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Wednesday, May 11, 2011

Alternative Medicine and Data

The Los Angeles Times is carrying a Baltimore Sun story stemming from the Geier case. (The Maryland Board of Physicians declined to reinstate his license today.)
Families participating in a database at the Kennedy Krieger Institute in Baltimore — the largest autism database in the world — report using 381 different treatments. On average, families use five treatments simultaneously and spend $500 a month on them. A few use dozens, and the record is 56.

The problem, autism experts say, is that mainstream medicine has been very slow to identify the causes of autism and to identify effective medical or behavioral therapies. Among those now regarded as supported by randomized, controlled scientific studies are the Applied Behavior Analysis and Early Achievements Program used at Kennedy Krieger; certain speech, language and occupational therapies, and melatonin therapy.

"There is sort of an old adage in medicine that says: 'When there are no good treatments for a disorder, or a disease, there's a proliferation of treatments,'" said Dr. Paul Law, director of Kennedy Krieger's Interactive Autism Network and the father of an 18-year-old with autism. The database has more than 38,000 participants from all 50 states.

Law said it's "impractical and probably wrong to tell families not to do anything that's not evidence-based. But it is important to encourage families to have a rational approach to the things they try … so you don't wind up on 20-some interventions."

Law said data from the IAN project is helping researchers identify the most widely used non-evidence-based therapies so they can be subjected to scientific testing. Those proven to be effective can then be promoted, while parents can stop wasting time and money on those shown to be ineffective or dangerous.

But unlike childhood cancer, in which 95 percent of the patients are enrolled in studies, Law said, only 10 percent of children with autism are registered with IAN or are part of research studies.

"That's really not very good at all," he said. And it's not because it's a rare disorder. Incidence studies have continually increased estimates of autism's frequency in the population.

"Because of the complexity of the disorder, we need everybody to be engaged in finding the answers," Law said. "We all need to come together and support the research process, or we'll never have the answer, or it will take much longer."