On the front page of the Business section of the June 7 New York Times was an article regarding Seaside Therapeutics’ ending of the arbaclofen trials. The Times’ describes the experiences of several families who were part of trials, and their thoughts on the current situation. One of the profiled families includes NFXF team member and parent, Holly Usrey-Roos. Their stories reflect the feelings of many other parents whose children were on arbaclofen.
By Andrew Pollack
Ms. Usrey-Roos is certain that Parker’s new verbal ability resulted from an experimental drug he was taking in a clinical trial, and has continued to take for three years since then. She said she no longer had to wear sweaters to cover up the bruises on her arms she used to get from Parker hitting or biting her.
Now, however, the drug is being taken away. It has not met the goals set for it in clinical trials testing it as a treatment for either autism or Fragile X syndrome. And Seaside Therapeutics, the company developing it, is running out of money and says it can no longer afford to supply the drug to former participants in its trials.
The setback is a blow in the effort to treat autism since the drug, arbaclofen, was one of the furthest along in clinical trials. And the company’s decision has caused both heartbreak and outrage among some parents.