Institute and Clinic, which is part of a national consortium of autism research centers funded by the National Institutes of Health.
Minshew says she counsels patients to wait until those studies are published before electing to try secretin. But she believes the ultimate decision about using the drug should rest with the doctor and patient, provided the drug is being dispensed at a center such as Allegheny General that meets the highest quality standards.
"I think it would be pretty hard to argue with physician prerogative and evidence of improvement," Minshew said. "If that child gets better and requires fewer services, they're going to save a lot of money in the long run."
Brunick simply focuses on the day he brought his son Kyle home in August just after the boy received the treatment for the first time. He was stunned to see the boy stringing together simple sentences, making eye contact for the first time and using more words than ever before.
He was also stunned to find that the 5-year-old could draw with crayons like never before. A simplistic drawing of an airplane still adorns the dining room wall in the family's Shaler home. From any other child in any other house it would have garnered the artist a spanking. For Kyle, it represents a dramatic step forward.
"The best way to describe it is in nonmedical terms," Brunick said. "It's like he walked out of a fog and we got our kid back."
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